Christina,
Do you have RNs taking care of you-- or home health aids? I just retired from
25 years of being a home health aid.
I don't remember what I wrote to you so if I repeat-- I guess I repeat.
I had my first sz when I was carrying my 2nd daughter and my 3rd when I was
carrying my 3rd daughter. The Dr. thought pregnancy and me didn't go together
so I had my tubes tied. We thought that would be the end of my szs-- but when
my 3rd .daughter was 2 -- I had another sz and that took me 30 miles away to the
nearest EEG machine at that time. After that I was told that I have EP, I couldn't drive
for a year and I would be on meds the rest of my life. That was 47 years ago. I then
had 3 daughters 2,4, and 6 plus and a husband (now ex)
I grew up in a home where we didn't even have aspirin in the house and I don't recall
ever going to a doctor. My mother died when I was 11 . I was the oldest of 4 children. I think
because of mother being sick a lot Daddy got interested in organic farming. He farmed our
whole 40 farm acre organically. I guess he was about 50 years ahead of his time. Then it
was odd. Now it is accepted.
Because of this I really had to change my thinking about meds. I have never had a lot of szs.
When I was married I had migraine headaches every 2 weeks -- but they were never connected
to my szs. I've been divorced for over 30 years and I haven't had a headache for over 30 years.
2 of my girls and I think the migraines were from the pressures of the marriage. The other one
thinks that they quit with menopause.
I've been thru a few meds-- don't remember all of them -- Peganone, valium are 2 I remember. I
was depressed especially during Jan and Feb. Then I decided those months were not for me.
I have been on Dilantin and Phenabarb for over 20 years. I am fairly well controlled. My last sz
was 2 years ago and before that it was 4 years.
At first I had grand mals -- but about 15 years ago they changed to more like complex partials.
My girls say my brain is scrambled for about 2 days. Then like you turn on a light my brain starts
working again.
What kind of a computer do you use since you are in bed most of the time? What do you do in
bed? Do you have any hobbies? Do you watch TV? Tell us what you do with your time.
I've had my computer for about 15 years-- and love it.
Millie
----- Original Message -----
From: christina
To: epilepsy@yahoogroup
Sent: Monday, November 23, 2009 9:54 AM
Subject: [epilepsy] Re: new to group
steve and group,
i am not sure you want my brain either.
i only functions part of te time and
not when I need it to :-) Good to
chat with you!
Everyone I am still waiting to meet
you also! Feel free to post to me or
e-mail me! I have grand mal (rarely)
and complex partial seizures. I am
on Topamax, Neurontin, and Lyrica
right now. My doctor is going to
discontinue the lyrica due to side
effects and add Keppra on Wednesday.
I hope the Keppra doesn't have side
effects. Does anyone take Keppra?
Any side effects from it?
so all you on this group answer this
post and let me know you re here. :-)
I belong to a local Traumatic brain
injury and epilepsy support group that
meets once a month in this town, but
sometimes i don't get to go because
my 24/7 private duty nurses will not
let me because it is at shift change.
They could shift change at the hospital.
This is not fair!!
Anyways, enough of my stressful
environment at home. Everyone meet me
and tell me about yourself and how you
are doing. Please tell me what group
you are from when e-mailing me as I
belong to several other groups.
thanks,
NurseGJTubee
christina in tn
---> --- In epilepsy@yahoogroup
> >
> > 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
> >
>
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