Jump to content
Sclero Forums

miocean

Members
  • Content Count

    926
  • Joined

  • Last visited

Everything posted by miocean

  1. Hi Margaret, I am sorry to hear about Gareth. I guess not having any pain is a good thing but it is a mystery why it came and went. miocean
  2. Hi Splaty, I have really bad calcinosis on my buttocks that is very uncomfortable and at times painful. I have been fortunate as they have not ulcerated or leaked. I can't imagine what you are going through with so many areas of your body affected. I was told by my scleroderma specialist the only option was surgery. At the time I was waiting for a kidney transplant so surgery was not an option. I received the kidney over a year ago but have not had surgery. My calcinosis is spread over a large area and what I would have to go through and my weakened immune system from my anti-rejection medications makes it very risky. I have been told to keep the area dry and that they go much deeper than they look. I put up with it by sitting on pillows but know of no medicine that makes them go away and even surgery isn't a proven cure. I wish I had the magic answer for you but I don't. miocean
  3. I've developed a great affection for sweatshirts, preferably fleece, with pockets. I have bought some because I liked the color or needed it to go with something only to realize no pockets! From now on that will be something I check. I have a fairly big collection now, and they are great in all seasons, in the summer they can be used in air conditioning and brought into stores and restaurants. In colder weather they can be layered. That's a great idea, Jeannie! :great: miocean
  4. Hi Chris, I have diffuse scleroderma and understand your feelings of frustration and loss. I think the LOSS one experiences extends through all aspects of life, friends, job, things you love, etc. On top of this, scleroderma does not always "show". I can't believe how many people have told me, "You look so good." Okay, I was on dialysis (fortunate to receive the gift of a kidney in 2010), have lung disease, heart failure, my GI system is damaged, sclerodactyly , fatigue , and depression, BUT I look good! :emoticon-dont-know: I discovered most of my friends can handle only small bits of info on my health. Even relatives don't truly want to know, I've been accused of worrying too much or being negative if I go into details with them. Most people think I've been "cured" since the kidney transplant. They don't understand why I am not able to pick up my life where I left off in 2004. I've been fortunate in that most of my friends have stayed in touch, although their lives are so busy with work and children our contact/communication is very limited and often I am the one to initiate it. (This is nothing new, however, for some reason it has been this way all my life.) I have made new friends, some are keepers and some I had to give away. Like Chopper, I give honest information when I am asked but will end it with something like, "but I'm here and I'm smiling" to keep it light. It sounds like you are dealing with a lot of loss. It's okay to grieve. Your life has changed and it is remarkable to me that you have been through all you have and are doing so well and still reaching out. This is a wonderful forum with people who have been there. We are your friends and will help you as we are able to. There is so much information on this website, take advantage of it as well as the forum. I hope you stay involved because your story can help and inspire others. miocean
  5. Hi Sandy, I understand your apprehension about surgery but your positive attitude will carry you through. Best of luck on the 18th! :flowers: :flowers: miocean
  6. I returned from a trip to an area with no internet service, opened up the ISN site and found a beautiful new change! to all who worked so hard on this. I've learned it is not easy. miocean
  7. miocean

