Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 You're probably not the only one who prefers the old format! K4 > First, Thanks to all the guys who have provided help over the last > couple of months. I hope I have been able to assist as well. > > 2nd, I prefer the format of the " old " club...sorry, but I do. > > 3rd, I have Rx now for HCG (Profasi) and hGH (Humatrope)and was > hoping to order 90 day supply through my mail order Rx plan, but > guess what they won't fill under my heath plan; in fact they won't > even give me a price if I'm willing to foot the whole bill. > So...any one run it to the insurance jam, can advise on economical > sources to fill the prescriptions? > > Cheers, > A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 I don't know about economical but if you have a scrip, you should be able to get that filled at just about any pharmacy. I do not understand the part about them not letting you buy it your self. How is that possible if you have a scrip from your Doc? If you need a pharmacy to work with, try http://www.communitydrug.com One of the pharmacists there is named , she has been really good to me. They'll ship meds to you. > First, Thanks to all the guys who have provided help over the last > couple of months. I hope I have been able to assist as well. > > 2nd, I prefer the format of the " old " club...sorry, but I do. > > 3rd, I have Rx now for HCG (Profasi) and hGH (Humatrope)and was > hoping to order 90 day supply through my mail order Rx plan, but > guess what they won't fill under my heath plan; in fact they won't > even give me a price if I'm willing to foot the whole bill. > So...any one run it to the insurance jam, can advise on economical > sources to fill the prescriptions? > > Cheers, > A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Larry, Unfortunately, the only experience I've had with the patch turned out to be a dismal one. They did not stick properly, came off frequently, caused nasty skin irritation, and my T levels did not get to a suitable level. MD put me on Androgel and I'm doing quite well on it. Maybe someone else in the group has had a better experience... Regards, K4 > Well, I was recently diagnosed with low testosterone (126). After > much bloodwork and a MRI of my brain (no tumor... woo-hoo!), my doc > started me on Androderm (5mg). I'm on my second day of wearing one > of these things and I have a couple of questions. > > First, I've noticed that while wearing it, the " sticky " edges tend > to wrinkle up which leaves little " tunnel " shaped gaps between the > patch and the skin. The gel center won't leak out of there will > it? The foil part of the patch seems impractical. It makes a > crinkley sound and doesn't seem to stick too good (I clean the area > with alcohol and allow to dry before application). I feel like I > need to baby the patch to keep it from pulling off. > > Second, I like to work in the yard and canoe. I've read that these > patches tend to come off when you sweat. I think they are suppose > to be ok in the water, but during both of these activities, I'll be > sweating a lot. Is there some way to keep these things on any > better (some sort of sweat proof tape over the top of them maybe)? > > And as far as storing these things... I like to primative camp (out > in the woods or swamps with no facilities... far away from > civilization). If you are going to be out away from everything for > a few days, and it's during the heat of summer or in the cold of > winter, how can you take these things with you and still keep them > around room temperature like the package insert says you must do? > Do they become useless if they go outside of that temperature > range? Would it be best to stop using them for those couple of days > that I'm out in the woods and resume using them when I return? > > Thanks for your help and advice. I'm just starting to learn about > all of this low testosterone stuff, so bear with me. I may be back > with more dumb questions. > > ...Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I would think you'd be better with Androgel. I too had trouble with the patches. I had to stick them down with micropore (medical tape), but I also got a rash, so after 3 months I gave up and went back to implants. The next best thing was shots, but I am looking forward to having Androgel instead and hope it works out well enough so I don't have to go back on the shots, though I know some people who get booster shots every so often and use Androgel in between. Steph ----- Original Message ----- From: " ldrunyan74 " Sent: Sunday, June 15, 2003 11:11 PM ............... First, I've noticed that while wearing it, the " sticky " edges tend > to wrinkle up which leaves little " tunnel " shaped gaps between the > patch and the skin........... > Second, I like to work in the yard and canoe. I've read that these > patches tend to come off when you sweat. I think they are suppose > to be ok in the water, but during both of these activities, I'll be > sweating a lot. Is there some way to keep these things on any > better (some sort of sweat proof tape over the top of them maybe)........