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Everything posted by Sheryl

  1. Sheryl


    enjoy the ride, Looks like you enjoyed the time with your friends. Being part of your friends good times is a tribute. It is also a tribute that you have gone as long as you have without smoking. I just hope you aren't tormented for the next 15 months into wanting another one to satisfy this new urge. It seems when a person just has one they end up sneaking another then another. Maybe you have survived this long and can turn your back and not pick up another one. The work has been done. You have succeeded in your original task of quiting. Keep your self as healthy as you can. Next time you are out just say to yourself. Yeap, I could have one but I might not get away with it so easily next time, so I don't really want one bad enough to take the chance. Your friends will care more that you are well and out with them than any thing else. I am glad you enjoyed the smoke without it getting you. Now, take a deep nasal breath in through your nose. Let it out through your mouth. Build up and strengthen your lungs, with this exercise. If you are worried about your lungs you should have a baseline CT scan. This way your doctor's will be able to see any changes readily in the future. It wouldn't hurt to have PFT's done at least once every 9 months to check the functioning and flow of air in and out of those precious pieces of equipment. All for now. Looks like we may be done with lecturing even though you may not have needed it. It helps us.
  2. Sheryl

    Tired and confused

    Welcome to our ISN forums Northendpoet. You have come to the right place to learn and ask your questions. Many doctors today don't seem to what to make a diagnosis in our charts for some reason. It can take a few years for symptoms to fall into place enough for you to be given a name for your illness. Some doctor's have only seen a couple severe cases in their lives or none at all. So, they are on a fact finding hunt the same as yourself. Doctor's just want to deal with the issues at hand sometimes and don't see the overall picture until enough symptoms fall into place. Keep working out and using your energy to strengthen your body. Fatigue is something we are all dealing with on a daily, weekly or monthly basis. Keep learning and you will have a heads up when symptoms start to arise. Many people here in the forum have negative results and still have Scleroderma or Lupus. Sometimes positive results are when a person is in a big flare up of some sort. So don't worry about results. Go with how you are feeling. Write things down and when you have appointments you can bring up these symptoms to your physician. I am off to play a bit of tennis this morning. Catch you later today.
  3. Sheryl


    Sandra, welcome to our forum. Sorry to hear what is going on with your teeth. I had the same type thing happen to mine. My teeth also crumbled and after having 4 root canals and new pearly whites added,things seemed to slow down for me. I had dry eyes and mouth for about a year which also decided to calm down and eventually go away. Amazing what happens with this disease the facial pain also decided to leave. I have been pretty happy about that. Keep us informed on your results of the Schirmer testing. Let us know how you are doing with anything else going on in your system.
  4. Sheryl

    Oropharyngeal dysphagia

    These things may be old wives tales but, they have always worked for members in our family whom have these choking and swallowing problems. 1. A few sips of hot tea when this happens. 2. A glass of water with a tablespoon of apple cider vinegar stirred in it. Drink a couple sips of that. 3. I don't seem to have to many issues with the choking because I always have hot water next to my meal. It is as hot as a cup of coffee. I drink that with most of my meals. Plus, it really clears the throat of debris and makes eating easier. Once you get use to drinking the hot water it seems so natural. No calories either. My two cents for today.
  5. Sheryl

    Sclero vs side effects & high blood pressure

    Amanda, my doctor told me he watches the bottom number. If it is over 92 he keeps and eye on it. Over 95 he would put me on medications. That is my regular family physician. Check it and if you feel dizzy or faint or have buzzing in your ears then check your blood pressure. If the bottom number stays above 95 then you should consult with your physicans nurse or make an appointment for followup.
  6. Sheryl

