I Hate This Disease

[num1habsfan]

Yeah, baby. Sure do. Please e-mail me your #. . . . Lynne

Do you live in Canada?

~lisa~

[tiredofdoctors]

Lisa -- Nope -- I live in Louisville, KY -- but I don't care. Neither does my DH. Just need your number so that I can call you! I think he's getting used to high phone bills! Have met a friend of two who is long distance, or VERY long distance!

[Rikki Tikki]

Jen:

That was so sweet of you to say. Please know that each day week or month you will get better. What helped me initally, and it's taken me 3 years to feel good, is that I finally had an answer so I was able to work with something and not continue to think I was crazy

[num1habsfan]

Lisa -- Nope -- I live in Louisville, KY -- but I don't care. Neither does my DH. Just need your number so that I can call you! I think he's getting used to high phone bills! Have met a friend of two who is long distance, or VERY long distance!

Um well not sure how happy my parents will be getting a call from the U.S., but ok..maybe we'll work out a time-frame, I'll ask you more in a pm

~lisa~

[ms-sillyak-screwed]

Lynne -- Sorry about the job...

I'm going to speak for all of us here, "WE NEED YOU HERE!" If you were to take a job, even if your were doing consulting or something -- we all really need you here. You add so much to this site you help more people then you know. You have given so much to so many of us. God has a plan -- he want you to help us with celiac disease.

Patti -- I feel the i·so·la·tion too.

Most all of you have families and/or a hubby. I don't! My daddyO (85) only winters with me.

Dating with celiac disease? Celiac gives a new meaning to high-maintenance.

I hate having celiac disease and being alone!

[jenvan]

Thanks for sharing your stories everyone. Sometimes I feel like people just don't understand what I am going through, but I know you all do. You live it everyday.

I was finally diagnosed with celiac after being sick for a year and a half. I suspect I've had it all my life, but major symptoms only came out more recently. Over the past year, I've also found out I have Lyme Disease, osteoporosis, and endometriosis. Each time I came home to tell my husband about a new diagnosis, we'd both laugh. Then I'd cry. It's funny, but it's not. I've had to alter my life drastically because I was so sick. I used to get the worst stomach pains and I always felt like I was going to faint. I knew food was the culprit, I just didn't know what kind it was. Last year I had to turn down a teaching position and I just barely graduated from grad school. I guess when you're 28 you feel like so much of your life is ahead of you, almost as if you're invincible. It's been so humbling to be unable to work and do the things I used to do.

I'm trying to look on the bright side and concentrate on eating and living healthy. I took up a part time job this year and started going back to the gym to work out again. I've been reading a lot about celiac disease and have become much better at seeking out and cooking gluten-free foods. I feel like I'm on the mend and that my life is almost back to normal, but I don't want to rush it. I'm even looking into teaching jobs for next year again.

Anyways, I want you all to know that you are inspirational to me. It's wonderful to know that I can always share my thoughts with such a super group of people. Thanks for being here for me.

Jen-- (my name-friend : )

That is a good way of putting it--humbling, I agree. So glad you did make it thru grad school...but sad to hear about the job. It sounds like you have a good attitude...trying to stay positive and getting 'back to life' one step at a time. Hope things continue to move up and up!

[DingoGirl]

Patti -- I feel the i·so·la·tion too.

Most all of you have families and/or a hubby. I don't! My daddyO (85) only winters with me.

Dating with celiac disease? Celiac gives a new meaning to high-maintenance.

I hate having celiac disease and being alone!

I know EXACTLY how you feel. It's just the dogs and me, and I haven't dated since the breakup in January....can't imagine what that will be like but it makes us seem SO high maintenance.

I, too hate having Celiac and being alone. But, have faith, there is someone out there for us...

And I agree, we definitely need Lynn here.

[Jana]

I am so angry, no furious, and sad about this stupid disease. I hate it. I REALLY hate it. I got a call tonight from a recruiter -- I was offered a position as a clinic director for a hushy-tushy PT clinic. It would have meant big money, plus great benefits. I don't know who gave them my name -- I think it's someone that I worked for before I was in PT school, and then who taught me when I was there. I had to tell the recruiter that I'm sick, and that I'm in a wheelchair, so I couldn't do manual therapy. I told him that I was sorry, but I knew that I couldn't take the job. He said he was sorry, but he thanked me for my time.

