Tuesday, October 27, 2009

XMRV and XAND - Are We Jumping the Gun?

Well, well, well. As you probably all know, earlier this month, it was announced that a new virus has been found in a large percentage of the CFS population. It has been named XMRV, for Xenotropic Murine leukemia Virus-related virus and "is one of three infectious retroviruses known to infect humans." (For more info see: http://www.codiagnostics.com/XMRV/faq.php )

Okay, so I can see why that is a big deal. CFS being linked to a virus of the same sort that causes AIDS, a retrovirus. Granted, that is news. But how big is it? And what does it mean?

In the past 24 hours it has been announced that there is now a test available for XMRV.

It costs a mere $399.00 US, and is not likely to be covered by insurance. Still, very exciting, right?

Well, I thought so, but after reading all the FAQ on Cooperative Diagnostics website (see link above) I have to ask, "Why?"

It seems to me that getting that test now would be nothing but a waste of money. Why?
Well there are a few reasons.

First, XMRV has NOT been proven to be the cause of CFS. The same thing has been presumed to be true in the past for Enteroviruses, Cytomegalovirus, HHV6, and Epstein Barr.

This makes me feel like the CFS community is being exploited, yet again, with hopes for not just with the hope of a surefire, scientifically proven diagnostic test, but a cure, even though the FAQs on Cooperative Diagnostic's website is careful to cover their backs, the propaganda they are building around all this seems aimed at toying with the vulnerabilities of a group of very sick people looking for a shred of hope to hang onto, despite the number of disappointments and dead ends of the past 20 years.

I'm not saying that the XMRV is absolutely NOT that hope, but I do believe that it is far too early to be dangling the type of promise that the researchers seem to be holding out at the moment.

I know this all too well, personally. I was very excited when I first read the news. And, ironically, the specialist who is treating me for CFS had just prescribed me an AIDS/Hepatitis medication. To my chagrin, it is not covered by my insurance...I searched for programs to reduce the price, and as I have in the past, discovered once again that if you have AIDS in this country, you will be taken care of. There are all kinds of organizations, some even government subsidized to take care of anything an AIDS patient could need, from medication, to food, and housing. That's right. I discovered that if I were an AIDS patient, I'd be so much better off than what I am, as a CFS patient. Therefore it came as just validation when I came across the NY Times article where Dr. Nancy Klimas states that if she had to choose, she would choose to be an AIDS patient over a CFS patient. (http://www.nytimes.com/2009/10/21/opinion/21johnson.html?pagewanted=2)

It is one thing for this group of researchers to release this information, or rather, release information about the potential of the research they are doing, but quite another for the lab to release a test. To me, releasing a test that does nothing but prove someone has a virus that may only hypothetically cause CFS is as bad as any of the quacks out there selling their protocols, herbs, and "promising" treatments to the desperate masses with illnesses such as CFS and Fibromyalgia. Especially at $399! Why would anyone thinking logically shell out so much money for a test that is not going to help them in the least, at least, not at that moment?!? The only reason I can think of, is what I've already mentioned. That their emotions have overtaken logic, because their weaknesses are being played upon by yet another money-making entity disguised as a helping hand. (I mean, come on, they've gone ahead and created a whole new name for a group of diseases,[XAND] just on the basis of this research? Am I missing something?)

So I don't mean to be a killjoy, but I'd like to remind everyone to exercise caution, and not get their hopes up -- just yet. Yes, this could be big. It could mean that it will be accepted that we have a serious illness caused by virus of the same caliber as the one that causes AIDS, and that very soon all our suffering and struggle will be validated and there will be a definitive, widely accepted and scientifically indisputable way to prove we are as sick as we have been saying all these years. People will take us seriously, we won't have to defend ourselves against doubt, Disability Insurance will be granted to those who need it without having to jump through years of bureaucratic hoops, and best of all, people will start to care, and research will move forward to find a solution for us to take back our lives, if not be cured. OR it could prove to be just another opportunistic infection, one more medication to take, one more hope dashed.

As for me, I'm not losing hope, but I'll not be taken advantage of again or have my hopes raised until they should be.

Friday, October 23, 2009

Sometimes I so want to go all Buffy the Vampire Slayer on CFS

That's how I felt today.
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.

I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.

Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.

That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...

Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "Uh...no...that's okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.

So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...

Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?

You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!

(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)

Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!

Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.

As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)

I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)

Saturday, October 3, 2009

Pace Yourself

Easier said than done right?

Well for me, this has been a huge issue lately. I guess I crashed a couple months back, kinda have to face it, now. It seems odd, because I never seemed to crash like most people with CFS & FM do. If I really pushed it, I might be out of commission for a a couple days, a few at most, and rarely. (Unless you count the 3 occasions when I crashed after going back to work for a few months.) This time, it seems endless, and I'm being faced with the fact that I'm NOT going back to normal anytime soon.

Monday, it took just a trip to the drugstore and browsing through their clearance items, and looking for a supplement to set me off into a downhill spiral. By the time I was on the way to my car, I was feeling woozy, seeing spots, sweating, heart was racing, out of breath, and I'd be willing to bet my blood pressure was plummeting. I rested for a couple of minutes, and unwisely talked myself into going to the next store. I ended up lying down in the car for about 30 minutes, went in, and barely made through the checkoutline before I broke into a sweat and collapsed into the car again. Tuesday I felt like hell. The next days were better; as long as I did next to nothing. Any activity (even getting dressed) left me breathless and weak with my heart racing and exhausted. My blood pressure was having trouble staying up, and the head rushes were getting so persistent that I started getting headaches.

