For the Better Part of a Decade... Posted: 10-14-04 22:21pm
I believe that I contracted lupus while in
the navy. Since that time my life has
been very hard. I find a job, then
inevitably I lose it because my body
betrays me. I lose everything that i've
worked for, i.E. Cars, apartment, and
material things that I aquired that would
fetch a price. After a few months of
recovery, I find a job and the cycle
begins again. After a few cycles, I began
turn away from my faith. I begin having
secondary symptoms, shogrens, raynods,
hair loss and fibroidmyalgia. Just
recently i've lost my hair. Now I look
like a g.I. Jane knockoff. To compound
the loss, i've now developed chronic
fibroidmyalgia in both my legs. I have to
take heavy pain killers to attempt to
sleep. Attempting a day at work is a
joke. The last time that I felt this
powerless, I slit my wrists. Not because
I wanted to die, but because I wanted to
control my body. Not it me. Even if it
were just for a moment. Even with the
effexor i'm taking along with the
painkillers, i'm just hanging on. I keep
thinking that my family needs me. Even if
i'm almost useless. I'm just......I am.
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Heathergirl
Active User, Really EHEALTHy
Joined: 11 Oct 2004 Posts: 719 Location: Michigan
Posted: 10-17-04 00:10am
I'm really sorry............If you need to
talk to someone...I can give you my moms
info...She is really good with helping
people with lupus learn ways to get
through their rough times.........
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InvisablePrison
New User, Becoming EHEALTHy
Joined: 14 Oct 2004 Posts: 5 Location: Denver, CO
Just Another Day Posted: 10-19-04 22:34pm
Thank you heathergirl, you seem very
sweet. The pain is the what I have the
most problem with right now. Have your
ever felt pain that you could not hold
your composure? You just have to scream,
even men have too. Then you push past
that, to the point where you lose
conscience, then, even past that, you just
surrender. This is the precipce at which
I stand. I wake up and know that the
first movement of my body will be painful.
The last movement I make will be painful.
The fatigue causes me to tremble, and
have baisular migrains. I hate this!!!
This lupus/fibroidmyalgia is stealing a
piece of my life everyday!! How do you
fight an enemy that is you?? I once slit
my wrists, not to end my life to to
control something, anything. What so you
do? How can you win? I begged, and
bargained with god. I pounded my legs so
that the pain I feel is because I wanted
it. I don't want to eat because i'm tired
of being fat! And then, i'm back to just
another day, wondering how I can fight
what I can't see. How can I fight me.
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mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Better Part of a Decade Posted: 10-24-04 23:26pm
I understand what it is like to wonder
exactly how much pain you are going to be
in. How it is going to affect your job,
your marriage, your friendships and any
sense of joy you once experienced from
life.
I no longer make plans in advance with
friends, because I never know how i'm
going to feel on a particular day. I
can't go swimming in my own pool, because
I can't go out in the sun without getting
a migraine, shakes and exteme fatigue.
Because people don't understand what it is
like to live with pain and limitations.
Who wants to tell people all the time,
they don't really want to hear about it.
This year alone I had a migraine for 6
months straight! Then, with an increase
in anti-seizure medication, I didn't have
one every day but it was still way too
many. I was wearing hats and sunglasses
inside! Then there is the lupus,
fibromyalgia, oa, sjrogens, raynauds and
my last flare sent my thyroid zooming
into overdrive.
Whenever I have a flare, I get very crazy
from the pain and migrains and find it
very difficult to maintain a regular work
schedule. I'm a hairdresser and my
salary is completly commission, so when I
can't work many hours or run my customers
off by not keeping up or being crazy, I
don't make enough money. So I
understand, but I have to try and keep
working to pay for health insurance which
is $391 a month with a $2,500 deductible,
but as you know that is 2 rheumatologist
visits!
The one thing that has totally saved my
life and my mind is my pain management
specialist. He is a psychiatrist who
deals with how the brain processes pain
and the bodies responds to it. For me,
he uses several different anti-seizure
medications that have helped control my
pain and migrains to a great degree. I
also take an anti-depressant that is known
to have pain relieving properties. I
know this type of doctor is very difficult
to find, a lot of pain specialist are just
anesthesialigist that give injections.
But if you can find someone like my dr, it
can change your life.
