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Everything posted by quiltfairy

  1. US disability form question

    I am disabled and it took about 4 years to get it. A person usually has two denials, then a court hearing. I would suggest you call a disability attorney; they usually only charge if you receive the disability, otherwise they do not charge. Anyway, that is the way it works in most states; they take their percentage out of your settlement or back pay before you even get your first check. If you have any other questions about how it works let us know.
  2. I got a call from my sclero doctor today, all my blood tests were negative. No Hepatitis B or C. Lupus test was also negative, although my CT scan of my lungs was not so good. I have nodes in my lungs an they are not certain what they are but I do not seem to have any bad lung disease. The nodes are common in scleroderma. I also do not have the emphysema that the doctor in another town told me I have. He misread the CT but of course that happens in small towns and that is why I go to the city to see the specialist.
  3. New Pulmonologist

    I really hope your new doctor is the right fit for you; I know how frustrating it can be to get the right doctor. I am send the kitten to purr and bring comfort and the flowers to brighten your day. Bless you.
  4. Mostly good news from my sclero doctor today.

    Yes I can definitely agree with you . I almost forgot my neck surgery has been rescheduled for March 23rd; I will be glad to have that out of the way if no other emergencies happen with the family.
  5. I simply told my brother I would change places with him any day. I would love to be putting in my 40 hours a week and he could sit home on disability trying his best to cope with a disease like I have. He did not seem to want to do that.
  6. Hi My scleroderma has also been slow, all I can say about is that I am thankful for that. I do have swelling in my hands, my joints ache most of the time, but I am thankful because I can still do as I wish for my sewing projects. I also have diffuse, any way that is what my doctor said. I used to think that this was a death sentence, I worried about how the disease was progressing and if it did not follow the book my doctor, was getting a call. I have calmed down now, this is not a death sentence but it is a little uncomfortable. Only problem with it being slow is that my brother calls me an hypochondriac because he hears about the illness but he cannot see it. My hope above all else is that your scleroderma and everyone elses slows down to a crawl.
  7. Some days.

    Some days I just want to give up and give in to this illness; then I let my poodle out and watch him in this snow. It is hard after a couple of days melting and refreezing and has deep holes in it and yet my little Tony shows no fear; he keeps trotting through it and never gives up. He seems to go to the worst parts of the yard and keeps persevering some days; that is what keeps me going . I think about all that poor Tony has been through at about one year old; he had a pit bull attack him, he had major surgery and came through it. At the time I was driving a truck, so I had to leave him in a strange town so sick I did not even know if he would survive. Luckily my parents had fallen in love with him and went to pick him up and bring him home; he was ready to get back in the truck before his stitches were even out. He was able to get back in the truck 6 weeks later and he was the happy dog I had always known . Last year he had a bad stroke and the vet wanted me to put him down, but I just could not; I saw that spark in his eyes that he still had a will to live and go on. I even had fights with my family over keeping him alive; I kept telling everyone that we don't put down our people that have strokes. It took about 8 months before he was back to his old self; he had to relearn his name, where is the right place to go potty and where his food and water are, but then again he has a lot of perseverance. Now you would never know it happened; this year he will celebrate 12 human years and going strong. So you see, I just look at his little life when I want to give up; like him I keep going because if a little poodle can do that, so can I.
  8. Some days.

    i just uploaded some pictures of Tony he does like getting his picture taken.
  9. 001

    From the album as the sewing machine hums

    mariaha my husky and tony the poodle were looking for santa
  10. 012

    From the album as the sewing machine hums

    tony muffin and another little dog I had and there puppy
  11. 035

    From the album as the sewing machine hums

    tony my little survivor
  12. New and Improved Chat Room!

    That is cool! The reason I have never been in a chat is that my computer is also temperamental at times now. Maybe I will be able to get into the chat. Thank :emoticons-line-dance: you for fixing it :emoticons-clap: :emoticons-clap: :terrific:
  13. Update.

    I saw my sclero doctor Wednesday; it was again a good appointment. He is doing more tests for stuff that can cross over and for other stuff, but the one that confused me was when he first said it was for Hepatitis B and C. I asked him why and he said it was because I was from an area that had had a tornado in the last 5 years (well four years to be exact) and he had discovered that the tornado had gone through our sewer system, so to be on the safe side it would be a good idea. I did not have much damage; all I had to do was replace my roof and air conditioner and I had to wash my house. I did get a lung infection that seemed to go through the whole town; my doctor thought it was because of the sewer stuff all over all the houses.Anyway back to my appointment; he also checked for Lupus as I have a few signs of that. Then I did another CAT scan for my lungs; he is a little worried about them as my breathing is on the lowest part of normal and that is one thing that seems to change rather quickly with scleroderma. My sclero doctor thinks the thing with my hand getting red, swollen and hot to the touch is an allergy to something so he put me on a strong antihistamine to make sure that it does not affect my breathing. The trip to Omaha was quite nice this time as I drove myself and had lunch with a long time friend I had not seen for a couple of years. Coming home I was able to drop off my sewing machine at the shop to get it fixed and I also took time to have coffee with my aunt and uncle, so all in all it was a great trip.
  14. Update.

