Yes, adversity makes us stronger. I believe having painful spasms, involuntary body movements or just plain ole Dystonia has made me appreciate life. When I see somebody with tremors of the head, neck, or hands, I have to help them. That is my mission. Many people get misdiagnosed with Dystonia. When I lived in Pennsylvania, everybody had Dystonia -Amish, Germans and others. It seems to be common in the Swiss Germans and I am part Swiss German. It runs on Mom's side.
Microscopic Colitis is a totally different animal. Mind/Body is something I knew about but forgot. Your gut really controls everything. I don't want pity, I don't want anybody to feel sorry for me, I don't want to feel down, but sometimes you can't help but have a pity party. Dorothy and Toto. I sound like Dorothy in the "Wizard of Oz." You see I can laugh and act silly with this wacko disease.
I have two jobs now. I want to help everybody suffering from Dystonia and now I want to help everybody suffering from Microscopic Colitis. I never felt embarrassed from either disease. Nothing on life is perfect and many people have suffered more than us. I want to maintain my bond with God and Jesus, his son. If we pray, I think God will help us...on his timeline.
TIME HEALS ALL WOUNDS Dorothy Olson Williams
I have decided in my best interest to let Dr. Fine go
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I had to let go of helping everyone else. I am a retired RN and became selfish and concentrate on myself now. You can't do both and keep up your healing. I hope you take everyone advice and get going on your own healing. Become a little selfish oh heck a lot selfish!!!
Go Dorothy Go!! Fight Fight Fight the good fight.
Go Dorothy Go!! Fight Fight Fight the good fight.
Janie
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dolson
- Gentoo Penguin
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- Location: Hilton Head, SC
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Janie, that's what everybody is telling me not to do. Think positive and no pity, because I'm the type who fights. That's all I know how to do is FIGHT! But fighting or crying gives me diarrhea. If I get mad at somebody; my body takes it out on me. Being calm, cool, and collected has never been easy, but I have to learn how to do it, or TOTO and I will be together forever.
When I was working as a RN, I helped people outside the hospital. Even working the grueling 12-hour shifts made me still want to help Dystonia sufferers. I'm not working now since I was sexually assaulted by a doctor in the nurses station at the hospital. Then the extreme retaliation by the hospital and CEO nearly destroyed me. I was going to jump off a bridge and end it all. It was hell on Earth. They nearly destroyed my life, was blackballed, career gone and diagnosed with PTSD, in San Marcos, TX! Therapists in Savannah are scared to help me. I hate nursing. But while I was working, I started my own Spasmodic Torticollis Support Group in Savannah. Helping people helps me. I felt good about myself. I like people and want to give them all the information on Dystonia that's out there. I want to do the same for Microscopic Colitis, but like I've said, I'm confused about MC! I don't understand it, don't know why it has a mind all it's own, and how to cope. Without Tex's books, I'd be totally in the dark. I know it's a dreaded Auto-Immune disorder. Oh how I hate AI diseases. But there is still so much we don't know, so how do I help people when I go out? I love people, I love talking to people and this gives me a chance to break some ice and strike up a conversation.
When I was working as a RN, I helped people outside the hospital. Even working the grueling 12-hour shifts made me still want to help Dystonia sufferers. I'm not working now since I was sexually assaulted by a doctor in the nurses station at the hospital. Then the extreme retaliation by the hospital and CEO nearly destroyed me. I was going to jump off a bridge and end it all. It was hell on Earth. They nearly destroyed my life, was blackballed, career gone and diagnosed with PTSD, in San Marcos, TX! Therapists in Savannah are scared to help me. I hate nursing. But while I was working, I started my own Spasmodic Torticollis Support Group in Savannah. Helping people helps me. I felt good about myself. I like people and want to give them all the information on Dystonia that's out there. I want to do the same for Microscopic Colitis, but like I've said, I'm confused about MC! I don't understand it, don't know why it has a mind all it's own, and how to cope. Without Tex's books, I'd be totally in the dark. I know it's a dreaded Auto-Immune disorder. Oh how I hate AI diseases. But there is still so much we don't know, so how do I help people when I go out? I love people, I love talking to people and this gives me a chance to break some ice and strike up a conversation.
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Gabes-Apg
- Emperor Penguin
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Dorothy
the best thing you can do for others right now, is put yourself first - guilt free.
it is not selfish to nurture and care for ourselves when our bodies need it.
the thing with AI issues like MC, is that we never get to fully understand it. part of the healing journey is learning to accept it, embrace it, love it, rather than trying to understand it or 'control' it.
how do you help people when you go out? by being you, whether that be vulnerable you because you are having a shi**y day (pun intended) or by being brave you because you are leaving the house despite the challenges, or you find slightly different ways to connect to people that doesnt involve you helping them.
part of the gift of life with MC is the transformation - right now you are the caterpillar in the cocoon. going through transformation.
the other way i look at life with MC is that it is bit like Alice in Wonderland, we go down a rabbit hole where everybody, everything is completely different!! 'bonkers' and then we realise that wonderland is the place to be ! (please note I am not saying that Tex is the mad hatter! - but big pharma is the evil queen)
right now - it is the time to 'let go' let go of what you were, and how life was, how you socialised, how approached social situations involving food etc.
