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Hoping To Meet People Like Me


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15 replies to this topic

#1 C.S. Blogsmith

 
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Posted 03 March 2009 - 12:54 AM

Hi,
I thought my friends were nice people until I became too sick to work or pay for a dinner out or in general be fun. It was an eye-opening experience. I haven't yet figured out whether my friends were especially superficial or disloyal or if this is what people are like and I just never noticed. I lost my boyfriend to the complications as well...

I'm sort of in limbo. I'm extremely philosophical and artistically-minded. My friends are the few people I did get along with because I'm a total nerd. I like discussing literature, poetry and philosophy. It's a core part of my personality. Even when I was working overtime I devoured novels like War and Peace in only a few days. Now that I have lost all of my friends, I have no one to talk to but my younger brother who likes to talk about video games and such.

I am a social person. I want to meet people who share my interests, but unfortunately, I am currently housebound and haven't left my home since July. I am so bored that all I do all day long is design and write blogs. They are partly intended as a way for me to meet people, but I also find creative expression to be very therapeutic. (I have links to my blogs in my profile if you are interested in seeing them. I don't think I have any readers yet, but I've actually put a lot of work in to them--for no one but myself so far).

Anyway, I would love to meet some people like me.
Thanks, and I hope for some replies...

C.S.
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#2 mushroom

 
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Posted 03 March 2009 - 01:39 AM

Welcome to the forum, C.S. Blogsmith. I feel your pain.

While I have no claim to special artistry or to philosophical brilliance, there is no doubt that celiac disease does change one's relationship to one's friends and to life in general. It is said but true, not matter how much we deny it or wish it were not so. Even those who stick by us are afraid to invite us to dinner unless we bring our own food because they are unsure if they can accommodate our special needs. It is very intimidating to be told, yes, I would love you to cook a meal for me, but please don't put in any gluten, soy, corn, nightshades or lactose. They look at their recipes and none of them match those specifications. So what do you do? Give them some recipes; tell them which restaurants you can eat at, or invite them to your house. Often, because of what gluten has done to us, we do not feel that we can make the effort to have them come to our house. So yes, because so much social interaction revolves around food, it can be isolating.

But we just try to get on with it and make the best of what we have to work with.

Before I self-diagnosed myself as celiac, I was stricken by rheumatoid arthritis which later turned in to psoriatic arthritis. At that time we had just moved from California to New Zealand (I am a Kiwi), so I did what you did, and (pre-blogging) wrote a daily journal to all my friends describing our experiences, the joys and pains of building a new house--entertaining them with all the ups and downs--and interspersing them with daily observations of what was happening outside my living room window where I was confined much of the time. I was enchanted to rediscover our native birds and flora, and watch things pop up outside that window seasonally. It is a very therapeutic thing to do. Of course, I had a captive audience on my email list. I have not had time to explore your blogs, but I will.

I hope you are soon able to move outside your house and relate more to the outside world. My bridge friends have been very good to me and make special efforts to provide suitable food for me at our traditional "British" afternoon teas halfway through our afternoon bridge games, bless their hearts. One even came and borrowed some buckweat flour to make buckwheat pikelets for me (we live about an hour from the nearest place where such can be purchased).

So do not give up. Those who will abandon you do not deserve you, and you will find others who will relate to you in ways other than food.

I send you <<<hugs>>> and good cheer.
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Neroli


"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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
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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#3 psawyer

 
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Posted 03 March 2009 - 03:05 PM

There are many good people here who support each other. Have a look around, and join in the discussions that interest you.

