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Everything posted by miocean

  1. Thanks for all of your thoughts for me. I am doing much better emotionally which is partially due to feeling better physically and the higher dose of steroids I am on. I was even able to clean up a corner of my bedroom where I had been throwing clothes and things for quite a while. Now if I could get the desire and energy to do the rest of the house! My mouth still really hurts me. the bumps have gone away but my teeth seem to be biting and pinching my tongue. It hurts so much I gasp and jump. I went to the dentist yesterday but she didn't see anything wrong. She agreed with my doctor that I should see an Ears, Nose, and Throat specialist so I guess I'll be making another trip to the doctor. I seem to be clenching my teeth and forcing my tongue against the roof of my mouth. It almost feels like my mouth has become too small for my tongue. Is that possible? Could it be caused by stress? I got the okay from Florida for dialysis there. I had to have a TB test to go and it came back negative. That is the first time they required that. So I will be getting some warm weather and some beach time in a couple of weeks. I am a summer girl so I am looking forward to it. I am looking into a portable oxygen concentrator. It will make things a little hectic but that's what the holidays are all about. I am making it easier on myself by getting gift cards instead of shopping, wrapping and shipping things. Thanks for being there for me...
  2. Thanks everyone, your replies really helped. I went to the pulmonologist yesterday. I brought my small O2 container with me but didn't fill it right and ran out before the doctor saw me. My pulse ox without it was 95 which was good. He looked at my chest xrays and said they didn't look too bad but just in case there is some pneumonia he put me on an antibiotic for 5 days. He also increased my steroid to 10 mg for one week and then it declines every week by two mg until I am down to 2 mg which is what I am on now. I am due for my yearly CAT scan in December so I will get that done and then I see him again in January. I am feeling in better spirits after hearing from all of you and seeing the doctor. The sun is shining today so I am going to do some shopping and go out to lunch with my husband before dialysis. My mouth is still sore but that I can deal with. Thanks again!
  3. It is hard for me to write this. I am usually good at maintaining an upbeat attitude but the last week has been really rough on me. I hate to complain about things but here I go... I got a sore throat and went on antibiotics for it. Didn't do any good and then my mouth broke out in bumps and was really sore. Back to the doctor who took cultures and a chest x-ray. All came back negative. I had trouble breathing. I have interstitial lung disease (ILD) and am supposed to be on oxygen (O2) when I exert myself but over the last few months have felt like I haven't needed it. However, last week I used it 24/7.I am going to the pulmonologist tomorrow but am worried that he will put me on it all the time. I am on antidepressants but have been really down. I find myself just sitting and staring into space. I haven't been able to do any thing and things are piling up. I sleep a lot. I am not scheduled to go to the psychiatrist for a couple of weeks. I have had diffuse sclero since 2004 and have been on dialysis all that time. I should be called for a kidney transplant within the next year. I just finished updating all my tests and everything came out fine except a stress echo on my heart so I probably have to go back to the cardiologist. I am so sick of going to doctors. That's all I do, that and dialysis. My husband is really supportive and has taken on the burden of a lot of things. He doesn't complain but I am afraid he might start to resent me. We are supposed to go to Florida for a week in December if I can get dialysis down there. I hope I'm not on O2 because that causes a whole new set of problems. Well, thanks for listening. Any advice/encouragement you can give me will be much appreciated.
