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Everything posted by miocean

  1. Hello Lynn, I'm sorry you are in so much pain and frustration. I had a painful bump on my big toe for years. I could only wear two pairs of shoes, a pair of sneakers and a pair of black flats that I wore so much the leather wore off! My physical therapist treated it with a cold laser for a long time and eventually the bump went down. I still have trouble with shoes, the least bit of pressure in that spot hurts so much. I love summer because I can wear sandals One thing I have noticed is the soles of my feet have become very sensitive. I used to be able to walk barefoot everywhere and now prefer something, whether it be slippers or sandals, even inside. Hope things ease up soon, miocean
  2. miocean

    Sclero age years

    I was diagnosed 7 years ago and found encouragement on this site when I saw that there were many who had been dealing with the disease for so many years. The internet is a scary place when you look up mortality in scleroderma, and although I feel deeply for all of us who suffer, those of you who made it through so many years gave me hope. miocean
  3. miocean

    Scleroderma skin ulcers

    Hi NorthStarHope, I was thinking about you and was hoping that your absence meant all was going well. I have no experience with ulcers so cannot help, just wanted to say HI! :emoticon-hug: miocean
  4. miocean

    Specialist Appointment

    Dean enjoytheride, Well, you certainly didn't enjoy THAT ride! I would be so frustrated. :temper-tantrum: Do they have a return policy like a department store..they should. When you think of it, it is a very scary medical world out there. You put your trust, life, and money into the hands of "professionals" and they screw up. I know they are human and have a lot of pressure on them between the insurance system today, their patients, and the changes in the medical field but the scheduling department made a big mistake when they scheduled you with that doctor and the doctor should have been upfront and told you she was not the right person to see. :emoticon-bang-head: Thinking of you, miocean
  5. miocean

    All Is Not Well In Sclerodermaland

    I just wanted to let you know I am doing better without the medication. :VeryHappy: In addition to the counseling session Monday and the appointment with the lung specialist at my center June 3rd, I have been able to get an appointment another scleroderma expert for June 10th! :emoticons-yes: Now I just have to gather my medical records. I have copies of all tests from 2010 to now, with the CT Scans from 2008 until now. I will be able to get copies of a few other things I need, I don't think it is necessary to go years back. I haven't kept all my records, when I was on dialysis, they kept all my tests, which had to be done yearly, and would forward them to the transplant centers so the first place I will go is my nephrologist, who has yet to computerize and I know I have 2 files about 4 inches thick there. My primary has things and so does my cardiologist. Do you keep copies of everything? My blood work alone for the past year would be pages. How do you manage your files? I have a friend who kept everything, yet she was unaware of a standard test they run after a kidney transplant (BK virus), 3 years out said it had never been run on her, yet she goes to a center that specializes in that virus. :emoticon-dont-know: Thanks again, miocean
  6. miocean

    All Is Not Well In Sclerodermaland

    Well, I've take all of your advice to heart and here is where I am right now; I have a call and email in for a consultation. I had a PFT test yesterday and was very scared because I thought I might have to go on O2 again as I have been short of breath, but my blood oxygen level was 92%, my total lung capacity is 65% and my diffusion rate is up to 45%. I discussed a second opinion with my local pulmonologist and he suggested I see a lung specialist he knows at my scleroderma center. He personally called him and discussed my case. I just made an appointment for June 3rd! I made an appointment for next week with my counselor. I am holding back from the non-profit that was causing so much stress, still doing my job but not getting overly involved. :thank-you-2: So thank you all, my scleroderma friends and family. :thank-you-2: Now, if all the boxes could be magically unpacked and all the paintings on the walls... miocean
  7. miocean

    Tennis Elbow anyone?

    akchrist Thank you for the information on scleroderma and cortisone. I declined a shot, not because of the scleroderma, but because of the new kidney, even though my doctors said it wouldn't affect it. I am not in that much pain and don't need to add any more medications to my ever-growing list. Feel Better, miocean
  8. miocean

    All Is Not Well In Sclerodermaland

    I am taking everybody's advice. Yesterday we went to the beach and we're going again today. My husband got up early and has been painting. The boxes will still be here. Life will not come to an end because my house is a mess. I don't have to do everything at once. I do no have to be perfect. :emoticons-group-hug: See, I'm doing better, and no meds! :emoticons-group-hug: I think I will seek a second opinion. I've been considering it for a while now. Just which doctor is the question now. Thanks and off to the beach I go! miocean
  9. miocean

