Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by bookworm

  1. Ann, you will love the Talking Books Program! I am a reading addict myself. I love mysteries. Good luck with the program. Let us know when you get started. Mary in Texas
  2. Hi Janey, My dad's vision was so bad,by the tiime we applied for the Talking Books program, that he needed the audio version. But, my 96 year old auntie also was in the program ,and she got the large-print books. I can't say enough good things about this program and usually, when I mention it, no one has ever heard of it. They don't seem to promote it at all. Your dad will love it! I forgot to say earlier that even the librarian, instead of a doctor, can sign a person's application, if he or she is familiar with the applicant. Mary in Texas
  3. Great idea, Jeannie! It also sounds like fun shopping for the little containers! Mary in Texas
  4. Thanks, Ann! No, no one has recently mentioned that I have a brilliant mind, but I love it! Mary in Texas
  5. I try to remember to carry my own wet wipes or sanitizing jel or liquid. Then you don't become the victim of strange sinks and blow-dry systems. Mary in Texas
  6. I just thought of another thing that would be helpful (in the United States) -- and it's absolutely free. Has anyone heard of the Taking Books Program of The National Library Service/The Library of Congress? It is for the blind and physically handicapped, and, as such, we are eligible. One just has to get a doctor's signature on a sheet you fill out about your disability. It is my understanding that almost anyone who could possibly need or use this program is eligible. Then you choose whether you want books on tape, braille or large print books. My dad had macular degeneration and he used the tapes for years. This agency sends you a special machine, free, to play your tapes and they send you a monthly catalog of books or tapes for you to make your selection. The books arrive, postage paid, and when you are ready to send them back, you just reverse a card on the front of the box they came in. Your address is on one side and the state library address is on the back. Drop them in a box or put them out for your mailman. The return postage is also free to you. You can get the information you need at your local library. Just ask about the Talking Books Program. Also you can get information on the program online, just search for it. My dad spent many happy hours listening to books on tape. They have every sort of book -- both fiction and non fiction, as well as newspapers and magazines. They have children and teen books, too. When new books by our favorite authors would come out, I'd call them and usually they already had the book or it was already ordered. They were in the process of going digital on the talking books. I thought some of you might be interested in this. Mary in Texas
  7. Hi Ann, You've already been given some good ideas. I'll add one. Look online for "reading aids" or "arthritis aids" and you will get catalogs for supplies for people with disabilities of one kind or another. I just looked at one such site and they had several different things, ranging in price from $7 to $139 for holding books! I've been thinking of getting one myself. I love to read and I don't know what I would do if I couldn't do it! I do sew, so I might just do one of the sewing projects, but the aids in the catalogs look great, too. Mary in Texas
  8. Hi Heather, I, too, have CREST and I also have an itchy,scaley, scabby scalp! Are you by chance on Prednisone or another immune supresant? I am on Prednisone, which unfortunately, opens one up to catching all sorts of things. What I caught or got was Psoriasis. I have been to a skin doctor and she gave me a prescription for a head treatment, as well as a prescription shampoo. These things help, but it seems to get better and then worse gain. I have been fighting this for over a year now. While taking Prednisone, I also once got a scalp fungus and had to take a pill for that. Fortunately, that cleared up pretty quickly! My advice would be see a doctor right away so it doesn't get worse, whatever it is! Your primary care doctor might treat it or she might send you to a skin specialist, as mine did. I don't think this is especially related to CREST, but it's related to Prednisone, which is related to CREST -- in my case! Mary in Texas
  9. Hi Wendy, I can't seem to finish this post! I don't know what I am doing wrong! Anyway, I also (about five years ago) began having GERD and trouble swallowing. It turned out that treatment GERD helped it as well as the trouble swallowing, as the two were related. Anyway, permanent damage can be done if you allow GERD to go untreated. Also, there are many things you can do to help your Raynauds. Be sure you stay warm -- not just your hands, but your whole self. There are a variety of hand warmers that can go into your pocket or that you can take along in the car. ALways wear gloves in the grocery store and try not to ever handle ice. In the frozen aisles, you need the gloves and also you need to get out of the frozen section as quickly as you can! Others can give you lots of advice on keeping warm. Mainly, I just wanted to say that if your doctor isn't treating the GERD and recommending things for the Raynauds, maybe you need to look around. It is so important that your doctor understands and knows something about Scleroderma. There are specialists listed on tis site from every state in the U.S. and in other countries, too. Good luck with all. I hope we all get to know you better. Mary in Texas
  10. Hi Wendy, and welcome to the Forums. I agree with everything that's been said. You didn't mention whether your specialist is treating your symptoms. I was diagnosed with CREST/Limited (which they call something else now) about 25 or 30 years ago. At the time, the only symptom I was having was Raynauds and the doctor advised me to wear gloves all the time. I didn't wear them all the time, but I did begin to wear them in the grocery store and cold places. Anyway, my disease didn't seem to change until about five years ago, when I got my first digital ulcer. I am now taking Cilais for that and I recommend it at the first signs of an ulcer!