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Larry, Welcome to our group! I have no experience with Androderm patch .... I'm on 10 G/dy AndroGel. Brad a member here recommended sometime ago for men on 10 G AndroGel, consider splitting dose to two 5 G applicatioins....that's what I do. My last blood work... Feb 25th '03 Serum T 922 (241 - 837) %FWBT 35.4 (18.3 - 62.3) FWBT 326.3 (66.6 - 276..2) Estradiol 41 (0 - 53) Estrogens 75 (40 - 115) T/E2 ratio 22.49 I like being at high end of serum T range. I do not have free T measured but rather free and weakly bound testosterone (FWBT) also called bioavailable T (bT), which presumably is more sensitive. This is also in our links section here http://www.alt-support-impotence.org/hormone_charts.htm charts giving optimal male sex hormone levels by age group. You might also consider subscribing to the newsgroup, Alt. Support Impotence....I'm in no way implying you have ED, but there's a cross over between ED and testosterone replacement therapy (TRT) and periodically I see posts there on Androderm patch. If my insurance did not cover AndroGel....injecting with Depo testosterone would be my next choice. Before switching to AndroGel Aug '01, I was injecting 100 mg Depo/wk....had blood work done on two different occasions. Blood collected 8th day after last injection of 100 mg Depo-Testosterone on... June 4th '01 .. . .Testosterone .. . . . . .Total . . . . . . . . 989 (241 - 827) .. . . . . Free. . . . . . . . .42.0 (6.6 - 18.1) July 9th '01 .. . . . ..Total . . . . . . . . . 774 .. . . . . Free. . . . . . . . . .38.8 My free T was way tooooo high and probably pushed my estradiol/estrogen (Es) levels up....so I switched to AndroGel and went on Arimidex for management of Es. Just my experiences... OR eon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 JOHN, I was gonna reply to your post before this. When AndroGel came out it was owned by Unimed and apparently Solvay bought Unimed. Anyway, in their initial trial with AndroGel, they found that ~13% of ~280 study participants failed to absorb AndroGel. My b/f was a non-absorber...he was up to 15 g/dy and still could not get his T up beyond ~350. He started Depo Injections and his T runs 900 - 1000. My E values back in time... Estradiol Estrogen 9-28-00........................71 (<54) 12-19-00.......................99 2-1-01.........................58 2-9-01.........................52 3-01-01........................96 3-26-01........................50 6-4-01.........................82..............................134 (40 -115) 7-9-00.........................55..............................200 8-2-01.........................87..............................198 Began 1 mg/dy Arimidex 9-29-01........................37...............................85 Began 1 mg Arimidex eod 11-2-01........................59...............................101 Resumed 1 mg Arimidex/dy 12-5-01........................50...............................124 3-11-02........................16................................44 1 mg Arimidex for two days....one day off 4-29-02........................27................................73 As this article states http://www.t-mag.com/articles/171estro.html There are two peaks of prostate growth, at puberty when testosterone levels are beginning to rise and ~50 yo age when androgen/estrogen balance is shifting around = benign prostate hypertrophy (BPH). I just did not think it healthy to be walking around with an estradiol level of 99 (<54) as I had on 12-19-00. When I had decided to go back on AndroGel, 8-2-01... my Es were 8-2-01.........................87..............................198 Also went on Arimidex 1 mg/dy then....two months later... 9-29-01........................37...............................85 As I wrote earlier, when I was on Depo, I never had mood swings, mid cycle....perhaps anti-depressant Wellbutrin and mood stabilizer, Lithobid, kept me steady. B/F had swings when he was injecting T...he switched to shorter intervals ~4-5 dys with lower dose. But he's on hCG now and uses Tamoxifen .... His T level is ~1250 and E's are in range. We're all so different, I think we just have to venture out, with some logic, and monitor our hormone levels with frequent testing until we are stabilized and where we want to be. My last estradiol level was 41 (0-53) and that might be unacceptable to some individuals, but I don't want to go higher than 1 mg Arimidex/dy; with that estradiol (E2) level that still gave me a T (922)/E2 ratio of 22.49. Hope this helps... OR eon RE: hi guys Hi OR eon I am on depo T shots right