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tiredofdoctors!!!

I Hate This Disease

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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 . . . .

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Lynne, you have every right to feel this way. This disease has stolen from you and you've spent time, emotion and money trying to gain some of your health back to no avail. But I have extreme respect for you and the grace you have in dealing with this.

As you will probably remember, celiac has caused my husband to be unable to work, for many years now. He feels like his years were stolen too. His anger is repressed into depresssion and unworthiness. You both have unfair situations and I'm not going to say that stupid phrase about life giving you lemons to make lemonade (ugh! how I hate that one), because sometimes in life you don't have a "pitcher" and you miss out on the lemonade anyway. My heart hurts for both of you.

I wish I can say it'll get better in time, but I really don't know if that's true. Yes, there's always hope in something better and that's what I wish and hope for you. You know I'm on your side.

With love,

Debbie

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I'm so sorry, Lynne. I really hope you find fulfillment in whatever works out. You're a valued mamber of this site. You've made me laugh! We all are physically affected by this disease, to whatever extreme. If nothing else, it's taught me that the mind is more powerful than the body. Being able to relate to others and experience empathy and appreciate simple things is a gift that, often, the more able-bodied lack. Please try to stay hopeful and never doubt your self-worth.

(((((((HUGE HUGS!)))))))

Jo x

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Lynne,I'm so sorry you couldn't take your dream job-so frustrating for you.Life can be unfair at times and I really sympathise .

To some extent most of the time I expect you (like others)just get on with things,not focusing on the negative-and then something like this job offer brings you back to earth with a bump. <_<

As you will probably remember, celiac has caused my husband to be unable to work, for many years now. He feels like his years were stolen too. His anger is repressed into depresssion and unworthiness.

Debbie,I totally identify with you-my situation is very similar with my husband.

Yep,there are days when I HATE what this disease has done too :angry:

But there is hope,and you've got to hang on to that (I hope that doesn't sound patronizing)

Sending you all ((((((((BIG HUGS))))))))

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Debbie --your husband is sooooo lucky. Having a spouse that is supportive is really important, I think. Also, having a spouse that recognizes that this stupid disease has taken a LOT away from you. I appreciate so much, too, that you don't have the "lemonade" theory. Right now, I don't see a pitcher. At all. That is a really good analogy. Thank you.

Dave took me out "depression shopping" afterward - he knew that I just needed to get out, and get my mind on other things and off that. He let me cry for a LONG time first -- but then, after I told him that I thought I didn't contribute to our marriage, he told me that I contribute just by being here. He said that this house wouldn't be a home unless I was here, and if I never did another thing, my worth is determined merely by existing. What a guy, huh????? I know that he was sent to me for a very specific reason. He's the best man I've ever met (next to my dad -- I have to say that, because if he saw this, he'd razz me for a LONG time!!!)

I was really disappointed. I have had the "bulk mailings" recruiting for jobs, and I figure -- well, they just need someone, and they're targeting everybody. This was the first phone call from a recruiter. It was also the first time that I had to say it out loud that I can't work. God, that was tough. If I could have taken the job, our financial worries would be over for good. It was that good a position. I wanted so badly to ask, "if I'm a director, can I simply direct, and do a minimum of actual hands on work?" I could do that from a chair. I knew better, though. PT is such an active career. Those treatment tables? I would put one knee up on it, then just lift myself up on the table if I had to work over a mid-back. People used to laugh that these huge men weren't as strong as me. When I was in school, my grip strength was 120 pounds --it was 10 under the best -- a guy who was a body builder. It's down to 40 pounds. 40!!!!!!!! That's unable to open a pickle jar! Ugh.

I'm over my tirade -- for a little while. I know it will come back again when I tell my mom & dad. Especially my dad. He's the one that kills me -- he starts crying when he sees me walking, and I almost can't take it. He has to leave the room. Then he gets my mother crying, and SHE leaves the room. I guess it is hard to see your daughter like this, when I used to be so different.

Anybody else, feel free to vent . . . after all, this is an "I hate this disease" thread! . . . Hugs and love to you ALL, Lynne

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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 . . . .

