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Everything posted by miocean

  1. I had hand cramping while on dialysis. Toward the end of treatment my thumbs would fold inward and my index fingers would bend tightly. It was very painful. Sometime, during the course of the day the same thing would happen. The only thing I could do was straighten them out, not easy, and hope the pain would go away. One morning it happened in Occupational Therapy and I was able to show my therapist but he didn't have an answer for it, just figured it was from dialysis the night before. I thought it had to do with the potassium in my body.
  2. First of all, I want to enjoy every day that's left of the summer at the beach. It goes by so fast, even as brutally hot as it was where I live this summer. I am now shopping for fall clothes. I've decided I LOVE sweatshirts better than sweaters and everything I had was so old and now is too big that I have picked up a couple of new ones. I am also buying long pants and jeans. I don't know if you remember, but I cleaned out my closets and drawers after my transplant and got rid of everything that didn't fit, now I am even smaller so I am sorry that I got rid of some things. Of course, they changed the styles of pants so skinny is in and I love my bell bottoms. Getting some straight legged jeans, I just can't wear the really tight ones. I have a bunch of warm, cozy blankets because the dialysis unit was so cold so I am all set with that. I will be looking for a pair of black leather gloves, mine are so old they have holes in them but they are so warm I hate to give them up. I want to get together with all my teacher friends who get too busy during the school year. Summer just doesn't last enough! miocean
  3. For the past few weeks my legs have ached me. They hurt whether I am sitting or laying down. They are a little better if I an walking, which I do very slowly. I am more active since the transplant where before it I sat around most of the time. I am not doing that much now, just trying to walk short distances. It began with my legs hurting in the late afternoon but now is almost all the time. I don't know if it is the increase in activity, scleroderma, or perhaps even restless leg syndrome. I have been taking Tylenol, the only OTC drug I can take without permission from my doctor. I don 't even know which doctor to see about it. All meds have to be approved by the nephrologist, I see the Sclero specialist in September and she is not that responsive by phone And my general practitioner would just give me a prescription that would have to be approved. Any one else with achy legs or R L S? Any advice is appreciated. Thanks. miocean
  4. Do research on the medication and it's side effects so if you do take it as prescribed you will know what to expect. Just remember, they will tell you EVERY side effect and many are rare. Bring the info with you so if you do get side effects and have to seek medical help it will be available. Your vacation sounds wonderful. I live at the beach and am fortunate to be able to enjoy it almost every day in the summer but I have always dreamed of going to Paris. Maybe someday. Enjoy your trip! miocean
  5. KSA, I am not familiar with morphea as I have diffuse scleroderma but I can tell you that most of us have gone through what you are experiencing. The internet will scare you to death reading about the disease and treatments. Doctors are unfamiliar with the disease. This site is the best resource for accurate information. Not only does it provide a wealth of information on many subjects, the forum members can offer good advice having dealt with the disease themselves. You have already received good advice and links and I second all that has been said. I wish you the best in finding the help you need. miocean
  6. Thank you to the Sclero forum for posting this and to all my forum friends. I've said this before and I'll probably say it many times again, but I don't know what I would do without you. I've asked my sclero dr. about children with it and she said it is rare in children yet I read posts from parents about their children. I have looked for pediatric dialysis patients in this area but haven't found any yet. I guess that is a good thing. I just know how hard both things are and can't imagine going through it as a child. We have our first dream child now. She is 17 and when she was 12 got a tumor on her elbow. She just had her 8th surgery on it, fortunately it is benign. She wants to meet the Jonas Brothers. Her mother already bought tickets for her and two friends so we are getting them a limo, buying her a new outfit, and somehow are getting them to meet with her. They are from this area and do a lot for charity so we have high hopes of it all coming together. It's so nice to have a purpose once again. miocean
  7. Well, it's 12:30 a.m. and I'm on the computer because I was just laying in bed. I know it's a combination of meds and iced coffee. I wake up exhausted in the a.m. because I am up so much with my kidney. But this is better than sleeping all the time like I did on dialysis. I took sleep medication for a while, and sometimes take anti-anxiety meeds before I go to bed but I still take a while to fall asleep. I have more energy now than I did before but wish I could sleep like my husband. He lays down and is out in seconds! miocean
