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Everything posted by Sheryl

  1. Sheryl

    Update on sclero-soldier

    Emmi, it was so nice of you to come in and let us know what has been going on in your life. We have followed you from HS graduation into traveling around the country to now the service of your country. You have accomplished so much in such a short time. Please come back more often and keep us informed on how you are and what you are allowed to tells us regarding your service experience. Very good to know that you are alive and well.
  2. Sheryl

    Dry Nose, Causing Nose Bleeds

    Jeannie another thing that did help me in the colder months was to have a small portable heater near my bed. It would keep the air in the room warmer than the rest of the house in the winter months. I would turn it on about an hour before bedtime. Having the warmer air in the room my face and nose didn't stay chilled or cold. Using the C-pap was less chilling to the face. Three hours of extra amounts of air flowing through and around your body via your lungs, and giving a better supply of oxygen for better brain function is better than zero hours. Plus, you feel a bit more energy when waking up. At least I always did. I was thinking about buying a nose warmer at one time as the excess air coming out always blew on me and made my nose cold. My husband was the biggest complainer of the excess air or our exhaled air blowing on him. He would have to always sleep turned away from me. Well, his snoring was softer anyways so it didn't bother me.
  3. Sheryl

    Dry Nose, Causing Nose Bleeds

    Jeannie, I used very, very warm water in my C-pap machine. I had an extra water container and when I would get up in the middle of the night I would add real warm water to that and make a quick switch. The warmer seemed to keep the water at the same temperature as the water that I had put into the container. If I have to go back on it again I would continue with adding the very warm water. It worked great for me.
  4. Sheryl

    17 years with linear morphea

    Welcome aboard Viviana, to our get away place. Sorry to hear that you are having a problems once again. I hope starting the Methotrexate will help stop any progression of the Morphea. There is always hope. Hope for a better hour, day, week, etc. Hope gives us something to look forward to. Please tell us more about yourself and what has been done in the past for your skin condition.
  5. Sheryl

    Losing Weight, results :)

    Susieq that is awesome. I have been working at that myself. I have been serious about it for a couple months. I still haven't lost any weight. I have been doing many things to figure out a possible solution but nothing is working at the moment. Maybe I still am eating far too few calories daily. I am between 800 and 1200 calories daily and that is hard to maintain for me. Being diabetic on top of having very high triglycerides and high total cholesterol makes it hard to find things I can eat. That is not counting the acid reflux and watching the yeast and dairy products I consume. Sometimes it is quite hard to figure out what to do with out starving.
  6. Judyt. What were the results of your doppler? What is the plan of attack that has been decided for your recovery of these ulcers? Please tell us when you are up to it.
  7. Sheryl

    New Support Specialist Jo Frowde (Joelf)

    Thanks for joining our team of wonderful workers. Now some of us can go on our well deserved vacations, and stay away a bit longer than planned. We have new coverage here helping us out. Whoo hoo! Welcome aboard to our click free group. Opps! We do a bunch of clicking. Then, a hearty welcome is sent your way.
  8. Sheryl

    News about transplant

    SusieQ, it is wonderful that you husband is willing to go through this challenge of losing weight with you. I feel so bad that your doctor was so forceful in her dealings with you. I guess sometimes they feel that for our own health and well being we have to be shaken up a bit to listen. If we aren't willing to help ourselves how do we expect them to help us. It takes work and energy and more work and a will power to shove aside all our favorite snacks. I'm willing to work at losing 30 to 40 pounds. It will be hard with my favorite season on us but I had already decided to cut back severely and after the New Year to really kick my plans in gear. I am diabetic so it makes it even a bit harder for me to lose weight but I don't plan on having that as my way out. I just found out my Cholesterol is really high once again, along with all the Triglycerides. I get the diabetes under control the rest of me goes wacky. Life can be a constant battle but hey it's life. I want to live it for a very long time if possible. I'll do what it takes no matter how long it takes. Just as long as I am here on this wonderful planet. My box of chocolates my husband is finishing off then he too will learn to eat smaller portions and better food choices also. Jeannie, I guess we will have to give out bunches of Broccoli or bouquets of Cauliflower, instead of Chocolates. Okay! I am ready.
  9. Sheryl

    Scleroderma Australia

    Robyn Sims, what a great thing to do for your daughter and all others with auto immune problems. Welcome to ISN and also to having your own forum to run. You are doing a great service for so many people and their families. It will be fun getting to know more about you and your daughter and Australia.
  10. Sheryl

