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
>
> Hi Christina,
>
> Again, welcome to the group (smile)! It was nice talking with you on IM earlier today! Its great being able to email and talk on IM even on the phone with others here in the group. This group is a tight knit family who enjoy making friends as well as giving support to each other! We can all learn more by making friends with others in different situations than ourselves.
>
> We both had brain surgeries for different reasons, we both have had complex partials in our lives. Hey Christina, would you mind swapping brains? I wish my brain ran as well as yours (big smile)!!! We both are missing pieces of our brains but gosh, wish mine ran as well as yours! I can barely use computers and you can take apart computers and put them back together (giant smile)! Again, welcome to the group, it was nice chatting with you before. Take care, keep a smile on your face!
>
> Steve
>
>
>
>
>
>
> --- 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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