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marsha, November 4, 2013
Posted November 12, 2013
Thank you Amanda !!
Posted November 13, 2013
People just love to give advice, as much as we want or don't want it! First, let me say that people, even doctors, are always telling me to do or don't do something that because I have scleroderma or the kidney transplant doesn't work for me. :emoticon-dont-know:
To your topic, Marsha: All of this has come about due to testing for a lung transplant but I have found out my esophagus is not working, that I have reflux, it is dilated, that after fasting for 12 hours it is still half full, that I have a huge hiatal hernia, and the latest is that I have SIBO (small intestine bacteria overgrowth.)
I followed a total elimination diet (no gluten,no dairy, no soy, etc.) from June until September with no relief of symptoms, actually an increase. I was eating very healthy, whole foods but still having up to 20 bowel movements a day. After 21 days when I introduced a food I really didn't notice a difference. I wrote down everything I ate and my symptoms until I got tired of tracking how many times I had been to the bathroom. I've been eating gluten, but not as many salads and fruits as summer has come to an end and strangely I am doing better.
I recently had a Hydrogen Breath Test showing the overgrowth of bacteria in my small intestine. The diet for SIBO is very similar to the elimination diet but eliminates even more things like all the fruits and raw vegetables I was eating from June until Sept. Hmmm. My doctor wants me to take an antibiotic for it but we are on hold right now.
I don't know what the answer is. The gold standard for diagnosing celiac disease is biopsy during endoscopy, which I will be having in the next few weeks. The blood work test is not always accurate. All I know is scleroderma has wreaked havoc with my body.
I'm tired. Tired of all the testing. Tired of all the doctor appointments. Tired of there always being something new that's wrong. Tired of medications. Tired of getting better and getting worse. I'm also happy. Happy I am still here today to write this, happy that I had a kidney transplant and am no longer on dialysis, happy that I can use my hands again, happy that there is oxygen that helps me breathe, happy that I can still do things I love to do, happy for all of you here who support each other so well.
I wish I had the answers. I wish that somebody did. Don't we all?
I totally get your post!! I think we are all tired, and what is worse in my case anyways.. I "LOOK" healthy. so people don't always understand that there is anything wrong with
me. People just don't get it. My closest friend the same one who's Mom has been harping on me, has been seeing a gastro and she said she mentioned my issues to him yesterday and he most times sclero patients have SIBO she should be tested for that. Then you have the sclero specialist I saw in Boston who looked at me and said, your scleroderma is going to go away and you will be all better… Then the next one I saw said, No, it doesn't "go away"; you may get some relief no one knows. Its just really really frustrating for all of us suffering with this awful illness.
Warm Hugs and healing vibes,
Posted November 14, 2013
I have probably had Scleroderma longer than the majority here, not everybody, I know but a long time. I reckon it started when I was about 11 and soon I will be 70 :unsure: Is that good - I am not sure but I am happy to still be here and happy that I can still do most things I want to do.
In my experience nothing I have ever tried, and I have tried all sorts of weird and wonderful 'cures', has ever made much difference. I have got used to the way my body works and I am thankful when everything seems to quieten down and I can jog along relatively evenly. Then when things change again I have to adjust to the new arrangements, or sometimes add a new medication. Sometimes add a new diagnosis of another AI disorder. Sometimes I hate the whole business but all in all I am happy to be here. New knowledge and understanding is turning up almost every day it seems and I think we are probably doing a lot better than we would have been 50 years ago.
You say you look well, so do I (most of the time) and for me that is a blessing. I would hate to look in the mirror every morning and see a haggard face looking back. Some people have that to deal with but not you or I. My close friends can read me like a book and seem to know when I am feeling less well than usual, and because I am having a good run at the moment, they love to tell me that I look 'so much better with some weight on'. Personally I wonder if it is just envy because they would love to be as skinny as me sometimes.
On the bright side too, my Raynaud's suddenly disappeared a year or two ago. No reason, no announcement just poof and it is gone. Bliss!!! Maybe you will be so lucky too one day.
So count your blessings and try to ignore well meaning 'advice'. Be gracious and thankful that you have friends who care enough to want to help.
ISN Support Specialist
International Scleroderma Network (ISN)
Posted November 15, 2013
I look great, too! I look better than I have in years. Since I am not the depressive soul I was on dialysis I dress better, and after not wearing makeup for years because I can't see without my glasses and my hands could't hold the brushes I have discovered eye makeup sticks I can get on. Since I have recently lost weight my clothes fit better. I have long, beautiful fingernails, as for some reason my nails have become harder. I can take showers now and wash my hair whenever I want, which I couldn't for years due to a catheter in my chest so it looks great! I look better than a lot of people my age. Little would you know the entire inside of my body is slowly being destroyed.
The thing about the SIBO, if you have it, what do you do? I have heard the round of antibiotics sometimes don't help. My doctor told me it make not make any difference with the diarrhea. So you can add another thing to the list of diagnosis but can it be fixed? I'll let you know what I find out in a couple of weeks.
How is Katahdin, Marsha? Does it have snow on top? I love that mountain...
Yes there are many, many bad, bad things about this disease and there isn't a whole lot we can do about it, we have no control about what may/not come next.
What we can control, or rather have control over, is our attitude towards this disease. Sometimes we need help doing this and if we do it's in our own best interest to get it, I certainly have had help in the past and would not hesitate to avail myself of it again in the future should I need it.
Keeping up appearances is important to most people with scleroderma because most people with scleroderma are what? Women! We all know that a good appearance can bring with it that phrase about how well we look when we in fact feel awful and probably took so long to attending to our appearance that we began the process the day before!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted November 17, 2013
While I don't have a diagnosis of scleroderma, I do have Hashimoto's Thyroiditis and I am on a gluten-free diet due to the connections between ingesting gluten and autoimmune attacks on thyroid. I test negative for celiac on biopsy and also blood work but I do find a lot of my bowel problems are gone when I adhere to a gluten-free diet. I highly suspect that many of the autoimmune diseases have roots in our diets - all the chemicals we ingest daily can't be good for us.
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