Monday, December 29, 2003

I finally got my SSI paperwork filled out after procrastinating for a month. It was a pain in the @#*, aside from the beurocratic bull, it was a blow to my pride to admit that I can't work like I used to. Why, after a critical illness that would knock anyone on thier butt, is it so hard to say "I need help"? I don't know....

Sunday, December 28, 2003

Jethro, a friend of mine that I met online at the GBS Foundation forums has been very active in the effort to correct faulty GBS statistics. He posted a poll on the forums asking what is the suspected cause of your case of GBS. After polling 100 members with GBS currently taking part in the GBS forums, he found that statistics relating to causes of GBS published by the CDC are flawed. he has since written a letter to the CDC asking them to correct the published information.

Thursday, December 25, 2003

I have found a GREAT resource for finding a neurologist. The American Academy of Neurology has a website that has an international registry of neurologists.

I will be forming a new class of links on the left side of the site called Neurology/GBS resources, and I will put a permanent link there. If anyone knows of any other good resources re: pain control, GBS support, Neurology, etc... please use the contact us link, or the shout out link and either leave a comment or E-mail me with the info.
One stupid pair of boots.... Isn't it crazy that one pair of boots can represent everything I'm not able to do anymore. I bought a pair of steel toed boots last December to wear when I was driving truck, I loved those boots, they were steel toe, chemical resistant so that if I spilled diesel on them they wouldn't be ruined.

I tried those boots on today, they didn't fit when I tried to wear them with my braces. Nothing from my old life fits anymore. The simple solution is to go by another pair thats one size wider or bigger. I don't want to though, these boots were the ones I drove truck in, I don't want another pair. I want to wear those, I want to drive truck again, I WANT MY LIFE BACK!!!.

Wednesday, December 24, 2003

It looks like... they are trying some new "post acute phase" treatments for motor weakness in GBS patients. I along with others in the GBS community will be waiting for the results!!

On a personal note, Merry Christmas everyone. This will be the last post until after Christmas. Well okay maybe not.

Monday, December 22, 2003

Pain control.... Although I haven't had as good luck with gabepentin as the participants in this study, it has definitely helped with the nerve induced pain that I have suffered with. In my case as well as the cases of other GBS patients I have spoken with, there is musculoskeletal pain as well. I have been told that this pain is caused when the joints, used to not bearing weight and being stationary during the prolonged time on our backs paralyzed, readjust to moving and bearing our full body weight again.

Gabapentin is a safer, non narcotic, non habit forming alternative to many I.V. pain killers used in the hospital, as well as their oral form, which are often prescribed after discharge. Obviously this is only used in the case of neurogenic pain, and would not be used in the case of say, a broken leg.

For those of you with GBS if you are not already trying Gabepentin (Neurontin), I strongly suggest talking with either your neurologist, or your primary care doctor about trying it.
I have posted a poll over on the GBS Foundation discussion boards asking whether or not there may be an environmental component to contracting GBS, (eg. Lead, asbestos, other hard minerals, chemical warfare, etc...). It will be interesting to see the results. Of course any evidence would be circumstantial, but maybe if there is enough circumstantial evidence it will prove to be an avenue of research worth pursuing.

Sunday, December 21, 2003

The fear is always there, I shudder at the thought of getting "it" again.
Birthdays and anniversarys... Happy birthday to me, it's amazing how GBS or rather bieng critically ill with GBS permeates everything, even my birthday. I woke up this morning thinking "wow, I almost didn't make it to see 29". Just one day without this invading everything would be nice, but then I guess it wouldn't be a life altering illness.

I'm still resisting taking my pain meds, I really don't want to get hooked on them, but I guess if the pain is going to be a long term issue, as my doctors suggest, then I shouldn't really worry about it. My PCP has said the main concern is getting me on something that works and wont do damage in the long run to other organs.

What about euthenasia, I, for a long time have wished someone had considered my quality of life after the acute illness. Don't misunderstand, things have turned out better than any of the doctors expected, and I'm glad to still be here. Glad to still be here to see my young nephews open christmas presents, glad to still be here to enjoy the leaves changing, to be here to enjoy the first snowfall of the year, and to enjoy the little things in life like phonecalls from friends. There was a time though where I wanted the vent shut off, I was in shock over what was happening to me, for that matter I wasn't really sure what had happened to me. I have some serious moral objections to euthanasia, I thought before all this that God should be the only one to decide when someone dies, and I still do. Bieng the one in the bed changes some things though.

