Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Thank you , , Gail, Lu and Marilyn for welcoming me to the group - hope I will be of help in the future. For now, to help familiarise myself with everybody, maybe theres a list of names I can refer to - is that possible - my memory is lousey. I've been looking at some of your postings, 1) has anybody ever been told they have elliptocytosis which are the red blood cells being egg shaped instead of round? My GP mentioned this years ago but couldn't say why I had it, only that it was unusual. I do think theres a link somewhere. 2) Ringing in the ears - hallo ! I do experience this sometimes its a loud whine that diminishes and goes. I just assumed it was pressure balancing or a monster mosquito, but now I'm thinking maybe its to do with my hearing loss of last year or two, not a lot but a definite lessening. Audiologist couldn't tell if it was just old age creeping up or RP. I'm not on any medication, except ibuprufen when necessary, so I'm pretty lucky. I had talked to a young lady in New Zealand a few times, there are no specialists or help there and she had a lot of problems, so I guess we're lucky to be in Canada, US. When looking for info on the net 18 months ago there was ziltch. How long have you guys been up and running and are the majority in US/Canada. I'm interested to learn more about you. We have a cool, wet day here - perfect June weather. I've been walking every day, can't power walk any more, knee joints don't like it but I'm trying to keep as active as I can. Regards to all Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 ---------- > > To: Rpolychondritis > Subject: New member - Barb > Date: Sunday, June 03, 2001 9:30 AM > > Thank you , , Gail, Lu and Marilyn for welcoming me to the > group - hope I will be of help in the future. > > For now, to help familiarise myself with everybody, maybe theres a list of > names I can refer to - is that possible - my memory is lousey. > > I've been looking at some of your postings, > > 1) has anybody ever been told they have elliptocytosis which are the red > blood cells being egg shaped instead of round? My GP mentioned this years > ago but couldn't say why I had it, only that it was unusual. I do think > theres a link somewhere. > > 2) Ringing in the ears - hallo ! I do experience this sometimes its a loud > whine that diminishes and goes. I just assumed it was pressure balancing > or a monster mosquito, but now I'm thinking maybe its to do with my hearing > loss of last year or two, not a lot but a definite lessening. Audiologist > couldn't tell if it was just old age creeping up or RP. > > I'm not on any medication, except ibuprufen when necessary, so I'm pretty > lucky. I had talked to a young lady in New Zealand a few times, there are > no specialists or help there and she had a lot of problems, so I guess > we're lucky to be in Canada, US. > > When looking for info on the net 18 months ago there was ziltch. How long > have you guys been up and running and are the majority in US/Canada. I'm > interested to learn more about you. > > We have a cool, wet day here - perfect June weather. I've been walking > every day, can't power walk any more, knee joints don't like it but I'm > trying to keep as active as I can. > > Regards to all > > Barb > > > > > > 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 June 3, 2001 Report Share Posted June 3, 2001 Barb, Welcome to the group! So glad you found us. Most of the group lives in the US/Canada but there are people here from everywhere. I Live in Springfield, Oregon. I have had RP for 7 or more years. I lead a normal life for me that is!LOL Where do you live? I have been a member of the group since Aug. of last year. There is a list of members and if Heidi the keeper of the list was here she would be asking for your name, phone, etc. She makes up a list and it is to be used by the group only. You might even get a call from the phone bandit.LOL Take care and tell us more about you! Lots of Love Glenda New member - Barb Thank you , , Gail, Lu and Marilyn for welcoming me to the group - hope I will be of help in the future. For now, to help familiarise myself with everybody, maybe theres a list of names I can refer to - is that possible - my memory is lousey. I've been looking at some of your postings, 1) has anybody ever been told they have elliptocytosis which are the red blood cells being egg shaped instead of round? My GP mentioned this years ago but couldn't say why I had it, only that it was unusual. I do think theres a link somewhere. 