For some really funny stuff, there is an ongoing thread now in its third year. You don't have to read the whole thing (although I actually have), just jump in on the current page <click here>. It is little online community where we share laughs and life experiences. Just watch out for the phunny fone-ett-ick spellings that we are given to. :)
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#4 Jestgar

 
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Posted 03 March 2009 - 03:25 PM

I was a whole lot less pleasant on gluten. :(

You'll find a new community, both online and in person. Just hang in there.
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"But then, in all honesty, if scientists don't play god, who will?"
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#5 curlyfries

 
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Posted 03 March 2009 - 03:38 PM

For some really funny stuff, there is an ongoing thread now in its third year. You don't have to read the whole thing (although I actually have), just jump in on the current page <click here>. It is little online community where we share laughs and life experiences. Just watch out for the phunny fone-ett-ick spellings that we are given to. :)


.....and we discuss literature.........write poetry <snigger> :P .......... . . ... .we can even get philosophical about things..... :rolleyes:.....like expensive paintings that look like poop!

ooh......and we also have bird watchers and avid gardeners :D
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~~Lisa~~

"The greater the obstacle, the more glory in overcoming it."--Moliere

"I may not have gone where I intended to go, but I think I have ended up where I needed to be."--Douglas Adams


Friends may come and go but Sillies are Forever!!!!!!!--Amanda
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#6 curlyfries

 
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Posted 03 March 2009 - 03:41 PM

I was a whole lot less pleasant on gluten. :(


Well ya can't tell that now! :P
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~~Lisa~~

"The greater the obstacle, the more glory in overcoming it."--Moliere

"I may not have gone where I intended to go, but I think I have ended up where I needed to be."--Douglas Adams


Friends may come and go but Sillies are Forever!!!!!!!--Amanda
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#7 jerseyangel

 
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Posted 03 March 2009 - 04:02 PM

Hi C.S.--I'm glad you found us. :)

Tis true, there are lots of great folks here--I hope you will feel free to jump in anywhere. There is a ton of valuable information to be found, from recipes to stories on how others cope with just what you are going through.

I also hope you take Peter up on his suggestion--sometimes it just nice to "escape" for a little bit ;)
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#8 C.S. Blogsmith

 
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Posted 03 March 2009 - 04:18 PM

I know I was unpleasant, but I tried so hard to be pleasant. I guess I had always had the theory that the great destroyer of my friendships was my Multiple Chemical Sensitivity. Most people can't even get near me without me becoming too sick to function (due to chemicals including fragrance from personal care products they use). I practically go into a coma. My boyfriend took it personally, and I have not yet been able to get anyone to understand that my impairments are not behavioral--that they are not to be taken personally because they are not my chosen behavior, but the result of a limitation--the intention of a bad disease that I did not invent and cannot control. For example, if I stop speaking when people are around (which happens) it is because I'm so impaired I can't think, much less communicate. It is not because I suddenly lost interest in them (as my boyfriend always assumed).

I know these complications are not their fault, but nevertheless they did not stick by me like I stuck by them. I guess I want support so that I would not be the only one who carries the weight of it. I used to help my friends carry the weight of their struggles. I guess I thought it's what friends do.

(MY CURRENT STATUS: I've been off of gluten for a year and a half and I have been de-toxing off and on for 2 years--for the MCS).
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#9 ianm

 
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Posted 08 March 2009 - 04:07 AM

When you get sick you find out real quick who your real friends are. The good thing is you end up making better ones. My wife divorced me but I ended up dating her best friend (now ex-best friend) for three years. B)
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#10 caek_is_a_lie

 
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Posted 08 March 2009 - 10:58 AM

Any disease can do this to people. It totally happened to me when my Narcolepsy got bad. I couldn't go out, I was a zombie when I did, and after turning invitations down, people stopped asking, even when I was fine. But eventually I was able to make new friends and find a new boyfriend who is understanding. It's easier to filter out the baddies when you know what you're dealing with health-wise. When it hits you and you find out the people around you are jerks who can't deal, it's devastating. Especially when it's loved ones who are supposed to support you no matter what.

After dealing with that 10 years ago, this Celiac thing doesn't seem so bad. I've been hesitant to eat out with people, but I'm starting to get the hang of it, and even the people I work with are making the extra effort to make sure I can be included, too. I'm really grateful for that after all I went through years ago.