  8. It's interesting to watch procedures sometimes. Years ago I had sinus problems and the ENT sent a camera up my nose and I watched it on the T.V. I had polyps and they looked like bunches of grapes inside me. Surgery removed them and I haven't had a sinus infection since. When I had my first colonoscopy I didn't quite go to sleep. I didn't feel anything and didn't have my contacts in so couldn't see that great but saw the inside of my colon. When the doctor said he was going to take a biopsy, I could see the pincher thing go out and back. For the other ones I was out like a light. For my first heart cath I watched on a screen and saw the camera or whatever it was go through my veins to my heart. I always watch when they draw blood, want to see it go in the tube. But then my husband passes out if he sees a needle! miocean
  9. I have diffuse sclero. One of the first things I noticed when I started feeling ill was when I ran my lungs would hurt, not my legs, which I thought was odd. I have had ILD for 6 years and PH since Jan. 2010. I plan on living much longer than the two to three years prognosis. Fortunately, my lungs have been stable for the past few years, the PH is new. Since my transplant I am breathing better, don't know why it would affect my lungs but I'm not complaining! miocean
  10. As someone whose kidneys failed and was on dialysis 5 1/2 years before a transplant YOU DON'T WANT TO MESS WITH YOUR KIDNEYS!!! I ignored the signs, my doctor's didn't pay as much attention to my creatinine levels as they probably should have and I paid the price. Get to the doctor! Good luck and I hope it ends up to be nothing. miocean
  11. Congratulations Jeannie!!! Thank you for your contributions, may you always maintain the energy to keep up with all the demands you place on yourself. miocean
  12. I hope I'm not boring you with my updates on my transplant. I am doing so well, it gets better everyday. Finally my Prograf levels are where they should be! My White Blood Cell count had dropped very low so my doctor changed the doses of my medications and took me off an antibiotic and it is now almost normal. I only have to go for bloodwork once a week now! Fortunately, the phlebotomists at the hospital are very good, I have only had a couple that haven't been able to get the vein. I thought that the extreme exhaustion I was experiencing on dialysis was scleroderma fatigue. It is definitely better now, however NOW I know what scleroderma fatigue is like. I still get so tired but nothing like before! I am sleeping well at night, my bladder has finally settled down, yet by the afternoon I am very tired and I don't do that much during the day. My husband and I went for a short walk down the boardwalk the other day and I could barely make it back. But at least I am walking now. Little by little. I had been lurking on a transplant forum since mine and today, in celebration of my so far successful one, I joined. The ISN forum has been so helpful to me, and the transplant one gave me so much needed information that I hope I can return the favor on both. It is scary to have a chronic disease that very few people have even heard of and the internet can make it worse. To hear real life experiences makes it so much easier to bear the effects of the disease. Once again, thank you all. And today, as everyday, thank you to my donor and his family for this gift of life. I know more than likely they won't want OUR organs, but please urge all you know to become a donor. Besides having it noted on your driver's license, it is important to notify your loved ones of your wishes as they can override your request. miocean
  13. Sis, Itching seems to be an issue that affects most of us, especially in the early stages. I tried so many different things for it both topical and internal and nothing really helped. Part of my problem is I was taking long, hot baths. Over the 6 years I have had the disease the itching has gone away. I don't take hot baths anymore and my skin has softened which I think has helped. In the beginning my hair fell out, too, but it has grown back. I am now on Prograf which cause hair loss and my brush is full of hair again but it doesn't seem to look thinner. My hairdresser said I have baby fine growth in the back which to her meant hair loss. Wishing you the best. miocean
  14. MicheleM, Sorry to hear you have had such a hard time of it. I never heard of your problem before and hope you have a full recovery. As far as vitamin D, when I was on dialysis my level was low so they gave me it through the dialysis machine. When I saw my Scleroderma specialist last month she said I should be taking between 400 and 800 units a day. I checked with my nephrologist and even though my D level was in the normal range he told me to take 800 units a day. I have been doing so but haven't noticed any effect from it. miocean
