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Celiac Cost Me Everything


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109 replies to this topic

#31 Jestgar

 
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Posted 22 August 2011 - 12:44 PM

There was a piece on NPR about a local politician who was born to a native american woman, but adopted by a white family. She went through some very difficult times, and somehow ended up in front of the tribal council after her dad died (mom was already gone). She apologized for coming to them and said something about not having a family. The tribal elder said "you don't need a family, you have a tribe".

That's kinda what I feel like this group is. A group of people you were born into, some better, some worse, but all connected. So don't worry when you feel alone, or your family isn't supportive, or you need to grieve with people who will grieve with you. You don't need a family, you have us, you have your tribe.
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#32 oceangirl

 
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Posted 22 August 2011 - 02:22 PM

Raven,
I really like what Jestgar said about "tribe"; I do feel here on the Earth Plane or the "Pain Plane' as I sometimes refer to it, we all have family and "chosen" family- those who we just feel more comfortable with and at home with. I come from a huge French and Greek family and there is a ton of love but with SOME, not always true understanding and compassion. My own kids (21 and 18) I know love me to pieces but can at times sound "hard" with me or act selfishly but I do realize that's where they're at right now. I think what you are experiencing with older kids seems much more difficult and painful and I wonder what unsolved issues they have that most likely have absolutely nothing to do with you yet you still bear the brunt of their long hurts or frustrations or missed opportunities... not fair, but common.

It's nice to read so many caring people's comments to you though I know it won't bring your beloved dog back. I just have to say, having buried so many of my beloved companions, I really didn't think I would get another cat after Sam died in February. (I had 7 at the time...plus 3 dogs and a rabbit) But, through a ridiculous chain of events that if one were to put in a novel (unless it was written by Gabriel Garcia Marquez...) no one would even believe, we met "Marvin", a foolish one-year old male tiger cat who has been slowly and entertainingly healing our household. I am sure Sam sent him.

Absolutely every one of my over 30 animals, with the exception of one little tiger cat back in the day, came from the shelter. They are the animals to get, I think. Or a few just found their way to our house, like some sort of 101 Dalmation circuitous calling chain... I don't know.....

Anyway, sorry, this is way too long; I just think opening your heart to the eventual possibility of another dog would be a good idea. And see what the universe then brings.

With kindness,
lisa
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#33 SarahJimMarcy

 
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Posted 22 August 2011 - 03:16 PM

I would love to see a picture of Pooh, if possible. We are all sending the best to you and him. I've been thinking about you all day and hope tomorrow is better. So sad for you!
  • 1
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#34 Jenny (AZ via TX)

 
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Posted 22 August 2011 - 04:56 PM

Ravenwood, I'm so sorry about the loss of your beloved Pooh. It is so hard to lose a good friend. As many people have already stated, there are all different kinds of friends. You have so many on this board alone. And, you have been a great friend to more people than you can imagine. It's not just the posters, but the lurkers too that have benefited from your advice. You are always kind and gentle in your responses and so many people appreciate you.

I will say some prayers for you and send some positive thoughts your way.
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Jenny
(Texas girl in AZ)

Diag: 2/2008
Bloodwork - positive, 2/19/08
Biopsy - positive, 2/26/08
Colonoscopy - clean as a whistle!, 2/27/08

#35 zus888

 
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Posted 22 August 2011 - 05:42 PM

Hi Raven,

I am so sad and heartbroken to hear of your recent trials and feeling like you are all alone. I know how difficult it must be to lose a furry companion - one who saw you through thick and thin. Some day you will be able to be happy to have had him in your life, instead of sad that he had to leave. But...it will take time. I know it took me a long time to open my heart again, knowing that I would likely be left behind again and having to say goodbye. In the end, however, having them in your life is worth the pain you must face when they leave it. I'm so glad that you both had each other because I am certain that he was just as grateful to have had you as your were to have had him. Hugs, dear!