and with open eyes and heart embrace the journey getting to know wonderland,
the best thing you can do for others right now, is put yourself first - guilt free.
it is not selfish to nurture and care for ourselves when our bodies need it.
the thing with AI issues like MC, is that we never get to fully understand it. part of the healing journey is learning to accept it, embrace it, love it, rather than trying to understand it or 'control' it.
how do you help people when you go out? by being you, whether that be vulnerable you because you are having a shi**y day (pun intended) or by being brave you because you are leaving the house despite the challenges, or you find slightly different ways to connect to people that doesnt involve you helping them.
part of the gift of life with MC is the transformation - right now you are the caterpillar in the cocoon. going through transformation.
the other way i look at life with MC is that it is bit like Alice in Wonderland, we go down a rabbit hole where everybody, everything is completely different!! 'bonkers' and then we realise that wonderland is the place to be ! (please note I am not saying that Tex is the mad hatter! - but big pharma is the evil queen)
right now - it is the time to 'let go' let go of what you were, and how life was, how you socialised, how approached social situations involving food etc.
and with open eyes and heart embrace the journey getting to know wonderland,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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dolson
- Gentoo Penguin
- Posts: 310
- Joined: Fri Mar 30, 2018 12:35 pm
- Location: Hilton Head, SC
- Contact:
Thanks Gabes
Gabes, you are inspirational. I have to take care of ME now. I can't get upset or TOTO and I are in for a long ride of misery, diarrhea, and stomach pain. Thanks for helping me and telling me to basically help myself first. How can I help people if I can't help myself?
As much as I dislike MC and who does, I have to take care of me, embrace this disease and not try to learn every aspect concerning it.
Thanks, Gabes. I really like/love you for helping us with this mystery disease. You do so much for MC. Love, Dorothy
As much as I dislike MC and who does, I have to take care of me, embrace this disease and not try to learn every aspect concerning it.
Thanks, Gabes. I really like/love you for helping us with this mystery disease. You do so much for MC. Love, Dorothy
Hi Everyone and especially Tex and Gabes!
Old-timer here! Diagnosed with MC about 18 yrs. ago.
Spent many years managing symptoms with food alone but never achieved really good control until I started cholestyramine (bile binder) several years ago. I would urge a trial for anyone who continues to have problems with MC. Don't forget, MC is a "wastebasket" diagnosis - IOW, there can be many causes - i.e. histamine, foods, medications, and in my case, it was bile acid related. In studies, up to 60% with MC have a bile-acid component. The excess bile acid was constantly irritating my colon mucosa, so I never completely healed until I used the bile acid binder. On the binder I have been able to add in most of the foods (even dairy) thatI had avoided for years; however, I will always avoid gluten - I do believe it is toxic to me and many others.
I am also committed to eating as "cleanly" as possible - organic, non-GMO, locally-sourced, grass-fed, etc. I believe this has helped me too.
Good luck!
Polly
Old-timer here! Diagnosed with MC about 18 yrs. ago.
Spent many years managing symptoms with food alone but never achieved really good control until I started cholestyramine (bile binder) several years ago. I would urge a trial for anyone who continues to have problems with MC. Don't forget, MC is a "wastebasket" diagnosis - IOW, there can be many causes - i.e. histamine, foods, medications, and in my case, it was bile acid related. In studies, up to 60% with MC have a bile-acid component. The excess bile acid was constantly irritating my colon mucosa, so I never completely healed until I used the bile acid binder. On the binder I have been able to add in most of the foods (even dairy) thatI had avoided for years; however, I will always avoid gluten - I do believe it is toxic to me and many others.
I am also committed to eating as "cleanly" as possible - organic, non-GMO, locally-sourced, grass-fed, etc. I believe this has helped me too.
Good luck!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Everyone and especially Tex and Gabes!
Old-timer here! Diagnosed with MC about 18 yrs. ago.
Spent many years managing symptoms with food alone but never achieved really good control until I started cholestyramine (bile binder) several years ago. I would urge a trial for anyone who continues to have problems with MC. Don't forget, MC is a "wastebasket" diagnosis - IOW, there can be many causes - i.e. histamine, foods, and in my case, it was bile acid related. In studies, up to 60% with MC have a bile-acid component. The excess bile acid was constantly irritating my colon mucosa, so I never completely healed until I used the bile acid binder. On the binder I have been able to add in most of the foods (even dairy) thatI had avoided for years; however, I will always avoid gluten - I do believe it is toxic to me and many others.
I am also committed to eating as "cleanly" as possible - organic, non-GMO, locally-sourced, grass-fed, etc. I believe this has helped me too.
Good luck!
Polly
Old-timer here! Diagnosed with MC about 18 yrs. ago.
