quote:

---

Originally posted by The Mighty Monkey of Mim:
Just the girl for me, please. Bras are highly overrated...

---

quote:

---

Originally posted by AndrewR:

quote:

---

Originally posted by Jay the Obscure:
I was on a chemo medication called Temodar.

---

Sounds Romulan

---

Hmmm...someone needs to take that pic of Jay and add on Romulan Hair and the David Byrne uniform.
 

---

Posted by Da_bang80 (Member # 528) on :
 
I apologize for bumping this old thread. But I decided on bumping it instead of creating a new one.

I got hit by a car today while out riding my motorcycle. She came out of a parking lot and didn't see me. I managed to avoid hitting her head on, but the front end of her SUV clipped the rear end of my bike, sending my onto the side of the road where I was forced to eat dirt rather than hit a car parked on the side of the road. I'm pretty much ok, except for my ankle which was pinned under roughly 400 pounds of metal. I didn't break it but it's pretty swollen now and there's a nice big red mark right where the ankle bone is.

I just figured I'd let you guys know even though you probably couldn't care less.
 

---

Posted by The Mighty Monkey of Mim (Member # 646) on :
 
Yikes, that sounds painful!

Of course we care.

Glad you're okay.

How's the bike?

-MMoM
 

---

Posted by bX (Member # 419) on :
 
Waitaminute. Are you trying to tell me that someone in an SUV wasn't paying attention to other drivers and others were made to pay a painful price?... Outrageous, sir.

No, but was she at least ridiculously apologetic and traumatized by it? Couple feet back and it might've been a one way trip. Glad to hear you're OK. Ice that ankle, take it easy on it too.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Glad you're okay!
Fuck, you lucked out- go to a doctor (if you have not already) and have him check you out- a lot of serious injuries done become apparant (or painful) untill later.

Did she get a ticket? If so, your medical and any repair costs should be completely covered.

Was she talking on a cell phone?
Seems a cell is surgically attached to all SUV drivers here.
 

---

Posted by tricky (Member # 1402) on :
 
I saw this and though of you
http://www.90poundsuv.com/
(I havn't played it myself, being at a client site and all, my apologies if it's at all offensve to anyone other than drivers of Chelsea Tractors [SUVs])
 

---

Posted by Grokca (Member # 722) on :
 
The scrurge of riding a motorcycle, I have been cut off, hit, had people look right at me and then pull in front of me, it drives you crazy.
People please watch for motorcycles, especially this time of year.
Hope the ankle heals, sue the bitch's ass.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
I do hope you and your ankle get better fast.
 

---

Posted by Da_bang80 (Member # 528) on :
 
My bike's ok, just the turn signal indicators are bent. No, I didn't report it, nor did she get a ticket. My injuries aren't serious, in fact other than some stiffness and tenderness everythings good.

She was very sorry, She wasn't on a cell phone, she just didn't see me because it was something of a blind spot for her due to the way the road and parking lot are positioned. No harm no foul.

When I look back at it I had to laugh. because when she came up to me I politely asked her to lift my bike so I could pull my foot out from underneath. Then she gave me a smoke. She was a nurse at the correctional center I was riding past so she knew nothing was broken, plus about 3 other corrections officers were there.

I've seen a lot of dumbass drivers on the roads lately. People who run yellow/red lights just because they're in too much of a rush to get where they're going. I've seen people get cut off because the other guy was in a lane that was too slow. I've been stuck behind people who purposely drive in the 30's just so they or thier little rugrats can stare at me through thier rearview. People hav ehonked and sworn at me because I didn't run through the yellow light, forcing them to stop. Everywhere I go I see cars with smashed head/tail lights or huge dents in the doors because they or someone else was driving like a moron. Let's not forget that about 90 percent of the drivers here drive at least 10 kilometers faster than the posted speed limit. People ignore school zones, and cut pedestrians off. All this I've seen since I took my bike out earlier in April. It's scary. Especially for someone whose not safely tucked away behind 2 tons of metal.

I feel really lucky that I came out of that with only a bruised ankle and a couple hours worth of work on my bike. It's a 1981 Yamaha XS400 if you're wondering. And I am glad that you guys do care.
 

---

Posted by The Mighty Monkey of Mim (Member # 646) on :
 

"Then she gave me a smoke. She was a nurse at the correctional center I was riding past..."

Gentlemen, I give you the Society In Decline^TM!

-MMoM
 

---

Posted by tricky (Member # 1402) on :
 
I've got a friend who's working in the US at the moment on hybrid cars. He rides a bicycle to work. Apparently the local squirrels are freaked out by this and sit by the side of the road and watch him ride past...
 

---

Posted by Da_bang80 (Member # 528) on :
 

quote:

---

Originally posted by The Mighty Monkey of Mim:

"Then she gave me a smoke. She was a nurse at the correctional center I was riding past..."

Gentlemen, I give you the Society In Decline^TM!

-MMoM

---

It was a women's correctional center.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by The Mighty Monkey of Mim:

"Then she gave me a smoke. She was a nurse at the correctional center I was riding past..."

Gentlemen, I give you the Society In Decline^TM!

-MMoM

---

Or the start of a letter to Penthouse.
 

---

Posted by Grokca (Member # 722) on :
 

quote:

---

1981 Yamaha XS400

---

My buddy used to have one of those in the early 80's, the bank came and took it away because the guy who owned it before him had a lean on it.
 

---

Posted by Da_bang80 (Member # 528) on :
 
They're good bikes, especially for beginners. Got mine for $500 from my uncle. I could probably get close to $1200 because I keep it in good shape. But I won't be selling it anytime soon since I haven't decided what to get next.
 

---

Posted by LOA (Member # 49) on :
 
Sweety, I'm glad you weren't hurt seriously, but PLEASE tell me you got her insurance and contact information Just In Case?

I work for an insurance company now, and I will be the first to say that there are a lot of dumasses on the road. And there are a lot of dishonest money-mongers who are out to make a profit out of the situational experience of a car accident. But there are ALSO a lot of people who are legitimately injured in accidents and don't even realize how bad it is until several days later.

In fact, when I was in my Bad Car Accident a few years ago, I felt fine until two days later. After that, it was almost 6 months before I could walk again. And over 5 years later, I have chronic daily migraines, all as a result of an accident where I initially thought I wasn't injured.

I'm not trying to scare you - I just want you to take care of yourself - if the little voice in your head tells you to get checked out PLEASE DO! Better safe than sorry - you had very little protection from internal and soft tissue injuries, being on a motorcycle. I'm just worried....

I hope you feel better *hugs* And I'm REALLY glad it wasn't worst... I've taken some horrific motorcycle claims in my time. I'm glad you didn't join the ranks of them....

~Liz
 

---

Posted by Da_bang80 (Member # 528) on :
 
Aww. I feel so loved. Thanx guys. I think I will go see a doctor tomarrow. The left side of my body is sore, feels like I strained everything from the shoulder to knee. I'm not going to sue or anything, she felt so bad about hitting me that even though she caused my physical pain, I caused her emotional. And I don't want to add financial pain to that. That's just rubbing salt in the wound.

Besides I don't need cash to fix my bike, an afternoon in the garage can take care of that. As for my soreness, well a little thing I like to call "THC" has already fixed that for me.
 

---

Posted by Sol System (Member # 30) on :
 
After causing it?
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Jeez- reading my first post on this and the LOA's, it's like reading the same ting in a Mirror universe.

Liz is great- no other Flarite coud get away with *hugs*!
 

---

Posted by LOA (Member # 49) on :
 
Being one of the few flarites with woman-boobs (as opposed to "man-boobs"!) has it's perks
 

---

Posted by Jason Abbadon (Member # 882) on :
 
True....I aint hugging anything with "man-boobs".
 

---

Posted by WizArtist II (Member # 1425) on :
 

quote:

---

Originally posted by LOA:
Being one of the few flarites with woman-boobs (as opposed to "man-boobs"!) has it's perks

---

quote:

---

Originally posted by Jason Abbadon:
True....I aint hugging anything with "man-boobs".

---

quote:

---

Rheumatoid arthritis patients taking Humira or Remicade face triple the risk of developing several kinds of cancer and double the risk of getting serious infections, a study led by the Mayo Clinic found.

---

I dont know weither to laugh or cry: I was taking BOTH for a while.

I was hospitalized FOUR times last year for my leg becoming infected.
 

---

Posted by Da_bang80 (Member # 528) on :
 
holy shit! That's why I don't take pills unless I really really have too. If I can't pronounce it I'm not taking it.
 

---

Posted by Chris (Member # 71) on :
 
Why is your leg so fucked? You got a House-thing going on?
 

---

Posted by AndrewR (Member # 44) on :
 
Why does House have a limp anyway - I missed that episode.
 

---

Posted by Chris (Member # 71) on :
 
He had an infarction in his leg. As a result the muscles in his upper thigh started rotting in place and had to be removed. But he's still in constant pain and thus pops the vicodin.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
This is what I've got.
You can search and find some pretty graphic pics if you care to- it's depressing.
In a nutshell, on my left shin (Tibialis Anterior) I have an area about 20x24cm with no skin whatsoever.

Picture the worst knee-skinning you ever got: one where you can see that white fatty layer under the skin....I'm looking at the layer of tissue underneath that. Straight muscle layers that I cover with telfa and zinc oxide paste to aproximate skin.
Funny thing is, nerve damage is a blessing here- between that and narcotics (percocet by scrip and methadone when I run out of that) I have gotten by the last three years of various treatments, tests, hospital stays etc...

I'm a frikkin study case.

My Doctor is the big kahuna at Cedar's Hospital and is the guy everyone else referrs me to if I go for a second opinion anywhere, but nothing's working.

The whole "Job" routine is gettin a old- I dont usually bitch about this too much as I cant do anything about it and so many people have worse shit (I thought I had cancer for almost a month while waiting for test results once) but enough is enough.

Not to mention the almost 10 granh I've paid out of pocket in expenses, lost time at work and all that shit...




Er...who is House?
 

---

Posted by LOA (Member # 49) on :
 
Oh, sweety.... that really sucks.....

If it helps at all (and it doesn't), about 14 of the medications I've been put on in the last year now have large class action law suits against the manufacturers for the long term health effects - no one told me THAT bit of news and I gulped them down hapily each day.

On the plus side, I've been thinking about jumping on board with all of these lawsuits and living the high life.... if I play my cards right, I may never have to work again

Don't stress about the cancer yet though - you're at a higher risk, but you don't actually HAVE it - so there's no sense worrying about it. Be aware, but don't panic.

I found out about my high stroke risk due to my migraines and the medications I'm on a few months ago (something the doctors never told me.......) and I went into super panic mode - a 20 year old girl in my support group died of a stroke, and I realized that could be me! For several weeks straight, all I did was worry, and every day, when the migraine came on, I wondered to myself "Is this the day I'm going to die?"

It finally occured to me, it's not worth all of the worry. I'm glad I'm aware now, because I can prepare the people around me - my manager and several coworkers are educated in the signs of stroke. My boyfriend is aware of the signs of stroke. There are several key people at my jobsite who have consistantly updated lists of my medications to give paramedics, in case I go down on the job, plus I keep a list in my wallet and my boyfriend has a list (he's my emergency contact). Other than that, I don't worry. Life is too short to spend worrying, especially if the worst case scenario DOES come along and end it abruptly *hugs*

I wish you the best and I hope you can find peace in this knowledge, though I know it won't be easy. We're here for ya if you need anything....

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Wow. You're the coolest- really, that's what I needed to hear.

It's odd, I dont like talking about it with people generally. They have sympathy but not understanding.
You've been there in many ways.

I've got a doctor's appointment tomorrow where I'll bring all this up (I dont know if he's even aware of the study yet), but as this was already a last gasp kinda treatment, I dont know if stopping will allow the disease to accelerate -
It's been getting worse as I've lowered by steroid intake- they were making me angry all the time and pack on weight no matter what you eat- but I actually feel better than I have in a while.

The frustrating thing (and I know you understand LOA) is that the docs dont understand why this is happening to me and there is no cause in my case (I've been tested for Chron's Disease and all sorts of other likely candidates).
As Cedars is a teaching hospital, I've been the subject of endless student examinations and "grand-rounds"- being on display is no fun.

It's my immune system that's gone all awky- it seems that my body's defenses are attacking the new cells as they form- preventing healing- then when the wound gets infected in any way, it gets worse, then the cycle starts all over.

At most, it's been a holding action to slow it down.

I'm, taking Methotrexate (chemotherapy with no radiation) to inhibit my immune system, and that is like getting kicked in the nuts each week (I have to do it on my day off of work- it means an additional five or six hours in bed "asleep".

Oddly, it's only in that area (thank God), but every scrape or nick on my other leg is a cause for concern.
How people can live with this shit on their hands or back is beyond me.
 

---

Posted by B.J. (Member # 858) on :
 
At least you're still living. Sounds kinda similar to something that happened to a dog I had about 7 years ago. She had an auto-immune disease that was attacking her red blood cells. We didn't know anything was wrong until she passed out in front of us. She pretty much had around the clock care for several days after that, including trying many different treatments, until there was nothing else to do.

I really don't mean to compare you to a dog in any way, but that was an extremely painful experience for my wife and I. It took us a long time to move on. Fortunately for you, there are many more options for humans than there are for canines, although I'm sure you're quite familiar with most of them.

Yeah, I'd go with LOA's sentiment, which is what I try to live by even though my worries are not on the same level. The only downside is that it also makes me think of that Bobby McFerrin song...
 

---

Posted by Shik (Member # 343) on :
 
OMG Jason I want to hump you right now, that is like the hottest thing EVAR.
 

---

Posted by TSN (Member # 31) on :
 

"Er...who is House?"

You should watch more television.

Wait, no. No-one should watch more television. What was I thinking?

Anyway, everyone ought to know that drugs, even approved by the FDA, are not tested for long-term effects. They don't know what years of medication will do to a person until people have been taking it for years. Just because you're taking an "approved" drug, that doesn't mean you aren't still a guinea pig.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by Shik:
OMG Jason I want to hump you right now, that is like the hottest thing EVAR.

---

It's not something I bring up on a first date, no.

While I understand there's no viable way to do long-term effect studies, I've noticed a lot of new drugs are being approved with inadequate testing (Viox for example).

I sure hope this is not the case here- Remicade is made with mouse DNA (really!) but Humeria is all human-based.
I need something spider-based: then I'd have cool powers and no skin.
Kinda Spider-Darkman.
 

---

Posted by Shik (Member # 343) on :
 
Actually, I was sort of serious.
 

---

Posted by Ritten (Member # 417) on :
 
You know, other than a bout with some toxins I had the unfortunate run in with this earlier year, I am relatively healthy.

I do wish the lot of you the best.
 

---

Posted by Lee (Member # 393) on :
 
It certainly puts my hayfever in perspective.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Ueah...I was healthy too, then I turned 30 and my warranty expired...

Seriously, prior to this, I'd never been to a hospital since birth.
 

---

Posted by Ritten (Member # 417) on :
 
I am edging 40, and I feel like a Trek Conduit GNDN.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, okay. If you felt like a EPS Conduit, we'd call the men in white coats...

So, I went to the doctor today and was told b both him and the residents working my case that "It's bullshit" to quote my doc on the Remicade/Humeria story.

I was told this: the study was only done on paitents with severe Ruhamitoid Arthritis, all were over 50 and many had other health complications or were on other drugs that have a cancer risk at the same time.
The docs say that this kinds of bullshit is cropping up a lot as companies try to discredit their compitition.

Shitty reporting on CNN/AP's part though. A resident told me the office had fielded over phone calls from concerned paitents since the story broke on wednsday.

Anyhow, I'm (as of today) not going to be on either Humeria/Remicade anyway: neither is working for me and Remicade is counter-indicated for people at risk of the kinds of infections I've already had.

So the doc upped my Methotrexate doesage (it'll be like getting kicked twice in the nuts, instead of just once- goody!).

I can tell my doc's at the bottom of his bag of tricks.
Dont know what I'll do from here if this does not magically help.
 

---

Posted by B.J. (Member # 858) on :
 
Is amputation any sort of option? I'm actually being partly serious here. Obviously not the best answer, but is it a possible answer?
 

---

Posted by Toadkiller (Member # 425) on :
 
I'm guessing not due to the referenced "any cut or nick is a source of concern".

I bet stem cells would though - you should spend your "kicked in the nuts" days hating Republicans. Maybe you can get on TV.

I'm just being stupid trying to cheer you up. There seems little we can do other than provide ever increasing levels of pathetic comic relief. Or argue about the length of the Defiant - we haven't done that in awhile!

If there ever is anything we can actually do let us know....
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Thanks.

While the scary threat on amputation is on a distant horizon, it's more likely that would not be a real concern for several years- and only after things get considrably worse.

As pointed out, even if my leg were removed, there's no certainty that the stump would not develop the same problem- resulting in a horrific whittling away situation.

I've already decided that if I should ever lose my leg, I want the same sort of fake one as in the first Darkman movie.
That would rock.
I would at least want a gun holster built in...

As a modeler, I would have to add in the posironic interior they used wheever they'd open data's head- blinking lights and the like.
 

---

Posted by LOA (Member # 49) on :
 
Jason~

Well, I'm glad to hear that there isn't nearly as much to be concerned about with your cancer risk as you originally thought! That's a HUGE relief, I'm sure!!

A couple of comments to things you've said... first, AWESOME with the sense of humor - I swear to God, it's the only way to get through crap like this in life. I'm glad to see that you're keeping it with you, even though things aren't all peaches and cream right now

Second, about the steroids, I SOOOO understand about being bitchy and putting on weight! Sometimes, for severe migraines that won't break, we'll try me on a steroid treatment before we consider hospitalization and OMG - a week of steroids and I'll put on 10lbs, no problem at all. Plus, the last time I was on steroids, I was SUCH a bitch that my roommates literally wanted to kick me out. Honest to goodness - I lived with gay men at the time, and they could put up with ANYTHING - but they told me to pack my suitcase and go visit my boyfriend in AK or I wouldn't have a home any longer. So I bought a plane ticket and left. Then I called my Neuro and told him the steroids had to go... I couldn't risk being homeless over the situation!!!

I do understand what you mean about being a medical oddity that your doctors don't even understand, to an extent. While our conditions and treatment plans are COMPLETELY different, it's still frustrating to feel like the ONE patient who can't be treated (I mean, come on - I have migraines for gosh sakes! Everyone knows Excedrine Migraine can fix those... the pretty lady on the commercial said so!!!) One thing that has helped me a lot, and I don't know if it's an option for you, is I found a migraine support group online one night a few months ago while researching my condition. I found it COMPLETELY by accident, but I swear, it's been a lifeline - everyone there is the "odd man out" - all of us are medical enigmas who felt alone, but I swear to you, there is strength in numbers. I wonder, is there a support group of any sort for people with conditions such as yours? Mine is just a forum, much like Flare, but we discuss different treatment palns, doctors, life, and just in general offer support. It's made a night and day difference for me to feel like I'm not as alone, and other people also are going through the same trials every day as I am. It's just a thought....

I'm sorry to hear about you getting kicked in the nuts TWICE a week now instead of once.... that sucks, but hey... at least your nuts aren't in a vice, right?

I'm really wishing the best for ya, and if there's anything I can do to help you, or offer support, let me know.

Gosh, we're a sickly bunch around Flare, aren't we?

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Definitely relieved about the cancer thing, but not real happy with my doctor's "we've tried everythig already" monalogue.

Time to give Voodoo another shot: mabye I can do it without that whole "villagers chase me out of town" routine this time...

Regarding the steroids, I was on 40 mg of Predisone for a while- it's like being pissed off all the time, sweating in your sleep and having to literally watch every word you say (I'm a manager at Fedex with 25 employees that occasionally piss me off even without drug enhancments).

I'm now down to only 15mg per day, but getting off steroids is really tough- I felt SO BAD without them for weeks, but gradually I got better and better untill I now feel good most of the time (relativly speaking- the pain is always there like music in the background, but I can ignore it most of the time)...I'll go through it all over as I (finally) get off the 15mg I'm still on.
Mornings, I really drag ass untill those 15hg kick in (takes about four hours).
No idea if kicking steroids is causing the wound to get worse or what, but I'd rather lose my leg than not have control over myself.

My uncle (an amazing guy that works children's cancer hospice) asked me what kind of "support" I have: there's nothing for this particular problem that I can find- when there's something pertaining, it's a group for people with diabetes or Chron's Disease or something.
I'd feel pretty bad complaining about my problems to people that have it so much worse.

So I just listen to lots of music -Monster Magnet rules for those pissed-off moments and U2 is always good to sing along to.
Tonight is a Launchcast/build models kinda night, methinks.

The beach is spooky deserted on weeknights and I sometimes go there (though lately there's couples fucking away when I go, and that's annoying/depressing that I'm not doing that instead of them.

Really, the only truly scary-as-shit moment with this whole thing was a year and a half back- I was in a LOT of pain, took a shower and slipped and ate it on my bathroom floor (the wound was badly infected at the time and painkillers dont work if that happens). I dont know why exactly (stress, steroids, pain), but I just bawled my eyes out for like half an hour- I felt really lost- and then I was allright again.

I'm not really a "weepy" guy, so that was unnereving.

Holy crap, I was going to explain the ups and down of narcotics dependence, but this is already as long as one of Jay's posts, so...
 

---

Posted by LOA (Member # 49) on :
 
Oh, crud... don't even get me STARTED on narcotics.... and the stigma of using them :-P

Blessedly, I've only had one point in my treatment where I've been dependant on narcotics (note to all non-prescription hoarders - dependant and addicted are two different things.) It was at the point where the saily migraines were the worst, and my doctor was trying to get me into a neurologist specializing in my condition - there was a long wait, so he treated me as he knew best, which was a concoction of muscle relaxers, narcotics, anti-inflamatories, and some preventatives. Some 26 pills a day, in all.

Well, what he didn't know (and I, in turn, didn't know) is that migraines are a vicious spiteful disease that like to torment their host by getting worse when pain medication is used too often. So the more my doctor would give me, the worse the headaches would get, and the cycle would perpetuate.

The new neurologist quickly nipped that in the bud by cutting me off of EVERYTHING cold turkey. It was the worst two weeks of my life following that appointment, but since then my headaches aren't as bad day-to-day.

Anyway, the moral of the story is, now I can only take a pain reliever up to 3 days a week, no more than 10 days a month, no matter how bad the pain is. So I can't really get dependant on any of them anymore. But honestly, I'm glad about that, because I was heading down a bad road where my liver would implode from overuse by the age of 30 if I kept it up :-)

Sorry you don't have a better support group, but as I said, I'm here for ya...

Oh - and as for the people fucking on the beach - throw firecrackers near them and then hide while you watch what happens. That will make you smile

~Liz
 

---

Posted by Da_bang80 (Member # 528) on :
 
Lol, Oh man Liz, that firecracker thing? I am SO trying that. But first I'm gunna steal thier clothes. Ooh! I feel so deliciously evil!
 

---

Posted by Sol System (Member # 30) on :
 
You will have to settle for teenagers necking down in Capone's gin tunnels.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

But honestly, I'm glad about that, because I was heading down a bad road where my liver would implode from overuse by the age of 30 if I kept it up :-)

---

Yeah, that's a concern. I take four Percocet 10/650 pills a day.
My doc keeps reminding me that I cant drink with the cocktail that is my body.

As to dependant/addicted, I'm sure I'm a bit of both: a couple of months ago, some twat resident took my news of "I'm feeling better and useing less painkillers" as her cue to reduce my scrip from 120 monthly to 40.
Turns out, you can (by law) only recieve a narcotic scrip once a month (regardless of doseage).

Hooo boy- trashed my place looking for one once the pain got bad. Some definite withdrawl symptoms too.
Thank God for an upstairs neighbor with connections- I had some secondhand Methadone the next day (that stuff works wonders, but stay away from Vicodin).

Now I just stock up for the month and keep any overage in the freezer for a rainy day.
 

---

Posted by LOA (Member # 49) on :
 
I use Vicodin and Percocet both, among so many other things (If a junkie was to rob my apartment, I swear, he'd think he hit the motherload!). I've never used methadone at this point, though. There are some people in my support group that do, but I'm working hard to stay away from the stronger drugs for as long as I can.... lord knows, the world isn't ready for me to be even more high!

"Lol, Oh man Liz, that firecracker thing? I am SO trying that. But first I'm gunna steal thier clothes. Ooh! I feel so deliciously evil!"

Yes... that would be even better... I like it!
 

---

Posted by Toadkiller (Member # 425) on :
 
So, Liz that was you. The pain from the firecracker burns has passed, and even some of the shame and humiliation...but not the burning anger, oh no, not the anger.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
You're just angry because you were by yourself when she caught you...

Vicodin has srange memory-loss side effects for me.

Last time I took it, I woke up in Canada with these metal claws in my forearms...
 

---

Posted by Toadkiller (Member # 425) on :
 
It still burned man.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
That's from the chafing.

Use lotion next time.
 

---

Posted by Peregrinus (Member # 504) on :
 
Or the sand. Gotta make sure there's no sand in there.

Sorry for my little personal hiatus. Back in March, I started experiencing late-night temperature spikes. Start about 10pm and peak about midnight. Then gone by morning. This lasted about tendays and the worst was the last night when it peaked at 104�. Then no more. Two weeks later, I had my next appointment with my gastroenterologist, told her about that as part of the news since the last appointment. She got worried and sent me to the infectious disease doctor, who ordered a culture, which came back positive for staph infection, and he prescribed Vancomycin -- 500mG/2x daily.

After about three weeks on the Vanco, with another culture still showing staph, I was starting to experience quite a few of the side effects. So the doctor switched me onto Daptomycin -- 350mG/1x daily. Brief resurgence on my part before the same side effects started kicking in again. I don't usually do antibiotics, so my body tends to not like them and fight them. I have now had nausea, constipation, diarrhea (at the same time!), extreme loss of energy, muscle cramping, pain, and weakness, chest pains, headaches, fever, dizziness, trouble sleeping, shakiness, I'm peeing more, sweats, and severely decreased appetite. Thank God I'm still getting most of my nutritional needs intravenously. Still, I've lost over five pounds of good weight -- mostly arms and upper body, but some legs, too.

So as an incidental benefit of all this I'm grouchy, short-tempered, spend all night and most of the day just laying around, as I have no energy... Oh, and depressed. Yaya. And here's the best part! My girlfriend, whom I haven't seen in a year, is getting into town for a week-long visit on Thursday. This is NOT how I wanted to be for her, goddammit... I was feeling great when I bought her ticket. Which reminds me, my libido's gone away again, too. Just perfect.

Oh, and I found out more of what my possibly impending surgery is going to entail. Double dose of depression. I thought they would be going in and repairing the site of the fistula, not fucking hacking stuff out and reworking my plumbing.

Still, I'm a long way from when I drowned in my own fluids last October. My fighting spirit has rebounded nicely. I'm going to focus on being the best I can be while Jen's here, then I'm going to recover from that, then I'm going to focus on thwarting the surgeons by making the fistula close up on its own.