As to your family, I'm so sorry that your children are being so self-centered. Unfortunately, that seems to be the way things are nowadays. I don't know how old they are, but I know in my 20s, I was very self-absorbed and now, with kids, it hasn't gotten much better. :(

Last, I read a saying much like the one that you just posted. When I read it, it spoke to me in a way that changed my attitude. I'll give you a tiny bit of background: I was diagnosed with an incurable liver disease about 4 years ago. The statistics aren't good and the only real "treatment" is a liver transplant, but you have to be on your deathbed in order to get one. And there is a likelihood of the disease attacking the new liver as well. Even with the transplant, the statistics aren't comforting. So, on the PSC board, someone wrote, "I'd rather die living my life than live my life waiting to die." I had been going through a lot of emotions after my diagnosis and that was exactly what I needed to read at that time. And, I've chosen to live my life with that one statement in mind. I don't always succeed, but mostly I'm doing a pretty good job. That isn't to say that I don't get down or scared or defeated, because I do, but eventually, I pull up my bootstraps and decide to ignore the statistics and work my way on being an outlier. I hope you can find the strength to do the same. We only get ONE CHANCE at this life. You've been given a new life with a gluten-free diet. You CAN focus on the fact that so much time was wasted, OR you can focus on the fact that you've been given a new lease on life. You can choose to take it and run with it. What is done, is done. There is nothing you can do to change your past, but you CAN change your future and how you live it!! YOU have done just that for so many others here on this board, and I hope it's a gift that you can give yourself. You deserve it. And Only You can make the choice to do it.

I want to thank you for being such an inspiration to me and always offering support here. Yes, so many of us DO care about you. But what you should also be seeing is not only do we care, but YOU MATTER. YOU MAKE A DIFFERENCE IN THE LIVES OF OTHERS FOR THE BETTER!!! That's all many of us ever want. Is to know that it MATTERED that we ever lived. That we made the world or someone's life just a little bit better. And you can see a testament to the difference you've made right here in this thread!

Much love and hugs!
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Suzanna

#36 kwylee

 
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Posted 23 August 2011 - 03:58 AM

So sad to hear about your little friend's passing.

You remind me that I spent years as a younger person glossing over my mom's "mystery" symptoms, I guess since the doctor couldn't find anything wrong with her I just didn't take it as seriously as it was. I'm sure we weren't there for her when it really mattered. How wrong we all were, and I feel badly that I didn't get a chance to tell her that I understand.

So I'm telling you. I understand all of it, and I'm so sorry.
  • 1
K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#37 ravenwoodglass

 
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Posted 23 August 2011 - 05:23 AM

You remind me that I spent years as a younger person glossing over my mom's "mystery" symptoms, I guess since the doctor couldn't find anything wrong with her I just didn't take it as seriously as it was. I'm sure we weren't there for her when it really mattered. How wrong we all were, and I feel badly that I didn't get a chance to tell her that I understand.


Me too. For years I pushed my Mom to go back to working as a secretary instead of doing housekeeping and taking in ironing. It wasn't until I was unable to do anything without a bathroom close by and lived in constant pain that I understood. I know my kids love me. They just don't understand how much I need to hear from them and likely won't until I am gone and they have children of their own.

I'm feeling a bit better today but still have to go through the cabinet and pull out his unused food to take to a shelter or my local food bank. I have a gift certificate for a picture framing and I am taking my favorite picture of him and a lock of his hair in this morning to be framed. It is the picture I posted. Still can't move his pillow from beside my bed though....
While I wish I could have found a job sooner in a way I am glad I haven't as I don't think I could deal with it right now. I have my volunteer work later this week though to keep me busy and by then I should be able to face the world without crying. Taking my little guy for walks at the lake gave me the strength to leave the house and fight the agoraphobia and I am going to fight like hell not to backslide. He was my comfort and my best friend in a way that I think only dog lovers can understand. And to say my kids are not dog lovers is an understatement.
Thank you everyone for your support. It does help more than you know. I know he will be waiting for me to join him and many other of my past loves someday. He will be the one running the fastest across the Rainbow Bridge.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#38 SarahJimMarcy

 
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Posted 23 August 2011 - 07:12 AM

Just wanted to check in on you today and still sending positive energy your way.
  • 0
Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#39 a1956chill

 
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Posted 23 August 2011 - 10:02 AM

Raven,
Thank you for posting the picture of pooh :) Oh My Goodness, what a SWEET baby :wub:
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#40 yolo

 
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Posted 23 August 2011 - 10:19 AM

I agree-a beautiful dog Pooh was! He'll always be there in your heart. He's still with you in ways that count.
He just might also encourage you to find room in your heart for a new companion later on down the road. You will know when the time is right. For now its appropriate to mourn and be glad his big spirit shared his time with you.