    Bad bad doctor

    You girls sure look thin in your avatars. All thin and sleek in everything from PJ's to formal gowns. They are much better than pictures of the real deal. Lyn welcome to our forums. You will fit right in with all of us. Ask your questions. If we can help in any way we will do our best to prepare you for futured visits to your different doctors.
  7. Wendi, welcome to our Sclero Forums group. You can ask any questions you feel you would like some input on from others. It can take several years for an accurate diagnosis. Once you have one autoimmune disease others seem to follow. I hope your next appointment goes much better. Most doctors just take care of each ailment as it comes into play. Once things fall into a proper order or tests confirm certain findings then you will get a diagnosis.
  8. Sheryl

    Scleroderma and Diet

    Summer, I find that if I stay away from fried foods and some types of seafoods I do quite well. I have ongoing issues throughout the year. I just do my best to write down what I have eaten in a 24 hour peroid prior to and during times of distress. That way when I talk to my physician he can prescribe something if needed or run the appropiate tests to see what is going on.
  9. Sheryl

    Chat Room

    Thanks Shelley for reloading the chat room software so we could use it this evening. I apologize to those who weren't able to get into the chat room this evening. We were able to get in about 9:40 and hopefully we are set to go on our new forum. Hopefully, I will see many of you next Sunday night in the Chat.
  10. Sheryl

    Chat Room

    I hope some of you have been able to get into the chat room. I still am unable to moderate or visit the chat room at this time. Hopefully, by next Sunday the Sunday Night Chat Forum will be up and running.
  11. Sheryl

    I start my new 24/7 drug Tommorrow

    LadyDi, I am happy to hear that you are home and did well. It's good to know that someone is there helping you mix your Flolan and help you out until you gain some strength. Hopefully, you will continue to have help offered even after you are feeling better so that you can rest and regroup. Thank you for keeping us informed on your well being. Hugs, B)
  12. Sheryl

    I start my new 24/7 drug Tommorrow

    LadyDi, I hope you have great success with this new treatment. Please keep us informed on your well being.
  13. Sheryl


    I have problems several times yearly with gastroparesis. Usually, I am able to keep my systems in check but not always does my body do as I wish it to. I have not had weight loss due to the paresis. For me that would be a good thing. I gained with this disease but am steadily slowly loosing a few pounds every couple months.
  14. Sheryl

    Adaptive Devices

    Shelley have you ever owned a pair of electric scissors? I bought a pair years ago and use them all the time for fabrics. I guess one day I should buy another pair for paper products so I can cut things with ease. I will check out the battery operated ones though. The price sounds pretty nice.
  15. Sheryl

    TV Star?

    Barb, so glad you are having a wonderful time with the radio station. I hope the filming goes well and you get the chance to have a place in this film. Keep us informed on your well being every so often. It is good to hear from you once in awhile. Thanks for keeping in touch and enjoy your excitement, it is something that will keep your energies up a bit.
  16. Sheryl

    Trial for Dasatinib

    Angel Sky, I hope all went well with your surgery today. When you feel up to it let all of us know that you survived another ordeal. I have been thinking about you and hope you bounce back quickly. Keep in touch.
  17. Sheryl

    HI...I'm new.

    Hello Mollie and welcome to Sclero Forums. I am taking Reglan and have been taking it for about 7 years now. Also, I take 6 Colestid capsules to help with Gastroparesis. I don't have any problems with Reglan. I have a couple girlfriends taking it also whom haven't had any issues with it. What are you taking to help you at the moment? Feel free to ask your questions or write to any of us individually. We will do our best to answer you if we have been there and done that so to speak. I'm happy you decided to join our group.
  18. Sheryl

