NeuroTalk Support Groups - View Single Post

theoneRogue420 · 05-16-2007, 03:18 AM

I appreciate all your kind comments and suggestions

fmichael, I am already on Marinol, 30 mgs p/day, per insurance orders (would be more, if dr.s got to do what they want to).They help quite a bit. I have to take my whole days supply at once to GET that effect, lol... but at least I can eat one great meal a day, and actually have a bit of fun at the same time. I use Boost to survive the rest of the time.

I have tried, and will NOT use again, Amitriptyline, Neurontin, Paxil and Tegretol. They screw with my serotonin levels way too much and I become rather psychotic. Everyone who knows me in "real life", lol, is amazed by what happens when I take them. They don't want to be around me, and I can't blame them... I don't like myself when I am on those meds either.

I guess I never explained the courses of treatment I have endured in the past 14 years. Back in those days, very few Dr.s had any idea what was wrong... quite a few still thought of rsd'ers as hypochondriacs.

I had ALL the blocks, every kind they could come up with. If I remember correctly, I had 16... four of each kind (I still have the toe twitch in my right big toe after 12 years, from the dr. hitting the sympathetic nerve ROOT.. dr. was impressed with himself, I was not.) I was one of the first to ever use Guanethidine, part of the gov't trial. I took the anti-convulsants, the anti-depressants, everything. As I am now an epileptic, I have to take 300 mg phenytoin every night.

I was sent to Texas Tech to see Dr. Gabor Racz, then considered the "leading expert"... he wanted to put in a spinal cord stimulator, but as I was paying for all my own treatment, that was impossible. He wanted to insert a morphine pump too, but I had two teenage sons to raise on my own, so I wouldn't allow it. (I'd do it in a heartbeat today, but medicaid won't pay for it or oxycontin unless you are a cancer patient. Yes, you all read that right. You can have them if you are dying of cancer, but you can't have them if you are dying of aids.)

Immunoglobulin therapy might help, I have no idea. But the side effects are too severe for the Dr.s to want to try them on me. The nausea and vomiting would be detrimental, to say the least. I weigh 90 lbs, and to lose even a few lbs from the side effects is a very bad idea.

So, basically, I am screwed. I have known that for a long time now, and am at peace with it. My relationship with God is a strong one, or I wouldn't be here today. I get my strength from Him and from Michael, who God gave to me in the first place lol.

My only quandary has been when and how it will all end. Long before I ever got injured or sick, it was well known to my family and friends that I firmly believe in euthanasia for people as well as animals. We don't make our pets die screaming in agony to the bitter end... why do we do that to the people we love? It's for selfish reasons, in my opinion. We don't want them to go, we want them here with us.

I know this thread has been a hard one for people to read... it's been rather hard to write, as well. But it IS a subject we should all think hard about. If, by reading and posting in this forum, even one person begins to understand that people DO have a right to end their own suffering at their own discretion, then I will know I have made a contribution to this world (other than raising my two wonderful sons, lol). There are too many people out there who are bitter and angry towards friends/relatives who made this choice, and it just isn't fair or right. Until you've walked a mile (ok, 100 yards for rsd patients) in their shoes, you just shouldn't judge.

Like I said in an earlier post, this is not something that will happen in the near future. You can't get rid of me that easily, lol! But when the time DOES come, I don't want you to think badly of me, either. We all have the right to decide when enough is enough.