So, yeah. Jason. Liz. At least three of us here have something going on that baffles the doctors, whose meds often seem to be doing more harm than good, and have no choice but to just persevere.

I'm with you, too.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I feel for ya: I've had the Staph infection a few times (in the wound on my leg only) and it was pretty bad. Vanco is not too bad- small I.V. bag every four hours? You got the infuser machine pumping it into you?
I been there a few times.

On the bright side, at least your doc did not stick you on Cipro: I was on an I.V. drip of it for a week and I literally excreted it through my pores, unine, etc- a harsh sickening chemical smell. Even your sense of smell is affected.
Takes about a week to clear after you're off it.

Now, if I get an infection, it's Cipro (750 mg- enough to freak my pharmacist!) but only via pills. I have to use sterile gloves, tongue depressors etc, and not ever change dressing in my bathroom (though it's clean, it's a looong way from sterile).
Thank God for good insurance!

How are you taking I.V. nutrition? Do you have an IV shunt in your arm or something (I had the "webshooter" version in my wrist mostly- less painful than the forearm).
Hopefully you're home (hospitals- even the really good ones like Cedars) are no fun.

I'm glad you've got Jen there for you- I find that even flirting with women inproves my well-being drasticly.

Glad you're in "fighting spirit"- that's imporntant before surgery.
When you going in for that? We should make you some horribly embarassing "get well" geek gift and have it sent to you.

Personally, I'm in a Coboy Bebop "Whatever Happens- happens" frame of mind lately.
Works.
 

---

Posted by TSN (Member # 31) on :
 
Don't the characters on "Cowboy Bebop" occasionally end up... deceased?

I'm just saying.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Yeah, but Spike was probably dead before the series started (depends on your POV).

Besides, it's either "just go with it" or "uselessly rail against the random unfairness of it all", and that gets old quick.
 

---

Posted by LOA (Member # 49) on :
 
Saw the Neuro today - he doubled my dose of my epilepsy medication over the next two weeks - I don't have epilepsy, BTW.

As for pain, there's still nothing to do there. He said I can start doubling up on DHE and Percocet if I want to - DHE, BTW, is the same substance that was in Elvis's system when he died that all of the news reports called LSD. It shows up the same way. Elvis had migraines and died with migraine drugs in his system, and everyone thinks he was a druggy. Just a side note about the media in the country blowing everything out of proportion.

DHE, also, makes me very sick. As does the Percocet since I've been taking this new epilepsy drug. So I get to keep taking my anti-nausea medication. Joy.

I'm just pretty muhc bored with the entire process.

I got a new sleeping pill though - if this one doesn't work, I get to try Valium next, even though other benzodiazaprines have given me adrenal malfunction in the past. Yay, me!

Sorry. I'm just bitchy about it all - that's a side effect of the epilepsy drug, I guess. That's what my doctor says at least. So I'm going to go try and take a nap, then I'm going to clean the apartment for my boyfriend.

You kids get better, you hear? Lord knows the pharmaceutical companies in America are doing well enough without us.....

~Liz
 

---

Posted by Shik (Member # 343) on :
 
Haha, you're all ill!
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Okay, Shikkie, I'm gonna slice off your skin, LOA's gonna hit your head with a frying pan, Peregrinus is gonna punch you in your stomach and you dont even want to know what Jay's going to do to you...

quote:

---

Originally posted by LOA:
Saw the Neuro today - he doubled my dose of my epilepsy medication over the next two weeks - I don't have epilepsy, BTW.
~Liz

---

quote:

---

Originally posted by Jason Abbadon:
Ive been anti-tobacco smoking forever, so it's be really hypicritical of me to suddenly be "pro-pot".

---

quote:

---

Originally posted by Jason Abbadon:

quote:

---

Originally posted by LOA:
Saw the Neuro today - he doubled my dose of my epilepsy medication over the next two weeks - I don't have epilepsy, BTW.
~Liz

---

I hear that- I'm on chemotherapy, but I dont have cancer.
Try explaining that one to the family.

---

Amen... no one understands why I have headaches, yet I don't actually take a single headache medication - and I haven't in years. Blood pressure medications, calcium channel blockers, anti-epileptics, anti-depressants, anti-psychotics, steriods, birth control, and pain killers, to name a fet - but no actual "headache medications". *shrug* They don't work, so they don't get prescribed. That's just how it is.

As for the sleep, that's a several layer deep problem - first, there are definately times when I cannot sleep because of the pain. That sucks. Then there are the nights that the ringing in my ears keeps me awake - the ringing is the worst when my migraines are the worst. Problem is, the less I sleep, the worse the migraines get. But as you can see, the worse the migraines get, the less I sleep. It's a vicious cycle.

Most of the time though, I can't sleep just because I can't sleep - I have insomnia. Not sure why, exactly. Part of it is genetic - Dad's side of the family - part of it is just the fact that 50% of migraine sufferers in my position just DON'T SLEEP.

They thing migraines and insomnia are triggerred by the same part of the brain - they're not positive, but pretty sure... so my part is all fucked up, obviously
 

---

Posted by Shik (Member # 343) on :
 
Maybe you should take a page from Egon Spengler & drill a hole through your head.
 

---

Posted by TSN (Member # 31) on :
 
It's been a long time since I saw either Ghostbusters movie, but I don't remember that. Now, if you had said "Max Cohen"...
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Most of the time though, I can't sleep just because I can't sleep - I have insomnia.

---

You should read the Stephen King novel Insomnia- it's pretty good and goes into the Insomnia problem at length....plus halucinations and the supernatural.

My problem sleeping is just that when it's painful it wakes me up with a sharp pain, then I gotta walk around for a while, take a pill, watch TV and go back to bed.
It's a three hour cycle.

Or, I'll be awake for 24-36 hours (because of pain) and then sleep from exhaustion for ten or twelve hours.
I've learned to cut my fingernails to the quick- I kept waking up and finding I'd dug my pnils into the pals of my hand and drawn blood.

Fortuantely, I've been doing much better in the past few months and am sleeping well (if a bit too much).

Hmmm...I bet there's a ton of online support for Insomiacs. Mabye there's a good trick or two you could use from them (as I'm sure you're over good-natured but useless home remidies).
 

---

Posted by B.J. (Member # 858) on :
 
Venkman: Egon, this reminds me of the time you tried to drill a hole through your head. Remember that?
Spengler: That would have worked if you hadn't stopped me.

It was near the beginning. I actually saw this the other day.
 

---

Posted by LOA (Member # 49) on :
 
Yeah, I've tried just about all of the home remedies I can... I even went a saw a sleep specialist, but he was a joke... he told me that if I stop using computers 3 hours before bed, I'd sleep better (an inpossible feat, seeing that I get home from work 3-4 hours before bed is all, and have homework). He also said that my insomnia will probably just "go away" eventually.

Glad I took the time to seek out his expertise :-P

I've found some things that help on my own... not a lot, but a little... I sleep with an eye mask so no light gets to me, I sleep with a fan on to block out the noise in our apartment complex better, and I've found that sleeping with a heating pad helps for some reasin... I just sleep better when I'm surrounded in warmth.... so these things help, but it's still not a good night's sleep most night, and there are still those nights when I can't sleep at all.... but you know... it's just part of life

The boyfriend and I are moving next month, so we're looking at houses in quieter neighborhoods - there's just too much noise in an apartment complex, and we're close to the freeway.... if he opens the window at night (which he LOVES to do) it's a death sentence on my sleep... so I'm hoping that moving will help :-)
 

---

Posted by Shik (Member # 343) on :
 

quote:

---

Tim's failimg old man memory belched out:
It's been a long time since I saw either Ghostbusters movie, but I don't remember that.

---

quote:

---

Originally posted by LOA:

...and I've found that sleeping with a heating pad helps for some reasin... I just sleep better when I'm surrounded in warmth....

---

Go but yourselfa set of "Jersey Sheets" or "T-Sheets". They're made from stretch T-Shirt material and warm up quickly and are insanely soft.
I sleep waaaay better since buying a few sets of those. I even read in bed now (I never used to) because the whole confort thing.
 

---

Posted by Da_bang80 (Member # 528) on :
 
I sleep with a heating pad too, especially in winter. I wrap it around my feet because frostbite's made them always feel cold. And I hate cold feet.
 

---

Posted by Shik (Member # 343) on :
 
Jesus H fuck. Am I the only person around here who's not a cripple, has no incurable disease, not on any form of medication, or otherwise medically fekakte in some fashion?
 

---

Posted by TSN (Member # 31) on :
 
I am none of those things, and I'm not a convicted child molester. So, y'know, for whatever that's worth...

(Addendum : I think I might do well to point out that I am also not an unconvicted child molester, just in case I was being too specific above.)
 

---

Posted by Shik (Member # 343) on :
 
Awesome, because neither am I. Besides, I'd rather be healthy & a felon than on the track to genetic uh-ohhood & an 'upstanding citizen."

Not tyo say anyone here is a candidate for genetic cleasing. I do believe that modern medicine is to blame in many of these cases. I'm not saying "do not medicate & beleive in prayer"....but we as a culture are so quick to run to a drug instead of just riding it out. There's no more system shock & learning anymore.

If I ever get to the point where I have to start each day with a mounded pill medley that needs to be continued throughout the day at various times, I'm gonna get up & walk in front of a goddamned Greyhound.
 

---

Posted by LOA (Member # 49) on :
 
Shik~

Agreed, to an extent.

Doctors DO overprescribe for many conditions, and a lot of people do go to the doctor too often. I'm not sure that a "skin eating disease", chrohn's and the joys it brings or my migraines can be compared to the common cold that is being mistreated with anti-biotics though.

I battled with the migraines for 4 years, having them for weeks and months straight before I sought ANY medical treatment.

Furthermore, I have tried numerous non-pharmaceutical techniques to treat them, including chiropractic, massage, biofeedback, dietary changes, vitamin regimins, sleep architecture focus, special sunglasses and all around lifestyle renovations in an attempt to control the migraines without medication.

I have yet to find anything that has helped.

I do not like the drug coctail that I take, nor do I appreciate the fact that I am helping the pharmaceutical industry in America with it's constant raping and pillaging of today's consumers, however, I also cannot live with these headaches and am desperate for relief.

I have had a migraine every single day of my life since Jan. 21, 2005. Imagine that.... then imagine living life that way - still driving, working, going to school, and trying to be "normal"... you're probably be willing to take a pill, too. Keep in mind that a migraine is not just the worst headache you've ever experienced - for me, it also includes nausea, vertigo, spots and lights in my line of vision, hearing things, light AND sound sensitivity, ringing in my ears, exhaustion, and emotional disturbances. Some other migraneurs experience all of that plus slurred speech, loss of use of their limbs and other stroke-like symptoms, and even blacking out. It's not an easy thing to deal with on a day to day basis.

I've tried over 70 different medications now to halt the headaches. There are very few that have helped at all. Preventatives are largely unsuccessful, and painkillers cannot be used regularly in my case. But I do what I have to do, and I will keep trying all avenues until I can find something that works or I know all of my options have been exhausted. *shrug* It's my only choice.

And for the record, migraine disease is the number one misdiagnosed and undertreated condition in the United States according to the World Health Organization.... and it IS a disease. Riding it out, or "system shock and learning" as you put it is not an option. Migraine is a neurological condition that affects about 18% of the general population in the US and does not just "go away"... The good thing is, for about 95% of people who seek treatment, there will be a treatment plan found. In my age group, chronic migraine is even more rare, affecting a much smaller portion of the population, with a higher treatment success rate for those diagnosed - 98-99% are treated successfully within the first 1-2 tries. As I said, we're up to 70 total meds for me, so I'm most obviously in the 1-2% in my age group that are difficult to treat. But I'll keep trying. There are over 100 preventatives on the market, and I've only taken about 40 of those. Then they can be mixed, forming an infinate combination.... there's still a long way to go.

There. Consider yourself learned

~LOA
 

---

Posted by Sol System (Member # 30) on :
 
Perhaps we should all go read some Marcus Aurelius and relax a little.
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
Wow 234 posts and this thread is still going strong.
 

---

Posted by Toadkiller (Member # 425) on :
 
LOA-

I haven't read all 234 posts, and really probably won't. Have you tried chiropractic or acupuncture?

As a scientist I'm not sure of the claim modes of action, but empirically they do have some efficacy. Of course there's that whole "in some people" thing again.

Shik - just give us a few years.

Flare 2031:
"Who gives a wipple how big the defiant is I HAD A BOWEL MOVEMENT TODAY!!

L33T
 

---

Posted by The Mighty Monkey of Mim (Member # 646) on :
 

quote:

---

Originally posted by Shik:
If I ever get to the point where I have to start each day with a mounded pill medley that needs to be continued throughout the day at various times, I'm gonna get up & walk in front of a goddamned Greyhound.

---

quote:

---

Originally posted by Toadkiller:
LOA-

I haven't read all 234 posts, and really probably won't. Have you tried chiropractic or acupuncture?

As a scientist I'm not sure of the claim modes of action, but empirically they do have some efficacy. Of course there's that whole "in some people" thing again.

---

I've tried Chiropractic several different times with different doctors who SWORE they could fix me. Finally, the last chiropractor actually said "I can't see you anymore in good conscience - there is absolutely nothing wrong with your neck or spine and I can't keep taking your money since I'm obviously not the cure."

I apprecaited the honesty since chiropractors are notorious for overtreating whenever possible.

Accupunture has not been tried YET. It's very expensive in my area, and there are only two doctors who are really good with migraine patients - a) they have long waiting lists to get in and b) my insurance has a LOT of loopholes to jump through to get approved for any coverage. So I'm working on that. Even when I get coverage, it will only be partial, and only for my first 10 appointments, but that will be enough for me to find out if it's helping or not. My Neuro says that in his experience, a good accupuncturist will help about 20% of his patients - it's worth a try, though my pocketbook is going to be bled dry by the process. *shrug* Hopefully within the next 6-8 weeks all of the loopholes will be gone through and I'll have the money saved up and an appointment date to get in. That's the goal.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Huh. There's an acupuncture school not a miles from my apartment- they offer free (student) treatments.

Personally, I already have enough problems with nurses ticking needles into me...
 

---

Posted by Toadkiller (Member # 425) on :
 
Well - there you go. Go to Florida and crash at Jason's place.


 

---

Posted by tricky (Member # 1402) on :
 
Hang on, at jason's? not into Jason's place?
I had the semi all prepared...
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Sweet.
Mabye now they'll finally send me that federal anti-terror funding I've been requesting...
 

---

Posted by Peregrinus (Member # 504) on :
 
Any funding is good. I think I've been approved for SSI.

Okay. I thought doctors were supposed to be smart. I've been on Daptomycin for longer than I like to contemplate. Side effects I've experiences include nausea, constipation, diarrhea (at the same time!), Fatigue, muscle weaknes and pain, chest pain, heart palpitations, loss of appetite, loss of libido, and several others that I'm forgetting at the moment.

Tuesday, 30 May, I had my regular weekly blood draw for labwork, and they sent the nurse back to double-check, and my counts were "critically low". Evidently I'd been sliding for some time, but they had stopped sending us copies of my results, and no one bothered to do anything until it was an acute problem.

So I checked into the hospital for three and a half days, got four units of blood, a passel of antibiotics, and unending saline. Blood cultures were still showing staph, so I lost the central like I've had since October and got a new PICC in my left arm. Yay.

After getting out of the hospital, I started dwindling again. I have arguably the best infectious disease doctor in the city riding herd on my case at the moment, and it was my MOM who figured out the side effects I was experiencing, and the problems with my blood, were all just effects of severe dehydration. Duh. I can't drink enough water to counter the diarrhes. Fistula, remember? Most of whatever passes my lips goes straight into my colon and is wasted. This is why I can't do any oral medications or supplements. There are tricks to maximise absorbtion, but they only go so far.

So now I'm doing a half-litre of saline every day, and it seems to ALMOST be enough. I'm going to get my GI doc to up it to 750mL.

But having Jen here for a week and a half was incredibly theraputic, as well as plain delightful. I love that girl. Which is, of course, part of why I disappeared for the last few weeks. *heh* That, and feeling cruddy from the antibiotics, which I have a handle on now, so I think I'm back (again).

As for other things, if it's baked into brownies, I might conceivably one day resort to marijuana, but never in its raw form. The smell makes me want to find the source and kill it. A rather scary knee-jerk reaction. Percocet has been my very good friend in the past. Vicodin makes me nauseous. And I, too, avoided an allopathic approach to treating my Crohn's for most of the time I've had it. All of the meds for it are immune suppressants. No thank you. And I can't do penicillin if anything happens, being allergic to it. I mean severe anaphylaxis and die kind of allergic. So I'm very cautious about my meds. I am presently only taking three. As well as several homeopathic treatments that do not conflict (and seem to be working better than the allopathic crap).

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Wow, that sucks.

Hmmm...could your house/apartment be infected with Staph? I mean, could it be that disinfecting your residence or moving might help you shake it?
I read somewhere that most staph infections originate while in the hospital (all those infected people in an enclosed environment, I guess).

Just a shot in the dark, I know, but I've not had any real infections in my leg since I went all "lysol crazy" in my house and useing sterile goves when changing the dressing.

As to the rest, I'd seriously start searching farther afield (online and via your insurance provider) for other specialists that might have a fresh outlook on your case.

It's where I'm at presently- my doc is officially out of ideas except for increasing my chemotherapy dosage (something that comes with it's own share of issues).

Lets switch diseases for a few weeks- you can have my super immune-response system and the steroids (to bulk up) and I'll get skinny as a rail and my leg will heal up.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Super-sickly-double-post!
 

---

Posted by LOA (Member # 49) on :
 
Getting a new perspective may not hurt, even if you DO have the best doctor in the area...

I'm contemplating it right now, and it's a hard thing to do, because I KNOW that my doctor is phenomonal, but I just feel like I'm at a point where we're getting nowhere and a new set of eyes on my case file wouldn't hurt and might help...

I wish you luck... that's a horrible situation you're in. I've never had a staph infection, and I pray that I never do. That's my biggest fear when I'm in the hospital, because I know a lot of people in my migraine support group that went in without one and somehow came out WITH one... it's scary!

I hope they can find something for you soon....

I presently am doing more research than a medical student completing a research thesis on a condition called idiopathic intracranial hypertension. It's rare in the general population, but I've found through reading case studies that it's VERY common in migraneurs such as myself who do not respond to any other treatments. I've already tried once to talk my doctor into testing me for it, and he would not, even though I exhibit almost all of the symptoms. His reasoning is that I'm not overweight, as most people with this condition are, and my optic nerves are not visibly swollen, as is a common symptom.

Well, The more research I do, the more I find that the swollen nerves are NOT always seen in a common eye exam. And skinny people can get this condition, too. Just not as commonly. So I think it may be time to see another doctor, just for a fresh outlook.

I think in time, whether a doctor means to or not, they just become accostumed to the patient and start to miss symptoms that are right in front of their eyes. *shrugs*

Anyway, I hope this isn't happening with you and I hope you can find some relief. I'm glad the visit with Jen went well!

~Liz
 

---

Posted by Jay the Obscure (Member # 19) on :
 
My turn to update this thread.

On Monday, 12 June 2006, I had my latest MRI. The oncologist initially told me that it looked good but that there was a dot they were concerned about.

I spoke with the Radiation Oncologist on Wednesday after he and the Neurosurgeon looked at the films, or the cd since it�s digital, and the Radiation Oncologist told me that the dot was new tumor.

The treatments are either more surgery or a procedure called a Gamma Knife.

Apparently the Gamma Knife procedure involves focused radiation on the area in question and does not involve opening my head again. So, I have a date to have that procedure done on Wednesday 28, June 2006.
 

---

Posted by bX (Member # 419) on :
 
Plus, I mean: Gamma Knife? C'mon people.

Seriously, Jay, good luck.
 

---

Posted by Omega (Member # 91) on :
 

quote:

---

I think in time, whether a doctor means to or not, they just become accostumed to the patient and start to miss symptoms that are right in front of their eyes.

---

Well, no wonder he thinks your optic nerves aren't swolen, he's looking on the wrong side of your eye!
 

---

Posted by AndrewR (Member # 44) on :
 
Gamma Knife... sounds Dominion-ish.

Best of Luck Jay.
 

---

Posted by LOA (Member # 49) on :
 
Oh, jeez, Jay.... I'm so sorry..... I'll be praying for you....

~LOA
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Geez....
While I think that the "Gamma Knife thing sounds like an optional weapon in Metal Gear Solid, it also sounds as scary as modern science can get short of opening up your head again.

Aside from us, do you have a support network to talk to?
I ask because I know that it's hard to open up to family sometimes, as you dont want them worrying more than they already do (I lie to my mom and grandma all the time over my comparitivly trivial problem).
We're all here for you, but the stress you must be under is outside my own experience.


Sounds to me like the Gamma Knife is a really good way to proceed.

quote:

---

Gamma Knife surgery is recognized worldwide as the preferred treatment for brain tumors, arteriovenous malformations and brain dysfunctions such as trigeminal neuralgia. It is supported by over 2,500 peer reviewed research articles that are primarily published in neurosurgery journals. The Gamma Knife offers a non-invasive alternative for many patients for whom traditional brain surgery is not an option. Gamma Knife surgery removes the physical trauma and the majority of risks associated with conventional surgery. This effective single session treatment may require an overnight hospital stay, but is often done in an outpatient surgical setting with periodic follow-up. It has been proven safe over the long term and is recognized and covered by insurance plans.

The same as neurosurgery, the Gamma Knife allows noninvasive cerebral surgery to be performed in one session and with extreme precision, sparing tissues adjacent to the target.

---

I wonder why they did not use this the first time around?

So, it seems that this is a smaller tumor than before? Possibly they're destroying one before it becomes a life-threatening thing?

Man, I sure as hell hope so: no way can I dig up all that political stuff on my own!

While you're there, strapped in, go for as many Total Recall and other tough-guy-being-tortured lines as possible.
Oh! Do the sean Connery voice and say "Do you expect me to talk?"

Man, I wish I live close to your hospital, I'd wait untill you wre strapped in and drugged, then come by with my little cousin in Grey alien costume and some sci-fi props and give you some real nightmares.

But that's just me.
 

---

Posted by Peregrinus (Member # 504) on :
 
Forget your leg, Jason. I'd have them look t your head. It's obviously rotting from the inside out.

Well, Updates-Ya-Us (a literal reading of the backwards 'R' in the Toys-R-Us name).

I'm trying to figure out what the hell is going on with my Social Security. My state DSHS caseworker mentioned, while he was looking up something else, that it appeared my Social Security medical coverage had been approved. Couple days later, I got a letter sayng my appeal for SSI had been re-denied. I'm going in to my local SS office next Friday to present my case, and if that doesn't go anywhere, my step-father has secured a lawyer. They say they can't establish my condition back to October 2004, which is curious, because they never said anything about the history of my condition. They only wanted to know from my doctors if they believed it would be at least a year from my first application before I'd be able to work again. WTF?

And for the record, in October of 2004, I had already been waiting for a month to get in to see my first doctor in this Trek -- an appointment that I wouldn't have until late December. But in October, I was seriously starved, badly emaciated, and hauling around some twenty pounds (give or take) of edema. My chiropractor and my Hellerworker could both tell them that I was most definitely not well. But I don't know if their opinions count.

Yesterday was my last dose of the daptomycin.I am anxiously awaiting the ebbing of all my frikkin' side effects.They took blood for cultures last Wednesday, and I haven't heard anything yet. They've even called me on a Saturday morning -- when the clinic is closed -- to let me know of past positive results. I can only hope that 72 hours without a phone call means negative for staph. I had a strong hunch that when they pulled the old line, the staph was in there. I think another two-week round of dapto was then overkill, but I went along with it -- even though two months on powerful antibiotics don't just kill all the microorganisms, they start killing the macroorganism, too! Case in point: my previous commentary about when I went into hospital a couple weeks back... My bloodwork was in the basement and I had dropped from my pre-antibiotic 165 pounds to 154. By the time I left the hospital, four transfusions later, I was back up to 165. I am now hovering at 151, and my bloodwork is tumbling down the basement stairs again. The last time it got bed, I had been off the dapto for four days, so I don't expect miracles just by being off the antibiotics. I just hope I can turn this around without having to go into hospital again.

As for new perspectives, I have no less than six doctors -- three specialists and three primary-care physicians -- following my case. The gamus from naturopathic to allopathic is well-represented. My cousin's doctor for his Ulcerative Colitis said -- in Minneapolis -- that if you're going to get some form of IBD, Seattle is the best place to have it. One of the consultants on my case is a gastroenterologist who has been in practise for 25 years and is nationally known. He's the one who identified and located the fistula. He's only seen two other cases like mine in his career.

I'm also deriving great benefit from energy work, reiki, massage, and psychotherapy. I've got a lot of backed-up mental and emotional sludge that needs breaking up and expressing/resolving. Some from almost thirty years ago. This is a totally multifaceted treatment. I'm even learning Transcendental Meditation to help me with my persistant background stress and quick temper.

But I am absolutely through with antibiotics, thank you. If another infection pops up, I'm gonna find some other way. This shit was slowly killing me. And interfering with my ability to attend to other aspects of my treatment.

Jay, I'm glad they caught it early. Here's hoping there are no malfunctions with the Gamma Knife that give you uncontrollable superpowers, or turn you green or anything...

Jason, I don't lie to anybody about anything. Besides, while I'm dealing with all this, I'm living with my mom and step-dad. Hard to keep much from them, especially when I need the help of one or another of them to change out my meds and stuff each day, seeing as I am minus one arm due to the new PICC.

And Liz... I don't know if I'm falling prey to the human instinct for pattern recognition, but swollen optic nerves were a symptom of my condition, too. Actually, edema rather than inflammation, but they were bleached out, as well. I dunno. I just read that and went "hey...!" I hope this line of enquiry doen't turn out to be a red herring. You deserve some relief.

Healing mojo to all,
--Jonah
 

---

Posted by akb1979 (Member # 557) on :
 
Damn! I don't visit the place for a few months and all this happens!

Hey Jay, just wanted to say - all the best for the new treatment, will be thinking of you. Glad you're still here with us!
 

---

Posted by LOA (Member # 49) on :
 
Jonah~

Thanks for the concern, but I'm happy to report that according to my opthamologist, who I saw on Weds, my optic nerves are indeed not swollen. I DO have increased eye pressure though, which he cannot explain, but he said that could be a side effect of one of the many medications I'm on. He also cannot account for the major visual disturbances I've been having when I change from a sitting or laying position to a standing one and thinks it could be hypotension (or low blood pressure) but I'm not giving him too much credit for that as for the first time in MONTHS my blood pressure readings have actually been normal at every doctors appointment I've been to.

My Neuro and I had a long talk on Monday about all of my symptoms and he has a different take on my visual disturbances now, after talking with me. He feels that I could indeed have the Increased Intracranial Hypertension. As I pointed out to him, there have been multiple studies that show daily migraine patients who do not respond to any treatment and who do not have swollen optic nerves when tested for increased cerebral spinal fluid have a percentage who come back with pressures WAY above normal. Most of those people are morbidly obese, but not all of them.

