Grieving

[tarnalberry]

It's in human nature to grieve a loss - any loss, regardless of whether it's "less of a loss" than some other kind of loss. It's even in human nature to grieve a loss that actually benefits us, because it's simply a loss, and a change.

If the change in diet is the biggest loss in our life, then it's the one we're going to grieve most. It's not trite for it to be the biggest grief in our life, because this sort of thing is relative - it's the *whatever*-est we're dealing with in our life. Of course, if the dietary change is the biggest grief in your life, there's also value at reflecting on and appreciating that there isn't a bigger grief in your life. It doesn't demean anyone else's grief over anything in their lives, because it depends on your individual circumstances.

I do think it's important, however, to separate what you are grieving. If you have to change your diet because you have Celiac, and you got so sick while you were undiagnosed that you lost your job, grieving over the dietary change should be small beans compared to grieving over the lost job. (Though, then you consider the fact that you can change your unemployed status, you can't change the diet...) The only point I'm trying to make is that they're separate, and bundling all the related, but separate, griefs together just makes it harder to untangle the mess and move on.

[jknnej]

That is pretty much what I meant, Tiffany. You found a better way to say it!

[kevsmom]

I am definitely going through a grieving process. I passed up on going to a Christmas party last night because of the food that was going to be there.

People at work bring in homemade baked goods and put them out in a central location. (Goodies are brought in at different times during the year, but right now I am extremely vulnerable). I have actually left the area very upset because there are cookies or cranberry bread that I can't have. I have brought in some gluten-free goodies that I keep in my desk to eat during these times to try to make myself feel better, but it's not the same.

I guess I'll learn to get over it.

Cindy

[frustratedneicey]

All that I want to add is that my doctor told me that it is normal to feel a loss when you have a change in your health or changes due to this type of condition. He said grieving is a normal , human process. No one should be made to feel guilt for a normal human reaction to a drastic change of life. Thats all....

[jknnej]

I wasn't trying to make anyone feel guilty I was simply stating my opinion on how I handle it.

I teach high school and we have goodies week where everyone brings goodies, plus donuts in the office every Friday, plus countless parties because I teach choir. Oh and not to mention the luncheons about 4 times a year. No one EVER brings gluten free food to those things, but I don't get upset over it. To me, it's just pointless and I have better things to worry about.

That doesn't mean I don't respect your right to feel upset; I am simply stating that to me it is not the way I deal with things. The one time I did say something to someone at the luncheon they pretty much laughed at me. At first I was offended but then I realized, they're right. It's just food. Now I bring my own cookies and gluten-free snacks and sit and talk and laugh witb everyone else.

I'm not saying you should react the same as I. I'm just saying that I react differently.

Actually, every time we have goodies week or a luncheon I sit and think about all of the calories everyone else is eating while I am being good. It usually makes THEM feel bad for consuming so much! Talk about turning the tables!!

[Rachel--24]

I teach high school and we have goodies week where everyone brings goodies, plus donuts in the office every Friday, plus countless parties because I teach choir. Oh and not to mention the luncheons about 4 times a year. No one EVER brings gluten free food to those things, but I don't get upset over it. To me, it's just pointless and I have better things to worry about.

This is pretty much the same way I feel about it. I handle it the same as you but I recognize that to others its a bigger deal. I work in a grocery store so I'm looking at gluten all day long and handling all the foods I cant eat anymore. It really doesnt phase me that much. We have pot lucks and bbq's at work and they always ask me what they can get for me...is there anything I can eat? I always tell them not to bother. If I want something I can bring it from home...I dont need people to go out of their way because I have a "special" diet. I feel I'm responsible for my diet...noone else. It's nice that they ask though.

When I was sick and undiagnosed I worried about my finances, losing my house, would I ever be able to work again, would the doctors figure things out, would I die...stuff like that. The diet change is not my main focus right now. Rebuilding my life is first priority and everything seems to be falling into place as far as that goes. I guess if all I had to worry about is what I cant eat I'd probably be alot better off in every other area but in a way I'm glad I've learned how BAD things can get. Now I'm more grateful for the little things and dont sweat the stuff that I cant change.

[ms-sillyak-screwed]

Hi Celiac cyberspace friends!

Grieving is many things for many people. Love, compassion, guidance and understanding does help me, although they are very hard to find (except here) thanx!

The grocery store has become a quick visit 1-2-3. I don't look around at what I can't eat. As I write this, it dawns on me, all of you have a family, boyfriend, girlfriend or kids that you shop for or with. I'm not that lucky. I'm alone.

