Looks like this is as good as its gonna get.....

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Michael - 05 Apr 2008 05:11 GMT

Well, the being so tired all the time is for a reason. We all know
that with Lupus, FM and most of these other autoimmune disorders being
really, really tired is the common denominator. I've also got
Vasculitis (inflammation of the vascular system), Avascular Necrosis
(bones die from lack of circulation), Osteoporosis, and some other
things that seem to be going wrong too.

But being tired from these illness's is nothing compared to the
feelings of fatigue I get from this pain pump they installed about a
year and a half ago. The put dillaudid in that then I have to take
60mg of Morphine 4 times a day. I'm just sleepy all the time I guess.
I keep nodding off, usually in the middle of things. I'm also on
oxygen all the time now. I don't remember where I left off last time.

I'm supposed to be on Coumaden for these treatments I've been on since
the first of the year. They put me to sleep and inject numbing
medicine into the areas on each side of my spine where the nerves are
that go to my feet. This helps with the pain from the nerve damage in
my feet as well as where the ankle bone and my leg bone meet....that
joint is completely gone and they tell me there is nothing they can
give me for bone pain, it's the hardest pain and next to impossible to
treat. So I can't walk anymore without a cane. I'm supposed to be
fitted out for a wheel chair but I can't see how that's gonna work
here where I live. I'm not going to get any better. They just give me
medicine to help make me more comfortable.

So there's my sad little story. There's no way I can help but be tired
with all the Morphine I'm taking. And, of course, there are lots of
other side effects too. I just feel kind of crappy all the time. I
don't get out much anymore because of the foot pain so I get pretty
lonesome too. I just bought a new laptop and I'm learning Microsoft
VISTA and that's been quite a challenge.

Mugsey's just doing fine. I don't think I could survive without her
for even one day. Overall I'm really doing great buy some days I get
to feeling a little empty and I don't have energy for anything else.

So there's my deal! I'm still doing pretty good overall. other than
the pain and fatigue. I've written my limit and will write more
another time. Please forgive the spelling errors. It's never been my
strong suite.

Michael

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Michael - 05 Apr 2008 14:08 GMT

> Well, the being so tired all the time is for a reason. We all know
> that with Lupus, FM and most of these other autoimmune disorders being
[quoted text clipped - 39 lines]
>
> Michael

I goofed in the previouse post. I'm supposed to be on Coumaden but
have had to go off it for these treatments I've been having (Bilateral
Sympathetic Nerve Blocks).The medicine I should be taking is called
Arixtra (can't take Lovenox anymore due to a bad reaction to Heperin)
but the Arixtra injections are something like $135.00 a day and I
can't afford them. I've always had the ability to make some extra
bucks on the side but I'm living only on my SS disability check now
and I'm not able to pay my bills on that much less another $1,500 a
month for the Arixtra (after insurance pays). Last year I qualified
for the pt assistance program for Arixtra but not this year.

So I'm having these treatments for 12 weeks "Complex Regional Pain
Syndrome" without the protection of Coumaden for my Anticardiolipid
Syndrome (causes Pulmonary Embolisms in my case). I had 6 or 7 major
PE episodes in 2001 before they got me theraputic on Coumaden. I'm
considered to be a "lifetime Coumaden user." The reason I'm telling
all this is that he stress from "flying without a net" without my
Coumaden is huge. All my illness's are exacerbated by stress. And I'm
having a lot uf stress right now so, as a result, lot's of
inflamation.

I went blind in my right eye last August due to, basically theey
think, a blood clot in my eye. 3 months later. They put me back on
Cytoxan (which I can no longer afford) and did surgery on my eye.
Because I'm a high-risk pt due to all my illness's, they had to so the
eye surgery while I was awake. Let me tell you, when omeone sticks a
sharp object into your eye it feels just lke someone stiking a sharp
object in my eye. I did get 80% of my sight back tho so it was worth
it but that 30 minute eye surgery felt like it lasted for days! Ouch!

Can you imagine how hard these posts are to write considering I keep
falling asleep afer 4 or 5 sentences and, usually, nod off with my
elbow or something on the keyboard. I wake up to 6 pages filled with
the letter "x" or something. It's a challenge, I'll tell you! That's
why my writing seems chopped up sometimes and I usually end up
omitting "part of the story."

Love and good wishes to all!

Michael

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