  4. I did not lose my sense of taste so I cannot give you any advice on that. I am incredibly thirsty all the time and am supposed to limit my fluids to 32 oz. per day. I am almost always over. One encouraging thing...with sclero renal crises the kidneys can come back. My dr. knows someone whose kidneys came back after 3 years! Unfortunately that wasn't the case with me and mine are all shriveled up now. I wish you better luck. miocean
  5. Georgieoz, I too am not a candidate for a graft or fistula due to my vascular system. I have a catheter. It works pretty good, I have to replace it every once in a while but the one I have now has been in over two years and is still working so that is good. My scleroderma specialist says that sclero patients are good candidates for transplants and the it rarely affects a second kidney. You should check into this again. I don't know if you are in the states or not. I am in NJ and see Dr. Hsu at Robert Wood Johnson in New Brunswick. Best wishes, miocean
  6. I have experienced renal failure, too. I was just diagnosed with sclero five years ago when I became very sick, vomiting, weakness, foamy urine and high blood pressure. I thought too it was just a virus. I had some blood work done and the dr. wasn't happy with my kidney levels so I was admitted to the hospital. The next morning they brought me down for a CAT scan and I stopped breathing and my heart stopped. When I came to in intensive care I was intubated and my kidneys had failed. I started hemo dialysis then and have been going three times a week for five years. I am on the machine for 3 1/2 hrs. at a time. I am on three lists for cadaver kidneys. I had several friends and family members offer me kidneys but for one reason or another they didn't work out. The wait for a cadaver kidney is between 4-5 years. I am coming to the final months, should be called within the next year. I would suggest getting on a list or two. You can register once in a state but can register in as many states as you want. You have to go through a lot of testing yearly to stay qualified. If I can help you with any questions let me know. It is such a bummer to be on dialysis, I really sympathize with you. Good luck and stay as healthy as you can. Miocean
  7. Doodlehead, one of the first things I noticed when I came down with diffuse sclero was that scars that had previously faded became very visible again. It is interesting that you brought this up. I was a guest at a symposium for pre-med students and the curl in my hands was pointed out. They asked me if there was anything else and I mentioned the scars but the director didn't seem to make much of it. miocean
  8. When I was first hospitalized with kidney failure and a diagnosis of scleroderma I noticed that my hands would shake, especially when eating. That was five years ago and I am still shaking. At first I attributed it to weakness but it had gone on too long. My legs shake also when doing certain stretches. I went to a neurologist to find out what it was, with a concern that it might be Parkinson's disease. She ruled that out and said I had postural tremors. I see her again in a couple of weeks. She told me she could give me meds for this but that I am on so many already she hated to add to it My questions is has anyone else experienced the shaking or is this a totally separate problem in relation to scleroderma? Please let me know. Thanks!
  9. Rachel, You mentioned that your mother has renal failure. I have kidney failure also and am on the renal diet. I have to limit my fluid intake to 32 oz. per day, I am usually over, that is so hard to do. I can't have things high in potassium which are bananas, oranges, tomatoes, chocolate and broccoli. I however, have had them in small amounts infrequently. I have to watch phosphorus. That means I have to limit dairy products like yogurt, milk, and ice cream and fruit. (I don't use milk, I use a non-dairy creamer instead). That makes it very hard to make a smoothie. Of course, if your mother isn't eating anything, that would make a difference. Anything she could get down would be better than nothing and she would probably eat so little of it it wouldn't affect her diet. If anybody has suggestions as to make a smoothie following my diet restrictions I'd appreciate it. Good luck with your mom! miocean
  10. I am a 56 year old woman and have had sclero for five years now. I have kidney failure and am on dialysis. When I asked my doctor about a stem cell study, she said I wouldn't qualify because of the kidney disease. I think it had to do with the medications involved. Sorry to put a damper on things. I would still research it and see if it is possible.
  11. Hi everyone! I have a question about shaking and tremors. Every since I was diagnosed with sclero five years ago I have had trouble with shaking hands and tremors. Even my legs shake when I am doing exercises. At first I thought it was due to weakness but it has been going on too long. I am going to a neurologist on Tuesday. I haven't seen her in five years but she was instrumental in diagnosing sclero. She is a great doctor, one who is very accessible. I am wondering whether the shaking is sclero related or something else. Anyone else with this problem? If you know of any related links let me know. Thank you! miocean
  12. I had my evaluation with the oxygen company today and they did qualify me for the smaller Helios unit. Bad news is she told me I need to be on it 24/7 and not just when I exert myself. It will take some getting used to. I am wondering how I am going to go to the beach in the summer and how to travel and go places with it. Any advice or info would be appreciated. miocean
  13. Well I had a PFT test done last month that showed my levels had declined so I had a CAT scan done (no change from last one) and did a 6 minute walk test. It turned out to be a 4.5 minute test as it was stopped because my saturation dropped to 85. So I have to go on oxygen when I exert myself. I have Interstitial Lung Disease. When I was first diagnosed with sclero I was on O2 24/7 for four months. Then I guess my levels improved to where I didn't need it. Now, four years later, I'm back on it as of today. I have a portable tank of liquid O2 that I fill up from a big tank but it is heavy and bulky. They are coming out tomorrow to evaluate me for a smaller tank. It is called a Helios and I had one the last time. I am supposed to use it when I go to the gym but I know I will feel foolish carrying it around with me. For those of you on O2, how to you manage situations? Do you have any suggestions for me on how to deal with the equipment? Anything would be helpful. Thanks a lot and I hope you are all doing well. miocean
  14. I just found out today that I have a blockage in my heart. I had a nuclear stress test last week and it showed up in that. I have to have a heart catherization. Have you had this procedure? What can I expect? Do you think it is sclero related? Thanks in advance for your help.
