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Everything posted by Sheryl

  1. Sheryl

    In Need Of Encouragement

    I have also had problems with the dry eyes and mouth. I used everything prescribed and after about 6 months the problem eased up. That was this summer. So far, I don't seem to be bothered with that perticular problem. Some people get it and keep it. Others, it will come and go. Hopefully, it will ease up soon or just go away. Sheryl
  2. What about online physical therapy? Besides typing we could do leg, hip, ankle and feet flexes. That would be great if we could learn excercises from people that have had PTor OT. For those of us that don't have insurance that will pay for things like that we could learn what others are doing. I wouldn't want to take jobs away from professonials but we could learn some of the basics from each other. I know, I am out of line. After reading some of Barbs blogs I get that way. Barbs, I have been wondering what you have been up to. Its all right in the blogs. I just decided to check out what they were all about today. You are a stitch. I guess you were wondering why I haden't ponced on some of your stories. I just found them. And I see you are covering your tracks on alot of things you know I would comment about. Geese eating your water pipes outside. Why weren't they burried and were they PVC or some other sort of plastic. Enough, I want to be good today. I have been making cinnamon bread all morning. Strengthening my fingers and hands with all the kneading. I will pay the price later today or tomorrow for sure. My sons like to have homemade Cinnamon bread on the holiday. Now, I have to make enough for them, their wives and their children. My little family has grown. I hope to experience alot more growth, by staying well and keeping up with all of your wise information. Have a nice day everyone. Sheryl
  3. Sheryl

    Plaquenil Side Effects

    If it is Bacterial Overgrowth then only one or two antibotic pills will relieve the problem. After 10 tens your system is all cleared up. Things go back to normal. I have that problem about 3 times a year. Now, I just call the doctor and he prescribes the medicine for me if my symptoms are the same. If you let it go too long it will happen without a warning in advance. Also, while you are sound asleep. No warnings whatsoever. Sheryl
  4. Sheryl

    Dentures And Scleroderma

    Ok, I lost my front tooth to a tic by a wonderful foot ball pass when I was 13. I did catch the football. But, I also had to have alot of dental work. I have had my same cap all these years. It hasn't changed in color or texture in all these years. I love that it is a perfect match to my other teeth. I have had to have 3 root canals and caps just this year. I've used all my deductable as of June. So, the cap I got just a few weeks ago will be billed after the New Year. I hope the pattern doesn't continue. I also have TMJ and sleep with a mouth retainer type brace. My dentist feels it may just keep my upper jaw from ratical changes. I also asked about future false teeth. He thinks since my bone structure is strong I can continue getting caps as needed. Hopefully, the teeth won't loosen. We can spend alot of money on teeth and Doctor apts. Can't we.
  5. While Josh is recovering, you will have plenty of time to make many special memories. Enjoy that time of sharing and healing and bonding with each other. I am so glad you will be celebrating his life this Holiday Season. Life can be so short. Grab on and go where the flow takes you. :D Sheryl
  6. Sheryl


    Some of the terms my rheumatologist used were. FVC forced vital capacity. FEV1/FVC Forced Expiratory Value. FEF25-75 Mine was 0.52 Predicted was 2.71 Mine was quite low. Indicating airway obstruction. MVV Is used to indicate central airway disease. The FRC _RF_and TLC Pleth ones are for Overinflation of lung volumes. If those numbers or percentages are higher than Predicted. DLCO is the Oxygen from air to bloodstream. A reduced Diffusion(DLCO) Indicateds a severe loss of alveolar capillary surface. I will find out more on my PFT's when I see my rheumatologist. I thought my numbers were good but most were terrible. Raw is suppose to be less than 2.00 Mine was well over 4. Sgaw was suppose to be greater than 0.21 mine was 0.06 and my over inflation lung volumes were from RV pleth was suppose to be 1.45 and mine was 3.21 (221%) I know that isn't good. If I find out anything more I will let you know. Hopefully, this wasn't too confusing. Sheryl
  7. Sheryl

    Funny Sensation On Face

    I get the cob webs across my cheeks and lower jaw and lips. On a day that this happens it may happen several times that day. Then, I may go several days without this happening. I also get the spiders or itichies on my scalp. First I will lean over and brush my head with my hands. Knowing nothing is there but doing it anyways. Then I start itching and catch myself and try to stop. Usually, I can. Funny, all these different symptoms we have in common. Maybe we should start copying our posts and showing them to our doctors and they won't think we are quite crazy when we bring these things up. That's a thought. Sheryl
  8. Sweet. You go girl. Awesome of you to place your talents where they are greatly needed. Thanks. Sheryl
  9. Sheryl

