Re: [SPAM]Re: Re: How do we get sarc??...to Tracie

[Guest guest]

I Have NS. I was dx in March of 05. I was in the University of Wisconsin hospital for a month while they tried to figure out what it was I have. It is new to my doctors so it was a trial period. After the month, and not much response they sent me to a nursing home. I couldn't move anything but my head. We all thought I wasn't going to make it.

In the hospt they had started me on prednisone big time. I became a diabetic, and a fat one to boot. while in the nursing home I became really tired of everyone telling me what to do and when to do it. I said this is the time to take control of my life.. And I did. After 5 months I was able to sit, feed myself, and carry on a meaningful conservation. I was able to say get me the hell out of this place.

I went home to a loving family of supporters. I have two grown children, a marvelous significant other, 4 grandkids and my hero--my sister. They pushed me hard to take control of me and keep it that way. It has been 3 years now. Little by little I improved. I am now walking, with a walker, driving my own car and doing things I didn't do before because I had to work.

As I said I started on prednisone. They added plaquinal, and I got the shots for the sugar. Now I take only 10 mg of prednisone, which they are going to taper me off of it. I also take methrotrixate, low dosage, placquinal, low dosage. I am no longer on the insulin. I take meds for dizziness, prn. All the vitamins and calcium and vit. D I need to keep me going. I am doing great with these meds. My neuro and rumy are so surprised at my progress they have written papers on me. I have also been asked to serve on the committee for the Elderly and Disabled adults.

I am very proud of my self and I think my doctors are great. Willing to try and learn.

I haven't needed to try the other meds and I hope I don't have to. I just hope I continue to get better and don't have anymore flares.

You sound so negative in your posts. My heart goes out to you as well as my prayers.

Before all this happened to me I was a CNA for 20 years. I rode motorcycle with a local Harley Group, I walked 6 miles a day and joined in all the cancer walks. I am a survivor of Breast Cancer as well. 15 years now. I am very independent so losing that tore me apart. I have learned to do other things and only dream that one day I will again be able to throw my leg over the saddle of a Harley. I have to keep trying and so should everyone.

I wish you all the best and hope this little bit of information helps.

I have made the lines from a song be my guide. *I get knocked down but I get up again, nobody gonna keep me down*. I sing it when ever I start to feel sorry for my self.

You take care and if you have any questions I would be glad to answer to the best of my ability.

As always Jackie from Wisconsin.

pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,> >

[Guest guest]

Tracie

Very well said. I have gone to a website and ordered the pamphlets and a dozen of the bracelets. I have passed them out, to my doctors, counselors, and friends. I am on a committee for the elderly and disabled adults so I can push the need for eyes and hearts to research our sarc monster. People ask why I am in this condition and I gladly explain to them what happened to me and tell them the need for research. We are talking about doing some kind of fundraiser next summer. I want this out there as well as you..

You are so right in saying we are in this boat together and with your help and help of the rest of the group maybe we can get someone to take the bull and work.

I am so very thankful I found this site. You and the other moderators have helped me so much. You have also helped my Doctors because I take the papers I print out with me. So thank you very much for being there. I am so sorry we had to meet this way and pray for all of us that someday soon we can find a cure if not the meds and knowledge to make it easier for all.

Again Thank You

Jackie from Wisconsin

*I get knocked down, but I get up again, NOBODY gonna keep me down*

pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,> >