Sherie, , and all/pep talk. LOL

[Guest guest]

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 I have had RP for 10 years now and when I first got online, there were exactly 3 articles on RP all outdated.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.

[Guest guest]

susan-you don't know how bad i needed that. I really want to be strong but it is really getting to me. I know that i have to keep on fighting but i want to just not be so consumed w/ my R.P. I don't even get to fight my own battles I just wake up to a new one each day. I know that everyone knows what i mean. It just will not go away. I have been sick for 1 year now-my life as i knew it is over. I am fat & sick and have not had over 1 week of feeling good since i got sick. I am just trying to deal..........anyway thanks for the pep. michelle

>From: " Woods " >Reply-To: Rpolychondritis >To: >Subject: 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.