    Raynaud's questions and concerns

    Good morning Sally Forth. I hope you get many replies on how to continue your sport without causing to much damage to the vessels in your hands. Winter and cold temperatures in general can be hard on our hands. I try to keep my hands conditioned with ointments and creams. Using a warm wax machine also helps stimulate and warm your hands prior to heading outdoors. By keeping a wax machine handy you also are conditioning your skin a few times each week. I play tennis and temperatures under 55 cause havoc with my Raynauds and severe dry skin issues. I also wear golf gloves on cool days to help maintain some heat in my fingers and palms.
  19. Amy thank you for putting in a request for a donation for Scleroderma. International Scleroderma Network is a non-profit organization and would gladly except any donations towards finding a cure for Scleroderma. Your company's contribution would be an awesome gift. Hopefully, they will keep us in mind when they plan to make a donation. Keep us informed on your sister's well being and keep an eye out for yourself. It was great hearing some good news.
  20. Hello and welcome to International Scleroderma Organization forums Morgan. Many of us on the forum go to a rheumatologist whom specializes in Scleroderma or other autoimmune diseases. A couple of the tests that I was first given were a PFT (pulmonary function test). Checking your airways and lung capacities looking for interstitial lung disease or other breathing conditions. Another test might be an EKG looking for any heart irregularities. If you have acid reflux you may have an endoscopy done to get a base line study of how your esophagus looks today and what changes are occurring over the next several years. If you are having any bowel issues a colonoscopy is also preformed. If you have Raynaud's then some doctors check the capillaries in your fingernail beds to see the pattern or disruptions and can prescribe medicine to help with poor circulation or the Raynaud's attacks. I hope this little bit of information helps you out. Ask your questions and we will do our best to direct you to the proper information or tell you how something has affected us. You have come to the right place to seek support.
  21. Sheryl

    Gentle Exercise

    AmandaThe clickable tongue looks to me like something we use to do as kids. The nah- nah- nah, nah- nah na. We use to say when we were kids sticking our tongues out as we passed by someone we just beat or got away from. That's what I think when I see it. CaroleI usually do Pilates. A couple stations here in the states have programs early each morning. For us early risers from 6 to 7. Any slow exercise program is good. Putting a scarf or piece of cloth in each hand or pretending you have a cloth in each hand and swaying and moving each arm together or seperately getting a flowing type movement really works. Swirling or making circles. Once you get use to doing that then you can get your body into flowing and moving and lightly swaying or dipping forward. Also, you can get your feet moving to some soft music while moving your arms. This builds up core muscles and you get strength throughout your body without realizing it, or working very hard. Then you can get into other strengthening type programs. We just have to work slower than others. Geting yourself moving is the key. Once we can move without too much pain then we can go for longer peroids. Then it would be a good time to join in with others, once you have some stamina to work with. That is my two cents worth of information for today. Getting up and working through pain is sometimes hard but it becomes easier and easier as the days go by. Best of luck to those that are capable of giving it a try. Of course with your doctors permission if neccessary.
  22. Sheryl

    What's the significance of your screen name?

    Mrs. Optimistic it sure sounds like your man had the 7 year itch. He was the one that was not really wanting the intimacy. He wasn't the type that can weather a storm. Or even flow with the tides. I hope you find someone down the road who deserves you. Always be optimistic, it's better to always have a cup that is still half full.
  23. Sheryl

    Stem cell transplant

    Birdman and our birdman's wife. Please keep us informed on the procedures and how things are planned out. Anything to let us know what is going on with the stem cell replacement. I wish you the best birdman.
  24. Sheryl

    ECG Alarm !

    Great news Carole. I hope your PFT is a breeze for you. Keep us informed.
  25. Mortisha, I would like to welcome you to our forum. You can learn so much here. There are many creams that may help with the itching, though I haven't found one that is exceptional. There are several medications that can help with the itching. Some make a person very sleepy. Depending on how severe and prolonged this itch is, the doctor will prescribe what he thinks might work for your daughter while you are visiting him on Monday. The cream prescribed to me is called Lac Hydrin Cream. There is a generic for it also. Sometimes the itch can be totally uncontrollable and non stop for days and days. Take a look around the forum and familiarize yourself with the medical areas. I am off to get ready for a wedding that my daughter in law and two grand children are in this morning. Welcome aboard, I am sure you will have many responses to your questions by the time I check back in later tonight.