    Adopting with Scleroderma diagnosis

    Heather, congratulations on the new adventure you are undertaking. You are giving a great gift to some very lucky little boy. Your son will have a little brother to enjoy and grow up with. My daughter - in - law was adopted. My brother adopted 4 beautiful little girls. Each of a different ethnicity. They all love each other so much. Their, 3 natural children were all boys so they now have a large loving family. Cheers to all parents of adopted children. You are the best.
  11. dejavu. I know it's hard to sit back and wait. The doctors tend to do that with us. Watching and waiting can help prevent a wrong diagnosis or it can prevent them from giving you a drug that may be to powerful for you at the moment but may be needed in the future. It might not work in the future as well if you have already been exposed to its properties too soon. I have been asking for plaquenil myself for a couple years. Once I almost left with a prescription. Then my doctor said wait 6 months until your next appointment see if you really need to start another medication. Six months went by and I was going to ask again, but in the meantime I was started on cholesterol medication, and osteo medication so I guess I am happy I am still not taking the plaquenil. I just get by with other anti-inflammatory medications that are prescribed to me. It does seem strange to sit back and know you are ill and not taking something for it. Time will tell what you will need, and when you will really need it. I thought everything that was removed from a persons body went under some type of dissecting process at the time of surgery and also sent to outside laboratories. Maybe that only happens with suspected cancerous products within us. I really don't know but, you would have thought there would have been some type of pathology report. Sorry to hear things weren't taken care of properly. That does happen to all of us at one time or another.
  12. Sheryl

    Limited Scleroderma with mainly GI symptoms

    rlwilliams16, After running tests for Celiac's disorder what was the outcome? Do you have Celiac's or just bacterial overgrowth and major issues involving your gastro-intestional tract.? If you have questions about Incontinence or any bowel questions ask away. For many of us that was/is one of the major symptoms we deal with. On this board we discuss everything from top to bottom, inside and out. We help each other, then we know how to approach things with our physicians without feeling quite so embarrassed. twinkles and rlwilliams16 welcome to ISN. We are family. We laugh and cry together and share our triumphs and pitfalls together. We hope you feel right at home with everyone here. When we have a bad day others help give morale, to lift our spirits up again. Welcome to our family.
  13. Lynda, I received my box of chocolates. Thank You. I was first told by my doctor that if I had Scleroderma I had better get my life in order. I had about 5 years left but I am still here, issues have totally slowed down and I hope to be here another 20 or more. Some doctors seem to scare the living daylights out of us for some reason. They also, don't always know much about this disease only possibly worst cases they read about in medical journals. You may carry the marker in your blood and nothing may ever happen. Some times something triggers it to start its attack on you. Limited Crest starts slowly and takes it time progressing. Diffuse is fast and aggressive and isn't as controllable, right off the bat. Do your reading, asking questions and relax if you can. This wasn't a terminal sentence of, you have only 3 months to live. You may have a lifetime. So go out and enjoy it. Some of the tests that are baseline tests are your PFT's, Echo Cardiograms, Endoscopy's if you are having troubles swallowing, or have acid reflux. Colonoscopy if needed or you are having bowel issues. If you don't have any issues then most likely you won't need any tests right away. Doctors usually don't try to treat something that may not ever develop, they just try to help us with each situation that develops along the way. I hope you are starting to relax and understand that you will get through this and you will cope and wonder yourself how you let yourself get so out of control about this. We have all been there to some extreme. Some of us deal with it right away and get on with living others can't get out of the funk as readily. In due time we all figure out how to get on with loving and laughing and getting the most out of this life. I still have over a half a box of my chocolates. Half full, not almost empty. It is how you choose to think. The best to you and others that are dealing with your new diagnosis'.
  14. Jeannie, that private bet you have with yourself hum! You could win the box of chocolates and get to eat them and we wouldn't know if you were on the money or not. If you don't tells us so we also know about this private bet, then just go buy that box of chocolates now and enjoy them. Ha! Lynda, welcome aboard. Hopefully, it will be a long time before any more symptoms show up. I was told by one of my doctors when he was preparing to do an Endoscopy and Colonoscopy on me. That he thought I might have Scleroderma and he would want to see me in his office the following week to discuss it and my other test results. He kept pinching my skin and feeling my hands and fingers. I just wanted him to get on with his job and leave the rest of me alone. Ha! Anyways! It only took about 8 months for other symptoms to start developing. I had plenty of time to learn so much and arm myself with information. This is for all the people still smoking. If you still smoke quit. By doing so you might possibly go into a form of remission. It worked for me, it can work for you.
  15. Sheryl

    Digital Sympathectomy

    Purr, you would have thought the doctor's office would have known that information when you made your original appointment. Well, at least it is only a 3 week wait. Some people have to wait 6 months or longer to get in to see new doctors. Sometimes having our illness(s) we seem to get in to new doctors pretty quick. I know you will keep us up to date on what you decide. Maybe this new doctor will put all your fears or nervousness to rest. I'll be keeping you in my thoughts.
  16. Sheryl

    Sleep Apnea and CPAP

    Hey friends, looks like you are finally joining the C-Pap group. I went from the Bi-Pap to the C-Pap to N O Pap machine. I have successfully graduated and hopefully won't have to go back on it for awhile, if ever. Everything in my test results now are pretty good. So long, fare well, I hope I never see it, a g a I n.
  17. Sheryl