Given my current position in life and my status in treatment, plus the numerous unexplained phenomenoa that are currently coinciding with my migraine disease, we're testing me with a spinal tap on Wednesday. I'm freakng out. A) I have no desire to go through a spinal tap, and B) I REALLY don't want to be diagnosed with this condition, but it IS going to eat at me until I know if I have it or not, because it's been eating at me already for weeks, so what will be will be.

Now if I could only get work to begin cooperating a little more with me. My new obsession is researching human resource law, including the Americans with Disabilities Act and the Family Medical Leave Act. I don't qualify for FMLA until November, but let me tell you - I'm getting ready to start sticking it to corporate America, beginning with the ADA. I'm not getting pushed around anymore, no way, no how.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Jason, I don't lie to anybody about anything. Besides, while I'm dealing with all this, I'm living with my mom and step-dad. Hard to keep much from them, especially when I need the help of one or another of them to change out my meds and stuff each day, seeing as I am minus one arm due to the new PICC.

---

Well, as long as you've got support- that's what's important.

Jay, let us know when everything's completed with the GK procedure- I'm rooting for ya!
I could probably send you some crazy voodoo cure if you like or mabye some books on CD to listen to whaile you're healing up- Stephen King short stories are really good for this, I find.

LOA, I'm hoping your doc finds it's something easily managed like low blood pressure or some imbalance that can just fix things- at least you'd know what was causing the migranes.

I think we all need to make tinfoil hats and worry about aliens the government and drink some beers.
 

---

Posted by akb1979 (Member # 557) on :
 
Damn, is everyone suffering these days?

Yeah LOA, hope everything goes well!

If I've missed anyone else in my well wishes - get well soon!
 

---

Posted by LOA (Member # 49) on :
 
I hate PICC lines. They have to put one in me whenever I need IV DHE. Yuck.

~Liz
 

---

Posted by Peregrinus (Member # 504) on :
 
Well, my central line was nice and convenient, and I kept it for over seven months before that damned persistent staph infection necessitated its removal.

On the other hand, I've known enough people who have had spinal taps to know it's no fun. I had to have five abdominal taps last fall because of the fluid buildup (couldn't breathe -- nowhere for my diaphragm to go), and that was funky enough. Make sure you have something comfortable for laying on your stomach for after. Something that keeps your back in a neutral or slightly stretched posture. A nicely padded massage table would work, but those are kinda pricey.

*raises a goblet* Here's to answers. Here's to solutions. Here's to healing. Here's to health.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by Peregrinus:
*raises a goblet* Here's to answers. Here's to solutions. Here's to healing. Here's to health.

---

Here's to sick time from work, insurance, painkillers and a cure.
 

---

Posted by B.J. (Member # 858) on :
 
My son had a spinal tap as an infant to rule out Meningitis for a bad ear infection. They sent my wife and I to another part of the hospital to wait. I know that he was shrieking his head off because when we got back, he was very tired and covered in sweat. I know that really doesn't help your freaking out, LOA, but you triggered that memory. Even though it didn't happen to me, I don't want to go through that ever again.
 

---

Posted by LOA (Member # 49) on :
 
Thanks, I feel a lot better about it now
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, if anyone ever tries playing that (awful) movie This is Spinal Tap you can kick their ass over the experience.
 

---

Posted by Lee (Member # 393) on :
 
Yes, just so long as they don't confuse inches and feet when setting the depth for the tap, you'll be fine. 8)
 

---

Posted by Sol System (Member # 30) on :
 

quote:

---

Originally posted by Jason Abbadon:
that (awful) movie This is Spinal Tap

---

You've lost the internet. Please drive safely.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
HA! I also cant stand Monty Python!
Any of it! BWHAHAHAAH!!!

Now I'm one of those "social pinata's" you were speaking of earlier....
 

---

Posted by Shik (Member # 343) on :
 
And I thought I was well on the road to Cantankerous Old Man-itude. Jason must be that disappearing/reappearing blip I keep seeing far up on the horizon.
 

---

Posted by Da_bang80 (Member # 528) on :
 
"He also cannot account for the major visual disturbances I've been having when I change from a sitting or laying position to a standing one"

I don't know if it's the same as yours, but I get that once in a while. The first time it happened was on my first day of work, but I was standing when it happened. My vision went totally black and I almost fell over from the dizziness, and I couldn't remember where I was for a few seconds.

It was actually kind of scary
 

---

Posted by Jason Abbadon (Member # 882) on :
 
It's those three martini lunches of yours.
 

---

Posted by LOA (Member # 49) on :
 
Da_bang80~

No, it's not like that...I know what you're talking about because I've had that happen before if I sit up too quick or something, but this is more irritating than scary.

It's hard to explain, but it's almost like a variation on double vision... this is the best way I can describe it - you know how you can set windows to put a "trail" on your mouse pointer? So whenever you move the pointer across the screen, there's a long trail of little pointers following along behind it? That's what I get in my vision, but I have that trail on everything. If I move my head or eyes at all, there's a trail in my vision. I used to only get it whenever I'd get up from a laying down position, but now I get it all the time, sitting up, laying down, standing - even while driving. And it's getting worse.

My opthamologist says it's not anything with my eyes. He said it's probably extremely low blood pressure, but that's actually been normal for last last few months, so I'm not buying into that. So we'll see. Visual distrbances such as that are a side effect of increased intracranial hypertension. My spinal tap is in a few hours. I should know something then.

It's pretty freaky-deaky though.

~LOA
 

---

Posted by Shik (Member # 343) on :
 
Stop taking acid. Problem solved.
 

---

Posted by bX (Member # 419) on :
 
Shamefully, I was thinking the same thing.

No, but as someone who gets the odd migraine, the prospect of daily incidence is certainly cause for sympathy. I was able to figure my triggers and where possible, avoid them (always with the sunglasses), but it sounds like there are no triggers other than breathing and that's fairly tricky to get around. I know Spokane is essentially dessert, and there was Alaska, have you tried more humid/tropoical climes? Perhaps visiting Jason wouldn't be such a bad idea.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Yesssss....."visit" with me.

You can come by for a hurricane party or three and then fly back before the storm hits (or stay for the fun and leave once the airport is repaired).
Remember: Ladies drink free if it's category Three (or greater)!

It's currently a temperate 80 degrees and only 40% humidity- almost jacket weather.
 

---

Posted by Ritten (Member # 417) on :
 
83 degrees and about 50% humidity and we are uncomfortable here.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Really? It's an aquired taste, I find.
When I travel to dry climates, I generally feel uneasy and then, upon returning home, feel a profound sense of relief and beonging.

Of course, I like the heat....
 

---

Posted by AndrewR (Member # 44) on :
 

quote:

---

Originally posted by bX:
Shamefully, I was thinking the same thing.

I know Spokane is essentially dessert

---

What is Main Course? Seattle?
 

---

Posted by bX (Member # 419) on :
 
Dammit.
 

---

Posted by LOA (Member # 49) on :
 
I've tried Memphis.... does that count as humid enough? Only for 10 days at a time, but in the middle of the summer, that was enough of the humidity for me! :-)
 

---

Posted by Hobbes (Member # 138) on :
 
Fuck the humidity. I don't mind heat. I love San Diego weather, low humidity and in the upper 70's during the day and lower 60's at night.
 

---

Posted by Shik (Member # 343) on :
 
You people are weird.

I'm thnking about moving again, the criteria this time being to get so remote from anyone I might know that if they wanted to visit me, it would be a lengthy haul & not worth the effort. This is different than the previosu criteria, which was "who do I know where?"

The previous one had many choices; this one...not so much. But Ithink I've narrowed it down (in descending order) to Montana, northern Vermont, or Hawaii.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Good luck with Hawaii- the job market there is nigh-impossible.
There's a two year waiting list for transfers there with my company.
For that yo could just move to Florida (though the west coast is preferable right now for housing and english speakers).

Montana sounds cool, in an antisocial backwoods kinda way.
 

---

Posted by Shik (Member # 343) on :
 
I really don't want Hawaii; it was my mother's suggetsion based on "toleration of lifestyle." Montana seems perfect...but more infromation is required.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
The Sci-Fi Lifestyle?
The "dont ask about my legal history" lifestyle?

Or is it...that ...problem...you have with aquariums?
'Cause that's just sick and wrong.
 

---

Posted by Peregrinus (Member # 504) on :
 
Forget all that! Liz... you've returned. How went the procedure, and when will you have results?

Me, I'm still trying to shake the aftereffects of the antibiotics out of my system. The dapto really threw off my acid-alkaline balance. I'm going in for another CT scan next week, but my first set of cultures was seven days negative, so that's a confirmed sterile. My doc ordered another set after I was off the antibiotics to confirm, but I haven't heard anything yet, and positives usually show up within 24 hours. It's been four days so far and no phone call, so I think the staph infection is indeed gone.

Here's hoping you get equally good (or atleast useful) news, Liz...

--Jonah
 

---

Posted by Hobbes (Member # 138) on :
 
Hawaii's nice. I lived there for about 4 years. I would love go live there again.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
But you had to leave when Robin Masters finally returned home and sicced the Lads on you, right?

Plus, that jerk Don Bellasario kept killing off all your girlfriends-of-the-week.
...and what was up with that little vietnamese girl? I mean, was she your kid or what?
 

---

Posted by Lee (Member # 393) on :
 
If there was any justice in the world, that Quantum Leap crossover would totally have happened.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I totally agree.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
Just back from the hospital.

I'll be having, I think, another MRI in 3 months to see if the procedure worked.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
But you're overall okay now?
I mean, you dont have any symptoms or signs that things are getting bad, do you?

I saw my own doctor today and got an earful of resident-babblr about how I need to consider the psychological stress I'm under and how I really need to get into a support group or talk to family or something...

As upsetting was my doc saying he's all oout of ideas, and that I should look into my local area for a hyperbaric chamber (sp?), becuse "that's shown good results with this kind of thing.."

But I can tell he's pulling ideas out of his ass.

AND I'm turning 33 on Tuesday!
Great: I'm an old, one legged, girlfriend-less Star Trek geek.
(sigh)
 

---

Posted by Jay the Obscure (Member # 19) on :
 
I feel fine.

It was a radiation procedure...the only marks were from how they secured the frame to my head.

Like I said, we'll just have to wait and see.
 

---

Posted by The_Tom (Member # 38) on :
 
Er, wow. Guy goes away for a while and gets totally upstaged. I've got nothing on that.
 

---

Posted by Ritten (Member # 417) on :
 
Only way to top them is to actually die, and that seems a bit drastic, even for me.
 

---

Posted by B.J. (Member # 858) on :
 
I don't think we've had any regulars around here do that yet. Although, it is kind of hard to tell sometimes whether I'm talking with a real person or a corpse, depending on the conversation.
 

---

Posted by LOA (Member # 49) on :
 
Well, the results are back from the mayhem that was my spinal tap.

First of all, can I just say that while I'm not a fan of ANYONE using medications or drugs for recreational uses, the anxiety medication that my doctor gave me to tranquilize me before the big LP was some MIGHTY fine stuff. It really made the entire experience (what I remember of it!) much more bearable!

I don't have increased intracranial hypertension. This is both good and bad, depending on how you look at it. The good part of it is that I don't have IIH. Yay! The bad part is that we still don't have any one thing we can peg down as The Thing that is causing my headaches and other medical issues. So that sucks.

Also, my spinal fluid was checked for meningitis and abnormalities that would signify cancers, tumor growth, and other ailments - all of those tests came back normal. Again, this is a good thing in that there's nothing in my body that's slowly killing me that I don't know about, but it's a bad thing because I'm still just this random enigma of daily headaches that medications cannot control.

Aside from that, I managed to be one of the lucky few who after my spinal tap developed a spinal headache. What that meant was that the hole they poked into my spinal cavity didn't close up and heal like it should have, and it leaked cerebral spinal fluid for well over a week. If I sat up, stood up, or moveed around, I would get a headache unlike ANYTHING I can describe to you, and painkillers couldn't even dent this pain. As long as I laid down, the pain was pretty much non-existant. So, I spent most of my time in bed for over a week. Fun, huh? Got a lot of reading done! And a lot of napping.

Current plan of action: We upped my Zonegran (epilepsy medication) to 4x the dosage I started on. This is a maximum dose. It hasn't helped yet, and still isn't helping, but it's causing great weight loss, so the vein female side of me is okay with this. My Neuro also put me on Periactin, with is an antihistimine. Crazy, I know, but apparently for some people it helps. I has NOT helped my migraines yet, but my allergies have been SOOO much better. This makes my Allegra and Allegra-D both look like pussy-drugs! Of course, I'm still on the trazodone (anti-depressant) to help me sleep - this also, theoretically, will help my headaches. Not yet, but I'm sleeping finally. Plus my gyno switched my birth control for a few weeks to see if my headaches changed - I'm not sure if that helped or if it was coincidental, but I DID have a few days that were better. This was short lives, and I also and retaining a lot of water and am irritable. Pisser.

All in all, between my multiple presciptions I'm taking something like 14 regularly scheduled pills a day, and I have 12 prescriptions total right now. It's a grand life.

Oh! And I've started charting! I'm making charts for my doctor of my migraine intensity each day upon waking, and at it's peak, and also the time of day. Yes, I am high tech, and he will now see my Excel mastery in action. Bwahahaha. You've now been updated.
 

---

Posted by Peregrinus (Member # 504) on :
 
Well...

Here, I was hoping one of us would actually have things come together and find the magic bullet. Dang. Mixed news all round, but I'm glad you've been able to have a few nice days. Isn't sleep wonderful?

Not much new at my end. Still rebounding after six weeks on some nasty antibiotics. Energy is coming back, but my stamina is still shot. My appetite is back, but my stomach shrank during those six weeks, and I'm not enjoying trying to get used to eating and drinking again. I'm still almost twenty pounds les than I weighed in April -- which is about thirty-five pounds underweight for me. I hate losing ground.

So what's next, Liz?

--Jonah
 

---

Posted by LOA (Member # 49) on :
 
Next?

I don't know. I really don't.

That's why I've begung the charts. I'm hoping that some sort of magic trigger or pattern or something comes of it. So far, nothing, but it's only been about 3 weeks.

The visual disturbances are getting worse, but I'm having a hard time researching them because I don't know what to CALL them.

I'm contemplating going through a barage of serious hormone testing to see what that turns up, but that's going to be tough on my body all around - two months without birth control to start with (the birth control is the only thing regulating my hormones right now...) and then from there, according to my gyno we'd do some major hormone and glucose testing, but she said is very uncomfortable and drawn out, and not always accurate, and kind of a last ditch stop.

I feel like I'm at that point though.

I'm going to talk to my Neuro about it and my PCP when I see them next. My next visit to the gyno is in August, so I'd start it then if I go through with it. My only thing turning me away from it is the fact that it's not very accurate - going through hell and back for mixed results that I can't necessarily trust? Not so sure I like those odds.

As far as on the Neuro front, there's still something like 45 meds left to try on their own, plus we can start combining meds... the problem is, I'm getting more and more into the fringe with every prescription.

I think next we're just going to add a beta-blocker to my regimin and see what happens. I had some temporary positive results from beta-blockers in the past (Inderal/Propranolol) but I also had the bad side effect of blacking out, so I wasn't able to drive the entire time I was taking them. This is a problem for someone with a job, school, and multiple doctors appointments to get to. Before, I wasn't in school and I was on disability, plus I had my boyfriend and 2 roommates to act as my chauffer.... it was easier to not drive. Now it's a bit more difficult. But I will make it work, somehow.

Also, I'm contemplating a request for another MRI, though my last one was only a year and a half ago. I know that statisticly, odds are slim that anyting has changed since then, but I don't like the fact that I keep getting more and more "unclassifiable" symptoms and I can't see what's going on with my brain. If something Very Bad is going on up there, I wanna know!

So we'll see.

I see my neuro again on Monday. Right now though, I'm kinda worn out on the entire thing and feeling like we're just grasping at straws.

Glad to hear that your energy is coming back and you're putting on weight, though I'm sure it is tough gettingused to food again. We're all just a bunch of gimps around here, ya know that? We should rename this place... we can call it Gimps Annonymous ;-)

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I'll be Co-Chairman!

Well...that's it.
My doctor is now officially just a source for painkillers.
He's said he's all out of ideas and thinks that, while my wound is not any smaller, the fact that, despite it's starting to hurt worse, it not having gotten any larger is "a good sign".

He wants me to look around my area to find a hospital with a Hyperbaric (sp?) chamber.
The treatment would be four hours in the chamber- it being filled with pressurized 100% oxygen (just like the Gemini asronauts!) that (supposedly) accelerates wound healing drasticly.

But the treatments call for four to six times each week. Four hours each day.
That would mean, treatments first thing in the morning, then working for eight-10 hours, sleep and them doing it all over the next day....

If that's what it takes, I'll do it, but I'm...
I dont know...discouraged? Not hopeful?
THe sheer lack of enthuasim on my doctor's part is discouraging.

I'm definitely tired of the whole "we've tried everything line of doubletalk from my doctor, and the endless stream of residents that line up to see my leg when I go for an appointment.

Plus, I just took my Chemo and have to work 16 hours tomorrow...so I'm kinda gripey just now.
 

---

Posted by B.J. (Member # 858) on :
 
Good Lord. How much do you people spend on prescriptions anyway?

All this makes my endless kidney stones seem like a walk in the park.
 

---

Posted by Chris (Member # 71) on :
 
I feel like the healthiest person on the planet reading this thread. And that's saying a lot.
 

---

Posted by LOA (Member # 49) on :
 
Oh, Jason... I'm sorry to hear that you're having such troubles... I can understand why you'd just be tired of it all now... I would be, too.

As for the cost of prescriptions each year, so far this year I believe my insurance has paid about $4K for prescriptions, and I've paid another $400 in copays. Thankfully, I have VERY good insurance. Also, thankfully, almost all of the medications I use are available as a generic, and my doctors will allow me to USE the generics. That saves me and my insurance company a TON of money.

For office visit copays, I've paid out about $500, and I've paid about $300 for hospital stay copays. I'm not even sure how much I've paid for my labwork and testing portions as not all of that is covered by my insurance. My insurance has paid more than I even want to know in office visit fees, seeing that I mostly only see specialists, I know my insurance paid almost $10K for my hospital stay when all was said and done. My various lab work and everything? It's in the thousands... easily.

Moral of the story? I pay dearly for my insurance, but it's worth every penny because they pay dearly to insure me. I couldn't survive without it. Even with the coverage though, I can barely afford to be this sick... we're only halfway through the year, and I'm still waiting on some bills for my portion of some labwork. Gak. That's the stuff that kills me - labwork and testing.

And none of this counts my vision and dental, which has also been high this year because my prescriptions have caused vision and dental problems. WTF. That SUCKS!

But I can't complain... at least I have insurance, and I'm able to work - I'm light years ahead of where I was last year. I was on unpaid disability for 6 months last year because of these headaches. I'm STILL trying to catch up those bills.... and I'm still a lot luckier than many people. I know that, and I'm not complaining. It's all just part of being sick. The trick is just keeping the job and the insurance
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Insurane has been areal life-saver for me also, but last year I was spending between $300-$500 each month on out-of-pocket uncovered expenses.

This year, my insurance said I could get my supplies all covered by a company called edge Park- they'd send them all right to my house.

Which they did....once. Then they decided that it was all "over the counter" stuff and that my insurance should not be paying for any of it.
Despite my having prescriptions for it all!

I've got an agent at BlueCross fighting for me on this, but it's 50/50% weither I'll have to go back to paying all that myself.

I'm crossing my fingers on that one- just the Zinc Oxide and Telfa I use each day (to cover my wound and aproximate skin) is about $8.00.
Shit adds up at the end of the month.

Luckily, I've had my prescriptions lowered (they did nothing anyway) to only abouut $75 (out of pocket) monthly, from last year's $200.

LOA, have you tried Googling for "headache related vision problems"?
There seems to be a lot on the subject (though that's just more to sift through, I know).
 

---

Posted by LOA (Member # 49) on :
 
Jason~

I have tried that, and the problem is, I can't find my specific sympton listed anywhere.

My opthamologist thought I was crazy when I told him what was going on at my appointment last month, and he told me that I just had hypotension causing the issues. My PCP and my Neuro have both told me that's not possible - my blood pressure is the best it's ever been and I don't have any of the other symptoms of hypotension. Besides, that particular symptom is not present in Hypotension in the research I've done.

If I could find a name for my symptom, it would help.

My Neuro has heard of people complaining of the same thing, but it's always been a side effect of medication - in my case, we've switched out all of my meds, but the side effect is not only still present, but getting a lot worse. So I'm thinking it's probably not from the meds.

It's very frustrating.

I'll talk to him about it again tomorrow. It's going to be a long appointment. He LOVES long appointments. :-) Thanks for your help though... Lord knows, more brains is better than just my own right now!
 

---

Posted by Hobbes (Member # 138) on :
 
Man, veteran benefits are great when reading some of this. I hardly go to the hospital...like once in over two years. Thankfully the visits are free and medication $8 per prescription.
 

---

Posted by Ritten (Member # 417) on :
 
Hobbes, what king of vet bennies have you got? I thought you were still in.
 

---

Posted by LOA (Member # 49) on :
 
I had my bi-weekly Neuro appointment yesterday. It could have gone better. We talked about the visual disturbances. The doctor, who is one of the best in the state, said he's never ever had a patient complain of anything like what I'm describing outside of it being a medication side effect, specific to one particular medication, Topamax, which I've been off for months. He said usually when he takes patients off of that drug, once it's out of their system (about a week) the visual issues are gone and never manifest themselves again. In my case, they are not only still here, but getting worse.

We discussed the possibility of another medication causing it. Not likely because we have changed all of my medication 3x over since the vision problems started.

I asked if it was a possible opthomalgic issue, even though my opthomalgist ruled it out. He said no. It's definately related to my brain.

We discussed the possiblity that somehow, even though we've changed all of my medications, we have put me back on medications by coincidence that keep causing the same side effect in me. This is highly unlikely and would be an amazing coincidence, but something to consider.

We also discussed the possibility the Something Else is the cause.

The vision problems may or may not be migraine disease related - they do not correlate with my headaches, but migraine disease is a neugological condition, and the headache is just a symptom of the disease, so it's hard to say. The problem is, he's never in all of his years of dealing with migrane patients, has someone like me.

I'm having this problem off and on throughout the day now though, both when lying down and upright. Luckily, I haven't had the problem yet at work, but many times at home, several times while out with my boyfriend, and a few times while driving. Instead of double vision, I suddenly see 7 or 8 ghost images trailing behind everything I look at... it's very disorienting. Luckily, I can still sort of predict when it's going to happen, but I'm losing faith in that as the problem gets worse.

The new plan of action: I have an MRI scheduled for next week to rule out a brain tumor/blood clot/aneurysm/stroke/etc. Most likely it will come back with normal results as I just had one 1.5 years ago, but we still have to check before we make some of the next steps... also, we are cutting ALL of my medications out. Starting this week with my sleeping pill. After that, it will be my preventatives, one by one. Eventually, I will be left with no medications. No allergy meds, birth control, migraine meds, nothing. As we're doing this, we're going to go slowly and one at a time to see at what point, if any, the visual problems stop or change. This is going to be hard on my body as my allergy meds and birth control are controlling other medical issues that I'd rather not deal with that ALSO contribute to my migrainse, so my body will pretty much be a loose cannon again, but I will do as my doctor says, because I don't want to get to the next phase.

If, once I'm off of everything, there is still no change in the visual disturbances, I will be allowed to go BACK on the allergy medications and birth control. We will re-evaluate my preventatives and sleeping pills and generate a new plan for those. And an appointment will be made for me at the Mayo Clinic in Scottsdale, AZ.

This is something I don't want to do. Even though the visual disturbances are a problem and they are screwing with my life and just getting worse, going to the Mayo Clinic is something that financially, I just can't even fathom trying to do. There's airfare to consider, hotel accomodations, transportation in Scottsdale, and the cost of going to the Clinic, as my insurance won't cover it. I'm still so far in debt from last year's medical bills and from not working for 6 months that I can't even imagine taking on this burden. So we'll see what happens from here. What will be will be. That's all I can say....

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Wow. that. sucks.

I was thinking that, rather than a sole perscription causing these visual disturbances, it might be the particular combonation of meds with your chemistry that are causing it.

I read somewhere online that taking painkillers (and illegal drugs) for long periods of time can permanantly alter how your body deals with other incoming drugs, and that a lot of new drugs are not (can not be) tested for combonation reactions with multiple drugs- there's just too many possible combonations.

Hopefully the disturbances will stop completely once you're off the meds. It's definitely going to be hard on you, kicking everything all at once.

quote:

---

The problem is, he's never in all of his years of dealing with migrane patients, has someone like me.

---

Oh yes. I know that crap. Noting like a doctor to find medical novelty in your suffering, is there?

I've looked into places like the Mayom Clinic and Bethesda Hospital, but it's impossible to just call up, get someone that knows anything on the phone and work something out- particularly when you're already seeing a big "specialist".
 

---

Posted by AndrewR (Member # 44) on :
 
Just a stab in the dark - have you been tested for any sort of infection of your menengies or optic nerve??

Also - the side effect sounds like LSD effects... Are you going to start "hanging around" golden gate park in a white robe?

Another thing even though it probably does not contraindicate with any prescription medicine - do you drink/imbibe caffine or nicotine?
 

---

Posted by LOA (Member # 49) on :
 
"I was thinking that, rather than a sole perscription causing these visual disturbances, it might be the particular combonation of meds with your chemistry that are causing it."

Could be, but honestly, I take very few pain killers... I mean, I've got the 'scripts for them, and I've got access to them, but I really very rarely take them anymore - maybe 4-5 days a month, tops, and I hardly ever take more than one dose. I just am sick of poisoning my body with painkillers, so I don't anymore - besides, they aren't effective anymore, and I didn't want to up my prescription strength, so I just stopped taking them for the most part. That doesn't mean there's no validity to what you're saying - it just means that compared to a lot of chronic pain patients, I'm awfully tough

"Also - the side effect sounds like LSD effects... Are you going to start "hanging around" golden gate park in a white robe? [Smile] "

Don't you mean LDS? It's funny you should day that, because one of the medications that I do take for extreme pain, dihydroergotomine, or DHE 45, will actually test positive as LSD if I'm given a drug test. I don't know why exactly, but that's why Elvist tested postive for LSD on his autopsy - he had DHE 45 in his system.

"Another thing even though it probably does not contraindicate with any prescription medicine - do you drink/imbibe caffine or nicotine?"

Absolutely no nicotine (not even second hand now that smoking is not allowed in public places in WA!) and very little caffine - Caffine can trigger migraines, theoreticly, so I avoid it. Occasionally I'll have a Pepsi or a single shot espresso when I'm in the middle of a migraine attack, but that's because when the migraine is actually happening, caffine can actually HALT it, too. Figure that out. It can cause it and it can stop it. Weird science at it's best, I tell you what....!

