Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Cathy, Oh Caitlin is so beautiful!!! Thank you for sharing her with us. I'm so glad that you are doing so much better. Sounds like you are on the right track now. Miss your posts, but so glad to read them when you do. Thanks for all of the information that you send. YOu know that you and Caitlin are always in my prayers. Take care and hope the year 2001 continues to be a miracle year for you. Love & hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Everyone: Haven't posted in a while since things here are hectic (as I am sure everyone else is also!) Wanted to wish everyone a Special New Year and one with Peace and Healing. I think of everyone often and try to read e-mail the best that I can. I am doing extremely well. Had my pulminary function test done 12/19. Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed some pulminary damage from the RP. When I went for the results 12/22, my pulminogist almost fell off his chair. He stated I was his Christmas miracle in that all the previous damage seems to be gone now. All pulminary function tests were within normal limits. He has worked alot with RP and states that he doesn't know exactly how this happened, but he was thrilled. He definately feels that the Adipex (ephedrine) pill I am taking along with anti-inflammatory meds and Minocin are the right combination for me. He does recognize that especially the ephedrine is controversial at best, but he wants me to continue on exactly the same medications with no generic. Again, he has seen the difficulty with RP and was so happy to see me doing so well. He stated no one would ever guess that I have RP since I am doing so well. No more episodes of the drooping eyelid or facial numbness right now. I talked with him in length about it and he definately feels it is related to the RP and vascultis and that anti-inflammatories and Prednisone are needed to get me through the flair-ups. I have basically fired all my docs except the primary care doctor and the pulminologist. Rheumy's keep trying to put me on meth when I am doing so well and both docs feel I'm holding my own. I'm not advising anyone not to have many docs, I just personally have been beat up so bad by their treatment and lack of knowledge that I don't have the energy to focus on what's wrong, only what is right. Of course, those of you who know me as an oldie with the group know that the real reason behind my normal test results lies in the strength of the Lord. God has certainly graced and blessed me beyond all my hopes and continues daily to increase my faith. I am so thankful that I have this group and do read e-mails even though I may not always post. I hope that any information I may have might help someone in the group achieve the level of wellness I am now living. I am still on some pain meds, but can actually forget I am sick at times. If anyone wants to know about the ephedrine as a possible treatment they should try to find information and take articles to their docs. I can say personally that I have tried to stop the medication 7 times now and each time I did, I lost control of my breathing and had to go on large doses of pred which still did not always control it. I do still lose my voice at times and ears do get red, but much less now. Hopefully, God will continue to heal my body and mind from this potentially devastating disease. Happy New Year again to everyone. Let this post stand as a reminder that God is with us and that RP can be controlled. I have been very sick from the RP but know am basically living a " normal life " ( Ha ha, this one is for the oldies who know what I have been through). I hope in the future more doctors will investigate treatment with Minocin and Ephedrine because these have at least turned my life around. God bless you all and wrap his arms around this wonderful RP family of ours throughout the coming year! P.S. included an updated picture of Caitlin. Can't believe children grow up so fast. Love ya, Cath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Cath First of all let me say how beautiful Caitlin is...she is growing up so fast...please give her a great big hug from me, ok? As for you Cath, all I can say is how proud I am of you... for all you went through this past Summer, both emotionally and physically.. what a tower of strength you are to me and to the group...when all seems lost, you are found by the Grace of God and your beliefs... I am so happy you are doing much better... please keep us updated as often as you can. I'll never forget that you were one of my first contacts with this group and your offer to personally help me and all the phone calls has pulled me through most of the bad times this past Spring and Summer when I thought my situation was hopeless. I'm very proud to call you my friend...Please don't hesitate to call on me should you ever need my help...God bless and keep you protected.. luv your friend Carmela ****************************** > >Reply-To: Rpolychondritis (AT) e >To: RP Group Rpolychondritis (AT) e> >Subject: Cath update >Date: Mon, 01 Jan 2001 15:24:43 -0500 > >Hi Everyone: > >Haven't posted in a while since things here are hectic (as I am sure >everyone else is also!) > >Wanted to wish everyone a Special New Year and one with Peace and >Healing. I think of everyone often and try to read e-mail the best that >I can. > >I am doing extremely well. Had my pulminary function test done 12/19. >Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed >some pulminary damage from the RP. When I went for the results 12/22, >my pulminogist almost fell off his chair. He stated I was his Christmas >miracle in that all the previous damage seems to be gone now. All >pulminary function tests were within normal limits. He has worked alot >with RP and states that he doesn't know exactly how this happened, but >he was thrilled. He definately feels that the Adipex (ephedrine) pill I >am taking along with anti-inflammatory meds and Minocin are the right >combination for me. He does recognize that especially the ephedrine is >controversial at best, but he wants me to continue on exactly the same >medications with no generic. Again, he has seen the difficulty with RP >and was so happy to see me doing so well. He stated no one would ever >guess that I have RP since I am doing so well. > >No more episodes of the drooping eyelid or facial numbness right now. I >talked with him in length about it and he definately feels it is related >to the RP and vascultis and that anti-inflammatories and Prednisone are >needed to get me through the flair-ups. I have basically fired all my >docs except the primary care doctor and the pulminologist. Rheumy's >keep trying to put me on meth when I am doing so well and both docs feel >I'm holding my own. I'm not advising anyone not to have many docs, I >just personally have been beat up so bad by their treatment and lack of >knowledge that I don't have the energy to focus on what's wrong, only >what is right. > >Of course, those of you who know me as an oldie with the group know that >the real reason behind my normal test results lies in the strength of >the Lord. God has certainly graced and blessed me beyond all my hopes >and continues daily to increase my faith. I am so thankful that I have >this group and do read e-mails even though I may not always post. I >hope that any information I may have might help someone in the group >achieve the level of wellness I am now living. I am still on some pain >meds, but can actually forget I am sick at times. > >If anyone wants to know about the ephedrine as a possible treatment they >should try to find information and take articles to their docs. I can >say personally that I have tried to stop the medication 7 times now and >each time I did, I lost control of my breathing and had to go on large >doses of pred which still did not always control it. I do still lose my >voice at times and ears do get red, but much less now. Hopefully, God >will continue to heal my body and mind from this potentially devastating >disease. > >Happy New Year again to everyone. Let this post stand as a reminder >that God is with us and that RP can be controlled. I have been very >sick from the RP but know am basically living a " normal life " ( Ha ha, >this one is for the oldies who know what I have been through). I hope >in the future more doctors will investigate treatment with Minocin and >Ephedrine because these have at least turned my life around. > >God bless you all and wrap his arms around this wonderful RP family of >ours throughout the coming year! > > >P.S. included an updated picture of Caitlin. Can't believe children >grow up so fast. > > >Love ya, > >Cath ><< DSC00010.jpg >> _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Cath, Glad to hear you are doing better. And thanks for sharing the picture of Caitlin, she is beautiful. Hugs, Sandy > Hi Everyone: > > Haven't posted in a while since things here are hectic (as I am sure > everyone else is also!) > > Wanted to wish everyone a Special New Year and one with Peace and > Healing. I think of everyone often and try to read e-mail the best that > I can. > > I am doing extremely well. Had my pulminary function test done 12/19. > Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed > some pulminary damage from the RP. When I went for the results 12/22, > my pulminogist almost fell off his chair. He stated I was his Christmas > miracle in that all the previous damage seems to be gone now. All > pulminary function tests were within normal limits. He has worked alot > with RP and states that he doesn't know exactly how this happened, but > he was thrilled. He definately feels that the Adipex (ephedrine) pill I > am taking along with anti-inflammatory meds and Minocin are the right > combination for me. He does recognize that especially the ephedrine is > controversial at best, but he wants me to continue on exactly the same > medications with no generic. Again, he has seen the difficulty with RP > and was so happy to see me doing so well. He stated no one would ever > guess that I have RP since I am doing so well. > > No more episodes of the drooping eyelid or facial numbness right now. I > talked with him in length about it and he definately feels it is related > to the RP and vascultis and that anti-inflammatories and Prednisone are > needed to get me through the flair-ups. I have basically fired all my > docs except the primary care doctor and the pulminologist. Rheumy's > keep trying to put me on meth when I am doing so well and both docs feel > I'm holding my own. I'm not advising anyone not to have many docs, I > just personally have been beat up so bad by their treatment and lack of > knowledge that I don't have the energy to focus on what's wrong, only > what is right. > > Of course, those of you who know me as an oldie with the group know that > the real reason behind my normal test results lies in the strength of > the Lord. God has certainly graced and blessed me beyond all my hopes > and continues daily to increase my faith. I am so thankful that I have > this group and do read e-mails even though I may not always post. I > hope that any information I may have might help someone in the group > achieve the level of wellness I am now living. I am still on some pain > meds, but can actually forget I am sick at times. > > If anyone wants to know about the ephedrine as a possible treatment they > should try to find information and take articles to their docs. I can > say personally that I have tried to stop the medication 7 times now and > each time I did, I lost control of my breathing and had to go on large > doses of pred which still did not always control it. I do still lose my > voice at times and ears do get red, but much less now. Hopefully, God > will continue to heal my body and mind from this potentially devastating > disease. > > Happy New Year again to everyone. Let this post stand as a reminder > that God is with us and that RP can be controlled. I have been very > sick from the RP but know am basically living a " normal life " ( Ha ha, > this one is for the oldies who know what I have been through). I hope > in the future more doctors will investigate treatment with Minocin and > Ephedrine because these have at least turned my life around. > > God bless you all and wrap his arms around this wonderful RP family of > ours throughout the coming year! > > > P.S. included an updated picture of Caitlin. Can't believe children > grow up so fast. > > > Love ya, > > Cath > > 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...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Cath, I am still not used to your name!LOL I keep thinking it is someone new posting. So glad something is finally going well for you! You sure deserve it! You and the Lord keep up the good work! What a pretty girl Caitlin is! Hope she realizes how lucky she is to have a Mom like you! Lots of Love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Cathy, Caitlin is so sweet!!! Glad to here you're doing well. Hope that 2001 is better for all of us. It's been quite a year for all of us. Take care and be well, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 WOW!!! Cath, you give hope to us all! You are truly blessed. It's so reassuring to know that with all the mysteries of this disease, God can heal us inside and out. We've taken care of the inside, now He's working on the outside. Of course, HE may thing hot red ears are attractive, who know?? Again, Congrats! LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 HI Everyone: I am new to the group and just got this e-mail. Just wanted to say that if God thinks these red ears are attractive then I for one would like to give them back to him.(HA)I always said God had a sense of humor because he made me. dawn --- JOstry93@... wrote: > WOW!!! Cath, you give hope to us all! You are > truly blessed. It's so > reassuring to know that with all the mysteries of > this disease, God can heal > us inside and out. We've taken care of the inside, > now He's working on the > outside. Of course, HE may thing hot red ears are > attractive, who know?? > > Again, Congrats! LOL, Judy O > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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