  15. I saw my doctor today and he thought I was doing so well he took me off Wellbutrin so I am now not an any anti-depressants. He also said I don't have to see him again unless I feel I need to. One less med is fine with me. I feel so much better since the transplant even though things are not perfect. I am having trouble with my Prograf levels, which could cause rejection, and my white blood cell count is very low, which could cause infection. My doctor is on top of it and adjusted my doses, I am wearing a mask again in public and have to stay out of the ocean for a while. Better safe than sorry. It is nice to find joy in life again! miocean
  16. Honey, I have never had the good fortune of being happy with my body. I was a fat teenager, thinned down a little in my early twenties due to walking the beach a lot and having to cook for myself, went up to 200 lbs. in my 30's, dropped to 140 by working out and running, gained 30 lbs, lost it when diagnosed with scleroderma, gained it again on dialysis for 5 years, lost it over the past six months through illness and a kidney transplant. I am now very happy where my weight is and am determined not to gain again. I weigh myself every day and keep an eye on it because it seems the only way I can lose weight is to get sick and I don't want to do that. However, from all the changes, at 57 I have the saggy skin of a much older woman. My inner arms are wrinkly, my thighs saggy, my stomach wrinkled. I still wear sleeveless tops and shorts and a bathing suit and try not to care about it. I figure I have been through a war and so far have come out winning. I have scleroderma mouth with many vertical lines yet recently people have been commenting about how much younger I look. Count your blessings. I think it is much harder if you had a great body to deal with one that isn't. Accept what is. If you want to put on weight, try milkshakes, cookies, candy and ice cream. It worked for me! Good luck, miocean
  17. Linda, I think you are making a sensible decision. Many wait too long before admitting they need assistance. I hope you will be happy in your new home and that you and your daughter will spend many moments together. I am so sorry to hear of the progression of scleroderma. This disease is just full of surprises. May your shoulder heal quickly. It must have been very scary to be alone and unable to move from the tub. At your new home you will have people taking care of you for a change. Best wishes! miocean
  18. I'm happy again today because for the first time in 6 years I went in the ocean! Before sclero I swam a mile almost everyday, then with the dialysis catheter I couldn't get wet. All I could manage to do was get in and float around a little but it felt marvelous. miocean
  19. It took long enough but I FINALLY have my new iMac. What a difference from my old g4 Cube. I can read the monitor and watch videos and photos now. It is beautiful! It has a few bugs I have to call support for but they will get worked out. I had an independent tech come out to hook up the wireless and I'm glad I did. It took him 3 hours, can't imagine what it would have taken me. He had to do a special connection with my wireless printer to Time Capsule, a back up drive and modem, because the printer is too old for it. He also did some work on my laptop, ends up the reason it was jumping off line so much was it needed a new airport card. He said he would have it for me by the end of the week. It is nice to be up to date again. miocean
  20. Well, it seems your congratulations were in order. I sent my current test result to my pulmonologist and he agreed that I don't need the 02. He said I could keep it in case I needed it but I told him Medicare was paying $350/month for it and I am not using it. We decided to remove it and if I needed it bring it in again. They are coming tomorrow to take it out. miocean
  21. I have had to have many yearly tests, not so much because of diffuse scleroderma, but due to being on lists for a kidney transplant. I have PFTs every six months, CT of the chest yearly, echo yearly, I have been having yearly heart catherizations due to abnormal stress tests and my sclero specialist said she might request another one in the fall to check my PH. Due to the transplant I now have weekly blood work and get a lipid profile every three months. I had to be tested yearly for HIV due to the transplant. Jeannie, What is a BNP level? How is it related to PH? All these letters confuse me. miocean
