sarcoid love to everyone

[Guest guest]

Hi everyone

I dont write very often but I do spend a lot of time reading everything that you all write. I am not feeling very sick now and I guess that Im scared and waiting for whatever else is going to happen. I was diagnosed with sarc last may and I really believed the doctor when he said that I would probably have no symptoms and in a couple years it would be completely gone... what a joke right now I have a pacemaker / defibrillator in my chest helping to keep me alive along with all the medications I have to take now. Last summer when I found out about the neurosarc I thought that was enough but I should have known better - I have always gotten the "unusual" side effects, and if something could affect just a small percentage of people in a bad way I would be in that group. I remembered that when I was in high school I had my palm read by some psychic and I was told that I wouldnt live past 34 or 36 I cant remember which but I have been thinking about that - Im 34 now.

I think about everyone in here with years of problems and pain and illness and here I am not even sick for a year and Im mad as hell that i cant go out drinking and partying anymore. Its not that I dont care about everyone else - because I really do, I cry myself to sleep almost everynight thinking about everyone and I dont have any right to complain because I have it pretty good - I still work full time and I am trying so hard to have a social life - but the guy i was with is scared to ... well anyways I guess Im more sick in my head then anything else. Thats why I dont write very often. Up until I went into the hospital in January I was still goin out and partying drinking and smoking - cigarettes and weed, but well, my father found it in my car and I guess he got rid of it ( he hasnt said anything about it so who knows) smokin weed was 1 thing that really made the pain go away for me. Now with my heart issues i stopped smokin everything and drinking - the medication does not advise it and Im scared to test it.

This weekend there is an autoimmunity conference in chicago so Im going on saturday to learn what ever I can. I dont know anyone else going and Im kind of scared to death of going there alone, but I feel like I need to,

Im sorry that Im rambling on and on

I listen to everything thats going on and I really feel bad when you are hurting

I wish there was something that I could do to help

I contacted the FSR and at work I was able to schedule a "jeans" day to raise donations for sarc later this month. The FSR already put it on there website

Is anyone from the chicago area?

well Im gonna stop now and try to go to sleep

I wish you all the best and pray for pain relief and

most of all a cure for this monster.

Love