2) Ringing in the ears - hallo ! I do experience this sometimes its a loud whine that diminishes and goes. I just assumed it was pressure balancing or a monster mosquito, but now I'm thinking maybe its to do with my hearing loss of last year or two, not a lot but a definite lessening. Audiologist couldn't tell if it was just old age creeping up or RP. I'm not on any medication, except ibuprufen when necessary, so I'm pretty lucky. I had talked to a young lady in New Zealand a few times, there are no specialists or help there and she had a lot of problems, so I guess we're lucky to be in Canada, US. When looking for info on the net 18 months ago there was ziltch. How long have you guys been up and running and are the majority in US/Canada. I'm interested to learn more about you. We have a cool, wet day here - perfect June weather. I've been walking every day, can't power walk any more, knee joints don't like it but I'm trying to keep as active as I can. Regards to all Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 In a message dated 6/3/01 11:44:31 PM Pacific Daylight Time, lizwizz2000@... writes: << I will be back in US at the end of June >> Liz.... how long will you be staying this time. Are you coming back to Beverly Hills? Boy I'm being nosy again. I want to thank you for sharing your wonderful Safari with us. Could just picture it all. Thanks Liz. I'm so glad you are still feeling so well. Must be those girls keeping you busy and young. LOL I'm glad your back. missed you.. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2001 Report Share Posted June 4, 2001 Welcome, Barb - I think we can all relate to the lousy memory!!! I think the majority of members are in US, followed by Canada, a few Brits, (including me, although I live and work in Saudi Arabia (and/or Africa/California/or wherever the family I work for goes!). There is also Arto in Finland and Jean in Switzerland. I believe there are a couple of other European members and also some S Americans, but guess what - I can't remember! Please forgive me, other Europeans! I am pretty lucky, I was sick for several years with breathing difficulties, fatigue, infections, joint pain, extremely painful ears, but when I was finally diagnosed, started improving. I take 20mg metho per week, at the moment am down to 5mg per week (lowest dose for over one year!) I also take meds for diabetes, high cholesterol and triglycerides, and also thyroxine. However I feel better than I have for years. I have energy. I exercise regularly, I try to eat healthily (eg lots of vegetables and fruit) I also take my vitamins! I will be back in US at the end of June, welcome again, Barb, and other new members, and take care everyone. Love Liz --- Harvey Freedman barvey@...> wrote: > Thank you , , Gail, Lu and Marilyn for > welcoming me to the > group - hope I will be of help in the future. > > For now, to help familiarise myself with everybody, > maybe theres a list of > names I can refer to - is that possible - my memory > is lousey. > > I've been looking at some of your postings, > > 1) has anybody ever been told they have > elliptocytosis which are the red > blood cells being egg shaped instead of round? My > GP mentioned this years > ago but couldn't say why I had it, only that it was > unusual. I do think > theres a link somewhere. > > 2) Ringing in the ears - hallo ! I do experience > this sometimes its a loud > whine that diminishes and goes. I just assumed it > was pressure balancing > or a monster mosquito, but now I'm thinking maybe > its to do with my hearing > loss of last year or two, not a lot but a definite > lessening. Audiologist > couldn't tell if it was just old age creeping up or > RP. > > I'm not on any medication, except ibuprufen when > necessary, so I'm pretty > lucky. I had talked to a young lady in New Zealand > a few times, there are > no specialists or help there and she had a lot of > problems, so I guess > we're lucky to be in Canada, US. > > When looking for info on the net 18 months ago there > was ziltch. How long > have you guys been up and running and are the > majority in US/Canada. I'm > interested to learn more about you. > > We have a cool, wet day here - perfect June weather. > I've been walking > every day, can't power walk any more, knee joints > don't like it but I'm > trying to keep as active as I can. > > Regards to all > > Barb > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 In a message dated 06/03/2001 8:36:37 AM Central Daylight Time, barvey@... writes: << maybe theres a list of names I can refer to - is that possible - my memory is lousey. >> Well, Barb, you will certainly fit right in! We all have pitiful memories, we call them brain farts or brain fogs and we truly have them often! Hang in there, the names will become familiar to you quickly! Love, Judy O Quote Link to comment Share on other sites More sharing options...
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