"I've looked into places like the Mayom Clinic and Bethesda Hospital, but it's impossible to just call up, get someone that knows anything on the phone and work something out- particularly when you're already seeing a big "specialist"."

Truthfully, I have no desire to go to Mayo - I've heard bad things about the Clinic from people in my migraine support group who have gone there for their headaches. However, it IS high tech and cutting edge, there's no doubt about that. Most of the negativity that I've heard deals with the way they prescribe medications (or actually don't), but since I don't WANT more meds, I guess that's not really a problem for me.... Dr. Wurst has sent patients there before, so he has a working relationship with the clinic, I guess. His office would make the arrangements for my appointment and getting my charts down there and all of that. I just don't want to get to that point. I'm hoping we can figure something out locally. I'd really just rather deal with stuff in-house than pay all that money to travel down there.....

~Liz
 

---

Posted by Shik (Member # 343) on :
 
Find large rock. Apply liberally to skull repeatedly. Problem solved.
 

---

Posted by Ritten (Member # 417) on :
 
Doc Wurst..... I am leary already.

Shik, I am not sure that is a good idea, maybe a small rock would work just as well and be easier to hang on to.
 

---

Posted by LOA (Member # 49) on :
 
I have a couple of doctors with great names...

Dr Wurst

Dr Manson

And my favorite was my old gyno - Dr Joy

Though my friend had an even better gyno - Dr Beaver.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Poor guy- stuck in a predestnation paradox that way....
 

---

Posted by Jason Abbadon (Member # 882) on :
 
So...anyone heard from Jay?
Hope it's clear and cancer-free on his tests.
 

---

Posted by Ritten (Member # 417) on :
 
He was here yesterday, posted in Misc. Musings.

Three times in a row.

[edit]
Day before that as it is after midnight here.
[/edit]
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Cool that he's kickin'....
Hey jerkass! How 'bout an update?
 

---

Posted by LOA (Member # 49) on :
 
hehehe....he said "jerkass".....
 

---

Posted by Ritten (Member # 417) on :
 
Maybe he doesn't want to be musing about his medical?
 

---

Posted by Jay the Obscure (Member # 19) on :
 

quote:

---

Originally posted by Ritten:
Maybe he doesn't want to be musing about his medical?

---

quote:

---

Originally posted by Lee:
But she's just tired of being a medical case all the time. She's been through a lot, she figures karma owes her a thing or two at this point. So far, amazingly, she somehow manages to view falling in love with me as a positive event in her life. . .

---

quote:

---

From what you've said and the things you've aluded to over the years, you have been an amazing husband and companion to your wife. I don't think you give yourself the credit you deserve for that. So many people would have turned and run by now... if you look at her history, there may very well BE friends or family member that just couldn't take her illnesses anymore and DID turn and run. That's a difficult thing to endure, but it's something that you have never done. This Speaks volumes for you as a man and as a husband.

---

quote:

---

Originally posted by Peregrinus:
Heading out now to spend the night in Seattle. Have to be at the hospital by 6:30am, surgery at 8:00am. Should be in for five days to a week. If anyone feels like it, go to the Swedish Hospital site and send an e-mail -- it'll get delivered to me in my room (although I don't know which room I'll be in).

---

Hey Jonah,

Damn, I could maybe even have visited you there. My grandfather is at Swedish recovering from his surgery. Though I would have been (one hopes understandably) distracted. Swedish seems to do good work and seem to provide excellent care. Hope your recovery goes smoothly and that you are OK.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
Well, as I understand it the tumor nodule was what was shrinking and being replaced with scar tissue.
 

---

Posted by Chris (Member # 71) on :
 
Oh, in case anyone wants to send Jonah an email at the Swedish Hospital, he's at the First Hill campus in room 719 7SW.
 

---

Posted by Ritten (Member # 417) on :
 
I sent him one.
 

---

Posted by Peregrinus (Member # 504) on :
 
And I got it. Thanks to those of you who waded through the process and sent me missives. Made my day a couple times. So I went in to have my appendix out, and they went rather overboard...

Not really, but it's how I like to think of it. Lost twelve inches of my colon, and they had to do some vigorous chisling to get the fistula mass out. I got home last night, and am getting caught back up on my life again. I've got a wound-vac on the incision site to accelerate healing. It's odd when the dressing gets changed to look down and see a five-inch-long gash running down my belly, but I'm coping. I should be healed beyond the need for dressings -- and off the TPN -- in a couple months at the outside.

I now have no medical restrictions on my diet, save for eliminating the triggers (grains and dairy, mostly) to continue healing.

From here we'll see, but things are promising.

Lee, B.J.... I can sympathise and empathise. It hasn't been easy for my folks to deal with my moodiness through all this.

And Liz, if you need crash space when you first get out here...

--Jonah
 

---

Posted by Charles Capps (Member # 9) on :
 
I never want to hear the phrase "chisling" and "colon" together again. Yegods, man.
 

---

Posted by Lee (Member # 393) on :
 
My wossname is revolving.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Fuuuuuck.

Blue Cross is denying any coverage for Hyperbaric Oxygen Treatment.

Goes like this so far:
Two motherfucking months ago:
My leg continues to get worse- I notice by the large amount of blood oozing out of it while I'm working.
I go to my Doctor and tell him to take me off Chemotherapy and steorids- as they make me sick and do nothing for me.
Doc decides that the only thing he can come up with to maybe work is Hyperbaric Oxygen Treatment- he'll have to write a letter to Bluecross explaining this to get apporval.
-Chemo is dropped and steroids cut back on (you have to gradually stop those- the lack of which in yor system makes you feel like total ass for a week or so each time the dosage is lowered).

One month ago: After a months of both myself and my BC rep calling the doctor's office, no letter is written requesting the new treatment.
-no calls are returned to me or B.C. either by doc's nurse.
I have my scheduled appointment and raise hell.
-My wound is worse (larger).
Doc says he'll take care of it- there's some woman they have just to write the official letters.
-Finally the letter is submitted to B.C.
-B.C. says (though not to me) the letter is vague (only a paragraph long) and they need more information on my case to authorize treatment (in my case, everything is "experimetal" due to the disease's rarity).
The month passes with more calls to the Doctor's office from myself and my BC rep to no avail.

One week ago:
-Scheduled appointment- My leg wound is several centimeters worse (now reaching my outer calf).
I raise hell- I get B.C. on my cell-phone and hand the phone to my Doctor. He gets people talking to each other but the woman (only one!) from B.C. that has been calling for information is on vacation for the day.
Monday- Doc's office and B.C. finally talk and the result is....

I'm denied coverage.

Now, I have to write a letter stating why my leg should not just be allowed to rot off and my Doctor has to write (himself) a letter explaining why healing my leg is important to my overall health.
I plan on waiting in the doctor's office tomorrow morning and getting very....loud...if I have to untill this is accomplished.

This is why desperate people take hostages- this level of frustration.

I really really dont know what the fuck I'm going to do if this appeal does not work.
 

---

Posted by Shik (Member # 343) on :
 
Why not just cut the damned thing off & be done with it? Really.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Because there's no guarentee that the stump would not develop the exact same (non-healing) problem.
,,,and then you get some bad joke about "just taking off a little bit more"...
 

---

Posted by B.J. (Member # 858) on :
 
I'd wait in the doctor's office with that wound uncovered. They'd probably move a lot quicker if you were making everyone else in the office sick from the sight of it.
 

---

Posted by bX (Member # 419) on :
 
Maybe send some macro snaps in to your BC rep, you know so they can better appraise the situation and decide whether you really need the procedure. Maybe one or two a day, printed out, of course. At a print shop. Posters might be going too far...
 

---

Posted by LOA (Member # 49) on :
 
I hate asking this because I hate it when people ask me... I hate it more than ANYTHING. But are you sure there's no other doctor you can see who might be able to help you more effectively? I know how hard it is to change doctors, and to find a specialist in something that no one has enough experience to truly specialize in, but I just feel like your doctor is dropping the ball on you, and I wish that I could help... I hate not being able to.

I hope and pray that you can get insurance company approval and that this all gets better for you soon. Lord knows you deserve it at this point. Please keep us updated....

~Liz
 

---

Posted by AndrewR (Member # 44) on :
 
Gawd Jason - that totally and utterly sucks. I'm dumb-founded. Gah!?! We live in a day and age where people shouldn't just have to suffer like that - is it something that is treatable!?! Grrrr!

You need a sugah-daddy.
 

---

Posted by Nim (Member # 205) on :
 

quote:

---

Swedish is on my list of fun places I may visit sometime soon in my never ending quest to end these horrific migraines.

---

*sigh* Ok, no point in keeping up this charade. Yes, I am swedish.
Grr, I give up, I hereby give you access to my aura and rejuvenating sweat, in fact any flareite who needs healing can call out to me.
I first go through the foot rub, the "scanian runner" over the back, then awesome massage of the temples and neck, ending with a classic "half-eaten samosa" that leaves you breathless.
My sweat can and will be used as emollient lotion. Also available for sale as perfume, "Homme de navet".

Hope you're happy now, flare.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
"Nim's Patented Swedish Funk: available wherever Ricolla is sold..."

So, the best laid plans of mice and ...er...me, do oft go arwy, and I found myself in a world of sleepless pain last night.
This is readily solved by a combonation of Percocet, Methadone and (strangely enough) Pina Collada drink (the sugar activates the drugs).
Annnnnd I overslept a bit. four hours
I did manage to call several times and explain my situation and needs to the nurse's answering machine- no reply as of yet.

Worse still- I have to work the next two days in the mornings (7-7pm shift) and, while that precludes any ranting in the waiting room, it does allow me a chance to schedule a real appointment with my Doctor (if I raise hell with the poor scheduling woman that has minimal english skills, yet is in charge of calling paitents- she cals me "Yeason Cawwell").

LOA, I tried seeing other doctors (closer to home and with years of experience) and they all tell me to go to Cedars Hospital because only they deal in exotic crap like mine.
My doctor runs the dermatology department at Cedars: all my (local) referrals go in a big circle.
I have yet to grasp the art of contating specialists in other hospitals abroad without a doctor's referral- it's a brick wall of bueracracy that would make the IRS proud.
Also, when inquiring about dermatologists, there is the difficulty in sifting through the majority that deal with acne or botox for a living- surgical dermatology is far more rare and stuff dealing with unusual/severe cases, even moreso.

Going through Blue Cross, only gives me lists of available (covered) doctors.

Going online yields two kinds of results- the ones that start out with "Not much is known about pyoderma gangrenosum..." or "...was cured by (insert treatment I allready failed) in a few months".

I think I may have to look at this from another angle and start ruling out the disease's most likely causes with specialists in those fields to be certain the tests performed on me to rule them out were not in error somehow.
That means getting re-tested for Diabetes, Cancer and Chrohn's Disease/Inflamatory Bowel Syndrome (almost certainly not this last- my stomach's fine and I can crap...er...like a fox?).

Or I could go the route my doctor and I tried last time the insurance company balked at a treatment (for Humeria): stick me in the hospital for a week and let them eat several thousand dollars of I.V. meds and special request room-service (Cedars makes a mean cheeseburger but what they call french fries is a culinary crime).

Anyone got any good news?
Loa? You feeling better (hopefully!)?
 

---

Posted by AndrewR (Member # 44) on :
 
You need to visit House M.D.
 

---

Posted by LOA (Member # 49) on :
 
Thanks for asking, though I hesitate to post on my current condition for fear of angering the Health and Wellness Gnomes...

In August, I went two weeks straight with excrutiating head pain (read: I would have given anything for a gun to put to my head on several occasions) and so my doctor put me out of work on Short Term Disability. Again.

In this timeframe, there was a major revamp of my medication - we kept me on everything I was already on and added propranolol, which is a beta-blocker. I've had luck with propranolol before, but I had to stop taking it because it lowered my blood pressure so much that I was passing out. This time, I'm on a lower dose, but we're still hoping for headache control. Also, we talked about another hospital stay. I declined due to cost, comfort, and the fact that as soon as I LEAVE the hospital, the pain already returns. Instead of hospital time, my doctor allowed me to start taking the hospital medications at home. So my boyfriend learned how to give me injections of DHE in my keester to help break the spell. The DHE helped, but still wasn't enough to break this acute and extreme attack. Desperate to break it, my doctor also put me on a steroid burst and a burst of Midrin, which is a combo drug, including a vaso constrictor. All of these meds, in combination with my OTHER daily meds, finally broke the attack, and I was able to return to work last week.

In the midst of all of this though, all hell began to break loose at the pharmacy. My pharmaceutical company decided that I can no longer get retail fills on my medications. Don't ask, I don't want to talk about it. This is an issue that I'm still fighting. They're forcing me to get a 90 day supply of everything through mail-order now though - this is great for meds that I take for 90 days at a time, or for meds that I know I will need in advance. The problem is, I don't take ANYTHING for a full 3 months, and there are a LOT of meds that I only get prescribed in the middle of an acute attack. I can't just wait 7-10 days for those to be delivered when I'm in excrutiating pain. So it's an issue.

Anyway, enough bitching about the pharmacy. Since we broke this last spell and got me up to my dose on propranolol, I've been doing much better. I've gone from daily pain of an 8 or higher on the pain scale to pain topping at a 4 for over a week. This is a borderline miracle. All without ANY pain medications in the last week. As I said, I hate to talk about how well I'm feeling, for fear of jinxing it, but truly, this is the best I've felt in.... well, I don't know how long. I'm not well, I'm not cured, but for the first time in months, I almost feel like a human. I saw my Neuro on Monday and he put me back on one of my anti-epileptics, hoping it will help even more, and he's given me an abortive to try. It's a triptan, so if it works, it could be life changing. None of the other triptans have worked so far though, so I'm not holding my breath on that one...

Anyway, that's the update. I may be getting close to finding my "drug coctail", or this well time may be a fluke. Either way, I'm going to enjoy it while I can.

I hope you start to find your magical medical miracle soon, too....

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Woah...real glad you're doing better- that "8" is a tough thing to deal with.
I once went in to my dotor's office with the knowledge hat I'd be immeadeately hopitalized (the wound was infected and no amount of painkillers was working at all)- a foolish resident smugly asked the 'ol "rate your pain from one to ten" and I just yelled "AAAHHH!- get that!?!"

I was (briefly) amused- my doctor was not.

On my own scale, I usually vary between "Other people have it worse" and "People better get the fuck out of my way. ...sometimes venturing as far as "Make a deal with God" and once even beyond that.

As to "coctails", I'm happy to say I'm now only on painkillers.
I'm completely off steroids and chemo and Remicade and...well, everything.
Better to let my body recoup without all that crap- it never worked anyway.

How long do your meds last when refrigirated?
It might be worthwhile to get a 90 day supply of everything (assuming insurance covers the costs) and stockpile it up in the freezer: it's what I do with my Percocets )though I rarely have overage lately).
 

---

Posted by Lee (Member # 393) on :
 
My wife has to have heart surgery. Win!

I wish I was joking. . . I have this theory. Doctors only give her "bad news" - for which read, we're going to fuck with you by telling you the worst case scenario, because you know too much about your own condition(s) and keep correcting us when we give inaccurate summaries of your symptoms and treatment regimes, which makes us look bad, God-like arbiters of the species' health that we are - when I'm not there. Now, I'm really not as scary in real life as I am here (although some might disagree, Tom was too afraid to even meet me when he was in the UK). So they can't be afraid of my reaction. So it must be sadism on their part by trying to upset my wife when she's on her own.

Example: first obstetrician we saw in New Zealand got so annoyed with Kate's own knowledge of her condition, she suggested she had a hole in her heart despite none of the tests and scans (X-rays, echoes, ultrasounds, MRIs) indicating anything of the sort.

So in the past year, we've had:

Renal Consultant - Lee = You Can Forget About Having Any More Kids

Another Renal Consultant + Lee = Kids, No Problem

Yet Another Renal Consultant - Lee = Remaining Kidney Deteriorating, You Need To Go On ACE Inhibitors Right Now To Reverse It, And No More Kids For The Duration If Ever

So, yeah. The heart thing. She has pulmonary and aortic stenosis - a faulty heart valve (I think it's a case of having an effectively-bicuspid valve where there should be a tricuspid); in effect, it doesn't close properly and you get leak-back. So we go to her annual heart consult the other day, and get stuck in with some Eastern European wanker who obviously thinks he's Goran Whatsisfuck from ER and is more interested in how long we reckon it'll take to cycle out to where we live since he's thinking of moving to that area.

So she has her scan, I pop out to call our childminder since we're gonna be late, and boom, while I'm gone Goran and the actual Cardiac Consultant who gave her a clean bill of heath after her last checkup (just after having 19 hours of labour followed by an emergency C-Section) spring the open-heart-surgery valve-replacement on her, subject to her Renal Consultant's agreement. And, another child? Not happening anytime soon (= if ever, we're in our thirties and we don't want too much separation of age between our children).

Annd. . . breathe.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Fuck man, get a second (and third!) opinion- your track record with doctors demands it!

Did the doctor really spring the "heart surgery" thing on your wife [i]without[/i you present?

One of my very best friends was told by her OBGYN that she would never [i]ever have children and to start looking into adoption if she wanted them (one of her ovaries ws renoved due to a cancerous growth). -It pretty much crushed her spirit.
Ten years later, she's on kid number two.
I was initally told my leg problem was a spider's bite: I stupidly did not get a second opinion and suffered a year of extremely painful treatments as result.

The point is, doctors are not only often wrong, but are often arrogant assholes that refuse to ask for asistance/second opinion when they make these dire prognosis.

I'm hoping your wife needs nothing, but I'm sure you're allready seeking expert advice.

In this case, I'd happily call you a total loser.
 

---

Posted by Shik (Member # 343) on :
 
You're all weak. Primitive biological organisms. You will be obsolete in the new order.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Forget Borg implants (I went through the whole "Goth" thing allready, thanks).
If i lose my leg, I want the machine-gun prostethic from Darkman[/i}.
...or maybe the "leg-holster" from [i]Robocop.

Or maybe I'll just pray that shit never happens.


...but OTOH, you'll never know the intense cooling relief of applying artifical skin to raw nerves and explosed muscle.
20,000,000 expy points for me, plus I move up a level.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
Here's hoping the best of everything for us all.

But oi, what a thread.
 

---

Posted by Peregrinus (Member # 504) on :
 
Let's see... Sunshine and light... I'm healing faster and more cleanly than anyone expected. After two weeks with the wound-vac, my surgical wound is half as wide and half as deep -- and a little shorter, which they didn't expect at all. I have two more nights of IV nutrition. I'm going to be on a tapering dose of Prednisone for the next six months or so, Imuran for one to five years -- maybe -- and a Specific Carbohydrate Diet to eliminate known IBD triggers... That's a serious bummer, and I'm working to tailor it to my own personal case with the help of a couple doctors and a nutritionist.

I haven't needed any painkillers for the last week or so, although since I do still have a five-inch gash in my belly, Lidocaine is definitely my friend when the dressing gets changed.

Oh, and Nim -- Liz said she was contemplating going to Swedish, which is an hospital here in Seattle, on the other side of the state from where she lives. She didn't mean she was thinking of going to Sweden. Although I bet she wouldn't mind. And neither would I. I've got family to track over there.

--Jonah
 

---

Posted by Nim (Member # 205) on :
 
Is this a new strain of english counter-irony, pretending like one thought the first guy was serious?
Like joking wit my grandma...

Peregrinus purported:

quote:

---

/.../two more nights of IV nutrition/.../

---

*wolf-whistling* You'll be looking like Ali McGraw when you get home!

-"Honey?"
-"Hm? What?"
-"You've been in front of the bathroom mirror for an hour now..."
-"Yeah? Like what you see? C'mere you..."
-" Omigod! An optical inch too! Thank you Peregrinus!"
-"Don't thank me, thank I-vee! And nurse who shaved before op"
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Ug. BLue Cross is saying they lost my appeal for Hyperbaric Oxygen treatment.

lost...it.


Tonight I passed up my best friend's birthday party/tiki convention/surf concert because I was feeling craptackular.

Hmmm....tomorrow's another party (at the Mia Ki no less) so I'll have to make an appearance, but I'm down, pallies.

Ever feel like you need a cigarette even though you dont smoke?
 

---

Posted by Charles Capps (Member # 9) on :
 
They "lost" it. Fucking insurance companies.
 

---

Posted by Shik (Member # 343) on :
 
IN SOVIET RUSSIA, INSURANCE APPEAL LOSES YOU!!

...Oh, wait.
 

---

Posted by LOA (Member # 49) on :
 
Insurance companies are a product of the devil. For the record.

I know. I work for one. You can't live with them, and you can't afford to live without them. It's a Very Bad Deal.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
And now the fun part...seeing if my doctor's office has a copy of the letter they sent off or are we back to square one (over three months ago to be exact).

My internal ouji board tells me....
It's time to find a new doctor.

I'd find a new insurance company as well, but this would be a"pre-existing condition" to them and they'd deny mecoverage so it's Blue Cross or nothing.

Incidentaly, Shik, thatw was pretty funny.
 

---

Posted by LOA (Member # 49) on :
 
Oh, gosh... if your doctor DOESN'T have a copy of that letter in your file, then you DEFINATELY need a new doctor. My doctors keep EVERYTHING in my file, and it's saved my ass mulitple times when I've tried to send documentation to other providers who have "lost" things.....
 

---

Posted by Jay the Obscure (Member # 19) on :
 
Oh, how I hate to bring this thread back to the top.

I spent most a good portion of yesterday afternoon in the emergency room after parts of my left side went numb.

No one apparently knows for sure what happened but the ER doctor speculated after talking with my neurosurgeon that I may have had a mini stroke or mini siezures.

On a positive note, I'm a year out from the first surgery and my Oncologist feels encouraged by this.
 

---

Posted by Peregrinus (Member # 504) on :
 
Now I feel guilty. I just got home from what turned out to be the final appointment with my gastric surgeon. He gave me a clean bill of health and told me he doesn't need to see me any more. I'm still on a lot of drugs, and will be for the next year or five, but with luck this will have been the only surgery I have to undergo for my Crohn's.

No more siezures, Jay. Get it?

--Jonah
 

---

Posted by LOA (Member # 49) on :
 
Jay~ Mini stroke, eh? Like a transient ischemic attack or something? That's awful... are you doing better now? Are they going to treat you for this? ie. if it's stroke, preventative measures such as asperin/Plavix/etc. or if it's seizures an anti-convulsant? I'm just curious what the plan of action for the future with this turn of events is....

Jonah~ That's great news! Yay for no more surgeries! And I hope you can get off of some of your medications soon...

To respond to Jay, who PM'd me, I'm alive. I had a great run of things on my most recent coctail of medications until my body adapted. *shrug* We knew it would happen... it was a matter of time. I'd been hoping to pull more time out of it, but I really was only able to pull about 6-8 good weeks out. It's better than nothing. And it only took a total of 13 prescriptions in my arsenal to do it. I am right now on the highest doses I can be on within the current coctail and mostly functional - head hurts, blood pressure is barely existant, and side effects are incredible, but I'm enjoying the last of my time as a normal person. My next doctor's appointment we embark on a new journey into the world of the MAOI. This is a very rarely prescribed medication for migraines because it's so dangerous. In 14 years of practice, my doctor has only prescribed it to two other patients. I will make three. This medication can very truly kill me. There are numerous foods and medications that it can have deadly interactions with. I must follow a strict diet and watch carefully every item that enters my body. On that note, I now wear a MedicAlert bracelet. I'm so cool - just one step away from the "help, I've fallen and I can't get up!" button. Yay, me! This is an extreme move we're making, and my entire life is being changed as a result of it, as every single medication I currently take is no longer safe for me and must be replaced, as well as most of the foods I eat are now potentially lethal, but desperate times call for desperate measures. Woot.

That's the update in my world....
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Geeez!
Here I TRY to feel bad for myself and here all of you are with your problems (except you Jonah- you healthy jerk! ).
Fantastic news that you're getting healthy- you were sounding in pretty bad shape there for a while.

LOA, how soon will your doc know if the new meds are working? If they dont work, I would think he's take you off them ASAP to prevent possible problems.
The whole "food interaction" thing sounds like it's be a vestseller fad diet- start writing now and you'll make the post-holiday season diet push!
Hope this works for you.

Jay...man. I cant imagine the scariness of being told you've had a "mini-stroke". The only positive thing you can get from this is the ability to ignore casual aquaintences that annoy you- just say you cant remember them and they'll slink away in shame. yeah, that's black humor, but it's all I gots for ya!).
So...you said despite your "mini-whatever" your doc is optimistic? Maybe it was just a weird circlulatroy thing...you're kinda in unknown territory after all- it need not be some recurring horrible thing.

As for myself, I'm not on anything except painkillers (which really dont work anymore) just now and FINALLY am about to go for my first Hyperbarric treatment (probably just a consult this first time) on Thursday.
Maaaan- I'm hoping and praying(!) that this works a miriacle. The treatment looks promising, but does not really address the mystery cause for the wound.
I'll take what I can get.

A word of advice guys- cherish your support..er...people. The loved ones in your corner are the big diffrence- going it mostly alone is pretty craptackular (and why this thread of woe is so good to have).
 

---

Posted by Peregrinus (Member # 504) on :
 
If it's any consolation, my head is still a mess and I am likely to be working on that for probably the next six months to a year...

--Jonah

P.S. Jason, I've been inquiring about what you've got going on and so far these folks are baffled... Still looking.
 

---

Posted by AndrewR (Member # 44) on :
 
LOA - your meds sound like Borg! "They've adapted!!".
 

---

Posted by Jay the Obscure (Member # 19) on :
 
I just got the news that the latest MRI shows more tumor and that they apparently want to do more surgery to remove it.
 

---

Posted by Chris (Member # 71) on :
 
Fuck.
 

---

Posted by LOA (Member # 49) on :
 
Oh, Jay.... I'm so sorry
 

---

Posted by bX (Member # 419) on :
 
That's terrible news, Jay. I'm sorry. In my thoughts and prayers. Also, could this forum please get a whole lot healthier soon. Sounds like we've at least got Jonah on the road to recovery. Could the rest of you geeks please get with the program here...
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Fuck indeed.
 

---

Posted by Shik (Member # 343) on :
 
I AM HEALTHY PERFECTION. BOW BEFORE THE MIGHT OF MY IMMUNE SYSTEM.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Bow before our incredible resiliance and implacable will to survive, you healthy pussy, you.
 

---

Posted by Shik (Member # 343) on :
 
Pfft. By now, I'd've just offed myself & come back to life full & healthy.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Can we test that via Crucifixion?
 

---

Posted by Shik (Member # 343) on :
 
You mean "cruci-fiction," don't you?
 

---

Posted by AndrewR (Member # 44) on :
 
Jay you hang in there mmmK! At least they FOUND it and you are on top of things! Have they developed any sort of nanite yet that go around eating cancerous cells?
 

---

Posted by Jay the Obscure (Member # 19) on :
 
Thank you for your prayers and good thoughts.