As I reflect, and read jerseyangel and how she withdrew. I wonder if that’s the real reason I'm alone? I'm a super outgoing, free spirited fun-loving soul and for my entire life, up until 5-years ago when I got this frightful disease, I was the most opti•mistic person you'd meet. Not now! I'm no longer and optimist, when they say pessimist I correct them. I'm a realist. –

jerseyangel is right when she said it was easier that way, how she withdrew. And maybe that is what I have done too? I make excuses not to go through the embarrassment of ‘going out’ ordering, them getting it wrong, watching others eating, then explaining why. You all know what I mean… It kills the mood when you are on a date, forget about a relationship or finding a hubby.

I did read a few different posts about all sorts of LOSS. I’m honestly sorry for your loss too. I know ALL of them well... All alone I made a life altering choice. Open Original Shared Link I miss her. I understand grief and loss. I know what it is like to loose it all – a multi millionaire one day and homeless the next. If I had millions again, all my money wouldn’t help me now, there is no cure! I know what it's like to be in the wrath of a cat 3 hurricane, worrying how to survive without safe food and loss. Loosing material things can be earth shattering believe me. But there is something much different about the loss associated with FOOD.

We need food to survive as humans.

I have since developed many food allergies other then gluten and dairy. Maybe I’m a non-responsive celiac?! It frightens me to die like Auntie. I’ve let go a long time ago of the things I no longer have, now I have will power. But I think out loud here, how will I survive with the few things I can eat?

-- Jknnej -- I just had my birthday. Ha! Did you say “Of course we can have birthday cake.” or something about you are making me a birthday cake? Well, thank you -- I can’t eat dairy, corn, rice, potato, eggs, nuts, gluten, and too much to clog this post with. I get seizures. So what kind of Birthday Cake can I eat? Tell me! I [don’t] have plenty of food choices. Think of your friend and friends here [open your heart] to others who need to grieve!

Frustratedneicey – I noticed you are a newbie. I’m glad you are here. Please come back anytime, you are welcome to vent your grief, you are very normal to feel the way you do.

[Claire]

Hi Celiac cyberspace friends!

Grieving is many things for many people. Love, compassion, guidance and understanding does help me, although they are very hard to find (except here) thanx!

The grocery store has become a quick visit 1-2-3. I don't look around at what I can't eat. As I write this, it dawns on me, all of you have a family, boyfriend, girlfriend or kids that you shop for or with. I'm not that lucky. I'm alone.

As I reflect, and read jerseyangel and how she withdrew. I wonder if that’s the real reason I'm alone? I'm a super outgoing, free spirited fun-loving soul and for my entire life, up until 5-years ago when I got this frightful disease, I was the most opti•mistic person you'd meet. Not now! I'm no longer and optimist, when they say pessimist I correct them. I'm a realist. –

jerseyangel is right when she said it was easier that way, how she withdrew. And maybe that is what I have done too? I make excuses not to go through the embarrassment of ‘going out’ ordering, them getting it wrong, watching others eating, then explaining why. You all know what I mean… It kills the mood when you are on a date, forget about a relationship or finding a hubby.

I did read a few different posts about all sorts of LOSS. I’m honestly sorry for your loss too. I know ALL of them well... All alone I made a life altering choice. Open Original Shared Link I miss her. I understand grief and loss. I know what it is like to loose it all – a multi millionaire one day and homeless the next. If I had millions again, all my money wouldn’t help me now, there is no cure! I know what it's like to be in the wrath of a cat 3 hurricane, worrying how to survive without safe food and loss. Loosing material things can be earth shattering believe me. But there is something much different about the loss associated with FOOD.

We need food to survive as humans.

I have since developed many food allergies other then gluten and dairy. Maybe I’m a non-responsive celiac?! It frightens me to die like Auntie. I’ve let go a long time ago of the things I no longer have, now I have will power. But I think out loud here, how will I survive with the few things I can eat?

-- Jknnej -- I just had my birthday. Ha! Did you say “Of course we can have birthday cake.” or something about you are making me a birthday cake? Well, thank you -- I can’t eat dairy, corn, rice, potato, eggs, nuts, gluten, and too much to clog this post with. I get seizures. So what kind of Birthday Cake can I eat? Tell me! I [don’t] have plenty of food choices. Think of your friend and friends here [open your heart] to others who need to grieve!

Frustratedneicey – I noticed you are a newbie. I’m glad you are here. Please come back anytime, you are welcome to vent your grief, you are very normal to feel the way you do.

