Sherie

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Way before I was diagnosed I also looked like I had been beat up by Rocky. The nose, eyes & cheekbones were sooo swollen & so sore. My PCP at the time thought it was sinus related because everything else was okay which is par for the course. I had sinus surgery & when the ENT saw my face the day of surgery (it was really bad), he said it wasn't sinus related but probably auto immune. I did need the sinus surgery though because they were a mess. He did autoimmune tests which came back normal, which is the norm for this disease. That was almost 2 years before I was diagnosed. I do have pictures that we took of my face at the time. If we can find them I will try to send them. It's not that bad this time but still sore. I know I have been overdoing so I am on rest mode now. Pain pills seem to help. I haven't called the rheumy because it's not that bad & I know he doesn't want to increase the pred. So if I can handle it & it stays the same I will try to ride it out. Hope this helps. Luv ya, Susiecue

[Guest guest]

10 lbs??????????????? aren't you lucky. I weighed 132 before i got sick-i was up to 200 lbs 2 months ago. Since then I have lost 10lbs since i am reducing the pred. In nov. i was sick 1 year. 1 glorious year. I used to smoke, but i quit about 6 months ago, it is still a struggle for me. every once in a while i still will want to smoke one, but it hust isn't the same. Maybe it is just having my hands occupied. but belive me it is difficult.

>From: " sherie hewitt " >Reply-To: Rpolychondritis >To: >Subject: Re: , Glenda >Date: Tue, 17 Dec 2002 06:14:08 -0500 (Eastern Standard Time) > >I can understsnd how you feel. I have worked hard all my life with my father >in his Const. business, roofing .framing,drywalling and the painting. NOW I >feel weak as a lamb I used to be so strong for a girl. ( my dad had girls). >And fat I have always had to watch my weight because I eat when i am sad or >mad, and my sisters are both small and eat anything I have only gained 10 >pounds BUT I could not afford to gain 1 lp. And during all this i am trying >not to smoke. I have never told anyone in this group that I smoke. This the >hardest part of this I know I have to quite now. >SHERRIE > >-- Sherie, , and all/pep talk. LOL > >Date: Sun, 15 Dec 2002 19:32:19 -0500 > > > >Hi Sherie and everyone, > >I just want to add my two little cents here. I've been where you are all >now. In fact, I am suppose to be dead by now. I have had RP for 10 years now >and when I first got online, there were exactly 3 articles on RP all >outdated. The most extensive one I read claimed most RP patients were dead >in 10 years. To add to my misery and suffering the first Rheumy I saw told >me to write my will. This was his exact words!!!! I was a zombie for weeks.. >..... > >Then I met an angel named Angie who told me the " real " facts. She was a god >send to me. I know some of you are just learning to deal with RP and are >finding out what damage you have and I know you are very very scared. I can >relate as everyone here can, believe me, we all have been there and a lot of >the members are still dealing with this. But!!!! and there is a but........ >LOL Sherie, it sounds like you have excellent doctors which a lot of us >never had. They know how to deal with this and it sounds like you are >getting the kind of treatment for this disease early in your illness, so >please girl, don't get depressed, be so happy that you have the kind of help >you need. You will be OK, I just know it. Your doctors will find the right >drug regiment to treat your RP and stop it and you will be just fine. The >main thing is not to get discouraged and try like hell to keep your spirits >up. The damage done can not be reversed, but your doctors sound dedicated to >making sure no other damage is done, so you are going to live a long life. >You keep your chin up and keep the faith. > >, I can really relate to your body screaming in pain as I know many >members in the group can. > >I'm so glad you use this group as a sounding board. God knows I did when I >was hurting. Most of us can relate to your pain. Do you have fibro also? I >have been where you are many times. I feel for both of you so much. I can >remember crying, hurting, and wondering if I was going to live another year. >BUT!!!!! I am now in partial remission and doing good. This is the main >thing I want you both to know. It's not hopeless and it will get better with >the right drugs, exercise and positive thinking!!!! > >Please just try not to let yourselves get too down and remember it will get >better and one day you will both, ALL OF YOU will end up in remission. Keep >the faith!!!! I know we all get depressed over this damn disease, but don't >let that depression overwhelm you, keep it all in perspective and get >yourself thinking that this will not defeat you. > >Life will get better. Just keep that chin up and keep the faith. I'm sorry >I went into a book here, just wanted you Sherrie and and everyone >to know that I have felt your pain and depression many times before, but I >am so much better now, it took quite a few years, but it will happen to you >too. Remission is a beautiful word. Learn it!!! You will be saying it before >you know it. Trust me on this............ > >Prayers are with you all. > > w > > >>>>>>>>>>>>>>>>>>>>>>>>>> > > I flared up something terrible. my ear, nose, same tie and really bad. >Also my lower back and neck are hurting so bad it is making me sick. i went >back up on my pred. I am sick of this disease. > > > >Tired of spam? Get advanced junk mail protection with MSN 8. >DISCLAIMER!! >WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED >HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING >ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND >ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE >DIFFERENT FOR MANY OF US. THANK YOU > >