sRazz

I've been reading these boards (lurking) for a couple years now, but have never been able to bring myself to post.

Everytime I read the threads here, I just cry. Oh my God, at LAST! Someone else - many someone elses who understand what I've been living with! And then ... oh my God .. these poor people .. they're dealing with this nightmare too!

My story is a familiar one. Other than the fact unlike most with this cursed disease (and yes, I'm calling it a disease no matter what they say. It's bad enough they saddled us with names that sound preposterous (fibromyalgia) or as if we're just lazy bums (Chronic Fatigue - with the Immune Deficiency Syndrome part typically left off to boot!), I'm male. A Forty one year old male who's been living this hell for five years now.

Most of the rest, you've heard before. Different names, different places, varying severity, same old story. I was working construction, doing concrete work, building bridges. Prime of my life, just graduated from college with a degree in Business Management and Computer Information Systems. I took a temporary job in my old field while waiting for my wife to finish up her degree, had applied to join the Peace Corps, save the world, make a difference, be a hero, do something worthwhile with my life, insert your own cliche here.

Then I got sick. Seemed like a really bad case of the flu. I was puking for days. I lost my job. Got a little better, got sick again, got a little (less) better, got sick again and again, and again. Down and down I spiraled. No insurance, no job, couldn't afford to go to a doctor, figured I'd get better soon. I didn't. Thought maybe it was West Nile Virus. The only other things that matched the symptoms were something called 'chronic fatigue' - oh please. What the hell is that? Some made up psychobabble for welfare queens? (oh, would I EVER come to regret that initial reaction!). Or maybe Fibromyalgia. Again, what the hell is that? Sounds like something those UFO kooks came up with. Alien saucers are spreading contrails filled with really scary stuff that makes us sick!

Getting worse and worse. My knees buckle with no warning and send me tumbling on my face. I'll fall down and can't get up. (Yeah, even in the pain in frustration lying in my driveway, I think of the old lady in that commercial too! Wish I had one of those things to call for help.) The pain never goes away. Gobbling tylenol like candy. I'm cold - always cold. ALWAYS cold. other people can't stand to be in the house cause I have the furnace turned up on high, but I'm cold.

And even the smallest everyday tasks leave me wiped out. Emptying the garbage knocks me on my *** for several days. My head feels like it's stuffed with cotton balls. I forget how to do basic math - or I can't concentrate enough to do it, anyway. Programming and web design become something I studied once, because I can't focus enough to do it anymore. My memory goes .. it's getting REAL scary when I can't remember my brother's name.

My wife becomes more and more distant, my friends disappear, my family stick their nose in the air and sniff like they're rich snobs smelling something nasty. "It's all in your head!" "You're just being lazy!" "You must have depression!" Is there a Greek Chorus singing these lines? Oh, how i've come to hate them!

Finally find a clinic with a charity care program, (HOPE AT LAST!) get in to see the doctor. Bring pages of notes listing my symptoms and the chronology. Doctor ignores most of it. Diagnoses me as hypothyroid. Puts me on synthroid. I start to get better (HOPE AT LAST!) - at least I'm not falling on my face anymore. But then .. that's it. I'm still cold. I still hurt. My head is still in a fog. I still can't do normal things. (Boy, would I redefine 'normal' as the years went by!)

More doctor visits, more tests. They took enough blood to keep a city of vampires alive. MRIs, catscans - even with the charity care discount and my wife finally getting insurance through work, the medical bills are crippling. the doctor says "maybe you have chronic fatigue" - still sounds bogus to me, but at this point I'm grasping at straws. But the official diagnosis is still hypothyroidism.

The doctor gives up. I give up. They send me to Voc rehab. They want to help me find a job. Are you friggen kidding me?!? i can't mow the lawn! How the hell am I going to get a job???? "It's all in your head!" "You're just being lazy!" "You must have depression!" "Here, have some prozac! it won't help, but you'll be drugged out of your mind so you won't know it's not helping!!!"

