Guest guest Posted January 4, 2002 Report Share Posted January 4, 2002 , I am glad you like this group! Also glad you are not letting the darn RP and Wegener's run your life. I think your outlook on life etc. makes a big difference. Besides who has time to be sick. Not me!LOL is not from Okieland just went to visit. Heidi is a german who lives in Tulsa. Several of the RP people got together in Okieland for a RP get together. There was about 45 people there from all over the USA, Canada and one from farther off than that. We had so much fun. My family is from back there too. (Kansas, Okieland, and Texas) If I can figure out how to go to the next family reunion this summer I can sneak in on Heidi and see her again.LOL I don't know whether or not my hubby is going to let me go all by myself back there or not. We will just have to wait and see. The next RP get together will be in Oregon in the year 2004. I haven't planned out the details yet but will start working on it soon. Where do you live? How long have you had RP? Oh I am taking over for Mrs. Nosey here and might get into trouble!LOL You take care and post whenever and whatever you like. Lots of Love Glenda Glenda, I am new to this support group having just joined a couple of days ago. I got the 2-for-1 special (RP and Wegener's Granulomatosis) but have managed not to let it define who I am. I can see from the emails that this group expresses the same attitude. Great! My type of people. My real reason for this email is to respond to . Is she an Okie? I am originally from OKC and all of my family is there. Just love those Okies. Am curious and will, of course, pray for her and all of us. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 In a message dated 1/5/02 6:58:43 AM Pacific Standard Time, katdavis@... writes: << 'll bet an RP get-together is a real eye-opener for those of us who have not had RP for a long time. >> ... It was soooo much fun... we just all seem to fit. like we knew each other for years. I can't explain what it does for your spirit. Hope you can make the next one. There are tons of laughs. Fluffy #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Welcome ! I am fairly new to the group, also, since mid December. I am newly diagnosed and am new to the condition, although I have had the ear symptom and other minor ones, for over 3 years. I hope you will find this group as wonderful as I have. Anytime you want to talk, it's here. I'm glad that you are living fairly pain free, but I agree, the fatigue can be really challenging. It's strange learning how to live differently than we are used to. That is my biggest challenge right now, but I know it's good for me. Take care and talk with you soon! > Good Morning, Glenda. Thanks for the reply. I live in the Kansas City area now (Olathe-on the Kansas side) but was born and raised in Oklahoma City and still have most of my family there. I'll bet an RP get-together is a real eye-opener for those of us who have not had RP for a long time. I started getting strange symptoms in Sept. 1999. It took 5 months, 14 doctors and 3 hospitalizations before I was sent to Mayo in MN for a confirmed diagnosis of both RP and Wegener's. I take Cytoxan every day (100 mg), Bactrum DS (for the Wegener's), Prednisone (I'm thankfully down to 7.5 mg, but still fluffy - verrrrrry fluffy!), Serevent, and other stuff like Fosamax, Prevacid, etc. Plus my own vitamins including Glucosamine. I am actually pain- free and stay that way most of the time. I really haven't had a significant flare-up for one year. My only problem is the permanent damage that was done to my airways (trach and both main bronchial airways). The cartilage was damaged and now my airways are floppy and breathing is pretty poor. The worst thing, however, is the fatigue. I just have too much that I want to get done! So I just conserve my energy and keep going. You can only go as far as you can push. I've always had a lot of drive and energy so I forge on. > > It's just so good to read about others with this disease that most of the world doesn't know about, let alone can pronounce! Like, I never knew I was fluffy - I looked at this person in the mirror and saw a fat, moon-faced woman squeezed into my clothes! But, fluffy I can live with. That made my day! