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People Who "bailed" When You Were Sick/crippled With Pain?


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#31 adab8ca

 
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Posted 17 June 2011 - 04:32 PM

"I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me."


OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.
You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!
Hugs hugs hugs and calming, cooling nerves...
  • 1
TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

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#32 IrishHeart

 
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Posted 17 June 2011 - 04:33 PM

I too have a very supportive husband. He has been fantastic. He loves to cook and has taken it upon himself to experiment with lots of different recipes. I haven't had anybody actually "bail" on me, but I don't have much family left here anyway. Some friends seem not really interested when I mention success with a recipe or something, so I've stopped talking about it. I think when we move to Florida later this year there might be some challenges. My husband's brother and his wife will want us to go out with them a lot and have holidays at their place and I hope they will understand my issues. I don't want to be a bother, but don't want to turn into a hermit either. :(



Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)
  • 0

"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


#33 IrishHeart

 
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Posted 17 June 2011 - 04:42 PM

"I just kept fighting and he just kept saying we could figure it out. I thought my heart would burst the day he told some doctor "I just want my wife back"...It was anguish for him to watch me deteriorate physically and mentally. I felt so guilty as I thrashed around in bed in burning pain and I did not want to keep him awake all night, so I would just walk quietly round and round my house, sobbing all night long. For months and months.

But he would not believe I wouldn't get well. That faith in me sustained me."


OMG, Rick said the same thing "I just want my wife back"...He had my back the whole time and even though I was too ill to appreciate it at the time, I really get it now. And I TOTALLY| TOTALLY and TOTALLY (did I mention TOTALLY) relate to the stumbling around the house, sobbing in pain so as to not keep the hubby awake.
You will get there. For sure. I have started having joy in my life again, I NEVER thought I would. And some days are bad, so I really treasure the good ones. I think until someone has gone through "this", they do not get it. I would always hear about people struck with mystery illnesses that nobody could figure out and NEVER dreamed I would be one of those people that was the star of the story!!!
Hugs hugs hugs and calming, cooling nerves...



thank you, thank you! --for sharing this because I felt the same way. My sister said "We need Dr. HOUSE!! someone has to help you!" I felt like I was being "poisoned" --like someone in a really bad mystery movie. We left no stone unturned.... yet, it came down to me. And a lot of research--on this site too! Go figure.

My nerve pain is calming down,although the doc says that could take years (ugh) and my muscle recovery is slow. I never lose focus--on my FUTURE, not the past. Thanks again, Ada!!
  • 0

"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


#34 Diane-in-FL

 
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Posted 17 June 2011 - 04:42 PM

Diane, I think if you can educate the in-laws in a "fun way" somehow it may make it easier. Have them to YOUR place for a few delicious gluten-free meals and let them see for themselves it's "real food". I tell my family--hey, I am not a leper, you know!! and they laugh. :lol: Diffuses the fear and confusion a bit.

And PS...from Maine to Florida--that's going to be great come next winter!! Lucky girl!! :)


Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)
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#35 IrishHeart

 
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Posted 17 June 2011 - 04:48 PM

Yeah, I can't wait to say good riddance to winter. And maybe having a Whole Foods Market closer than 3 1/2 hours! B)


LUCKY!! I don't know which one would be more exciting for me...LOL LOL Best wishes!!
  • 0

"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


#36 bigbird16

 
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Posted 18 June 2011 - 04:45 AM

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.
  • 1
Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made

Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7

"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)

#37 IrishHeart

 
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Posted 18 June 2011 - 06:58 AM

The friend thing is hard. I think part of it is that people are wrapped up in their own lives, in their own problems and issues and don't necessarily notice or don't know what to do with more than what's right in front of them. It doesn't mean they don't love you. They're just a little clueless or limited in what they feel they can do. Some are only good at expressing in certain ways. I had less than zero support when I was at my sickest. I guess I'm lucky that I didn't actually drive anyone completely away. But it would have been more help than anyone knows to once have been asked, "Are you ok?" I think because of that experience, I try to be more attentive, so that none of my friends ever feels so hurt and alone. But on the flip side, it also solidified that I'm the only one I can count on to be there for me.