    All Is Not Well In Sclerodermaland

    Thanks for your quick replies. You are the best! I just hung up with the nurse at my scleroderma doctor. She want my most recent labs, which is no problem since I have blood work every two weeks, so I will fax them over. They have put me on the cancellation list and I am waiting to find out what she wants done with the next Echo, whether to have it locally or at her center and when. I asked, "what if I had a crisis and couldn't get in to see her?" and was told to call and she would make a decision based on need. Apparently, she is only in the office 1 1/2 days a week and is in clinic (whatever that means) the rest of the time. Here's another part of the story...when I was diagnosed and going through the crisis that caused the coding and subsequent renal failure, I had seen her once and was using a local rheumatologist. HE was concerned about my kidney function but felt his hospital was not the place for me since they knew nothing about scleroderma and it took him 2 days to convince her to admit me, then, when I was re-hospitalized locally one week after being released I called and asked to be brought to her center and she refused! She is the leading expert in the area,, and I am also able to get to Dr. Wigley in Baltimore. There is also a center in PA I interviewed at and like the doctor there but determined it was too far away for immediate help. I've just been too sick over the years on dialysis to do more than go through the motions but want to be more proactive, especially since lung disease is the leading cause of death now. When I was diagnosed, kidney failure was and I really thought I was going to be dead in 5 years, it was only through this board that I realized the internet was not accurate with mortality. I have taken Tai Chi, Transcendental Meditation, yoga, been to counseling for overeating and grief, but the best therapy for me is the beach and I am heading there in a little while to chill, probably literally because it is sunny but not that warm today. :) I am going to hold on the anti-depressant for a little while. Is it time to fire my doctor or at least seek a second opinion? miocean
  10. miocean

    An Invitation to MJ's Kitchen

    Janey, :emoticons-group-hug: YOUR SITE LOOKS BEAUTIFUL! :emoticons-group-hug: I don't do kitchens but bookmarked it for my husband, who is an excellent cook and thrives on reading cookbooks. May you have much success with it and may many enjoy it! miocean
  11. miocean


    :happy1-by-lisa-volz: My Avatar is self-explanatory. :happy1-by-lisa-volz: This is a view of my beach in NJ, looking north towards the jetty. I am sorry Snooki is not in it! :glare: miocean
  12. miocean

    Minus 25 lbs :)

    :emoticons-group-hug: Susieq :emoticons-group-hug: That is such great news! You are an inspiration! miocean
  13. miocean

    Supplimental Security Income Approved!

    I'm so happy for you! :emoticons-group-hug: miocean
  14. miocean

    Not even sure if I have Sclero

    Hi Dawn, Joining the club with celebration of the great news! :emoticons-line-dance: miocean
  15. Hi Indy, I have diffuse scleroderma. I was a runner, too, although my runs were 3-5 miles a couple of times a week. One of the first things I noticed was I would get tired, but it wasn't my legs, it was my lungs. Rather quickly, other symptoms appeared. My blood pressure went really high, I'm talking 200 over 120, and I had a crisis where I coded twice and my kidneys failed. I was hospitalized at the time so I was helped immediately, thankfully. At that time, 2004, the leading cause of death from scleroderma was kidney failure, with a life expectancy of 5 years according to the internet, so of course, I thought I was dying. I found this forum and found others who had long beaten those odds, even with kidney failure. There have been improvements in treatment for kidney disease with faster diagnosis, medications and dialysis and now the leading cause of death is Lung Disease, with a 2-3 year expectancy. I also have had this since 2004 and I am still alive and kickin'! Don't believe everything you read on the internet. I am so glad you have found this forum and hope you continue to post. It's a frustrating disease, because everyone is different. There seems to be times where the disease progresses, and other times where it plateaus. A specialist will be an asset to your medical team which, unfortunately you will probably acquire along the way. miocean
  16. miocean

    Throat issues

    Hi Margaret, I am so sorry :( to hear that Gareth is experiencing problems again. At my last scleroderma specialist appointment a couple of weeks ago she whipped out the "something or other necrosis". All I heard was the necrosis part and said, "well that means death" and she told me the only thing for it was a hip TRANSPLANT which I had never heard of. I researched it and it seems to me like transplant and replacement are interchangeable. (Someone correct me if I am wrong). Here is the Mayo Clinic page for Avascular Necrosis . Steroid use can cause it, and it mentioned Lupus, so to me that links to scleroderma. Also heavy alcohol use, which I'm sure is not the case with Gareth. I'm glad your doctor likes Gareth, that is so important with his disabilities. I have a non-verbal sister-in-law who is mentally disabled. She just had a hip transplant (age 40+) and did very well. She actually recovered quicker than those I know who have had one. I guess she was in so much pain and unable to communicate it that anything was an improvement. The nurses all loved her and they had no problem understanding her needs as she has her own way of communicating and understands most of what you say to her. I am having problem with my thumb joint right now and will bring this up to the hand surgeon I will be seeing and also my nephrologist because dialysis and kidney failure can also cause it. miocean
  17. miocean

