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How Long Will Insanity Defense Coverage Apply If I Hurt The Next Bubbly Person That Reminds Me About How Lucky I Am Since It Could Be Worse?


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#1 Jen Z

 
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Posted 23 October 2011 - 04:26 AM

wow. I knew it would happen as soon as I revealed to people my new diagnosis but geez, I am so disappointed by people's need to give advice instead of just offering a sympathetic ear. Advice from people that know the issues at hand is more than welcome but not from people who don't have a clue. Yes, I am aware that there are many gluten-free foods in the market now. I would have to be living under a rock to have not noticed. Yes, recipes can be adjusted but no, some things can not be replicated. How about a 'geez, that sucks I'll do my best to support you in food choices and learn about this disease and just be a good friend?' Yes, I know it will get easier but I want to grieve not gripe for a bit as I adjust. I am sure that a few of you can relate ;)

~ Jenny in mourning
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#2 captaincrab55

 
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Posted 23 October 2011 - 05:31 AM

Jen Z, Don't allow yourself to get stressed about this new diet... Stress is a silent killer that steals minutes from our lives... IMHO, learn to deal with this issue ASAP... You have many friends here to help you and one will soon find that most foods can taste just as Great cooked Gluten Free...
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#3 kareng

 
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Posted 23 October 2011 - 05:40 AM

I know its frustrating.

Most people are trying to be helpful. You might find out about a product or a restaraunt you didn't know about. I usually just smile and say "Thanks" or "I love that product". If they try to give me medical advice that's really wrong, I will correct them. Like all the older ladies that "have Celiac" and tell my mom its OK to take the meat off the bun.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#4 saintmaybe

 
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Posted 23 October 2011 - 08:30 AM

I actually really do relate to this, but my advice would be to switch it around and try active listening. It's a skill I use in sales, and I've found it works amazingly well talking to people about their medical problems.

Sometimes, people really do know someone else that has celiac, and they have very useful advice that I didn't know about. Sometimes they're just excited to share,or they genuinely want to help. Other times, I've found, they're looking for YOUR help, to see if you know any doctors or treatments that are working better for you and might help their friend or family member.

If they're really wrong, or way off base, I'll gently correct them or steer the conversation in another direction if that doesn't seem to be working.

Lastly, my diagnosis (and it's many associated illnesses beforehand) has been the catalyst for some of the closest friendships I've ever had, some with people who had the disease and some who didn't. It CAN be annoying when someone wants to lecture you about celiac (alright, buddy, I KNOW that already). But I would say, for the most part, don't close yourself off, but open yourself up to the experience.
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#5 IrishHeart

 
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Posted 23 October 2011 - 08:33 AM

Humans tend to want to find the bright side and often do not know what to say when they learn that someone has a serious disease. Many people are also inept at true empathy---just listening and being suppportive is often difficult. Not sure why--it should come naturally, but it doesn't. I think it is mostly because they are uncomfortable and want to try and "lift your spirits".

They "mean well" and because they may not understand the ramifications of Celiac, they think it's just "a food allergy" :rolleyes: and with a "diet change" and you'll be right as rain. :rolleyes:

The ones who "get it" best are the ones who live with it every day. ;)

(Man, I used so many "quotation marks" in this post :lol: LOL)

Seriously, though you will grieve a bit and then, you will embrace your chance to live a full and healthy, happy life off gluten. :)

If they are close friends and family, you COULD just say gently...I just need a hug and some sympathy, no advice just now, okay?

For the record, I have not had one single person in my life WANT to learn about celiac disease or the gluten -free diet yet (except hubby and my Mom)....and I was very ill for many years and suffered multiple health issues as a result of undiagnosed celiac. They do not know whether to be happy for me or not at this point. They are just relieved that I am not dying and losing brain function and muscle mass, etc..anymore. Some family members know they probably have it, too BUT do not even talk to me about it or wish to be tested, despite all the info I have sent them...ah, DENIAL anyone?? :blink:

It is frustrating-- and we can help you mourn a bit if you want. We all did it, too. Hang in there, hon!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 Leper Messiah

 
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Posted 23 October 2011 - 10:00 AM

Yeah get that a lot, "well I'm sure they'll be able to do something gluten free for you"...yeah but how can you be sure I won't get CC'd which I'm 99% sure is what will happen?! Then you just look like a complete douche.

Agree that they are just trying to help but until gluten and specifically being CC'd (as avoiding gluten is an easy penny to drop in all but a few people's heads) is given more public profile, which I'm sure it will given it's increasing prevalence, then we'll just have to try not to blow a gasket every-time someone offers advice.
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#7 IrishHeart

 
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Posted 23 October 2011 - 10:10 AM

BTW Jen, I think you may hold the record for the longest topic title EVER!!! :lol:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 love2travel

 
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Posted 23 October 2011 - 10:19 AM

BTW Jen, I think you may hold the record for the longest topic title EVER!!! :lol:

Not to mention one of the catchiest titles EVER! :P
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#9 kareng

 
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Posted 23 October 2011 - 10:26 AM

Not to mention one of the catchiest titles EVER! :P


Surprised me, too! I thought there would be a character limit! :D

If you are sent to a prison for the Criminally Insane, I doubt they will feed you gluten-free.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#10 IrishHeart

 
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Posted 23 October 2011 - 10:36 AM

Surprised me, too! I thought there would be a character limit! :D

If you are sent to a prison for the Criminally Insane, I doubt they will feed you gluten-free.



