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pawndy

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About pawndy

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  1. When is it a good time to do a living will? I keep thinking I should do a living will. Then, I begin to think there is so much research being done that someone will discover a cure one day too late for me. I know this sounds crazy but medicine is discovering new treatments every day. I have scleroderma in my lungs, intestines, and now my liver. So, I am thinking it is time for me to make a decision.
  2. I want to Thank all of you for responding and it really helps. Yesterday, I had my second IV iron treatment. The doctor said that when my irons counts get high enough she is going to give me shots to counteract the effects of the Cytoxin. I wish I had written down the name of the medicine but I was falling asleep. I slept the entire time. Thanks again and I will stop expecting to see improvement quickly.
  3. I was referred to an Oncologist for the Anemia. This doctor ran blood work and told me that my hemoglobin was still dropping (now 9.1) and my iron count was 27 (normal 100). She put me on IV Iron treatment and I am to go back in 3 weeks to see if it jump started my system. My appointment is June 9 in one week. this did help the anemia and the muscle pain in my legs for about a week. Today, I feel worse than ever. All the muscles in my body are taking turns with pain and the edema is back in full force. Does treating the anemia and edema really help when it is a temporary fix? Does it hurt the body more to go back and forth (sort of like yo yo dieting; not good)? Thanks for your input.
  4. Soaring Eagle, yes I have pain and numbness in my legs, feet, hands, and right side of my face. In 2002 I almost died from a unidentified viral infection which left me with some damage.
  5. Soaring Eagle, the pain and numbness that you describe is very familiar to me. Sometimes my neck hurts so bad I have to use a travel pillow and lay my head on it sideways to relieve some of the pain. My doctor will give me oral pain medicine but keeps telling me that it is from Fibromyalgia not Scleroderma. I tend to not agree but as long as he gives the pain medicine I guess it does not matter. Does anyone have pain in the chest area and lungs? If I happen to take in a quick breath it will hurt to breath out and for a few minutes afterward.
  6. Boy, your history really sounds familiar. I started having problems in 2000 when I was diagnosised with hypothyroidism. Over the course of time; fibromyalgia, diabetis, arthritis, bursitis. neuropathy, restless legs, mixed connective tissue disease and of course the worst scheroderma. I still have chest pains that I do not have an explaination for except I fear it is the lungs. I think the scariest time was when I started having trouble breathing. It started out slowly over the course of a couple of years until I was to the point of being in the hospital in 2007 having a lung biopsy and heart cath. Then put on IV steriods (not sure what kind) for three days and then they sent me home on 100 mg of predinisone a day. I am finally off the prednisone as of about November 2009. I have a good family and I had a good job. They did not want me to quit and said they would do part of my job for me if I stayed but I knew that would wear thin quickly. I am glad you joined and I look forward to talking with you.
  7. Hi Dsly, I have the lung involvement. What were you original symptoms for the back problems besides pain? I am curious because I can not stand very long before my back knots up and I have to sit down. My daughter is checked periodically because she has Osteochronditis. I never connected this to any disease. She had one removed from her knee and one in her uterus. I guess I will have to do some reading. Please let us know how you are doing. Welcome to the group. Your friend, Pawndy
  8. Thank you for your warm welcome. The oxygen is not the only thing that keeps me from going out. I do have an electric chair and liquid oxygen to make it easier to go out. My family encourages me to get out more. I have severe pain in my legs, back and feet. I have had several embarassing things happen, while in public, just trying to get up from the table at restaurants. Going out is just not worth the effort or the pain. I have enjoyed reading the other post here and I have already learned new things. Again, I want to think everyone for their warm welcome. Pawndy
  9. I was on Cytoxin for over a year. Then I was put on Azathioprine. I have been on Azathioprine for a couple years. I was diagnosed with a fatty liver (NASH) about 8 years ago. I never drank alcohol; I never smoked; but I have been over weight most of my life. My liver tests are always off just a little but (according to the doctor) not enough to worry about. When I was put on Azathioprine the only thing the doctor told me to watch for new growths. He has never mentioned anything about watching my liver. Probably because he was already doing that. So I am really interested in finding out what the doctor tells you. I will hope your news will be good.
  10. I understand how hard it is not having a diagnosis. I too just wanted a name to put with how I felt. Now I have too many names. It took some time and several doctors before I had a diagnosis. Most doctors would just say it was my weight or I was just depressed. I was not taken seriously until I was hospitalized because I could not breathe. I hope you find the right doctor for you; you get the right diagnosis; get the right treatment soon. Your Friend Pawndy
  11. This is interesting. Maybe this explains why when I have a busy day; it takes me three days rest to recoup. Thanks for the information. Pawndy
  12. I joined to learn and this is the first thing I learned. I have red spots on my face and shoulders that appear and never go away. Since they do not bother me, except when people look at me funny, I have not asked the doctor about them. I will have to look up "Telangiectasias" and see if they are what I have. Thanks Snowbird I hope you find out what your red spots are.
  13. I have just read the Guidelines. I believe I will be comfortable with this site. Knowing that no swearing, false medical information, advertising or plain insulting anyone will be allowed.
  14. I am 56 years old and I have been sick now for quite some time. I have Scleroderma in my lungs. I have several more problems but Scleroderma is the worst of my problems. I have been on oxygen since 02/07. I am pretty much home bound. I have a good husband, four grown children, and seven grandchildren. I am joining because since I am pretty much homebound; the computer is where I have an outlet for outside friendships.
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