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About quiltfairy

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    Silver Member

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  • Location
    mapleton , Iowa

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  1. Diagnosis of Systemic Scleroderma

    I know how hard it is to live with this illness. Fatigue sets in a lot of the time, I know and I take a prescribed stimulate. At times I sleep good, other times I don't. I have been making quilts, badges and other stuff; it helps to fill the time. I live in a small town in Iowa and it is a two hour drive to see my sclero doctor; he is at UNMC in Omaha. I hope you have a good support system; for me, my family tells others that I am a hypochondriac. I was promised help from them, but I should have known I would not get any help. I suggest you find a friend you can talk to as it is very important to have that support. I was a professional truck driver; I have been in every state except California. My doctor is a rheumatologist, but I have been to doctors for lungs, heart, throat and memory. I am just going on and on, so I will stop writing and go to bed. Good night; I hope you get the a answer you need.
  2. Diagnosis of Systemic Scleroderma

    I can also suggest you apply for disability and food stamps and an attorney that helps with social security; they usually won't charge you. Until you get your disability they will take 30% of what you win. You will get backpay to either the day you applied or the start of the illness. The website is Social Security Administration (SSA) on the Disability Page. This is a great site for information. Now the next thing find a good therapist; it helps. And keep records of everything. I wish you the best outcome and I will keep you in my thoughts.
  3. Freezing toes.

    My toes are cold and sore most of the time and they have a tendency to get sores. Our little dime store here in town had toesy socks for 1 dollar, so I tried them; my sore toes no longer rub against other toes, cutting down on pain in my feet and the sores heal a lot faster I even wear them to bed; also when it is cold outside I put a regular pair of socks over the top of my toes which keeps them stay toasty warm. I send out good thoughts to everyone.
  4. I love eating fruit.

    There are more things a person can eat; I will not give into the disease. I also eat grilled cheese sandwiches poached eggs on toast I found not trying something is like giving up. I tried that; all I got from that was a trip to eating disorder treatment. Thank you for your answer.
  5. I love eating fruit.

    I have always liked fresh fruit, but having no teeth that is hard, but most food can be gummed enough to swallow. As this blank blank disease goes forward I have more trouble getting food down my throat. I was given a bag of blueberries; I looked at them and gave a look at my blender. I put the berries in the blender, added a little sugar and made a juice out of them. I still have cherries, so I am off to the kitchen. Yummy yum yum.
  6. Scleroderma Attitude.

    I have been following a woman that has scleroderma. She talks about her daily life; it seems a struggle to do regular hours work. As I follow this woman I see she has a good attitude and I am sure that she could keep smiling.
  7. Headaches.

    Thank you, my primary doctor was considering putting me in the hospital. I’m glad it was not as serious as I thought. I am learning a lot about things I never wanted to know, but I do now and some good, some bad. I stopped swearing in front of my grandson (the last of five) instead I say bless America. There is more and more to learn every day; I have a thought about that every day, I learn something new. It is a good day; I am kinda just rattling along this evening, friends know I do that on pain days.
  8. Headaches.

    For about two weeks I had a migraine that just would not quit. There was a lot of stress going on our family; there were 4 deaths of older aunts and uncles. One was expected, the others yes and no and so I thought that was causing the migraines. To my surprise that is not the cause of the migraines; just before bed I started coughing and choking and on the last choke out came a hard thing. That looked like one of my pills and that is what it was! It was covered with phlegm, so it had been there quite a long time and must have been sitting on a nerve. Migraines are gone!
  9. I do as much as I can to spread the word and I buy a lot from Amazon. Most of my friends and family have started using Amazon smile . I also have a Amazon prime that is still connected to smile with the prime. It saves shipping as I do not pay shipping costs. Here is another things that are big cost in saving. I try to find things to help me with every day jobs like a small washing machine. I had seen them on Amazon; my big washer broke so I just bought a small washing machine. I tell the delivery drivers about scleroderma My thoughts are with everyone on this site.
  10. Ideas for thought

    I was thinking about the items I make that help me through the day and maybe I could post the patterns with step by step instructions. Also others could post what helps them to make it through. If this is not acceptable, please let me know. Thank you and I send out my blessings to everyone.
  11. Dropping articles.

    I seem to be dropping a lot of stuff lately; anything from dishes to tablets to cell phones. Of course my husky likes it when I drop stuff that has food in it; that part is ok as she is a good floor cleaner. It is getting expensive buying cell phones and computer. On line stores seem to like it; it's 40 miles to the nearest store to buy those items and of course I buy refurbished and that has been a experience all its own. I hope I can get some help with this, please.
  12. I am 62 years old and still have hot flashes. My therapist said he could tell whenever I was having hot flashes; he said my face became bright red and my sclero medications effect that too. All I can suggest that you talk to your doctor or rheumatologist and have them do two blood tests. One for hormone levels, the other is vitamin D. As I was responding it made me think about things I also do when my levels are off. I will keep you in my thoughts.
  13. Ii started that about 2002; I went to my doctor and she did some blood tests and then she informed me I was getting older. I was in menopause; as I remember I was working at the dairy, it was cold and snow was falling down. My job was to put cases on the line that was about a week after my visit with my doctor. One of my supervisors asked if I was OK because I was working in 28 degrees and I had short sleeves. If I were you I would contact either my doctor or my rheumatologist. I hope the best for you and I will keep you in my thoughts.
  14. Jo Frowde: ISN Board of Directors

    I am so happy for you.
  15. 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.