  11. Hi Sarah, I'm 67 and going strong. I was diagnosed about 25 years ago and I am doing very well right now. I am on several medicines, including one for GERD, and I have good days and bad days, but the bad days usually aren't all that bad. Once your doctor gets you on some meds and your disease is under better control, you will be able to calm down and you will feel better for that alone! I'm glad you are quitting smoking. I quit after 40 years as a smoker. I did it by joining an online group and it was wonderful help. There are some groups listed on this site somewhere. One of those is the one I joined. It's good to have some quitting support! Hang in there! Mary in Texas
  12. Hi Debo, I take Celebrex every day as well as 5 mg. of Prednisone. Red, my rheumatologist told me I'd be on the Prednisone for the rest of my life and that we have to weigh the benefits to the side effects. She said she wasn't worried about it as long as it was around 3-5 mg. I think I would be in a wheelchair watching the grass grow if I didn't have the Prednisone. As it is, I am not in pain all day long every day and am pretty active. If you are in pain day in and day out, you have no quality of life. It becomes a struggle just to keep going. Until you get insurance, I would not push for a diagnosis on paper. In the past, insurance companies would just call it a pre-existing condition and refuse you insurance. With the new health plan, I don't know. This doesn't mean your doctor can't treat you as though you have Sclero and he/she seems to think that's what you have. Ask specifically for pain medicine if that's what you need. Tell the doctor what problems you are having. All they can do anyway is treat the symptoms. It's pretty important to treat rheumatoid arthritis early to prevent serious joint damage. Good luck! Mary in Texas
  13. Have you tried Viagra or Cialis to improve circulation in your fingers? Cialis works great for me. I haven't had a serious finger ulcer since I started taking it several years ago! I would certainly want to try all my options before having surgery -- but that's just me! I do know someone whose doctor immediately took her off her Cialis because he had never heard of treating scleroderma with it. It had just healed a major ulcer for her and saved her from amputation! I guess it would have been too much trouble for the new doctor to look it up! My friend had just moved to a new city (a large city, at that) and this was a new doctor. Whatever you decide, good luck. Mary in Texas
  14. Hi Angie, I can certainly understand what you mean! My fingers are stiff and bent, and I have no lips. I have a rash all over my face and a bad case of psoriasis that is due to taking Prednisone all the time- very low dose. I also understand your feeling that medicine can't help you, but I hope you will reconsider that. There is help available and I just believe that if you find the right doctor, you will get relief. Don't give up! Mary in Texas
  15. I thought I understood it, too, until I began reading! Mary in Texas
  16. Is Mixed Connective Tissue Disease actually one kind of Scleroderma? Or, is it something that sometimes comes along with Sclero? I don't have it, but was doing some reading and got a bit confused. Mary in Texas
  17. Summer, I agree with Craig: Get a new doctor! I have not been diagnosed with Sjogrens, but I think I probably have it. My mouth is often dry, but I just chalked that up to the fact that I never seem to drink enough water. What I began to notice was dry eyes and a painful stabbing in the left one. The stabbing scared me and I called my opthalmologist. He checked it out and said both eyes were very dry but the left one was VERY, VERY dry! I asked him if it had damaged my eyes. He said that it could and told me to get a certain over-the-counter eye drops and use them four times a day PLUS a heavier (than the drops)eye ointment to put in each night, and he told me to come back in a month so he could check on it. He seemed to take it quite seriously. I did ask if it could be Sjogrens and he said that it might be but that, his treatment would be the same for the eyes in any case. I did return in a month and he said the eyes looked much better and I already knew they felt much better. Only recently have I started waking up with a mouth so dry my tongue is stuck to the roof of my mouth. I figured it could be Sjogrens or the fact that my nose was a little bit stuffy and I thought I had probably been breathing through my mouth. What symptoms would someone notice if his lungs were being affected? I have been very short of breath lately. I also am anemic, though, and I realize that, too, could cause shortness of breath. Thanks everyone, Mary in Texas
