Re: Ouch, fibro flare up and today I just got broad-sided by a five year
old girl  

Group: alt.support.hepatitis-c Date: Sun, Mar 6, 2005, 9:38pm (CST+6)
From: illume1@verizon.net (davon96720)
In '97 I was going for my MS in Space Studies in North Dakota, after
nailing some 300 credit at UH Hilo. In April I toured the Russian space
program, 3 weeks around Moscow, Star City, factories, research
facilities and museums; then 4 days at the Baikonur Cosmodrome in
Kasakstan. The trip back: day 1 left Kasackstan, day 2 left Moscow, day
3 left Amsterdam and land landed in Minneapolis, custums agent said if I
was going to Grand Forks ND, that I was in trouble; out in the lobby on
tv was Grand Forks, under water and on fire, day 4 NW air gave me an
emergency flight in the 48 states, so I ended up in my old home town in
PA, where my long term girl freind was, and family. Got the proverbial
15 min. of fame on the front page and tv. my brother decided I should
have gone on to ND, 25% of the population was dislocated and you don't
go into that. So he tossed me out into my Sister. She had alot of old
ex-drugee freinds, and a grandson with constant flow of teens through
the house. I kept tossing out toothbrushes after finding them wet, but I
guess I missed one, although not a usual vector not an impossible one.
I got back to Grand Forks at the end of August and first day there I
woke up and had my first memory glitch. I looked in the mirror and my
mustache was gone, I always sported at least that if not a full beard.
Wrote it off to travel fatigue. But back on campus I make an appoint
with the student clinic, the first of many. I short term memory went on
me, I got chronically fatigued and developed sleep disorder where I
could'nt sleep for 5 days at a stretch, even with meds. By Oct. blood
work showed some viral activity and I got told you'll be ok in a few
weeks. In Nov. blood work showed high titrations of epstein-barre and
again was told you'll be better in a couple weeks.
All through it I kept insisting that something was eating at my liver,
but got written off having post-viral depression. From a g.p.a. of 3.75,
I turned a 1.9 for the fall. The spring term came around and I felt
worse yet. I went to a class one day and furiously wrote down three
green boards of lecture notes, kicked back and looked. I had written
them down once, and then forgot and wrote them down again. That was an
epiphany, I knew I was done acedemically. I ended up with a gpa of 2.97
and needed a 3.0, so missed my MS by 0.03. My girl freind wan't me to
come back to PA but I couldn't face having to live with that part of my
family again. I had old freind in Eugene OR that had a second house on
their property and they said come up and do another garden for us.
They're great people, tolerated for the two years I was there. My old
girl freind wanted kids, got engaged (I guess at first to get me
jealous), but still wanted me to come back. I didn't know at that time
what was nailing me, but that I didn't have much of a future and worse
maybe I had something that I could give her and I let her slide by,
which I think was the hardest thing I've ever done.
Eventually, I got back to Hawaii. It took some time to get into the
system. I knew I needed medical care, so I applied for state assistance.
The first step was to see a state doctor to screen people out, I walked
up there that day in agony with some fibro flare in my back and fatigue,
having to stop every block to rest. That idiot doctor said there was
nothing wrong with me physically and said it was all in my head and had
me see the state's psychologist. That guy had some compansion, and
recognized something was really wrong and got on the system. So I got to
see my old doctor finally.
Four years every doctor had kept telling me I was depressed and wrote
out anti-depressents after looking at my charts and seeing what the
first doctor had written-"post viral depression", during that whole time
I kept insisting something eating at my liver. Dr. Bade, who goes back
to the old plantation days as a plantation doctor, actually listened.
After a year of tests he caught my liver enzymes were off, next time I
came in he asked me "did you ever hear about hepatitis-c".
It took a year to get onto the newer peg-interferon/ribavin therapy. I
got every damn side affect, didn't know it had a fifty % attrition rate.
Several times my blood counts were seriously low. Half way through I
couldn't take it and took two weeks off. Dr. Bade started me on Marinol
and got me a medical canabis permit, and I made it through. A year
later, I'm virus free. One of the weirdess things that happened was a
thing called "corruption of taste (and smell), like it's hard enough to
eat while on chemo, without everything tasting or smelling like some
alien off-world kaa kaa. But, if it hadn't been for medijuana, I don't
think I would have made it through the therapy.
Anyway, still have a few reminders of it: nueropathy, my left left has a
dead nerve cord and some muscle atrophied ( explains my broken foot in
2000), got fibromyalgia with spastic muscle and cramps, psuedo-mentia
with short term memory loss and some visual agnosia, I take aricept an
alheimers memory drug that has helped, it also gets "better over time".
I quit the anti-depressants and my libido back. I've lost most of my
teeth over this period. However, I can't do an eight hour day, let alone
take care of my 87 yr. old mother besides. I keep coming up with things
I can do on my own. However, I keep getting hamstrung. SSI isn't any
problem, they want me to work, it's the state, I can't verify my own
hourly income, my income has to be independently verified i.e. as Karl
Marx would say "the surplus value of my labor become the profit for the
corporations". Even though I turn in all records when I earned anything,
I could be arrested for fraud.
F.E.M.A. gave me one month rent, all they could do being out of ND. The
new welfare, nada if you're able bodied. Having been all over the media
and with kids working summer jobs, no one would hire me. I asked if I
could get emergency rent money and write a note to pay it back, but no
way. So for lack of maybe 400 bucks during a natural disaster, I've lost
it all, again. The government has had to pick up about a 400 grand tab
that includes my student loans, between SSI, meds and tests thats
another 3500 and sometimes more per month. So I found out that the new
welfare system pinchs pennies and pays outs thousands as a consequence,
and keeps you from working.
So for the long haul, I'm going to get gardening out on the lots, and
grow my own medicine. Once off the state, I'll quit a bit more freedom
to work as I can. I'd like to put together a hostel with camping and
huts with an orchid theme to the place. My goal is to be self-sufficient
and tell the state to shove it. I'm tired of being told I should be
grateful when it all could have been prevented.
My case is an exteme situation; but, it shows what can happen.
That's the long and short of it.
Aloha,
dave
I'm one the people who fell through the hole of the new welfare system
started in 95.
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