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Everything posted by miocean

  1. GREAT IDEA! I have "bling" from decorating my masks. I'll have my husband glue them on. I can't do it, I don't have the small motor skills any more. miocean
  2. I am wearing a splint once again and this time am being "compliant". It actually feels good! This one is a soft neoprene one for the thumb on my left hand. The joint where it connects to the thumb is swollen, pops, and hurts. This cushions it and makes it feel better. It is bright blue and only about 5 inches long. My OT also made one for my index finger, it is plastic and ugly, but I don't' have to wear it all the time. I've been having trouble with my index fingers, they are the most contracted, and lately they have been going into cramps and contracting more. When they do this, I can slip on the splint and it will force my finger to straighten. It happened last night while I was writing with a pen and it helped. I have a drawer full of splints he made me over they years from up to the elbow, the wrist and just the finger but I can't wear them. I am volunteering at a black tie event for charity tonight and won't wear it. It's not black! ;) miocean
  3. I just sent this information to my niece. She has been very fatigued lately and is only 25. She is very busy, is a nanny for 3 kids, is going to graduate school and, of course, enjoys her life like at person in their 20's should so it could be nothing but lifestyle. I love her and worry about her. If I hadn't asked to have that old ANA test run, I may never have been diagnosed and would have died of renal failure. I, too, am concerned about this new test. miocean
  4. It's miocean again. There were many past posts on what may have caused scleroderma. Here is one How did I get this?. That was just one, I remember ones on exposure to things like working in a beauty salon or with artist materials (hi moderator, maybe you can help find that one.) I had silica exposure. I was the ceramic studio assistant in college and handled raw silica with a lot of dust and no ventilation or breathing protection. But my professor, who had much more exposure than I, never developed scleroderma. I handled a lot of art materials. I also had mold exposure, the classroom next to mine was contaminated and all they did was hang a sheet of plastic between the two rooms until it was cleaned up. The superintendent assured us that the entire school was tested and that was the only area, but that was Sept. 2003 and I got sick in February 2004. Coincidence that I and several other people who worked in that area over the years have autoimmune diseases? I also worked across the street from a carpet company that burned down and when they tried to sell the property couldn't because it was so contaminated. I went to therapy once for compulsive overeating and my counselor made a point worth remembering."If your lawn gets a brown spot, do you dig up the whole lawn to find out what's wrong, or do you treat the area?" I take that approach with the disease. I have it. I don't know what caused it. Treat the symptoms. Of course it would be great if research could discover the cause so that a cure could be found but as I mentioned in the previous post, it is not a disease that sits alone in that way. Unfortunately, we are a money making machine, like cancer. We pay for doctors, prescriptions and tests. The medical industry is a huge one and would go broke if they found a cure for cancer and other diseases. Very sad, but I believe it to be true. miocean
  5. Unfortunately, most diseases have unknown causes and no known cure. In working with sick children, I am amazed at the diseases I never heard of and that have no cure. My father died from lung cancer in 1971 and we felt for sure if he had just lived longer there would be a cure but even with all the billions of dollars poured into cancer research there still is none. There is more awareness of scleroderma now, and by talking openly about it you can create more. I know while I was very sick, I didn't want to talk about my disease, I was in denial and wanted to portray that everything was fine. Now that I am feeling better, thanks to the gift of a kidney, I speak about it. I don't go into details to bore people with my medical history and I focus on the positive. (Thanks Amanda, you are one of the BEST at that!) One of the most frustrating things for me is the damage to my hands. I was an artist and a teacher and now have trouble holding a pen. My handwriting has become better over the past couple of years, but if I have trouble doing something, like opening a bottle, and need to ask for help, I will tell them I have bad hands because of scleroderma and need help. I don't go any further unless they respond. Many will say, oh, I've heard of that and want to know more, or what is that, or nothing. I follow their lead and give more information if needed. I will say I've had a kidney transplant and many are interested in that. I will tell them about scleroderma to inform them of both the disease and organ donation. This forum is the best place for information and support. As we know reading the internet can scare you. (Of course with us, that's an ongoing GI issue :VeryHappy: ). I thought I was going to die 6 years ago and here I am. So help out. Have enough stuff? Ask for a donation to ISN for a special occasion. And if you can't do anything, are too sick, or financially strapped, take part in the forum. I lurked for months before signing up. It was my first foray into forums, I was afraid that my privacy would be invaded, and I was afraid to share. We all help each other, whether we have the disease, have a relative with the disease, or are caregivers. Keep asking questions. And thank you all for being there for me and everyone else! miocean
