I Hate This Disease

[cgilsing]

Lynn -

(((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))

This disease sucks!!!

Remember we are always here!

[ravenwoodglass]

I agree 100,000% This disease sucks.

I'm quite lucky that I found out so quickly what was wrong with me, and credit goes to my wife for her "off the wall" suggestion to try going gluten free, not the doctors in any respect. Though it was caught early on, my symptoms are extreme and I can see (well feel is more like it) alot of damage was done from when the disease activated and I was diagnosed.

It sucks that I sit in pain every day becuase my arthiritis and fibro (from Celiac) is constantly causeing me pain. I have trouble opening pill bottles, playing with my children, even typing right now! and my career depends on my ability to operate computers...as such I am constantly in pain, or in a brain fog from pain killers. Seriously, I'm 33 years old (today) and I'm complaining about arthritis?!?!?!?!?!

I also wonder how long this will continue, how much worse will it get before I can't work anymore?? How much shorter will our lives be?? Even on the correct diet, contamination occurs, and damage con

But the part that really really really sucks is that this disease goes to my chlidren as well, and probably theirs too. I would do anything to somehow remove that from them, if there was only a way...

But enough about me, some of your stories are humbling indeed. My heart goes out to you, I hope that somehow someway you can get some relief in this world.

I believe things happen for a reason, though we may never know why, we were given this disease for a purpose. Even if that purpose is to suffer just so that awareness can be raised and other people won't have to suffer. I can see that my case has caused my Gi doc to become more educated on Celiac, and is now testing many more people as a result. Perhaps that will help others not suffer as long.

Still doesn't make me any happier though.

Happy Birthday!!!!!! Micheal I don't know if it will help you but what finally helped the most with my arthritis and fibro was eliminating the nightshade family. I avoid tomatoes, peppers, potatoes and eggplant (that ones easy). It has made a real difference. I don't know if it will help, perhaps you've already eliminated those as a possiblity, but if it will help perhaps I just gave you a birthday present.

[schuyler]

I'm sending big HUGS to everyone. I'm so sorry about what this horrible disease has done to you.

Chelsea, that's awesome news about your Grandpa!!!! Miracles do happen!

Happy Birthday Michael!

-Danielle

[ebrbetty]

I Hate This Disease, what has it stopped you from doing?

my answer..LIVING!!

[tiredofdoctors]

Chelsea -- that is SUCH great news about your grandpa -- maybe my brain will develop new pathways. I'm going to go to an occupational therapist who treats children with brain damage. She does water therapy, but she is also certified in NeuroDevelopmental Training. (It's hard to achieve, so it's a BIG kudo). Maybe she can help my brain teach itself to re-route. Your grandpa is going to be O.K. I know it in my heart.

Michael -- HAPPY BIRTHDAY!!!! I agree with Karen .. awwww to be 33 again. I know, though, that you don't necessarily FEEL 33. I have the arthritis thing, too, with the Celiac. It has gotten better, though, since I've been gluten-free.

erbetty -- I'm so sorry that this stupid disease has taken away so much from you. I know that you deserve so much better. Please know that you're in my thoughts and prayers. There is a post on this thread (it's back a few) by Nini -- it has a website to go to. I'm going to keep going to it. There is a gift of healing hands . . . I think that there's nothing to lose . . . and maybe a LOT to gain.

[ebrbetty]

((((lynne)))) thanks..I just can't believe how much it has ruined my health and life

do you remember which post it was by Nini?

[tiredofdoctors]

Go to page 1 -- it's toward the bottom. It has a link to the website . . . . Lynne

[ebrbetty]

thanks lynne, I found it and did it..hubby just looked at my like I'm really weird, I said "nope, just desperate" My SIL has brain cancer, she goes to a healer, thinking of going too

[num1habsfan]

its stopped me from living...