Well, I am still human and I have faced all this for the past 15 years. I have a reactive food list that I imagine is at least as long as yours'. I have survived very well thank you and doctors are amazed that I do not take any medicines. Obviously my restrictions not only have not killed me - I am no doubt healthier than I would have been without them. Do I miss any foods? Certainly. Oh for a good scone! But my good health is far more important to me that whether or not I can indulge in all the very unhealthy food that makes up the bulk of the American diet.

Today I went out to Harry & David's to buy Truffles - and not for me. The smell of that store is so delectable and there were these great looking Toffee Doodles - a luncheon plate size cookies that looked and smelled wonderful. I am way past temptation yet, for just a moment, I wished . . . I left the store and never thought about it again until just now.

Because grains but not specifically gluten were identified as reactive foods, I continued to get some gluten during most of these 15 years. I now have serious neurological problems that I might not have had it not been for the gluten. I would have given up anything to avoid the neurological issues I now face.

The way you are describing your condition, it sounds like you need some much more in depth diagnosis.

Gluten can produce seizures in some people but it would be most rare for the other foods you name to do so. Seizures might warrant further investigation.

Also. once the gut is healed, you may find you are less reactive to foods than you are now.

This is a process. It cannot be rushed. The more you stress out the longer your healing will take.

I am sure all of us on this forum will help you in any way we can - but in the final analysis, it is up to you. Claire

[pokerprincess]

I know it is hard to change your life but I think we need to put things into perspective. Although what we're going through it not easy, try to think of how trite changing your diet is compared to children in the hospital who have cancer, or people like my close friend, whose son just passed away.

There are plenty of great gluten-free foods for us. Of course we can have birthday cake. Just make your own gluten-free birthday cake. We can still eat out, we can still have all kinds of sweets, and life isn't ending.

I guess because of the death of a close friend I am feeling a little unsympathetic toward grieving for food. Right now for me there are many more important issues I"m thinking about, like my friend being totally alone without her son.

I hope I don't seem too apathetic; but come on, people, let's learn to be appreciative of what we do have and not mourn for something like food.

Know what I did to make me feel better? I went out and bought gifts for needy children for the Salvation Army Christmas Angel program. I guarantee that will make you feel better than any bowl of pasta ever could.

I completely agree! this sucks and sometimes I think I could go without limbs easier but realistically, we are lucky. I am so glad I can be well! Unfortunately, unlike a lot of third world or even European countries we put to much emphasis on food. It is the common ground that we all find comfort in. We get to be a little more in depth because we can't hide behind cuisine! that means actually having a conversation that has some meaning to it. Actually being interested in the company we are entertaining! We are ahead of of the rest of the world in a sense that we may have a deeper appreciation of things!

I also had a friend who died. She had over come alcholism, had always been a little over weight, and just before she turned 40 she got serious about her health. She died in her sleep from an anurism. (spelling?) She left 3 children. In essence; it was food that killed her.

Thank you for reminding us and grounding us to what is important.

p.p.

[pokerprincess]

This was on a link on our forum. It will make you cry and make you thankful. She was one of the most beautiful of children I think I have ever seen.

Caylee's Life and Death

Caylee was 4 years old when she passed and was completely full of life. She loved any kind of animal, was nice to everyone, gave besitos to all of her family, played with her brother and sister, gave hugs and valentines to mommy, entertained me, danced with me, shopped with me, fished with papa, did back bends with papa, flips with papa and hide and seek in the house.

There was never a bad moment, never a bad memory, except the one where she died.

I loved Caylee so very much and did as much as I could for her always. Caylee comes from the word Katherine, which means - PURE. --- and she sure was. A fragile, graceful, loving child who cared so much for others that she would forget about the things a child should care about.

Anyone that met her or saw her felt all of the love that Caylee had bottled up inside that little body and desired so much to share that with her.

We will all miss Caylee and will meet her again when it is our time to be with her.

Caylee was not sick prior to those two weeks. All of my children had an upper respitory infection and had been to the doctor's the week prior and put on Zithromax. She was over the cough and on day 7 of the Zithromax, she got a low grade fever. She was still playing and acting like a healthy kid. That was March 3rd. We had been for a field trip to the Fire Station the day before. On March 4th, she had some vomiting. Immediately, I thought stomach virus. The next day, the 5th, I took her to Healthpoint After Hours Pediatrics and they diagnosed her with a Stomach Virus. I took her home, let her sleep the next day and Monday, the 7th, when she looked worse, I took her to her Pediatrician. He immediately diagnosed it as Leukemia. We were devastated. He told us this is not a death sentence like it used to be. We took her to the Children's Cancer Center and they aspirated blood from her marrow and diagnosed early as ALL with a 80% chance of survival. The next morning the final results came in and it was not ALL, but AML and now the prognosis was 40% with Chemo. My whole world seemed to end at that moment.

