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Everything posted by miocean

  1. miocean

    How do you define "enough"?

    Shelley, This is so true, and I believe it takes wisdom and experience to get to this point. And sometimes a chronic illness. We work our lives away to acquire "things" and then we reach a point where the things don't matter. It reminds me of a few months ago while at a gathering with friends and the discussion of a "bucket list" came up. There were talks of cruises and exotic vacations, desires to go to Europe and the like. A friend turned to me and asked me what my bucket list is. I replied, "I don't have a bucket list. I've done all the things I've wanted to do, I've loved and been loved in return." THAT'S enough. miocean
  2. miocean


    Shelley, I had to go off the diuretic or I could go into rejection of my kidney with the high numbers I had. It is such a dilemma with the transplant, what is good for a lot of people is not good for me. It was the same with dialysis, too. I am using the oxygen almost all the time, whenever I am moving around and when I am sleeping. Perhaps my labs on Friday will improve and they will put me back on the diuretic. I spent this morning calling places about palliative care or a better doctor. I don't qualify for the palliative care at my hospital because I am too young! You have to be 65 there. The person I spoke with was lovely, she knows there is a need for people in my position and felt bad she couldn't help. She did suggest a primary care doctor and said that the doctor that does the concierge medicine is excellent. She also gave me the number of another hospital that may have palliative care for someone my age so I have a call into them. I called the PC she recommended and asked it I could set up an appointment to discuss my needs with him and was told I would have to switch my PC to him before he would even consult with me. I didn't like that and decided to consult my nephrologist to see who he recommends since they have to work so closely. I now have a name of another doctor to call to see if he will take me on and provide what I need. I called the concierge doctor and his office referred me to a general number to answer my questions, apparently he is part of a national group. Unfortunately, some of my questions couldn't be answered and they are sending me a brochure. The cost would be $1,800 a year out of pocket but my questions about other co-pays and how he would work with my other doctors were not answered on the phone. I didn't quite like this, either. I told myself this morning I would allocate 1 hour daily to deal with medical issues but this went well over. My husband and I decided to go for a walk by a reservoir as the beach was chilly. Just as we pulled into the parking lot a received a call from the lung transplant center saying they wanted me to come for evaluation and a barium swallow! It was a different person from yesterday so I asked if this meant they would consider me as a candidate and she said yes! I didn't have the necessary information to register right then and needed to check with my nephrologist about the barium and the kidney. Another phone call and found out It is okay to go ahead. So tomorrow my hour of medical calling will involve calling the lung transplant center back and seeing about the new PC doctor. I thought about setting a timer today but didn't and I am a "little" compulsive so kept on going. Tomorrow I will set the timer... I have really mixed emotions about a lung transplant but I am following the advice I give end stage renal patients: as soon as you are qualified to list, do it. You can always say no at a later date. As I say, you are the best! Just seeing your posts made me feel better. You are always there. miocean
  3. I had tendon friction rubs in my hands and my feet for a few years. As many of you know, I had a sudden onset case of diffuse with immediate end stage renal disease so they did not start years prior. You could hear the sound of my tendons when I moved my ankles and wrists. It's hard to describe the sound, not quite a creaking or very loud, as the tendons are rubbing against each other. After years of physical and occupational therapy they went away. They were not painful. Margaret, many medications can cause muscle aches. Statins caused me a lot of pain. Most of my medications say they may cause muscle aches and fatigue as well as a host of other things. Always something with sclero! miocean
  4. miocean


    Thanks everyone. I was put on a diuretic for about a week because it was fluid around my heart (congestive heart failure) not my lungs but as per my blood work it sent all my kidney labs all out of whack and I was ordered off it. My creatine shot up as did my anti-rejection medication level. I will have labs again at the end of the week and hope they improve. I seem to be very sensitive to drugs. I had an appointment with my local pulmonologist today and he is doing his best to get my doctors on the same page. I am looking into more help with this, perhaps palliative care or a concierge doctor. He thinks I should be on oxygen all the time. A lung transplant coordinator called from a center today and asked some further questions, told me I was probably not a safe risk but would further the work on to the doctors and get back to me. She was very honest with me and I appreciate that. I am tired. Physically and emotionally. My legs and stomach are swollen and to top it off the calcinosis on my buttocks has decided to worsen and is very painful. Poor, poor, pitiful me. But tomorrow is another day. miocean
  5. miocean

