Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-10-2007, 04:05 AM #1
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dreambeliever128 dreambeliever128 is offline
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dreambeliever128 dreambeliever128 is offline
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Join Date: Nov 2006
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Default Just wanting to say hi and to update

Hi everyone,

I just wanted to let all of you know that I am thinking of you and thought I would update you some.

I am moved into my new place but still have that storage unit to start on. Susan is going to help me do it this month so I can get rid of that bill. Even if I could afford it, I always think of storage units of being built to store the money they charge for them. LOL

As for the Vegal Nerve Stimulator, it is not doing it's job but I was told up to six months, even as long as a year. We have only turned it up once and plan on turning it up Friday. I have been putting it off due to the side effects I am having from it. One thing I wasn't told about it was all of the side effects. I have no doubt that they purposely don't tell people about them. I get a Newsletter every month on it and one of the side effects listed in this months was breathing problems. That's why I'm up tonight, I couldn't get to sleep for the breathing problems. Shortness of breath. This just started about a month ago. I am still determined to give it a shot anyway. I will let my Dr. turn it up on Friday but he said he'd be on call if I need him to turn it back down. Don't know Friends....

I am still having such bad days with my IC and other pelvic problems. I lost 3 lbs in 2 days last week due to my worst days. I go through them pretty often. I have tried 3 times to go off of my Methadone and that's what sends me into a tailspin. My Dr. gave me some TPI's and they helped some but not enough to go off of the Methadone like I want to. We are going to do a few more of them in the next month.

As far as my CFS, he gave me a script for Ridelin but so far my Insurance turned it down. I start fighting them this week for it. I can't wait to see if it will help the CFS. I have a friend on it and she says it works.

My kids are doing fine. Dustin and Devin both made the honor roll .Their team took first place in their Soccer division. They won 9 games out of 10. Devin also won a certificate for Best Comedian, Best Athelete, and Best Artist in the 6th grade. The whole time I was at their graduation and last day events though, all I did was think of Bill. Losing him is still unbelieveable painful. The 2nd was his birthday so that was very hard.

As far as the RSD, the crazy weather here in Co. has made it show up several times in my worst places. I do manage to get it under some control though with my Methadone. My saving grace is God, my Dr. and my Methadone and of course my family and all of you. I can come here to get the help and support I need.

I'm sorry I haven't been on here but I am still feeling overwhelmed with all I am going through. Losing Bill has really sat me back with everything.

At this point, I am just not doing good enough to stay on here but I did want to say hi to everyone and let them know about the VNS.

I have came on and read a little here and there but as I said, my depression isn't letting me do anything except what I must get done and that's with the help of my kids and Grandkids. My ex-son-in-law and my beloved friends I have here have been very helpful. Unfortunetly what I am going through just takes me to get me through it mentally. I am definately not in a good place right now. This is the 3rd time I have had to go off of here in the years I have been on here due to the depression and health.

I see my heart Dr. on the 22nd. We are also trying to find a Dr. to see what is going on in my right side and will deal with it.

I know a lot of you are worse off then I am and I am praying for all of you to start seeing some good days with the pain. Some of you have such hard times due to not having good medical help and I just wish you all could find that. With RSD though it seems impossible to find that even in the best of Drs.

I won't name all of you guys off because there are so many of you that have been good friends to me through all of this but all of you are special in your own way.

I know this is long but I still don't think I have Jose beat. LOL. I think I could give her a run for her money at times though. LOL

Have a good day and thanks for all of the support and love.

Ada
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