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Everything posted by quiltfairy

  1. Feeling Discouraged

    Hi Miocean, I really understand your frustration; it seems this illness is nothing but frustration. I have been looking for answers to my pain for years; the doctors just don't have an answer, just giving me stronger pain meds and when one stops working we switch to another. Now I have a hard time staying asleep and have to move at night to stop the pain, but the pain meds do make the pain tolerable and make it much easier to function during the day to get done what I need to do. :emoticons-group-hug: Maybe this warm hug will help.
  2. Cold weather survival.

    I am not ready for all this cold weather, but I have a few suggestions. First, as a heat pad for me, I created rice bags. Small ones for my hands and feet, a large one for my back and legs . Warm winter gloves and a warm winter coat. I broke down last year and purchased a goose down coat; boy, is it warm! If you are not good at sewing a simple rice bag is made by filling a knee high sock with rice and then tie the end. You could use a pretty ribbon to tie it with then place in the microwave oven for 2-3 minutes. You may have to experiment to get the right temperature for you. Also most big chain stores carry hand warmers that you open, shake and they get hot. The warning to these are they get very hot and can cause minor burns on sensitive areas. The thing I enjoy about the rice socks is that they cool off through the night and there is less likelihood of causing severe burning as electric hot pads. Or for the wires to become trapped around a person. Nowadays you can also get heated sheets for your bed; I have night sweats so I don't like those but many people do Does anyone else have suggestions for this chilly weather survival?
  3. Is today the day?

    Thank you. I was feeling depressed and frustrated this morning so at those times I often write poems. It really helps me to understand myself.
  4. Waiting to see a rheumatologist

    They say it would have helped, but I only made it about twice then I started having car trouble and the speech therapist is 20 miles away. A friend finished her speech therapy and she said it worked great.
  5. Oral Specialists

    Yes, I did find it affected my taste at first but it has come back. I have had my dentures since 2010; my only problem as of late they are not fitting as good as they used to, so I need to go to my dentist and get them adjusted so they fit once again. It seems my lower jaw bone is getting smaller, so the dentures go down too far.
  6. Blood pressure problems

    Update on blood pressure. I saw my general practitioner yesterday she thought the problem is that my heart is beating too hard and too fast so she put me on a beta blocker med. for it.
  7. Waiting to see a rheumatologist

    Welcome to the forums. I also have trouble swallowing and food seems to get stuck; I had a barium swallow test and everything was going okay until I just could not take the taste of the barium any more, so they said I should have a endoscope but as of yet my doctor has not referred me. I hope everything goes well with the rest of your appointments. The test did show I have weak swallow muscles for which I was referred to a speech specialist. I also have Raynaud's; it can be horrible. I live in the northern part of the US and we normally have cold winters; I have thought of moving south, but my parents are getting on in the years so I am staying put.
  8. Oral Specialists

    My dentures are a full plate so I have nothing to put clips around. I have noticed though that since my diagnosis of scleroderma that my lower jaw is getting smaller, so I need to go in and get them adjusted; I think maybe the bone is being absorbed and I will have to talk to her about what to do about it as I was still pretty healthy when I had my teeth extracted. I make homemade caramels for the holiday season every year and I under cook them a little so they are a little less chewy. I just cannot resist the temptation.
  9. 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
  10. Oral Specialists

    I have also had a lot of dental problems. In 2010 I had all of my teeth removed and have dentures; they are not gleaming white, they matched my tooth color and I got to pick what color I wanted. That was cool! No tea with my toast. Once I got used to them eating is easier than it used to be with many missing teeth. I use a dental adhesive on my bottom teeth but my uppers are fine; the only problem is right after I eat I have to clean my dentures or it starts burning under my upper plate. I have also eaten caramels; they are very sticky but the adhesive helps. Good luck with yours; I hope you have a good experience
  11. New to this disease..

    The fear has been helped with this site because I now know what is going on with my body. When I was first diagnosed no one seemed to know anything about the illness just that it was a rare disease; I was really scared at that point not knowing what was going on. It is bad when your doctor does not know what to expect; she only had one other case of it so I got on the internet. Some of the things you can read can be very scary and I have found a lot of them to be untrue, so thank goodness for this site where I am learning the truth. I also gave this website to my doctor and my therapist and to the physical therapy department; they all said it was very informative. My son is taking time off work to take me to my next appointment; any others I have to drive to, I can stop half way and spend the night with my aunt. I had a talk with the young man that took me last time and he just did not seem to get it. He said he had a great time and was looking forward to my appointment in December. I informed him at that point that he would not be driving for me again; he also stated to me that the reason he drove was for him to go and visit a friend that worked at the university as I understand his parents are the same way. I also found out that he does not have a driver's license and that the one he showed me was a fake one. I have not reported that to the police but maybe I should. Thank you all for the responses; they have been very helpful :D :D :D :D
  12. Dried out throat

    My mouth is also very dry; I always have something to sip on beside me. If going anywhere I take water or pop with me. When my lungs get dry I have a funny raspy feeling in my chest. My doctor xrayed my chest and checked for infection; she found nothing and said I have dry lungs. I use a humidifier at night especially and I also use a spray in my mouth that is safe to swallow. Mints help a lot and encourage saliva production.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. grandma

    I remember my first grandbaby; she was beautiful. I hope you have many memories of your grand baby and a lot of hugs.
  18. 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.
  19. 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.
  20. 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
  21. 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
  22. 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
  23. 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.
  24. 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
  25. My stuff 011

    From the album as the sewing machine hums

    side of the same quilt