Spent many years managing symptoms with food alone but never achieved really good control until I started cholestyramine (bile binder) several years ago. I would urge a trial for anyone who continues to have problems with MC. Don't forget, MC is a "wastebasket" diagnosis - IOW, there can be many causes - i.e. histamine, foods, and in my case, it was bile acid related. In studies, up to 60% with MC have a bile-acid component. The excess bile acid was constantly irritating my colon mucosa, so I never completely healed until I used the bile acid binder. On the binder I have been able to add in most of the foods (even dairy) thatI had avoided for years; however, I will always avoid gluten - I do believe it is toxic to me and many others.
I am also committed to eating as "cleanly" as possible - organic, non-GMO, locally-sourced, grass-fed, etc. I believe this has helped me too.
Good luck!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Great to see a post by you. Apparently a bile acid sequestrant must have been the final piece of the puzzle for you as it seems to have resolved the remaining issues you had. And it's done so for a long enough time period now to verify that your relief wasn't just a spontaneous accident — the bile acid was surely the problem. I agree, BAM should certainly be considered by anyone who can't get an otherwise complete treatment program to provide complete relief.
Tex
Great to see a post by you. Apparently a bile acid sequestrant must have been the final piece of the puzzle for you as it seems to have resolved the remaining issues you had. And it's done so for a long enough time period now to verify that your relief wasn't just a spontaneous accident — the bile acid was surely the problem. I agree, BAM should certainly be considered by anyone who can't get an otherwise complete treatment program to provide complete relief.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hey Tex, great to "see" you!
Yes! Actually, my GI doc does a trial of cholestyramine before trying budenoside and has found that in many cases she hasn't needed to go to the latter.
Hope all is well with you, my dear friend!
Polly
Yes! Actually, my GI doc does a trial of cholestyramine before trying budenoside and has found that in many cases she hasn't needed to go to the latter.
Hope all is well with you, my dear friend!
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Other than having a stroke almost two years ago that forced me to have to relearn how to do virtually everything, I've been doing surprisingly well for an old codger. And just like MC teaches us how to clean up our diet, it taught me how to slow down, and appreciate the simple things in life.
I trust you're doing well. Are you still investing a lot of time in local politics?
I'm currently writing a novel in my spare time, a story about a main character who has MC.
Tex
I trust you're doing well. Are you still investing a lot of time in local politics?
I'm currently writing a novel in my spare time, a story about a main character who has MC.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
It appears you have relearned it all! Kudos! And it's great you are enjoying those little things.
Still somewhat involved with local politics. Have continued on the Board of our local nature center and...... you will get a kick out of this: was recently appointed to the Board of our Maryland Agricultural Resource Center! How about that??? lol.
Hugs,
Polly
P.S. Let me know where/when I can see your novel. Great idea!!!
Still somewhat involved with local politics. Have continued on the Board of our local nature center and...... you will get a kick out of this: was recently appointed to the Board of our Maryland Agricultural Resource Center! How about that??? lol.
Hugs,
Polly
P.S. Let me know where/when I can see your novel. Great idea!!!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly wrote: you will get a kick out of this: was recently appointed to the Board of our Maryland Agricultural Resource Center! How about that??? lol.
Yep, that is a surprise — you may be well on your way to being appointed the next secretary of agriculture as fast as you're climbing the ladder.
I hope to finish that novel by fall, but I've got a long way to go.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wow, what a great, loving, inspirational thread. The support on here is always amazing and reading through these posts brought tears to my eyes. The caring, love, compassion, patience and understanding from everyone on here is the thing we all need so much but don't always get from doctors, family or friends. And then the icing on the cake: to see a post from Polly - so nice to see you again!
I have no advice to add - all the wonderful thoughts and suggestions have already been shared... I'm just so happy to be a part of such a loving and wonderful group. Of course, I would rather none of us had to get here for the reason we did, but I do believe everything happens for a reason.
Sue
I have no advice to add - all the wonderful thoughts and suggestions have already been shared... I'm just so happy to be a part of such a loving and wonderful group. Of course, I would rather none of us had to get here for the reason we did, but I do believe everything happens for a reason.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
This has been great, reading this post. Definitely an upper!
Polly, I started a bile acid sequestrant about 2+ months ago, a pill, Colestipol, and it has been a big help. My gall bladder was removed years ago, in my twenties. I preferred a pill over having to mix the powder. However, I am still figuring out the best time to take it. Like all bile acid sequestrants, it can interfere with other supplements like vitamin D, for example. It is advised to take it at least an hour after other supplements/medications or four hours before.
Are you taking it in pill form or powder?
How much do you take and when?
Have your labs shown any decrease in vitamin and mineral levels?
Thanks,
Susan
Polly, I started a bile acid sequestrant about 2+ months ago, a pill, Colestipol, and it has been a big help. My gall bladder was removed years ago, in my twenties. I preferred a pill over having to mix the powder. However, I am still figuring out the best time to take it. Like all bile acid sequestrants, it can interfere with other supplements like vitamin D, for example. It is advised to take it at least an hour after other supplements/medications or four hours before.
Are you taking it in pill form or powder?
How much do you take and when?
Have your labs shown any decrease in vitamin and mineral levels?
Thanks,
Susan