Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi Nina, my name is and i have had RP since Oct '97. I have a saddlenose from the RP. Though not that bad, i can see it clearly, but my husband tells me that it looks fine, and unnoticeable trying to make me feel better and it works, ha. I know this disease can have you feeling alone and isolated. Try not to let it get the best of you. I am so glad that you found this group. I was 24 when i got sick, thought my life was over. Now i am 28, Yeah i went down a bumpy road with RP back in '99, but i am better. I feel great and i refuse to give up.... >Cartilage replacement and correction surgery from RP damage< My doctor's recommended me to wait until i was completely off of all medications, that would let them know that this disease was in remission and medication was no longer needed. Otherwise i could flare back in the same area and have the same problem reoccur. Everybody is different so what may work for me, and what might happen to me, may not to somebody else. I did asked if any of the damage could be fixed with surgery. They said yes but that i should not worry about that now, my doctor's didn't want to go down that road with me just yet. They were just trying to figure out what was RP, and treat me the best way they could. They had not seen very many cases of this and there wasn't alot of info about it. My first Rhuematologist diagnosed me within two weeks. But the thing was he knew what to treat me with (prednisone), when my disease was getting aggressive he was not increasing the medication enough. I didn't know to, i was in denial i think about being sick and somehow thought i was overcome this like a cold. But I do think this is how i sustained alot of damage to my Trach area. I have a Left main Bronchial stent and a Trach. This does not stop me. I am in the gym 3 to 4 days a week for 45 min. 30min- cardio and 15min weight lifting. I workout better now than what i did when i wasn't sick. I have my bad days, i still cry here and there, but not as much. I have felt really good these past 8mos. I hope and pray it stays this way, i am dropping off of my prednisone, i'm down to 11mgs, i'm getting a little achy now, it feels like my body is adjusting to the decreased dosages. I'll be quiet, i could go on and on. But Nina, tell us what other symptoms you are having if any.....We are all here to listen and help if we can............... ---- Original Message ----- From: nina5808 To: Rpolychondritis Sent: Tuesday, May 07, 2002 11:01 AM Subject: I'M NEW I'M NEW TO THIS .DIDN'T KNOW THERE WAS A SUPPORT GROUP FOR RP. I WAS FEELING ALL ALONE...I'M LOOKING AT HAVING MY NOSE CARTLAGE REPLACED SOON..HAS ANYONE BEEN DOWN THAT ROAD TO HELP LET ME KNOW WHAT I'M IN FOR...COULD USE SOME ONE TO TALK TO....NINADISCLAIMER!!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...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 No thanks are necessary. We will always be here for you. Just feel free to jump in and ask all the questions you want or share your experiences with us. I'm 50, live in Calif, married 28 years, have 3 daughters, one grandaughter and one step grandson. I have been diagnosed with RP since 1999 but have had it longer. I am currently on pred and Plaquenil. Most of my flares have been in my ears, nose and ribs. My aortic valve has been damaged. The RP seems to be behaving right now. I am currently on 10mg of pred and hope to continue to lower 1mg a month and get off for good. Please remember we are here for all of you, not just the RP. Feel free to vent, rant, rave, cry or laugh. We like laughing alot. Thanks for sharing with us hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Nina, I am sooo glad to hear you are beginning to feel better! Hope it lasts. Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi nina I use to live in Pa, graduated from AG near Point n, Live in Ligonier area too. I go to Pa quite frequently to visit friends, Sometimes we just go to Uniontown to Red Lobster to eat. I'm sure you must pass close to me to go to town. Hope your doing much better. dawn Anita Langley wrote: HI DAWN,, I LIVE IN PA..BUT OUR CAMPER IN ON OUR SON'S FARM IN WEST VA. OUT SIDE OF CHARLESTOWN...I HAVE HEARD OF MORGETOWN,,I'LL HAVE TO LOOK ON THE MAP AND SEE HOW FAR YOU ARE AWAY....THAT EAR IS FINIALLY GOING BACK TO SLEEP....AND I'M STARTING DOWN ON MY PERDISONE..AND THE NOSE IS DOING GREAT...I'M STARTING TO FEEL HUMAN AGAIN...PRAISE GOD FOR THAT....HAVE A GREAT DAY.....NINA Re: Nina Hi Nina Wehre in WV did you go, I just came back from Big Bear Lake. We camp there all the time. Maybe I missed it but where are you from. I am close to town WV dawn alangley11844 wrote: HELLO ALL,,,JUST WANT TO WISH ALL A GOOD LONG WEEK END...I'M TAKING A BREAK AND GOING TO OUR CAMPER IN WEST VA. ..JUST TO WATCH THE DEER PLAY..LOL....AWAY FROM DOCTORS....LOVE AND PRAYERS COMING YOUR WAY...NINA Quote Link to comment Share on other sites More sharing options...
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