I'm coming up on the first anniversary of the beggining of the acute phase of my GBS in a little over a month. I think it's going to be hard to deal with.

Saturday, December 20, 2003

Ahhhh.... An audible sigh of relief permeates the room, I finally figured out enough HTML to get my blog looking exactly like I want it... Well okay maybe not exactly like I want it, but I'm too tired, and my hands hurt too much to mess around with it anymore tonight.

Smallblock, a friend of mine that I met at GBS Foundation International on their discussion boards, has a great website called About GBS that I have linked to. Go check it out.
Please bear with me as I do a little remodeling....

Friday, December 19, 2003

Research.... In the arena of medical research, publicity is needed to get money. Marge has it exactly right, maybe we need to start exerting pressure on those who have a publicized history of this disease.

Thursday, December 18, 2003

Friends & Family..... I can't begin to tell you how important my friends and family have been to me through all of this, they hold me up when I am weak (sometimes literally), they encourage me to keep going when I think I can't (okay, they give me a swift kick in the a** and tell me to get going), and we celebrate my accomplishments, even the small ones!! Thanks to all of you, you know who you are.

Thursday, December 11, 2003

Finally getting help..... I have finally come to the realization that I cannot cope with all that has happened in the last year by myself. I have strugled with depression and anxiety since the first few days after bieng brought out of the coma.

This week started attending a support group for those suffering from depression after a traumatic illness/injury. It went well, I think it will help me look at what happened to me in a different light and maybe help me see how some of my feelings on the issue are flawed.

It is very hard for me to admit that I am having a hard time dealing with this because I have REALLY tried to put up a brave front with my family and friends.

Anyway lets hope this works!!!

Monday, December 08, 2003

Found this today on a great GBS site:

What causes Guillain-Barrè syndrome?

No one yet knows why Guillain-Barrè strikes some people and not others. Nor does anyone know exactly what sets the disease in motion.

What scientists do know is that the body's immune system begins to attack the body itself, causing what is known as an autoimmune disease. Usually the cells of the immune system attack only foreign material and invading organisms. In Guillain-Barrè syndrome, however, the immune system starts to destroy the myelin sheath that surrounds the axons of many peripheral nerves, or even the axons themselves (axons are long, thin extensions of the nerve cells; they carry nerve signals). The myelin sheath surrounding the axon speeds up the transmission of nerve signals and allows the transmission of signals over long distances.

In diseases in which the peripheral nerves' myelin sheaths are injured or degraded, the nerves cannot transmit signals efficiently. That is why the muscles begin to lose their ability to respond to the brain's commands, commands that must be carried through the nerve network. The brain also receives fewer sensory signals from the rest of the body, resulting in an inability to feel textures, heat, pain, and other sensations. Alternately, the brain may receive inappropriate signals that result in tingling, "crawling-skin," or painful sensations. Because the signals to and from the arms and legs must travel the longest distances they are most vulnerable to interruption. Therefore, muscle weakness and tingling sensations usually first appear in the hands and feet and progress upwards.

When Guillain-Barrè is preceded by a viral or bacterial infection, it is possible that the virus has changed the nature of cells in the nervous system so that the immune system treats them as foreign cells. It is also possible that the virus makes the immune system itself less discriminating about what cells it recognizes as its own, allowing some of the immune cells, such as certain kinds of lymphocytes and macrophages, to attack the myelin. Sensitized T lymphocytes cooperate with B lymphocytes to produce antibodies against components of the myelin sheath and may contribute to destruction of the myelin. Scientists are investigating these and other possibilities to find why the immune system goes awry in Guillain-Barrè syndrome and other autoimmune diseases. The cause and course of Guillain-Barrè syndrome is an active area of neurological investigation, incorporating the cooperative efforts of neurological scientists, immunologists, and virologists.


Sunday, December 07, 2003

I have been in and out of the hospital for the last two months, sorry again for the lack of posts, on the brighter side after a severe allergic reaction to pain meds I was taking we finally found something thats working. For those of you dealing with Gullain-barre I strongly suggest you have a primary care provider that understands this disease and is willing to work with you on your meds. Not just pain meds but all of them, it makes things so much easier.

I have actually progressed to the point where I was able to cook the Thanksgiving turkey, boy, who would have thought I would be able to pull that one off back in April when I was still on the vent unable to move!!!

On a sad note, my boss of four and a half years has put me on a "forced" leave of absence because "my disability is too much of a liability". That really hurts....

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