  15. I don't have a port but am a really hard stick. As a matter of fact, I have to go today to have blood drawn and I am dreading it. I am on dialysis and have a catheter so usually they pull the blood from there but they can't for this particular test. I am waiting for a kidney transplant and know I will have to have blood drawn on a regular basis afterwards so a port is a consideration. When you have a port can you shower? Can you swim? These are activities I have restrictions on now because of my catheter. Do you have any kind of restrictions? Any input would be appreciated.
  16. Birdman, I love gas. Unfortunately my dentist doesn't use it. It makes you feel very relaxed and will put a smile on your face. I don't know how much it will help the gagging though. I have a very bad gag reflex. I just had a root canal on a back molar and it was difficult. One thing that helped was lifting my legs in the air. I know it sounds odd, but it worked. I found that info here on the board. There was a post about gagging and a link to all sorts of solutions. Maybe you can search for it or a moderator can lead you to it. Good luck, going to the dentist is no fun, especially with our small sclero mouths!
  17. I treat myself by spending time with my husband. We go to the beach every weekend and on Tuesdays which we both have "off." He doesn't work on Tuesdays and I don't have any therapies or dialysis then. I also get a manicure every week and a pedicure every three weeks, as well as a massage once a week. (Feeling more spoiled than Sweet!) I also have a DVD player that I bring to dialysis with me and watch a movie during my treatment. It makes the time go faster. I also try my best to take in life's little pleasures. Finding a shell or piece of sea glass, being able to go for a walk, talking with a friend.
  18. Don't worry about the test. It is non-invasive and takes about 20 minutes. You are with a tech who uses a computer to measure your oxygen levels as you inhale and exhale through a machine. The hardest part for me was getting my mouth to go over the breathing mouthpiece. I have a small mouth so I had to stretch it pretty far. You will be given instructions by the tech as to how to breath. Then they give you an inhaler with albuteral and you repeat some of the tests. You shouldn't have caffeine the day of the test because of the abuteral. Good luck and I hope your test goes well for you!
  19. Peanut, I'm sure being in ICU is difficult for you. You are in my thoughts and I hope the stem cell transplant works for you. Looking forward to seeing you on the board again soon. miocean
  20. Ryan, Thanks for letting us know about your mother. Truman, Hope you are doing better. The hospital is not a fun place to be and I hope you don'g have to stay too long. Best wishes for a healthier you! Miocean
  21. I joined a group of 10 women who are interested in having fun and doing things for charities. We took a limo into NY city to see Spamalot and went out to dinner. They are currently planning another trip. It is a group of really nice people and I need the socialization. I also get together with friends from high school and college. Every once in a while I see the girls I used to work with. It is hard meeting and making new friends.
  22. I go to both OT and PT. I go 2x's a week for each and have been for about 3 years. OT works mainly with the hands. I start out with a parafin dip and heat, then do excersizes with putty. Then I work on upper body machines. After I am through with my routine my therapist stretches my hands. That hurts because he makes them go beyond what they are used to doing. When I am done it feels really good, though. In PT she works mainly wit my arms and legs. I do some stretching exercizes with the ball. There are some things I do on machines. She spends a lot of time stretching me. I am fortunate that I have such caring therapists who spend so much time with me individually. It is my understanding that OT works mainly with the hands and sometimes the elbows and the PT takes care of the rest of the body.
  23. Barbara, I enjoy your blogs as well. I am always glad to see a new one. You are able to see your life in such a humorous way. I have a mind image of your home and all your animals from the vivid way you have described them. Keep them coming! And thank you.
  24. I am right handed and fortunately my left hand is affected more. I can just about make a fist with my right hand but my left closes about half way.
  25. I can only echo what everyone else has already said. Sherrill was extremely helpful to me when I first joined the board. She wrote to me at length about kidney failure and made me feel less alone. I was dismayed to hear about her death. She was such an inspiration and so full of spirit. We will all miss her.
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