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Need A " Pep Talk"; Very Discouraged And In Pain


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39 replies to this topic

#16 jerseyangel

 
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Posted 18 March 2011 - 10:58 AM

okay, I am going with the thought that TIME is the key.

Good plan! :D Now that your body has stopped fighting with the gluten, you might just be amazed. Hugs back ;)
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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#17 Gemini

 
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Posted 18 March 2011 - 11:08 AM

well,gemini, hypnosis is about the ONLY thing left I haven't tried... :lol: I may give it a go.

I meditate and try to use all I learned in biofeedback.

The rheumatologists (3 of them) and 2 physiatrists said I do not "present with typical FM" (and my best friend with FM says she doesn't feel like I do)...and I never thought I had that either. Widespread inflammation and trigger points are different from tender points of FM from all I have read. They refer pain to distant places and are knots in taut bands in the muscle. Plus, I do not mind being touched during massage (except for those knots) and oddly, I have remarkable flexibility. I can do the yoga, just not for long due to weakness.

I think the bone pain is def. a gluten thing....as I have no rheumatoid factors either...been tested repeatedly.....strange huh?? :blink:


No...the bone pain is not strange. Something else we have in common.....for about 3 years after diagnosis, I had this terrible bone pain in my right femur bone. It hurt so much on some days, I would drag my leg. It ached like a toothache. I had x-rays done and my PCP said my bones looked fine...no abnormalities. I do have osteopenia in my hip and osteoporosis in my spine from the delayed diagnosis of celiac disease, which I do weight training to fix. Then all of a sudden, I noticed it was gone. It did not hurt everyday but one day I realized it hadn't come back. That was 3 years ago and I haven't had it since. I think it was just from all the inflammation in my body and the length of time it took to completely heal. I do have rheumatoid factors but those are slowly going down and nothing else hurts...at all. It isn't RA. No more bone pain anywhere. So you see, anything is possible and doctors just are not good at this type of stuff. They make guesses but are rarely correct. Don't lose the faith because miracles happened with me and many other Celiacs and it will for you too! :D
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#18 yolo

 
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Posted 18 March 2011 - 11:12 AM

Hi Irish Heart,
I am sorry to hear you are still suffering so much, but like the others said here before me, it will pass in time once you find the right track.

I was ill for so many years I don't care to recall it. but now here I am age 61 and feeling better than ever overall though I still have my down days like yesterday after I had half of a papaya the night before...which was actually a big clue since i also react similarly to bananas.

Am wondering if you are having any success going off the salicylic acid? I am also now off amines too. Both banana and papaya are high in amines. Apparently it is not that uncommon for someone to be sensitive to both salicylates and amines. Itchy bitchies plus not sleeping seem to go together for me. I took benedryl and now am resolved not to eat amines as much as is humanly possible.

My friend Graeme I just mentioned to you yesterday is very sensitive to casein.
He is doing better today by the way. Thanks so much for your telling me of your experience. It reminds me actually so much of what I went through too--ending up having to go off thyroxin after I had gone off most gluten (I was on a cave man diet at the time).

It seems the ashwagandha, extra B vitamins, 5HTP, and magnesium plus dandelion and chicory root tea are all helping Graeme's adrenals normalize and his body to detox. The 5HTP helps with sleeping better by the way. Healthy adrenals are necessary for healthy thyroid function. Without them being up to snuff (even by just a little), it makes taking the thyroxin toxic.

The other thing that has been helping Graeme sleep a little better is hypnotherapy and EFT (Emotional Freedom Technique). The psyche can and does interact with the body. Its kind of like the chicken or egg question, both are necessary for healing.

Hang in there meanwhile. Even if you can't do physical yoga, you could meditate and get a lot out of it. Perhaps getting one of those meditation disks with soothing sounds could help transport you into a more peaceful healing place especially important when you you are having a difficult day.

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!

#19 IrishHeart

 
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Posted 18 March 2011 - 11:17 AM

GEMINI

So Glad to hear your pain is gone! YAAY!!

Thanks for telling me this!! I feel like I am one giant toothache sometimes. And it is directly related to gluten because when I get accidentally glutened, I swell up and feel like a giant stuffed burning sausage... :blink: in other words, it gets WORSE, so I KNOW that's what's going on.

My bone density test was okay, thank goodness. and yes, all the MRIs, xrays, EMGs, etc..all normal.

Believe me, I NEVER lose faith. I refuse to quit...that's why I am going to get well! :D :D

My friend calls me "a warrior princess" ;) I don't know about that, but I am a fiesty sort.....even when I could barely speak or walk....I am waaaaay better than I was just 3 months ago...
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#20 yolo

 
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Posted 18 March 2011 - 11:22 AM

GEMINI

So Glad to hear your pain is gone! YAAY!!