now. I had tried androgel, 5mg, but the results were not satisfactory because it was not on the high end for me. But anyways you mentioned : " I switched to AndroGel and went on Arimidex for management of Es. " How has AndroGel + Arimidex for management of Es helped you? Are you better with it now than just straight Testosterone? I am not interested in being fertile right now, but if Arimidex could be helpful in leveling my T 'swings' and help with Androgel, I would gladly use both. I see my Endo in 3 days so I'd love to hear your feedback. Thanks JOHN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Larry I was on the patch for about 2 1/2 months and I found: They did not stick worth a damn I had to use adhesive tape every day on each side of the patch, and that helped. But when I took the adhesive tape off, it left the old " black " tape lines. I had to put the patch, (by the directions) on a different location each day. They did very little for my testosterone levels. I had been at less than 100, so they were essentially useless to me. My wife, (when I had one) had to put them on my back for me because I ran out of thigh. When I tried to use them without the tape, sweat knocked them off within an hour. When I called the Customer Support number, what I got was a guy that did not want to listen, all he wanted to do was tell me to use more tape. I got off of them and went to testososterone injections, (intramuscular) and they showed almost instantly in my attitude. The patches are useless as far as I am concerned. Dick Re: hi guys Larry, Unfortunately, the only experience I've had with the patch turned out to be a dismal one. They did not stick properly, came off frequently, caused nasty skin irritation, and my T levels did not get to a suitable level. MD put me on Androgel and I'm doing quite well on it. Maybe someone else in the group has had a better experience... Regards, K4 > Well, I was recently diagnosed with low testosterone (126). After > much bloodwork and a MRI of my brain (no tumor... woo-hoo!), my doc > started me on Androderm (5mg). I'm on my second day of wearing one > of these things and I have a couple of questions. > > First, I've noticed that while wearing it, the " sticky " edges tend > to wrinkle up which leaves little " tunnel " shaped gaps between the > patch and the skin. The gel center won't leak out of there will > it? The foil part of the patch seems impractical. It makes a > crinkley sound and doesn't seem to stick too good (I clean the area > with alcohol and allow to dry before application). I feel like I > need to baby the patch to keep it from pulling off. > > Second, I like to work in the yard and canoe. I've read that these > patches tend to come off when you sweat. I think they are suppose > to be ok in the water, but during both of these activities, I'll be > sweating a lot. Is there some way to keep these things on any > better (some sort of sweat proof tape over the top of them maybe)? > > And as far as storing these things... I like to primative camp (out > in the woods or swamps with no facilities... far away from > civilization). If you are going to be out away from everything for > a few days, and it's during the heat of summer or in the cold of > winter, how can you take these things with you and still keep them > around room temperature like the package insert says you must do? > Do they become useless if they go outside of that temperature > range? Would it be best to stop using them for those couple of days > that I'm out in the woods and resume using them when I return? > > Thanks for your help and advice. I'm just starting to learn about > all of this low testosterone stuff, so bear with me. I may be back > with more dumb questions. > > ...Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 Hi Lynn! I won't say you're luckier than others, constant pain is a terrible thing to live with no matter where the pain is located. But I can vouch for the fact that when it's in the hands it's pretty miserable. My right hand is the most severely affected part of my body, and I've had to give up so many things as a result. I was a quilter, I did cross stitch and embroidery, all sorts of hand crafts. I was also a fairly decent painter. The only thing I can do at this point is knit and crochet, and I had to re-learn how to do that, I now hold the needles very differently than I did in the past. But we're all in this together, regardless of how the disease affects us. And yeah, it stinks. The PS never really bothered me, just a nuisance I had to deal with. But the PA controls my life and I hate it. Penny > Hi everyone. I'm new to this site too and very glad to see that I'm > not alone on several levels. I'm 36 and have been fighting PA for > about 3 years now and I've had psoriasis since I was about 10. I use > to laugh that I can handle this (psoriasis) because I could usually > control what was going on, but this PA thing just flat stinks. > > I agree with the previous poster that I feel 100 a lot of days but I > still believe that I'm luckier than a lot of people. My primary > problems are with my ankles, knees, back, neck and chest. I pray > daily that my fingers and arms stay ok so that I can work. > > Anyway, I just wanted to say hello and I'm looking forward to getting > to know everyone and sharing your stories and mine alike. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 --Hi Lynn, hello and welcome! I have the PA in back,neck and chest too. Took me forever to get the chest stuff diagnosed. This group helped me because I saw others had the same problem. My Rheum diagnosed severe chest wall Rheumatism/multifactorial. What does your Rheum call yours? Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2003 Report Share Posted July 27, 2003 In a message dated 7/25/2003 3:33:06 PM Eastern Daylight Time, lynnman2@... writes: > Anyway, I just wanted to say hello and I'm looking forward to getting > to know everyone and sharing your stories and mine alike. Hi Lynn, You are not alone here. We are all in the same situation. Waht meds are you taking for the PA? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Hi Penny, I agree with you whole heartedly about hating the PA and I can only imagine how it feels to have to give up something you love let alone several things. Prayers and good wishes to us all. I'm very thankful that I stumbled onto this site and I'm looking forward to getting to " know " everyone around here. Thanks. Lynn > > Hi everyone. I'm new to this site too and very glad to see that > I'm > > not alone on several levels. I'm 36 and have been fighting PA for > > about 3 years now and I've had psoriasis since I was about 10. I > use > > to laugh that I can handle this (psoriasis) because I could > usually > > control what was going on, but this PA thing just flat stinks. > > > > I agree with the previous poster that I feel 100 a lot of days but > I > > still believe that I'm luckier than a lot of people. My primary > > problems are with my ankles, knees, back, neck and chest. I pray > > daily that my fingers and arms stay ok so that I can work. > > > > Anyway, I just wanted to say hello and I'm looking forward to > getting > > to know everyone and sharing your stories and mine alike. > > > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Hey Marti... well my Rheumy hasn't really given me a name for much yet. Unfortunately I'm a situation where the office I go to has been going through some changes and I've now seen 4 different doctors in a years time. Fortunately though I've liked all the doctors I've seen so I haven't felt inclinded to go elsewhere and the chief doctor is brilliant so I'm hanging in there. With all this said, my most recent visit, last week, was actually the second time I met with this particular doctor and he is actually talking with me more and we are getting to know one another. Fingers crossed that he sticks around! Anyway, the doctors that I've seen mostly ask me how I am and if my meds need any adjustment. I'm one of those patients who has had very little luck with anything other than Prednisone and pain pills. We are just trying to keep me on as low a dosage of Pred as possible and yet keep me functioning. I am fighting my weight needless to say but at least I'm usually able to function. Believe it or not my biggest pain with the chest is when I sneeze. I live in Houston and have alergies like the rest of the state but when I sneeze now, I feel like I'm gonna split in two. I have even gone so far as to get alergy pills now from the pharmacist which I never had to do because in the past I could use over the counter meds that did " alright " . This whole thing truly is an adjustment to not only how we live our lives but how we plan what we used to never even think about. I apologize for the length of this post but you really made me think of some things. I'm going to put on my list (I always keep a running list of questions for my next visit) to ask my doc and see if he calls my aches anything in particular. I'll keep you posted (pun intended). Lynn > --Hi Lynn, > > hello and welcome! I have the PA in back,neck and chest too. Took > me forever to get the chest stuff diagnosed. This group helped me > because I saw others had the same problem. My Rheum diagnosed severe > chest wall Rheumatism/multifactorial. What does your Rheum call > yours? > > Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Thanks Allan! I'm glad to have found y'all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Janet, I am currently on 2 mg of Pred and 15 mg of Mobic a day but with that being said, I just had a flare up this week and was bumped up to 20 mg a day of the Pred and was given some Tylenol with codien (sp?) type pain pill (I will look up the name but the pills are at home or I'd tell you what they are-oops). Fortunately the Pred did the trick and I've only had to take one pain pill and since I'm feeling a ton better this week I will start bringing myself back down tomorrow or Wednesday. I mentioned in an earlier post that I'm one of those who haven't had much luck with anyting other than Prednisone. Again, like some others I am also on Fosamax and 1000 mg Oscall 500+D to help with the onset of Osteo. What are you taking? Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 -- > calls my aches anything in particular. I'll keep you posted (pun > intended). > > Lynn > > HAHA Yes it is a big adjustment. I also have tried many meds that don't work-Prednisone can be great if careful about the side effects. I never knew til joining this group that PA can attack the rib area. Some people's Docs call it PA,some chostochondtitis, mine Rheumatism. Doesn't really matter the name I guess. I am so glad you have good Docs. I have trouble in that respect. > > Best Wishes, Marti > > > --Hi Lynn, > > > > hello and welcome! I have the PA in back,neck and chest too. Took > > me forever to get the chest stuff diagnosed. This group helped me > > because I saw others had the same problem. My Rheum diagnosed > severe > > chest wall Rheumatism/multifactorial. What does your Rheum call > > yours? > > > > Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Well, I never thought about the rib area per se. But I guess it makes sense. I've had aches & pains over the last few years in places that I didn't even know could hurt. Unfortunately we do learn something every day! As for my pa docs I have had luck so far, I think, but not so much in the ps area. But, with that said I seem to have found a good one for now. I will tell you though that I had a heck of a time finding a good doctor in the small town I used to live in in North Carolina. I was greatful to get back to the big city as this is where I came and actually found out what was causing my swelling and pain. I kept telling the docs in the small town that I had psoriasis and I might have pa but only upon arriving back here in Houston did I get a diagnosis and drugs to treat the problem not just the pain. Please know I'm not knocking small town docs I just had a hard time while in my small town. Good luck, I hope you find a good doctor soon. Lynn > > > --Hi Lynn, > > > > > > hello and welcome! I have the PA in back,neck and chest too. > Took > > > me forever to get the chest stuff diagnosed. This group helped > me > > > because I saw others had the same problem. My Rheum diagnosed > > severe > > > chest wall Rheumatism/multifactorial. What does your Rheum call > > > yours? > > > > > > Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 I'm glad you found this place too. Although I just recently started posting myself, this place has been an incredible source of knowledge for me. I know you'll benefit from it too. Penny > Hi Penny, I agree with you whole heartedly about hating the PA and I > can only imagine how it feels to have to give up something you love > let alone several things. Prayers and good wishes to us all. > > I'm very thankful that I stumbled onto this site and I'm looking > forward to getting to " know " everyone around here. > > Thanks. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Hear! Hear! I'll second that! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Don't feel badly ... I live in a rural area on a 10 acre horse farm (no horses though :-( ) I have a nice combination of woods around me plus open field. I only have one neighbor in sight and they are across the road and down to my right and not that close. It is so quiet and peaceful here. I work with miniature pinscher rescue and my four minpins love the one acre of fenced yard they have. The primary issue for me is health care. There is a good hospital with a trauma center in town, but just one ... meaning, I don't get a choice when I need the ER or to be admitted. This is a growing community, but I don't like the limited numbers of specialists. I've had to shop around to find a primary care dr and finally found one. There is no rheumy here so I had to go out of town. THere are times I've been tempted to move back to Columbus or elsewhere near a big city, but I love the rural atmosphere (I grew up in Kentucky and split my time between a small town and the country). I have toyed with the idea of moving south cos the winters are really hard on my joints. I love Florida, but have been hesitant to make such a big move. Anyone on the list from Fla? Does the humidity affect PA? I would welcome any feedback. Also, I forgot to mention, believe it or not, that I am also profoundly deaf. I lost most of my hearing at 10 and lost what remaining sound and voice discrimination I had during graduate school. I learned