    DLCO test

    Hi Lisa, I have had diffuse scleroderma with lung involvement for 7 years. My DCLO has dropped as low as 38% and is now 45%. I have been on and off oxygen therapy a couple of times and right now I am off. I find I get out of breath and need to take things slowly but am managing. Your lack of energy and fitness level are probably related to this, in part. I've gone from a runner to a slow walker but hey, I'm walking! My friends know to slow down for me or that eventually I'll catch up. I'm sure you already know this, but keep copies of all your tests so you can look at the numbers for comparison in the future. miocean
  8. :emoticons-group-hug: SusieQ, thinking of you! :emoticons-group-hug: miocean
  9. Marjorie Elaine Settle was my husband, David Settle's mother and the best mother-in-law anyone could ever have. When she was diagnosed with scleroderma I thought "oh, this doesn't sound good" never dreaming the same fate would befall me. She was an inspiration to me. She maintained her great sense of humor and never complained. Her birthday is August 13th and this is in her honor.
  10. Snowbird, My Bucket List 1. Love my husband, family and friends. :wub: :wub: :wub: 2. Don't worry, Be Happy :emoticons-line-dance: 3. Get my home in order (things are still everywhere from renovating but getting better every day). :VeryHappy: 4. Do art again :happy-day: 5. Give back 6. Travel (3 trips planned already) :emoticons-clap: And of course there is always miocean :rolleyes:
  11. I met with my nephrologist to review the kidney biopsy (NORMAL) :emoticons-line-dance: and he said: "You look good, your kidney is doing great, we all have problems, stop seeing doctors for a while." Mind you, besides seeing him on a regular basis I have seen my pulmonologist, a lung specialist, and my scleroderma specialist* since May. I have an appointment with my pulmonologist this month which I will keep, an appointment with a hand surgeon I am going to cancel because nothing has changed and I can't see wasting his or my time, and then don't see my nephrologist until September and my scleroderma specialist until December when I will have a PFT, 6 minute walk test and Echo. Based on those results she will determine whether or not to do a heart catherization and CT scan. I have a few new medical reports to organize, some loose ends to tie up, standard blood work to be done monthly but I am basically putting my files away and forgetting about it. Unless, of course, I have a medical necessity. * My appointment with my scleroderma specialist was fairly non-productive except for the fact that I have an appointment scheduled and tests to be done at that time. She is usually test,test, test, and medicate right away. I know the lung specialist at her center and my other doctor have both been in contact with her so maybe that has pulled her back a little. In all honesty, she looked tired, dark circles under her eyes that I have never seen before. I am officially taking a vacation from the medical machine! :woohoo: miocean
  12. Kei Kei, You made me laugh and we all can use a good one! :P I am so glad you have joined us here. Welcome miocean
  13. Hi Gil, I hope today finds your pain has lessened. I just want to remind you and everyone else who suffer from ulcers about Medihoney or Manuka Honey. I recently got ulcers from sitting on a bed pan and was told to use it by my nail tech who is also into natural/organic things. I bought Manuka Honey at a local health food store, applied it, and by the time I saw my dermatologist they were GONE! The kind I bought you can also eat. I did not know this until I looked it up but it comes in different strengths, the one I bought is +5, it really should be used at higher strengths for theraputic use. I know a man with diabetes who has used Medihoney to rid himself of an ulcer on his foot. His came in a sheet which he would cut, apply and then cover with a bandage. It is just about GONE! The product does not come cheaply but it does work. Thank you bees in New Zealand. miocean
  14. Hi Red, :emoticons-line-dance: Welcome to Diffuseland, a world of ever changing possibilities! :emoticons-line-dance: Its time for a Pity Party Did you know there is an entire section of ISN for this? Click on the link. While you're using up all your toilet paper tonight or home tomorrow taking it easy, have a read and a good laugh! miocean
  15. Lou, I don't have experience with foot issues myself but have known several people who had surgery for a variety of issues. The recovery seems to be long and slow but everyone says it was worth it. miocean
  16. Margaret, Sending best wishes toward Gareth. :emoticon-hug: A friend of mine has Lupus, got an upper respiratory infection that turned into pneumonia and then to pleurisy. Her doctor told her that was common in lupus and scleroderma seems to have so many similarities. miocean
  17. Hi Simone, Prednisone is the drug we love to hate. Prednisone can reduce inflammation and make you feel great but as mentioned, high doses can be dangerous and cause scleroderma renal crisis. I am not a doctor so I can't question your mode of treatment but I have experienced renal failure and I wouldn't wish that on anyone. Please read the information in the link and ask some questions. From 2004, when I was diagnosed with diffuse scleroderma and renal failure, until now I have been on steroids, and before that, off and on for sinus problems. I was on 2.5 mg of prednisolone and was told by my scleroderma doctor that a scleroderma patient should never be on more than 30 mg. That changed when I had my kidney transplant last year. I started out at 60 mg of prednisone and was lowered until 5 mg where I will be for the rest of my life. I believe I am having anger issues from it :temper-tantrum: . The doctors tell me this low of a dose wouldn't do it but I have always been an easy-going person and I can see the difference, along with some others who seem to have no problem telling me about it and suggesting I go for counseling or on other meds! Speaking of which, it is time to take mine. I take about 25 a day but for some reason they are easier to swallow than the ones I was on before the transplant. Let us know how you continue to do. I am sorry you have scleroderma but there is a lot of support here and a wealth of information. miocean