I HATE THIS DISEASE. I HATE WHAT IT HAS DONE TO ME PHYSICALLY. I HATE THAT I DON'T HAVE COORDINATION ANYMORE, AND THAT MY ARMS AND LEGS HAVE TREMORS. I HATE THAT I CAN'T TALK RIGHT WITHOUT MEDICINE. I HATE THAT IT'S STARTED AFFECTING MY BRAIN'S ABILITY TO COORDINATE MY BLOOD PRESSURE, AND IN 15 MINUTES TIME I GO FROM IT BEING HIGH ENOUGH TO BE STROKE LEVEL DOWN TO THE POINT THAT THEY CAN'T GET THE LOWER NUMBER BECAUSE IT'S SO LOW, AND THEY WANT ME TO GO TO THE HOSPITAL. BUT MOSTLY RIGHT NOW I HATE THAT I HAD TO TURN DOWN THAT JOB. WHEN I GRADUATED FROM PT SCHOOL, IT WAS THE EXACT PLACE I WANTED TO WORK. I WAS 31 WHEN I GOT TO GO TO COLLEGE -- I WORKED MY BUTT OFF FOR THIS. I GRADUATED WHEN I WAS 35. GIVEN THAT I HAD TO CLOSE MY OWN CLINIC, THIS WAS THE NEXT BEST THING, AND I CAN'T DO IT. AND I HATE THAT I HAD TO ADMIT THAT -- OUT LOUD.

If anybody else wants to vent about having this stupid disease, please feel free -- I especially don't want to know that I'm the only one who is so FRUSTRATED right now . . . .

I know what you mean about being angry. I miss a lot of work because I went misdiagnosed for so long. (10 Years) and now I have permenent damage. Anyway, I have flare ups, and miss work. My job is not understanding. They get mad, and say "you need to think of some kind of solution". What Solution??? I also feel irritated when frineds call and want to go out to dinner and I shoot down every place they want to go because that place has no gluten-free stuff. There is only 3 places I can go, and even then, they have messed up before. I also get so tired of calling manufactors to make sure something is gluten-free, and being told "We do not know" I am like, if you make the product, you better sure as heck not what you are putting in it! What really pisses me off is when they say "If you are not sure, just don't eat it". That really pisses me off. (I hear that so much) I am also sick of getting tired so easily! I feel like such a failure because it is hard for me to handle work full time, and also keep up on house work, laundry, cooking healthy meals, and taking care of my husband and daughter. I get so exhausted because I do not absorb vitamins and all that very well. I tired of being tired. I hate that stress really impacts me so hard physically. Then of course these things cause me to feel overwhelmed and I get depressed. I am sorry you had to turn down your dream job, that sucks! I hope you feel better!

[ms-sillyak-screwed]

I hate life like this!

Yesterday I went to a birthday party. And had to explain to each and every guest even the 3 year-olds why I can't eat cake and ice cream, flavored coffee. or for that matter [anything] they were serving. They looked at me like 'yeah right!'

When I came home to my big empty house...my little doggie greated me...I wondered what is my purpose? Being beautiful and all alone? Why? Why am I plaged with a sick life? Why has this become my destiny?

Okay if this is my fate -- then -- I would like to live it for a cause -- like I would like to take on the system. Stop belly-aching and move through this --- and --- help make life better for all of us in celiac-land. But an 'army of o-n-e' doesn't work.

[Guest Pixi]

That is awful Lynne =(

I'm sure more golden opportunities are on the horizon.. the right one will come when the time is right!!!

At first, I thought I was fine with this, but now I'm not.

I want to eat @ work (restaurant) and I can't. 13 hours.. I can't eat.. I have to have my Mom deliver me food (which, inevitably, always ends up having soy sauce or something I can't have so I have to eat the fruit from the bar.) I want to share the nachos and bread the table when I go out to eat w/ my friends. I can't.