  22. Yesterday was the third month anniversary of my transplant. The doctor said my kidney is doing very well. I am having trouble with my prograf levels. That is an anti-rejection drug that oddly enough also damages the kidney so it has to be carefully monitored. Thursday my level was 16 and he wants it around 8. My dose has been lowered and we'll see what the blood work on Monday says. Normally I would drop down to blood work once a week at this point but I might have to keep going two times until the prograf levels off. Unfortunately, when the prograf goes up, so does my creatinine so it was 1.3,not too bad but too high. I had a wonderful surprise last night. I thought I was going out to dinner with two couples and when we got to the restaurant and walked in I thought it was very crowded for as early as we were there. The sign said please wait to be seated so I was standing there when my friend said go on in. It ended up that all the people were friends of mine! My husband threw a surprise party for me. I was shocked and felt so stupid! It was a lot of fun and everyone had a good time. I know I've had some good news lately but all is not great in my scleroderma world. A week ago I woke up. stretched my legs and my ankles felt tight. I could barely walk when I got up but they loosened up during the day. It continued to be that way and then my legs got very hard and hurt. They weren't swollen though. I discussed it with the sclero specialist and she said it was scleroderma. I have had very tight skin but it never hurt. In spite of it my skin score went down. My nephrologist felt them and said it wasn't fluid retention so I am trying not to worry. At least they get better during the day. I am not as short of breath as I was but I find myself gulping air, almost like a goldfish in the water. When I lay down I am short of breath which I have read is a symptom of PH. The sclero dr. said we will have to revisit Letairis in the fall and that I might have to have another heart cath. She also asked about my Raynaud's and I said if I get cold my fingers turn blue but they turn back to pink when I warm up. She said I might need meds. for that. I take enough already. It seems the answer is always more drugs. The calcinosis on my buttocks has become even more painful. I have learned to move in a certain way so I don't hit the spot that is so bad. At home I sit on pillows but the hard chairs I encounter out are painful. I finally ordered an inflatable donut. I will feel stupid but maybe I won't be in pain. My dermatologist said when I get the ok she can remove it in her office and she is a great cosmetic surgeon. My nephrologist said in six months I can have surgery and 3 are now passed so I guess it will be Sept. before I get any relief. I tend to divide my life into two phases: before I got sick and after I got sick.. Before I got sick I was an active professional and artist, ran 3-5 miles a couple of times a week and swam a mile in the ocean every day in the summer. After I got sick I did nothing. Well, now that I am feeling better I am getting involved again. I am working with a group of women to start a local chapter of a national non-profit that grants wishes to both critically OR chronically ill children ages 3-18. I am Public Relations Coordinator! It is just getting off the ground but it is exciting to be productive again. If you would like more info about this group you can private message me. I have been inspired by so many of you who deal with this illness but are still engaged in life. While I was on dialysis I would read Amanda's posts about how there is life after scleroderma and I would think what life? I should have died when I stopped breathing and my heart stopped, it would have been better. The only thing that kept me going was the love of my husband and my love for him. Now I understand what she means. I feel so much better, I am much happier and am walking better. Don't ask me how a kidney does those things, I am just glad it happened. I am looking forward to living again and plan to do as much as I can while I can. You never know what will happen. Sorry this is so long. Thank you all for your inspiration and courage. I am very grateful for this forum. miocean
  23. Sam, Wishing you well at your hearing. I hope you are approved this time. I am also glad you didn't suffer too much damage from the tornado. It must have been so frightening. There seems to be so many more natural disasters these days. I live on the coast and always worry about hurricanes when the season comes around. So far we've been lucky. miocean
  24. I never thought that the mistakes could affect insurance and cause legal issues. I'm glad I was able to get hem fixed. How can you get reports from reluctant doctors? miocean
  25. I posted in my six minute walk test post that the scleroderma doctor gave me the wrong report for the test. It is partially the fault of the pulmonary department because they sent her the results from the test done in 2005 but she is the professional and should have checked. I also got a copy of her report from March from my kidney doctor and in it she wrote that I had a failed kidney transplant in 2007!!!! I had her correct that at this last visit. She also said I was on Enbrel which I never was because insurance turned it down. I was going through my test results from the kidney transplant department at the Mayo Clinic in Jacksonville, FL and they said I had a LIVER TRANSPLANT! I have found that some doctors are reluctant to give you reports but I think we must insist. I know there have been many cuts and doctors are short staffed but there really is no excuse. Have you had similar experiences? miocean
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