NeuroTalk Support Groups - View Single Post

theoneRogue420 · 11-12-2007, 10:35 AM

Thanks for the posts everyone, they help a lot.

I am quite calm about all this, actually. I made peace with my God long ago, and I am now ready for whatever comes next.

The problem is this: What would YOU do if you were told that you needed five new medicines to save your life... but each and every one would affect your rsd/crps in a major way. Your pain level would triple to quadruple what it is now. How would you feel about taking them?

I am a firm believer in "quality of life" being more important than length of life. I have been close to that stage before... last time I was on aids meds. I eventually had to go off them because of pain issues. Spending half your day in bed trying not to cry is not the way I want to go out.

I WILL take all these meds... I am willing to try every option. I am strong enough to ride out the initial phase of reactions that every patient gets. But there comes a point where you say that's it, no more of this. You go off the meds and know you are going to crash again eventually, and will have to try a new combo of meds. They make new ones quite often these days, and I pray for the day that they make one with different side effects. I wouldn't expect to have NO side effects, of course, just different ones.

Yeah, I'll do what needs to be done, I always try to. I'm just not looking forward to going through this. I've been down this road before. This time, though, they are increasing the aids meds from two to four, and adding that human growth hormone treatment. If 1/3 of regular patients have the neuro-muscular side effects, what chance do you think an rsd patient has of NOT getting them?

Vicc, I'm sure you'll be getting a pm just probably not too soon. Today is the day I go to the dr.s and get all these new meds.

Condor, I love Spokane! I think it's mainly because I sit at home and go nowhere. People leave you alone this way, lol.

I have lived in many different climates from the humidity in Arkansas to the snows of Idaho Falls... the heat of Arizona, to the coast of California from top to bottom. I even lived in Coos Bay, OR. for a few months. My absolute dreamworld is Humboldt county in No. Ca. ... a place in the Emerald Triangle would be heaven.

But until someone takes pity on me and offers me a cabin in the woods, lol, Spokane Valley will have to do. It has very "middle-of-the-road" temps to me, less snow than Id., less heat than Az., etc.

Thanks everyone for your prayers and words of encouragement. You all make a great support group.

Rogue