Mostly, I miss just putting on lipstick without worrying if it has gluten. Or taking a simple vitamin without having to check for gluten sources. And, I often wonder what guy is going to be able to put up with this one day and want to marry a woman who can't even eat the food she'd be cooking for him (or children!) Maybe he'll think I'll pass this on to kids and won't want to get into that.. I don't know.. just random strings of thought..

Ok, done.

[ms-sillyak-screwed]

Mostly, I miss just putting on lipstick without worrying if it has gluten.

I hate going in to Open Original Shared Link feeling the same way PIXI does...

All day today -- I've had a strange ichy feeling that I have DH. Shh -- don't tell my immune-system!!!

[num1habsfan]

Lisa -- Nope -- I live in Louisville, KY -- but I don't care. Neither does my DH. Just need your number so that I can call you! I think he's getting used to high phone bills! Have met a friend of two who is long distance, or VERY long distance!

Lynne, I have been trying to PM you but it says your inbox is full or you dont have PM enabled...

~lisa~

[StrongerToday]

Lynne, I have been trying to PM you but it says your inbox is full or you dont have PM enabled...

~lisa~

Lisa - I think she's left us!! Check the "What happened to sex thread" ...

[jerseyangel]

Lynne, I have been trying to PM you but it says your inbox is full or you dont have PM enabled...

~lisa~

Lisa--Lynne left Celiac.com. She left her email address in her last post in the thread "Where did the sex and Celiac thread go?".

[num1habsfan]

Lisa--Lynne left Celiac.com. She left her email address in her last post in the thread "Where did the sex and Celiac thread go?".

I guess I didnt see since I didnt go into that thread...and the other one has seemed to vanish too?

Anybody else get her email?

~lisa~

[againstthegrain]

I hate this disease as well. Yes, things could be worse but it is still hard

[Judyin Philly]

Lynne's personal email address from her last post on another thread.

" Please know that I will be blocking any e-mail messages that come from Celiac.com, including personal messages, as they immediately transfer me to the forum. They can, however, contact me at my e-mail address, through their personal e-mail server, and I encourage and welcome the chance to speak with them. My address is bodyworxinc@hotmail.com. I do have several personal e-mail addresses from the friends I have met here, and of course, will continue to stay in touch with them. " quote from Lynne----

She'd love to hear from you

Judy in Philly

[evie]

i am so sorry for those of you who have had to give up jobs and have such severe health problems. I too had to quit doing my chosen work but am in better situation than a wheel chair, even if I do have to get one for large stores, due to weakness. We just don't know other people's situation untill we walk in their shoes!!

I like this used by several!! {{{{{{{{{{{ HUGS }}}}}}}}}}} to all evie

[Nancym]

It isn't the disease I hate so much as the lack of diagnosis and the cumulative effects it has on our health. :\ And the lack of acknowledgement of a non-celiac gluten sensitivity.

[num1habsfan]

Lynne's personal email address from her last post on another thread.

" Please know that I will be blocking any e-mail messages that come from Celiac.com, including personal messages, as they immediately transfer me to the forum. They can, however, contact me at my e-mail address, through their personal e-mail server, and I encourage and welcome the chance to speak with them. My address is bodyworxinc@hotmail.com. I do have several personal e-mail addresses from the friends I have met here, and of course, will continue to stay in touch with them. " quote from Lynne----

She'd love to hear from you

Judy in Philly

Thanks Judy..

~lisa~

[Mango04]

It isn't the disease I hate so much as the lack of diagnosis and the cumulative effects it has on our health. :\ And the lack of acknowledgement of a non-celiac gluten sensitivity.

I definitely agree!

[mortamer]

Big Hugs

I am very new to this. It has only been since March that I had this. I had NO idea that it was this disabling. I myself am in a wheelchair since birth. Do you know what it exzctly effect and how. My boyfriend and I just thought it was just about Gluten. I keep reading that it dabilitates you too. I just thought it was normal for Me to have weak days because of my birth defect. Any insight would be helpful.