I turn to the internet and start reading. I now have a notebook full of charting my symptoms. It's got to be CFIDS or fibromyalgia. Can i possibly have both? AND hypothyroidism TOO? That's crazy. I was a healthy man in the prime of my life. What could cause something like this? More reseacrh.

And more. And more. I'm finally convinced. These diseases - THIS disease - is real. And I have it. I talk to a friend in mexico. He says his buddy is a 'doctor' and they CURE this stuff down there. (HOPE AT LAST!) He sends me some literature. So, I turn to herbals. I order some Rhodiola Rosea. It helps. it helps a LOT. (HOPE AT LAST!) Maybe I'll get better now .... nope. I'm starting to learn that 'better' is a relative word. Just like 'normal'.

My marriage is a disaster. my freinds are long gone. Those few members of my family that still speak to me - i don't want to speak to them. "Hi, how was your day?" "I don't remember. What day IS it? I spent the last week in a fog. I wake up, drag myself out of bed, and just try to survive the day .. and the next a.. and the next .. waiting for those periods of my new normal when i can function enough to research this thing.

Life is a blur of pain and misery. With background music! "It's all in your head!" "You're just being lazy!" "You must have depression!" I HATE that chorus, I hate people. Heartless bastards. Why did I ever want to help save the world again? I hope they burn in hell. No .. worse - I hope they have to suffer through THIS!

The few times i'm able to go out socially - the rare times. I meet people, and the first question is always "what do you do for a living?" I haven't worked in three years because I'm sick. Cold shoulder. I never realised how much society defines us by our JOB. I'm not lazy. I'm sick, damnit. Heartless bastards.

Still, I am 'better' than I was. The rhodiola helped. What else is out there? I've already been plowing through the nightmare of researching CFIDS/Fibro/Hypo .. the scoffers, the conflicting information, the utter ignorance of the issue by the medical profession. "It's all in your head!" "You're just being lazy!" "You must have depression!" "Here, have some prozac! it won't help, but you'll be drugged out of your mind so you won't know it's not helping!!!" Now i begin wading through the hyperbole of the herbal industry.

Screw that. I'll suffer this forever before I take that ****. Back to the herbal research. I start reading Teitelbaum's articles. (HOPE AT LAST!) I wonder if I can find a way to go to Maryland? I find Doctor John Lowe's website. I order his books through the University. They can't find them. no, wait, they can. They'll have to order them from England or Australia or somewhere. Are you kidding me? No library in the United States has these books???

I get the books. One is the size of a volkswagen. this thing is written for doctors. I'm a smart man - or at least, I used to be back when my brain functioned - but i don't understand half this stuff. Ok, three quarters. But i persevere (PERSEVERE!). I renew them again and again. I finally get the gist of it. Hypothyroidism? Fibro? CFIDS? It's all one disease. One, undertreated disease. The rest of the world outside the US and UK CURES people of this. (HOPE AT LAST!) The treatment is mostly herbal remedies. I go back to my doctor. I take the book. She ups my dose of synthroid. Ignores my symptoms, ignores the book. "You should be better. Are you depressed? I can prescribe some Prozac or Ritalin?"

I begin experimenting with herbal supplements. one by one. Took this for a month. It helped a bit. (My adrenals were messed up? Wow. Who knew? I start to get my temper flare-ups under control. It lessens the post-exertion crash.) Tried that one. Didn't seem to help. Tried another. It helped a bit. At this rate it'll be another two years before i figure out what helps and what doesn't.

I do more research. I order a whole slew of herbals. I dump the synthroid, and switch to dessicated thyroid. I get better. (HOPE AT LAST!) I crawl up out of the fog to see what's happening in the world around me. My wife has become an alcoholic. We nearly divorced. My brother's in prison for a probation violation - he had a DUI awhile back and they found an empty beer can in the back of his truck. He gets more prison time for an empty beer can than most murderers. My other brother is in Iraq for the third time. He's changed. Reminds me now of my dad and other Viet Nam vets. Lovely.