    Hello To You All

    Jlf, I started a post and came back to make sure I had the letters of your name correct and lost my post. Anyways, I was stating that all of us here are friends seeking to help each other when we are down in our thoughts, feelings or just need emotional support. I don't know if you are currently taking any medicine for your gastroparesis but I was started on Welchol and that didn't work as well as I had hoped. Now, I am on Colestid and all my intense gastro problems are finally under control. Both of these medicines are through Prescription from your Doctor. I'm sure others on the forum have tried different products that work for them. These are the only two I have personally tried. Sheryl
  10. Sheryl

    I Got My Flu Shot

    I like your logic Mary. Sounds good to me. Sure hope you are finally feeling better. I haven't had any real flare ups of RA yet. So, I don't know what you have been dealing with. Sounds aweful. I had my flu shot on Friday. Nothing, strange happened to me this year. Last year I was weak after the shot, then got the flu a couple weeks later. doctor said it must be a different strain of flu. We keep trying to protect ourselves. My husband thinks people are nuts having strange virus' injected into our bodies to prevent illness, that we may not even get. Though he has never had the flu or anything else for that matter. Never even been to a Doctor. What a lucky guy. He has no clue what we are going through. Sheryl
  11. Sheryl

    Heartburn Relief?

    Erin, At least you tried to get something from your Doctor. If you have a regular family doctor maybe he would let you try some. For the time being though I guess buying the over the counter Prilosec will have to do you for now. Sheryl
  12. Sheryl


    I have been taking Reglan for about 1 1/2 years. I take it up to 4 times daily if I am have trouble. Usually, I take 3 daily. One right before laying down to go to sleep. Or within an hour of bedtime. I haven't had any side effects at all. It is the only thing that has been working for me. Of course if I decide to binge on PIZZA even that won't totally work. I take both Nexium and Reglan at the same time for two of the doses. Sheryl
  13. Sheryl

    Heartburn Relief?

    Hi Cathy, Read back on some of the previous posts. There are several meds that work for hearburn and indigestion. The most important thing is to take them exactly as prescribed. If it says one hour befor a meal and you take it 10 minutes before or during a meal it isn't going to work properly. The reason you are suppose to take most reflux meds 1 hour before eating is to start a secretion process of acids so that when you do put food in your stomach it will digest properly. Most reflux medicines will continue working for up to 5 hours if you take them in the proper time tables. Good luck. Sheryl
  14. Sheryl

    Question About Esophageal/throat Issues

    Irene, I have heard that people sometimes get teary eyed during the change of life years. I never had that particular delima, thankfully. Some of you that may start chewing gum, try to find a sugarless gum or if not sugarless then try not to use a spearmint or peppermint. Any mint flavored candy or flavoring is really bad if you have acid problems or reflux disease. I have to be reminded of this often. I LOVE eating mints or spearmint lemonade and gum. I really try to buy them and keep them out of my purse or house. Ha! Really hard since I don't eat chocolate. I need some good stuff once in awhile. Yumm! Sheryl
  15. Sheryl

    Question About Esophageal/throat Issues

    Tea is suppose to do magic when food feels stuck in your throat. Or you get choked while eating. I can't stand tea but it works especially in an emergency while eating at a restruant. Also 1 tsp regular or cider vinegar in a glass of cold or warm water seems to clear your throat. One of the easiest ways to get that teaspoon of bile or liquid up for me is to bend over like something is on the floor. No working at it at all. It come right up. Usually it will come up when I am sleeping also. I take one of my dr. prescribed Reglan and I am good for the rest of the night. Hope this tidbit of information helps someone. Sheryl
  16. Sheryl

    How Long Have You Been Diagnosed

    I was diagnosed January 2005 after years of different medical problems. I don't seem to be progressing much this past several months. Things seem to flare up and stick around for several months or weeks then disappear for a few weeks then come back. I feel much better on some of the medicines I'm taking at the moment. I don't know if we are ever in control of what is happening. Seems like we think we have something taken care of and something else pops up or things settle down and then come right back. My main symptom at the moment is my lungs. Inhalers aren't doing the trick anymore. I will know more after seeing my doctor on the 30 of November. My pft's weren't very good. Main symptom at diagnosis was severe bowel problems with gastro paresis, esophogeal (gerd), and carpal tunnel which required surgery. I am fighting severe itch and fight fatigue. If I take meds for the itch I am even more sleepy and fatigued. Yin and Yang. Mostly dental issues the past 6 months with the TMJ and trigeminal neuralgia, 2 root canals and 2 caps on what looked like perfectly good teeth, gone bezerk. Things are starting to settle down hopefully. We are getting some interesting comments and posts. We will all learn a lot through each other. Sheryl
  17. Sheryl