The Oncologist gave us her road map and said it would mean 10 days of Chemo and then more treatments lasting 2 1/2 years and then she may not recover and may need a bone marrow transplant and then still could relapse and eventually die.

I asked if she would walk out of there now and he was certain she would. With 20 years + of experience, they had never seen or expected anything like this.

Her WBC was 283,000 and when they started pheresis it came down momentarily and then went back up while they were treating. This baffled them.

They told me after they had to put a ventilator in that she probably was not going to make it through the night and that the had to resuscitate her.

I told them to keep trying. I did not want to fail her in any way. The Father from church was there and he said, "The last bit of love you can give her is to let her go." I knew he was right when the 7+ bags of blood they were trying to get in her started coming back out.

She was bleeding to death, so I had to make a decision to let her go before she did. The Hematologists said that would be far worse if that happened. I could not bare to do that to her.

So, I told them to disconnect her and give her to me. I held her for a long time. I touched her little feet and hands and rubbed her tummy that had hurt so much and kissed her. I told her that I was so sorry that this happened to her and that I loved being her mommy and that I was lucky to have had that opportunity.

In November, her class made cards for Thanksgiving. Hers said she wanted to thank Papa for taking her fishing, mommy for buying her things and Jesus for giving her TV.

The last thing she said was, "Papa, I want to watch TV." I want to think that Jesus or an Angel was standing there telling her whenever she was ready to go home just say it. I think it was her way of saying to us she was ready. She closed her eyes and did not open them or speak again. I truly believe she was already gone

[key]

Definitely the most depressing part for me is not being able to eat out at a restaurant anymore or just go to someone's house without being a nuisance, as I feel I am! Also having people not really believe that this disease is real. Also trying to stay gluten free in a house full of gluten. THat right there is probably the most annoying part. I don't know how long the grieving lasts. I was excited to figure out why I felt so bad. I started feeling better right away and that was great. THen six months later, well I feel bad again. I am hoping now that I am being even more careful that I will feel better. Ok, sorry I am complaining and whining! I do get tired of cooking constantly and cooking two meals. ONe for my son and I and one for the rest of my family. Lately I have been down about what I can eat and skip meals. Anyone else do this. I am just sick of all the stuff I eat. I know it will get better. I am finally going to start cooking again. I have been on strike for about a month now.

Monica

[jknnej]

I suppose part of my nonchalance about food comes from my being a little religious as well. I don't go to church every Sunday and I'm not extremely religious, but I do believe in God and Jesus and after being reminded of His ultimate sacrifice it makes me feel very small to worry so much about food.

I read the posts about lost loved ones and empathize and sympathize as I just lost someone myself. And that is my point entirely; the grief over the loved ones is far greater than grieving over food for ME personally. That doesn't mean I don't respect other views; I do!!!! But to me food is such a small part of life. That's all I was trying to say. Of course people have the right to grieve over anything they wish!

[Rusla]

I am definitely going through a grieving process. I passed up on going to a Christmas party last night because of the food that was going to be there.

People at work bring in homemade baked goods and put them out in a central location. (Goodies are brought in at different times during the year, but right now I am extremely vulnerable). I have actually left the area very upset because there are cookies or cranberry bread that I can't have. I have brought in some gluten-free goodies that I keep in my desk to eat during these times to try to make myself feel better, but it's not the same.

I guess I'll learn to get over it.

Cindy

Cindy,

We had our Yule party on Saturday and a restaurant,my work mates checked it out ahead of time for me to make sure they could do a gluten/wheat-free meal for me. It was a big success. I couldn't eat the desserts but when I looked at the pies, cakes, and cheese cake I knew I could make them gluten-free. So, I was happy because I have really not lost anything, I have gained a new perspective on things and I am losing weight on top of it all.

At work once every month we have "food day" everyone brings a dish to eat and now everyone labels what is in the food and we have separate utensils for each food. Of course what I bring is glute-free and I know at least there is at least one food there I can eat. However, many bring in vegetable dishes etc. We also have two vegans at work.

When I am in Safeway's I smell the food from the bakery and I think about how good it tasted, then I think about how I suffered and to me it is a no brainer. I really don't like nor do I need to suffer more. So for me the choices are easy.