We spoke with the neurosurgeon on Friday and he wants to do the surgery on the 14th.
 

---

Posted by Cartman (Member # 256) on :
 
Ask him if he can close you up with a transparent skull-cap this time. B)

Seriously though, good luck.
 

---

Posted by Benjamin Peace (Member # 1939) on :
 
The first thought I had about this is how cancer cells usually move around the body. Your brain is relatively soft tissue, like lungs and marrow. Don't let your doctors forget the rest of your body.

My second thought was the Saw movies.....Jay the Jigsaw.

Seriously, i don't know you beyond our human commonality. Thats enough to cerish you in my book. You are in my prayers Jay.
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
Sorry to hear about this Jay, hope you come out of this healthy.
 

---

Posted by Shik (Member # 343) on :
 
IT'S NOT A TOOMAHH!!
 

---

Posted by Jason Abbadon (Member # 882) on :
 
It's not-
It's Jay's almost-absorbed prenatal twin brother...thus explaining his occasional blackout and all those grisly murders in his county...
 

---

Posted by Ritten (Member # 417) on :
 
Chris summed it up pretty good.

Jay, have someone post your room info or something so we can see what is what on the 15th or 16th.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Any word from Jay yet?

Anyone?


As for myself, I've been scarce lately becuse I've started my Hyperbaric Oxygen Therapy.
An intresting experience- not for the claustraphobic. I have to keep my ears pressure equalized at all times- like a diver- so they dont risk rupture.

But it's going very well thus far.

I found out that the telfa/zinc oxide combo I was useing on my wound was really becoming harmful to it- no where for it to drain with that combonation.
Now I'm useing an iodine solution and gauze wrapping.
Plus, I've got a new doctor- a woumd care expert-with a fresh perspective (and his million or so ideas I've not tried yet) have me very hopeful for the first time in...well, years that I'll beat this.
My new doc is talking about a skin graft useing synthetic skin (grown in a lab instead of cut off my ass). Soon I'll be a "skinjob".

Anyway, tht's me.
I hope everyone else is doing as well.
 

---

Posted by LOA (Member # 49) on :
 
Jason~

I just found out the other day that we have a hyperbaric chamber here in Spokane, and it made me think of you...

I'm glad to hear that you have hope and options finally!!!

I'm in the midst of my "two week cleanse" before I start the MAOI, which is the really dangerous migraine medication. I start it on Sunday.

We had to change most of my regular medications as a result of this, and the new meds are not nearly as effective, which is especially apparent in my sleeping pills. I'm on a benzodiazapine now (same family as Valium) and not only does it not work as well as my last med, but, like all benzos, it has the unpleasant side effect of causing me to have what I can only describe as "mini-panic attacks." My doctor calls it adrenal malfunction, as they're not panic attacks in the true sense - nothing triggers them - I can just be laying down watching TV when one will strike - but they are unpleasant never the less.

Other than that, I'm still hopeful for positive results on the migraine side of things. The panic attacks can be dealt with later, I'm sure... I just want to get rid of these migraines! :-P

I hope everyone else is hanging in there...

~Liz
 

---

Posted by AndrewR (Member # 44) on :
 
LOA! I was just wondering - my mum gets a lot of headaches - I don't think they are as bad as yours although she did use to get a lot of actual migranes. She's trying this new doctor - he is a musculo-skeletal doctor. He gives her Nitrous oxide?? Laughing Gas? To relax her muscles and then I think does a chiropractic type stuff on her head and neck.
 

---

Posted by B.J. (Member # 858) on :
 
I have a cold.....

Seriously, glad you're actually getting somewhere with your treatment, Jason. Can't imagine having to go through that myself.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Merry Christmas!

I went in for my 9th (of 20 pre-approved) treatment on Friday and was told (suprise!) that my asshole insurance has suspended my treatments as "not medicly required" for my condition!
This from the same people that just gave their approval three weeks ago.

Motherfuckers.

From what I was told (and I cant verify because everyone at Bluecross is jacking off for the holiday and wont return untill tuesday), BC wants mt new doctor to....
write a letter explaining why I need the treatment and then it will be reviewed and decided on again.

WE JUST DID THAT!
That approval process of writing letters nad appealing took almost six months. Six months of my leg just rotting away.

I was actually shaking with frustration yesterday...
 

---

Posted by Shik (Member # 343) on :
 
I'll carve you something nice. Oak, maybe? Maybe maple? Or perhaps you'd rather go for that dashing mahogany or ebony look.
 

---

Posted by Peregrinus (Member # 504) on :
 
Fuck that noise. We can rebuild him. Faster. Stronger. Better. We have the technology...

--Jonah
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
Make 'em compatible with the new iPods...
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I want the machine gun prostetic leg from Darkman installed- then I'll be visiting Blue Cross' "medical review board".
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Looking like I'll be getting a pogo stick eventually...man.
So, I've been doing the HBO thing for about two weeks (and off for a week and a half) and went to see my wound care Doc today.

For whatever reason, it's FAR worse.
10 centimeters worse in fact.

Jusus, I'm not typically the weepy type, but I almost lost it in the parking lot after my appointment.
I go back in one week (I'm trying a new topical dressing with a compression bandage from now untill then) and if it's not noticibly better, the Doc's gonna admit me....no idea for how long.
Like I'm made out of money.
There's a infection to the wound he wants to kill (indeed he thinks there may be some underlyng and very tough to kill bacteria causing all this shit).

Annnyway, anyone heard anything on Jay? His lack of updates is concering me greatly.

Liz, how are you faring? Is the new MAOI stuff helping?
 

---

Posted by Peregrinus (Member # 504) on :
 
Now I feel guilty that I'm doing so much better. All that's really left is a year or so of rebuilding and final healing of the surgical wound.

I, too, am worried abot Jay. I'll let Liz update everybody on how she's doing. And Jason...

Shit, man...

I don't know if that's a type of staph infection, or some other nasty that does the same thing. One of the things that makes staph so scary is that it coats itself in a biofilm that prevents the stuff that would kill it from even getting to it. I'm wondering if that's what your doc thinks is going on. But if worse comes to worst, I'll start a collection to get you the most leading-edge leg and foot we can. Which is small comfort, I know.

And if you need someone around, let me know, and I'll do my best to come a-runnin'.

--Jonah
 

---

Posted by AndrewR (Member # 44) on :
 
Sounds gross but I think they are using medical maggots to treat some hard-to-kill bacterial infections now.
 

---

Posted by Da_bang80 (Member # 528) on :
 
Blech. Anyways I spent about 4 hours in the hospital today. I wrenched my spine snowmobiling yesterday and it didn't actually start hurting until today. So no I have to go to a chiropractor once a week for a couple months. It was worth it even though I can't raise my arms above shoulder level and my knees won't fully go straight yet.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
If I can just get this to a point where it's not getting worse, they'll probably try an artificial skin graft (that is to say, skin grown for that purpose, not from my body).
I'm still kinda freaked...all this is happening at the worst possible time too- my direct boss was seriously injured in a mototcycle crash two weeks back and almost lost her right leg.
She'll be out probably two to four months.
My fellow assistant managers are...well,...
Morons.

Hmmm....still, hope springs eternal in the body full of Percocet, so I persist.

Thanks for the encouragment, Jonah.

All us sickly Flarites should get together and get seriously plowed- then spill our tales of woe on somepoor barkeep.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
eone of my docottorsaithatthstd that thhat tsurgeonwas sggressive andtookoutmor emtissue than expected around th tumor site anid m noow I am un able t o move my left arm I as some movement in my left lerg bu no notr normalmal moveme is very gradually regaining some movemn ti m myleft sidel llldaysy in the hospital and Ihsd'll get ot day long program of ysical, occupational, andhome andisssed my d daughter tremendously, and Am now forced rc to become right handed and to type with one neneehaandaseddeddyoyou ucan ttellll e I�ve becebome a very poor tytypist.
 

---

Posted by Da_bang80 (Member # 528) on :
 
Translation:

One of my doctors, that surgeon, was aggressive and took out more tissue than expected around the tumour site. And now I am unable to move my left arm I and some movement in my left leg. Gradually regaining some movement in my left side. I was on the acute rehab floor for several days in the hospital and I get a day long program of physical, occupational and home. I am at home and I missed my daughter tremendously, and am now forced to become right handed and type with one hand. You can tell because I am a very poor typist.

I hope I got that reasonably close. I just wanted to help you out by retyping your post so it's a little more readable. I hope you get better soon man.
 

---

Posted by Nim (Member # 205) on :
 
They took out more tissue than necessary and crippled your left side? Well they must pay for that, pay like hell.
This can't possibly be covered by some clause saying "we might hit something important but if so it's force majeure".

The bang: I think he (k)issed his daughter tremedously when getting home. Or is that non-canon?
 

---

Posted by Jason Abbadon (Member # 882) on :
 
He notified the (D)discovery on subspace when he got home.

Jeeez...

Jay, glad you're stil with us and are back at home- I'm hoping your rehab goes smoothly- you'll once again be a better typist than I am! I know it!

"Mr Aggressive Surgeon" needs a big smack- of all the places where extreme caution is warranted, it's your brain!
The Hypocratic Oath should include "I wont be a pompass fucko."

The thing is to believe that no matter what, you'll fully recover with persistance- physical therapy has a huge mental therapy element to it. Concentrate on your family and get better...that way you can come get plowed with us (as stated in my prior post).

Besides all that- you can watch the utter downfall of Bushco and the Republican Party!
 

---

Posted by LOA (Member # 49) on :
 
Jay,

I'm so sorry to hear about the long road that you have ahead of you, but I'm thrilled to hear that you are still with us *hugs* Please take care of youself.

~Liz
 

---

Posted by B.J. (Member # 858) on :
 
Good grief! If that post had come from anyone else, I would have thought they were kidding or exaggerating. I can't imagine what you or your family is going through, but at least that's one more hurdle you're over!
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
I hope you get better Jay.
 

---

Posted by Peregrinus (Member # 504) on :
 
Do as I do, Jay. Obstinate refusal to accept that you will ever have to be permanently less than you were at your peak is what's helped me rebound so quickly after having 12 inches of intestine removed. Which still freaks me a bit. I always prided myself on being reasonably intact, goddammit...

But I start fencing again thie Spring.

--Jonah
 

---

Posted by bX (Member # 419) on :
 
Great to hear from you, Jay! Sorry to hear the surgeon had to go and remove so much extra tissue. Glad you got to see your daughter though.

See, this is how we know Jay was super-intelligent. They scooped that much brain out of his noggin and I'll wager he's still not Republican...
 

---

Posted by Cartman (Member # 256) on :
 
I always thought Jay had an excess of brain, but this is not how I imagined he'd get rid of it. B)
 

---

Posted by AndrewR (Member # 44) on :
 
Oh Jay!

You are still here though!

Keep on typing. Get your neurons to become nice and plastic and reform connections!

You are fantastic!
 

---

Posted by Charles Capps (Member # 9) on :
 
I'm beginning to have the urge to rename this forum "Flare's Home for Medical Disasters."

Jay, there's nothing I can say that hasn't been said already, and better, by others. If there is anything that we can do for you, don't hesitate to ask.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by Cartman:
I always thought Jay had an excess of brain, but this is not how I imagined he'd get rid of it. B)

---

quote:

---

Originally posted by Jason Abbadon:

Anyhow, I hope you get more of those "pain free" hours! You're a lot tougher than I am to suffer that crap 24/7.

---

quote:

---

Originally posted by LOA:
MAGNUM is a great resource.

---

Mental image of Tom Selleck as a cure for all ills...

Seriously though, blacking out thing sounds a bit nasty. Funny that it seems to happen at the exact same time each night too.

Lets hope it's just a 'thing', and thats all. As for the insomneia, I can sympathyse there. I can't remember the last time I got a propper nights sleep, but it's probably stress and an over active imagination. Oh well, I'll go have some horlicks, see if that works.

Feel better people. Nighty night.
 

---

Posted by Lee (Member # 393) on :
 
The moustache is the source of his power.
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
Well I'm at home today, sick because of some Taco Bell. This week's disease, diarrhea.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Shit in, shit out....the way of Taco Bell.
 

---

Posted by AndrewR (Member # 44) on :
 
You maybe alergic to Chihuahua!
 

---

Posted by LOA (Member # 49) on :
 
Well, it finally happened last night - I got up to use the restroom, and I passed out twice. I'm bruised, battered, and my boyfriend wants me to wear long sleeved shirts so no one thinks he's been beating me

I did everything I could to avoid it... I sat up on the edge of the bed drinking water for 3 minutes before getting out of bed. Then I stood against the wall, holding it, for a good minute before I started moving, to make sure everything was okay. All seemed fine. So I began my trek.

I was about halfway to the bathroom (there are no walls to hold on to once I get around my bed, BTW) and I remember nothing else until I woke up on the floor halfway in the bathroom and halfway out. I had scrapes and bruises and a knot on my head from, I'm guessing, when I went down. Somehow I got through two doors along the way.

When I tried to get up, I made it upright with no problems and then suddenly I lost control of my body. I remember very little of it - just snapshot images here and there - grabbing the counter, screaming - reaching for the doorknob when I couldn't hold on to the counter - pushing away from the bathtub so I wouldn't hit my head on it as I went down, and I remember the feeling of my head bouncing off of the floor when I went down.

That time things didn't "grey out" - I just went down. No control of my body. I don't know how long I was out, but when I woke up, I couldn't get up at all without getting dizzy, so I ended up having to crawl back to my room.

I look like I've been beaten with a club. I can hardly walk, because I think I fractured my tailbone, and I have three seperate knots on my head.

I'm heading to minor emergency when they open for xrays of my ass to see how bad it is.

And I'm calling my Neuro on Monday because I can't be passing out like that - I'm scared to death.

My boyfriend, who normally would have heard it all from the bedroom, was asleep on the couch tonight because he fell asleep there after talking on the phone to his cousin late, so he didn't even know. He feels awful that he wasn't there to help me.

It'll be fine though... I'm tough.

Anyway, that's the update.

I couldn't sleep after midnight, either. So I'm tired. Not that I sleep much, anyway. But try sleeping after being attacked by your own bathroom - no good!

I've gotta get dressed for work now. I'm going to try to put in a few hours before minor emergency opens and then I'll go for xrays. Joy.

~LOA
 

---

Posted by AndrewR (Member # 44) on :
 
Orthostatic hypotension (hypo meaning below - low blood pressure) also known as postural hypotension...

I think that is what I had when I got that bad fever once. Basically I couldn't stand upright - especially when I wanted to go to the toilet at night... I literally had to grasp the floor and crawl on the ground. It was very frightening.

Maybe it's this new medication?
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by LOA:
Well, it finally happened last night - I got up to use the restroom, and I passed out twice. I'm bruised, battered, and my boyfriend wants me to wear long sleeved shirts so no one thinks he's been beating me
~LOA

---

Maybe he'll buy you a leather collar and cuffs, so everyone will think you enjoy being beaten...
 

---

Posted by LOA (Member # 49) on :
 
Okay, update:

So my tailbone wasn't fractured, just severely bruised. The ER doc said it would take 3-4 weeks to stop hurting. I thought he was full of it, but he must be right seeing that I STILL hurt if I try to sit/stand/go up down stairs. I have to sit on a donut, and the only place that's comfortable is on our loveseat, so I can lay on the donut with my legs up over the edge. Even the full size couch is not comfy, and my bed is completely unacceptable. Pleh.

I also have passed out several times since then. During the day. Once while driving. So I don't drive anymore at all. Don't worry, no one/thing was injured. I was on the freeway at 70mph, and somehow ended up in a ditch, right side up, with no damage or injuries. Miracle.

We're in the process of pulling me off of my second med because my doc feels that it must be med related, since there are no other indications of a neurological issue (stroke, anyeurysm, etc).

My vision has gone nuts on me - double and blurred vision - I have had to change the fonts on my computer to be forced set to 30 point to see them at all. I can't read anything smaller, so books and such are out of the picture. My boyfriend has to read my medication lables to me so I know which pill bottle is which at night, since so many of my pills look alike right now.

Also, my insomnia has gone completely nutsos on me. In the last 7 days, I've slept now 10 hours. 3 nights, I didn't sleep at all. No day time naps any day. And the nights I did sleep, one of them was 4 hours, but every other night was VERY minimal. I just can't fall asleep or stay asleep, but not for lack of trying.

I'm also having these bizzare electric shock feelings that go through my body - seriously, it feels JUST like how it felt when I WAS electrically shocked in high school. They just pass through my whole body in a quick single wave, and I convulse, and anything on my lap is bucked off (my laptop once) and anything I'm holding is literally thrown to the floor in the process. Totally weird.

So we're trying to get to the bottom of it. But everything checks out fine. So we're trying to get these meds out of me, one at a time, as fast as possible. Hopefully that will resolve it.

My gut feeling tells me there's something else going on though... I didn't feel that way until the "shocks" started. I see my Neuro again tomorrow, and I'll talk to him, but I'm getting concerned.

I haven't worked in over a week, either, BTW. The computer software at work does not have the option to increase the font size, so I can't work until tech support either figures out how to fix it, or they can get me a magnified monitor. It's killing me. As bad as everything sounds, I FEEL well about 90% of the day. I mean, I can't see right, but I still feel decent enough. Sitting at home, unable to drive, is killing me. I just want to work.

So they're working on it.

~Liz
 

---

Posted by Lee (Member # 393) on :
 
Doom and gloom all round, then. My wife gets a call from her cardiac consultant, in reply to her chase over the still-unscheduled stress-exercise test. Turns out he's seen her last MRI, and on the basis of that is going to bring up her case at the next surgeon's meeting, next week. So it looks like she will need surgery, so our hopes that the test would rule it out are unfounded.
 

---

Posted by Cartman (Member # 256) on :
 
...

LOA, I don't know how you manage to feel anywhere near "well" with that little sleep (if I average less than 6 for a few days I'm as good as dead, which is every other week on my schedule), nevermind all the other crap thrown at you, but I sure would like to know your secret. B)
 

---

Posted by AndrewR (Member # 44) on :
 
Maybe these "shocks" are some sort of epilepsy? Sucks.
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by Lee:
Doom and gloom all round, then. My wife gets a call from her cardiac consultant, in reply to her chase over the still-unscheduled stress-exercise test. Turns out he's seen her last MRI, and on the basis of that is going to bring up her case at the next surgeon's meeting, next week. So it looks like she will need surgery, so our hopes that the test would rule it out are unfounded.

---

Well that's super crappy.
on a plus note, I was just reading that there are more cardiac treatments than any other kind (probably due to the commonness of cardiac disease in this country).
So- hopefully this will be a "common" malady that easily treated- heck, even stuff like angioplasty (once a last-ditch effort) is now a smooth process.


LOA, you need to seriously consider weither the new batch of side effects is worth whatever pain-free moments you might get from the current treatment.
Really does not sound like it- if I coud not read, I'd go nuts (moreso even than already).
 

---

Posted by Charles Capps (Member # 9) on :
 
Jeez Liz, from the way you talk, it's like you're in an abusive relationship with your friggin' meds...
 

---

Posted by LOA (Member # 49) on :
 
Jason~

It's not worth it, and we're pulling me off of everything, one at a time, as quick as possible. WE can't do everything at once, because then we won't know which med was the culprit, and I may take a similar drug again by mistake some day, thus having the same issues. I've already gone off of my sleep aid, since it seemed most likely at first (thus the lack of sleep).

Now I'm going off of the MAOI. Tonight is my last pill, then it will still be 2 weeks before it's completely out of my system.

After that, if things haven't settled down, I don't know which med we'll go after. All of the other ones I've been on VERY long term, and these problems are recent.

Charles~

It's funny that you say that, because after I passed out on Friday night last week and had to go to the ER, my mother showed up (a 14 of her personalities) and she caused a huge scene accusing me of being a "battered woman" and saying that I'm just making all of this up because Scott beat me and I didn't want anyone to know... puh-lease.

First of all, if any guy laid a hand on me, that would be the end of THAT. I'd be gone, and I'd take him down the legal system as far as I could in no time flat.

Second of all, if I WAS a "battered woman," and for some FUCKED up reason I decided to stick around, WHY wouldn't I just say I fell instead of making up a HUGE lie that includes me having all of my medications taken away from me and having to see all of these extra specialists and have extra tests done?

And third, if Scott HAD beat me, he probably wouldn't have let me come to the ER alone while he went snowmobiling... I'm quite sute he would have wanted to be there to make sure I "didn't say anything" about it, or whatever.

My mom is a moron.

THEN, after I had to listen to this crap for 10 solid minutes, and I'm trying to reason with her and convince her that I WASN'T beaten ("Battered women lie about this, so you're going to have to prove it to me... just saying it isn't good enough!" - what????), suddenly her next personality came out, and she asked if Scott wanted to go out to breakfast with her and meet her mom and sister next weekend.

Hello? Psycho? You just accused the man of beating me and said you were going to kill him less than 30 seconds ago. Now you want to take him to breakfast and introduce him to the family???

Then it got even stranger when about 2 minutes after that, out of nowhere, she asked if I thought I'd finally get my engagement ring for V-day this year, because she loves Scott so much, and she's just ready to make him part of the family.

SAY WHAT???

The woman needs help.

So yes, it does seem that I'm being beaten. In this case, I believe it was by the bathroom counter when I passed out. My mom thought it was Scott. But as you pointed out, it's really just my meds
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by LOA:
Jason~

It's not worth it, and we're pulling me off of everything, one at a time, as quick as possible. After that, if things haven't settled down, I don't know which med we'll go after.
All of the other ones I've been on VERY long term, and these problems are recent.

---

quote:

---

THEN, after I had to listen to this crap for 10 solid minutes, and I'm trying to reason with her and convince her that I WASN'T beaten ("Battered women lie about this, so you're going to have to prove it to me... just saying it isn't good enough!" - what????), suddenly her next personality came out, and she asked if Scott wanted to go out to breakfast with her and meet her mom and sister next weekend.

---

Maybe she just wants someone to beat up her mom and sister?

I've given up trying to explain anything medical to my mom- she operates solely on a "who/what is to blame" basis.
Now I just say I'm not doing too bad", which is the same bullshit answer my grandmother gives everyone when asked how she's feeling.
 

---

Posted by LOA (Member # 49) on :
 
I normally wouldn't have even told her about what was going on, but I needed a ride to the ER - I was hoping I could count on her for that.

She had breakfast plans though.

So I drove myself, and got a lecture from the ER about how I shouldn't have driven myself, blah, blah, blah. Whatever.

Anyway, my mom is crazy. I pretty much try to keep her on a "need to know" basis as much as possible. It's just not worth the effort of giving her any more than that.


I'm happy to report, BTW, that aside from the double vision, a lot of the other crazy side effects I've been dealing with are finally going away. My doctor told me the shocks and dilation of the eyes and such was all because of the rate at which we pulled me off of the MAOI - we went as fast as possible, and my body reacted with some withdrawl symptoms. I feel much better knowing that. The double vision may well be the same thing, but we will not know for another little while - the medication won't be completely out of my system for another 2 weeks, even though I've stopped using it now.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Just rememer, when driving with double-vision, aim for the space between the two oncoming cars.

It's good to hear your symptoms may be going away.
As for myself, I freaked out last night when I changed my dressings- it looked like the eedge of the would on one side was...er...liquefing (breaking down from beneath the skin's surface), so I called out of work and went to the wound-care center tha's treating me.
Thankfully, it seems the weird look of the wound's edge is the result of the two knee-high compression bandages I wear now and not some horrific backsliding.

Next week (monday) I'm having something called Apligraf ...er...grafted is too severe a term, (applied a bit too weak) to the wound (the procedure takes a couple of hours to perform but requires no hospital stay).
It's artificial skin grown in a lab and designed to adapt to a wound's surface regardless of blood type.

I'm crossing my fingers that it works like the Doc says- could be the magic cure I'd given up on.
 

---

Posted by LOA (Member # 49) on :
 
Well, I hope it IS a good treatment for you! Lord knows you deserve it at this point.....
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Thanks: I'm hoping.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
after 2/12 weeks out of thehospital yesterday's mri shows that the tumor is already back

[ February 28, 2007, 07:09 PM: Message edited by: Jay the Obscure ]
 

---

Posted by Omega (Member # 91) on :
 

quote:

---

I'm also having these bizzare electric shock feelings that go through my body - seriously, it feels JUST like how it felt when I WAS electrically shocked in high school. They just pass through my whole body in a quick single wave, and I convulse, and anything on my lap is bucked off (my laptop once) and anything I'm holding is literally thrown to the floor in the process. Totally weird.

---

quote:

---

Originally posted by Jay the Obscure:
after 2/12 weeks out of thehospital yesterday's mri shows that the tumor is already back

---

I ... what? Fucking hell, man.
 

---

Posted by AndrewR (Member # 44) on :
 
Jay... what the others have said above me! Keep us up to date on what you are going to do.
 

---

Posted by Shik (Member # 343) on :
 
Let me just, uh...dig out that spare positronic brain...
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Geeez Jay...that's fucking awful.
How can it (or any tissue) be back so quickly?

Hmmmm....on a morbidly positive note, surgical re-entry should go smoother this time as you've not had chance to properly heal.
I'm reminded of the scientist guy in Nightmare Before Christmas- the one with the fliptop head.

Hang in there man- we aint naming any starships after you just yet!
 

---

Posted by The Ginger Beacon (Member # 1585) on :
 
That's just not cricket.

You know how we all feel, so don't stop fighting.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
So...everyone still kibking?
I've been doing the 'ol "familial responsibility" thing while on vacation, but I'm finally back.

Hopefully things are well with our little circle of sick friends.
 

---

Posted by Da_bang80 (Member # 528) on :
 
I ran out of drugs today... It feels like someones trying to forcefully replace the wisdom teeth they took out

Other than that, yeah, I'm good.
 

---

Posted by LOA (Member # 49) on :
 
Alive.

Haven't been allowed to work since before President's day, so that's killing me.

I'm allowed to drive again though, so that helps. It's a little less like being under house arrest, though not much since I very rarely venture out in daylight hours.

I've lost more than 20lbs now. No one knows why, specifically, but my PCP and my Neuro are both not too concerned about it, so I'm not going to worry about it anymore, either. Shit, I'm a 25 year old girl in the US.... skinnier is better, right?

The double vision has mostly gone away and seems to be a side effect of not sleeping coupled with computer use. If I spread my computer use out and get at least 4 hours of sleep a night, it is managable. If I get less than 4 hours, it's still managable, as long as I limit my computer use by a LOT.

The passing out is over... I've only had a few recent spell brought on by the Zanaflex when I take it. For some reason, since I've taken the MAOI, the Zanaflex reacts poorly in my body and lowers my blood pressure to the point that it causes passing out. This is bad, as I've taken Zanaflex for years with no problems.

The MAOI has been "out of my system" for a month now, but somehow I believe it's still screwing with my body and the neuro transmitters in my brain....

