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quiltfairy

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About quiltfairy

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    mapleton , Iowa

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  1. quiltfairy

    Burning face.

    I had a burning on my face and I thought that it was PTSD. There are meds that can cause this. I could not even put my face up in the shower, so a friend gave me a gel to exfoliate and get rid of all the dead skin that usually sheds off. I told my rheumatologist how it helped; I even got soft skin out of it and he said sometimes with scleroderma we don't have that happen because our sweat pores get plugged. I have that problem with my feet; I caused blisters and open sores as I started to use a Palma stone to remove the calluses off my feet. I also have a prescription to help open the sweat glands, then she suggested soaking my feet 2 to 3 times a week so now when I take a shower I plug my drain so I get a good soaking. You might try these, but please remember that this does not work for everyone. I send you a blessing.
  2. quiltfairy

    Full Recovery/Healing from Scleroderma?

    I am so glad your lungs are working better and I hope they keep going on strong. That reminds of a story my mom told me; she was having what she described as a rattle in her lungs (this had to be around 40 years ago, they didn't have MRI or any other such things) and the doctors could see it in xrays, so the doctor thought it was cancer and they removed 1/2 of her right lung. This tells me I am glad for medical care now. Anyway, back to the story - at one time or the other she had choked on a peanut and with all the coughing part of it stayed in her lung and as the body thought it was bad it encased the peanut! I'm just glad she got better; that says we have come a long way.
  3. quiltfairy

    Giving up.

    It seems like every three months when I go to one or more doctors they come up with something new. On Wednesday I went to the memory neurologist, he did a MRI of my brain and it scared me. After the MRI we now know what is causing the memory problems, the falls and not being able to come up with a word that I just can't get out . I have what is called (small vessel ischemic disease) and I found that it is mini strokes; as I understand at this is not a major problem (yet) and after the blood test at the last visit I found out I have kidney problems and my thyroid is under active. I don't want to go to Omaha any more, but all the test and MRI and x-rays are giving me some peace of mind. Some people think I'm crazy by saying now I know because I am like most people; I have a distorted imagination about what the tests are for and I am going to die today or wake up with tubes coming out of every orifice and some that are just there. I had to learn to laugh and not give up which I have done at times; the only thing about that is now I get to clean up the mess. I hope others keep their heads on straight.
  4. quiltfairy

    I missed this forum for a while.

    Thanks everyone for the great support replies. I am never alone as I always have the man upstairs.
  5. I had a few bad weeks; well a few bad months. I just wanted to get away. Sometimes it gets hard owning a house; so far things are starting to look up. I've been having memory trouble; I saw a memory neural specialist and I am having an MRI of my brain next week. I had severe head injuries, the last being the worst. I am still not sure what happened, although I was told what happened, which was in 2007 and I've been having a lot of headaches. I still have a dent in my head from it; I also broke my neck and nose and the company I was working for refused to let me go to a doctor. I was in Canada at the time. I don't remember most of the trip home but I must of made it. I was a solo flatbed driver. Sorry for the rant I will let everyone know what they find or don't find. I had a nice settlement, but it was not worth the pain and suffering I have every day. Some of the doctors think the scleroderma is from the fracture in my forehead. I just wish I could go back to work.
  6. Thank you for posting this. It has the possibility of helping many people I had the chance to sit in a group of supports that had a friend or family member that committed or attempted suicide. We worked on cognitive behavior. Every time I see my therapist she ask me that question, what I learned what prompted that question. She told me that I was one of the strongest people that she had ever worked with and that I am a typlcal peson that would attempt sucide because of the illness and coming from a background of emotional abuse. So the cognitive therapy has me once again alive. There's the great saying by Phil Donahue, "Suicide is a permanent solution to a temporary problem." I like to add that nothing is permanent. All we have to do is live today! I wish the best of luck to everyone.
  7. quiltfairy

    All of the above

    I am going to look for where a group of people lost a friend to lupus. On January 23rd they are have a bone marrow donation drive. I think that is a great thing and I saw the story on KTIV news station 4. I will look it up a little later.
  8. quiltfairy

    New question

    Thanks to the both of you. I did call my sclero doctor's nurse (my doctor at UNMC in Omaha) as he did tell me that it is in the high side of normal, but we do know I have peripheral neuropathy. He is a specialist; he not only treats scleroderma, but is the professor at the university of Nebraska. The first rheumatologist I had never had a scleroderma patients and he would not talk to me. When I started with him I was asked if it was ok for interns to be in the room; I said, how else would they learn? I only had problems with two of them; one did not have a good bed side manner, the other was really good but the only thing I had about him was that he had sores on his hands. As I look back I could have asked him to put on gloves and when I saw him the next time I was in the office, I suggested gloves. Anyway I could go on and on; doctors treat us for our illness, in return we teach them. That is how the world goes around and around. So for now I will keep all of us in my heart.
  9. quiltfairy