sign language and college and became really involved in the deaf community. When I first developed PA, my hands were so badly affected that I basically couldn't sign. Thank God my signficiant other is also hearing impaired and was raised oral before learning to sign, so lipreading saved the day here! Not being able to sign well or not at all really turned me into a recluse. It is much better now, although two of my right hand fingers are permanently bent, and most people could understand my signs. It hurts, though, cos I was always considered to have a beautiful signing style and often asked to sign for videos, etc. I also did a lot of professional public speaking and people loved my signing. The big issue for us right now is that there are no professional deaf people in this area. I'm not knocking the " grass roots " deaf people, who I love, but we do need friends of comparable life experience and knowledge among the deaf community. We do have friends who are " hearing " but it is " work " to communicate without signing and it's just so relaxing to be among deaf friends. We were tempted to move to Tampa, which has a large deaf community, including lots of deaf professionals. Sorry to make this long, but I guess I have been trying to deal with a lot of this too much on my own. Thanks for listening! Jo Please know I'm not knocking small town > docs I just had a hard time while in my small town. Good luck, I hope > you find a good doctor soon. > > Lynn > Using M2, Opera's revolutionary e-mail client: http://www.opera.com/m2/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 - > > Also, I forgot to mention, believe it or not, that I am also profoundly > deaf. I lost most of my hearing at 10 and lost what remaining sound and > voice discrimination I had during graduate school. I learned sign language > and college and became really involved in the deaf community. When I first > developed PA, my hands were so badly affected that I basically couldn't > sign. Thank God my signficiant other is also hearing impaired and was > raised oral before learning to sign, so lipreading saved the day here! Not > being able to sign well or not at all really turned me into a recluse. It > is much better now, although two of my right hand fingers are permanently > bent, and most people could understand my signs. It hurts, though, cos I > was always considered to have a beautiful signing style and often asked to > sign for videos, etc. I also did a lot of professional public speaking > and people loved my signing. > >Hi Jo, I am touched by your signing problem. Sign Language is so beautiful. The movement can almost be dancelike. I learned a very little while working in human services and felt a loss when my hands' damage progressed and I wasn't good at it anymore. I used to joke that I had a signing lisp because my finger joints wouldn't move anymore. This is nothing compared to you who uses it as a main communication tool. You, too, are an inspiration. Best Wishes, Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Dear Jo, Thanks so much for sharing everything with us. Your pastural haven sounds just lovely - you described it so beautifully, I could almost see it in my mind. My, you have had a lot on your plate. I can understand your reticence about leaving the tranquility of your rural community. Peace of mind v. access to specialists and a deaf community - I can understand how tough these choices must be. Regarding humidity, personally speaking, it does affect my PA. I was in the Caribbean in April and it was very humid and it did cause some flare-ups. Here where I live (Vancouver, Canada) when it is hot my body loves it, but if humidity enters the picture, I feel worse. This is only my experience, however so I cannot say if this is common for the rest of you guys out there. I also react very badly from the cold, the same as you. Some people have told me Arizona would be the place to be. Being a Canadian, this is not an option for me, unfortunately. Take care and the best of luck with everything, Don't feel badly ... I live in a rural area on a 10 acre horse farm (no > horses though :-( ) I have a nice combination of woods around me plus > open field. I only have one neighbor in sight and they are across the road > and down to my right and not that close. It is so quiet and peaceful here. > I work with miniature pinscher rescue and my four minpins love the one > acre of fenced yard they have. > > The primary issue for me is health care. There is a good hospital with a > trauma center in town, but just one ... meaning, I don't get a choice when > I need the ER or to be admitted. This is a growing community, but I don't > like the limited numbers of specialists. I've had to shop around to find a > primary care dr and finally found one. There is no rheumy here so I had to > go out of town. > > THere are times