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Everything posted by miocean

  1. miocean

    Splints, again!

    Yes, Buttons, I have trouble picking up things. Fortunately it is my opposing hand so I don't use it anymore. It sounds like we are having the same issue with the same joint. I do like the neoprene splint, with long sleeves or a jacket you can hardly see it. If it was summer and I was at the beach it would probably be home! miocean
  2. Itchy skin is very common, again, there are many posts on Itching . My humidifier has gone the way of donation, we found it was putting a white powder on everything, even a floor below it. It did help, though. I can't tell you how many different lotions I tried for it, I am still finding jars and throwing them out as I finally get around to cleaning up/out the place. I have found that if I search for something on the site it is better to do an Advanced search. I found this one because I knew I posted and searched under "Itchy" and posted by miocean. I don't itch any more, it stopped after a few years. I really did overdo it in a hot tub. This is gross, but my skin was so dry that when I emptied the tub, the bottom would be covered with skin particles, which my husband would have to clean out because I couldn't bend to do it. When I was first diagnosed, the dermatologist I was going to said "I just don't know what I can do to help you." I told her if she could just stop the itchiness, I'd be happy. She told me to soak in a lukewarm tub for 45 minutes, then moisturize. This led to long, hot baths, as in the post. Once again, good ole me not following the directions. miocean
  3. miocean

    I'm happy today because....

    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
  4. 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
  5. miocean

    No one knows what causes scleroderma?

    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
  6. miocean

    No one knows what causes scleroderma?

    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
  7. miocean

    I'm happy today because....

    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
  8. miocean

    Losing Weight, results :)

    :happy-day: Susieq :happy-day: Keep up the good work! miocean
  9. miocean

    I'm happy today because....

    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
  10. miocean

    A Cold or A Flare up

    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
  11. miocean

    New Support Specialist Jo Frowde (Joelf)

    Joelf, Welcome and thanks for adding your talents! miocean :happy-day:
  12. miocean

    I'm happy today because....

    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
  13. miocean

    Sharing my trip

    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
  14. miocean

    Crumbling tooth

    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
  15. miocean

    Restless Leg Syndrome

    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
  16. 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
  17. miocean

    Images of Scleroderma

    Those are my hands and my face, too. I thought diffuse scleroderma was bad but the pictures of morphea were disturbing. miocean
  18. miocean

    Bon hiver! (What makes you happy in winter?)

    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
  19. miocean

    News about transplant

    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
  20. miocean

    Adopting with Scleroderma diagnosis

    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
  21. miocean

    Hair loss, help!

    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
  22. Well, we all celebrate for different reasons. Today is the 6 year anniversary of my "death day." On September 29, 2004 I suffered my scleroderma crisis, coded blue twice, and went into chronic renal failure. This was after feeling sick since February so diffuse scleroderma came on me extremely suddenly and changed my life forever. Thankfully, I was in the hospital when this happened or I would have died at home. It's been an "interesting" six years with many changes in lifestyle. After reading the internet I truly believed I would be dead in five years. I found this forum and realized that many survive for years and there was hope. And Amanda kept on encouraging me with "there is life after scleroderma." Forward to 2010. I am almost 7 months post-kidney transplant and am doing very well! I am off oxygen, off anti-depressants, and best of all, have kidney function. I still have scleroderma and always will and things will change as time goes on. Some changes for now: I had a PFT today at my scleroderma doctor's medical center as per her request. I walked into the room and saw a very different machine than at my pulmonologist. I asked "where is the black bag?" and was told they haven't used a machine like that for 3 years. It made my doctor's look like an antique. I don't know whether it was the machine or me but my numbers improved since my last test! I have interstitial lung disease but it doesn't seem to have progressed over the years. I have decided to have my annual CT scan at the same hospital. When I was first diagnosed, my sclero doctor required me to have them there and read by a certain radiologist, but I have been doing them locally over the past several years. Not anything about small town medical facilities, but the six-minute walk test I had done locally in 2009 was done all wrong. Based on the findings of the echo my doctor will determine whether I have to get another heart catheterization. Again, the first one I had was done locally and the doctor did a left heart cath which doesn't give the needed info and the one I had in January (locally but at a different hospital) was a right and left heart cath but still didn't give my specialist all the info she needs so I will have it done at her hospital. I also had an echo at the hospital today. I was not a good patient. Apparently, the requirements have changed and more pictures have to be taken so the test is now 30-40 minutes. Mine took an hour! The room was cold even with blankets, I had the yawns and had trouble laying still and you can't move so things had to be repeated. If there is anything major wrong the doctor will be notified immediately, if not she will send me the results in a week or so. My visit with my scleroderma doctor went very well. She was amazed at the difference in me, even since she saw me in June. She said to my husband, "Look at her!" My skin score went from 11 to 8, I started at 45! I have some tightness around my ankles and feet but I was hard as a rock all over 6 years ago. She deleted depression and renal failure off my chart! I don't have to see her for 6 months! She wants me to return to Physical Therapy for tightness in my shoulders, and Occupational Therapy for my hands for a month. I will have to get this approved by my nephrologist because of the use of the facilities by multiple people and their germs and my weakened immune system and hope he says it's okay because I love my therapists. She said just shower when you come home. I have come to the conclusion that germs are everywhere, things are always being brought to my attention like, did you know, restaurant menus are full of germs because they are never wiped off and you should never let the waitress put them on your silverware? I can't tell you how many pills I have dropped on the ground because of my bad hands and still taken! So I have had plenty of germs. The calcinosis on my buttocks is another issue I deal with. My nephrologist says no surgery for a year so I sit on pillows and carry around a portable gel cushion. My dermatologist told me she could remove them in her office, but when I saw her Practitioner last week she said they are so widespread I might have to go to a general surgeon. If they removed them all I would probably need a skin graft, which my scleroderma specialist said would be extremely difficult for me to heal from and I don't want one. If I can have the one really painful one removed I'll deal with the discomfort of the others. So I'll deal. She was happy to hear I was involved in things again and was interested in the dream granting non-profit I am involved with. I told her I was now the e-Newsletter Manager for the International Scleroderma Network and she was happy to hear that. She was familiar with the Network. So today I celebrate the bad and the good. Celebrate what you can, enjoy the little things, keep hope in your heart. Always remember the friends and family in your life are the most precious gift you will receive and treasure them. Thank you for being there for me and I rejoice in knowing you always will be there for me and others. With gratitude, miocean
  23. 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
  24. 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
  25. miocean

    CT Myelogram test

    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