  6. I'm sad today because I lost one of those rings I thought fit again! AND I have to wear a neoprene splint for my left thumb. But I'm still happy :VeryHappy: miocean
  7. :happy-day: Susieq :happy-day: Keep up the good work! miocean
  8. My OT wants me to wear splints on my two index fingers. I HATE splints, he has made several for me over the years that I am "non-compliant" about wearing. But he just showed me some that are sterling silver and look like rings. He's going to make me a plastic one to see if it works and, although they are expensive, if they work I'll invest in them. I hate things that make me look ill to the world, like my oxygen, just a sign saying hello world, I'm sick. I guess I'm vain. :P miocean
  9. I agree with keeping medical records but how many and where? Just my blood work alone since transplant would fill up a book. The only actual report I've seen is one that had misinformation and said I was non-compliant (which I am. :barf: My general practitioner was the first one to get computerized and when I go I bring recent tests and they are just scanned into my records. I want one of those machines. Most of my doctors are computerized now, but not my gyno or nephrologist. Is there a law that says they have to be computerized by a certain date? Good thing I asked for a copy of one of my labs, my sclero doctor requested an Adolase test for myopothy and they ran Aldosterone. The only reason I knew that was she is notorious for not getting records so I bring hard copies to her and got one for that. I called and told them it was the wrong test and to take it off my bill, but now I have to go and register again and have it drawn. :( I go for regular labs on Monday so it's not like they have to stick me again but it's a pain to register. miocean
  10. Joelf, Welcome and thanks for adding your talents! miocean :happy-day:
  11. I'm happy today because... the sun is out and I am feeling good, I am meeting a high school friend for lunch, I have a roof over my head and food in my belly, I am in a loving relationship, I have good health insurance (!), there are good people in the world, AND my new kidney is improving everything, all function tests are getting better and best of all, my rings fit on my fingers again! Surprise, surprise! I had put them away years ago, had the ones I wear resized a couple of times and the other day got them out and they fit!!!! :D I am back to being a ring on every finger girl! miocean
  12. What a wonderful set of memories! Your daughter sounds very special. I lived in Florida when Disney world was built and went several times to it and Epcot but the last time I was there was 25 years ago and I know it has changed. I can't believe so much time has passed so quickly. Disney is the biggest dream of children, that's what most want to do but adults love it too. miocean
  13. My mother-in-law had scleroderma and a very dry mouth which was attributed to radiation for cancer, but I think it was sclero related. Little by little her teeth started falling out. We tried to get dental care for her but no dentist would touch it, said the risk of infection was so great they wouldn't do it. She was in her mid to late 80's when this happened. She ended up with 4 teeth! I didn't think of using my water pick for my teeth. I have trouble flossing because of my hands. I have one because I had sinus surgery years ago and the doctor had me get a nasal attachment and run salt water through my nostrils. (Great for those of you with sinus problems) I haven't been to the dentist since February and can't go until March because of my kidney transplant and have worried about my teeth so I'll dig it out and use it. I, too, think my teeth were overfilled as a child. And, likewise, I am in the position now where they crack and I have to get crowns. $$$ But I think it's very important to keep your teeth if you can. miocean
  14. Pur, I just went to the doctor today because I have been having trouble with my legs aching and cramping. I looked at Restless Leg Syndrome online but my legs don't move at night. My sister has it so badly she literally wears out her bottom sheet! I searched Achy Legs and one of the cause was RLS. My doctor checked my pulses in my legs and ruled out circulation issues, one by one we knocked off all the other causes and the bottom line was whatever I have is not bad enough to take daily medicine and I will just have to deal with it. He said he gets cramps sometimes, too. I guess it's just a part of that wonderful process called aging. My husband told me he read that putting a bar of soap underneath your sheet helps. It's worth a shot. Good luck! miocean
  15. I, too, had a dry cough for a couple of years. There is a discussion on the forum about dry cough. Dry Cough/Throat clearing. So far this year, with the onset of cooler weather, my cough hasn't returned. I hope it stays this way for me and that you get to the bottom of your problem. miocean
  16. Those are my hands and my face, too. I thought diffuse scleroderma was bad but the pictures of morphea were disturbing. miocean