  18. <It's the little things...those small slices of normality the loss of which can leave us grieving...even more than the big bombshells. > Amanda has done it once again! I hope you are keeping a notebook of your insights, Amanda! Chopper, <Here's to those of us who have loved ones who say they have empathy for us but truly don't know how occasionally it can be down-right saddening and frustrating to make ANY (diet) changes!> You are so right! It is heartbreaking enough to give up things you love, let alone when no one understands the frustration you are going through, not just the loss. miocean
  19. Craig, That is such good news! :emoticons-line-dance: miocean
  20. :happy-dance: Just wondering what music you listen to to chill out, rock out, calm down, and smile... :happy-dance: I am a child of the 70's so here is what mine is: Years ago when I first began experiencing anxiety issues I would listen to Leonard Cohen, blaring him in my dorm room. I love him, he is so depressive he makes you feel good. :VeryHappy Last year I was totally into Adam Lambert. First of all, I love the "Screaming Demon", Steven Tyler (see below) and Adam has an incredible vocal range. Being an artistic soul, his presentation of himself appeals to me even though to many others he is a little on the bizarre side. This year I am back into my love of Aerosmith. I have seen them 5 times in concert in the last decade, once so close that Steven Tyler took a harmonica out of his pants and handed it to the girl in front of me! Hard rock was not my genre in the 70's so all of their old songs seem new. I have ordered every CD I don't have. I read Steven's autobiography "Is The Noise I My Head Bothering You" and it is the first book I have been able to read in a long time. I used to be an avid reader (3 books a week) but over my sclero years have lost the ability to concentrate. Although it took me a long time to read it I am happy to say I finished a book! I am now slowly reading his biography and contrasting the two. The first quote in my signature is from "Amazing." I enjoy classical and played it in my classroom to calm the kids, but prefer the artists of the 70's like The Classic Billy Joel and a flute one by Ian Anderson of Aqualung.I love the piano of Keith Jarrett and teh music of George Winston. My husband has a very varied taste in music so we have African, Island, Costa Rican, and Spanish. I never know what I will hear when he puts a CD in. There is musical gene in my family but it skipped right over me :P and I have the artistic gene so I am well aware I am lacking. All of my family members are musical and so is my husband. My first husband had perfect pitch and that is truly a gift. I have tried to play the piano, guitar and sing. My piano teacher told my parents they were wasting their money . I appreciate music and am open to new things so what is your favorite? What calms your soul and gets you going? By the way, "I Hope You Dance!" :happy-dance: miocean
  21. Hi Louise, I do not have linear sclero, I have diffuse. I have used tanning beds in the past. There is a lot of controversy about their use and where I live there is an extra tax on using them and I could be wrong but you have to be a certain age to use them. There are different kinds of bulbs, different lengths of time that you are in them, beds you lie down in (make sure they are clean) and booths you stand up in here. New bulbs are more powerful that old bulbs. I don't know what others will reply. I found they made me feel better (I am a girl of summer) :happy1-by-lisa-volz: and used them in the winter. I don't use them anymore because I get enough sun exposure and am taking ant-rejection medication for a kidney transplant the causes skin cancer but my husband will go and tan a couple of times in the winter before we go to a warm climate for vacation to prevent burning in the sun. Years ago (1960's) I lived next to a woman who had very bad psoriasis and a light box was built in her basement. It was a stand up closet with lights but I do not remember what kind. It helped her. I'll be interested to find what you find out and decide to do. miocean
  22. JBG, I know how you feel. Have you tried hand exercises or Occupational Therapy. It is amazing how much mine have improved and I don't do them as diligently as I could. Many of us have lost things we love. It is a grieving process and you have certainly been through that enough. You could always volunteer for the ISN. :emoticons-group-hug: miocean
  23. Hello from the hospital! I just wanted to let you know that so far everything is going fine with the biopsy but the pathology report won't be available until Monday. I am not allowed out of bed so it's a bedpan for me. :temper-tantrum: My first two urines had blood but the second seemed a little less, however the nurses didn't save any of it so when the doctor came by there was nothing but their word that it looked like cranberry juice. Then, they are putting fluids in with an IV, my medicines kicked in with severe diarrhea and I sat on the pan for an hour before I had it emptied and of course you couldn't see anything but brown. As a result of sitting on the pan so long I am getting am ulcer (bed sore) in a ring where the pan was :emoticon-bang-head: So I am now "holding it" and convinced them to give me medicine for the diarrhea. My urine is now clear so that means no bleeding. So yesterday the nephrologist calls and tells me my creatinine dropped to 1.3 and how did I feel about having the biopsy! After a long discussion and the fact that if he just banged the medicine, we waited to see what happens, if it jumps again I would just be back in the same spot. Even though I was having a lot of anxiety I was mentally prepared for it and had planned the time so I said go ahead. THEN I get a call saying they can't find blood to match me! I am O- and it had to be CMV- even tough I am CMV + and so was my donor. So we rescheduled for Monday. When I was rearranging everything for Monday I realized I have an appointment scheduled with a sclero specialist Tuesday and I would still be in the hospital. I called to tell them I couldn't do it then and was told the Red Cross called and they found the blood. So except for being bedridden in a hospital and all the things that go along with that I am a happy camper. :emoticon-insomnia: Miocean
  24. You go girl! :emoticons-line-dance: Miocean
  25. Margaret, I am sorry to hear that Gareth has pain that is being difficult to diagnose. However, I know how proactive and well informed you are with his care and know you will do everything to figure it out. Keep us posted. Miocean
×
×
  • Create New...