miocean

Members
  • Content count

    926
  • Joined

  • Last visited

Everything posted by miocean

  1. amberjolie, My skin softened but since then my lungs have worsened. Another question, once your skin softens, can it harden again? miocean
  2. My medically free week is over. :( It wasn't totally medically free because I did have to contact some doctors but I had no appointments. I also had to fill out the forms for the evaluation at the lung transplant center tomorrow and get my paperwork in order. I've decided not to worry about being perfect with it because I haven't found one doctor or center yet that has been perfect with me! Ha! :D miocean
  3. I am happy today because I have a medically free week coming up!!!! :emoticons-line-dance: :emoticons-line-dance: :emoticons-line-dance: :woohoo: miocean
  4. Dear Judy, I went to a nutritionist through my hospital a while back because I needed more magnesium and the tablets were only making me have extreme diarrhea. My doctor couldn't tell me foods that were high in magnesium! Doctors in the U.S. are not trained in nutrition. The nutritionist told me things that I knew were not correct, wanted me to eat some highly processed foods. I tried an naturopath years ago when I was first getting sick and I believe that did more harm than good. I was looking for a new primary care doctor and this was who my nephrologist recommended. They work well together and that is my most important concern, the fact that he is a functional medicine doctor surprised me. I still don't know how well this will work out but I feel I am eating healthier. I am eating whole foods, no sugar replacements, and no sugar. No diet sodas. I am not sure what happens if after the elimination and reintroduction there are still issues but I will see. I know he will not advise me to do anything that will harm my transplant and my nephrologist will keep a close eye on me. We are mysteries to most doctors. My kidney transplant especially complicates things and herbs can even set my levels off. I have a dilemma now because with the transplant I am supposed to drink a lot of fluids, but with pulmonary hypertension you are supposed to keep the body dry. I really need another "ologist." Face it, what works for the normal person doesn't work for us. miocean
  5. I just finished an elimination diet under the supervision of my new primary care doctor who is a Functional and Integrative Medicine doctor. The philosophy is to find the cause of the illness, not just treat the symptoms with medicine. Many illnesses are from intolerance, not just allergies, to certain foods. In order to find out what they are I eliminated many foods for 21 days, most are known inflammatories. I really didn't think I could do it. I think "diet" is the worst 4 letter word. I have been on almost every -one invented. I hate keeping a food journal from so many years of dieting. I am a sugar addict. I went to therapy for a couple of years for compulsive overeating. I looked the paperwork over and decided with everything happening in my life right now I should try to be in the best condition possible so I started it thinking I would last about 3 days but I would give it a shot. I am looking at it as an experiment rather than a diet. And I did it!!. :high-five: I found out immediately that coffee upsets my system. I am now at the point where I am re-introducing foods one at a time to see how the affect my body. I documented everything I ate. I ate small meals about 4-5 times a day, just because I was hungry. I wrote down my symptoms. I was fatigued many of the days and energetic others. My sleep pattern has improved. My GI problems have improved, I no longer have constant abdominal pain. I am eating healthier foods. I went back to the doctor and asked about vitamins and he told me I am getting better vitamins from what I am eating, and I get so much blood work done I know I am the right levels. I have also lost a few pounds, although it is not meant as a weight loss program, and I need to lose them. The interesting thing is my very traditional, study based, peer reviewed nephrologist is the one who recommended this doctor to me. I am curious to discover what does affect me. So far I introduced decaf coffee as I missed coffee so much. It didn't upset me as much as regular, but did a little bit and I didn't really like it as much as the real thing. I am now about to choose another as you give your body a break in between introducing foods if there is a reaction. Hmmm....what to chose? I, too, am interested in the fructose issue. If I find that that other things are not an issue I will bring that up. Thank you for sharing. miocean
