What did YOU do with the grief?

[smalltownslackermom]

I'm sorry to bring up a touchy side but I would like to hear from everyone. What did you or do you do with the grief? The grief over lost opportunities or jobs or relationships because you kept getting sick? or lost years of parenting due to repeated miscarriages? or grief over the days spent doing next to nothing cause you just couldn't move? Some days it's not too bad but since my son's diagnosis, some days it it really hurts, that's all. I'm so glad we figured this out for him early on and that his generation, the cousins, all, will have a better chance of being diagnosed but I have moments of pity-party for myself, esp. after I've been glutened or am not feeling well otherwise.
I'm also concerned about my parents, who around their 80's I have asked them to get the celiac panels. If one of them is celiac (or both...), they could be facing a similar episode(s) of this feeling. Besides just solace in our respective religions, where else have you found helpful guidance through this?
My sincere thanks -
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son - high ttg - 4/09, pos. biopsy 5/09
self - negative blodwork 5/09, pos. biopsy 11/09
sister - gf for 2 years and is a new person

[Kathie]

Well now I belong to this forum, which is a great place to go when you're feeling down because you know you are surrounded by others who have experienced the same thing you have. When I was diagnosed this wasn't available.

I think you have to remember that grief is a process, whether it's a death, divorce or finding out you or someone you love has an illness the process is still basically the same. It does get better in time. That doesn't mean that after 21 years I don't still have days I feel sorry for myself, because I do, but most of the time I don't dwell on it anymore.

I think because your son has it probably makes it harder to get through the process. When our children are sick or injured we feel helpless and because this disease is genetic we may also want to blame ourselves. It's not your fault, it just is. If everyone with the potential to pass something down to their children stopped having kids eventually we would be extinct. Whether its CD, diabetes, cancer risk probably every person has the potential of something to pass along. Just remember its normal to feel the way you do.

Sometimes I just have to remind myself that there are a lot worse things I could have gotten the CD. I am glad that I have a disease I can control by diet instead of having to take a bunch of nasty medicine for the rest of my life. Some days I cry and that's ok to. When I PMS I worry that my husband is missing out on things he could do with someone without CD, but he knew I had it when he married me and he didn't care, so I shouldn't either.
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CD by Biopsy 3/25/88

[aklap]

What a great question and topic!

We've touched on this a little bit here over the years. I think it's very important to explore this, because we do go thru a grieving process and people might need help getting thru it. It's often hard to look past or beyond this big black wall you have in front of you when first starting out.

It may not be pleasant to go thru, but I think it's important to go thru the grieving process. Ignoring and stuffing those emotions inward, is not the answer - that'll do nothing but eat you alive. Not only are you working on a healthy body, but you are also working on a healthy mental/emotional state too. Since these two are closely linked, you can't ignore either of them.

How did I handle the grief [beyond my faith]?

Knowledge

I tend to throw myself into things to learn about it. When I was sick, I turned to the internet searching for answers or clues. I find that the more I know about something, the less afraid of it I become. The less afraid of it, the better I am at figuring out how to handle it.

Support

Perhaps I was lucky when I stumbled across gluten as a possibility of my problems. I happened upon a discussion board that had a few people that really helped me figure it all out and how to deal with this. I had an online support system.

Not only did I have an online support system, I was lucky enough to have a very supportive spouse, friends and family. I don't think too many people outside of Peg fully knew or understood what I was going thru.

Having a support system to help you thru those dark times is a tremendous advantage. Perhaps Peg couldn't fully understand what I was going thru [like another gluten intol might], but she was a sympathetic ear when I needed to vent, a shoulder to lean on when I wasn't sure I was doing the right thing. When I did need another gluten intols perspective, I had the online people in my corner.

Step outside

Through out the time that I was figuring out my issues, I realized that I was gaining knowledge that could be of use to others. I could take what I was learning and help others. This allowed me to step outside of myself and my own problems. This is not to say that I ignored my own emotional state, but I feel it helped me to understand & process the feelings I was having. I quickly realized that I getting an extreme buzz [an emotional boost] from helping others. I consider this aspect the most important for me. I found that my issues/situation was far from what others were experiencing. I found that I was quite lucky in the grand scheme of things. Pretty soon, things were lookin' pretty good in the ol' Al n Peg household.

Comments

Is my info/advice right or wrong? I can't say. All I can say is that it's what seemed to work for me. Hopefully you can piece together a way - your way - of effectively dealing with the emotions that you are experiencing.

Of course another option you have is seeking out professional help. There's nothing wrong with this, it's nothing to be ashamed of. If you need help, don't be afraid to seek it out.

