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Everything posted by quiltfairy

  1. I started a new pain medication; my old one was no longer working, but I feel drugged up on this med. I can hardly move around and driving is not an option, so now I have to pay the bus to get to some place; luckily the grocery store is right across the street. I just don't know what to do; I am out of pain, but I hate this druggy feeling. Sorry for the complaining, I just needed to get it off my mind. I can get around to most places close by with my power chair, thank goodness.
  2. I did look up my rheumatologist. I found out that he does not normally treat Scleroderma so I have to look at other doctors in the area. I found a few in Omaha who treat Scleroderma and some in Sioux falls. I am going to ask my dad to check in Storm Lake where my parents, live then if I did not feel like driving home after a visit I would have a place to stay the night. I am going to talk to my G.P. on Wednesday and see if she knows anything about any of these doctors. My ex husband says he would drive me to Omaha but would not be able to drive in the city. I have friends there and could take a cab from my friends' or have them drive me from their house. So I am looking at all of my options. Thank all of you who responded, it helps and gives me other options
  3. There is a waiver program in Iowa that helps to modify homes and get people other assistances that the ill and disabled need . I was able to get a ramp put on my house and a wheel chair lift for my car; I am going to talk to them about a lift chair .If you are in need of this program just go to human services to get an application form; there is a two to three year waiting list . Another program is Vocational Rehabilitation and Education for Independent Living; they also help with the modifications. Both of these programs worked together to pay for the aluminum ramp; if any one would like the phone number for this program please send me a PM. This program also has a two to three year waiting list. quiltfairy
  4. Why I question my rheumatologist? That is easy when I go to see him he looks at my hands and face, looks at my chart and says I am doing fine and I am not going to change or add any medications. My general practitioner thinks I should be on an immunosuppressant and he is refusing to do so; he will not explain anything to me when I ask questions, just says I am doing good and walks out of the room, on the way out he says "come back in four months." I am just plain frustrated; I have had to get answers on the internet and I think I should get some from my doctor. My general practitioner is great; she is learning with me and I took her some copies of stuff from this site. She said it will help her and she is going to study the site, so she can help me and one other person with the same illness as me. Sorry to go on ranting and thank each of you for answers. I found out that University of Nebraska might be starting a scleroderma clinic, but I am not sure of that; I am going to call them in the morning and I will let everyone know for sure.
  5. I am just wondering if my rheumatologist really knows what he is doing with scleroderma. I've been going to see him for the last 4 months; he does blood tests; looks at my hands and face and says "you're doing good and I am not going to change any of your medications". For some reason I just don't trust his judgement. I am looking for a scleroderma specialist close to where I live; it seems the closest is Minnesota. I think he is at the Mayo Clinic but that would be a long trip for me to go see him and gas is very expensive right now and I am not sure if my medicaid would cover it, although I know the medicare part would. I am seeing my General Practitioner tomorrow after noon and will talk to her further about it. Thanks, quiltfairy
  6. I have tried and tried to quit smoking, but I just have been unable to do it; the most I have made it is 5 weeks. Does anyone have any ideas or suggestions? They would be appreciated! I do know from everything I have read that smoking is really bad for scleroderma and if I were to need a lung transplant they would not even consider it if I were smoking, so please help. Thanks, quiltfairy
  7. From the album: as the sewing machine hums

    side of the same quilt
  8. From the album: as the sewing machine hums

    this is just a scrap quilt I used it to help bring me back together after my divorce from my second husband
  9. quiltfairy


    From the album: as the sewing machine hums

    third quilt I ever made my aunt quilted this one for me she has a long arm sewing machine she passed from cancer shortly after doing this quilt
  10. From the album: as the sewing machine hums

    after I had sewen this quilt together mariah my husky had to show me that she liked it and she claimed it as hers one of these days I am going to do the quilting on it I just have to get the energy
  11. quiltfairy


    From the album: as the sewing machine hums

    my mother ordered this quilt she got to pick the pattern it took me a long time to make this quilt it was after the diagnosis of scleroderma when the fatigue was setting in
  12. quiltfairy


    From the album: as the sewing machine hums

    cross the first quilted wall hanging done totally by hand I wanted to experience how my grandmother would have done a quilt
  13. quiltfairy


    From the album: as the sewing machine hums

    birds singing
  14. I have low blood pressure especially when I first get up; sometimes it makes me dizzy. I don't think it is my medications as I am not on enough or the type that would cause this except maybe my antidepressant or pain meds but this is new; most of the time my blood pressure has been really good.
  15. I am looking for a scleroderma expert in my area but as of yet I am seeing a rheumatologist until I can find one. As I read things on this site it made me question whether he knew what he was talking about. I will look on this form to see if one is close by; it is getting hard for me to drive long distances, which seems funny to me as I was a long distance truck driver before all of this started up. Thank you
  16. I love making quilts and sewing of any kind when I have the energy to do it; I make a lot of doll clothes to donate to our giving tree at holiday time. I always liked working and improving the house but that has come to a stop with mobility issues. When I take a few pieces of material and make it into something great it makes me feel so good; everybody in the family wants one. I will post pics of some of my projects later.
  17. I use coffee cans for that stuff and the dogs get part of it as it is hard to cook for one person. The little stuff goes in the dishwasher with the dishes; my dishwasher has a garbage disposal in it so I don't have to pre wash the dishes, just scrape off the big chunks. I know the dogs love the scraps but it causes them to gain a lot of weight; my vet put Tony, my poodle, on a no table scraps diet but he cheats once in a while Mariah, my husky, has a touchy tummy so I have to be careful what I give her, so I have a coffee can by the sink with a small plastic bag in it so I can throw stuff out with the trash once a week.
  18. I have had Scleroderma for about 1 year; it has gone slow and my doctor says he hopes it stays slow, but he says "you never know about this." I have trouble swallowing; sometimes stuff just does not want to go down; sometimes it goes down the wrong way, is the best I can describe it. I have a lot of pain and am on medications for it; they only seem to work for me for about 6-12 months; my doctor is trying to get me on a slow release medication that will carry me through the night . I also have peripheral neuropathy and fibromyalgia but my sclero doctor thinks it's more the sclero than fibromyalgia. I had a neck and head injury in 2007 which is what the doctors think caused this when I did not fully recover and then I started to have trouble walking and was falling a lot; my neurologist started looking for answers and I had a lot of blood tests, xrays and MRI's; friends kid me about glowing in the dark! This website gave me an answer about what might be the trouble with swallowing so at the next appointment with my sclero doctor I will talk to him further about it. I did have a test on my throat which showed I have weak swallow muscles; I wonder if this could be the sclero? Many times the only thing that gets me through the pain is my faith and hope. I am a firm believer in education so I have decided to donate my body to the University of Iowa medical school and maybe through this one of the student doctors will find a cure or a way to make us more comfortable. My family is in full support of this. Thank you, quiltfairy
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