Thanks for telling me this!! I feel like I am one giant toothache sometimes. And it is directly related to gluten because when I get accidentally glutened, I swell up and feel like a giant stuffed burning sausage... :blink: in other words, it gets WORSE, so I KNOW that's what's going on.

My bone density test was okay, thank goodness. and yes, all the MRIs, xrays, EMGs, etc..all normal.

Believe me, I NEVER lose faith. I refuse to quit...that's why I am going to get well! :D :D

My friend calls me "a warrior princess" ;) I don't know about that, but I am a fiesty sort.....even when I could barely speak or walk....I am waaaaay better than I was just 3 months ago...

We like feisty!!
  • 0
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!

#21 IrishHeart

 
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Posted 18 March 2011 - 11:22 AM

Thanks, BEA!

I do have many soothing tapes and use them frequently. I do some simple yoga moves and enjoy them.

I am not seeing a huge difference in the mouth burning thing without SA, but I think TIME will tell. Others with burning mouth said theirs resolved post gluten-free.

I hope your friend Graeme feels better soon.

I learned EFT from the biofeedback specialist.

As I said above, you name it, I have done it!! LOL
Thanks!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 mushroom

 
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Posted 18 March 2011 - 11:45 AM

Oh hon, I am so sorry to hear how much you are suffering. Whine away as much as you want - you need to!! Your spirit and courage are an inspiration to us, your warmth and humor, and all this time you are in unbearable pain :o This too shall get better - now that you have determined its cause. Don't think of the year, think of each day ahead being better than the last and leading in a straight line up to your reward of freedom from pain. I agree with the suggestion of possibly trying to find a different sleeping position. I have a reclining chair that reclines all the way back and I have lost count long ago of how many years I have slept in that chair. I now have a hospital-type bed I sleep in, otherwise I cannot start functioning in the day for hours (or stay in bed for very long for that matter). Do you think it would be possible you could sleep better in some other position that would take pressure off your most painful areas, or are they all equally painful?. When I am away from home I use so many pillows (always call the hotel concierge for more pillows and raise the head and foot of the bed (both on top and underneath) and travel with with own little pads and stuff :lol: Anything for sleep!!! because it is so healing.

My wish for you is freedom from pain and for that blessed sleep. Hang in there and keep that wonderful courage and strength and spirit working on your behalf. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#23 IrishHeart

 
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Posted 18 March 2011 - 12:52 PM

Oh hon, I am so sorry to hear how much you are suffering. Whine away as much as you want - you need to!! Your spirit and courage are an inspiration to us, your warmth and humor, and all this time you are in unbearable pain :o This too shall get better - now that you have determined its cause. Don't think of the year, think of each day ahead being better than the last and leading in a straight line up to your reward of freedom from pain. I agree with the suggestion of possibly trying to find a different sleeping position. I have a reclining chair that reclines all the way back and I have lost count long ago of how many years I have slept in that chair. I now have a hospital-type bed I sleep in, otherwise I cannot start functioning in the day for hours (or stay in bed for very long for that matter). Do you think it would be possible you could sleep better in some other position that would take pressure off your most painful areas, or are they all equally painful?. When I am away from home I use so many pillows (always call the hotel concierge for more pillows and raise the head and foot of the bed (both on top and underneath) and travel with with own little pads and stuff :lol: Anything for sleep!!! because it is so healing.

My wish for you is freedom from pain and for that blessed sleep. Hang in there and keep that wonderful courage and strength and spirit working on your behalf. :)



"shroom" :) you doll

Thanks once again for your kindness and encouragement. I am truly fortunate to have found this site and to know that in time, I will heal as you all have.

yes, the sleep thing is a bugger. <_< I try different pillows, wedges, foam padding, we even got a new bed!!. I try the recliner, but my neck is the sticking point.
darn neck. Yup, I travel with my pillows and the "sound machine" as well. I had sleep issues as a baby, for pete's sake....Ah well a NEW massage therapist is trying her hands on that next week...we shall see. I think I hold the record for most practitioners, allopathic or alternative, seen in 3 years. I may have to call Guinness book of records.

In the meantime, as Jerseyangel told me...."there is a light at the end of the tunnel" and as I told her....yes, and I know it is NOT an oncoming train.. :D .not any more, anyway.....that's been the joke in our home the last few years.....humor saved us, even when it was not very funny at all.

Hope things are well in Christ Church. You're in my thoughts!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 mushroom

 
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Posted 18 March 2011 - 01:50 PM

Hope things are well in Christ Church. You're in my thoughts!