She will never be convicted! .... she could probably get dozens of equally annoyed celiacs (and you can sign me up, BTW) to testify on her behalf! :lol: :lol: :lol:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 mushroom

 
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Posted 23 October 2011 - 10:45 AM

Perhaps instead of hurting the clueless ones you could just tell them how lucky THEY are because it IS worse!! As Kareng says, you sure don't want that insanity defense to fail you :ph34r:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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#12 ravenwoodglass

 
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Posted 23 October 2011 - 03:32 PM

Well your in the right place to gripe so feel free to vent all you need to. It is a big adjustment at first and if folks are not celiac it is hard for them to understand that it means a lot more than just not being able to eat wheat bread. We all have moments when we want to deck someone. Take a deep breath or grab a pillow and scream into it and then come here. Do keep in mind also that you are likely going through withdrawl if your newly diagnosed and that can make us very, very moody. That will pass.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 Jen Z

 
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Posted 23 October 2011 - 05:03 PM

I moderate on 2 health related groups for dogs so I know subject lines need to stand out to be seen ;) Human doctors are not the only ones that don't listen to their clients- vets don't either so I along with others help the human learn how to care better for their pets specific illnesses. Luckily, I have a doctor that is great about following through on testing and so far I feel like I am getting good care. I am hesitant to go through my litany of aches and pains with him. After reading so many posts today, I see a lot of common ground with some of these odd symptoms I have been having and was just chalking up to the aging process. I plan to ask for bone density testing too since my mother was diagnosed with osteo at an early age.

And yes, there IS a character limit! I had to reword a couple of times :)
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#14 theWiers

 
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Posted 23 October 2011 - 05:21 PM

Jenny I completely agree. And yes I realize it could be worse. I read in a book that someone with cancer would gladly trade places with me. ok well they probably would but what is wrong with saying "hey you know what that sucks?" I don't think I have had one person say that to me, I get the same responses you do.

I guess I just try to educate people about what is really going on. The newest way I have thought of to explain to people what is it like is to say it's like going to the pool with all your friends, but being told you have to stay in the kiddie pool while everyone else swims in the regular pool.
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#15 zus888

 
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Posted 23 October 2011 - 05:49 PM

I don't know, but I'll be the first one to use that defense. I don't really get that from my friends. It's the happy celiacs that get to me. No offense to any of you happy folks. Some of my friends have told me, "Damn. I'm sorry. That's gotta suck." And I feel validated and tell them, "yes, it does. it sucks a lot."

And I totally understand why some people are so happy to have an easily treatable disease when they thought they were dying. I get that. I would be happy, too, if I finally got a diagnosis after years of pain and suffering - especially one that would be essentially cured by adhering to a strict gluten-free diet.

But...my bitterness stems from the fact that I have a liver disease that will NOT be remedied by this diet - one that will likely - statistically speaking - cut my life short. So, I face a shorter life. And in that life, I'd sure like to enjoy every moment. Now, not only do I get to face the prospect of having a shorter life, I ALSO get to go through it denying myself of some of the things I get a GREAT deal of pleasure from. Since going on the gluten-free diet, I've been mostly bitter and miserable. Am I happy? No. Should I be? Probably. I understand that food shouldn't be so important to me. BUT. IT. IS. There has not been a day that goes by that I don't think about dinner rolls. I fantasize about them. I DREAM about them. They TAUNT me. MIL had us to dinner and on the table were DINNER EFFING ROLLS!! I felt like I had been sucker punched and I had images in my head of cutting my arms to hurt myself. Not to kill myself, but to maim myself to deaden the emotional torture I felt. The physical pain of hurting myself is FAR easier to deal with than being in the same room as those effing rolls. Obviously, that wasn't an option, and then I considered taking Rx pain meds to deaden the pain. They would make me not care so much. BUT I did manage to get through the meal, but not without a few tears. THIS IS NOT WORTH IT!!!!! I don't want to continue living my life feeling this way!

Thus far, there have been NO TANGIBLE benefits to going on this stupid diet. I've had a CT scan and my abdominal lymph nodes are STILL enlarged. Stable, but enlarged. gluten-free has done nothing to reduce them. Liver also stable. I've been stable for years, and it has nothing to do with my diet since I've been on the diet since March this year. I've not experienced more energy or better brain function. In fact, my ability to remember things has taken a massive nose dive over the past couple of weeks. This diet has been nothing but limitations. And I'm sick of it. AND, I'm giving serious consideration to ditching the damn diet and getting back to enjoying my life again.

So, yeah, I GET the insanity plea. I'm freakin' THERE! I should have started a new post, but I just don't have the energy.
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Suzanna




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