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I saw a quote by Katie Couric, who said that "Life is a series of reboots" and I think it applies to our disease too. Seems as if we are always going back to the drawing board and trying again. Fortunately, we are a family of determined, creative, eclectic, and compassionate PP, so we have learned and shared many options for managing MC. And have encouraged and supported each other through those reboots. Here's to us!! Can't imagine where we'd be without this special family.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Recently, I was thinking about my mother's journey dealing with MC beginning so many years ago. Because of this board, I can look back at all of her varied problems and know that they were the result of CC: chronic D, periodic debilitating rashes, ataxia, fatigue, etc. She undoubtedly had celiac as well since I got my genes from her. She chose NOT to follow a GF diet despite advice from Entero Lab. It was difficult just 10-12 years ago to do that and she said she was too old to change her diet so drastically. She consulted many doctors and dieticians trying to control her symptoms. We both discounted and then forgot about the gluten advice as she struggled from then on. It didn't seem possible that food could make her so sick. We live and we learn and then we reboot.
This board has been a lifesaver for me and I bless every one of you for all of your contributions, especially Tex. Without his guidance, dedication and knowledge we wouldn't be the well informed Potty People we are now.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
This got me thinking. Sometimes a total reboot is necessary, things like drastic dietary change, and sometimes it is more like a delicate balancing act, subtract a little this, add a little that. It helps me to think of disease as a bodily process rather than a thing you either have or don't have.
Sheila, my mother, like your mother, told me that she was too old to change the way she ate. She said it so emphatically to me that I never mentioned it to her again. She was in her mid 80's then and diagnosed with "ibs". Her symptoms weren't as drastic as your mother's, but still it affected her life negatively and she sought medical advice numerous times and got nothing helpful.
I too am grateful to this board, to all the members and especially to Tex, who keeps it going with his knowledge, dedication and kindness.
Your comments about your moms remind me of our website founder, Sally Read. She was truly a pioneer and never had the chance to benefit from all of the accumulated knowledge we have here now. More than 12 years ago she urged me to get Dr. Fine's testing. She had done it and had learned that she was sensitive to gluten. She diligently went GF, but unfortunately, way back then, we did not know yet that it could take months to see results. She tried for a while and then gave up. Also, we had no concept of the multiple associated sensitivities (dairy, soy, eggs, etc.) MCers experience. The paleo diet was unknown here. Entocort was not yet available, so Sally was on long-term high doses of prednisone, which led to many undesired complications. Her MC continued and she went on to take immunosuppressive drugs long-term. Sadly, she died without ever fully controlling her MC. We PP are so lucky to have 12 years of experience available to us now, and I know Sally would agree and be thrilled!
RIP Sally.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
In addition to my undying graditute for evetything I've learned here, I want to add:
What we are doing here is SOO important!! I see little signs of growing food intolerances in my kids, and other people's kids, every day. I wonder if they will end up with MC, or with my knowledge, will I keep them healthier, longer? I hope we are able to figure out ALL the answers for the next generation, since we know more and more people are getting MC.
That thought Polly is so very true. It seems like often when we are doing well that we can tolerate more foods than when things are flaring up and once things have flared up we have to go back to the basics, essentially pushing the reboot button.
I certainly would not know where I would be without all of the incredible knowledge and people on this website....thanks to all.
I think we need to add this T Shirt to the offerings here
The wonderful support I get from this website reboots me daily. Especially when I am going through a particularly bad patch, that's how I snap out of it. I read this website and receive some words of encouragement, then I try to give back some words of encouragement - that's REBOOT! I never blogged or cared to blog before and I thought it was silly but now I see how incredibly valuable it can be when there is a common ground to share about. Wonderful! I'm grateful.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Polly, I'd like to add my thanks for all your great knowledge and help here. Somedays I wish I could just reboot!
What we are doing here is SOO important!! I see little signs of growing food intolerances in my kids, and other people's kids, every day.
It scares me what I'm seeing around me with my kids, grands and nieces and nephews. I'm seeing issues with younger and younger people. Unfortunately they mostly don't want to listen.
Deb
To all my PP's,
I don't know where I would be without your support, knowledge and caring.....thank you so much!
I just got a bumper sticker that says "We are all in this together" and it has the earth beside it. I wanted something more than a political statement and it says it all. That is how the folks are here on this site.....doesn't matter where we come from, how much money we make, you get the picture!
Reboot and Rock on PP's
Diagnosed with Collagenous Colitis after a 2 month bout of Diarrhea. Confirmed after a biopsy during a colonoscopy.
I completely agree with this! I have found something that works a few times, only to have it stop working and go back to the drawing board. This usually makes me extremely frustrated, but now that I'm thinking about it the same way I think about a "reboot" in life, most of the time when you have to start over or change direction you wind up being better than you ever were before, because the first thing wasn't truly the right thing for you. So maybe now, instead of thinking of it as a failure, I'll treat it as a lesson and hope that during my search I'll finally find the thing is the right solution.
I'd also like you thank you all for your support and knowledge, I've belonged to many internet forums and none have been as supporting or understanding as all of you! Especially Polly, you've been my savior through all of this!
I can only DITTO all the comments above. I just wish I had found it earlier than I did but the helpful info is and has been PRICELESS to me as well!!!!! Thanks to everybody
Can't imagine where we'd be without this special family.
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