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Everything posted by miocean

  1. I hope they do find some help for this terrible disease, a cure would be wonderful, something to stop the progression, a better understanding of how it affects the body systems, anything to keep others in the future from going through what we all have. miocean
  2. Hello LCT2007, Of course you are worried, that is normal. However, everything Shelley wrote is spot on. You can scare yourself into having a disease by reading about it on the internet. I hope you will get back to us with the information you receive from the rheumatologist. Since it does sound like your daughter has Raynaud's do some things for that before thinking the worse case scenario. The best thing for Raynaud's is keeping the core warm. For me that means dressing in layers, always having gloves on hand, even fingerless ones for inside, drinking warm beverages and exercising. Warm baths and keeping the house temperature warm help as well. I think I finally have convinced my husband that I need the house set at 72 degrees in the winter although sometimes I still find he will put it at 71 and I can tell the one degree difference! Summer can be even more difficult with inside temperatures due to air conditioning. I hope you get answers this week from the doctor. miocean
  3. I saw my pulmonary hypertension specialist this week and had an Echo. She called me and told me it was... :emoticons-line-dance: Fabulous!! :emoticons-line-dance: It was better than the last one, which was better than the base line. I have a trace amount of fluid but nothing to be concerned about. My heart shape looks good. I am having a right heart catherization via the neck next week. I have always had them through the groin so this will be a new experience. If the RHC shows normal pressures she is thinking about taking me off the medication for PH instead of adding another medication! That leaves a mystery to solve as to why the increased shortness of breath. I am hoping I now have the right doctors to figure it out. I do have some improvement now that I am sleeping with oxygen and back to exercising. In the meantime I am off to some different beaches and sunshine. Today is the first day of spring and it is snowing here! miocean
  4. I am happy today because I am celebrating the 5th anniversary of the gift of life from my unknown kidney donor! miocean
  5. Due to a decline in my pulmonary function and a horrible 6 Minute Walk test my scleroderma specialist referred me to a new pulmonologist. She was hoping I could be put on a new drug for Idiopathic Pulmonary Hypertension, Perfinidone, but that is currently in trial for scleroderma and won't be prescribed. I am hopeful that this new doctor will be the right fit; I liked her and she is knowledgeable in ILD, pulmonary fibrosis, scleroderma and transplants. She is going to review all of my CT scans and my tests. Although I made arrangements for her to have everything by my appointment of course she didn't get them (they went into archives instead of my file but I had everything with me). I have an appointment with my PH specialist in a couple of weeks, followed by a right heart cath, and her thoughts are that another medication will need to be added to the Adcirca I currently take for PH. I now have to use O2 while sleeping as well as exertion. At the end of my appointment the doctor said she was excited about working with me, that she hates it when they send her someone who only has asthma. She said the fact that I am on anti-rejection medications that are also known to help fibrosis along with my complicated medical conditions makes me a challenge. She would like to get her other patients on the anti-rejection meds but they won't be approved. My final judgement is still out because I have felt that way about doctors before only to be let down. My CT scan was about the same as the last time when my lungs started to honeycomb. That is when I started the process for lung transplantation but discovered I am not a candidate. The major difference is that for the first time there is no ground glass on the scan. I questioned that and was told ground glass is how inflammation turns up on film so my lungs are no longer inflamed. This might be due to the anti-rejection meds. I still have end stage lung disease. My 6 Minute Walk Test was horrible. I desaturated quickly and never felt like I was getting any oxygen. I can always tell when the O2 is turned on and just didn't feel it. I walked 200 feet less than last time. I started out at 97% on room air. After 43 seconds I went down to 88%. According to the results they gave me 2 liters of O2 and I went down to 87%. They increased to 4L and I went up to 89% and then they increased to 6L and I went down to 87%. When I finally saw the numbers I truly believed that the O2 was not connected correctly so I am having a retest in June. This just doesn't seem right to me as I always come up with O2. Sleeping with oxygen seems to be helping and isn't too bad. I have started exercising again. I will keep you posted as to what happens with the PH Specialist and further testing. miocean
  6. Sweet, That is what I received but I found it difficult to fill out. It asked for the doctors I had seen over the past couple of years and gave me three spaces. I see that many doctors in a month! So this is what I did: I contacted all of my doctors and asked them for my visits for the time period asked for. When I received the pages and pages I blocked out personal info and made 2 copies of it, one to send SS and one for me. I wrote a cover letter explaining how difficult it was for me to fill out the form and sent it all in a manila envelope, signature required so I would know they received it. I decided to let them see what it was like to wade through all that data. A few months later I received a letter saying I was able to continue my benefits. I probably overdid it but I wanted them to know exactly what my life was like, especially since I had the kidney transplant and many can go back to work after. Best of luck and I am sure things will work out. Just be thorough. miocean