Today, I was frustrated and a bit depressed, and finally decided, screw it. I'm just going to stay in bed all day! (After a brief sojourn on the living room recliner w/the laptop.) I was upset, but finally, after a good free-write and some soothing meditation music, I gave in. It felt good, and I ended up embracing it. I started thinking, hmm. Maybe this is what the doctors meant by resting...Two doctors have told me that. Take it easy. REST. I'm not good at resting though. I feel guilty when I rest. (I think I possibly feel guilty for being alive if I get nothing "useful" accomplished, but...)

Then I read this article titled Find Your Limits - How to Put the Push-Crash Cycle Behind You.
Just the title intrigued me, because I've often lately come to the realization that I don't KNOW how to pace myself, I can't get a handle on it, because I keep trying to be normal, but I HAVE no normal these days...

This article makes things far clearer though; it really makes a lot of sense. Apparently the author runs a website and has courses on pacing and dealing with Chronic Illness. They're not free of course; but if it can help me get a handle on things...maybe it's worth it.

Hmm. I had a realization. I feel kind of ridiculous doing nothing. I'm trying to get over it. Just to see. (Or maybe it's my way of saying SCREW YOU, I can't do what I want, so I'll do NOTHING!) It's occurred to me that maybe part of me doesn't believe I'm sick, because people around me don't seem to (and maybe that's the answer to all the questions I've been asking lately?).

Gene Responsible for Chronic Fatigue Syndrome Identified? highlights important research at University of Utah

Wow! I can't believe it...

MCS America article Gene Responsible for Chronic Fatigue Syndrome Identified highlights important research at University of Utah

Is this as good as it sounds?

Friday, October 2, 2009

What's a girl to do?

Lately, I have a gnawing suspicion that everyone is just tired of hearing about my health. In fact, I'd be willing to bet on it. I just don't understand what I'm supposed to do. It's my life. It's all there is. What can I do? Social networking sites have become my lifeline. That quote "I love my computer because my friends live in it"? Totally applies. But I worry even there I've become tiresome.
I have been really, really, REALLY sick the past...WOW: THREE months. One thing after another. My immune system is shot, adrenals are fatigued, can't fight infections well so they recurr...I've been all but housebound, and mostly bed or couch or recliner-bound. It was HARD at first, because what caused me to crash is that I had been getting back to normal. Driving to my hometown to see my friends and take care of business1-2x a week, exercising 2-3 times a week, getting stuff done in general...I was going to bed actually sleepy, and it was wonderful. So it took some adjusting to go back to being even worse than I had been. But then I got even sicker and I had no choice. Resistance was futile. I gave in to lying around, playing MMPOGs, watching lots of shows online, sleeping in, and Googling to my heart's content.

At one point though, I was having a really rough time. I asked my "friends" to come visit me, but they were too busy. I even practically begged my brother to come over for a day or so and just hang out. He didn't. I know I'm a bit needy. Hell, sometimes I feel like I'm on the verge of becoming a basket case. After awhile, mostly to protect myself from further disappointment, I gave up. But today, I texted a friend about something I saw on TV that I thought she'd want to know. She answered, asking me where I'd disappeared to, and I told her, I've just been home, sick. I'd start to get better, then get sicker. I have a suspicion that she's one of those people that is not good at sympathy, and she was sick of hearing about my being sick, which I expounded on at length after a drink too many a couple of times. (I've known her for 5 years, I figured it was safe.) And she despite my attempt to deflect my answer with a question about her, she never answered my text. I don't know why, but I can't bring myself to just lie, make up some bogus excuse...I'm not a good liar, and what's more, I don't like doing it. Besides, it's bad enough going through all this, but then being forced to put on a facade and lie about it? It's like it gives it all more power over me...saying everything is fine or making up some other lame excuse...it leaves a numbness behind, I feel empty, and if I'm really unlucky, it's like twisting a knife in my heart. It's not enough that my life feels like a living hell, but I'm supposed to help people who don't give enough of a damn about me to help, I'm supposed to make them feel better about that?
Not to mention, the last time I did it because I honestly just didn't want to get into it...I almost burst into tears. My eyes got teary as I mustered a tight, brave little smile and looked away to avoid eye contact. So seriously, what do I do? Nothing I guess. Just play more online games and try and keep it from eating me up inside. It's not working as well though, and I'm not sure how much longer I can take sitting around here, isolated. I've started having one-sided conversations with my cat and the TV. lol.

In other news, my hair is falling out at an increasingly alarming rate. Not only is it everywhere, but now all I have to do is run my fingers through the end of my hair, gently tugging on a few strands, and anywhere from 1-2 to a half dozen strands come gliding out I can do it again and again, and at least one piece comes out, and again, and again. Not even from my head, it seems like they've been lying there, tangled in the rest of my hair, waiting to come out. It seems like I'm falling apart, from my hair down to my toes. (Earlier this week I could not get my legs warm, had to put on thick socks and leg-warmers. My stomach has been acting up, my heart rhythm is too fast, blood pressure is low, memory is bad, and now the hair...)

I'm tired, and beginning to feel invisible, and wondering how much longer this is going to go on. But for now, my night meds kicked in, so I won't really care for awhile.