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#41 a1956chill

 
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Posted 23 August 2011 - 11:08 AM

While I understand and respect the suggestion of (after a period of grieving ) adopting another dog I also feel that in my case that will not happen.

My BEST buddy Gabe is 11 and has health issues. MY heart breaks just thinking about the day I will lose him.I have decided that once he is gone I will not have another dog.I have kittys and while not the same they will help.


I am 54 years old and have health issues. I do not feel that with my life issues (housing,work,health ect..)it would be fair to bring another dog into my life .
I will treasure every moment I have with Gabe but he is the last dog I will have. That saddens me to say that because He has brought so much joy and love to my life but I feel that is the responsible thing for me to do at this point of my life .
  • 1

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#42 bonnie blue

 
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Posted 23 August 2011 - 11:22 AM

Ravenwood, I just got on and saw your post about your beloved friend Pooh, I am sending you out a big hug, and I will be thinking about you. I agree with the other posts that said you are always there for others here sending out wonderful advice and words of encouragement, I know I am very thankful for all you give to myself and others. My sympathies go out to you, I also have two little dogs who have always been there for me, on my good days they dance and play with me and on my bad days they snuggle and care for me. Thinking about you and sending out good thoughts, take care my friend.
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Just takin it one day at a time :)

#43 GFinDC

 
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Posted 23 August 2011 - 07:02 PM

Sorry to hear about your loss Ravenwood. Dogs are great companions, they have such fun doing simple things. Chewing your shoes, biting the mailman, chasing cars, barking at the moon! Woofing at the neighbors and anyone who dares to knock on the door. Helping the cats eat their dinner, cleaning up spills and dropped food bits, running in circles, shedding fur, laying in your lap, eating furniture, fetching sticks (the smarter ones), and licking your hand. What's not to like? :) Kids aren't good for many of those things. I hope you feel better thinking about the fun things your pup liked to do. Sounds to me like he had a good life and a loving mom to take care of him.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#44 catsmeow

 
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Posted 23 August 2011 - 08:14 PM

I'm your friend. I remember some long emails that went back and forth between us when I was a newbie. You helped me so much. You are an amazing and intelligent women. Thank you for helping me back then, I'm here for you. You know, my sis remembers you from several years ago. You helped her as a newbie as well. (((((((hugs)))). You are important and valued to us on this forum. Sending love your way. :wub:

P.S. So sorry about your little doggie.
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You've cat to be kitten me right meow

Wheat Allergy-April 2010
Gluten Intolerant-April 2010
Dairy/casien intolerant-Aug 2012
Lactose intolerant- Aug 2012
Soy Intolerant-November 2012
October 2012- I learned that I am 1/2 Irish with a strong family history of Gluten Intolerance/Celiacs. I will never know If I am Celiac because I will never eat gluten again in order to test postive, it's poison and I do not ever want to feel the way I felt before implementing the gluten free diet EVER again!!!

#45 AVR1962

 
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Posted 23 August 2011 - 11:24 PM

I so do understand. My real hard symptoms didn't appear until 2 years ago and I still didn't know my problem but I would say I have had it for years and I think the one thing I can reflect on is how exhausted, overwhelmed, and while trying to be the patient caring one I was fighting a terrible irritability inside myself trying to raise 5 kids with little input from my husband. There were days I just would lose it and I would feel so bad. 4 of my adult children are adults now and trying to find themselves in their own adult world. I realize the 20's are a tough learning time as I was once in their shoes but I hope I was never as disrespectful to my parents have my children have been towards us, me especially. It does break my heart so I know what you mean when you say you call and there is no answer. I don't get a reply to my emails nor do I get thank yous for gifts I send.

My problems with gluten took a real ugly stand in my life this past Feb....I was lready stressed and had been stressed for quite some time, my grandfather had died which brought out some real weird issues with my family. I got so so sick I was hardly functioning. I was making it thru the days and trying not to burden my family but I really felt I was sinking. I felt I was driving my husband nuts and my mom told me if I wouldn't obsess I would be fine. My friends couldn't understand because they had not even heard of celiac before and could not relate to what I was delaing with. I felt very alone, and like you I felt all I had was my career (I work with kids and being in their innocense some days was the only joyful part of my day) and my animals who were always happy to see me.

I ended up seeking a counselor to help me thru. There was alot going on but I really needed someone to talk about my health with, someone I felt would listen and understand. Whether my counselor was really interested in what I was going htru or not she did listen and she has helped me alot.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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