But i soldier on. I save my marriage (I think). I keep getting better,(HOPE AT LAST!) slowly. Dr. Lowe's book said it would take from 6 months to 2 years to get BETTER. Healthy better, not just 'less like crap' better. i ignore the last half and decide I'll be cured in 6 months. As long as I remember to take my 'meds' and remember to reorder when i run out, i keep improving. i forget to order my 'meds' and i crash again ...invariably it takes a couple weeks before i can get myself together enough to place the order.

I ride this rollercoaster for 6 months. But at least this time the rollercoaster is getting higher each time instead of lower (HOPE AT LAST!). Then i seem to hit a plateau. i just can't climb any higher. The lows aren't as low, the highs are almost halfway normal. I'm able to start puttering around the house. I start doing some limited web design and coding. (HOPE AT LAST!). But .. i've stalled. I'm frustrated. "It's all in your head!" "You're just being lazy!" "You must have depression!"

FRUSTRATED. It's not a mental illness damnit! I'm not some looney. I'm sick. i'm tired. I despise the medical profession. I despise people. I'm frustrated and bitter. is that depressing? yes. But it's not DEPRESSION.

For the first time in years I'm able to travel. My wife has some job interviews in montana. I dread the trip. We visit my family. I'm able to drive for a few hours at a time. I pop 3 times as much rhodiola as usual. The trip doesn't kill me. I'm tired and worn out, but I don't drop into a hole for a month. I'm excited! (HOPE AT LAST!) i wonder if it's the water here at home keeping me sick? maybe there IS something to that fluoride business. We have it in the water here. They don't where my brother lives. We were there a week and I was 'better.' We come home and i get worse again.

My brother wants me to start a business with him. It sounds like an amazing opportunity. Low entry costs, we can test the waters a bit, I can work part time until i'm better. I can do the website and the marketing and management, while he does the physical labor. My wife gets a job offer at the school in the town where he lives. Same pay as she makes here, but for nine months instead of twelve. The business seems really promising the more research I do. A new start in a new town, with family close by for support. I'm excited. Very excited. Very, very excited.(HOPE AT LAST!)

Now the worries. How will we move? I still can't do all that much. Just a bit each day. We'll need help. My wife makes the mistake of mentioning the new job offer at her current job. She's excited. She's nervous. Bad move. Suddenly she's blackballed. Tension at work. Worries about how we're going to move. Worries about how we'll pay for it. Worse, I forgot to reorder my meds and drop off the world for two weeks. I come crawling up out of the fog and ... she drops a bombshell on me.

Divorce. I don't help enough. I don't have a job. I forgot our anniversary (I didn't even know what day of the damned week it was, much less that it was our anniversary.) I'm just using her for her money. (Say what? that doesn't sound like her.) She's afraid I'm going to hurt her. (Say WHAT???? I've never laid a hand on her or any other woman in my life!) She's staying with a friend. The divorcee who's ex-husband was a drunken bum that beat the hell out of her. Oh. I see where that off-the-wall **** came from. Why do divorced women seem to dedicate their entire lives to some sort of crusade to have all their married friends get divorced? Projecting their failures onto other people's relationships?

So much for f****** HOPE AT LAST!
Nowhere to turn. After 5 years of hell, I finally thought I saw the light at the end of the tunnel. I thought I might finally get some semblance of a life back. Now I'm more alone than ever. Probably get thrown out in the street today. No car. No money. Can't get a job if i tried.

I come here. I read these boards. I cry. people who understand the hell of this disease. I have no idea what to do anymore. Nobody to talk to. But i have to unload somewhere. thanks for listening. I really am going to cry now. Gonna be one of those heart wrenching, cry til your stomach hurst cries.