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 Good Morning, Glenda. Thanks for the reply. I live in the Kansas City area now (Olathe-on the Kansas side) but was born and raised in Oklahoma City and still have most of my family there. I'll bet an RP get-together is a real eye-opener for those of us who have not had RP for a long time. I started getting strange symptoms in Sept. 1999. It took 5 months, 14 doctors and 3 hospitalizations before I was sent to Mayo in MN for a confirmed diagnosis of both RP and Wegener's. I take Cytoxan every day (100 mg), Bactrum DS (for the Wegener's), Prednisone (I'm thankfully down to 7.5 mg, but still fluffy - verrrrrry fluffy!), Serevent, and other stuff like Fosamax, Prevacid, etc. Plus my own vitamins including Glucosamine. I am actually pain-free and stay that way most of the time. I really haven't had a significant flare-up for one year. My only problem is the permanent damage that was done to my airways (trach and both main bronchial airways). The cartilage was damaged and now my airways are floppy and breathing is pretty poor. The worst thing, however, is the fatigue. I just have too much that I want to get done! So I just conserve my energy and keep going. You can only go as far as you can push. I've always had a lot of drive and energy so I forge on. It's just so good to read about others with this disease that most of the world doesn't know about, let alone can pronounce! Like, I never knew I was fluffy - I looked at this person in the mirror and saw a fat, moon-faced woman squeezed into my clothes! But, fluffy I can live with. That made my day! Re: ...about Okie land , I am glad you like this group! Also glad you are not letting the darn RP and Wegener's run your life. I think your outlook on life etc. makes a big difference. Besides who has time to be sick. Not me!LOL is not from Okieland just went to visit. Heidi is a german who lives in Tulsa. Several of the RP people got together in Okieland for a RP get together. There was about 45 people there from all over the USA, Canada and one from farther off than that. We had so much fun. My family is from back there too. (Kansas, Okieland, and Texas) If I can figure out how to go to the next family reunion this summer I can sneak in on Heidi and see her again.LOL I don't know whether or not my hubby is going to let me go all by myself back there or not. We will just have to wait and see. The next RP get together will be in Oregon in the year 2004. I haven't planned out the details yet but will start working on it soon. Where do you live? How long have you had RP? Oh I am taking over for Mrs. Nosey here and might get into trouble!LOL You take care and post whenever and whatever you like. Lots of Love Glenda Glenda, I am new to this support group having just joined a couple of days ago. I got the 2-for-1 special (RP and Wegener's Granulomatosis) but have managed not to let it define who I am. I can see from the emails that this group expresses the same attitude. Great! My type of people. My real reason for this email is to respond to . Is she an Okie? I am originally from OKC and all of my family is there. Just love those Okies. Am curious and will, of course, pray for her and all of us. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here 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 7, 2002 Report Share Posted January 7, 2002 That would be so much fun to get together with everyone. I am pretty new to this site so it would be fun to put faces with everyone I chat with. Let everyone know when the next one is and where..... Carol --- RCColloran@... wrote: > In a message dated 1/5/02 6:58:43 AM Pacific > Standard Time, > katdavis@... writes: > > << 'll bet an RP get-together is a real eye-opener > for those of us who have > not had RP for a long time. >> > > ... It was soooo much fun... we just all seem > to fit. like we knew > each other for years. I can't explain what it does > for your spirit. Hope > you can make the next one. There are tons of > laughs. > > > Fluffy #2 > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Sorry, Just read email saying where the next get together will be so disregard this email LOL --- carol applin wrote: > That would be so much fun to get together with > everyone. I am pretty new to this site so it would > be > fun to put faces with everyone I chat with. Let > everyone know when the next one is and where..... > > Carol > --- RCColloran@... wrote: > > In a message dated 1/5/02 6:58:43 AM Pacific > > Standard Time, > > katdavis@... writes: > > > > << 'll bet an RP get-together is a real eye-opener > > for those of us who have > > not had RP for a long time. >> > > > > ... It was soooo much fun... we just all > seem > > to fit. like we knew > > each other for years. I can't explain what it > does > > for your spirit. Hope > > you can make the next one. There are tons of > > laughs. > > > > > > Fluffy #2 > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.