    New to Forum

    ktvtfan, welcome to our clan of wonderful autoimmune, fatigue related people. Please keep us informed on your well being and what your Scleroderma specialist has to tell you on the 18th of this month. Take the time now while you are just recovering from your hospital visit to get a folder and keep all your medical records together. When you see several different specialists they sometimes like to know what the other one is doing for you. They also like to have copies of results and types of medication that you take or may be wanting to take in the future. Some of my doctors haven't always concurred with my other doctors in the past, so keeping copies of everything for your self helps you to stay on top of things. If you have questions fire away. One of us or many of us will give you our 50 cents worth, to take or leave if desired.
  18. dejavu, there are many creams, lotions, and ointments on the market today that are better than ever for itching. There are even a few new ones out for severe itching. Also, there are prescribed lotions and ointments that your doctor can get you started on if others aren't working for you. If you are just suffering from dry skin that doesn't itch then regular creams will help. I myself keep a bottle of baby oil in my shower stall. When I have completed my shower I coat my legs thoroughly with the oil. Try not to get it all over the shower/tub floor or you will go slip sliding away. After coating my legs as I am drying off I just blot my legs of the water residue. Try this if you wish and see if it helps you out. What works for one person doesn't work for another but it doesn't cost much to try. Good luck.
  19. Michele, You finally were able to get on the forums and post. That is awesome. Welcome aboard our/your wonderful site. Yes you can have a negative results on your tests and still have a diagnosis of Crest.
  20. Sheryl

    Hair loss, help!

    Patty I also, always make a list. In fact every time I think of things even weeks before an appointment I write it down in case I might want to discuss it with my doctor or his nursing staff. I rewrite the list the night before my appointment and go by importance in case we don't get to everything. I take my list into the room with ink pen in hand. I check them off as I go along. My doctor noticed a couple days ago that I skipped a couple items and didn't have check marks by them. He teasingly grabbed my paper work and answered all left over questions. I make sure I am up to date on all shots and that they are in my chart and I have my copies of them. I just had the new combination tetanus / whooping cough shot. Since Whooping cough has now made its way back into the United States I thought I would ask about it and my doctor wanted me up to date on tetanus anyways so that one is done. I was going to have to wait until the age of 62 to get the shingles vaccine under insurance coverage. Otherwise it would have been very expensive. Now as of January 2011 many insurance companies will be covering a great portion of this vaccine's price, making it more affordable. Shingles isn't much fun to bear for a healthy person, so those of us with so many autoimmune issues it can really cause havoc for us. I was elated to get this information from my benefits representative this past week. It will cost insurance companies a lot less in the long run. There are many people here on this forum that have already had shingles. I know of about 20 friends and family members that have had this in the past two years. Now, I can stop worrying and finally get the injection in a couple months time. Who hoo! Everyone, keep up to date records of your medical visits.
  21. Sheryl

    Cardiac Catheterization Test

    Kris, welcome to ISN forums. Your forum for as long as you wish to be a part of all it can provide for you. Please let us know how your (RHC) goes. Everyone experiences things differently. While it is fresh in your mind tell us what you remember and if your doctor's did indeed explain things to your liking. I am looking forward to learning more about your life with Scleroderma. Thank you for joining in.
  22. Sharon T, I'm glad to hear that this drug is helping you with your breathing issues. Any thing that helps us to breath easier with less effort is a good thing. I sure hope this drug continues to work for you.
  23. Sheryl

    CT Myelogram test

    Buttons, glad to hear you have completed all tests and are ready to step forward and have the surgery. Please keep all of us informed on your well being during your entire recovery time. Looking forward to hear that all your tingling and balance problems are gone.
  24. Sheryl

    Celebrating for Different Reasons

    Miocean, Have fun where ever your travels take you. Sounds like you are taking everything into consideration. I've never been to Cabo. Anything special there that is a must see? My son is going in February I believe. May the winds be at your back.
  25. Sheryl

    Celebrating for Different Reasons

    Miocean, at least you have a way out of your tickets if you so choose. Your doctor's don't want you to go and you would automatically get a full refund. Now, Hawaii was mentioned. Why not Hawaii? Everyone speaks English and or Hawaiian, and it is safe. I went on two vacations of great distance in the past two years. Both vacations were awesome. One to Mexico and one to Costa Rica and the Panama canal. I ended up sick from both trips. Buying food in Mexico from a street vendor got me a bit of stomach upset. Buying a refreshment made with their water I would guess also made me ill. My trip to Costa Rica I picked up a bug and was on medication for over three months trying to recover. So, I think some places are best left to the peoples whom thrive the best there or for people with great immune systems. I for one am no longer traveling places that you have to worry about what you eat or drink. Or about parasites or other insects that can cause our bodies great bodily harm. I hope you enjoy your trip if you go. I will wrap you in a hug and hope it keeps you safe. Let all of us know of your decisions and how you fare a month or so after your trip. Sometimes parasites take that long to attack and weaken our systems. After what you have been through you deserve to get on with your life.