Christina,
Welcome to our group.
Wow do you have a lot on your plate! I'm going to have to look up quite a few of those words -- although I just retired as a home health aid for 25 years.
Do you live alone and have 24 hr care? What kind of a computer do you have if you are in bed all the time?.
Stay with us and you will find that there are a lot of people here. I was DX with EP 47 years ago when I had 3 daughters 2, 4 and 6. They are all in their 50's or very near now.
Millie
----- Original Message -----
From: christina
To: epilepsy@yahoogroup
Sent: Sunday, November 22, 2009 12:57 PM
Subject: [epilepsy] new to group
Hello, i am new to the group. I thought I would
introduce myself a little better. I had a brain
tumor in 1997-a craniopharingioma. I had chemo,
radiation, and surgery for the tumor. The tumor
is gone and has not come back.
Then in 1998, I was walking to class and was hit
by a truck. I suffered a traumatic brain injury
and a spinal cord injury. it was at this time
that my epilepsy started. I have both grand mal
and complex partial seizures. From the same
accident I had a hemorrhagic stroke and many
broken bones and neurological damages. I
developed central pain.
IN 1999, I was diagnosed with diabetes and
chronic fatigue/Fibromyalgi
In 2000-I got a serious infection my leg and
developed RSD-Reflexive sympathetic dystrophy
(also called complex regional pain syndrome
today).
In 2004 or 2005 I developped Arachnoiditis.
I was also diagnosed with Gastroparesis,
dysphagia, Gerd, Esophageal Dsymotility,
duodenal ulcer. I was put on a PICC line and
TPN (nutrition through your veins). I then
went to a feeding tube. I still have the
feeding tube for meds and supplements and for
water in case I get sick when vomiting is bad,
but I am eating enough to sustain.
IN 2004 had 4 episodes of kidney stones (may
have been linked to use of topamax.
2006 Had gallstones and gallbladder was taken
out.
2009, Officially got diagnosed with pemphigus
although I had it for years with no diagnosis.
It is an autoimmune disease that attacks the
skin. It causes huge widespread blistering
and the blisters open up easily and there is
raw areas that we have to watch for infection
risk. Plus I am on prednisone and Cellcept
(usually used to prevent organ rejection by
stopping immune system) that puts immune
system in low gear. I have to very careful
about getting sick!
As for seizures go. I have had 30 this year.
that is the ones my non-observant nurses have
noticed. They go outside for an hour at a
time sometimes to smoke and talk on the phone.
While I lay in here alone. I am bed-bound
for the most part due to my disabilities.
And the little seizures like face twitching
and arm shaking, lips smacking, they NEVER
catch those! My friends do, but my nurses
are clueless. Okay off my soapbox!
I am wanting some friends I can e-mail back
and forth with. And meet new people. If
there are people with multiple conditions
let me know how you handle everything.
Hope to hear from you soon.
NurseGJTubee
christina in tn
[Non-text portions of this message have been removed]
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