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About quiltfairy

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    Silver Member

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  • Location
    mapleton , Iowa

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  1. Jo Frowde: ISN Board of Directors

    I am so happy for you.
  2. Ulcers on fingertips from Raynaud's.

    My grandmother didn't have what she said was the fancy stuff. She taught me how to make a poultice; it has worked for some time now, but I have not had digital ulcers. I have a few of the tricks I use from fixing a cut to getting rid of nasty bugs; I became more to use natural stuff after one of my puppies died after getting hold of a bug trap. Just like I always want to know about this scleroderma, I never want that to happen again to a animal or child. I apologize for going on too much.
  3. Tony had many friends as we were truckers going down the road and he knew where every rest area and truck stop was. I was trying to get ready, they knew they were going to go so I told them to watch; they did a good of watching and now it is just Mariah and me. Photos of them here May the one in our hearts be with us.
  4. Social Security Disability for Scleroderma

    I have been on disability since 2010; it took a long time to get it. I first filed in 2007 and I had a attorney throughout the whole process. You will probably be turned down the first time. I was not diagnosed with scleroderma till a year after I got my disability. I was injured at work; I suffered a closed head injury, broken nose and I broke my neck. With the injuries I had, I lost a lot of memories and still have short term memory loss. My doctors are not sure, but it could have caused the scleroderma. I have systemic diffuse scleroderma. According to the disability rules you have to quit your job for at least six months and have all your doctors write a statement about your illness and why you will not be able to work. They will also want a prognosis for how long you will not be able to return to work. The big thing for me is that I got a large settlement from work men's compensation so I bought a house and laid cash down for my house, so it took care of the money. If you have more than $2000 in the bank that will count against you. Start to keep track of every dime you spend by keeping the receipts. I had no problem with that one as I was a truck driver and I had to keep everything if I wanted reimbursement. I am sending you my blessings and hope that everything works out for you.
  5. Cigarettes

    I quit smoking 3 years ago and I will not lie. It was one of the hardest things I ever did, but I am glad I did it. When my scleroderma doctor told me if I needed a transplant heart lungs etc. I would not get it and I would die if I was still a smoker. My scleroderma doctor could not do a stem cell transplant because of smoking and I have a will to live, not die. Check with your doctor; there are support phone numbers and there is also free meds through the doctor, patches and other stuff.
  6. Tony and Mariah

    I have not posted this yet. Tony passed away in December. About two weeks before it was sad, yet good as I was with him and he died in my arms. I tell friends now he is chasing rabbits and cats and is no longer in pain. Mariaha did a lot of mourning; she would not come into the house until bed time. I felt sorry for her so I put a rug that was Tony's favourite place to sleep out on the porch and now it is Mariaha's favorite place to sleep when she is enjoying the sun.
  7. Doing OK; have not been here in awhile.

    Tony was seventeen and a half years old. I still have Mariah; she came to me with the tornado and she was born in my house. She is another maniacal dog as her mom was tied outside and her owner was at work at the time. That dog was found trapped in the dog house; she survived and six puppies were born three weeks later. The special thing about Mariah is she can predict seizure or if I'm having a breathing problem or when anything is wrong. I think she had a harder time with Tony's death; she woke me up when he had the first signs of it.
  8. I've been busy with quilting since I was last here; a lot has happened. First off I finally got my wheelchair ramp; they had to make a new door for it and took out the window. That is what is called a good gift. I am going out a lot more and you might say I found a new freedom. The second thing my mother passed away two years ago, my uncle passed away two days before the New Year that same year. My aunt that was such a support was the first to pass away; they say deaths in a family run in threes, that was not a very good year. Third thing was my Tony; he was a wonderful companion and a great watch dog. In April of last year his vet told me that he had prostrate cancer; I brought him home with pain meds to keep him comfortable. I was just hoping he would make it to his birthday; I got him his own cake and a steak cooked just right. He made it past his birthday to two weeks before holiday. I hope he is now at a peaceful rest. I finally found a good rheumatologist; he is at the University of Nebraska. He is the professor teaching scleroderma, so most of the time he has interns with him. He walked into the room, said I definitely had scleroderma and he is setting up with a team of doctors that all have an interest in scleroderma. I hope all are doing great.
  9. I also do not have morphea but I have dry skin that itches and at night it seems to itch more than the other times. I've started using a lotion to put on me when I have the itching I also started using a sensitive skin bath soap that seems to help dry skin and that you if you PM me I'll let you know what it is. Good luck to you. My blessings go with you.
  10. Soft soap for sensitive skin.

    I do believe that it usually is my female husky that starts the whole thing. She likes my towel so much I usually dry off in my bathroom then wrap the towel around me to get to my bedroom and that is a iffy thing because she tries to pull it off me. Good thing I live alone and she has not figured out how to open the curtains or the town Mapleton would get mooned. Thank you all and have a great day and I also send my blessings.
  11. Temperature control

    My house is a old house, but it has been insulated fairly well although there were still a lot of drafts. In 2013 I started to close the gaps. In Mapleton the city gives us insulating supplies and I am one of the people to make those supplies in my house. I stared with the doors; it seems every form of door insulation let in more cold air so I had plenty of fleece I cut it in strips and stapled it to the door frame and it worked great. Then next I saw that a company was doing some drywalling, so I asked if I could take some out of the dumpster and they said OK. I used that to close up the holes in my Attic that were open. Last two years I have been recaulking my windows. With scleroderma it takes a bit longer to do all the work, but it has been well worth it. I looked at my gas heating bill from 2012 and I almost went into shock; it was 294 dollars just for heat this year. I looked at my January heat bill, smiled, sat down and had a cup of coffee it was only $79 dollars! I think I succeeded with what I wanted to do. It has been often said I should have been the boy and my older brother the girls. I just have one piece of advice for everyone; do what you can, stop and take rest breakers and if any one has the courage to say anything look at them and smile, for all of us here know how hard it is to do little things. Bless each of you.
  12. Soft soap for sensitive skin.

    It may not be a soap but my skin gets clean and I smell better than I did at times. Can anyone figure it why my dogs love to rub all over my towel after I am through with it? Makes me laugh!
  13. I have tried many soaps and skin cleansers, but most of them caused irritation especially in private areas, thus I was only able to take one shower a week. I happened to find a soap for sensitive skin in the sales area of my local dollar store and I can take a shower every other day with this soap for sensitive skin. I have also learned to plug the bath tub while I take a shower that has helped keep my feet from breaking out in sores; it makes it much easier to walk around the house. Maybe we could start a thread for helpful hints like these. Bless each of you.
  14. Sad and happy news makes my emotions go wild. First sad, my son's fiancé lost the baby. Now the good news it is not cancer but sometimes it is so hard to be happy with this strange disease. I did find further news as to what the polyp might be; my older brother had TB as a young child and it might also mean that I also had a mild case. My scleroderma doctor is going to do some further testing. My dad and older brother have been going with me; dad was not able to for the past year as mom was so ill. She passed in August and I think dad is enjoying getting out of town. The thing I want to say though, is when the doctor said it was not cancer he had the biggest brightest smile on his face that I had not seen in a long time since mom got so ill. With that bless you all and may you all have a great weekend.
  15. Talk to text

    That is so true about enunciating the words properly, otherwise you're doing a lot of going backwards instead of going forwards. You can also get this feature on the new smartphones; I think my smartphone is smarter than I am but I can do a lot with that too. Bless you.