I found some site that I thought might help. Some of the sites reference death and loss of a loved one - but I suspect there's info there that could be transfered over.

http://home.att.net/~velvet-hammer/grief.html
http://mentalhealth.samhsa.gov/publications/allpubs/ken-01-0104/
http://cmhc.utexas.edu/griefloss.html
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[HadassahSukkot]

Personally, I still struggle. Not because of the fact I was sick so long and it was explained away as "typical childhood (insert here)", or "Oh she's just exaggerating" when it came to PMS/female troubles (prior to finding the endometriosis) -- but because we had a family member die of colon cancer just this very year, that is 99% likely tied to CD, and she refused testing, to change her lifestyle or even consider such if her doctor suggested it. My aunt, who was like a 2nd mom to all of us kids.

Not to mention the other myriad of relatives showing classic celiac signs and their doctors just throwing pills at it or saying "I don't know / I think you're exaggerating" -- rather than referring them to a gastrointerologist and checking further...

Its hard when they say things like "Oh it's all in your head! I bet you think I'm ""Sick"" too!" - well, yeah, I think if you spend 50% of the time you have at home in the bathroom either trying to go, or trying NOT to go... you have a problem and are "sick".. or yeah - if you have anemia, dental enamel issues (or need of dentures prior to 30 but did everything right), bone loss, female problems AND the bowel issues....

It is hard to not be frustrated and upset at all that... knowing other people "get it" even if they don't have CD, that they see it and believe the same as you do - and your family thinks you're just making it up to "feel better" and the only thing you really need to do is "move home, you were never sick here!"

Bah! Poppycock!


For me, the more knowledge I have about CD, the more I see my family as classic and just pray ONE person who is influential MIGHT wake up, see the link, email, comment - what have you, and it 'click' and they go get tested, find out DUH they are sick, change their lifestyle around and insist everyone else get tested stat. ( I know, I know)

I guess you could say, it is a very fresh wound, because I know it is an easily fixable problem and everyone is going around their way to play "Little Dutch boy" with their health, rather than just hiring someone to sandbag while they find someone else to make a new dyke.
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[Deb]

Yup, I think we all feel sorry at times. I told a friend the other day, I wouldn't mind living with the little amount of food I can still eat, if only I felt good most the time. I'm still waiting for that day.

I also feel guilt because my daughter was born with a birth defect, and I have to wonder if I had known about celiac and been gluten free, would she not have had to deal with this her whole life. She was born without a hip socket on one side, had surgery at 2 1/2 yrs old, and has problems to this day. She will be 27 in Oct. and often has spasms in her hips, has back pains, and herself, has got to deal with the fact that she needs to be gluten free. I know it wasn't my fault, but it still breaks my heart.

The worst time of year for me is the holidays, Thanksgiving and Christmas. All the wonderful looking food on commercials on tv.
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You can't discover new oceans unless you have the courage to lose sight of the shore!

[ostrich]

Obligatory Futurama quote:

[Fifi]

I totally agree Os no one here understands how bad I want a hamburger or a sub. We are overwhelmed with commercials of food we can't have. We go to parties were often there isn't much we can eat and we explain it off as "no thank you I'm not really hungry" rather than go ino the whole story over again. My family is getting better at having food I can eat, but they still don't understand it. We just never talk about it. Mom has Cancer we all understand that so we can talk about that. I always feel like the outsider. " Lets go out to dinner oh Rosanne, can you eat anything here?" This forum is the only place I can talk to people and they know exactly what I am talking about. This forum has really saved me many times.
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GF BD 1/4/2008
Rosanne

[Mom2BoyzOnly]

Most of the time I am able to keep the "grief genie" contained in his bottle. But there are still times, especially when I'm tired or very hungry, that he escapes. I remember when my MIL was in the hospital and I was exhausted from going every day and my DH and I went to the cafeteria and I saw nothing I could eat. I went into tears b/c I thought I should surely be able to find something in a hospital cafeteria! Also, really miss the convenience of being able to pull in anywhere to eat.
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Robin
Diagnosed approx 13 yrs ago
Seriously GF past 4 yrs

[smalltownslackermom]

Os, you're right. I should just pop in a FUturama or Venture Bros and gel-out till the sorrow passes
"The big brain am winning! I am the greetest! Mwa-ha-ha-ha! I must now leave Earth for no raisin! "
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative blodwork 5/09, pos. biopsy 11/09
sister - gf for 2 years and is a new person

[motoadve]

I Was devastated , I was diagnosed 6 months ago.
My mind was always thinking about the desease.Always non stop !!
I had Marsh 3, felt weak.

Im big in to sport , mostly extreme, and my performance was getting worse, because I was weak.

I continued with my sports, started super strict diet, but continue thinking of Celiac desease all the time like an obsesion.

In my case this is what totally took it out of my mind, I started to learn to fly, always liked planes, and took flying, Im studying enjoying and maybe during the whole week the only time I spend thinking about celiac desease is when explaining to people.

My diest is super strict and sports are good now

Got my results of my last revision and I went down from Marsh 3 to Marsh 1 in just 6 months.Dr say apart from the diet, sports helps a lot.

My advice ?
Do something you always wanted to do , and dont think it twice, you need something NEW and exciting in your life.
New hobby, sport career, boyfriend something new or you will continue suffering