    I never used to be scared when a storm brewed itself up, but that has changed now. When a spring storm brews I make sure I have all my safety supplies in the basement, but the thing that scares me the most now is when the town blares the tornado sirens. Every first Monday of the month they go off for seven minutes. The one great thing about our town is we had no fatalities or major injuries; just one broken leg and a premature baby by four weeks. We are the only town that can brag that for a EF-3 tornado, even that it took one third of our town.
  15. Coming back after a while

    Hi Kamlesh, I also suffer with neuropathy pain at times; it just seems to drive me crazy, at other times it is much better. My doctor started me on a new pain medication; it takes care of the pain better then any others I have taken and the side effects are less severe than many of the others. My faith is also what keeps me going. I also have projects that help; I am a quilter and when I am sewing I am not thinking about the pain. I also do a heat treatment every night before bed; I put it on my back for 30 minutes, then my legs for another 30; it does help a lot. Bless you and good luck.
  16. Update on how I am doing. I keep getting large red areas on my left hand; they swell, are hot to the touch, but there is no pain associated with it. I took pictures of it for my doctor since it happened on a Friday and the clinic was closed until Monday. The strange thing is the spots that look painful are gone the next day. I had a flare up that she saw the other day when I went in to get a script from her; she saw my face, I have the same thing in my cheeks. She says that it looks like lupus; she is going to send a note to my sclero doctor and let him know because he thinks I have something going on besides scleroderma that is involving my muscles more than just scleroderma should be. This disease is so funny with all its waxes and wanes; a person never knows what is around the corner it seems everyone's symptoms are different. I also have fluid in my ears; it just seems to happen since my head injury in 2008 but the doctor is not sure if it is the sclero or not. Just a frustrating thing as when it happens I can not do much of anything because I get dizzy and could fall. My doctor says I am a real challenge for her and a good learning experience. Oh, with the ear thing there is no swelling or infection, my body just has a mind of its own. Other than all this strange stuff I am working on a quilt trying to get it done; it is slow work as I tire easily but I am persistent. I hope everyone is doing good; my blessings to each of you.
  17. 004

    side view by thumb
  18. red area on back nof hand there one day gone the next
  19. That is so cool to have been around for 17 years. I hope this site is around for another 17 years. It is nice to get good information instead of all the junk. When I found this site I thought I may only have a few months to a year to live. This site has helped to relieve my mind and to know I am going to be around for a long while. Thank you sclero.org :woohoo: :woohoo: :terrific: :emoticons-thankyou: :woohoo:
  20. Congrats Jo; great job!
  21. I Should Have Seen It Coming

    I would have come unglued; I also would have made a call to my attorney. I am glad you were able to hold it together.
  22. I did it!

    Yes, Shelley, I agree with you; smoking has been my best friend. It has never given up on me when others did, but now I have to say goodbye to it. I have a goal to see my grand kids again in my lifetime, as they were adopted out last year and so all I have to do is to see my grand kids in front of my casket. Sounds morbid but it seems to be working thus far. I also have two best friends, the four legged kind; Tony, my 11 year old poodle and Mariah, my 4 year old husky mix. Since I have quit they seem to want to be close to me instead of in another room; Tony, my poodle, has respiratory problems because of being attacked by a pit bull when he was just a little over a year old and his lungs sound so much better since I quit smoking. All I have to do is think that maybe I have been causing my poodle breathing problems; I want to be around to care for them and for them not wind up at the humane society. I also have friends that I can call day or night to keep from lighting up; as for the patch I am allergic to the adhesive on the tape so I will have to go without that. I cannot take varenicline because I get very angry and could hurt someone as I do not think when that happens. There is also gum, but I have false teeth and it sticks to my dental work and the way I have been feeling I don't want to go through this again, so with all my willpower and might, especially with the help from the man upstairs, I will make it. Thank you for your kind words.
  23. I did it!

    Thank you so much for the great responses. The support I feel is overwhelming.
  24. Moving from a warm climate to a cold climate

    May you have the best of luck here in the cold part of the USA.
  25. Happy New Year

    A belated new year to each and every one of my sclero friends and may each one be blessed with the best health possible and for those that care for those of us that do not have the good health. Thank you for the last year that you have done for us. Bless each of you.