Lynne you are so not the only one. I have a story very similar to yours. Celiac took away my childhood, then later I watched it take away my childrens. I had to quit a career I loved cause they told me 'Your sick because your stressed', I went back to college and had to sit by the door in every class and try to explain to my instructors that if I got up and ran it had nothing to do with them. I still got great grades and a full boat scholarship to a great school, I wanted to teach--- then I lost the ability to walk, and think, and getting to a bathroom became hit and miss (oh and it was still all in my head and another 5 years or so before I was diagnosed). My DD even told me the family would understand if I committed suicide. There are nights when I lay in bed and wonder why I am even fighting to have a life any more, I can't work I have so many off days and I am still incontinent, how do you explain that on a job application? I am afraid to go to the doctors when I am sick and scared to death that someday I may have to be hospitalized for some reason and they'll make me sicker by feeding me. I know I am not alone, there are so many of us struggling with PROBLEMS WE WOULD NOT HAVE HAD IF WE HAD BEEN PROMPLTLY AND CORRECTLY DIAGNOSED. I hate the doctors in this country and have a great distrust of the medical proffesion in general, not good I know but how could I feel otherwise. I wish you were next to me right now so we could have a hug and a good cry together, but it does help to know that you are not alone. At least a little bit.

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Ravenwoodglass: Thank you for letting me know that I'm not alone. I can't imagine watching your children having this disease, too. My biggest fear is that my kids will develop it, like I did, as adults. Especially if it affects their brains and eyes, too. I would give you a big hug and we WOULD cry together. It's not that I don't know that other people have worse things -- my God, my mother has lung cancer and finished Chemo last year. It's just that it is so interrupting in our lives. It feels like everything revolves around the disease, around the food, around the adjustments we have to make . . . how much inconvenience can one person take? Not to mention feeling like crud. I hope you start to have better and better days . . . . . (((((hugs))))to you, Lynne

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((((((((((( Hugs )))))))))))

to everyone who feels the same way. I have not been affected that drastically physically yet by the disease. I am on disability though for my bi polar and it seems like that stems directly from the disease. I get so down about feeling lousy and I dont want anyone to think I am just lazy. I finally got a job last year and thought I was well enough to keep it. That was a big mistake.

I hope you all feel better soon.

Tinker

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Ah, Tinker -- I'm so sorry. That had to be so frustrating -- getting a job, then not being able to do it. I can't imagine, and don't want to. I'm sorry you had to go through that. This disease is disgusting -- and I'm sorry you have to endure it, too. Feel better soon, and know that you are NOT lazy. (((((hugs))))), Lynne

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Ravenwoodglass: Thank you for letting me know that I'm not alone. I can't imagine watching your children having this disease, too. My biggest fear is that my kids will develop it, like I did, as adults. Especially if it affects their brains and eyes, too. I would give you a big hug and we WOULD cry together. It's not that I don't know that other people have worse things -- my God, my mother has lung cancer and finished Chemo last year. It's just that it is so interrupting in our lives. It feels like everything revolves around the disease, around the food, around the adjustments we have to make . . . how much inconvenience can one person take? Not to mention feeling like crud. I hope you start to have better and better days . . . . . (((((hugs))))to you, Lynne

Lynne the hardest part for me is the fact that I kept telling them there was something wrong with my DS from the time he was just a couple months old. By a year he had gone from the 65th percentile to the -10 and he stayed there. Then to watch both kids struggle with depression and the almost fatal (in my DD's case) progression from one psychotropic drug to another, thank God my DS refused to take them. Just thinking of all the nights listening to my DS cry and not being able to do anything to help can bring me to tears still. The worst is the knowledge that if my pediatrician had not told scare stories about GI doctors, and if she had just done a blood test my DS would be of normal height and proportion is so frustrating and sad. She is now the head of peds at my local hospital. My DS and DD both showed positive on blood tests, too bad they were not ordered until both were almost adults, far to late for my DS to ever grow, ever be able to buy a pair of pants or a shirt that fits, ever be able to ask a girl on a date and not think that the fact that he is inches shorter than her is going to keep her from saying yes. I often feel I have no right to be so angry about all this, after all there are so many in such worse positions, but then again they are not my loved ones and while I do feel great sympathy for others suffering to know that so much pain could have been avoided if only they had just done a blood test. And my DS was a 'poster child' for celiac, but they never tested. My childrens problems were because their mother was a hypochondriac that wanted to be sick. Too bad they just decided that and couldn't be bothered with actually finding the problem.

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I am so sorry for you Lynne and Tinker. I am so glad it has not gotten to that point with me. I put in for a full time position here but my fear is if I get it, will I be able to work it. I am under severe restrictions by my doctor that I can only work day shifts and not after 6 Pm because of my bipolar. Also if I work usually more than three days in a week I am so exhausted I can't see straight. That has been ever since things started really going bad eight years ago with the onslaught of pernicious anemia.

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Sometimes I wonder if they will EVER find out why I fail to heal, and if it happens to be refractory, that they come up with SOME breakthrough that will be able to reverse the damage.