~lisa~

[jerseyangel]

I've been dealing with this thing for over 20 years. For the past year, it's had a name, but that really does not make it any easier to deal with. I've had relationships with family and friends affected. Between my physical difficulties and the anxiety and depression, I was labeled the sensitive one--and was really not taken seriously. Since I was never diagnosed correctly, I resorted to trying to ignore/hide how I was feeling--I made excuses why I did not want to engage in activites that I had once enjoyed. I couldn't stand people rolling their eyes anymore and thinking it was all in my head. Over time, my world became very narrow. There was less and less that I was comfortable with. Except for my husband and sons, no one really knew the real reason I was keeping to myself. I actually lost my beloved job at the High School twice because of this. The first time was when I quit because I could not stand without fainting for any length of time. Last spring, right before I was finally diagnosed, I had been hired again--but at the last minute had to bow out as the D and the other severe Celiac symptoms had come on and at the time, I had no idea what the problem was. Now, I would never go back--to embarassed. I feel like crying just talking about it. My first day back would have been exactly one year ago tomorrow. I have many days when I can say--well, it could be so much worse--just not today. I hate this. Gluten free almost a year and still not feeling well enough to relax and get on with life. I knew I shouldn't have responded to this--sorry to have gone on so long. I don't know what I would have done without this place to come to.

[ebrbetty]

((lisa))

Patti, your post made me cry, I really don't know what to say, I do understand, just yesterday I told my hubby I'm just a shell of a person, doing what has to be done, work [next to impossible,but my hubby is disabled] grocery store, cook then get in bed and hide away hoping this will all get better..

I want you to know you have really helped me, you have always answered my posts with kindness, given me some great advice, let me vent when need be and helped me to not feel alone..I thank you for that and I'm sending you love and hugs!!

Betty

[jerseyangel]

Thanks Betty--wish we were together this afternoon--we could cry and get it all out together. I feel a little foolish, but I guess I really needed to say it "out loud" as it were. I understand completely how you feel--and with your husband being disabled and all--puts more pressure on you. I don't know how you do it. I'm so glad we have each other here--I don't get down in the dumps often, but it's so good to know someone's listening and caring. Thanks

[ebrbetty]

patti, please don't feel foolish, we have to get it out or we'll all go crazy.

we are lucky to have this board and so many great members

[tiredofdoctors]

Lisa and Patti -- your posts made me cry, too. I am so sorry for you both. Patti, I have only been termed a "head case" for the last two to four years. I can't imagine 20 years. My heart goes out to you. You are such a good, caring, person and I want for you to feel so much better. Lisa -- I can honestly say that I know how you feel. I told my husband that I hated the person that this disease has made me -- because I'm not the same person that I was. In that sense, it took my life from me. Also, I'm housebound because of the wheelchair, and any time I venture out into the yard, I have to take a phone in case I fall and I can't get back up. (I've fallen and I can't get up -- had to say it) My thoughts and prayers are going out to both of you -- and I hope that you get healing and relief from this godawful disease.

[jerseyangel]

And for all of us, Lynne. Thank you

[jenvan]

"I was labeled the sensitive one--and was really not taken seriously. "

I hate that for you Patti... I understand. "High-maintenance." There but by the grace of God its us and not them who have it! It does wear you down over time..... Can't remember what it felt like to have no muscle pain--or now, to have clear skin. Too bad we aren't all closer so we could care for one another face to face... I am blessed to have really good friends, but no one really knows what to say or offer... I'm glad you did respond to the post--frustrated for you and angry that your friends didn't pursue you and listen in the midst of everything...

One good thing...took a walk with my best friend tonight and was telling her about some of ya'll and your stories...how great you each are

[Mandy F.]

Wow! All of you are so strong for making it through this long!

I'm still new to Celiac and never had many symptoms but I felt the same way for years about Endometriosis. I would pass out in pain every month and was anemic from blood loss (and celiac?) to the point that they threatened transfusions. I've always been sick, though. I was always labled a hypochondriac by my teachers, classmates, and coworkers. No one seems to understand that there are just those people out there who really are sick all the time!

I've decided that the best thing to do about it is to fight it from within the system . I'm going to school to be a doctor so that I can help all of the people like us who suffered needlessly for years on end because our doctors were too narrow minded to accept that they don't have all of the answers! Lets just hope that I can make it through med school...

[Deej]

I am crying my eyes out reading this thread.

I have been sick my entire life. As a baby, I projectile vomitted breast milk and formula. As a toddler and child I was in and out of doctor's offices with "tummy pain." My parents were told I was a "sensitive" child and there was nothing wrong. I learned to hide my pain but when I passed out as a teen and young adult I'd be rushed to emergency. I heard every diagnosis and opinion under the sun from MS to "have a baby and you'll settle down" to "you're highly stressed" to Crohn's Disease.

I had no "young married life" - I spent most of my first marriage with my late husband nursing me, caring for me, as it was all I could do to work (and sometimes not even that) never mind go out, have friends, a life. When he died three and a half years ago, I was overwhelmed with how unfair it is that he cared for me all those years and when I finally get diagnosed and (sort of) well, he died.

I have never had anything remotely resembling a normal life. Before diagnosis I was labelled (and sometimes believed in the absence of any reasonable answer) that I was a hypochondriac or, worse, that I was making myself sick on purpose. I missed out on dances, parties, vacations - you name it - so severly limited by pain and illness. Post-diagnosis, I have a life but, of course, it comes with restrictions and complications. I can handle those, as much as I rail against them some days, because at least I know it wasn't all in my head, I wasn't a high maintenance princess, stressed type A personality (well, maybe I was, but that didn't make me sick!).

I hate this disease with every fibre of my being. But I am more grateful than I can say for been diagnosed.

[jerseyangel]

"I was labeled the sensitive one--and was really not taken seriously. "

I hate that for you Patti... I understand. "High-maintenance." There but by the grace of God its us and not them who have it! It does wear you down over time..... Can't remember what it felt like to have no muscle pain--or now, to have clear skin. Too bad we aren't all closer so we could care for one another face to face... I am blessed to have really good friends, but no one really knows what to say or offer... I'm glad you did respond to the post--frustrated for you and angry that your friends didn't pursue you and listen in the midst of everything...

One good thing...took a walk with my best friend tonight and was telling her about some of ya'll and your stories...how great you each are

Thanks Jen for the kind words A lovely, intelligent young woman like yourself should be able to enjoy this time of life without the constant pain. I'm glad you have a friend to spend time with who will listen--would love to know what she thinks of our quirky little group! I agree that it's too bad we all aren't closer--but I think we make up for that in spirit

[DingoGirl]

Hugs, love and prayers.

[Rikki Tikki]

I am sorry to hear what all you are going through. It seems like yesterday and sometimes a lifetime ago that I felt that way. When it is bad, like tonight I just log onto this site and tell myself never give in, never give up. I look to all of you for inspiration and it always seems to be there. I am grateful for all of you (

[tiredofdoctors]

I do think it's a shame that we can't all be closer so that we could have a physical get together. I'm grateful for cyberspace, though . . . it let's me know that I'm not alone. (Especially being cooped up here all day -- who knows how many are in our community????)

Lisa, I'm concerned about you. I've said some extra prayers for you, but I really want to talk with you, if that's O.K. If you could e-mail me your phone # at bodyworxinc@hotmail.com, I would like to talk with you in person. I won't publish your phone number, and I am the most discreet person I know. Anything you tell me in confidence, stays there. I'm not going to give you the "susie sunshine" talk either, but I do want to tell you about the people on this forum, and about the fact that they are people that you can TRUST, and that they are supportive -- you can lean on them when you need them. I know that from personal experience. I also want to talk to you about your options with regard to finding resources for help: dieticians, etc. (not psychiatrists, or anything like that -- This is in your gut, not your head!) Please e-mail me. I'd love to talk with you. Take care of yourself. . . . ((((hugs)))), Lynne

Jen -- BTW: I've done the same thing with a friend of mine -- I won't say that I gushed (well, maybe I gushed) about the people on this forum, but I was telling her that it was amazing to find such GOOD people in one place. All with very different lives, but all willing to come together to support one another. What a gift.

[num1habsfan]

Lisa, I'm concerned about you. I've said some extra prayers for you, but I really want to talk with you, if that's O.K. If you could e-mail me your phone # at bodyworxinc@hotmail.com, I would like to talk with you in person. I won't publish your phone number, and I am the most discreet person I know. Anything you tell me in confidence, stays there. I'm not going to give you the "susie sunshine" talk either, but I do want to tell you about the people on this forum, and about the fact that they are people that you can TRUST, and that they are supportive -- you can lean on them when you need them. I know that from personal experience. I also want to talk to you about your options with regard to finding resources for help: dieticians, etc. (not psychiatrists, or anything like that -- This is in your gut, not your head!) Please e-mail me. I'd love to talk with you. Take care of yourself. . . . ((((hugs)))), Lynne

Do you mean me?

~lisa~

[tiredofdoctors]

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

[Jen H]

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.