  18. Congratulations, Shelley and Gene! Here are best wishes for a speedy recovery! Mary in Texas
  19. Hi Erika, I'm sorry about your elbow swelling. I haven't ever had swelling on the inside of my elbows, but I have horrible sore with swelling and drainage on the outside -- right on the elbow itself. I've actually had this for several years, but it practically goes away at times, then it gets worse. I have been told by doctors that it is a calcium deposit, that it is bursitis, that it is not a calcium deposit, etc. Get the picture? I don't know what it is and no one seems to know what to do about it. I've been told that surgery would help and I have been told absolutely not to let anyone cut on it! Sorry I couldn't be more help! Good luck with the rheumatologist in February! Have you seen your primary care doctor about this? I just wondered because you are really having to wait a long time to be seen by the rheumatologist! It seems serious enough that someone should see it sooner than that! Mary in Texas
  20. Hi Eos, I am so sorry to hear that you are about to have to do this. Have you tried Cialis or Viagra? I just told a friend here in Texas to ask her doctor about it. She was about to have three fingers amputated because of gangrene. She got on Cialis and within a few days her fingers were beginning to turn pink.
  21. bookworm


    Willow, Are you feeling any better? I hope you will get hold of a good doctor tomorrow -- preferably a pain management doctor. I have an appointment with my rheumatologist tomorrow and I am so hoping she can help me with the pain I am having in my right elbow. I am just about out of strength and endurance. I have some good pain meds, but when I am on them, I can't accomplish a thing! I'm just too groggy, Add that to the fact that I am so fatigued all the time, and all I do is sleep! Still, I'd rather be sleeping than hurting! I'm sure yu know what I mean! Good luck tomorrow! Make up your mind that you will get some help with this. Don't give up! Mary in Texas
  22. Good for You, Barfut! I don't see how anyone carries on and deals with scleroderma at the same time. My fatigue alone would make that a nightmare! Best of wishes to you! Mary in Texas
  23. Shelley, I did look up rheumatoid nodule on elbow. There was one picture that reminded me a ittle of my sore, but most of the other pictures I looked at looked far worse than mine!!!! Mine actually doesn't look bad! But it is, believe me! So I don't believe mine is a rheumatoid nodule, but I do intend to mention that name to my doctor tomorrow. Thanks, Mary in Texas
  24. Hi Lisa, That sounds just like my elbow. I have been putting a bandage on it with one of three things on the bandage: sulfasilverdine cream, a good ointment, or honey. The honey is supposed to draw and it does. Still, this just goes on and on. I am so eager to get to the doctor tomorrow, but I have a sinking feeling that it will do no good. As for draining it, I'm not letting anyone touch it! I had a doctor advise me that, with sclero, I need to be very cautious about having surgeries, biopsies drainings and so on because I don't heal well. At the time of his advice, three other doctors were urging me to have surgery to amputate my left index finger since it had gangrene. Thank goodness I didn't allow the surgery! The finger healed and even grew a new fingernail! (Okay, so it doesn't look quite normal -- at least it's mine!) My personal theory, based on my reading, is that this starts with a dry patch so from now on I am going to really lubricate my hands and elbows. I've been sleeping with gloves on my hands, which are covered with the good ointment (it's petroleum jelly based with some added ingredients). You mentioned that your sore seems to be draining from a dry patch, so maybe lubricants of some sort would help prevent this in the future. I don't know! If you find something that works well, please let me know! Mary in Texas
  25. Thanks Joelle. It's good to know I'm not the ony one with this elbow pain. I think Bactriban is a really strong antibiotic. Right? Let me know if it works! I have taken a round of oral antibiotics -- some sulfer drug. It did knock back some swelling and redness, but the sore itself remained. I also have trouble brushing my teeth, my hair and lots of other things, since I, too, am right handed. I will let you know what the doctor says Monday. Mary in Texas
  • Create New...