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Somehow I get the messages from Bonnie Clay Riley but no one else from the list.Any solutions for this??? I am subcribed as Rebecca Dillahunty. Thank you ,Becky ----- Original Message ----- From: Bonnie Clay Riley Sent: Thursday, April 25, 2002 4:47 PM To: [log in to unmask] Subject: Re: Snap, Crackle, Pop and Itch Deb, reality sucks. I have no words that could possibility express my hope for you. I have this ancient Irish prayer written down. This is for you. Deep peace of the running wave to you Deep peace of the flowing air to you Deep peace of the quiet earth to you Deep peace, deep peace Bonnie ----- Original Message ----- From: "Deborah Setzer" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, April 25, 2002 1:01 PM Subject: Snap, Crackle, Pop and Itch > Hi, > > I just got back from the doctor's office. I was told that my rash is > because of my PD+ (MSA), specifically that my immune system is not > functioning correctly. I was advised not to even go in our hot tub (which I > just got back into working order day before yesterday) or even a swimming > pool because I am likely to have a reaction to the chemicals in it. > > He also told me that my snap, crackle and popping is probably due to > osteoporosis but again, because of the other problems that I have, he did > not see the use in ordering a bone density test because regardless of the > results, he cannot put me on the medications available to fight it. He > reminded me that I am still unable to even take vitamins. > > He gently reminded me that the MSA is causing a lot of the different > major organ systems in my body to not work right. He is a very kind doctor. > He always spends a lot of time with me and answers any questions that I > have. He looked truly sad when he told me that he doesn't have any magic > answers. He ordered a number of blood tests (He wants to check my liver > function and current immune state among a list of other things) and > increased the dosing on 2 of my meds (famotadine & zyrtec) but is being very > cautious about adding any additional medications until after the blood work > comes back because he is afraid that I might get an even worse reaction. > > I talked to him about all of my left over medications and he is part of an > organization here in Charlotte that helps those who cannot afford meds. He > said if I brought him all of my unused medication the he can promise me that > it will get into the hands of someone who needs it legally. Maybe others of > you have such organizations in your area both for donating meds and > receiving them. It's worth a call to your doctors to find out. > > I don't know why, by now, I haven't figured out when I go to the doctor > they are not going to give me some magic pill that will make me well. > Because of the botched DBS and the resulting infections that I had earlier > this year, they cannot even give me anything to "make me more comfortable." > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on > steroids for a week. > > I'm glad ya'll are here. I have to admit something to all of you so that > I can have the courage to face it myself. I won't be able to have the DBS > redone for my PD+ (MSA.) I was scheduled for July 10 (penciled in) but the > reality is that the MSA is progressing, I'm not getting better. Harder than > that to face is that I'm not even over what my body went through from the > brain infection in January, no bad how much I want to be. Reality is if I > can't even take a darvocette...I would never live through the general > anesthesia for the DBS. > > Once again, I find myself back to that point of having to accept that this > is as good as it is going to get and I'm going to have to deal with it and > be thankful for what I can do and what I have done. (Denial is so much more > fun than reality)! > > Deborah > aka Tenacity > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsnGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn