Hello

[Guest guest]

Hi Everyone,

I miss being able to write you all and read your emails too, but I don't have a computer that will work good enough to let me read more than one or two emails and it takes me forever to do that. Maybe one day I will have a computer that works like it should. (I am thankful for the little bit I have). I think about you all alot and have recommended the site to two young ladies that were facing the start of the sarcoidosis journey. I told them they would find the help they needed from you all.

Things have been a little bit messed up lately. My heart failure had been quiet for the most part since they put in the CHF InSyncIII Pacer 2 years ago, then all of a sudden about 4 months ago I started swelling up again and having breathing problems, blah, blah, blah. Then about 6 weeks ago my arms starting going numb and they tell me my neck is all messed up. They still haven't figured out what they are going to do about my neck. Now my ankles are starting, I was trying to figure out what was going on. For once I almost hope it is my sarc, I have read about AVN and I definitely don't want anything to do with that. I am at very high risk for that steroids, hyperlipedemia, etc and my ankle has gone nuts.

I don't think everything that happens to me is sarc, but I have been biopsied confirmed more than once. I know I have cardiac sarc, joint sarc, bronchial sarc, lung sarc, sarc in my mouth, etc. Why do doctors look at me and say "Oh it probably has nothing to do with the sarc" - they did this recently with the neck issue. I know I have developed osteoporosis, and everything else just about that steroids can cause. But I also know that the last x-ray of my knee looked like it had peas behind the joint. Sorry, just venting. It really upsets me that I may loose the ability to play the piano because of the way my left arm in particular is malfunctioning. Please keep me in your thoughts, I know I am not going through as much as a lot of your are facing.

Gripe session over. I am hunting a new cardiologist and I am thinking seriously about adding a new neurologist to that list. The neurologist I thought the world of in the practice went to Boston and I am not impressed with the partner. The other day he got a smart look on his face and asked me sarcastically why I declined to have an MRI. Note: He had my chart in his hand. I looked at him and reminded him that I had a 3 lead pacemaker. My cardiologist has never said (or helped) me very much, hands me an insurance paper to take to the front desk to sign out- the diagnosis on the paperwork "cardiomyopathy", he has never discussed this with me?

I forgot gripe session over. Sorry.........................

Take care all, and thank you so much for all you do and for being there with all your help, wisdom and compassion.

Connie

(Florida Born - Georgia Peace at Heart)

For the next couple of nights I will have access to an actual, good working computer. I am out of town until Friday afternoon.