  7. :emoticon-hug: :emoticon-hug: :emoticon-hug: Hi Gareth! :emoticon-hug: :emoticon-hug: :emoticon-hug: Hi Margaret, Thanks for letting us now how Gareth is doing. He knows we all care about him and hope he gets some relief from the procedure. Love, miocean
  8. Happy Birthday ISN!! Party Time! :emoticons-line-dance: I'll bring the cake and the spoons. miocean
  9. The test will be rescheduled, but I don't know when. It must not be too important if my doctor isn't pressing for it to be done immediately. I had a response from my scleroderma doctor about my PFT's. Since the numbers went down she wants me to have a CT scan. She is "trying to find" the 6 Minute Walk Test. miocean
  10. Judy and Buttons, I think the way our GI systems don't work with scleroderma has a lot to do with poor preps for colonoscopies. Last year I had one and for the first time I wasn't cleaned out all the way. I couldn't understand it because I was eliminating clear fluids most of the night but then the next morning had some yellow. Because of this I had a repeat one about 6 months later but my doctor started the prep with dietary changes and laxatives several days before. I was cleaned out that time. Due to my pulmonary hypertension I was under light sedation for the last colonoscopy and there were times I could feel it and told them. I was totally aware of my first colonoscopy and watched it on the monitor but didn't feel a thing. I had another colonoscopy when I was on dialysis and I threw up a lot of the prep. I was really concerned that I wouldn't be clean out but I was. I have a friend with none of our health issues who recently had one and she said she was sore for a couple of days when she got home. It might be a good idea for us sclerodermians to mention motility issues to GI doctors if they prescribe colonoscopies to insure we are cleaned out, the test is a good test, and doesn't have to be repeated. I'm sorry you both had to go through this miocean
  11. I was scheduled for a secretion selection test yesterday by my GI doctor due to high gastric serum levels and an elevated CEA. I have never had colon cancer and my nephrologist has questioned why she is using a CEA test as it is not a diagnostic tool. My GI doctor said the test is for benign tumors than can turn malignant and since it is just an injection of the hormone into you and subsequent blood draws I agreed to the test. To make a long story short, I spoke with the both scheduling department and the doctor the day before the procedure. I showed up at the hospital in the morning. It took two tries to get the IV in. Two and a half hours later I was told the drug for the test was coming from the pharmacy, then doctor came and questioned why the test hadn't been started, returned to say the pharmacy was mixing the medicine, and then showed up and said, "You won''t believe it." I looked at her and said, "They don't have the medicine." Bingo. She was very frustrated but had to go on to her other patients who were there for tests and told them to bring me a breakfast tray. I am amazed at how calm I stayed. I am so used to things going wrong and therapy really does help! I asked to see the manager as I did not want to get billed for anything and was told she was going down to billing to make sure. They brought me a breakfast tray with a bagel, banana and coffee and I asked if I ate it would I be charged $5,000. :D I then requested to see the manger herself, got her card so I have her name and went home. In the meanwhile, I had my pulmonary tests at my scleroderma hospital 10 days ago and still haven't heard from my doctor even though they told me she would have the results in a few days. I am concerned because I desaturated on the 6 minute walk test very quickly, where usually it is in the 3-4 minute mark and I have been shorter of breath. I have an email in to the doctor. Keep in mind I live in a part of the U.S. where there are good medical centers. I can't imagine living where you don't have access to them if this is what I encounter here. Another chapter in 'How I Fell Prey To The Medical Machine And How It Killed Me." miocean
  12. Hi hopeforhope, I am sorry to hear about your sister's diagnosis but am glad you are there to support her. What kind of scleroderma has she been diagnosed with? I was on Singuliar a long time ago. I looked up the correlation of the drug and scleroderma and read that of over 41,000 people who have taken it, 35 have developed scleroderma. This is interesting and I hope they investigate it further. miocean
  13. Congratulations, Jo!!! Seems to me you could barely use a computer when you started. What a great accomplishment. Thank you for all you do! Miocean
  14. Happy New Year All! May 2015 bring us closer to a cure for scleroderma and all diseases. miocean
  15. Dear Honeybee, We haven't really had snow in the Northeast yet this year so don't be disappointed if you don't see any in the Virginia/DC area. Take a trip to Vermont if snow is on your bucket list. There is something very magical about snow. Especially if you are sitting inside, nice and warm, watching it fall and you don't have to go anywhere! Today winter is not so beautiful here, grey and rainy. Last year this date was the coldest day of the entire year, it is currently a mild 60 degrees so you never know. Right now the only thing that gives me hope is I will be heading for my favorite vacation spot soon and will be sitting on the sand in the sun. I get nervous about going even though we have been there many times. With my sensitive GI system I have enough problems here, yet alone traveling. Half of our carry on will be medicines and my portable oxygen converter will be along for the trip. Thinking of you basking in the warm sunshine, miocean