    Disability Insurance

    Hi Carr, Good luck next week. I don't have any advice except don't fuss over your physical appearance. As we all know, looks can be decieving. I qualified immediately due to kidney failure but I know how hard it is for some people. I have a friend with a different illness that took years and many appeals before she finally qualified. Am I right in thinking since you are going before a judge you have a lawyer? My friend went before the same judge several times and was always denied. When her lawyer finally asked for a new judge she qualified a few months later alhough she never did appear that last time. Her payments were retroactive to a certain time and her lawyer told her should could appeal that and go even further back but she decided not to. So, don't give up. Please let us know how things work out. miocean
  6. Sweet, Here's my take on it: The usual search engine for Macs is Safari. When the forum went through an upgrade a few years ago the use of emoticons, fonts, hyperlinks, etc. were no longer available on Safari so it was necessary to use Firefox. :emoticon-dont-know: Then, a while ago, magically the options were available on Safari. You would need to open the "More Reply Options" link at the lower right and would have full access to all those neat things. :emoticons-clap: :emoticons-clap: A couple of months ago the link no longer works to open the options, although under "Post Options" in the right sidebar they show they are enabled. If you use Firefox you can still open "More Reply Options" and will get all those neat tricks. Shelley, Did the forum go through some sort of upgrade a few months ago that may have modified this? If so, is there a way to put this feature back into Safari? I've been too lazy to switch back and forth so my posts have been plain text for a while. I'll repost immediately via Firefox to show the difference. miocean Here is a link to the post in the Welcome to the Forums section but why oh why did it work on Safari and not now....???? I don't like switching search engines....
  7. Sweet, Here's my take on it: The usual search engine for Macs is Safari. When the forum went through an upgrade a few years ago the use of emoticons, fonts, hyperlinks, etc. were no longer available on Safari so it was necessary to use Firefox. Then, a while ago, magically the options were available on Safari. You would need to open the "More Reply Options" link at the lower right and would have full access to all those neat things. A couple of months ago the link no longer worked to open the options, although under "Post Options" in the right sidebar they show they are enabled. If you use Firefox you can still open "More Reply Options" and will get all those neat tricks. Shelley, Did the forum go through some sort of upgrade a few months ago that may have modified this? If so, is there a way to put this feature back into Safari? I've been too lazy to switch back and forth so my posts have been plain text for a while. I'll repost immediately via Firefox to show the difference. miocean
  8. They are now putting pink bows on all the poles in town...and the pink lines and hydrants survived hurricane Sandy so we are in the pink of things here!! NorthStarHope, I have the opposite reaction than you. When I tell people I have scleroderma they usually tell me someone they know who has it. Just the other day this happened at the dentist, a new receptionist saw me with the oxygen and then told me her sister-in-law has CREST and goes to the same doctor I go to. It seems to be very prevalent around here. I know many who have been impacted by breast cancer. It's amazing the progress in treating the disease since the public has become aware of it and money has been put into research. I lost both my parents to cancer and too many friends. All diseases are bad. Hopefully, money will be put into scleroderma research and better treatment options will be found, maybe a cure. I've written letters to the government to support rare disease research and received letters back saying they voted for the legislation but who knows where it went after that. miocean
  9. October is Breast Cancer Awareness month and my town is going all out. The fire hydrants are painted pink. They have painted the lines in the street pink. All the stores are decorated pink. There are pink balloons everywhere. Tonight the stores in town had festivities and music and several donated a percentage of their sales. Coming up there will be a huge walk here with thousands of people expected to walk for Breast Cancer Awareness. It is a wonderful thing to see so many people work together on this cause. I know that cancer is a terrible disease. I lost my father when I was 18 and my mother a decade ago, as well as several friends. I know women who have breast cancer who are considered cured and others who have died. I have a neighbor who has just gone through very aggressive treatment and is the process of reconstruction and lost another neighbor a couple of years ago. I know what it is like to go through the suspicion of breast cancer, fortunately everything turned out fine with me. But we all know that scleroderma is a terrible disease also. I lost my mother-in-law to it, my best friend's mother, and some of my sclero forum friends. I know how it affected all of my organs, took a job I loved away from me, and isolated me from my friends. I know how all of you suffer, the things you have given up, the parts of your life lost. I know the procedures you have gone through, the body parts/organs lost. I rationally understand that it is a numbers issue, that many more are affected by breast cancer than scleroderma. But there is a part of me that emotionally doesn't understand it. I want to shout out 'but what about us?" When are you going to put even a small part of funding into more research and searching for a cure? Almost everyone has heard of Lupus or Multiple Sclerosis... I do not mean to minimize the seriousness of breast cancer or any other disease. I just wish there was a way to bring more awareness to scleroderma. I did write to my congressmen to have them create a rare disease bill and fund more money for research, and have written to make scleroderma a recognized disease for disability which it now is. Sigh (as Shelley would say)... miocean
  10. miocean