Since I took it, there's not a single medication from "pre-MAOI" days that I can take without reprecussions... DHE gives me severe body cramps, Percs make me sick, antiemetics are ineffective, Zanaflex lowers my blood pressure dangerously.... I've suddenly become intolerant to my entire "aresenal" of medicaion, and we've tried other meds, as well, and only gotten horrid side effects as a result.

Therefore, this is the migraine cycle that can't be broken.

Right now I'm not taking any meds, except one "preventative." We kept me on this one because it keeps my sound sensitivity in check. It's the only med the MAOI didn't mess with, but I believe that to be because I took it WITH the MAOI.

It's pretty strange the way everything else just keeps messing me up worse. I've finally told my doc that I can't handle the cure 'cause it's worse than the ailment right now with the way my body keeps rejecting stuff..... it's just strange.

I see the new specialist in Seattle in two weeks. hopefully she'll have some ideas, but it's hard to say. I believe this MAOI thing might have been a Very Bad Idea, but we had no way of knowing that going into it.

I also see a new sleep specialist in 3 weeks. I have little faith in that specialty, but we DO know that sleep issues are my top migraine trigger. Unfortunately, I'd gotten back to 4 hours of sleep a night, then we screwed it up by giving me my sleeping aid back in order to try to bump it to 8. My body reacted to the sleeping aid, even though it's a pill I've taken off and on for years, and since then I've been lucky to pull 1.5-2 hours of sleep a night, and what sleep I DO get is not solid. Desperate times call for desperate measures, I guess, but sleep specialists are unique in that they have a specialty where they can 100% tell the patient that it is his/her fault when the "cure" doesn't work. "You don't have good enough sleep hygiene! That's why you don't sleep well! You must follow these 5000 rules too the 'T' and if you do, you will sleep. If you don't, you will not sleep, and it's your fault!" Then, they make it so complicated to sleep that no one CAN follow all of the rules, and when it doesn't work, it's because the patient was "uncooperative."

Can you tell that I'm pretty jaded about sleep specialists? My Neuro swears this one is different than the others I've seen, but I doubt it.

Anyway, that's my update. Things are fine, I'm just in limbo, waiting for them to get better.

Hope everyone else is doing well....

~Liz
 

---

Posted by Peregrinus (Member # 504) on :
 
Presently 193 lbs., and fairly stable. I expect that to drop a bit as I finish weaning off the prednisone. 4.5mg/day now, and still dropping weekly. I should have pictures to post soon.

Also driving again. I hadn't realized just how much of my depression was connected to that. Oy.

Hey, Liz -- when you're out here, you want to meet up for coffee or lunch or whatever form of sustenance you can still partake of?

--Jonah
 

---

Posted by Da_bang80 (Member # 528) on :
 

quote:

---

Originally posted by Peregrinus:
Also driving again. I hadn't realized just how much of my depression was connected to that. Oy.

---

Man, I know what you mean. Winter is always hell for me because I have to put my bike away for 8 months. At least all the snows melted off the roads by now, I just have to wait for the city to sweep off all the dirt and sand now.
 

---

Posted by LOA (Member # 49) on :
 
Charles hit me up for food, as well... I'm not sure if I'll be able to, yet.

I'm only in town for a few hours, literally, and I have a friend who is picking me up from the airport, taking me to my appointment (which is supposed to take 2-4 hours??) and then "has plans for us" for the rest of the day for I haven't been able to find out from her what those plans ARE....

As I was telling Charles, she's a bit wild and crazy, so I need to see what is happening... I'd like to find time to meet up with you peeps though. BUT, since she's pretty much saving my hide by driving my ass around all day (she got a babysitter and TOLD me "you're not getting a rental car, when does your plane come in, I'll get a babysitter, and we're GOING to get your brain figured out together!") I don't really think it would be appropriate to just abandon whatever wacky plans she's made for me already

Though, if my appointment really takes 4 hours, there won't be much time for wacky plans, anyway.... not with airport check-in times and all.....

As I said, I'm REALLY only in Seattle for a few hours total... I think I come in at like 11:00am and I leave at like 7:00pm or something. Appointment is at 1:00pm, I believe. Plus drive time from SeaTac to Swedish and back... oy!
 

---

Posted by Peregrinus (Member # 504) on :
 
I could meet you at Swedish to wish you luck, maybe have lunch right before or right after (if your appetite is up to it), say hi to your friend, and then let her abduct you once more.

Basically, I want to give you the hug and mojo I've been saving up for you for so long. *heh*

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

I'm only in town for a few hours, literally, and I have a friend who is picking me up from the airport, taking me to my appointment (which is supposed to take 2-4 hours??) and then "has plans for us" for the rest of the day for I haven't been able to find out from her what those plans ARE....

---

quote:

---

the

zonducted a study on patients with damage to the left and right temporal lobes.

LEFT temporal lobe is important for verbal memory in adults.

RIGHT temporal lobe is important for non-verbal learning and memory, visuo-spatial information.

---

 

---

Posted by Peregrinus (Member # 504) on :
 
So when do you change your screen-name to "Bareil the Obscure"? Fight fiercely, Jay. Fight fiercely...

Also, what is the current state of research into blocking the neuron-replicating inhibitors? Jay needs some to grow back the good bits.

--Jonah
 

---

Posted by Jay the Obscure (Member # 19) on :
 
we are nowlooking into clinical trials for new brain tumor meds

[ March 30, 2007, 11:17 AM: Message edited by: Jay the Obscure ]
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Er...you'd think they could have gotten it all by now!
Amazing that you're (it seems) all right enough to post in after so much surgery and, well, brain removal.

I'm guessing that (as with stroke victims) you're brain will sorta rewire itself so you can lead a full life?

I'm still unclear what is added into the area where your lobe was- they cant just have a hollow for your brain to squish around in.

I'm thinking they should make it a Pez/painkiller dispenser: you just tilt your head back and viola!
Instant pill drops from your brian into your mouth.
 

---

Posted by TSN (Member # 31) on :
 

"I'm still unclear what is added into the area where your lobe was- they cant just have a hollow for your brain to squish around in."

Most likely, the space is just filled with the same fluid that normally surrounds the brain.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Available down isle 3, just between the canned peas and the soups...
 

---

Posted by AndrewR (Member # 44) on :
 
So, Jay - they didn't GET it all or the extra meds are a precaution!?!

I second the motion for you to FIGHT FIERCELY!

Viso-spatial memory?? Bah! Just get a GPS! Just don't get the one that has Ozzy or Sharon Osbourne's voice!

As for neuro-inhibitors - I gather you mean for new out-growth... I think it's a matter of having the correct signalling chemicals in the various areas to allow the neurons to grow and migrate... it'd be cool if you could some out make that brain area revert to a developmental state and grow like it did in the womb.
 

---

Posted by Peregrinus (Member # 504) on :
 
Exactly, Andrew.It's been studied for well over a decade, and the scientific community is being really cnservative/timid about trying it on humans.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
If they're being that conservative, it's a good bet there's a landfill of brainless monkeys somewhere.
insert "brainless monkey" political joke here.
 

---

Posted by AndrewR (Member # 44) on :
 
LOA! Look here: http://sixtyminutes.ninemsn.com.au/sixtyminutes/stories/2007_04_08/story_1885.asp

It was on Sixty Minutes Australia last night - they don't have a video of the segment up yet - but they do have a transcript!! Maybe this can help you. It seems as if the woman - all her medications have stopped working too.

Tell me what you think.

Andrew
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Sweet! I've got a fairly clean X-Acto on the floor here somewhere...an extra bunch of wires and a cell phone battery...hmmm....

Could be worth investigating further, LOA- maybe even comtacting the show's producers (or the woman herself if she can be reached).

Reminds me of a disturbing episode of Ghost In The shell: stand alone Complex.
 

---

Posted by LOA (Member # 49) on :
 
Ironic that you bring this up - I'm sitting in SeaTac airport right now, waiting to beging my long day at Swedish Medical Center where they do this very type of implant.

It's called an Occipital Nerve Stimulator. One of the doctors on staff at Swedish specializes in stimulators. Mayo Clinic and several other large hospitals in the country are doing trials with the stimulators to treat chronic migraine patients.

It's not a cure-all solution - but it's one that we'll be looking at. I may or may not qualify for this type of operation. It's hard to say. And it's costly. $30K. Approximately every 5 years, the battery pack needs to be replaced, and the leads that are attached to the nerves can come loose or break, which results in other surgeries, so there is a lot of maintenance that goes with it.

Several people in my migraine support group have stimulators though, and until they were implanted, they were 100% unresponsive to medications. Since the stimulators, the headaches have been brought to a manageable level, and preventatives and medications work for the first time ever. That, to me, makes it work investigating.

Again though, I won't know if I qualify until I go through a couple of steps - usually they start with occipital nerve blocks - that's an injection in the nerves that will temporarily "deaden" them. If that helps, then they move to a trial stimulator - that creeps me out. It's a stimulator where the leads are put inside, but all of the wires and the battery pack are outside. Just to see if it will work before they go all the way. Freaky. Then they put in the full system, if everything goes as planned.

That's a normal process, at least.

So I'll wait and see what the specialist says today - see if my symptoms qualify and whether it's time to go down that road, or if she wants to explore other avenues first.

Since the occipital nerve stimulator is not yet approved as a standard migraine treatment, it can be a bit difficult to get insurance coverage for it, so even if I DO qualify, I may have that problem - I don't really have $30K laying around right now.

So we'll see what happens....

Interesting article though... the more I hear about this application of the stimulator (it's been in use for years for back pain), the more I believe it's a valid medical treatment for migranuers.
 

---

Posted by AndrewR (Member # 44) on :
 
Actually - mum wanted me to look it up on the net - that 60 minutes article... she gets bad headaches - they don't seem to be as bad as yours or the girl in the article. Mum has had nerve blocks for some other areas of pain in her body.

I thought of you straight away when reading this interview (I don't know why they just can't put the video straight onto the web?).

I'm glad that it's not just available in Australia.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Soo...depressed today.

I went to the doc only to find my wound worse and the Apligraf treatment doing dick...the skinless area is reaching arpund to the back of my leg now.
Hoo-boy, I dont know which is worse- the general horror of it or my apathy to it at this point.

Talk of admitting me into hospital for a week for (my favorite!) I.V. antibiotics...possibly as soon as Wedensday or Thursday.

Fuck, I'm just re-livng all the shit I tried with my old doctor.

Plus, I gotta go to court today- busted driving with a suspended liscence, no registration and no insurance....it's all been taken care of and I'm hoping the judge dismisses the charges.
Else I get jailtime (unlikely but possible), lose my job, apartment and possibly my flippin' leg.

Pretty concerned, but keeping it together- like McCay commenting on how pretty the Wraith aerial bombardment looked from within the failing shield.
 

---

Posted by LOA (Member # 49) on :
 
Jason~

I'm so sorry things are going shitty for you....

Things didn't go so well for me yesterday, either.

The Neuro told me that "there is no long term treatment" for my condition, my current neuro has "left no stone unturned" and I have the "most thorough file" she's ever had referred to her.

She said the only REAL hopes I have are to try to get into some trials later on for a stimulator, PFO, etc, but the nearest trials are more than a year away.

She's keeping me high on the list though since those are my only hopes.

She also said that at this point she recommends a hospitalization for a med that is extremely dangerous in women of child bearing age to try to break the cycle - she thinks it's my only hope, and it's NOT guaranteed. Most Neuros won't let someone like me take this med, including her, but she doesn't feel there's any other option.

This med can make hair fall out, cause severe birth defects in babies, and cause complications that will result in death for women who accidently get preggers after taking in. All fun.

I also had an occipital nerve block injected to see if that will help at all. I won't know for several days, but since they don't believe my migraines are caused by occipital neuralgia, there's a good chance it won't help. Until it "kicks in" in a few days, I have to ice the injection point a lot - it hurts like a mother - they injected INTO the occipital nerve near the base of my skull. F*ck. I can't describe THAT to you. So I've been icing the area a lot, because even flicking my hair back hurts it.

As for work, she recommends that I stop trying to fix my body so I can work, and instead fix my job to adapt to my body. Accommodations, if possible, or carreer change were her suggestions. She just kept reiterating, "there is NO long term solution - you need to enjoy the little reprives when you get them, and learn to adapt to the bad times when you don't."

So I have two choices - take her word as final since she IS a world renowned expert on migraines, and then wait and see if there's any type of trial that comes up in the future that I will qualify to get into.

Otherwise, I can try to see another doctor in IL - that's the next closest stop. Chicago. And risk hearing the exact same diagnosis and prognosis.

It's a bit disappointing, that's for sure. But life will go on.

On the plus side, she is coming to town to meet with my Neuro on Thurs to discuss some cases, so there's a CHANCE that between the two of them, they can brainstorm something together. But it's slim.

I'm going to go ice my head again now.... *hugs*

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Ug. I LOVE it when a doctor suggests you just stop working to improve your chances of healing: there's literally no way I can go into the hospital right now- my rent is two weeks late as it is, and even if my shitty work would allow me to use the 100 hours of vacation I still have racked up to cover a week in the hospital, the resulting check would not cover my bills.

So, this week, I'm working 70 hours and hoping for the same next week- I have considered this at length, and see no option.
I cant go into the hospital only to be homeless when I get discharged.

So, I went to court today to resolve my driving faux pas, and got a suprise: the judge is on vacation and supposedly notices were sent out informing people, but the jerkoff ahead of me ws yelling his head off about it, so I decided not to harass the poor court teller and just accept it.
Now I have to go back next week and have another week in suspense to find out what's what.

No way am I paying Geico shit untill I go to court- if my case is dismissed, I'll have zero points on my liscense and will only pay $95 each month instead of the $200 they're hosing me for minimum coverage.

The whole "possible birth defects" thing is scary as hell- I was on Thamilidyde for a month or so two years ago- that's the scariest shit ever for defects and I have no idea how long the risk lasts.
Not that I've any prospects in the ol' reproduction department just now anyway- tough to explain the limp and the whole "wound that will not heal" thing to women- pity is not sexy.

Have you considered having some of your eggs frozen for later insemination? If the procedure is risky to your child bearing, it might beworth considering.

quote:

---

So I have two choices - take her word as final since she IS a world renowned expert on migraines, and then wait and see if there's any type of trial that comes up in the future that I will qualify to get into

---

Yeah, that's rough- my current doc sent a biopsy to forensic specialists all over the country (four people in other ststes I think total) and guess what? It's NOT Pioderma Gangranosum. So much for the diagnosis of my prior world-reknown-textbook-writing-Dermatlogy Professor.

Back to "unknown cause/ unknown pathology".

I'm looking into snake-handlers, faith-healing and Santeria next.

Hang in there, Liz- we's pulling for ya!

Hmmm...once the injection site heals up, if there's a mark, you could tape some white wire from it into an iPod, go on the train and pretend to be rocking out to music.
Freak some commuters out.
 

---

Posted by AndrewR (Member # 44) on :
 
What about medical maggotts, Jason? Sounds utterly gross - but they cultivate maggots to eat away dead and necrotic tissue to allow wound healing.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
That's for debriedment, which does not seem to the an issue with me- each time my dressing is changed it "mechanically debrieds" the wound.
This mean that the gauze pulls away most of the fibrin coating of nasty stuff that can grow on a wound bed.

Hurts too, of course.
 

---

Posted by AndrewR (Member # 44) on :
 
You have NO idea how it started? You may have mentioned it earlier on. This is a large thread now.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Hmmm...not really no.

(wavy flashback effect)

Several (eight? nine?) years back, I had a wound on my leg (tiny) that opened into a wound.
I went to see a doctor who said (with no testing!) that I was hypoglycemic and that was the cause.
the wound healed over, leaving a livid scar, I stopped eating sugar, freaked out over it and got tested by another doctor.
My sugars were fine- I had nothing.

Four years ago I developed a small pustule near the site of the scar, it was like a pimple and red around it.
I went to another doctor who said it could be a bite or sting (thogh you'd assume I'd have felt that). He scripted Keflex- an antibiotic).
The next day it opened up to the size of a dime, I went back to the doc, he sent me to the nearest Wound care center, where the center's director pronounced it a Brown recluse bite, admitted me, and performed excise surgery on my leg (basicly removeing the entire area).

And that's how it started...

But it was never a spider.

And now it seems it was never Pioderma.

...and now i'm off to see my doctor!
 

---

Posted by Omega (Member # 91) on :
 
If only Greg House existed in real life...

The fact that your body is unable to heal that wound sounds like the key to the whole thing. Adding new skin probably wouldn't help until you knew why you couldn't heal to begin with. I take it nobody in your family has ever experienced anything like this? And that you've had other wounds since this started that have repaired themselves? That would probably eliminate genetic, nutritional, environmental, and autoimmune conditions. I'm guessing the nature of your condition makes repeated biopsy impractical? Otherwise you'd think they'd have tracked down whether it was cancer, bacteria, fungus, parasite, or something else actively consuming your skin. Is there any hope of tracking the cause down by looking at what treatments have made it worse in the past? Maybe something whatever nasty little bugger eats?

Or maybe you were bitten by a mosquito from Shadar Logoth...
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Probably that mosquito thing.
I've had nicks, bruises and cuts to my other leg during the time this has been going on, and while they've been worrisome, they've all healed up fine.

It's just that one area, on that one leg, but it's been steadily getting larger with no reduction in size (though in truth, it's as shallow as it's ever been- it was once 20 milimeters deep).

So I went o the Doc today, expecting him to sentence me to hospital and instead got some good news- the dressing combo they tried on monday (antibiotic gel coupled with silver Acticoat dressing and a compression bandage) has helped a hot and there's "budding" granulation (the base that the dermis and epidermis need to frow from) going on.

Good news there- and no hospital stay either: i'm not doing cartwheels or anything though: most treatments work for me initially but get rejected over time.

It's a big concern of mine that there may be antibiotic-resistant bacteria somewhere deep in the wound that new growth tissue has overlapped- this would constantly underine any new tissue over time and, even if the wound heals over, would eventually open up again.

A nurse asked me today how good it'll be to be all healed up and I was a bit taken off guard.
I have no clear idea how that is, really- try to imagine exactly how you felt physically four years ago (shrugs).

That "house" joke is something I'd heard a few times too- I've never seen the show, but I gather he solves whatevr the medical mystery is each week.
 

---

Posted by TSN (Member # 31) on :
 
Indeed. And always right around ten minutes before the hour. Funny how that works.

You're certain this "budding" isn't some sort of asexual reproduction? The last thing we need is for you to start cloning...
 

---

Posted by AndrewR (Member # 44) on :
 

quote:

---

Originally posted by Jason Abbadon:
I went to another doctor who said it could be a bite or sting (thogh you'd assume I'd have felt that). He scripted Keflex- an antibiotic).
The next day it opened up to the size of a dime,

---

quote:

---

Originally posted by Peregrinus:
Presently 193 lbs., and fairly stable. I expect that to drop a bit as I finish weaning off the prednisone. 4.5mg/day now, and still dropping weekly. I should have pictures to post soon.

---

Jonah, how you handling the reduction in Prednisone?
I was at 4.5mg daily and it was hell getting off- I'd be moving like an old man for the first few hours of the day each time the doseage was lowered.
It's been about a month for you, so I figure you're almost off them by now...
 

---

Posted by LOA (Member # 49) on :
 
Prednisone makes me mean. And fat.

One time I was on it for a migraine spell, and my roommates kicked me out - they sent me to AK until I was off of it. Quite simply, they told me, I either needed to leave, or they would kill me.

And it was justified. I. Was. A. Bitch.

So I called my doctor as my roommates drove me to the airport and told him that, once again, the Prednisone needed to go. It wasn't helping my headaches anyway. We tapered me off quickly, and I was able to keep my friends. It was a story with a happy ending. Yay.
 

---

Posted by Jay the Obscure (Member # 19) on :
 
mywife usesagnesium from time to time to help her eal with her migraines
 

---

Posted by Jay the Obscure (Member # 19) on :
 
agnesium
 

---

Posted by LOA (Member # 49) on :
 
Jay~

I just got some new information today about a magnesium IV Infusion that I want to try.

It's been a bad day. It'll probably end with a night at the ER. I'll ask for magnesium there.

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Taking the whole "Flare" thing a tad literal, dont you think?

Sorry to hear you're having a bad time of it- I went to the Doc's again today and they say it's "looking better" but no real progress is evident, aside from it not hurting much.
Itches like fuck under all the dressings though!

Jay, how you holdng up? The Alberto Gonzales barbeque must have lightened your spirits today: I found it hilarious- 76 instances of "I dont recall" in one congressional hearing- probably a new world's record.
And an official Republican call for him to step down!
I was on the 'ol Prednisoe for almost two years- I was a fun manager to have at work, in retrospect.
 

---

Posted by Peregrinus (Member # 504) on :
 
Well, My weight's not too different, but I'm down to 3mg, stepping to 2.5 on Sunday. Nothing noticable, except that I've lost another inch off my waist.

I hope the itching means it's actually starting to heal -- that's what I know that sensation to be, anyway.

Liz... I want you to stop hurting.

And Jay, pester for something to block the neural cell growth inhibitor, so you can regrow the good stuff they had to cut out.. I'm glad you're still fighting, though.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
The itching means it's itching- more the non-affected area around the wound actually.
Imagine a really thick, knee-high sock that you can never remove except at the doctor's office.

Man, I'd kill for a real shower- it's been more than a week now, and the whole "clean up with a rag" routine is not in any way refreshing.

Glad you're not suffering the strange "old man" withdrawl I went through with Prednisone- that was a drag.
 

---

Posted by B.J. (Member # 858) on :
 
Get a trash bag and some duct tape. Maybe put a hand towel under the tape to catch any water that tries to seep through. Worked for me when I broke my arm a long time ago.
 

---

Posted by LOA (Member # 49) on :
 
Last night, Scott took me to the ER when he got home from work, and I actually got some wonderful care. It was impressive... the doctor was a bit cocky, but he immediately took action, so I'll let that go :-)

He gave me an IV infusion of compazine, decadron, toradol, benedryl, and a bag of fluids, and it made an amazing difference in my head pain. By the time I left the ER an hour later, I'd gone from a 10 to a 2. Praise the Lord!

Today, I'm feeling even better, so I'm guessing the steroid is kicking in.

Furthermore, he sent me home with a 5 day course of compazine, prednisone, and benedryl so I can keep up on the maintenance and better ensure that the pain doesn't come back right away. I feel so much better! I'm glad I took the risk of going to the ER - it was the right decision to make :-)

That's my newest update!
 

---

Posted by Peregrinus (Member # 504) on :
 
Is this something that's been tried before? Or is ths new?

--Jonah
 

---

Posted by LOA (Member # 49) on :
 
New, all of it.

I've used "cousins" of some of the meds, but not this specific coctail, and I've never paired the meds up in an IV infusion.

I think that's what made the difference.

I did have to go off of the compazine already though... I kept losing control of all of my facial muscles, and the doc at the ER said it was the compazine. So much for a 100% miracle... but it was still nice to have a day with no head pain.

Today I'm at a 3, but that's still not bad. As long as I can stay at a 5 or less, I can function. Whew!

~Liz
 

---

Posted by Peregrinus (Member # 504) on :
 
Here's hoping something long-term can come of this. I'd like to see you able to drive, work, and go to school without having to manage stupid amounts of pain. *hug*

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Liz, that's great news about something working for you (even if it's temporary).
Now you know the combo to ask for if it gets really bad again and you find yourself at the E.R.-
Maybe ask that doctor to write-up the exact doseages just in case you need to explain it to some other doctor in an emergency.

What happened with your facial muscles exactly? You could not move them or they twitched or something?

quote:

---

Originally posted by B.J.:
Get a trash bag and some duct tape. Maybe put a hand towel under the tape to catch any water that tries to seep through. Worked for me when I broke my arm a long time ago.

---

Yeah, I was doing that when I had the materials to change the dressing at my home- since I dont, and getting the dressing wet would seriously comprimise the wound (it'd be days before I could get to the doctor's again) I'll have to make do.

I am planning on wrapping it in plastic-wrap and rubberbands just before my doctor's visit though.
I'm going to ask the nurse that really likes me for some of the Aplicoat next time I see her- she sometimes makes me a little "care package" -with my doctor's approval- usually several hundred bucks worth of dressing suppies
!
Over the counter, the Aplicoat and Aquacel AG alone would run about $800 a month if I bought them myself- kinda understandable as they're nade from silver, but waaay beyond mt paycheck's neager capabilities.
 

---

Posted by AndrewR (Member # 44) on :
 
Liz, this might be silly - but I was just wondering... do you thing the fluid top-up helped as well?
 

---

Posted by LOA (Member # 49) on :
 
I don't think the fluid helped so much... I didn't seem to be dehydrated, and I had to get up and go to the bathroom more that night than ever before!!!

As for the question about the facial muscles, it was actually rather amusing, until it got scary.

I had two cycles through this saga - it started when my jaw clenched suddenly, and I began to have a hard time breathing. I couldn't open my mouth though, because I had no control. Then, my lips started to pucker out, and I looked absolutely ridiculous, but there was nothing I could do about it. Talking was impossible, and I just had to wait it out. Then, the jaw loosened, and I could talk for a few minutes, but with a horrid lisp, and my voice was really high. It was bizzare. It was like my tongue was too big for my mouth or something. Then my jaw got stuck in the "open" position, my lips curled over my teeth, and my tongue came out of my mouth, and I couldn't breathe again.

The first cycle of this "fun" laster 3 hours total, but I was home alone, and I didn't know what was going on, so I didn't call for help.

The second cycle hit RIGHT after Scott got home. We laughed about it at first, because I looked (and sounded) so ridiculous, but then it got REALLY bad cause I couldn't breathe. I think I started to panic at that point, which made it worse.

Scott called the pharmacy first, and they said it was either the compazine or my topamax. They told Scott to call the ER and talk to the doc that saw me, or get me in there immediately, if my BP kept rising (I really think that was from me panicking though.)

When Scott called the ER, the doc said it was the compazine for sure, told me to discontinue it and take some Benedryl ASAP. Not and easy feat when one's jaw is stuck in the open position and swallowing is almost impossible. But we got through.

That cycle, while it was scarier than the first, by far, only lasted 1.5 hours total.

I haven't had a problem since, except my jaw is just a bit sore today... it was open WIDE - like, imagine being at the widest point of your yawn, and then getting stuck. That's where I was at.

*shrug* So now I know - Compazine + Liz = Halloween looking faces

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
There's sooo many sex jokes I'm refraining from just now....
 

---

Posted by LOA (Member # 49) on :
 
Scott actually went there and MADE those jokes while we were dealing with this "situation".... I think he was trying to calm me down. Instead, I thought about punching him
 

---

Posted by Lee (Member # 393) on :
 
I've just been given something called rizatriptan (oral lyophilisates) for my headaches. Haven't tried it yet, supposed to take one when I feel it coming on.
 

---

Posted by LOA (Member # 49) on :
 
Ah, yes... Rizatriptan... here in the states, it's called Maxalt.

Didn't work for me. None of the Triptans have, except Frova - and that's been hit and miss.

