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This is a pretty emotional excerpt from a book written by Jon Reiner, a James Beard-winning food writer. He had some serious complications from Crohns and was unable to eat anything by mouth. I think it kind of describes the desperation we've felt at times. Interestingly it ends with him savoring some wheat toast.
This is a tough read, because I can so identify with the author's feelings. I'm very thankful NOT to be on NPO - at least there are some things we can still eat, right?
How sad that his doctor didn't know enough to help him figure out a better diet that might give him a chance at real healing. Once again I'm thankful for this forum. :-)
Besides crying my way through it and read it fully - word for word - I now feel so blessed regardless how limited my diet is. Brings to mind a saying my mother preached to us as kids - "There but for the grace of God go I."
I refuse to complain again.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
That is a story that requires a box of kleenex. Though there is no comparison but I can relate to the obsession with food and the feelings of isolation. It took me almost two years to accept the change in diet required by MC. It is hard on marriage and family and isn't something that entirely goes away.
Hmm... I wonder how many people have marriage issues because of a chronic illness like this? My husband is frustrated by how much it costs to feed me (us--the two children still at home are GF, and one is DF too). But otherwise he's sympathetic. He even got out the shower the other day because he thought I was knocking on the door and needed the bathroom.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
It's been two years since I told my husband to bear with me for just two weeks while I did the elimination diet. After that, I told him, I would be healing and we'd be able to eat meals together again. He's still waiting, but I think he's given up, as have I. So he now makes almost all of his own meals and I make all of my own, of course. I think that's why he would like to go out to dinner more often - we can share in eating a good meal. But restaurants are a land mine for me, as much as he loves it.
We've been married long enough that we'll endure this change, but I wonder about shaky marriages. When I first joined the board, a single woman said that her live-in boyfriend up and left her once she got MC. I think our spouses and families have to go through a big adjustment, just like we do.
Gloria
You never know what you can do until you have to do it.
So true Gloria. I am so lucky to be married 25 years to my exceptional husband. It took him a few weeks to realize that this is going to be forever. I try very hard to cook us dinners that are good for me and palatable for him. I give him bread to balance his meals He's great about it now. His attitude is that this is what life has thrown us and we will make the best of it. Now, we back pack food and go to everything we normally would. Even though my food is more expensive, it's still less than eating in restaurants!
This man writes well. He had some serious intestinal issues and my heart went out to him. I too have licked food or chewed it and spit it out just for the taste of it. I never realized that taste buds would atrophy from lack of use.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
On weekends my son and I would go for breakfast. We still do, though he eats, I watch, sipping hot water with lemon. He and I have sort of made peace with it, but other people haven't. I have friends who go to theater or a movie in the afternoon, and then go "for a bite". They know I can't do it, even if energy permitted. And they are angry. I am not anymore. I was for a long time.
It was very humbling to think about the magnitude of his struggles. Maybe having limited food options isn't so bad after all!
I was so intrigued by his story I searched around on the internet and found a brief interview he did which tells a bit more about his current status. Here's the link:
During the episode of acute illness that sparked me to write The Man Who Couldn’t Eat, one of my very wise doctors said to me, “Living with chronic illness means living with uncertainty. That’s your lot. You can either accept it and move forward or let it imprison you.” He was right, and I do find that the hardest part of living with illness has been accepting the inevitability of uncertainty. Nothing is more frustrating than doing everything right for your health, yet still winding up sick. So, I confess, my level of acceptance has not evolved to its fullest. I seem to inhabit two worlds psychologically: When the illness is active, there’s no escaping the presence and constant managing of symptoms. When the illness is quiet, I put as much distance between it and my mind as I can. That’s a form of functional denial that I don’t think is terribly wrong. No one wants his life to be consumed or dictated by illness and the limitations that it imposes.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