I've been tempted to move back to Columbus or elsewhere > near a big city, but I love the rural atmosphere (I grew up in Kentucky and > split my time between a small town and the country). > > I have toyed with the idea of moving south cos the winters are really hard > on my joints. I love Florida, but have been hesitant to make such a big > move. Anyone on the list from Fla? Does the humidity affect PA? I would > welcome any feedback. > > Also, I forgot to mention, believe it or not, that I am also profoundly > deaf. I lost most of my hearing at 10 and lost what remaining sound and > voice discrimination I had during graduate school. I learned sign language > and college and became really involved in the deaf community. When I first > developed PA, my hands were so badly affected that I basically couldn't > sign. Thank God my signficiant other is also hearing impaired and was > raised oral before learning to sign, so lipreading saved the day here! Not > being able to sign well or not at all really turned me into a recluse. It > is much better now, although two of my right hand fingers are permanently > bent, and most people could understand my signs. It hurts, though, cos I > was always considered to have a beautiful signing style and often asked to > sign for videos, etc. I also did a lot of professional public speaking > and people loved my signing. > > The big issue for us right now is that there are no professional deaf > people in this area. I'm not knocking the " grass roots " deaf people, who I > love, but we do need friends of comparable life experience and knowledge > among the deaf community. We do have friends who are " hearing " but it is > " work " to communicate without signing and it's just so relaxing to be among > deaf friends. We were tempted to move to Tampa, which has a large deaf > community, including lots of deaf professionals. > > Sorry to make this long, but I guess I have been trying to deal with a lot > of this too much on my own. Thanks for listening! > > Jo > > > > Please know I'm not knocking small town > > docs I just had a hard time while in my small town. Good luck, I hope > > you find a good doctor soon. > > > > Lynn > > > Using M2, Opera's revolutionary e-mail client: http://www.opera.com/m2/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2003 Report Share Posted July 29, 2003 Jo, I live in Florida. I love it here! Yes, the humidity does have some effect on my PS, but I just plan ahead and have lots of temovate or desoximetazone (whichever is working this week) available and use it religiously to keep the PS from going totally out of control. Plus, if I make it a point to go to the beach weekly, that counterbalances the humidity problem for the most part. Sometimes I have to MAKE myself go to the beach, I feel so tired all the time I don't want to but it's soooo good for my skin. I had a hard time finding a rheumy here in North Florida who had seen PA before. I go to a guy in Pensacola, he's great. It a 3 hour drive but he's worth it. There may be plenty of knowledgeable rheumies farther south but here they are few and far between. BTW, I was a sign language interpreter for the Tennessee Dept of Rehab for 5 years. It was the best job I ever had. Some days I can't sign at all because my hands are the part of me that's worst affected by the PA. I really feel for your dilemma, for me at this point sign language is nothing but a hobby, no longer a way of life. But for you, well, you depend on that for your communication so I can't even imagine how frustrated and angry you are over this. If you ever want to contact me off list to discuss Florida or the deaf community or minpins or anything else, feel free. I'd love to hear from you. Penny I love Florida, but have been hesitant to make such a big > move. Anyone on the list from Fla? Does the humidity affect PA? I would > welcome any feedback. > > Also, I forgot to mention, believe it or not, that I am also profoundly > deaf. > Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Jo, I'm so glad you shared that with us. I am not hearing impaired but I do sign a little and I honestly hadn't even thought about those with pa that must sign out of necessity. My heart goes out to you. I'm so thrilled that you have someone in your life who can help you and be there when you need not only communication help but a shoulder. We should all be so lucky. I too am a dog lover and I am glad to get to know you and look forward to getting through all this together. Lynn > Don't feel badly ... I live in a rural area on a 10 acre horse farm (no > horses though :-( ) I have a nice combination of woods around me plus > open field. I only have one neighbor in sight and they are across the road > and down to my right and not that close. It is so quiet and peaceful here. > I work with miniature pinscher rescue and my four minpins love the