  17. Living at the shore in NJ, winter means we have our town back, no tourists. It is the best time of the year for surfing and it's fun to watch those brave enough to put on wetsuits from head to toe and get out there. We don't usually get much snow here but last winter we had 64"! We live in a condo so we don't have to shovel. I love watching it come down, it is magical.However, on an early October trip to Vermont and New York state it snowed, and that was definitely too early for me. I was a teacher, so snow meant no school (yea!) and they are pretty good about clearing the roads around here, especially the main ones, so driving wasn't really a problem, but the years I was on dialysis I always worried when storms were forecasted. I have a 4 wheel drive and it's very flat around here, except for going over bridges, but I would still be concerned about being able to get to the center. They were very good about adjusting times and shortening shifts in emergencies so everything turned out ok. We are putting in new windows, so that should make our place warmer, I am ordering silk undies, and I have learned to layer. My husband likes it cool inside, he would prefer 68 degrees while if I had my preference I like 72 so we compromise at 70, and have the battle of the thermostat. I used to take hot baths to warm up but can't anymore, I have difficulty getting up and down from the tub, the calcinosis on my buttocks makes it very uncomfortable, and they were drying out my skin too much. Hot liquids help a lot and now that I am no longer on fluid restriction I am enjoying cups of tea. I am a girl of summer but enjoy the change of seasons. I guess the thing that makes me happiest about winter is knowing it won't last forever! miocean
  18. SusieQ, I sympathize with you in two ways, needing a transplant and losing weight. I was in the kidney transplant program, not lung, and things might differ, but here are some things I can share: Different transplant centers have different requirements. We were told by a transplant surgeon at a support group if you are turned down at one center because of your weight, investigate another location. 40 lbs. may seem like a lot to you, but there was a very heavy woman at my dialysis center and I asked her if she applied for a transplant. She said she didn't qualify because of her weight, they wanted her to lose more than 100 lbs. and she had already lost 100!! She really was pretty amazing, worked full-time as a teacher and was always smiling and joking, an inspiration to me. I became sick 4 months before the kidney came along and started losing weight. I went from 173 to 153 and actually got reprimanded by the nutritionist and nurse practitioner. Then my scleroderma doctor did the same thing when I lost 5 more pounds over a 3 month period. Like you, I've had weight issues my entire life and in the past was only able to maintain 140 lbs., a good weight for me, through vigorous exercise. That is what I weigh now and I monitor it daily because of the prednisone. My body tends to want to weigh 170 and I don't like that weight.I am not able to exercise very much, I have ILD and just don't move very well so I watch what I eat and if the scale goes up, I cut back a little. It is most important to watch your calories. Not that I am advising this, but a nutrition professor at a major university just did an experimental study on himself. For a few months he ate nothing but junk food, high salt snack foods and twinkles. He kept his calories to around 1600 a day. He lost 20 lbs. and his cholesterol went down. As soon as he added meat to his diet it went up again. Try to eat healthy foods but watch your calorie count and even without the exercise you should drop some weight. I hope things work out for you, that you get on the list and get a lung right away. Keep us updated, please, miocean
  19. Dear Heather, Congratulations on the new addition to your family. :happy-day: He is a lucky little boy. My sister-in-law adopted twins from China and changed their lives forever. i'm sure you will make a great mom, even with your scleroderma. Best wishes, miocean
  20. Patty, I had major problems with my hands. I could barely write and even using a keyboard was difficult. Over the years they have improved. My handwriting is much better, but I have to use a thicker pen with a cushioned grip. The ones I use come with a free refill, the only problem is I lose them before the ink runs out! There are also voice memo recorders if writing is an issue. Good luck with finding a solution. miocean
  21. Hi Northstarhope, First of all I hope your sister is doing better. Lisa Bulman is an ISN Fundraiser. She holds a yearly "Scoring for Scleroderma" soccer tournament fund raiser and an on-line Pampered Chef Party to raise awareness and funds. There is a "Donate or Shop now" link on the right side of the pages on the main site, but is is very subtle. There you will find ways to donate and also awareness bracelets and brochures. With all the years of using the forum, it never occurred to me to donate, or even how this site was created and managed. I donate yearly to a scleroderma group and didn't even know which one until I received a recent mailing. I will be changing my donation to the nonprofit International Scleroderma Network (ISN) this year. Since I started developing the eNewsletter my eyes have really been opened to the time and effort put into the development and management of this site. It is really rather amazing that so many worldwide volunteers have helped to create thousands of pages available here for your use. Your donation goes to tackle scleroderma