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Everything posted by quiltfairy

  1. quiltfairy

    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.
  2. quiltfairy

    Some days.

    i just uploaded some pictures of Tony he does like getting his picture taken.
  3. quiltfairy


    From the album: as the sewing machine hums

    mariaha my husky and tony the poodle were looking for santa
  4. quiltfairy


    From the album: as the sewing machine hums

    tony muffin and another little dog I had and there puppy
  5. quiltfairy


    From the album: as the sewing machine hums

    tony my little survivor
  6. quiltfairy

    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:
  7. quiltfairy


    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.
  8. quiltfairy


    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.
  9. quiltfairy

    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.
  10. 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.
  11. quiltfairy


    side view by thumb
  12. red area on back nof hand there one day gone the next
  13. 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:
  14. Congrats Jo; great job!
  15. quiltfairy

    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.
  16. quiltfairy

    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.
  17. quiltfairy

    I did it!

    Thank you so much for the great responses. The support I feel is overwhelming.
  18. quiltfairy

    Moving from a warm climate to a cold climate

    May you have the best of luck here in the cold part of the USA.
  19. quiltfairy

    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.
  20. Welcome to the forum Thoughtpets. First off my Sclero dr. told me to drink plenty of water. I have a glass by my bedside as I wake in the night thirsty. Dehydration could be part of your heart problems. I also drink plenty of other liquids, it does seem to help. Second, you sound just like I did when I first got my diagnosis. I had a panic attack over every little thing. I learned from this site to stop panicking and to talk to my doctor. I have a dry cough, it feels like I want to bring up some phlegm but there is none that comes up. My Sclero dr. said I have lung involvement but not to worry about it as I am breathing ok for right now. I am no expert, I just have Scleroderma just like you, mine is Systemic Diffuse Scleroderma. I really hope you can relax and enjoy the holiday season.
  21. quiltfairy

    Moving from a warm climate to a cold climate

    I live in Iowa which is in the northern central United States. I also have Raynaud's, I have always loved the colder weather until I got scleroderma and Raynaud's. I have a fire place that was never finished so I put candles in it the first time the electricity went out in the winter. I found the candles do warm one room great. I also have a couple of oil burning lanterns that give off a lot of heat and stay plenty warm. When I go out I put on the long unders and a tshirt under a sweatshirt. I also have a goose down winter coat that is very warm and fur lined boots and warm thermal gloves. I go out in the winter in my power chair all around town in the cold days. I have thought about moving to the southern USA but have decided to stay right where I am for now as I have aging parents. If I were you I would follow my heart and go where I will and not let my diagnosis decide for me .I hope you make the right decision for you not for the doctors or the scleroderma.
  22. I called my news station this morning and told them about amazonsmile.com. They said this is newsworthy and were glad I called it in. I suggest we all call our favorite news station and help get the word out.
  23. quiltfairy

    Saw my neurosurgeon yesterday.

    I hope to have the surgery shortly after the first of the year. I take strong pain meds, it has helped most of the pain from the scleroderma but not the neck pain and there are times it is hard to get comfortable enough to sleep so I do hope it helps that. Thank you for your replies. Buttons it is nice to know I am not alone in this it gives me hope that things will get better.
  24. I had been having a lot of pain in my neck in 2008; I had a prosthetic disk put in c5-c6 in my neck and I have never been out of pain since then. Now the surgeon is going to remove that disk and do a fusion at that level; he is also going to remove all the bone spurs in my neck that has formed around the last surgery. First of all he has to contact my sclero specialist as he knows little about scleroderma and my sclero doctor has done all the tests recently that the neurosurgeon would need to do. I will be in a hospital instead of a surgery center as I have lung involvement with my scleroderma and am breathing in the 80% range. I am only the second sclero patient he has done this type of surgery on, so I am happy that he wants to consult with my sclero doctor. The surgery will not be until after the New Year, maybe January or February. I am just hoping that we do not have to work with workmens compensation this time as it can be a real headache until after the holidays as I have some family obligations. The original injury was from a work related incident in 2007; I had the neck injury and I also fractured my skull. The doctors think that is where the scleroderma came from, but so little is known about it I hope everyone here has a great holiday; I plan on not worrying about all of this until after the New Year.
  25. When people ask me why I am disabled I tell them I have scleroderma and give my best definition of what it is. I also ask that they donate to scleroderma and give them this website if they have any further questions.