one > acre of fenced yard they have. > > The primary issue for me is health care. There is a good hospital with a > trauma center in town, but just one ... meaning, I don't get a choice when > I need the ER or to be admitted. This is a growing community, but I don't > like the limited numbers of specialists. I've had to shop around to find a > primary care dr and finally found one. There is no rheumy here so I had to > go out of town. > > THere are times I've been tempted to move back to Columbus or elsewhere > near a big city, but I love the rural atmosphere (I grew up in Kentucky and > split my time between a small town and the country). > > I have toyed with the idea of moving south cos the winters are really hard > on my joints. I love Florida, but have been hesitant to make such a big > move. Anyone on the list from Fla? Does the humidity affect PA? I would > welcome any feedback. > > Also, I forgot to mention, believe it or not, that I am also profoundly > deaf. I lost most of my hearing at 10 and lost what remaining sound and > voice discrimination I had during graduate school. I learned sign language > and college and became really involved in the deaf community. When I first > developed PA, my hands were so badly affected that I basically couldn't > sign. Thank God my signficiant other is also hearing impaired and was > raised oral before learning to sign, so lipreading saved the day here! Not > being able to sign well or not at all really turned me into a recluse. It > is much better now, although two of my right hand fingers are permanently > bent, and most people could understand my signs. It hurts, though, cos I > was always considered to have a beautiful signing style and often asked to > sign for videos, etc. I also did a lot of professional public speaking > and people loved my signing. > > The big issue for us right now is that there are no professional deaf > people in this area. I'm not knocking the " grass roots " deaf people, who I > love, but we do need friends of comparable life experience and knowledge > among the deaf community. We do have friends who are " hearing " but it is > " work " to communicate without signing and it's just so relaxing to be among > deaf friends. We were tempted to move to Tampa, which has a large deaf > community, including lots of deaf professionals. > > Sorry to make this long, but I guess I have been trying to deal with a lot > of this too much on my own. Thanks for listening! > > Jo > > > > Please know I'm not knocking small town > > docs I just had a hard time while in my small town. Good luck, I hope > > you find a good doctor soon. > > > > Lynn > > > Using M2, Opera's revolutionary e-mail client: http://www.opera.com/m2/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Oops, that email address is scotty @ cyber-rights.net > Thought I would drop by to say hello. I feel like I have abandoned > all of you as I have been so busy and so happy I have not been around > much. > > Everything has been going so well I can't tell everyone here how much > I appreciate all of the support, information, and kindness you have > all shown. I have to thank K4 for managing the group and Or Eon in > particular for recommending this group from the impotence support > board a 18 months ago. Without his recommendation and all of your > help I'm not sure I would be here. > > Please feel free to email me any time if there is a question I can > answer and I have not been on the board or you just want to > correspond. i owe this group so much and if I can give a little back > I will. My email address is (take out the spaces) scotty @ cycber- > rights.net > > Thanks all, > > y Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 y, Good to see you back for a brief visit. I'm happy that everything is going so well for you and that pellet implantation is keeping your hormone levels where you want you. Ernestnolan and you have been role models for a few men here to investigate/begin testosterone pellets. Regards, OR eon Hi Guys Thought I would drop by to say hello. I feel like I have abandoned all of you as I have been so busy and so happy I have not been around much. Everything has been going so well I can't tell everyone here how much I appreciate all of the support, information, and kindness you have all shown. I have to thank K4 for managing the group and Or Eon in particular for recommending this group from the impotence support board a 18 months ago. Without his recommendation and all of your help I'm not sure I would be here. Please feel free to email me any time if there is a question I can answer and I have not been on the board or you just want to correspond. i owe this group so much and if I can give a little back I will. My email address is (take out the spaces) scotty @ cycber- rights.net Thanks all, y 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.