posted
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...
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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posted
Hang on, at jason's? not into Jason's place? I had the semi all prepared...
-------------------- Over the centuries, mankind has tried many ways of combating the forces of evil...prayer, fasting, good works and so on. Up until Doom, no one seemed to have thought about the double-barrel shotgun. Eat leaden death, demon...
posted
Sweet. Mabye now they'll finally send me that federal anti-terror funding I've been requesting...
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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posted
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
-------------------- "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
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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.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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posted
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
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
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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.
-------------------- Great is the guilt of an unnecessary war. ~ohn Adams
Once again the Bush Administration is worse than I had imagined, even though I thought I had already taken account of the fact that the Bush administration is invariably worse than I can imagine. ~Brad DeLong
You're just babbling incoherently. ~C. Montgomery Burns
Registered: Mar 1999
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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!
Registered: Mar 1999
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posted
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.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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posted
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
-------------------- "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
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