Guest guest Posted December 11, 2002 Report Share Posted December 11, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 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 > > Quote Link to comment Share on other sites More sharing options...
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