  6. Marsha, I am so sorry about your hands and feet. Are your feet starting to curl as well? My feet did not curl but I have had bent toes since childhood and have trouble finding comfortable shoes. My mother-in-law had limited scleroderma and at the end of her life her feet were curled. I went to Occupational Therapy for five years. For the first couple of years it was two times a week. Then I would stop for a while, and go back, in order to qualify for insurance. My fingers were clawed in and I couldn't make a fist. I couldn't hold a pen to write my name and using a keyboard was difficult. At therapy I would start out with a paraffin bath and heating pads, then have hand exercises to do with hand putty, other exercises with hand weights and machines, and then my therapist would gently (although it did hurt) stretch my hands. Today my fingers don't straighten and are slightly curved but I can make a pretty good fist and hold things. My skin also softened, making it easier to manipulate my entire body. Can your get a prescription for Occupational Therapy? You can buy a paraffin bath but I didn't like the one I had at home. I took up a lot of space and had to stay on and heated all the time to make the wax stay melted. Do you do any hand exercises? I was fortunate to have a great hand therapist. I really feel for you. miocean
  7. On Tuesday I had a Barium Swallow test at Transplant Center #1 to see if my esophagus is working correctly in order to proceed with the lung transplantation program. Well, they saw me coming...and I swear they deliberately ran late just because I was there as things never run smoothly for me. :D My test was scheduled for 1:30 and then I was to be rushed right up to the transplant wing to meet with the surgeon. I ended up sitting in a waiting area with 3 other women who were all complaining that it had never taken this long at the hospital. I ended up finishing the test around 3:30. I thought it went pretty well, didn't have any problem swallowing or anything. I met with a really nice doctor who explained the program to me, told me about the surgery, recovery and rehabilitation, risks, and life expectancy post transplant, the 3 days of testing I would go through if approved and how they are careful in selecting candidates because it affects their success rates. After examining me he said he could hear crackles at the bases of my lungs, which is usual for me, and said I might be too healthy to transplant. :) The next morning he called to tell me the results of the Barium Swallow. FAIL My esophagus is not functioning correctly in the upper part, the lower part, something is wrong with how it works with my stomach and I have severe reflux. I knew I have a hiatal hernia but was unaware of the other issues. I take omeprazole and have since diagnosis in 2004 but was unaware of severe reflux. Before my kidney transplant I had dry coughing that was finally attributed to GERD, but I don't get heartburn and rarely have food or pills come back up. My esophagus is also dilated, which I thought is strange and not sure what it means because it seems like most people here with esophagus issues have had to had theirs stretched. The report has been sent to my doctors and one is on the way in the mail to me. Because of this I am not a candidate at this center. I have an appointment next month at another center, but they have the same criteria as the first. A third center has been recommended that takes higher risk candidates but it is almost 1,000 miles away... So I am keeping my fingers crossed that the fibrosis in my lungs will not progress and the medication for the pulmonary hypertension will improve that and my shortness of breath will lessen. And hey, I may be too healthy to transplant AND I look great!! :P miocean
  8. Oh, can I relate to that! Only for me it's not just the multitude of doctors, its friends as well. Many think because I got the kidney transplant that I am "cured." I was just talking with a friend and when he asked how I was doing, I told him about going to be evaluated for a lung transplant and he said, "I thought the kidney transplant fixed everything." I had to explain that scleroderma is a progressive systemic disease that has damaged many of the organs in my body... I encounter this all the time. I look healthy. The only thing that gives a clue that I have an illness is now I have oxygen therapy and have a cannula up my nose. So Jac, I get it. miocean
  9. Hi Annie, I was able to find this abstract on Grzybowski Syndrome. It mentions methotrexate as a treatment. Have the doctors in Canada tried that? Many on this forum have used it for treatment of scleroderma. Perhaps the doctors at Mayo would be interested in it. I was able to find this by searching on Google Scholar. You would have to pay a fee to access the entire article. It might be worth it to view the article if you haven't seen this already. Please stay with us, it must be terrible to be so alone. I thought scleroderma was rare! miocean
