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Everything posted by quiltfairy

  1. Welcome to the forum Thoughtpets. First off my Sclero dr. told me to drink plenty of water. I have a glass by my bedside as I wake in the night thirsty. Dehydration could be part of your heart problems. I also drink plenty of other liquids, it does seem to help. Second, you sound just like I did when I first got my diagnosis. I had a panic attack over every little thing. I learned from this site to stop panicking and to talk to my doctor. I have a dry cough, it feels like I want to bring up some phlegm but there is none that comes up. My Sclero dr. said I have lung involvement but not to worry about it as I am breathing ok for right now. I am no expert, I just have Scleroderma just like you, mine is Systemic Diffuse Scleroderma. I really hope you can relax and enjoy the holiday season.
  2. Moving from a warm climate to a cold climate

    I live in Iowa which is in the northern central United States. I also have Raynaud's, I have always loved the colder weather until I got scleroderma and Raynaud's. I have a fire place that was never finished so I put candles in it the first time the electricity went out in the winter. I found the candles do warm one room great. I also have a couple of oil burning lanterns that give off a lot of heat and stay plenty warm. When I go out I put on the long unders and a tshirt under a sweatshirt. I also have a goose down winter coat that is very warm and fur lined boots and warm thermal gloves. I go out in the winter in my power chair all around town in the cold days. I have thought about moving to the southern USA but have decided to stay right where I am for now as I have aging parents. If I were you I would follow my heart and go where I will and not let my diagnosis decide for me .I hope you make the right decision for you not for the doctors or the scleroderma.
  3. I called my news station this morning and told them about amazonsmile.com. They said this is newsworthy and were glad I called it in. I suggest we all call our favorite news station and help get the word out.
  4. I had been having a lot of pain in my neck in 2008; I had a prosthetic disk put in c5-c6 in my neck and I have never been out of pain since then. Now the surgeon is going to remove that disk and do a fusion at that level; he is also going to remove all the bone spurs in my neck that has formed around the last surgery. First of all he has to contact my sclero specialist as he knows little about scleroderma and my sclero doctor has done all the tests recently that the neurosurgeon would need to do. I will be in a hospital instead of a surgery center as I have lung involvement with my scleroderma and am breathing in the 80% range. I am only the second sclero patient he has done this type of surgery on, so I am happy that he wants to consult with my sclero doctor. The surgery will not be until after the New Year, maybe January or February. I am just hoping that we do not have to work with workmens compensation this time as it can be a real headache until after the holidays as I have some family obligations. The original injury was from a work related incident in 2007; I had the neck injury and I also fractured my skull. The doctors think that is where the scleroderma came from, but so little is known about it I hope everyone here has a great holiday; I plan on not worrying about all of this until after the New Year.
  5. Saw my neurosurgeon yesterday.

    I hope to have the surgery shortly after the first of the year. I take strong pain meds, it has helped most of the pain from the scleroderma but not the neck pain and there are times it is hard to get comfortable enough to sleep so I do hope it helps that. Thank you for your replies. Buttons it is nice to know I am not alone in this it gives me hope that things will get better.
  6. When people ask me why I am disabled I tell them I have scleroderma and give my best definition of what it is. I also ask that they donate to scleroderma and give them this website if they have any further questions.
  7. I saw my scleroderma doctor yesterday, it was a good appointment, things are much better than he thought. After all the tests he prescribed amitriptyline to help with muscle pain at night that was waking me from my sleep. He did say my lungs are involved but were doing ok. He did measurements of my heart through sonogram and said everything measures good and my heart was doing ok. He is going to do another pulmonary function test in a year but that my scleroderma was progressing slowly and he did not want to do any harsh treatments at this time like chemo or a stem cell transplant as that can be harder on the body than scleroderma can. He did not get to see the MRI but said that could change things real fast. I had that after my appointment so he said he would call me in about 5 days to let me know about that. So I am pleased with my appointment.
  8. Saw my Sclero doctor yesterday

    Yes, it has put me much more at ease than I was. The new pill is kinda working although I am still waking up in the night; it seems my bladder is not as strong as it used to be. I should have some answers to my MRI on Monday or Tuesday; my sclero doctor said he would call me in 5-6 days. Thank you all for your replies.
  9. Living in a small town it is somtimes hard for me to get the things I need so I often purchase them on Amazon. I signed up for Amazon Smile and told my family and friends about it. They are also going to sign up for amazonsmile.com. Thank you for letting us know about amazonsmile.com.
  10. Blood pressure problems

    Has anyone else had this problem? My systolic or upper number is good but my diastolic number is too high; running in the upper nineties and hundreds. I am not sure what is causing this; can anyone help?
  11. With Thanksgiving coming upon us, if you are like me I have a hard time with turkey; it is usually dry and with dry mouth to start with I have a hard time swallowing it. Here is a simple and easy to cure that problem: Cook the turkey as usual; after it is done place in the blender and add three tablespoons of flour and add milk for the amount of gravy you want; I usually add about 1 1/2 cups. Blend just until the turkey is blended with the milk and flour, return to the stove and cook until the gravy is as thick as you want. I use the pause button on my blender; doing the gravy in this matter you will not have lumps of flour. You can add seasonings to your taste.
  12. Is today the day?

    This is a poem that I wrote to express the feeling I am having: Is today the day? that I get another diagnosis. Is today the day? I have another test that my body is subjected to another xray, MRI,or some other form of radiation in a test. Is today the day? I have to make another hard decision about a treatment that could or could not save my life and make things better or worse. Is today the day? I awake from my sleep to find that my hands and feet are frozen in one position no longer able to move Is today the day? My family get that call that send everyone into devastation. NO ! Today is the day that I live and fight through this all. Today is the day That I have hope for a cure. Today is the day That I put one foot in front of the other and do what I can and look my doctors straight in the eye and I say I will live. Just for today.
  13. Oral Specialists

    I don't know about the bottoms, but I am sure that they will have to make a new top as my mouth is getting smaller, as this is one of the things we put up with Scleroderma and the top is getting quite tight and starting to cause some pain from pressure. The false teeth are much better than the pain I was having all the time, also a tooth would periodically fall out. At that time I did not know I had scleroderma, but the sclero doctor thinks I have had it for about ten years so that may have been why it was happening. I have started using Biotene moisturizing mouth spray for the dry mouth; it is really helping with the dry mouth and I like using it right before I go to sleep. My mouth does not get as dry at night. I have also heard about implants; I am going to ask my dentist about them. With the implants there are no dentures they are just like real teeth; I have a friend that has them and he loves them. He said they were much better than his plates, but I don't know if my insurance will cover them. Good luck on whatever you decide and please let me know.
  14. 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.
  15. 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?
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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
  23. 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
  24. 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
  25. 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.