My cronies
This blog has been my escape from real life - a place where I can hide 75% of my life. Ok, I'll get on with it because I'm tired of hiding.
I've had Crohn's Disease for 26 years.
There. I said it.
I'm not going to go into a description of everything it means, other than mention that it's an autoimmune disease that attacks the intestinal tract and that I've had a dozen surgeries. When I watch all those HNT photos from other bloggers I'm jealous of all those perfect bodies. Mine is scarred and I have nothing to be proud of. If I could take a photo of my brain, that'd be the only one I'd be proud enough to display in public. Ok, 'nuff self pity. There are people far worse off.
I've lived my life in denial and ignored anything to do with sick people. I didn't want to be associated with other sick people. Then four years ago I had gone through a difficult time with my health and started seeking out others who understood my suffering.
I became active in support groups both online and offline. I became a lobbyist and along with other people as passionate as I am spoke to senators, congressmen and legislators in an attempt to get their support for a bill that would provide funding to the NIH for medical research that will find a cure. I attend conferences, meetings, fundraising events, support group meetings, committees and anything related to my life with Crohn's Disease.
I cannot stand people who were diagnosed with an illness and make it their life mission to talk to everyone about their pains, symptoms, surgeries, etc. No one wants to hear that shit! (Literally!)
But the problem is that we have a need to talk. We have to vent to someone. We have to share it with someone. It's just not all that healthy to keep everything inside and let everything eat you from inside.
So at work and on my blog - I don't talk about my disease. But in the evenings, I get online and dedicate two hours to helping others with this disease. Particularly parents of kids with it, since I know what it was like growing up with Crohn's.
I've made a lot of friends through all my disease-related activities. They're my crohnies. One of them has been my personal support group through a very difficult time. Her way of support - she would mail me gag gifts. Yeah, stupid things like -
Things that would make me laugh.This post is dedicated to all these friends I've met in recent years who share my disease and understand what I've been through. All those who make me laugh, and let me cry. All those who don't ask me with that serious tone of voice, "so how are you feeling today?" [Yeah, unless you really want to hear all the gory details of how I feel, then don't ask!]
This post is dedicated to a very special young friend - a very brave young man, that I wish all the best the world has to offer. After years of battling severe Crohn's, he had undergone stem cell transplant and is now finally recovering and on his way to prove the world that there is a cure for this debilitating disease. If anyone is curious to read about the wonders of stem cell transplant, the process, and the results, you can visit his wonderful website.
This post is dedicated to all the parents of kids with Inflammatory Bowel Disease, whom I've gotten to know in the past four years. Parents of toddlers, and teenagers. Parents who are struggling with decisions that no parent should ever have to make, yet they are forced to make.
This post is dedicated to my friends from my support group, and especially J & D who got married yesterday at a beautiful ceremony. Sometimes those words the priest says mean so much more - "in sickness and in health." This couple has been through it all! Congratulations and may you enjoy many years of joy and happiness.
This post is dedicated to all of my friends who visited me in the hospital, sent cards, sent flowers, walked with me and helped me raise money for the Crohn's and Colitis Foundation of America.
This post is dedicated to many new friends I will meet in future - friends who share my hope of living to see a cure for our disease.
posted at
10/09/2005 07:15:00 PM
4 Comments:
hi
Thanks for your post. I'll have to google some info to enlighten my mind!
Cheers
honeysmack
By
Ms Smack, at 11:31 PM, October 09, 2005
I have heard from, shall we say "sources" that one can play a good game of tic-tac-toe within the scars on your abdomen. How wonderful it must be to need only a grease pencil and a flat spot to lie on to amuse yourself and a friend.
Like you, I have my own pet disease, for which I have walked for the cure, visited Washington,talked to Congressmen and women, written letters to editors, and lobbied. Unlike you, I have no faith in these people at all since my visits were not accompanied by a check in donation to their reelection, which usually means my request was round filed as soon as the door closed behind my back.
Working with the victims of Crohn's is about the best thing you could possibly do, and I congratulate you for doing it. Keep it up, and some day some one may say "Eureka! I found it!"
mtrain
By
Anonymous, at 12:26 AM, October 10, 2005
I had to google to learn what Crohn's Disease is. Ouch. Okay, I will no longer complain about the two times I had intestinal parasites. That's comparitively nothing.
Wishing you best, and hopefully they'll isolate the !@#$%^& virus that causes this and find a way to prevent it in the future. What a pain in the ass.
By
The Zombieslayer, at 1:55 AM, October 12, 2005
RJ and honeysmack, thank you for your kind words.
mtrain, it's not tic-tac-toe, it's a full gameboard of chess, you moron.
And I do have faith in congress because they did pass part of the bill and we're very happy at our success.
madman, my heart goes out to your wife and you for being BOTH inflicted with it. I feel lucky that my husband is healthy enough to take care of me when I'm really sick.
This isn't a disease that people like to hear about, let alone talk about. But I wear my blue "got guts" bracelet in pride and I have no problem answering any stranger that asks me what it's for. I hope more people would. I've given it to my family and they also wear them just to raise awareness.
Keep in mind, I was in the literal closet for 22 years of my life with it. So I'm no angel.
ZS, I don't think I mind it if you talk about parasites. Every person has their own suffering. There's no reason to compare. Now if you started telling me that your bout with parasites must have been worse than my disease, then maybe I'd care. But you're not bound to do that. Only stupid people do these things. And yes, I've met my share of stupid people who reacted to my explanation about the disease by saying, "Diarrhea? Oh yeah, I had that once."
Felt like smacking them right there and then.
By the way, no one knows if it's a virus or something else. There are several beliefs to the causes. The problem is that they cannot find a cure until they find the cause. The beliefs range from bacteria, genetics and environment. Mine is very likely genetic. I've participated in a study for it for the past 10 years.
Thank you all for your encouraging words. And now we will return to regular programming.
By
Mybrid, at 5:28 AM, October 12, 2005
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