I will not stand and look at something I cannot eat, and I have trained myself that lamenting over it is fruitless because I will not touch it or give it a second thought.

Key,

Why not cook the same meal for the whole family instead of two different one. The reason outside of the hassle is then your son will feel part of the family and not excluded. Maybe make it easier on all yourselves when you go out and all order gluten-free meals. If it is good enough for your son, then it is good enough for all of you. Not only that but one does not know what the future may hold for any one of you and at any time another family member may have to go gluten-free. This is just a suggestion that may make things simpler.

Jknnej,

I was not saying you are telling people how to grieve and over what. All I was saying is that people grieve over everything and in different ways. For some people, this may be the most terrible thing they have had or have at this time to grieve over. There are some people who try to tell people what and how they should be grieving.

I, like yourself, process things differently. I know there are worse things in life for me to grieve over. I have been through them, this is a walk in the park for me. I also realize this is tough on many because they are cooking different meals for the rest of the family because they feel they are not being fair making the family eat what they have to eat. But the thing is if the don't tell the family they are all eating gluten-free they will never know they are eating gluten-free. I live alone and I know that makes this considerably easier.

I view things in a different perspective than most people because I have been in medical life-threatening positions more than once. I have also had other more important things for *me* to grieve over. Not that others thought they were important. I also realize that after major extreme surgery when most are moaning I am cracking jokes with the nurses because if I had ever concentrated on what the end result could have been and was supposed to be, I would have been in tears. I have had a loaded shotgun held to my head and I came out on top. So for me, this is nothing. Yet someone else may think that this disease is more traumatic than having a loaded gun held to your head.

I also focus on this is certainly not the worst thing in my life at this moment. But for others it could be and that some people trivialize other people's grief because it does not fit their thought pattern and some will try to tell others what they should be feeling.

I am also not saying, in some small ways at some points I have not grieved certain foods I But who knows tomorrow I may sit and cry all day over cake.

[Claire]

I don't imagine my experience will help those who grieve the loss of food so deeply but for what it's worth here goes.

For many years I was (in error) on a restricted gluten diet. I sometimes ate small amounts of non-gluten-free stuff - cookies, scones, a piece of pie - usually things that didn't have yeast. Because it was a sometimes thing I found that when I did eat such things they were far less pleasing than I anticipated. I must exclude scones from that statement. I really did loss the taste for really sweet things - a piece of cake was almost sickening.

It is like being on limited salt. You get to where salty things taste dreadful. We are conditioned by what we eat. When we change what we eat we recondition ourselves so that eventually the things we once craved lose their appeal. Unfortunately it doesn't happen overnight but it does happen.

Without being too critical of the those who grieve so much, it does seem a shame to complicate your life, stress your mind and body as much or more than celiac itself is already doing. Your body doesn't need this extra stress. It is the enemy of your healing.

Go online and find a good recipe for flourless chocolate cake. Then find a recipe for a good gluten-free chocolate sauce. Warm your piece of cake in the microwave and drizzle with warm chocolate sauce. This is definitely a stress reliever and a comfort food you will definitely have more than once. Claire

[Mango04]

jknnej - I think it's really awesome that you decided to help out with the Christmas Angel program. I agree that whenever it seems like my situation is horrible and helpless, there is ALWAYS someone who is worse off, and reaching out to help can really put things in perspective and spread a lot of positive energy.

I am gluten, dairy and soy free. For me, I've reached a point where foods containing those ingredients just don't appeal to me at all, but I know it takes a long while to reach that point. I'm just so grateful that because of giving up certain foods, I've gained so much more (the opportunity to live a healthy life!)

A television show last night did a whole segment on children who are fatally allergic to sunlight. These kids cannot go outside at all and have to walk around wearing really frightening looking protective gear that covers their entire bodies. They also have to walk around with light meters beacuse even when they are inside certain types of light can severley harm them. I had been frustrated yesterday due to some reactions I had been getting from people about the way I eat, but that sure put things in perspective for me. As hard as these dietary restrictions can be, atleast I can go outside and enjoy sunlight!

[jerseyangel]

Mango04--Welcome to the group! My husband and I saw Extreme Makeover last night, too. I felt the same way about the kids being so much worse off than I. I was struck by their attitudes--some were so young but they seemed to understand what they were dealing with, what they had to do to live with it and at the same time, became just "a bunch of kids at Disney" and had a great time while there. (in the middle of the night) I'd been feeling sorry for myself after a gluten accident that is lingering on a bit, but that put things back in prespective.