  10. Dear BC Gal, Its good to hear from you and thank you for updating us. I am so sorry you are going through all you are and hope the Mayo Clinic can provide some answers. Grzybowski Syndrome is a very rare disorder for those new to the forum. Although I don't understand much of what you are going through I relate to the dialysis as I was on hemodialysis for 5 1/2 years before a transplant. I know how very rough that is...and with all the other complications of another disease. If I can help you in anyway with that, I will. I am familiar with the transplant process in the States but am not sure how that would apply to Canada. What type of dialysis are you doing? I wish there was a way for you to connect with others going through the same thing but with so few known cases it must be hard. Just remember, we are here for you. miocean
  11. Jac, WE THROW A PITY PARTY!!! I'll bring the ice cream...who's in? Seriously, there is actually an entire area on pity party, go to Medical Pages and put in a search and see what comes up! :D We all dissolve or break. Everybody does, not just those with scleroderma or other chronic diseases. You have a right to and should honor those feelings. Somehow or other we are able to pick ourselves up and work through it. Try pampering yourself with a special treat, for me it is the ocean and sky that soothe. There are times we need to rely on help from professionals if we can't get through it ourselves. It must be hard living alone and you are lucky to have your Mum. A good group of friends are important, too. Unfortunately many of my friends are busy living their own lives so I do go to a professional to talk things out. Thinking of you, miocean
  12. The results of my lung CT scan came in and the fibrosis in my lungs has increased. Along with ground glass I now have an area of honeycombing, a more advanced form of fibrosis. I started oxygen therapy a few weeks ago due to desaturating on a six minute walk test and a decline in lung function on my pulmonary function tests. I consulted with the pulmonary doctor at the scleroderma center and he is submitting my records for lung transplantation to two centers in my area. I do not need a lung transplant at this time, I may never need one, this is just to find out if I would even qualify. I have a lot going against me: age, scleroderma, and the kidney transplant. I've known for a long time that the only thing that could be done for my lungs is a transplant so this is just at the investigative stage. I had a right heart catherization to test for pulmonary hypertension last week at the scleroderma hospital. This one was different from two previous ones as part of it was done during exercise. I had to lift saline bags until the point of exhaustion. I've had two previous heart caths but not under exercise so this was a new medical adventure! After the procedure the cardiologist told me I have "slight pulmonary hypertension but he has seen worse." He was forwarding the results to the pulmonologist and scleroderma specialist and told me they would prescribe the treatment. My scleroderma specialist called today with the results of the heart cath and I have fluid in my lungs. A diuretic will have to be found that is compatible with my anti-rejection meds and my nephrologist will need to decide which one. Once the fluid problem is solved I may need to go on something like Viagra, if it is compatible, for the pulmonary hypertension. I am waiting for the pulmonologist to weigh in on this. There have been very long days with doctors and the heart catherization reactivated my hospital related PTSD. There will be more doctor appointments coming up and more medications in the mix. I have a lot of questions that need to be answered, and will need to coordinate a lot of this. Longing for medically free days, miocean
  13. Did I ever tell you I love you all for being there and understanding? (oh yeah, I think I did but I'll say it again) :D :emoticons-group-hug: miocean
  14. Shelley, Unfortunately you are not exaggerating. At least someone understands. miocean
  15. I saw my scleroderma specialist yesterday and am now enrolled in two studies, one for calcinosis in scleroderma and the PHAROS (Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma) study. They are tracking studies. I also filled out the paperwork for Adcirca which is the same as Cialas (tadalafil) for the pulmonary hypertension. She seemed to feel that getting fluid off me and treating the PH would help, even said I might not need oxygen anymore. She also said I test low on the antibody test which would show a high risk for lung disease. Of course, at the time I didn't think to ask her then why do I have lung disease? But I have had lung disease for 9 years now and I am still here! ‚ÄčThe interview at the first transplant center is June 18th. I have not heard anything back from the second one. Once again, I am hearing different things from different doctors (the cardiologist doesn't think it is fluid) but have just decided to go with the flow for a while. I look good and feel good and my kidney is doing well so I am not going to try to micromanage right now. I'll keep you posted, miocean