    Technical Board Question

    Good topic, I have been trying to figure out why I keep getting them also. I didn't realize you had to unclick it every time you send a post. That is a bit of a pain. Oh well! Such is life. I wouldn't think most people would want 3 to 10 Sclero.org posts on their regular email messages daily. My husband was asking about that the other day. I try to keep them deleted several times daily so that if he checks for more messages or is waiting for one he doesn't get a bunch of my downloads. Thanks for getting the answer to another topic solved. Sheryl
  18. Sheryl

    Carpal Tunnel Advice

    Hello Irene, I also had carpal tunnel. Mine was bi-lateral also. I had to wear my splints 16 hours or so daily. I bought ex - large kitchen gloves for working and clean up jobs. I ended up having to have surgery on only my left hand. The right hand finally got better just wearing the splints and giving my hands a couple months off all normal activites. Like knitting and crocheting and quilting. I would get sleep in two hour intervals because the numbness, pins and needles and just plain pain, would worry me so badly. I worried the Raynaud's would get worse also. So I went to bed with socks on (well still sleep in my socks) then my mouth gaurd in for the TMJ then I would put my wrist splints on and socks over my splints to keep my fingers warm. I was suffering with this one year ago. I had surgery last January. I still have some issues with my left hand but it is slowly getting better and at least that intense pain is now gone. I no longer have to wear the splints. When I had surgery on my left hand the right hand seemed to get better all on it own. Go Figure. I just started knitting again. Testing the waters so to speak. All seems to be going well. I will just not over do it. No holiday presents using my hands this year. Making sure they don't start acting up again. I felt I was going into battle everynight with all the armor. Well, I guess I was in a way. Not very apealing to my spouse but he was able to get through it. Ha! Good luck. Rest your hands in the splints as often as you can. Sheryl
  19. Sheryl

    Stem Cells Transplantation

    Kalin, No, I don't know but I wanted to have you keep us informed and up to date. Several people have talked about stem cell work but, no one that I know of so far has had it done. You are the first I have ever heard a response from. I sure hope it is Your Cure. Sheryl
  20. Sheryl

    Where To Go

    University of Michigan, 3 month wait for one doctor, and 6 to 9 months for another. If you are a severe case you will see both most likely. Good Luck in your search. I don't know where you live to tell you which is the closest.
  21. Sheryl

    Heartburn Relief?

    Erin, I think maybe, Janet meant to say that the Nexium helped clear her up 90%. Nexium is great if you use it correctly. If you call your doctor's office and tell them your concern maybe he will give you some samples or just call in a script for you. Usually, they have samples for you to try. They might not make you come in for an apt. Now, for the Reglan (metoclopramide) they may need you to come in for additional tests to see that your really need it. I was eating antacid tablets by the bottles. Before Nexium. I have tried almost all the scripts for GERD. Nexium and Reglan are tops. But it still took a couple months to get under control. They aren't an instant cure. I take 3 Nexium and 4 Reglan daily to control my problems. Sheryl
  22. Sheryl

    Scleroderma Expert Vs Rheumy

    I go to the University of Michigan Scleroderma Center. They are awesome doctors. Listening to your lungs doesn't always tell if you have a problem. I always passed that will flying colors. I did flunk out on the PFT's though. So, when I see my rheumatologist next month I will also see a pulmonary specialist with that apt. To discuss the situation. My primary care networks has a bunch of rheumies but none that specialize in sclero. But, I am still suppose to see one of them. That's a NOTA. So, I have to go out of network. My doctor wouldn't refer me to the rheumies at U of M. I go there and pay out of pocket. It is worth it to me. As long as I can afford it that is what I will do. Get your lungs checked. Very, Very important. Sheryl
  23. Sheryl

    Disability Insurance

    My sister gets a monthly check, just over $600.00. She had to have doctors letters of her condition and abilities and reasons for not being able to work. She had hospitalization reports also. That's all I can tell you. Sheryl
  24. Sheryl

    Lidocaine Patch

    Lidocaine patches are quite expensive. Patty, I can see you walking around with patches everywhere. One patch cut into 20 little pieces for each pain area. Usually, the patches are put in one or two locations for pain control. You can cut them and use a patch on say the back of your hand for hand pain. It only works in the exact area that you place it. Unless, someone has heard differently that is how I used them after a bad sprain and small surgery on my hand. Sheryl
  25. Sheryl

    Fibro Or Ra

    Vee, What does the rheumatologist want to put you on that isn't harmful to your lungs, but will still help the RA if tha is what it is? What do they say at U of M. I would go with their oppinion if it were me. Sure hope you find out soon to help you with all that swelling and the pain. I'm still on for lunch next Thurs. Any others in Michigan who want to catch up with us? This is great getting to meet new friends who are dealing with the same issues. We can hopefully, offer each other real arms for hugs and we can laugh and cry together if needed. Sheryl