However, most people with migraines (80% or so) ARE able to get phenomenal relief from a triptan taken at the onset of the pain...

Good luck with that!
 

---

Posted by Jason Abbadon (Member # 882) on :
 
So...things are not getting better and my "normal" pain level has increased upward from 2 to a 4 (of a possible 10).
So my doctor decreed two things if I am to continue being his paitent:

Firstly- no more marathon overnight shifts where I'm on my feet for 13-16 hours without a break.

And I have to go into the Hospital for seven days for I.V. antibiotics with my leg in a sling or seriously elevated.

Buh.

So, I'm hospital bound next Monday for a week: I'll catch up on my reading and the hospital rooms are private (no roomate nonsense) and they have cable with HBO, so it's not going to be awful...
But I'll be cooped up with a needle in my arm for a whole week.

Ug.
 

---

Posted by AndrewR (Member # 44) on :
 
Hey Liz another headache thing - a person in another forum I visit has had bad, bad headaches all her life - she was recently diagnosed with hydrocephaly - a build up of her cerebro-spinal fluid which was building up around her brain creating pressure. I think that is what she was talking about - have you ever been checked for this?
 

---

Posted by Shik (Member # 343) on :
 
Jason, ask them if you can bulid while you're in there.
 

---

Posted by Lee (Member # 393) on :
 
This Rizatriptan seems to do the trick. Only taken it twice, and felt rather odd for the first hour or so, but after that, no headache. I was a bit concerned about going to the pub with my boss this lunchtime, but I stuck to cider and seem to have avoided passing out.

So, the heart operation's on. We have a choice between pig's valve (lasts ten years, then needs replacement) and metal valve (lasts a lifetime or about 40 years depending who you ask, you have to take warfarin, yes, rat poison, to thin your blood, so no safe pregnancies). Well, it's her choice, my suggestion is we, well, she take the ten-year one and see what miracles medical science has performed by then.
 

---

Posted by The Ginger Beacon (Member # 1585) on :
 
Sound idea. Hope all goes well.
 

---

Posted by LOA (Member # 49) on :
 
Yeah, we've checked my spinal fluid and pressure. All is well. It's pretty sick to know that I was dissappointed with "normal" results - I was hoping it would be my "answer" - though, on the other hand, increased CSF scares the piss out of me because my best friend has intracranial hypertension (rare in the general population, oddly common in the world of difficult to treat headache sufferers) and she's had a HORRIBLE time... even sicker than I am. As selfish as it is, I don't want to go down that path.

Moving on to you, Jason, please heed my advice - if your hospital is anything like mine, tell them you are a vegetarian upon check-in. You do NOT want to risk the meat. At my hospital, the food can be worse than the ailment. Pretending to be a vegetarian is the only thing that has gotten me through.... *hugs* I'll be thinking of you.

Lee: I'm glad that the triptan is working for you. Triptans are effective in about 80-90% of migraine sufferers, if taken early in the attack. They typically have a low incidence of side effects, too. This is good! I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place, and what person volunteered to be the "guinea pig," if you will? I'm just not that brave.....

I'll post my most recent medical news in another post following this one.

~Liz
 

---

Posted by LOA (Member # 49) on :
 
okay, here's an update on me... it's borderline positive, so that'll be a nice change.

I've been back at work for... 3 weeks, I think.

I've missed 1.5 days in that time, but you know - considering that I missed 10 weeks before that, I consider this to be VERY solid improvement.

My average daily head pain has dropped considerably. Instead of a constant pain of 8 or so, like I experienced for so long, I have now settled in to peaking at about a 5 each day, but spending most of the day at about a 3. This is GOOD. I still have some bad days, but overall, HUGE improvement.

I attribute the change to a few things. One, the ER treatment broke the cycle of status migranosus. That was key. Two, my preventative, Topamax, is at a dose where it's doing something, so that's good, though history dictates that it will be relatively short lived. I'm on my 4th dosage increase, and I can go 4 more before the side effects are too overwhelming to go on. That gives me roughly another 4-6 weeks, depending on how fast my body adapts.

Also, the weather has finally straightened out - barometric changes are a BITCH for my migraine disease. Now that things are finally straightening out, my head isn't feeling the wrath of mother nature as much.

Plus, I'm getting the sleeping issues under control. That hasn't been an easy feat, BTW.

I completed a sleep study last week. Interesting news came of it. As suspected by my new (and MUCH better!) sleep doctor, I do not have insomnia as a primary sleep condition. This is important, as it explains why all of the treatments for insomnia that I've been given through the years have not helped for long - we were treating an ailment that was not a major concern in my life. Insomniacs not only never sleep, but they are never tired. While I have periods like that, I can directly link those periods to medications or specific events - meaning my periods of true insomnia are secondary and really, quite normal for what is going on at the time. What I actually have been diagnosed with, and they line up perfectly with my daily symptoms, sense now that I know more about the conditions, would be atypical narcolepsy and idiopathic hypersomnia. These diagnoses were not a stretch - any sleep doctor who would have asked me a few questions through the years should have caught the symptoms. I'd just never had a doctor ask me any questions before, and I just took the insomnia diagnosis and patient-blame at face value. My view of narcolepsy has always been the Hollywood rendition - not the way the disease really plays out and I'd never even HEARD of hypersomnia before! But here I am, and if the shoe fits... well, it does.

It feels good to know that it's not "just me" and that now, MAYBE, there can be a fix...

The narcolepsy diagnosis is called atypical right now because I didn't fall straight into REM sleep during the day, like most patients would, but I'm also on a medication that prohibits REM sleep, so he believes that to be why. Hypersomnia means I have excessive daytime sleepiness for no known reason - even when I get "enough" sleep, I'm still sleepy.

To correct this, we're going to wake me up during the day, which should help me to sleep better at night. At least, this is my understanding. I'm still trying to get a full grasp of these two conditions, as the diagnoses are both very new.

I'm really excited about the treatment plan though...! It's a completely different way of treating my sleep problems, and I feel really optimistic, because obviously the other things we've tried haven't worked

I've been prescribed a low dose stimulant (ADHD medication, to be specific) 3 times a day to start with. It's supposed to last about 4 - 6 hours, so I take it at 7, 11, and 3. I crash REALLY hard when it leaves my system, so that should theoretically make me fall asleep better. Plus, the added activity during the day will hopefully help me to stay asleep at night. We shall see. I started the medication today, and already I was late taking a dose of the medication and felt the crash.... it's CRAZY! While I'm on the medication, I don't feel high, or loopy... just awake. More awake than I've felt in MONTHS! Everyone at work noticed and commented today that I just seemed more alert and attentive. Even when I stopped in at Car Toys, the installer noticed that I "seemed like the Old Liz again" - I guess this is a good thing.

So that's the update for now. The other good thing about the stimulant that I was put on is that it has shown promise as a migraine preventative - I actually requested to use this one out of the options I was given for that reason - maybe I can kill two birds with one stone? We shall see.

In other news, I am having foot surgery on May 23rd to have a "thingy-doo" removed from my ankle - I can't pronounce (or even begin to spell!) what it's called, but it's non-cancerous, so that's good, seeing that my cancer-doctor found it at my cancer check-up. It's only being removed because of the location - my shoes rub on it and cause a lot of irritation. It will cause a problem in the long run, he says. It's better to take it off now, than later. *shrug* He promised I won't need crutches if I do it now, so I agreed. I'm NOT coordinated enough for crutches!

Also, we had to take me off of Percocet - I have developed an allergy to oxycodone. It was making me itch so bad that I had to take it with a double dose of benedryl (keep in mind, I'm already on TWO daily allergy meds, ANYWAY!), and even then it got to the point that I was scratching myself raw and breaking out in a rash. So we've gone back to Vicodin. I went off of the Vicodin originally only because of some weird coverage stuff with my insurance at the time. That's not an issue now, and I can get the strength I would need, theoretically, so hopefully hydrocodone is effective. It's been a while, so we'll see.

I have no other updates to report. Except that today my head pain was so low that I CRANKED up my stereo. It rocked. I think I'm going to buy a new head unit. One with higher output. And a better EQ. That will be my gift to myself for having fewer headaches and for returning to work. Now I just need to find a stereo that is good enough for my stereo-snob attitude

Thanks for tuning in, folks! I'm going to do some homework now.... ta-ta!

~Liz
 

---

Posted by TSN (Member # 31) on :
 

"I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place..."

My understanding is that there's some sort of general similarity between human and porcine anatomy that makes it feasible to implant pig bits in people. I assume, in studying the physiology of pork, someone noticed this and then said "hey, maybe we can use this". Rather than someone asking "what do you suppose we could transplant into people?", and someone else saying "um... what about pigs?".
 

---

Posted by Lee (Member # 393) on :
 
For some reason throwing this into the conversation reminds me of Alice Cooper's band discussing the origins of the name Milwaukee in Wayne's World, but I believe one cannibal term for their, er, fare was "long pig."
 

---

Posted by B.J. (Member # 858) on :
 

quote:

---

Originally posted by TSN:

"I am fascinated (and a bit baffled) by the fact that a pig valve will be used in the operation.... while I think that's amazing and wonderful, it does make me wonder - who thought to try that in the first place..."

My understanding is that there's some sort of general similarity between human and porcine anatomy that makes it feasible to implant pig bits in people. I assume, in studying the physiology of pork, someone noticed this and then said "hey, maybe we can use this". Rather than someone asking "what do you suppose we could transplant into people?", and someone else saying "um... what about pigs?".

---

Also, we've been using pig valves (even entire hearts) for a while now, since at least the 1980s.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Liz, glad you're doing so much better (generally speaking). I get that Percocet "itch" if I take too much (like last night!).

Lately (this past week) my pain level's gone up to a 6 when I'm changing the dressing (doc wants to try Acetic Acid again, but after waking last night in CRAZY pain, I'm going back to antibiotic cream base untill I get into the hospital on monday).
I is not happy.

Shik, no, they wont allow me to build any models in there- it's hardly an ideal hobby environment, after all.


Lee, I think you're right- the pace of medical science is so fast just now that in a decade, they will probably have something far better ready (and the addition of a pig valve seems less intrusive somehow than a metal part).
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Back from hospital. Still kickin'

There was much pain and blood (kinda a suprise there)but I'm back home (and working as of this morning) and ready to begin this new Platlet Therapy tomorrow.

Hmmmm....I've heard a few more "You need Dr. House" jokes from nurses and witnessed my (cool) Doctor step on an Infectious Disease specialist like a bug (for telling me "we need to realise that there may be no way to heal this wound and you might have to live with it for the rest of your life").
NOt something you'd ever want to hear in a hospital- particularly as he'd only seen my leg once.
If you've never seen a doctor get dressed down (politely), it's an amusing experience.
Dr. Negative dids not return to offer more opinions.

Aside from that, I got to experience pain at the 8 or 9 lever for the first time in several years- followed by an injection of Demerol and an orderley to mop up the blood.
I handled it much better than last time things were so bad, so that's something.

Hmmmmm....Demerol am good..

Oh, I also read the first five Dresden Files books-really worth reading- much better than the series (and I like the series a lot.

How's everyone else? anyone heard from Jay?
 

---

Posted by B.J. (Member # 858) on :
 
Heh. Imagine what happened to that doctor after they were out of earshot of any patients.

Hope this new round of treatment goes well for you. At least you're being positive about it.
 

---

Posted by Kosh (Member # 167) on :
 
Haven't read the whole thread, but it aint looking so good around here right now. I hope you all find some relief.


Lee, I know three peoploe who have had valve replacements, and all have done well. If she should decide she wanted to have the surgery done elsewhere, one of the best heart hopitols in the world is in Clevelend Ohio. My brother had a valve replaced, two by-passes and a Liver transplant, all in 8 hours, and you'd never know it to look at him. I have there phone number, and will check here for the next couple of days.


Medications have changed a lot in the last five or six years, no reason for her to have to take warfarin. I've forgotten the names now, but there are a couple of meds for thining blood that are a lot easier then Warfarin, and don't have to be constantly monitored.


Hope the rest of you are doing better.
 

---

Posted by Lee (Member # 393) on :
 
Thanks Ed, but I've Googled her surgeon and he seems da bizness. Not sure BUPA would cover an op in Ohio anyway. . .
 

---

Posted by Jay the Obscure (Member # 19) on :
 
every day on the green side of the grass is a good dayandsomething to bet hankful for
 

---

Posted by Ritten (Member # 417) on :
 
'Cept I've always heard that the grass is greener on the other side....
 

---

Posted by HopefulNebula (Member # 1933) on :
 
JA: I know somebody who'd been dealing with a massive staph infection in her spine. Burst two vertebra. While she was recuperating, a doctor she'd dealt with in the past (don't remember what for, but it was something completely unrelated to anything in this incident) walked by and decided to pop in. He then proceeded to yank her up to a sitting position by one arm (without warning, natch) and tell her that this was all in her mind and that she should walk it off. And all this was while the massive allergic reactions she'd been having to the first antibiotic cocktails were still wearing off. She was still all swollen and stiff, not to mention the fact that she'd recently had back surgery (to repair the burst discs).

As far as I know, he's still practicing.

On a different note, I have a dermo appointment in a week. I've had one precancerous mole removed each summer for three years now, and I just know I'm going to break tradition this year. (Whether it's for having nothing at all or for having more than one is anyone's guess.)
 

---

Posted by LOA (Member # 49) on :
 
Yay for mole removals!

I had one a few years ago... the scar is horrendous - not as bad as the biopsy results though were though - glad we got that one when we did. I cut out the daily trips to the tanning beds after that....

I just had my yearly appt with the dermo a few weeks ago, and after all of the poking, prodding, and picture taking (including a borderline pornographic one of a mole on my side that I was topless for - my aunt is convinced it's on the net somewhere already...) there were no "problem areas" to be found in the cancer realm. Woot!

I did have a dermafibroma removed from my ankle though because it rubbed on my shoe and bothered me. In retrospect, I should have left it there. I was better off before. After finding out that hard was during "surgery" that it's not just dental anesthetics that I'm immune to (OUCH!) and making life hard for the doc in that respect, the wound is just NOT healing well.... even with careful cleaning and maintenance, it managed to get infected, and it kept splitting open in between the stitches every time I took a step. Ugh. I got the stitches out yesterday (5 of them for an itty bitty little thing - doc sure was thorough! ), after 12 days, and the entire top layer of stitches did nothing - the whole thing just opened up. Thankfully, the bottom layer did what they were supposed to do (that's ANOTHER 5 stitches for a bump smaller than a pencil eraser), so it's not a gaping bloody mess (sorry for the imagery...) but they ended up gluing the skin together and putting some stupid sticky bandage on that's supposed to hold my skin tight for 7-10 days.

It had come off by the time I woke up this morning. I guess 7-10 days is the glass half-full estimation

So now I'm using butterfly bandages on it instead and hoping for the best.

What got me though what when said to the nurse yesterday, all non-chalantly, 'cause I'm not stupid, "This is going to scar pretty badly, huh?" and she says "Oh, no... you'll hardly be able to see it!"

Right. Hello! The wound has been healing for 12 days and it's not healing TOGETHER. It's completely split open AND it's already raised. In the best case scenario, there's going to be a scar. Anyway, it's just my ankle, so I'm not too worried about it. I don't have a foot fetish, and neither does Scott Now that the stitches are out, at least it doesn't hurt - the stitches were a killer 'cause they kept pulling with each step. I'm just more irritated that the nurse didn't say to me "Yep, you're gonna have a scar. Sorry, sweety..." Not big on sugar coating at this point in my life

Here's to a surgery-free appointment for you this time through, HopefulNebula! Keep us updated!!!!

~Liz
 

---

Posted by Sol System (Member # 30) on :
 
I had a mole removed once, but nothing gross happened.
 

---

Posted by AndrewR (Member # 44) on :
 

quote:

---

Originally posted by LOA:

I just had my yearly appt with the dermo a few weeks ago, and after all of the poking, prodding, and picture taking (including a borderline pornographic one of a mole on my side that I was topless for - my aunt is convinced it's on the net somewhere already...) there were no "problem areas" to be found in the cancer realm. Woot!

---

Well at least you felt your Dermo did something - I was at my 8-12 monthly visit - and she hardly did much at all. She's so quick (I just hope she knows what she is doing) - this time she didn't even ask me to take off my pants... I actually had to stop her from showing me the door to point out a few things I was interested in having her check (SKIN things PEOPLE! Get your minds out of the gutter!) )

THEN she basically spent the rest of her time gathering n-values for her next journal article... like I wasn't going to suss out what she was doing. I hate that. People utilising others to up their numbers for their work using people who are 'none-the-wiser'. I remember one year in undergrad - a lecturer had a 'prac' and they handed out a piece of paper to record such and such over the next week - so n would probably = ~400... and well of course they probably didn't take into account that most people made up the results and the start of the next prac?

Andrew
 

---

Posted by Kosh (Member # 167) on :
 
This isn't the place to complain about a hangnail is it!

Glad you got as good doc Lee. They are few and far between. Probably right about not paying outside of Britton too. Hadn't thought about that, even though I don't know if my insurence would allow me to go there, being in another state. I'd go anyway if it was serious, but I've been fortunate.

I just got my weight down to a resonable 201, from 255. Had some test that turned out to be nothing. A new Doctor found a ten year old lump and got afraid I had cancer. I knew better, but I did the MRI anyway.

With all the heart disease and High Blood Pressure and diabeties that runs in the family, It's a wonder any of use are still alive, but we are 6 for 6. There were six of use kids, and we are all still here. Rqanging from 61 to my 46.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, my pain level is now elevated up to a "4" from a "2" and my doc is honest enough to say "I have no idea why".
That sucks- I've been in more pain since I entered the hospital this last time.
I'm getting worried about the damage my liver is sustaining due to the (massive) Percocet consumption too.

I'm having outpaitent "surgery" next tuesday- it's technically surgery but it's not invasive: the Doc says he'll knock me out (tough to do with my resistance usually- I was awake for the whole last round in the O.R.) and he'll "debried the wound" (involves taking a sorta X-Acto device and scraping away any necrotic tissue and fibrin).
Then he'll do the new procedure wich involves spraying my own red blood cells direcly onto the wound bed.
Witchcraft my be involved as well- he's kinda vague on the details.
 

---

Posted by Peregrinus (Member # 504) on :
 
Again I feel guilty for doing so well. I've been off the prednisone since Sunday the twenty-somethingth of May, with no problems. Only med I'm still on is 100mg daily of azathioprene. The steroid puff has pretty much gone away, and my waist is back to about 30". Just above my belly button, though, is where things weren't able to hold together post-surgery (yay steroids!), and at some point I have to go in to have the largest hernia my surgeon has ever seen fixed. Followed by six weeks of complete inactivity. So I think I'll do that over winter break, between school terms, and take the time off from work, too. Need to get a custom-fitted cotton duck (read: non-stretchy) corset for after the surgery, too, to hold things together as they heal.

--Jonah
 

---

Posted by Jay the Obscure (Member # 19) on :
 
MRI, so od news for a change. I just took an
> MRI, and there is no significant growth from the
> last MRI, so yeah!!!
 

---

Posted by Jay the Obscure (Member # 19) on :
 
MRI, so od news for a change. I just took an
> MRI, and there is no significant growth from the
> last MRI, so yeah!!!
 

---

Posted by Ritten (Member # 417) on :
 
It did bear repeating.

I had a minor sinus infection.....
 

---

Posted by Shik (Member # 343) on :
 
Large painful bump on neck, aft starboard quarter. Possibly bitten by spider while sleeping. Awaiting emergence of related superpowers.
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
Well no hospital trip for me, but the apartment complex next to mine caught on fire. Nice traumatic experience.
 

---

Posted by Peregrinus (Member # 504) on :
 
Oo! Weenie roast!

--Jonah
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
My apartment was hickory smoked!
 

---

Posted by Peregrinus (Member # 504) on :
 
Someone built an apartment complex out of hickory wood?

--Jonah
 

---

Posted by Kosh (Member # 167) on :
 

quote:

---

I just had my yearly appt with the dermo a few weeks ago, and after all of the poking, prodding, and picture taking (including a borderline pornographic one of a mole on my side that I was topless for - my aunt is convinced it's on the net somewhere already...) there were no "problem areas" to be found in the cancer realm. Woot!

---

quote:

---

"Oo! Weenie roast!"

--Jonah

---

I'll give you weenie roast...
 

---

Posted by Ritten (Member # 417) on :
 
But then you'd have nothing to play with.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I did my surgery and my pain level is now a "5" as result- probably a result the debriedment the doc performed.

Holy crap- "5" is VERY painful. Having real difficulties dealing with this on a daily basis.

My boss gave me from Sunday through Thursday off for my birthday (the 4th) but it's looking to be a long weekend of prone immobility and painkillers.

Suckin'.
 

---

Posted by HopefulNebula (Member # 1933) on :
 
What kind of boss gives you a birthday off? And how do I get to work there?

Anyway. I guess I finally have something to say in here. Not as acute as everyone else's stories, but still sucky.

(medical intro: Hi, I'm Nebby. Severely underdeveloped nervous system, mildly autistic, sinuses extremely prone to infection, severe chronic depression, and pretty much screwed from all genetic fronts.)

The short version: Around March of this year, I started having problems with my energy level. Namely, I didn't have one. After missing loads of classes in a week, I finally hied myself over to the college's med center, where they did a few blood tests and ruled out mono and anemia. Not long after, I got what I thought was a nasty sinus infection, and thought "oh, that explains it." I went on Cipro for 10 days and thought that was the end of it, since at least my sinuses were better.

Well, it wasn't. After my grades tanked even further because of this, and the energy problems persisted even through the summer, I went to my primary doctor. He tells me that the test the school did for mono is only effective for a period of about 5-10 days, which to a months-long infection is nothing. Anything outside of that gives a negative. So, I had a buncha blood drawn for tests that are actually effective.

Good news is, my thyroid's lovely.

Bad news is, I did contract mono sometime in March.

At least I'm not contagious now, and it's not severe. Never was. One of my cousins missed a year of middle school when he had it, because when he had the energy to get up, his spleen was too inflamed to risk it.

So, I'm writing to my advisor re: retaking classes and the med center re: why the fuck don't they do an effective test. *sigh*
 

---

Posted by LOA (Member # 49) on :
 
Ooh... mono... ick. I had it back in '02. I think it took a good 6 months before I really started to feel closer to normal.... I was originally told I was okay, too. The minor emergency quack I first saw told me I just had a bad cold and to take some Robitussin. 3 weeks later, when I thought I might be in serious risk of coughing up an internal organ, I went back to the doctor, certain my self-diagnosis of bronchitis would be correct. It wasn't, as I had mono, but still... it explained why the Robitussin wasn't working *eye roll*

I hope things turn around for you soon.... mono is a heck of a beast. Try to rest - I know it's hard to do. But it helps... it wasn't until I took a leave of absence from two of my jobs and cut back to just 40 hours a week (it was a new job, so I had to work the full 40) that I started to improve at all - my normal 60-80 was just keeping me sick....
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Mono....hmmm....someone's been kissing the wrong people....repeatedly!
Sounds sucky though.

I'm still hanging in there- thanks to Percocet (mine own personal savior) and stubbornness.

Anyone heard from our other sickly folk?
Jay? Lee, how's the wife doin? You doin' okay Liz?

I've been scarce for over a month now and may have missed something...
 

---

Posted by Jay the Obscure (Member # 19) on :
 
My tumor is apparently busy migrating from the left sideto th e right side of my brain
 

---

Posted by Peregrinus (Member # 504) on :
 
*sigh* Jay, stop that.

--Jonah
 

---

Posted by Mikey T (Member # 144) on :
 
Shit...
 

---

Posted by HopefulNebula (Member # 1933) on :
 
Meep. *sends a very futuristic, highly effective tumor-seeking, non-brain-getting missle your way*

edit: Oh. Oh yes, I forgot the other reason I was in this thread again.

While I'm not contagious now unless I share copious amounts of saliva with someone (which I assure you isn't happening), and I wasn't when I was first diagnosed, I was when I got home for summer. Add that to the fact that the hot water in the dishwasher ins't hot enough to sterilize stuff and the fact that mono incubates for 6 to 10 weeks, and now my sister's absolutely miserable. She has it worse off than I ever did; fever of 103. Had to go on prednisone for a little while because her throat was so swollen.

Fair warning: I'll make my sister lick the maker of the next "kissing disease" joke repeatedly. And not in the good way (unless you're kinky like that). She's still good and contagious.
 

---

Posted by LOA (Member # 49) on :
 
Things are relatively stable here in my neck of the woods...

When I got the Narcolepsy/Hypersomnia diagnosis in May, the doctor put me on a low dose of stimulants (ADHD meds, actually) as an attempt to wake me up. It didn't do a damn thing, in in the long run, so rather than piss around with it, he evaluated my chart history, saw that my body metabolizes medications in an UNREAL fashion and just decided to "pump it up" a bit by doubling my dose - to the highest dose approved by the FDA.

I've been taking that since early June, with no effect on my quality of wakefulness or sleep. Further, I'm just as exhausted now as I ever was. However, an unexpected thing DID come of it - My migraines suddenly got a lot better. Go figure.

It seems that a high dose of stimulants coupled with a high dose of my current anti-epileptic (and the other preventatives I take standard) are the winning combo we've been waiting for.

Whereas I usually have to up the dose of the anti-epileptic every 3-7 days to maintain any type of relief, since increasing my stimulant dose, I haven't had to touch the anti-epileptic at all. It's like I'm on a teeter-totter, and for the moment, it's all perfectly balanced.

This has presented quite the dilemma, in that while we were hoping that the stimulant WOULD help my migraines, we were hoping that it would help my sleep issues as well - killing two birds with one stone, so to speak. Now, I'm somewhat stuck, as I have the best migraine control I've ever had and I've backed myself into a corned with NO possible way to try and resolve my sleep issues because I'm topped out on the stimulants already.

Complicating matters even more is the fact that my sleep doctor, who prescribed the stimulants, knows NOTHING about migraines like mine. My Neuro doesn't prescribe stimulants at ALL for migraines (it's a pretty "far out there" treatment that very few Neuros will use). So I'm sort of playing "go between" as the gineua pig in this little debacle.

For now, it's sort of been determined that the migraines are the greater of the two evils, until something happens to prove otherwise, and I am going to keep taking this combo to control that condition and let the sleep issue to do its thing.

If the sleep issues cause further problems (and they could) or the meds stop working for migraine control (which my history states they likely will) then we'll start to fuck with shit again. But for now, we're just going to sit back and watch with the attitude of "if it ain't broke, don't fix it."

Now, this isn't to say that I don't have migraines anymore - still have them daily. But they are better than they have been by a lot. Further, the BAD ones now have identifiable triggers - that's never happened before. Every major migraine attack I've had since I started the increased stimulant dose has been because of a change in weather. Mainly thunder storms. I've NEVER been able to ID a trigger for a major attack before. Ever. So this is progress, whether short-lived or not. My Neuro told me to just enjoy it while I can...