    Shelley, you always make me laugh! Years ago we took your advice about putting something fun into doctor visits. It does make them more bearable! We tend to go the ethnic food route rather than coffee, and have found interesting markets and restaurants. miocean
  11. miocean

    Winter is on it's Way

    I am sorry that those in the southern hemisphere will be putting away their sandals and flip flops and getting out their boots. I am thrilled to be back to warm weather as although I don't have ulcers, my feet don't do well in shoes. I gave up on even slight heels many years ago and would never order shoes without trying them on. I also have trouble getting my feet into boots as my ankles are not that flexible so they have to zipper up, not slide in. I found a brand that works well for me and I buy the ones that are flat soled and have a fur like lining. They are water resistant so that is a plus. I also buy a bigger size and bring heavy socks when I try them on. The problem is when I need a dressy shoe in cold weather. I have given up on fashion and go for comfort. miocean
  12. miocean

    Chat failures

    Kamlesh, I sent you a message. Can anyone else help get Kamlesh set up for chat? Thanks, miocean
  13. miocean

    Hello from Me!

    Hi Jac, Believe me, you are not the only one who is not good at hospitals and communicating, and many times it is not your fault. Dealing with an illness is difficult, the not feeling well, dealing with multiple doctors, understanding what they are saying, trying to coordinated your care, feeling isolated and other things you are expressing are common for anybody and must be even more difficult for you. I can see where hating being touched could really be a problem. You appear to have a good understanding of your issues. Are any kind of advocates available for persons with disabilities in England? Perhaps someone from there will be able to give you some advice on this. You have come to the right place for information, support, and FRIENDS!! miocean
  14. miocean

    Chat failures

    Hi Kamlesh, I had a similar issue. I disabled Java because I read there were problems with it. When I went to go on chat it wouldn't work so I installed it and reinstalled it with no success. I found I had to go into my system preferences and enable it. Now, if I can just coordinate my schedule to get into the chat sessions! Hope this helps, miocean
  15. Dear Anne, Welcome to the forums! I do not know the reason for the mysterious red dots under your nails, but like Shelley, the Puruvian textiles interest me. Not only because of the timing of handling them and the red spots but wondering what they look like (the textiles as well as the spots!) A great hint mentioned on these forums is to take pictures of spots, marks, rashes and the like because often by the time you get to the doctor they may have gone away. If you have any lingering marks and a camera, take a photo for your records, and if anything like it happens again, take more pictures. I am glad your symptoms have abated. I hope you will continue to post and visit the forum. With your experience of scleroderma you can help others who may be going through similar things that you have been through. miocean
  16. miocean

    Proper Introduction

    Horsemum, Welcome. I am sorry you are dealing with digital ulcers. That is one issue I haven't had to deal with but can imagine the pain and difficulty. I hope they heal for you. Jo, Thank you for finding the origin of the quote. And Amanda, thank you even more for your quote. It is definitely true that your life changes after scleroderma...and changes...and changes...unfortunately for many of us, just when we adjust to one thing another comes along, or we find things moving along rather smoothly for a while and then sclero decides to show its progressive side again. My thoughts are that we have to find joy in simple moments and peace in knowing we are doing the best we can wherever we are in our journey with this disease. miocean
  17. miocean

    Scared, need your advice

    Tiffany, I know a young girl who has POTS and it has restricted her life so much. I am sorry you have to deal with that and that you also lost your baby. Scleroderma is a difficult to diagnose disease and is based on symptoms more than the actual test numbers for diagnosis. There's a part of me that wants to tell you not to ask for more than what you've already got but I also know how frustrating it is to feel so badly and not be getting solutions. Best wishes, miocean
  18. miocean