  16. Thanks Jo, I had checked every box except "Follow this Forum" and couldn't figure out why I wasn't getting email updates. I hope it did it correctly now. I thought it was just me or a mac thing. :emoticons-thankyou: miocean
  17. Hi Jazi, Welcome to the forums, I am sorry because it is because you are having health issues. We all have been there, the running from doctor to doctor, different diagnosis, knowing something is wrong and not getting a definitive answer. I hope you can find a scleroderma specialist near you, or can even travel to see one. I only see my specialist four times a year and it is an hour and a half trip, if there isn't too much traffic. It is well worth taking the effort, however, my scleroderma specialist would not take a patient unless a scleroderma diagnosis was made by another doctor. We are not doctors so cannot diagnose you but can offer you support and answers. Jo linked to great medical pages and there are many more you might find helpful. Keep us posted, miocean
  18. I had two appointments today with new doctors and actually have a good feeling about this!! :woohoo: I hope I'm not being premature.... Many of you know I have experienced frustration with my multitude of doctors and no co-ordination among them about my care. Over the years I tried to keep the majority of my doctors at one local medical center, aside from my scleroderma specialist, thinking this would make everything easy. However, my Primary Care Physician was not a part of this group and is an overworked clinic doctor, a good doctor, but my health issues are beyond what he can manage. I never sought another primary care physician until now because one of my doctors told me my case was so complicated it might be hard to get anyone to take me on. After looking into some options, I asked my nephrologist who he would suggest that might take me on as these two doctors need to communicate with each other well, and I went to him today. I had a great consult with the recommended doctor, gave him a brief rundown of all of my complicated issues, health and communication-wise and he said "I am not afraid of you." :D I liked everything about his office and will try him and see how it goes. He takes insurance and if it doesn't work out after a period of time I can always try something else. :P I also saw a new cardiologist, also recommended by my nephrologist and my chiropractor. He is part of the group my previous cardiologist belongs to but has no problem with my switching to him. After a brief summary and a look at recent tests including my right heart catherization, discussion of pulmonary hypertension and lung transplant evaluation, he concluded that my cholesterol level was not an issue to be concerned about. I have no heart disease history in my family, my left heart catherization in 2010 showed no blockages, and in a couple of months I will have a carotid artery sonogram. Well, what have I been saying all along...? :emoticon-bang-head: So it sounds good, doesn't it? Only time will tell but I am feeling more positive about things. And the moral of the story is, don't give up looking for the right fit of doctors. We'll see how this goes as I see the scleroderma specialist next week and go for the initial lung transplant evaluation the week following. miocean
  19. Hi rgmarie, Welcome to the forum. They are a wonderful place to get answers and share. I have been using it for years but have noticed that there has been an increase in posts by people with morphea over the past year, especially from people your age. Although I cannot personally answer your questions as I have diffuse scleroderma I hope I can help you in searching for any topic you are interested in. To search: At the top of the page at the right of the blue menu bar is a "search" area. Click on the gear. It will open up an advanced search. Input your topic and then where you want to search. I put in "morphea" and searched "Sclero Forums (MAIN)" and it open a page of posts about morphea. Also, now that you have posted, at the bottom of this page are related posts. Best wishes! miocean
