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quiltfairy

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Everything posted by quiltfairy

  1. Good job :emoticons-yes: :terrific: :emoticons-line-dance: :emoticons-clap:
  2. Need diagnosis! Please share your experience.

    I would definitely see a sclero specialist and not worry about symptoms that you do not have at this time. Your positive test could also be a false positive. I know it is hard not to worry; for me when I start to worry I can imagine all sorts of symptoms and things. I go to my doctor and find that nothing is wrong so I gave up worrying, it just makes everything worse . Are you seeing a therapist? I do, it helps me to deal with all that is going on with my body. I have systemic scleroderma, but that is the most I can tell you; it took doctors about three years to come up with the diagnosis which is quite common as it is one of the most difficult diseases to diagnosis. You are in the right place for support and let us know as symptoms change and any reports from your doctor. I will be thinking of you.
  3. Mammograms and PAPs

    Normal mammogram, what is that? Have never had one, and due to the results I have had 4 non cancerous cysts removed. I have always had normal pap smears, but I have also had a lot of yeast infections. They just drive me crazy so I guess it is different for everybody. I have also had two Cysts removed from my ovaries and lost a ovary with the last cyst as it was the size of a navel orange. I seem to have developed what my doctor calls non cancerous cysts all over my body. They are not very large but the doctor is watching them and in the last few years I have started to develop a lot of moles. None of them cancerous but it is quite frustrating because everytime I go to my general practitioner she sees something else. I stopped worrying about cancer. If I still worried about it my head would be spinning constantly. I simply have things checked out and then if there is something I will worry then.
  4. Total Hip Replacement Surgery (THR).

    Hi Joelf, Sorry to hear about your surgery; I hope you heal fast. I am on the mend from my neck surgery and doing good. Yes I do agree with you about hospital food; they kept bringing me stuff I could not eat as I had a terrible sore throat. Some of the food was even unrecognizable, but I am glad it tasted better than it looked. So please keep healing up and if okay Happy Holidays.
  5. It must be very scary having a daughter so young diagnosed with scleroderma; I know when I found out my grandson had autism and he had the type whereby children often do not survive past the age of ten years old, so my thoughts are with him every day. I kind of have an understanding but he is only a grandson I don't :emoticons-group-hug: know what I would do if he were my son so my heart goes out to you and your daughter. Balloons for your daughter to cheer her and flowers for you for being a great mom.
  6. Is this scleroderma? Unsure

    I can testify to anxiety. I have had it for many years. Some times I just need to step back and relax. I also have meds to help with anxiety. I would sugest seeing your primary care doctor and also seeing a therapist. It took me getting a broken neck injury at work to find out I had Systemic Scleroderma. I think the day I found out what was going on I cried most of that day and the next thinking my life was coming to a end. Yes this is a incurable disease but I will also have a long life . With the anxiety I had chest pain, trouble breathing and at times it even effected my vision and ability to do my job. Now before I go into the total panic thing, can't breathe, heart beating too fast, I take my prn meds and relax. Then I realize it is just anxiety. If the issue continues after I take my meds I know it is time to call my general practitioner or Scleroderma Doctor. So I would suggest a call to your doctor and see a Scleroderma Specialist
  7. I had my neck surgery Monday. I am still in hospital with fever. Tonight it went up to 104, so I have ice packs on to cool me down. I hope they figure this out soon.
  8. Neck surgery, then high fever

    I am home, I am home. It feels so good to be home and be able to do what I want. Thank you all for thinking about me. :emoticons-line-dance: :emoticons-clap: :emoticons-thankyou: :happy-dance:
  9. Neck surgery, then high fever

    Thanks for the flowers they always make a person feel better.
  10. New Pulmonologist

    I hope things keep getting better for you
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. Some days.

    i just uploaded some pictures of Tony he does like getting his picture taken.
  19. 001

    From the album as the sewing machine hums

    mariaha my husky and tony the poodle were looking for santa
  20. 012

    From the album as the sewing machine hums

    tony muffin and another little dog I had and there puppy
  21. 035

    From the album as the sewing machine hums

    tony my little survivor
  22. 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:
  23. 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.
  24. 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.
  25. 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.
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