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Everything posted by quiltfairy

  1. New to this disease..

    Thank you all for your kind thoughts. My next visit is set up but not with the same driver, my son can drive me and he can go in with me to take notes. He and his wife have volunteered to be bone marrow donors and I am pretty sure that my son will match as he is also O negative. His wife has also volunteered to do anything to help, I think she will be staying at my house and watching after the dogs. I have a husky mix and Shar Pei and since I cannot afford to kennel them it would be a great help. My aunt has also given me a solution, she lives about half way between here and there so I could spend one or two nights with her and her husband . Thanks for the warm hugs, they are greatly appreciated. I am sending some back to you :emoticons-thankyou: this is the best I could do I could not find the warm hugs.
  2. Hi Troy, I also have migraines; mine are subject to climate change and they are called cluster migraines and low light helps. Most of the time I go to bed and sleep for awhile, that seems to help me most. My doctor gave me a prescription of caffeine pills and it helped. Shelley had a lot of good advice; I hope they can help your wife at Johns Hopkins. I wish you and your wife the best.
  3. New to this disease..

    I saw the sclero doctor today; there was a lot to take in. He was concerned about the loss of hair on my arms, I am not sure why; he also talked about a bone marrow transplant for lung problems in December. I have more tests to determine exactly what form of Sclero I have; he is doing a MRI on my muscles to check for swelling inside the muscles and a pulmonary function test and also a echocardiogram for my heart. He was concerned about the problems with the muscles and that possibly they are not getting enough oxygen; now I am really scared. I had a driver but I really don't want him again; he talked all the way there and all the way back and he gave me no chance to process all the info on the way back with his insensitive talking about his past jobs. It wore me out worse than seeing the doctor; when I told him I wanted to take a nap in the van I laid my seat back and he talked even louder! I think he just want to hear himself talk. Sorry about the ranting.
  4. New to this disease..

    Thank you, I am sure things are going to get better. The way things have been going I have been wondering how much longer I can live alone and take care of this house. One day things are going great, the next I can hardly walk and it goes back and forth; this is why I am going for a second opinion. It cannot hurt and I hear that this doctor will work with my doctor here in Mapleton. I see this new doctor on Wednesday, than I see my neurologist the next week; I have two bone spurs in my neck where I had a previous surgery for a ruptured disc . The doctor is thinking that the bone spur is rubbing against my spinal cord and that is what is causing the headaches; it means more surgery but if it helps I guess I am willing.
  5. grandma

    I remember my first grandbaby; she was beautiful. I hope you have many memories of your grand baby and a lot of hugs.
  6. New to this disease..

    I have finally got used to the new medication and I finally got in with a rheumatologist that treats scleroderma down in Omaha at the University. Thank you for the answers and the support it is greatly appreciated that is for all of you that responded. It is starting to get cold around here so I have found all my gloves so maybe the Raynaud's won't be so bad this year.
  7. New to this disease..

    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.
  8. New to this disease..

    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
  9. Waiver program in Iowa.

    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
  10. 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
  11. New to this disease..

    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.
  12. 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
  13. My stuff 011

    From the album as the sewing machine hums

    side of the same quilt
  14. My stuff 114

    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
  15. 013

    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
  16. family And such 084

    From the album as the sewing machine hums

    baby quilt
  17. family And such 005

    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
  18. 023

    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
  19. 001

    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
  20. 077

    From the album as the sewing machine hums

    birds singing
  21. 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.
  22. New to this disease..

    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
  23. Hobbies

    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.
  24. 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.