Thank you for your thoughts, they're special. :wub: We had a national day of mourning for the City yesterday, as well as for all those whose lives were lost, including our Chinese and Japanese foreign language students whose school was in one of the collapsed buildings. Tens of thousands gathered in our big central park and cheered and applauded all the Urban Search and Rescue Teams as they entered. Prince William came, representing the Queen, and his most memorable line was "Grief is the price we pay for love" (given to him by his Grandma, he admitted). He was probably saying desperately, Gran, I am representing you, what am I supposed to say? :D So we mourned the loss of our city as we knew it, but like you, we are looking forward to what will rise from the rubble, perhaps something more beautiful???
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#25 eatmeat4good

 
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Posted 18 March 2011 - 02:19 PM

Aww Irish!

You have been through so much! I'm so sorry you are having to continue in pain. They told me I had fibromyalgia too, and that it doesn't get any better and I would just have to live that way. Oh my God. I am so admiring of you for not giving up! And you are always so positive and pleasant with others, it is hard to believe you do all that while living with such chronic pain. You really are amazing.

I don't have any good advice. I just want to send you a cosmic hug. And to let you know you are appreciated here. You just keep fighting the good fight. Time is on your side and every gluten free bite of food you put in your mouth is going to counteract all the years of inflammation from the "gluten years"! I wish I could take it away and that no one would ever have to feel so bad. I hated not being able to function or do the things I wanted/needed to do. You are not alone. It is obvious that every fiber of your being wants to be well. You can do this and just try to focus on what has improved and gone away...hopefully never to come back.

You are an inspiration me. I wasn't quite so pleasant or positive about it when I was seriously ill and not believed. I still have bad days and wonder if I am going backward, but then I have a good day and realize that it just takes time and positive supportive people in your life. I wasn't one of the lucky ones whose husband stayed. Mine sided with the Dr.'s that I was hypochondriac and he cut his losses. So for me, this place is my primary support. That makes people like you...VERY important and very special. Please know that you are helping other's every time you share what you are going through. And when you need support, you have it here my friend.

Wishing you an easier day than the last one.
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#26 yolo

 
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Posted 18 March 2011 - 02:33 PM

Aww Irish!

You have been through so much! I'm so sorry you are having to continue in pain. They told me I had fibromyalgia too, and that it doesn't get any better and I would just have to live that way. Oh my God. I am so admiring of you for not giving up! And you are always so positive and pleasant with others, it is hard to believe you do all that while living with such chronic pain. You really are amazing.

I don't have any good advice. I just want to send you a cosmic hug. And to let you know you are appreciated here. You just keep fighting the good fight. Time is on your side and every gluten free bite of food you put in your mouth is going to counteract all the years of inflammation from the "gluten years"! I wish I could take it away and that no one would ever have to feel so bad. I hated not being able to function or do the things I wanted/needed to do. You are not alone. It is obvious that every fiber of your being wants to be well. You can do this and just try to focus on what has improved and gone away...hopefully never to come back.

You are an inspiration me. I wasn't quite so pleasant or positive about it when I was seriously ill and not believed. I still have bad days and wonder if I am going backward, but then I have a good day and realize that it just takes time and positive supportive people in your life. I wasn't one of the lucky ones whose husband stayed. Mine sided with the Dr.'s that I was hypochondriac and he cut his losses. So for me, this place is my primary support. That makes people like you...VERY important and very special. Please know that you are helping other's every time you share what you are going through. And when you need support, you have it here my friend.

Wishing you an easier day than the last one.

I echo the sentiment. Irish heart is a trooper we can all take inspiration from.
I also want to add that you (eatmeat4good) have helped me immensely by alerting me to the possibility of salicylic acid sensitivity. Without your input I still wouldn't be able to sleep.
  • 0
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!

#27 eatmeat4good

 
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Posted 18 March 2011 - 04:26 PM

Thank you Yolo! I think about you all the time! When I get down about my own "hell" I have gone through, you are the one person I actually helped when I was early in my recovery and felt my life was just a waste for the last 7 yrs. Your success with salicylic acid sensitivity made me feel valuable again. And I desperately needed that as I crawled out of the cave of gluten despair. I feel an emotional bond with everyone who has suffered for years at the hands of gluten and ignorant Dr.'s. No one understands like y'all do! I love you guys!
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#28 txplowgirl

 
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Posted 18 March 2011 - 07:25 PM