    A Painter’s Disease

    I found this very interesting as it begins "After his death "...he was diagnosed. According to Scleroderma and Paul Klee he "died at the age of 60 in Switzerland due to severe scleroderma, which was diagnosed in 1936. From this time on, this connective tissue disease had followed him continuously and had strongly influenced his enjoyment of life, personal development and creative power in art work, before finally causing his death in 1940." I just had a conversation with Shelley about how scleroderma deaths are usually put down to other causes. My mother-in-law's death certificate reads congestive heart failure although it was scleroderma that caused her body to shut down. How would scleroderma be diagnosed after death? miocean
  18. miocean


    Sherrytrifle, I've had several endoscopies and colonoscopies. When I had my first colonoscopy I didn't quite go to sleep, even though I was sedated. 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 on the monitor. 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. The worst part is the prep for it the day before, :temper-tantrum: be prepared to have to drink yucky stuff and be near a toilet. You have to be on a liquid diet the day before and can't have anything red or purple. You will go into recovery after it and they will tell you it's ok to pass gas as a lot of air goes in you colon during the procedure. The doctor should talk with you immediately afterwards and tell you whether any polyps were found, biopsies were taken, or if you have diverticulitis. Mine took pictures and showed them to me. I have had a couple of polyps, all benign, and have slight diverticulitis but it doesn't bother me and I don't eat a special diet for it. The same thing with my first endoscopy, I didn't quite go out and it was awful, they had to hold me down and I felt every minute of it. Everyone I have had since then I was out and didn't feel a thing. The very worse part of either of these procedures was trying to get the IV in my arm as I am a hard stick, although that has improved as my skin has softened. Are they looking for something in particular, are you having symptoms, or is this just a baseline test? I hope you do well, welcome back, and keep us posted. miocean
  19. miocean

    Throat issues

    Dear Margaret, I'm sorry to hear about Gareth. I hope you get an answer on Friday. :emoticons-i-care: miocean
  20. miocean


    Yes, Amanda, I too am a little late in wishing you congratulations on being a grandmother. :emoticon-congratulations: I never had a baby myself so grandchildren are not an option and most of my friends are posting pictures of theirs now and they are just the cutest things! :emoticon-hug: May her life be blessed with health and happiness! miocean
  21. Well, I never knew it was called Valley Fever :blink: but when I visited Las Vegas after having my kidney transplant I had to wear a mask there because there are certain parts of the U.S. where you can pick up bacteria from the soil and it's a very long word that begins with a "c" so I guess that is it. People with weakened immune systems are very susceptible to it. I have to be very careful around soil, in general, because of the bacteria, and am not allowed to garden. That is fine with me because as much as I love the look of flowers I do not like planting them so my husband does that. I have Interstitial Lung Disease and my lungs have shown a spot on them for years that none of my doctors seem worried about. :emoticon-dont-know: I see my pulmonologist soon and will have all my scans and reports with me so I will question it. It's odd about how we can test positive/negative for certain things. I am positive for Epstein-Barr Virus, yet never had mono or anything other than a flu. I found out after my transplant that I am positive for CMV Virus but so was my donor so the likelihood of getting it active again decreases for me, especially now that I am a year out. In September my Pap showed active HPV Virus but this month it did not. It sure sounds like I have Herpes but I have never had genital warts or even a fever blister on my lips that I can remember. I did have Chicken Pox. It sounds like the majority of people have these diseases without even knowing it. I guess we should all live in glass boxes and wear masks and gloves when we go out. :blush: miocean
  22. :happy-dance: Hi everyone. :happy-dance: I titled this my favorite quote from Amanda Thorpe. It helped me through some very rough times. Keep it in mind when the going gets tough, I hope this bit of news will encourage everyone: Seven years ago when diagnosed with scleroderma my skin score was a 45 on a scale of 0-50. A couple of years ago it went to 28. After my kidney transplant it went to 11...then it went to 8 and now (drumroll) it is 3 miocen
  23. miocean

    First Sclero Specialist Appt

    Jean, I am sorry you are having issues with pain :emoticon-crying-kleenex: and that there is no magic pill to fix it. You may want to investigate a chiropractor for your back pain but make sure X-rays are taken before he/she manipulates you. I've always wanted to go to Paris! Enjoy yourself :emoticons-line-dance: I've discovered you just do what you can do and try to make the best of things. miocean
  24. miocean

    Dem Bones and other bits

    Dear Jeannie, :temper-tantrum: I am so sorry you are having pain AND hair issues! :temper-tantrum: I will be on prednisone the rest of my life as it is the protocol for my transplant. I have read of people who have had 4 hip replacements since their transplant. When I was at the scleroderma specialist she mentioned a hip TRANSPLANT! :emoticon-crying-kleenex: Never heard of it, has anybody else? miocean
  25. This donation was in memory of my mother, for her birthday. For the past several years I have been unable to travel to her gravesite to place flowers, which has made me feel very guilty because she was always the "grave tender" in the family. I have memories of being very little and going to the cemetery with flowers from her garden. Although this year I could have made the trip she always said "you can do more for the living than you can for the dead." miocean