quiltfairy

Members
  • Content count

    183
  • Joined

  • Last visited

Everything posted by quiltfairy

  1. red area on back nof hand there one day gone the next
  2. That is so cool to have been around for 17 years. I hope this site is around for another 17 years. It is nice to get good information instead of all the junk. When I found this site I thought I may only have a few months to a year to live. This site has helped to relieve my mind and to know I am going to be around for a long while. Thank you sclero.org :woohoo: :woohoo: :terrific: :emoticons-thankyou: :woohoo:
  3. Congrats Jo; great job!
  4. I would have come unglued; I also would have made a call to my attorney. I am glad you were able to hold it together.
  5. Yes, Shelley, I agree with you; smoking has been my best friend. It has never given up on me when others did, but now I have to say goodbye to it. I have a goal to see my grand kids again in my lifetime, as they were adopted out last year and so all I have to do is to see my grand kids in front of my casket. Sounds morbid but it seems to be working thus far. I also have two best friends, the four legged kind; Tony, my 11 year old poodle and Mariah, my 4 year old husky mix. Since I have quit they seem to want to be close to me instead of in another room; Tony, my poodle, has respiratory problems because of being attacked by a pit bull when he was just a little over a year old and his lungs sound so much better since I quit smoking. All I have to do is think that maybe I have been causing my poodle breathing problems; I want to be around to care for them and for them not wind up at the humane society. I also have friends that I can call day or night to keep from lighting up; as for the patch I am allergic to the adhesive on the tape so I will have to go without that. I cannot take varenicline because I get very angry and could hurt someone as I do not think when that happens. There is also gum, but I have false teeth and it sticks to my dental work and the way I have been feeling I don't want to go through this again, so with all my willpower and might, especially with the help from the man upstairs, I will make it. Thank you for your kind words.
  6. Thank you so much for the great responses. The support I feel is overwhelming.
  7. May you have the best of luck here in the cold part of the USA.
  8. A belated new year to each and every one of my sclero friends and may each one be blessed with the best health possible and for those that care for those of us that do not have the good health. Thank you for the last year that you have done for us. Bless each of you.
  9. I found this on another website; I am going to try to paste it here: IVIG may be worthwhile in treatment of refractory active Diffuse Scleroderma
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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?
  20. 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.
  21. 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.
  22. 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.
  23. 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.
  24. 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?
  25. 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.