Obviously being house-bound makes it harder to socialize, but you're always welcome to chat with me online if you want. :) My YahooIM ID is in my profile.
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#11 whitball

 
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Posted 08 March 2009 - 04:55 PM

I was an awful pre-celiac! I was always in pain. My legs would hurt so bad, that I needed to stay home from work on many occasions. My friends were awful pre celiac too. They thought that I was making things up just to go home. They often ignored me when the pain was so bad that I would cry. I was diagnosed in 2006, and my friends actually educated themselves on the disease. I think that they realized that they were treating me badly. When we have a girls night out, we go to a place where I can eat. It has turned out pretty nice for me. I hope that things get better for you and that you can connect with people with the same interests. Shame on the people who were too shallow to stick with you through this. You deserve better.
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Positive biopsy, positive blood test in 2/2006
Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)
Interstitial cystitis diagnosis 2004
Hysterectomy 2003
3 for c-sections, 2 laparoscopies to remove abdominal adhesions
Abnormal heart beat when tired or glutened

#12 bmpress

 
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Posted 10 March 2009 - 05:14 AM

[quote name='C.S. Blogsmith' date='Mar 3 2009, 04:54 AM' post='514947']
Hi,
I thought my friends were nice people until I became too sick to work or pay for a dinner out or in general be fun. It was an eye-opening experience. I haven't yet figured out whether my friends were especially superficial or disloyal or if this is what people are like and I just never noticed. I lost my boyfriend to the complications as well...

Hi,
First of all, any "friend" who has no tolerance for a friend-in-need is no friend at all. Good riddance to them!

Second of all, once you are on a gluten-free diet long enough you will not be sick, you will be able to go back to work and resume your life.

It will not take long for you to get back into the swing of it....Good luck and don't feel sorry for yourself...its counter productive.
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Barry

#13 debmidge

 
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Posted 11 March 2009 - 02:56 AM

Dear Blogsmith,

My husband had the same experience when he first became sick in 1977 - but he did not know
he had celiac disease; thought it was colitis. When he was 26 years old his boy-hood friends left him flat one by one. To this day none of them keep in touch with him. He is better off without them.

We married after he got sick and pretty much it's just the two of us though the "thick and thin." People have come and gone from our lives - not understanding even the colitis during those early years. But when the celiac disease diagnosis came along, that pretty much put the whammy on it. Now it's my husband who is avoiding people.

As long as you are willing to get out there and develop new relationships, it'll happen; but only when YOU are ready for it.

Best wishes
DM
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#14 Lexi

 
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Posted 12 March 2009 - 05:50 PM

I haven't really lost any of my friends, but I do feel as if my friends and family get tired of hearing about my health issues and Celiac Disesase. I also have chronic muscle pain. I feel as if nobody I know can relate to how I am feeling on a day to day basis. I keep hoping that I am going to find that perfect person to talk to. I would love to have someone to tell my crazy gluten stories to every night, and know that they could laugh right along with me. I love to laugh and have fun - and I never act my age - but this whole gluten thing is really cramping my style.
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#15 Rusla

 
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Posted 16 March 2009 - 12:29 PM

As I have not been on here in a long time it is still nice to see some of the oldsters like me on here. Jersey Angel, you are looking quite furry today.

Anyway, I am a writer, artist, photographer and I can relate to how you feel. They certainly were not much as friends go, were they? I didn't lose my friends, we still talk by phone. The thing is about this disease you will feel cheated. Where I am there is very little places to go eat for us folks. So my friends go out and have fun and I, stay home and paint and write. Although I consider what I am doing a much more admirable pursuit than swilling alcohol, there are some days I wish I could have dinner with my friends.

I never eat at their places because of cross contamination issues. I also don't want to put them out to attempt to make anything special for me, so I don't go. The thing is until someone has the disease they just don't get it about the disease and I wouldn't expect them to. So in the meantime you have us, we are not the same and as we live in different places and countries it makes it difficult to hang out. We just have to make our own world.
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Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


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