research, support, education, and awareness. There are absolutely minimal administrative costs, unlike many nonprofits where you will find most of your donations goes to paid employees and offices. If you are financially unable to make a donation, you could become a volunteer. Or you could be creative with a fund raiser. There are many companies that let you hold parties for their products, giving you a percentage of sales. You could invite your friends and make a fun evening out of it, and they would know they are helping. You might not be able to do it online like the Pampered Chef, but could create awareness and raise funds at the same time. Just a note: for the first time in 50 years donations to charities have gone down. The poor economy is affecting everyone. If you don't have the finances or energy to do anything, just being open about the disease creates awareness. At first I was reluctant to talk about my health with others figuring no one wants to hear it but am more open now. It is what it is. I can't tell you how many people I have talked with and told them I have scleroderma and they tell me, "Oh, my mother-in-law was just diagnosed with that," or "My friend's daughter has it." I always refer them to this site as the best resource they will find. Both my mother-in-law and my best friend's mother had it. I don't know if it is this part of the country (Northeast) but more and more are being diagnosed with it and many people will tell me they have heard of it. Thank you for wanting to help. As you know from your sister, it is a terrible disease. Not that there are any good ones. miocean
  22. This article was very interesting to me as a right heart catherization in January 2009 showed mild PH (39 with a mean of 25). Both my cardiologist and pulmonologist said no treatment at this time but my scleroderma specialist wanted to put me on Letairis (she said with scleroderma you should treat it at 20). I applied for the LEAP program, which you have to do to go on the drug, and then the transplant came along and my nephrologist said no new drugs. I was very worried about the side effects and cost so that was fine with me. I just had an echo and it showed no signs of PH. I showed it to my pulmonologist who said if I was a "normal" person (without scleroderma or a new kidney) he would treat the PH. I have to make an appointment with my cardiologist and see what he says. I may need another right heart cath. My breathing has greatly improved, but I do breathe heavily when I lay down in bed at night which is a symptom. Thanks for posting this. miocean
  23. Buttons, I know surgery can be scary, I was a mess the months before my kidney transplant, but after it became time for it I was calm and just knew everything would be okay. Your's sounds like a difficult surgery and you will face a long recovery, but the end results will make it all worth it. Try not to worry about it during the waiting period. Make sure you have plenty of help after, don't be afraid to accept people's offers to do things for you, they want to help. Stay strong and keep us updated. I'll be thinking of you. miocean
  24. Sheryl, Interestingly, when I read up about parasites, one of the places it mentioned picking them up was Hawaii! I am very careful in Mexico with what I eat and drink. Only bottled water and purified ice, no fruits or vegetables, NOTHING off a street cart. Preferably bottled drinks opened at the table. Oddly, I was in Costa Rica right before my scleroderma symptoms started. My chiropractor was convinced I had picked up a parasite. I went to two infectious disease specialists, had all sorts of tests run, my chiro even contacted a doctor in Costa Rica and asked, based on my symptoms, if I could have picked up anything. Everything was negative. No place is safe. There are bed bugs. Dust mites. Legionaires disease. Terrorism. Violence. Pick pockets. Drugged drinks. Germs are everywhere, even in your own home no matter how clean you keep it! I think caution wherever you go is vital, but not to become completely crazy about it. My husband has given up so much for me and has done so much for me and he really wants to go back to Cabo. I'll be careful. Thanks for your suggestions and concerns. miocean
  25. Hi everyone, I just wanted to let you know that my nephrologist, the one that I know and love, came back! :emoticons-yes: He walked into the examining room this week for my monthly and I said," oh, you're smiling today." :D He said he had a really bad day last month. All my labs are great and he said I could go to Mexico in January. He is really concerned for my safety and I told him I could get shot by going into two nearby towns.He said the safest place to be is in your own home but understands you can't be a hermit. I have a feeling my gastrointerologist said something to him even though I asked him not to. I know they see each other around the hospital and talk about me. We all have bad days but shouldn't take it out on others, especially as professionals. I taught little kids for years and went through a divorce and the death of a parent. You couldn't pass those things on to them, it's not their fault, they didn't do anything wrong. Teachers always have to be "on." It's almost like performing. Doctors should be the same way. Patients get sicker, they die, it's not your fault or your next patient's fault. Anyway, I'm glad to have him back. Thank you for all your perception into the matter. miocean
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