    New question

    I know I should not worry about this blood test; most of the time I know what they are or should be. My vitamin D for the first time is normal. The one that is the most troublesome is my creatine kinase (CK) went from 36 to 78. This test was run to figure out why I am falling and why my legs feel as though I have walked 100 miles going down my hallway and back. I used to stand for a long period of time; they have started to hurt and want to go out from under me. If anyone has this problem I would appreciate to know what they did. I do have peripheral neuropathy in both legs and arms and my sclero doctor is considering that might be the problem. I just do not know why my CK would jump that much in a year. Thank you Quiltfairy
  10. quiltfairy

    Stress.

    Thank you. The comments from my family are nothing new so I just close it out. I no longer go there alone and my aunt has learned the truth. And my therapist has done a lot to help me sort all of the rubbish out. This all started as a child, I now live 70 miles away from my family. When my mom passed away I thought it would quit, but it didn't. I have a new therapist; she is great. I will call her Monday and Wednesday. When I go to see my sclero doctor my aunt will be my driver; we have a good time, I always look forward to the drive. I always tell other people with scleroderma or other diseases to see a therapist; family and friends can blow up in your face simply because a lack of understanding. I send my blessings to everyone.
  11. quiltfairy

    Stress.

    My family had a barbecue today and I was not sure I wanted to go. I asked my dad how my son was doing and he said he was okay, so we had lunch. I went outside with my brother and sister in law and we were talking about this, that and the other. My brother said that we all knew it would happen. That is when I was told he is in prison for breaking and entering. I think the judge got tired of seeing him; he had his chances and the last Chance was 15 years suspended. I will not put on here what the charges were. I got a little angry when I was told that it happened a month ago. People are starting to understand when I say I do not feel like a family member.
  12. That is funny, my grand daughter always wanted me to make new clothes for her Barbie. I finally purchased her an American girlie 18 inch doll, much wiser to sew. I have been to Chicago a number of times, mostly to the meat market. I remember the one way street; to get to the place we had to go on a wrong way as it was the only way to get there. You had to creep across the bridge coming back out or you would top out your trailer. The guy I was instructing peeled the top of the trailer back to feet; thanks to the officer, he gave the guy a written warning and it could have been a lot worse, as we both could be sitting behind bars and not the kind you drink in. Thank you for for helping to bring to back so many good thoughts. I will be thinking about you and I send you my blessings.
  13. Hi Muffintop and Keevie, I was in a high pressure job; also I drove trucks in 48 states, Canada and a little of Mexico. I really enjoyed my job; there are not many jobs that while I was driving I got to enjoy seeing the sights. I got my first million mile award back in the early eighties. In 2007 I only needed about 5000 miles to get a second award when I got a hard hit in the head, but I think I had scleroderma a few years before that. I started having trouble pushing like I need to and most people can't believe I was getting sick. In 2007 I had a steele end of a securement strap hit me on the head. It fractured my skull and broke my neck and nose. I am alive from injuries from which I should have never lived, let alone driven back from Canada to South Dakota. The fatigue was getting at me and the joint pain; my doctors did a lot of tests and I have systemic diffuse scleroderma and a list of other things. I had to get a new driver's license and now I just have a plain old license . I feel for the job you do as it must be extremely difficult. I will keep you in my thoughts. I am now disabled; I am back to quilting and making dolls clothes. The one thing I have to share is find a good therapist it helps, also a good attorney to help with disability. Now I am through I send you my blessings.
  14. I had a head injury in 2007; 11 years later I still cannot remember or know for sure. I was in Canada when it happened and it left me with a dented head, a broken nose and the doctors said it was a closed head injury. I have trouble with short term memory. I sincerely hope I don't have Parkinson's disease, I have a long enough list of medical stuff! I will keep all in my heart and thoughts.
  15. Some days I just want to lie down and do nothing; other days I do what is in front of me. Not many people know why I moved 70 miles away from family, although I do have friends that know why I stay away from the family. When I go to family stuff I can't sleep or eat. What I am getting to is how family and emotions can do things to our health. I am in a lot of pain for a week before I go. I am working with my therapist and I am thinking I am going to go to mom's grave and ask her why she would say what she said to me before I was going into surgery. Some day I will let everyone know what she said. When emotions like these pop up, find someone to talk to or it will eat away at you, although there are many happy thoughts. I hope everyone lives for the happy days and can laugh until your stomach hurts and when sad tears are healing. So I send each one
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