    Dry Skin

    My salon uses honey and sea salt for the scrub they use for pedicures. I no longer get pedicures but it makes a nice exfoliant. Coconut oil is supposed to be excellent for everything from skin to hair. I tried it when my skin was so hard and itchy but it didn't work for me to stop the itching. Also, my bathroom tends to be a cooler room and the oil would solidify. I am going to try it again, though. The people I know who use it on their hair have beautiful hair. Years ago I used olive oil and vinegar, advice from a yoga instructor. I smelled like a salad! miocean
  19. Dear ajh, I sympathize with the itching as I know it can be intolerable. It is an issue many have sought help with over the years with no real answer. It is hit or miss with lotions, some may help a little. For me, after about five years the itching stopped. Some have used oatmeal baths but they did nothing for me but leave a mess in the tub. Try not to take really hot baths or showers, moisturize immediately after bathing, and if you can, bath less frequently. Also, invest in cheap backscratchers and keep them all over! Door jams work well, too. There are many different changes in skin pigment. I became unnaturally dark. I looked like I had been on vacation even in the winter with my light hair and eyes. I did spend time at the beach but was extremely careful and covered up. The darkness has gone away over the years as well. My skin was very hard all over, it has softened. All of this took about 5 years from onset. You are an inspiration for having dealt with this so long! miocean
  20. This has been a full "Not Medically Free" week between dealing with insurance, pharmacies, doctors, testing and not just for me this time but also for my husband who will be having surgery next week...we had so many CT scans and x-rays between the two of us that we must have been positively glowing!!! In a previous post I told you my pulmonary function had declined: total lung capacity went from 78% to 61%, diffusion dropped to 37%, I desaturated on the 6 Minute Walk Test. I am definitely more short of breath, especially on exertion, and am working on setting up oxygen therapy. Yesterday my scleroderma specialist called with the results of my chest CT scan. I have increased scarring on the lower lobe of my left lung. You know it's not good when you hear the words "I'm sorry" and "there's really nothing we can do." I have already tried cyclophosphamide and had a toxic reaction, ended up in the hospital for 4 days, and I am taking Myfortic for anti-rejection of my kidney transplant at the highest dose possible. The doctor said if I wasn't taking the Myfortic the scarring would probably be worse. The next step is another Right Heart Catherization (make that #3 for me) to check for Pulmonary Hypertension. This one will be different than the others I have had, it will be without dye, part of it will be done at rest and part while I am lifting saline bags with my hands. A new medical adventure! If it turns out I can add that to my list of secondary issues it will have to be treated with a drug that is compatible with my kidney transplant medications. Although very serious, in my mind this is overshadowed by my husband's surgery. He is having a canalplasty to open up the bones in his ear to correct a condition known as "surfer's ear" where skin and bone grow to protect the ear canal. He has lost hearing in that ear. We are going to the best Otologist in the area for this, highly recommended by a friend who had the same procedure. Although it is out-patient it will be the first time my husband is under general anesthesia and I am concerned about that. I would be interested in hearing from anyone who has had this type of heart catherization. I know several here are being treated for PH and have been reading past posts. The good news is my kidney is 3 years old and doing well!!!! miocean
  21. miocean

    Increase in Lung Scarring

    Hi Shelley, He has a little bit of hearing but not much as the packing is still in his ear. Right after the surgery he had no hearing so it is encouraging that he has a little! We go back in a couple of weeks to take the packing out. Our coping skills have improved. I know to speak in his good ear to say important things, or to touch him or make eye contact. He tries to sit so that his good ear is on the side of the person he is doing the majority of talking with. He is doing better at acknowledging he hears me, especially if he is driving and I am giving directions and I sit on his bad side in the car. We are hoping for a full recovery of his hearing. My colleague who had the same surgery for the same reason by the same doctor had his hearing restored and has been fine for over 10 years. He wears custom earplugs made by an audiologist in the water and that will be something we will do after my husband has the other ear done in the fall. In the meantime he is using silicon ear plugs and keeping the ear dry. miocean
  22. miocean

    Proper Introduction

    Shelley, I am going to challenge you on this one! Amanda's famous quote pre-dates 2011. In a June 2010 post I wrote "While I was on dialysis I would read Amanda's posts about how there is life after scleroderma..." I was on dialysis from 2004 to 2010 and remember Amanda saying something like "There is life after scleroderma. It might not be the life you expected..." Like Kaytee this sustained me more times than I can say and helps me get through my days. I did advanced searches on the forum using different criteria under both Amanda and myself and the furthest back I can find is my 2010 post. Amanda must have written it before that so the challenge is on to find the original post! miocean
  23. miocean

    Increase in Lung Scarring

    Thank you for your support and kindness. My husband's surgery went great, he doesn't have any hearing back because the ear is packed but he came through with flying colors. He had no pain and many stories to tell about having surgery (we have been through them all but it was his first time.) I contacted my scleroderma consultant regarding my recent tests and the verdict is to proceed with the right heart catherization but to also make an appointment with the pulmonologist at the scleroderma center. The decline in function and increased shortness of breath are probably due to the increased scarring but I should go ahead and rule out or be treated for pulmonary hypertension. I consult with consultants who tell me to consult! (I know I posted this response in a much longer version but it must have gone into the great void as I don't think it would have been flagged by the moderators.) It's been a long day as we had the follow up with my husband's surgeon early this morning and it is already tomorrow. I wish every doctor could be like her, an expert but warm and caring, no ego trip. miocean :emoticon-insomnia:
  24. miocean

    Going off Plaquenil

    Please keep us posted on Gareth, Margaret. ...a doctor actually read files?!? Mando, How are you feeling now? I hope you are feeling some relief now. miocean
  25. I empathize with you, Amanda. I hope you are feeling better and that you don't have to go into the hospital again. miocean