  16. Dear Quiltfairy, Quitting an addiction is not easy and is ever on going. I stopped smoking in 1977 only to pick it up again from '85-87 after my divorce because my friends were smokers. The best advice is to not smoke ever again. Whenever I go to the doctor and they ask my smoking history I could have been able to say I quit in '77 if it wasn't for those two years. A good friend of ours quit last year and for almost the entire year he was difficult to live with, according to his live in girlfriend. He is doing great now so just keep shredding fabric, who knows, you might come up with an interesting art form! Best wishes to you and we are all pulling for you and doing a happy dance. miocean
  17. Thanks. I thought it was my computer. miocean
  18. Hi Honeybee, One thing you may have trouble dealing with, more than the cold, is the lack of sunshine. On this grey, cold day your warm temperature sounds wonderful. Want to switch places? On the other hand, yesterday was so beautiful I went up to the beach for a little while and opened the sun roof on my car. I actually wish it snowed more...if it is going to be cold it might as well be pretty. miocean
  19. When I was searching for a diagnosis I had two doctors who thought I had scleroderma but my general practitioner kept on saying I didn't. No one suggested running an ANA panel. It was during a visit to a neurologist to rule out multiple sclerosis that I asked her to run it and when it came back positive was referred to a rheumatologist who gave me the diagnosis based on the ANA and my symptoms. I was then able to see a scleroderma specialist. I am hoping you don't have scleroderma but doctors can be wrong and scleroderma is hard to diagnose. Keep on looking for answers and let us know. miocean
  20. Dear Honeybee, I live in the Northeastern United States and know you would be fine here as long as you take proper precautions. Layered clothing is a must. Once the temperature gets in the 40's here (around 4 Celsius) out comes the long underwear, hats, gloves and scarves. Investing in proper winter gear is a good investment. The stores here will have all the things you need. When you go inside you just start to take off the layers. I have a harder time in the summer when places have their air conditioning on and I get cold inside. Weather is unpredictable and there will be an occasional major snow storm. Power outages can occur and the best thing is to have a generator or a wood fire source like a stove or fireplace. We have none of those and have never had a problem in the winter. After a major hurricane in October we didn't have power for a week, the temperature dropped into the 20's and it snowed. We stayed warm by wearing outside clothes while inside. Some towns have better resources for snow clean up than others but streets are usually plowed within couple of days at most. It is very unusual for everything to come to a standstill for long periods of time. After the hurricane we had crews from all over the U. S. in our area restoring power. One of the things that helps me are disposable hand and foot warmers. These are available at stores in the winter. There are many here dealing with Raynaud's and although winter might not be our favorite season, it is be beautiful and refreshing. It depends on where you are living as to whether you will need a car or not. Big cities like New York and Washington D.C. will have mass transit but otherwise you need your own transportation. My philosophy is to do what you want to do while you can. If you want any more advice once you finalize your plans, please feel free to message me. miocean
  21. I itched for years. Nothing helped. My skin was so hard lotions would just roll of it instead of being absorbed. I kept backscratchers everywhere. I felt like I had fleas! The itching went away when my skin started to soften. miocean
  22. When my skin began to tighten it hurt. Anything that touched it hurt. At its height I was hard all over and my skin got really dark. Interestingly, my mother who was never diagnosed with scleroderma but had several symptoms that I am now aware of went through a period where the palms of her hands turned bright red and burned. She would soak them in ice water to relieve the pain. Her mother's feet would turn blue, which we said was poor circulation back when I was a kid. That side of the family is full of autoimmune disease, mostly lupus. I am the only one diagnosed with scleroderma. miocean
  23. My ANA at the time of diagnosis was speckled. I also had many of the symptoms but it was the ANA test that got me the definitive diagnosis. miocean
  24. Shelley, no one ever said anything about Vitamin D and recently, since my level was low I was put on Vitamin D3 1,000 mg and then raised to 2,000 mg. I don't know if it correlates but there is an increase in the calcinosis recently. I am not on any blood thinners nor have I had my vitamin K levels checked. I know that dialysis can cause calcinosis but it is getting worse and I am not on dialysis, thankfully. Jo, I bought a cushion to sit on but it puts the pressure right on the areas that hurt the most so it doesn't work. I am usually ok on a soft surface, hard wood chairs are killers. I would need to carry around a huge inner tube I am going to check with my doctors about my Vitamin D. My level was 31, the low normal is 30. miocean
  25. I never qualified for any trials due to the renal failure. However, I am participating in two studies, one on pulmonary hypertension in scleroderma (PHAROS) and the other on calcinosis in scleroderma. I am hoping it will help someone somewhere sometime. I had a follow up with the PHAROS Study this week. It involved filling out a questionnaire again. This is done approximately every 6 months. I found out I am one of 37 patients in the study under my doctor. It is a national study and there are many other doctors participating. I was told there are two more years for it. I hope this study helps find answers to pulmonary hypertension in scleroderma patients. miocean
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