Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About susie54

  • Rank
    Silver Member

Recent Profile Visitors

1,176 profile views
  1. Hi Everyone, I have not posted for over a year. I had a grandbaby, so many family happenings this year that I struggled to survive all of them. I read occassionally to keep up with everyone. There was a person a couple of years ago on this board and I think her name was Susie. She had been to St. Lucia and had pictures of her room at the resort. I was trying to find the resort name as my daughter wants to go to St. Lucia. Susie, I think it was you. But if not, maybe someone could remember. Susie54
  2. Hi, I have gasteoparises a few times a year with flareups. I up my motility medication when that happens. I usually lose weight but quickly gain when appetite comes back. I am so glad mine comes only once in awhile. It is not fun to deal with. Sorry you are dealing with it now. Sometimes I would feel if I jumped up and down maybe the food would go down a little. I JUST CAN"T JUMP!! HA! Ha! Susie54
  3. Hi Summer, Sorry you are having all these issues. It sounds as though you are in a vicious cycle and need help to pull out. I would talk to a nutritionist and the gastroenterologist about all of of this. You need some kind of regularity. I think mild exercise would be a good start in helping your overall health. You are dealing with alot of issues. I hope you can get the help you need. I always find fresh produce and fruit are always better with me. Anytime I eat alot of chocolate or fatty food my bacterial overgrowth and malasorption act up. I am not perfect by any means but try overa
  4. Thanks for sharing Michele, I just getting caught up here. Your advice will be well taken. I try to eat alot of fiber and fresh produce. It does help. I hope you are doing well otherwise. Thanks for all the good info. Susie54
  5. Hi Summer, This is what has worked for me. I have taken a motility drug for five years now, two on normal days and four on bad days. I have given up pastas, cereals, high fat foods and stick with fresh foods for the most part. I"M NOT PERFECT by any means. Cereals and pastas and even too much bread just give me problems now and any processed foods or high fat foods give me a lot of motility problems. When I have bad days for flare ups, I decrease my fiber intake a lot, some days down to liquid only and very small amounts of food. I don't even like to drink a lot of water on those days.Th
  6. Thank you so much Michele, I have often thought my upper right quadrant pain was more than what they could figure out. I too had my gallbladder out 15years or so ago. This pain started with my MCTD and last year when I really had some problems my gastro thought he could figure it out but things calmed down. It must be something odd like yours and I will tell him about it when my quadrant pain becomes a problem again. I hope yours in straightened out and you are relieved. Sclero can do peculiar things that even doctors don't understand. As my gastro put it tricky but treatable.. Good lu
  7. So glad you worked out your problems over the year. Susie54
  8. Hi, I have mild sleep apnea diagnosed this year. Funny, it seems worse when I am in a flare up. Anyway, I have the nose hole one, the small one that just goes in the nose. I take it off in my sleep all the time. The main problem I have is the mister on it causes my nose to get cold and it wakes me up. I wake up, then put it back on , then wake up, put it back on. I never seem to get it right. I am still trying. I do sleep better when all of it goes right. Hope you can work yours out. Susie54
  9. Oh, I know that one. You get a surge of energy and the world is yours to tackle. Then comes the next day!!Ugh!! Hope you feel better. Susie54
  10. This is a great thread. I agree with so many of everyone's ideas already. I have had MCTD for 10 years now and the things that keep me going are: 1)EXERCISE- Water year round indoor pool. Varied exercise of all types with A LOT of stretching. Even on bad days, this will make me better. REALLY bad days, just can't do anything . 2) HEAT- rice pads, heat massage, hot tub, all good for pain 3) DISTRACTION- anything that keeps you engrossed, even a grandchild to painting to gardening. 4) FRIENDS-laughter Susie54
  11. Cheryle, I am so very sorry. I had that scare last year. My thyroid multiple cysts and nodules kept growing and finally at 4cm, the doctor worried about slight risk of cancer and too big. I did not have symptoms. I had it out and it was clear of cancer but he said it is one of the easiest cancer to cure because if it so slow growing. I hope yours will be cleared up soon and this all behind you. I know it is always scary when you hear that word cancer. Susie54
  12. Want to hear a wild one. I tested on the medium positive for the antiphospholid antibody IGA. I asked the doctor if that had any meaning and he said, I don't know. Don't think so but take an aspirin a day to be safe. Susie54
  13. Hi, Sorry to hear of your stomach problems. Are your shoulders and neck hurting because of the regurgitation? Susie54
  14. Hi , I am from Texas and there is a case 40 miles from where I live. All you can do is wash your hands as much as you can. They are advising no trips to Mexico but other than that there is not much you should worry about. I would certainly go on any trips in the United States as of right now. You could ask your doctor if there is great concern about it. I would go but wash my hands very well after the flight and while visiting the nursing home.
  15. Hi, This has been interesting to read. My index and third finger have changed over the years. I don't have skin thickening but index and third fingers on right hand are shorter and bend over. On left hand my index is longer and straighter and skinnier with flat nail and third finger is bent with latest ulcer healing on it. I have noticed the nails are shorter, wider and square and in two fingernails I have an indentation on one and beau's lines on the third. Sausage fingers on index and third. I do find myself not using my hands any more to demonstrate stories. My husband does wonder if
  • Create New...