  20. I am happy today because I cried. I know that sounds very strange but I haven't been able to cry since 2004. I can clearly remember the last time I cried, I was in the hospital after the scleroderma crisis when I stopped breathing, my heart stopped, and my kidneys failed. It was about my third week in the hospital and I had test after test after test with no end in sight. I was having a non-invasive sonogram of my legs when I started crying, I just couldn't take it anymore. I went back to my room and cried some more and then didn't cry again... ...until last night. I had a particularly difficult day. I was looking forward to a day on the beach and it was overcast and 98% humidity. The air was full of pollen and everything was green with it. I was out of sorts and took it out on my husband. We decided to go to a garden center and finish buying plants but even with my oxygen on it was hard to breathe. When we got home I was soaking wet, hair and clothes. I slept on the couch but when I got in bed for the night I started to cry. My husband asked me what was wrong and I wailed, "I just feel so broken." I was physically, mentally, and spiritually broken. I try so hard to be strong and positive and was just done. I was sorry I took it all out on my husband. I know we are not supposed to use quotations on the forum but there is part of a poem I remember: "and in breaking I make myself whole again." I am whole again. miocean
  21. I am wondering what your favorite holiday is...and what makes it special. Maybe share your favorite holiday and something about it that makes it special to you. My favorite holiday is Memorial Day! It falls at the end of May here and is in remembrance of those who gave their lives for this country's freedom. However, it is the unofficial start of summer! The beaches open, which here means they start charging fees to go on, the lifeguards and my beach friends return, and it is the beginning of everyone coming to the Jersey Shore (and if you watch the t.v. show it is really not like that...well, sort of :D ). So it's about 5 more months to my favorite holiday! I am wishing peace and strength to all my forum friends. :balloons: miocean
  22. :emoticons-yes: Once again my favorite holiday is approaching. :emoticons-clap: This year is a very different one here at the Jersey Shore. The beaches have done their best to rebuild the boardwalk and buildings and where I live is up and running but many places along the ocean are still recovering from Hurricane Sandy. I have a feeling that my town will be packed with people coming down for the day as beaches north of us and south of us were hit harder and haven't recovered. We have most of our boardwalk back, the restaurants and bars are back, and the rides and amusements are open. There aren't many places to stay, motels are still being rebuilt and gutted, houses are being knocked down or raised up higher or stripped down inside to the studs. It seems that it has been grey and dreary for months and I have only had a couple of days to get my "beach fix" in. The forecast for this weekend is good but the sun is supposed to be shining today and it is not. But my beach bag is packed and I am ready to go, oxygen converter and all!!! I am looking forward to seeing my friends and to the craziness that is summer at the shore. We are just going to have to drive up to the beach earlier so we can get a parking space! I hope everyone is well and looking forward to their coming season depending on what part of the world they are in. :emoticon-hug: miocean
  23. :emoticons-line-dance: Woo Woo!!! :emoticons-line-dance: miocean
  24. Oh, I know the answer to this one!! I have my wide brim sun block protection hat, sunscreen, sunglasses, long sleeve shirt, long pants, and beach umbrella packed and ready to go. I will be at the beach everyday I can! I can't wait! The ocean is my meditation. As I mentioned previously, scleroderma made my skin unnaturally dark all year long. I couldn't sit in the sun because it made my skin hurt and made me itch. It looked like I sat and baked all day, though. Over time, as my skin softened, the strange darkness has faded some but I am still tan. I am always being told by doctor's to stay out of the sun and then I tell them how careful I am. I look tan, but it if you compared exposed areas to areas that haven't seen the sun in years there isn't that much difference in color. I have had some small skin cancers removed since my kidney transplant, the anti-rejection meds cause skin cancer so I do have to be extremely careful. I AM as careful as I possible can be, I go for skin cancer checks twice a year, I wear hats and sunscreen when I am just going outside in the sun. My vitamin D levels are normal, and it makes me feel good. Scleroderma took so much away from me. It took a job I loved, my social life, the use of my hands to create art, my morning runs, my mile swims, my ability to walk along the sandy shore, many days of my life by sitting in a dialysis chair, hospitals, and doctor offices... I will not allow scleroderma to take away miocean
  25. Although I didn't set the timer I did spend less than an hour today resulting registering and making an appointment with lung transplant center #1 in June for a barium swallow and beginning interview. I called the PC doctor and have an appointment set up there. I received a call from the second transplant center, just for a couple of questions about skin cancer. I found that interesting, with all my medical complications that was the one they wanted answered... miocean