Aw hon, if people left-- it would not have been because YOU drove them away. This isn't our fault that we got sick, although sometimes, I have felt "guilty" that I was unable to do what I used to do. I know that's silly, yet it was what I felt. I don't feel that way anymore.

I have always been a "giver" as someone in the thread has mentioned--but I did it because I LIKED to do those things for others! I do feel my empathetic side is maybe "over-the-top" and perhaps I go overboard with "feeling" what others feel and trying to help. I didn't think that was a "bad" trait, though. I thought everyone was that way. :rolleyes: (nope)

You are so wise!! Depend on yourself.
Thanks for your thoughts! ;)
  • 0

"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


#38 IrishHeart

 
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Posted 18 June 2011 - 07:02 AM

I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.
One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o
That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!
  • 0

"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


#39 Diane-in-FL

 
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Posted 18 June 2011 - 07:18 AM

I slept on it last night--all your thoughts --and you guys are very wise.

I always thought I was pretty independent but when I was ill, I found I was looking for comfort and validation. I agree--it would have been nice if the people I thought were my best friends had asked once and awhile "How are you? Can I come see you?" anything....and when I sent email health updates, I got silence.
One told me, "Don't send anymore unless there's something new. I don't have time to read long updates only to learn that nothing has changed." :o
That just about broke my heart!

I did get a lot of "I'll keep you in my prayers" a lot...which is very sweet and appreciated, but not the same as a loving hug or reassuring presence.

Maybe I have to adopt my hub and Richard's approach...stop expecting things and then there will be no disappointment.

I have learned a great deal from being quite ill---I am a survivor. I am strong. I am a fighter. I am a tough cookie :lol: I have faced hard times in the past and came out the other side...and I'll do it again.(and now, I know who I can trust B) ) These are good things to learn about yourself.

Thank you all so much for your thoughts!! It gave me perspective and a reassurance that I'll be fine --in spite of the disappointment. Love you guys!



You are awesome! And inspirational. We love you too! :)
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#40 IrishHeart

 
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Posted 18 June 2011 - 07:28 AM

You are awesome! And inspirational. We love you too! :)



and humbled, now,too..gee whiz, wow....thanks Diane...XXOO

Hey...how's the lobstah in buttah up theya?? (I think I told you this..I grew up in Bahston) :lol:
  • 0

"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


#41 mushroom

 
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Posted 18 June 2011 - 07:45 AM

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#42 celia_with_celiac

 
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Posted 18 June 2011 - 07:48 AM

I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia
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~Celia M Hilts

#43 IrishHeart

 
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Posted 18 June 2011 - 07:57 AM

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:

:lol: :lol: :lol:
  • 0

"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


#44 IrishHeart

 
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Posted 18 June 2011 - 08:02 AM

I comppletely understand... I have been ruled out as the outkast and biggest complainer in the family and I always feel like they don't want me around bc of my special food needs. My so called "best friends" ditched me to live there own lives and not care once to check on me. It makes me feel like I am not good enough and they make me believe I am just a hypochondriac but i know the pains and feelings I am going through. People are just ignorant anf writing them off is the best thing to do bc what is more important is YOUR HEALTH!!

~Celia



You are no hypochondriac!! Sorry anyone treats you that way. We all know this thing is for real, hon. I wish you lived next door, you could come here for dinner and hang with me!! :)

When anyone says "you are making things" up? you say.."Really? What is my motive?" It's not like you're a little kid trying to ditch school, for pete's sake....that will shut them up.

Ignore those who doubt. In time, you will be well and you can say "I told you so!"
And if they are family, chances are, their health will take a dive and you'll look like a genius.... ;)

Celia..I see you are a "newbie"...if you need any help, please ask. :)
  • 0

"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


#45 kareng

 
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Posted 18 June 2011 - 08:04 AM

Hey, I usually eat lobstah and buttah too, except after three months here when I start eating lobstirrr and buttirrr :lol:


I can still eat Lobster & buttah! I can't eat sticky, mushy white bread! :D
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