Irish Heart, I know exactly how you feel. There were days I hurt so badly I thought a few times of just ending it. But I had my dad as an example of someone who put one foot in front of the other and kept going. My favorite saying that he had that we also put on his gravestone when he passed was "I'm in pretty good shape for the shape i'm in".
When he was 13 he was working as a cowboy in the early '40's on a ranch out in west Texas. He was chasin a cow that went over a 50 ft cliff, he and the horse that he was on went over to. They landed on the cow. Killed the cow and horse, broke his pelvis in 3 places, one arm in 2 and well, whiplash you could say. Then he joined the army in the last year of WW2 and was stabbed in the back with a japanese bayonette. Took out 2 ribs and his spleen. Then, in '57 he was in a car wreck, drunk he tried taking a 30 mile an hour curve at 100. Police was chasing him. Rolled his car 9 times. Broke his back in 5 places, rebroke his pelvis in 4 places, broke 5 ribs, his neck in three, right shoulder, left shin, right femur. Left arm. He was seriously messed up. Dr's told him he'd never walk again. My grandmother told me he looked at that dr and said. "Wanna Bet"? He walked out of that hospital a year later but not without pain for the rest of his life. Then in '94 he had a girlfriend go nuts on him and shot him with a .410 rifle at close range 4 times. We nearly lost him on that one for sure. Had a bullet lodge next to his spine that the dr's couldn't remove without paralyzing him. Needless to say that left him in a great deal of pain. While they had him in surgery cleaning his insides out they discovered he had colon cancer. On top of that he had congestive heart failure. The dr's gave him a yr to live and again he said "wanna bet"? He lived another 8 yrs but the last 6 months were really bad. He finally passed from a heart attack.
So, as bad as i've hurt I have him to give me inspiration.
I take 10 mgs of Melatonin and 200 mgs of 5-HTP to help me sleep. I also take 100 mgs of Curcumin twice a day. That is an anti inflamatory. I take 1200 mgs of White Willow Bark twice a day for pain. 500 mgs of Magnesium twice a day for pain. Then diet wise. First it was the gluten, then the dairy, then the saoy, then I had to eliminate anything with Aspertame in it because that created a lot of pain, so no more diet drinks, arrhhhhh! Then the nightshade vegetables which created a lot of pain.
I've been like this since I was 8. Didn't find out what was wrong with me until I was 44. I have a lot of years to make up for. It's been 2 years now and i'm just now getting to where I can go up to 4 hours without hurting. There are still days when I barely have the strength to open a jar of something but I push through it. I have to because the bills go on. I'm still dealing with fatigue but I have learned not to push myself and deal with it a little at a time. Not easy when you drive a truck cross country. But when those days get bad I think of my daddy and remember there were days he could barely walk himself but yet he pushed himself. He gives me the push I need to keep going.
I feel myself getting better a little at a time but i'm not there yet. Hang in there Irish, you can do it. Sending ((((HUGS)))) your way.
  • 1

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#29 healinginprogress

 
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Posted 18 March 2011 - 09:31 PM

Awwwwwwww, sweetie! You DID just give someone this pep talk...ME :) I wish I had more of a pep talk for you, but I think I'm still all gluten-y LOL But these people have displayed some amazing support and encouragement that hopefully has helped you a bit...it helped me a bit, too. I wish the relief was more immediate, but I guess it's true that the damage has accumulated over years and years, so it makes sense that it will take time to undo, I suppose.

And it IS tough, thankful as I am to finally have some sort of an answer, it is tough to know what is wrong and to do everything you are supposed to do to resolve it, and STILL feel like CRAP! I keep trying to believe that it will get better. All these people wouldn't be lying to us, right? :P

Hang in there, IRISHHEART, you are amazingly strong to not only go through this, but to be able to support others and maintain a sense of humor while you're at it.
  • 1

#30 IrishHeart

 
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Posted 19 March 2011 - 06:16 AM

Thank you for your thoughts, they're special. :wub: We had a national day of mourning for the City yesterday, as well as for all those whose lives were lost, including our Chinese and Japanese foreign language students whose school was in one of the collapsed buildings. Tens of thousands gathered in our big central park and cheered and applauded all the Urban Search and Rescue Teams as they entered. Prince William came, representing the Queen, and his most memorable line was "Grief is the price we pay for love" (given to him by his Grandma, he admitted). He was probably saying desperately, Gran, I am representing you, what am I supposed to say? :D So we mourned the loss of our city as we knew it, but like you, we are looking forward to what will rise from the rubble, perhaps something more beautiful???



I have often thought of people rising out of this gluten pain hell as the "phoenix rising from the ashes"...YOU ALL are the inspirational ones!!

thanks for the thoughts, 'shroom and I feel your strength every time you post your thoughts to comfort others on here! Blessings on you!!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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