I get angry sometimes too. I get angry when I am rocking in pain at 4 a.m. because of the cramping and explosive diarrhea. I am angry that it decides to be at it's worst in the middle of the night and I NEVER get a good night's sleep. I am angry that it keeps me so housebound. I am angry that every time I get intimate with my husband, I am terrified that I will have an "accident". I am angry that prednisone destroyed by body and blew me up, and in the end, didn't work anyway. I am angry that when my kids were toddlers, they used to be scared sometimes to cuddle with me because the sounds of my stomach terrified them!

Yep, this disease sucks!

Remember what I told you last night Lynne, the sky is the limit for you.......... it's a whole new ballgame and a whole different world opening up for you, you just have to figure out what direction you want to take!

Hugs.

Karen

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Hey Richard -- It's good to hear from you and see your beautiful Grace! What the doctors have told me is that the damage that is done is permanent -- and my cerebellum doesn't have an uninterrupted circuit to control the coordination of my body. All of the research has shown that, once the damage gets to this point, the goal is to live a completely gluten-free lifestyle in order to prevent further damage. It's just maintenance now. My antigliadin antibodies are almost normal now -- I don't know what they were previously, but the neuro doc said "outrageously high".

I have also been diagnosed with a Chiari Malformation -- it's a congenital birth defect -- the tonsil of my cerebellum is descending down through the foramen magnum of my skull. It's down enough to make me a surgical candidate, but the neurosurgeon is afraid that, should there be ANY complications at all, the results could be disastrous. He worked in San Fransisco when they first had the big "rush" out there because they had found the "cure" for Chiari malformations. He said that there were so many patients that had really severe post-op complications. He said that in the last two years, he's done 8 procedures, and three had post-op difficulty. One had to have surgery in the lumbar portion of her spinal cord, one had infection, and one had so much swelling, that she ended up exactly like I am right now. He said that the benefit, given the damage from the gluten, is not worth the risk of the surgery.

Nini -- thank you so much for sending that -- I did it, and I believe that some people definitely DO have the gift of healing. Funny, my patients, especially a friend of mine, told me that I have "healing hands". My best friend talks frequently about the archangel Michael.

Rusla -- thank you so much -- I know that you are struggling so much, as well. I hope that, by taking that full-time job, you'll be able to do it. You know that I'm sending thoughts to you that it will work. Do you give yourself B12 shots? I had to do that daily for 6 weeks, then every other day for 4 weeks, then once a week. I've stopped now, but am going to ask the neuro doc if I need to start back up.

Karen -- as much as I hate what this disease has done to me, I can't imagine what you go through. I've talked to you when you are on-line in the middle of the night because of your stomach. The refractory thing is so frightening. I just think the whole aspect of this disease is horrible. It's the ultimate self-hatred -- your body destroys itself. That just stinks.

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Guest nini

Lynne, I go to that site quite often and just place my hand over the image... The pain in my shoulders has decreased significantly since I began doing that. You can go back as often as you like if it gives you comfort, and who knows, maybe a miracle?

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HUGHUGHUGHUGHUGHUGHUGHUGHUGHUGHUG

I'm sorry that you have to go through that, Lynne and Tinker.

Lynne: The brain is an amazing organ, and doctors know so little about how it works. Remember my post about my grandfather? He had a series of mini-strokes after surgery. Teeny tiny bleeds, but he's basically a veggie right now. My mom called me crying yesterday afternoon, and I feared the worst, but it was because she talked to Papa on the phone! She was convinced she would never hear his voice again. He said "hi" and "I love you" to her, and at that point she broke down, and he tried to speak in sentences but his vocal cords are still too injured from the month of a tube down his throat to really understand him. THE BRAIN IS AMAZING! If it can create new pathways in an 88 year old man, it's possible for you, too. They were convinced he was totally blind (in the brain, not the eye). He can clearly see, if even only shadows, because he says he can. Miracles do happen!

And yes, this disease does suck. I'm just glad I got dx'ed fairly early on.

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I have prayers of peace and hope going out to all of you! I'm sorry that so many have gone through so much because of this disease. I'm in complete agreement with ChelsE, I thank God daily that He let my husband find out about this disease, before it was able to do the lasting harm that so many of you endure.

My complaints seem so minor compared with what you all have to deal with. Thank you for always being here to show us the way, it's all of you guys knowledge and care and concern that have gotten me to where I am.

I will pray for each and everyone of you!

Lollie

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Chelsea--that's great news on your grandpa! i'm sure that interaction meant the world...

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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.

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