posted
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....
-------------------- Twee bieren tevreden, zullen mijn vriend betalen.
Registered: Oct 2000
| IP: Logged
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.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
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
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
| IP: Logged
posted
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...
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
posted
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
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
| IP: Logged
Da_bang80
A few sectors short of an Empire
Member # 528
posted
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!
-------------------- Grant me the serenity to accept the things I cannot change. The courage to change the things I cannot accept. And the wisdom to hide the bodies of all the people I had to kill today because they pissed me off.
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.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
posted
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!
Registered: Mar 1999
| IP: Logged
posted
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.
-------------------- Twee bieren tevreden, zullen mijn vriend betalen.
Registered: Oct 2000
| IP: Logged
posted
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...
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
posted
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
-------------------- "That's what I like about these high school girls, I keep getting older, they stay the same age."
--David "Woody" Wooderson, Dazed and Confused
Registered: Feb 2001
| IP: Logged
posted
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.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
| IP: Logged
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
![[Wink]](wink.gif)
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....
Printer-friendly view of this topic