Side note: I'm not able to treat my major attacks as well anymore - my Percocet script is gone, replaced by Vicodin due to a recently developed allergy to oxycodone (drat!!!!). Vicodin, BTW, works about as well as - well - Tylenol. Seeing that the Percs almost weren't cutting it anymore. But on the plus side, at least I can take solace in the fact that the major headaches are fewer, father apart, and I know WHY the headache they have come - and the worst of it seems to roll out with the storm front... I'll take this reprieve while it lasts, for sure.

That's my update. I hope I didn't jinx myself *knock on wood*

~LOA
 

---

Posted by Jay the Obscure (Member # 19) on :
 
So, it now appears that therieis nothing left to be done medically with the tumor and It could soon cause a fatal stroke or a heart attack psuch that we are just starting to look for cemetary plots
 

---

Posted by Shik (Member # 343) on :
 
Fuck that noise. We're having you taxidermied. Taxidermied, & put in Charles' parlor.

You realize you did this to yourself, yes? All those damned politcal debates, & NOW look where you are. POLITICS CAUSES TUMORS. (It IS a tumor, Governor Schwartznegger!)
 

---

Posted by Charles Capps (Member # 9) on :
 
I ... have no words.
 

---

Posted by LOA (Member # 49) on :
 
Oh, Jay... my heart is with you, my friend... please let me know if there's anything I can do to help... I know it's not much, but you're in my thoughts and prayers... *gentle hugs*
 

---

Posted by Peregrinus (Member # 504) on :
 
We have to cut off the blood supply to the brain. Starve the cancer cells...

But that said... *sigh* I don't believe in "hopeless" situations, but I'm damned if I can think of what to do, Jay. :-/

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, there goes my chance to bemoan my pains and troubles.


Fuck Jay....dont give up! I know how corny that shit sounds, but spontaneous remissions happen every day- some lasting years.

I ran into an old friend of mine a few days back and he commented about "how political" I've become (I guess I was ranting on about Bushco's flaunting power or something) and I blame you.
You pointed out a lot of crazyness that I'd have missed otherwise....and probably made all my friends roll their eyes a thousand times as I went off about this or that.
Stick around- I need more info to rant about....and the elections are still more than a year away!
You could miss the Clinton/Gulianni split-ticket.

Liz, your condition sounds a lot like the diagnosis given to Mr. Burns, explaining how all the illness are at a state of perfect balance....to which he replied "So what you're saying is, I'm Invincible."

Now that I think of it Jay, your situation sounds a lot like when Quark thought he was going to die (on DS9). Been auctioning your remains online? I'm betting CHarles is the buyer...
 

---

Posted by Lee (Member # 393) on :
 
Still waiting for a date for Kate's op. Supposed to be sometime in September. I presume it'll be worth the wait, since in recently published league tables of cardiac surgeons, her guy has a 100% success rate as opposed to the average of 98.something% (cue someone at work saying to her "Well, maybe you'll be his 1%" and no, I'm not making that up). She gets tired all the time now, and has wildly different BPs in her arms. I'm beginning to worry, a bit.
 

---

Posted by Mars Needs Women (Member # 1505) on :
 
I'm sorry to hear about your tumor Jay. Don't give up. Where there's a will, there's a way. Can't you seek a second opinion?
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Lee, sounds like you've got the best man for the job.
Surgically speaking, a month away is not long at all, particularly if you've got a real specialist.
When I had that graft put on my leg, they had scheduled the entire week's worth of surgery suite time (they had me come in two hours prior to my surgery time jsut in case someone had finished early).
Good luck to you (and yours) on the operation.

Jay, I'm hoping things have improved for you (obviously). That second opinion is probably a good idea (though I'd imagine you've seen a ton of doctors by now).
 

---

Posted by AndrewR (Member # 44) on :
 
OK This is probably no help at all but when I was reading this e-mail I thought of Jay...

quote:

---

Dr Charlie Teo is a paediatric neurosurgeon and founding director of the Centre for Minimally Invasive Neurosurgery at the Prince of Wales hospital in Sydney. In addition, Charlie is the founder of the Cure for Life Foundation, a charity organisation devoted to the advancement and treatment of patients with brain tumours. Charlie has courted prominence and controversy through his use of keyhole neurosurgical techniques to remove so called inoperable brain tumours. He has recently been featured on 60 minutes, Australian Story and RPA.
Date: Friday 31st August 2007
Time: 6:30pm to 9:00pm
To be followed by complimentary supper
Venue: UQ Centre, University of Queensland
St. Lucia
THIS IS A FREE PUBLIC LECTURE
NO RSVP IS REQUIRED
FOR MORE DETAILS VISIT UQMS.ORG

---

quote:

---

Originally posted by Charles Capps:
I ... have no words.

---

Neither do I - clearly I need to get around these parts more often.
 

---

Posted by Lee (Member # 393) on :
 
Kate's op was yesterday morning. Seems to have gone OK, a little bit of bleeding they were concerned about but since she's already been moved out of the ICU after only a day, I guess that's now stopped.
 

---

Posted by Sol System (Member # 30) on :
 
That's very good to hear.
 

---

Posted by B.J. (Member # 858) on :
 
How's your daughter handling all of this?
 

---

Posted by Lee (Member # 393) on :
 
She's OK, she does occasionally ask where her mummy is, and say she wants to see her, and I've learnt not to tell her when I'm going to the hospital because she just wants to come too. We're hoping Kate will be well enough to see her tomorrow, I think today is pushing it. She's able to get out of bed and sit upright, and the drains have been removed (don't ask).
 

---

Posted by PsyLiam (Member # 73) on :
 
Wow. I hope she's okay. Give her my best!
 

---

Posted by Lee (Member # 393) on :
 
Willdo. She up and moving around a lot more now, and has finally been able to have a wash. I saw the scar today, lovely. And, since they now allow you to have mobiles on wards, she called me to tell me what she had for lunch - chicken curry!
 

---

Posted by Jason Abbadon (Member # 882) on :
 
CHicken Curry? Well, at least she's already in the hospital...
 

---

Posted by B.J. (Member # 858) on :
 
I'll never understand the British affinity for curry.
 

---

Posted by Fabrux (Member # 71) on :
 
Not just British. Our resident curry god is an Aussie. But he rarely shows up these days...
 

---

Posted by Peregrinus (Member # 504) on :
 
One of my favourite souvenirs from Japan is a jar of "Genuine Indian Curry"... with a picture on the label of a Cherokee chief in full battle headdress.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Sweet- like going to the Miami sushi bar run and operated solely by Cubans....
 

---

Posted by LOA (Member # 49) on :
 
So, one of my medications is making all of my hair fall out... as such, my hair stylist put the kabosh on my highlights *sigh* and we've decided that it's time to cut my hair short *double sigh* - I love my hair more than anything, and it's always been long, but this is one of our preemptive measures to try and minimize the issues... I keep breaking the vacuum drum trying to sweep up my hair loss. Pleh.

So what do you think? Which "'do" do I want?



Short hair.... icky.... but better than headaches, I suppose... vanity is less important than health.....!

~Liz
 

---

Posted by Peregrinus (Member # 504) on :
 
How long is your hair currently? If it's long enough, maybe consider shaving it off and having a wig made from it?

--Jonah
 

---

Posted by Shik (Member # 343) on :
 
Get it all! I fully approve of your "interchangable head" technologies!
 

---

Posted by Fabrux (Member # 71) on :
 
Second row, third one to the right. IMO.
 

---

Posted by Da_bang80 (Member # 528) on :
 

quote:

---

Originally posted by Fabrux:
Second row, third one to the right. IMO.

---

quote:

---

Originally posted by Lee:
Either of the middle two on the bottom row work for me.

---

 

---

Posted by LOA (Member # 49) on :
 
Well, that's what I look like with those haircuts... In the original, I had long auburn hair with blonde highlights *L* It was taken in June... I weighed more then. It was nice... I could still find clothes that fit at the store...

This is a recent pic... less than a month ago. I look pissed off because I was. Usually I'm a happy person.... what can I say? Don't cross me! Sorry I don't have a happy recent pic. I'll post one when I get a good one of the new 'do


 

---

Posted by Shik (Member # 343) on :
 
This is a banner day in Flare history.
 

---

Posted by TSN (Member # 31) on :
 
That picture has a definite "ten seconds later, she whipped a pair of [insert cool weapon here] from behind her back and proceeded to kick the asses of everyone in the room, possibly in Matrix-style slow-motion" vibe about it.
 

---

Posted by Peregrinus (Member # 504) on :
 
Liz, you are indeed Teh Hawtness�. Don't ever let anyone tell you otherwise. Now get your brain to fall in line, and you'll be perfect.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
A hot pic indeed- unless those jean bottoms are really tight and your calves are freakish popeye-like apendages....and, I suppose, you could have really ugly hands....or hooks or something.
 

---

Posted by Diane (Member # 53) on :
 
Go for the curls! OK, I have curly hair, so I'm biased. But it's a nice change if you've had straight hair all your life.
 

---

Posted by Lee (Member # 393) on :
 
My wife's back in hospital as of last night. High temeratures, attacks of shivering, and a rash. Hopefully and infection they can treat. But if she's rejecting the new valve...
 

---

Posted by Peregrinus (Member # 504) on :
 
Aw, dammit, Lee... She been on immune-supressants or anti-rejection drugs? And I can't remember if you said -- is this from a human donor or from a pig's heart? If from a human, enquire into doing a marrow transplant in addition. Studies underway show it is an effective counter to rejection.

I know I picked up a couple staph infections first time I was in hospital and during the recovery period after. Pernicious and nasty little buggers. If she has one of those, do all you can.

Either way, I'll be sending mojo.

--Jonah
 

---

Posted by Shik (Member # 343) on :
 
Yeah, like he needs a superintelligent evil chimp to add to his woes.
 

---

Posted by Peregrinus (Member # 504) on :
 
*sigh*
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, at least she's under supervision and care- they'll probably I.V. her chock full o' stuff like Cipro and she'll be right as rain (except that Cipro makes your pee and sweat stink something awful).

Luck and health to you and yours, Lee.
 

---

Posted by Lee (Member # 393) on :
 
Thanks. She's much better now. Had an endoscopy on Friday which showed no infection or rejection, it just seems to be some strange infection or illness - maybe even measles, which she's already had. Means she gets a nice room all to herself, that's gold dust in the NHS!
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Cool.
A private hospital room is standard here- I've been "in" four times now and only once shared a room (and that hospital was craptackular).
 

---

Posted by Peregrinus (Member # 504) on :
 
Make damned sure they check for all strains of staph. Pernicious little buggers. Hard to get rid of, and a deep staph infection can be fatal if left to run for too long. Don't jsut assume that they are thinking of everything just because they're doctors.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
But no worries, riiight?
Fuck-o, Jonah- you sure know how to think "Doom-an-Gloom".
 

---

Posted by Peregrinus (Member # 504) on :
 
Would you rather I sat on it and she did have a staph infection? From being near death myself, trust me it's faaaaaar better to eliminate all the possibilites before you let your guard down.

--Jonah
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I suppose so- I just read about MRSA and it fits perfectly with the cause of my leg wound (which was mis-diagnosed as a Brown Recluse bite).
 

---

Posted by AndrewR (Member # 44) on :
 
A Recluse bit you!?!
 

---

Posted by Peregrinus (Member # 504) on :
 
Lee, I've been seeing you around the boards again lately. But no comment in here. I'm sure we're all wondering how your blushing bride is doing.

--Jonah
 

---

Posted by Lee (Member # 393) on :
 
Oh, yeah. That. Um, she's fine. Scar is healing nicely, but she's still in quite a lot of pain in her ribs and collarbone from where they were broken or shoved aside. They never did figure out what the mystery illness/infection was that landed her back in hospital. Does she feel better then she did before the op? I don't know, early days, she still gets tired easily. Supposed to be going back to work in 10 days, that'll be 8 weeks since the op as she was originally recommended. Only now the Cardiac consultant is telling her she really needs three months. I think she's going to try it and seee hos she feels, maybe do part time.
 

---

Posted by Peregrinus (Member # 504) on :
 
Take it from someone who recently had their squishy bits worked on -- whilst it does only take a couple months to heal after the surgery, it takes far longer to heal completely and rebuild your metabolism and stamina. Daily walks, maybe bicycling, if she has one. Anything to gradually elevate the heartrate without straining the muscle or the sutures.

But here's to another chance. Use it well, you guys.

--Jonah
 

---

Posted by Daniel Butler (Member # 1689) on :
 

quote:

---

Originally posted by LOA:
I don't think the fluid helped so much... I didn't seem to be dehydrated, and I had to get up and go to the bathroom more that night than ever before!!!

As for the question about the facial muscles, it was actually rather amusing, until it got scary.

I had two cycles through this saga - it started when my jaw clenched suddenly, and I began to have a hard time breathing. I couldn't open my mouth though, because I had no control. Then, my lips started to pucker out, and I looked absolutely ridiculous, but there was nothing I could do about it. Talking was impossible, and I just had to wait it out. Then, the jaw loosened, and I could talk for a few minutes, but with a horrid lisp, and my voice was really high. It was bizzare. It was like my tongue was too big for my mouth or something. Then my jaw got stuck in the "open" position, my lips curled over my teeth, and my tongue came out of my mouth, and I couldn't breathe again.

The first cycle of this "fun" laster 3 hours total, but I was home alone, and I didn't know what was going on, so I didn't call for help.

The second cycle hit RIGHT after Scott got home. We laughed about it at first, because I looked (and sounded) so ridiculous, but then it got REALLY bad cause I couldn't breathe. I think I started to panic at that point, which made it worse.

Scott called the pharmacy first, and they said it was either the compazine or my topamax. They told Scott to call the ER and talk to the doc that saw me, or get me in there immediately, if my BP kept rising (I really think that was from me panicking though.)

When Scott called the ER, the doc said it was the compazine for sure, told me to discontinue it and take some Benedryl ASAP. Not and easy feat when one's jaw is stuck in the open position and swallowing is almost impossible. But we got through.

That cycle, while it was scarier than the first, by far, only lasted 1.5 hours total.

I haven't had a problem since, except my jaw is just a bit sore today... it was open WIDE - like, imagine being at the widest point of your yawn, and then getting stuck. That's where I was at.

*shrug* So now I know - Compazine + Liz = Halloween looking faces

~Liz

---

I'm still working through all of these posts, but I felt the need to reply to this one - when I was in junior high school, I was prescribed compazine for nausea related to strep throat. The exact same symptoms happened to me, but the idiot nurse practitioner my dad took me to thought I obviously needed a muscle relaxant to calm things back down, so she injected me with more compazine. Two ER's and an ambulance ride later, I was almost dead since I couldn't breathe more than a few seconds at a time from my jaw and throat clenching shut (not to mention my diaphragm quitting on me too) and with major muscle damage from every muscle in my body trying to contract as hard as it could. As soon as the doctors in the second ER found out I'd taken compazine, they gave me a massive Benadryl injection and it was *instant* relief - every muscle relaxed in less than two seconds. Overnight stay with some anabolic steroids for the muscle damage, week off school, and that was that.

The biggest reason I bring this up is that I was told at the time that my type of reaction to compazine was *extremely* rare, but you're the second other person I've heard of having it. Not so rare after all?
 

---

Posted by Daniel Butler (Member # 1689) on :
 
I just finished going through all the posts, and I just wanted to say that although I don't really know you, Jay - I'm too recent here - my heart and thoughts go out to you. Be glad you have someone like Shik to break the tension..

And Liz, look up "Modafinil" on Wikipedia - if you have narcolepsy, maybe it's something to ask your sleep specialist about. I don't think its a stimulant, so you might be able to take it in addition the ADHD stims you're on. It's a new category of drug called a eugeroic.
 

---

Posted by Jason Abbadon (Member # 882) on :
 
I'm still alive and -remarkably- my leg is still healing.

Sorta.

It's growing skin (horray!) but only along the one side (interior towards center of tibialis anterior), but, due to "masceration" due to drainage, the other side is still not making progress.

It's something though- the wound's gone from a large oval to a irregular (but smaller) shape.

Er...anyone hear anything from Jay?
 

---

Posted by Charles Capps (Member # 9) on :
 
Jay has not visited the board since September 15. :/
 

---

Posted by Daniel Butler (Member # 1689) on :
 
Does anyone know any more personal channels to reach either him or his family?
 

---

Posted by Lee (Member # 393) on :
 
There's recent activity on his Blog. . .
 

---

Posted by OverRon (Member # 2036) on :
 

quote:

---

Originally posted by Lee:
There's recent activity on his Blog. . .

---

Is there? The last entry on there I see is from this time last year...
 

---

Posted by Lee (Member # 393) on :
 
D'Oh! I saw November, you see.
 

---

Posted by LOA (Member # 49) on :
 
I need to post more often...


Daniel,

Compazine reactions like ours are rare, but certainly not unheard of, according to my Neuro - I had a less freaky, but still uncomfortable, reaction to Reglan when I was in the hospital once - there I just felt, literally, like I was crawling out of my skin, and my doc told me that Reglan is very similar to Compazine, so that's likely why. I won't take either of them now, no thank you! Phenergan is my nausea med of choice - Vistral if I'm mixing it with Percocet, as the Vistral somehow manages to take away the itchiness from the Perc....

As for the Modafinil (Provigil), you're right, it's not an amphetamine stimulant like my Adderall is, but it's also not a med they typically mix with Adderall. Usually it's one of the other. We talked about trying it instead of the Adderall, but opted against it - Many narcoleptics do VERY well with Provigil and enjoy the lack of related side effects that come with it, however in my case it has one MAJOR side effect that we can't chance - it screws with birth control, which I use to regulate my hormones as another method of migraine prevention. As such, Provigil isn't an ideal option for me....

Topamax, one of my other preventatives, also screws with b/c big time, ans as a result we've had to go to MAJOR extremes changing up my b/c to super potent stuff as a way to try and overcome the Topa. It's a nightmare...

Right now my migraines are doing really well and I haven't had to change the dose of either preventative med in months - this is a miracle of sorts. On the narcolepsy front, we're still trying to fine-tune that process - I'm taking Xyrem at night to help me sleep, and I've had a LOT of health problems come up since I started that - coincidence or related, hard to say - the list of potential side effects with Xyrem is unbelievable, but we're running a ton of bloodwork to find out for sure.

Sleep is a ton better though! I get about 4-5 hours of GOOD sleep a night. That's phenomonal! Also, my headaches are hardly existant, and when they appear, I need 1/2 as much medication to treat them and just a fraction of the recovery time.

So if we could just figure out the stumbling block of how to get my weight under control (I've lost 40 lbs now and can't stop loosing...) and fix my other new issues (which I truly DO believe are Xyrem-related and ultimately will come back to adding simple supplements in my diet to treat them), life would be almost perfect...we'll get there, just gotta be patient. I'm not complaining because I'm still so much better than I was, and the docs are working quickly to figure out what's going on with me to cause the weight loss/other symptoms I'm having so they can rule out secondary causes and properly advise me on what vitamins to take to offset the nutrients Xyrem is stripping from me (it's a MAJOR diuretic, plus it screws with some pretty important chemicals in the brain that relate to food, appetite, and metabolism...) so that I can tailor my diet and my vitamins to the medication and put some meat back on my bones. I can't afford to keep buying clothes because of weight loss - I've bought too many this year, and most of them I've only worn for a few weeks. It's TOO EXPENSIVE!!!!!

I should get more test results tomorrow... yipee!

~Liz
 

---

Posted by Jason Abbadon (Member # 882) on :
 
Well, heck! Good to hear you're doing so well (and after soooo long too!).

You gotta get that weight loss thing under control, but that's a problem most of the country would kill to have.
Hmmmm....could be a good time to start building muscle- some cardio and strength training (provided your doc is cool with it) would give you a better night's sleep too.

Anyhoo, congrats! Are you back working now that you're better?
 

---

Posted by LOA (Member # 49) on :
 
I've been back to work since late April - that was WAY before I was doing better, but I was out of short term disability leave, so back I went. We didn't even diagnose the Narcolepsy/Hypersomnia until May, and we didn't get the Adderall dose right until June, so it was a while before we realized how much of an improvement it would make in controlling my headaches.

I'm STILL working obviously, and many would argues that I'm working too much. Tons of OT - I work as much as they offer.

Plus I'm still going to school full time, though I should have graduated in August - I decided one degree wasn't enough when I finished my B.S. in Business Management in August and stayed behind to add a marketing major as well - I'll be done with that degree program in March. I also decided to go straight on to my Masters program after finishing the undergrad stuff, so I've been completing the application and entrance exam requirements for my MBA program which starts in August of 2008. Oy, vey! Lots to do, but once I'm done with it all, it'll be worth it...

Other than that, I'm also doing a few small web design projects as an independent contractor. Nothing big - I'm picky about who I'll work with and what I'll take on due to a) my experience level and b) the amount of free time I (don't!) have, but there are a few small projects that have come my way that I have agreed to do to supplement my income.

So that is my work and school life - I have no free time and I spend pretty much my entire day in front of a computer - mine or my employer's - but that's okay! Since I've been able to work so much, I've been able to pay off debts that I thought I'd be paying on for years, and my financial situation is years ahead of where I thought it would be - which is the only reason I can justify going for the masters degree. I'll be 100% debt free barring any unforeseen circumstances by the time I graduate with the masters degree, so I'll only have to worry about my living expenses (housing, food, insurance, gas, meds, etc. and my student loan payment). I can afford the degree. I never thought I'd be able to put myself in that position as sick as I'd gotten, so this is a blessing...

As for exercise, right now, all of the docs are telling me to shy away from the gym and extra exercise until they figure out the side effects I'm having. My blood work all came back normal to high as far as my levels for electrolytes, protein, magnesium are concerned, yet I have symptoms that are identical to severe magnesium and potassium deficiency. One of those symptoms happens to be SEVERE muscle cramps that come and go throughout the day/night - especially in my legs and feet, but also in my arms and hands. They are horrid and nothing alleviates them... also, there's the concern that, at least initially, if I start to work out, I could increase my weight loss by burning calories that my body needs to keep.

I'd like to get to the gym though and start building muscle soon - I won't be allowed to go straight into cardio or weight lifting even when I do start working out. I've already been told that once I'm allowed to work out outside of the general stuff I do at home, I'll have to start with very low impact stuff like water aerobics, eventually graduating to yoga, and then when the docs are SURE that working out isn't causing migraine recurrence they'll let me have a trainer work out an exercise plan for me.

Exercise is a major migraine trigger for most migraneurs and always has been for me. Ick.

So that's my update for now....
 

---

Posted by Daniel Butler (Member # 1689) on :
 
My doctor's trying me on Adderall for narcolepsy. Can't afford a sleep study to be sure of the diagnosis, though - no insurance. So I know a fraction of what you're feeling...can't imagine the rest. Hang in there.
 

---

Posted by Peregrinus (Member # 504) on :
 
My follow-up surgery is on the books for 20 December. I'll be in for five to seven days. Should be a shorter but more painful healing time. I am both very eager and very nervous. But at least this way I have plans for Christmas.

--Jonah
 

---

Posted by Daniel Butler (Member # 1689) on :
 
Good luck....May the Force be with you.

Yeah I said it.
 

---

Posted by LOA (Member # 49) on :
 
Daniel~

Short acting or long acting Adderall? I'm taking the short-acting stuff, 20mg 3x a day, but I'm going to ask to switch to the long acting stuff 'cause I keep forgetting to take doses - 3x a day is just too many times a day to trust my memory.

The Adderall does NOTHING for my narcolepsy - I can't even tell a difference when I take it, personally, but it helps my migraines, so you know... The plus side is that I have no side effects from it, with the exception that it makes me forget to eat. I guess that's very common - it'll suppress your hunger. I had to set alarm reminders for meals, and then I was fine. If something tells me to eat, then I CAN eat - I just forget to feel hungry!

Jonah~ Good luck with your operation... we'll be thinking of you!
 

---

Posted by Daniel Butler (Member # 1689) on :
 
Short acting, because without insurance I can't afford the long-acting. He started me out *really* low to work up, only 10mg once a day, and I don't see a difference. But he said he wouldn't bump it up until I stayed on that dose for several weeks to make sure it really wasn't working. (Thanks doc.)

I do feel like I can concentrate a little more for a few hours during the day. That's part of why I struggled so much in university when I was still going - I always feel fuzzy, so I can't study very well. I guess I'll just see what happens and remember that people have it worse than I do - in fact, several concrete cases of people right here. I can't feel too bad for myself in light of that.
 

---

Posted by LOA (Member # 49) on :
 
He started you at just 10mg a day? wow.... short acting only lasts 4-6 hours so I'd imagine that it's not doing much for you...

I was up to 10mg 3x a day within a week. 3 weeks after that, we doubled it to 20mg 3x a day.

Though, doctors don't usually "start small" with me... my body tends to metabolize medications like no other.....

Though Charles will likely scoff at this comment, I have no ADHD tendancies and the Adderall hasn't helped me concentrate or anything like that. It DID help to offset the cognitive SE's of the Topamax I'm taking though, I will attest to that! Topamax makes a person as dumb as a box of rocks for the first few weeks after a dose increase, but the addition of Adderall to the Topamax seems to have simply cancelled out that side effect so I'm just... me.

It's a shame that you can't afford a true sleep study, but I can understand why you can't... even after my insurance pay-out (and I'm blessed with REALLY good insurance!) my out of pocket cost was close to $700 for the overnight sleep study and the daytime nap study. I'm finally going to be done paying it off this month, thankfully.... that's a lot of money to be forking out just to have a stranger watch you sleep... but it's nice to have the raw data in front of you when making decisions on how to treat the sleep issues....
 

---

Posted by Jason Abbadon (Member # 882) on :
 

quote:

---

Originally posted by Peregrinus:
My follow-up surgery is on the books for 20 December. I'll be in for five to seven days. Should be a shorter but more painful healing time. I am both very eager and very nervous. But at least this way I have plans for Christmas.

--Jonah

---

Cool....maybe they'll play christmas musak in your room to accelerate your desire to leave.
And that crappy "Christmas Story" will be he only thing on T.V.

Or they could stuff you full of tinsel and small toys, so you'd be like a human holiday pinata.

Or you could be just fine and be out for the holiday (with lots o' painkillers to make the season unnaturally bright).
 

---

Posted by Daniel Butler (Member # 1689) on :
 
*gets rather amusing image of someone on painkillers singing "Silent Night" in a fine operatic tenor*
 

---

Posted by akb1979 (Member # 557) on :
 
Hiya folks!

I've been away for far too long!

Anyway, just thought I'd start by popping in here (here being the last topic I posted in way way back in June 2006 ) and see how everyone's doing - all better and patched up I hope?
 

---

Posted by TSN (Member # 31) on :
 
Well, I wouldn't say that...
 

---

Posted by B.J. (Member # 858) on :
 
Yeah, see this thread ( The Official John C. Webb (aka Jay the Obscure) memorial thread.) which is stickied at the top of the Officer's Lounge subforum.
 

---

Posted by akb1979 (Member # 557) on :
 
Oh no!
 

---