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Need A " Pep Talk"; Very Discouraged And In Pain
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I was hesitant to even post this because I don't mean to whine, but all of you have probably felt this way at some point in the beginning of your healing, too and I know you will understand. I am almost 3 months gluten-free. Some of you know my long story, so I will not repeat it here.

I am having a hard time right now. I am fighting to remain positive. My GI issues are slowly resolving (yaay!) and that awful, scary spaciness is disappearing. I know the gluten-free diet is working and I know I will heal in time.

The really hard part is I am in grueling PT for chronic pain in my neck, back, legs, pelvic floor...and burning neuropathy. I cannot take any medications. They all make me ill.

I am not complaining, honest!

I just want to hear that I am going to heal in time and feel better.

I have been told by the PTs that this chronic pain can resolve! (some doctors told me otherwise, but I do not listen to them anymore. They have been wrong about me all along and I went undiagnosed for years)

It is possible to restore lost muscle mass and function, but that it takes about a year. The muscles that are impaired by tight knots and facsia are really weak and painful. We believe the toxins from a leaky gut and inflammation from gluten are key factors. It hurts to sit, lie down, walk...even my cheek against the pillow hurts because of jaw & facial pain. I can't do any of the things I love, no dancing, swimming,gardening, cooking, even reading. I can only stay on here for an hour or so....

but I will not give up hope!! :) I have things I want to do!!

I have been ill for so long and I know it takes months maybe a year to heal the gut. I accept that and I am actually HAPPY to know it is celiac (yes, I said HAPPY because it is an ANSWER after years of no answers) and willingly do this gluten-free diet because all I want is to get well!! I look at all of this as going forward!! :)

I am just very tired from lack of quality sleep. I am up and dressed every single day not matter how little sleep I get and trying to "live normally" every day.

I am blessed because my husband has been my rock--supportive and loving. My whole life came to a stand-still 3 years ago and I have been trying to reclaim it ever since.

I am soooo grateful for all of you on here. I guess I just need to hear that it is normal to feel a bit discouraged early in the healing process and that things will improve in the coming months. Geesh, I think I just gave this pep talk to someone else---why can't I see it myself? I have no doubt I will get well, I am just sagging today....

Guess I am looking for a pep talk. :) I have tried to be so strong for years but I am running out of gas.

Anyone have one handy??? Thanks for listening. This forum has been a lifeline for me!! :) Bless you guys!!

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Oh IrishHeart, I understand and want you to know that--yes! you will continue to improve. It may be in "fits and starts" at first, especially since you were so sick for so long.

I think it's amazing how you jumped in here with so much encouragement and support for others--let us do the same for you now ;)

It's normal to think about all the time already spent on being ill and the long road to figuring it all out--it's hard but we need to look forward and know that there is light at the end of the tunnel! You are doing great and days like this are inevitable. Take the time to feel what you need to and then forge on--it's all going to be ok :D

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Finding out what the problem is is a very important first step. Especially after being ill for so long. It's only normal to become a bit impatient to feel better once you actually KNOW what caused the problem in the first place. It took years for your system to get so messed up - but hopefully (for all of us), it won't take nearly that long to heal the damage. I'm so sorry to hear you are having such trouble. Have you seen a naturopathic physician? They might be able to recommend something for the pain that won't make you sick. Not cheap, but I've had great results in the past. Maybe acupunture? I really hope you feel better soon. That "I can't get comfortable" feeling is the worst - physically and emotionally.

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You aren't complaining -- that is the least amount of complaining I've ever heard! ;) But you are tired. Tired of struggling, of being in pain, of not sleeping. I wasn't able to sleep for about two months recently, and I was miserable. But you'll get through it, and you will feel better. It sounds like you are focused and finally have a concrete answer. Hang in there, and know that you are an inspiration to many.

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I sure do wish we could just flip some switch and be instantly healed. Glad to hear you are making some progress and it will continue. Not being able to sleep is hard and while I admire your determination to get up and moving, and we do need to do that, if you can sleep do sleep. Sleep helps the body heal and if it means getting up a bit later for a bit there is nothing wrong with that. We just went through a time change so if you can avoid what is effectively getting up an hour early you may want to do so. If you can nap, nap. Have you ever done any yoga? Sometimes the more gentle stretches may help. I also found long hot soaks in the tub or even frequent hot showers to help relieve some of the muscle tightness.

I do hope you are dancing and doing everything you enjoy without pain soon.

(((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))

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Maybe acupunture?

Great thought. If you have an acupuncturist near you and you haven't tried it you may want to try a couple of sessions. I found them to be very helpful even before I went gluten free. I don't know why it worked but it did. My guy used a combo of the needles and heat lamps. I have livedo reticularis and was purple before diagnosis. I would lay down on the table purple and be a normal color when the session was finished. Of course as soon as I went home and ate my whole wheat bread I was purple again. :blink:

It may help a great deal.

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Thanks, everyone! You are all so sweet and uplifting!

I appreciate all your suggestions, and I thought they would all help too, however...I should explain. For 3 years, I have tried MANY sessions of acupuncture, PT, MT, myofascial release, even rolfing. I spent 2.5 years with a naturopath, functional med. doc, supplements, physiatrists, saunas, the gym ....trust me when I tell you THOUSANDS and THOUSANDS of DOLLARS on therapies of all kinds...stress reduction classes, biofeedback, yoga (which I love!). I tried everything!.The yoga and tai chi is not easy as I have a dislocated coccyx and SI joints and numbness, burning, tingling and joint and bone pain and my legs don't hold me up for long. Every person said the same thing after working with me for months..." this should be working...I think something is keeping you ill" (yeah, we know what it is now)

I have severe pelvic floor issues and see a specialist PT for it. I researched for months to figure that part out as no doctor could help me ( I was told to get a scooter or a wheelchair--HUH!!?? no way!)and now, I am finally getting some relief. I have had to diagnose myself in every aspect. (good thing I can read, although with the spacey head, it was not easy :P )

I could not sit comfortably at all for 3 years! Sitting in a tub is not possible, otherwise I would soak for hours. The PT says an injury of this nature takes maybe a year to resolve. yikes...anyway...I always look forward; I am no quitter!!

I just needed a boost from you all, I think. And you have provided it. :D Thanks a million!

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Are you taking B12 suppliments? I had a lot of pain with numbness and tingling when I was low on B12. I got injections for awhile and they really helped!

I don't know how much mobility you can handle but Netflix has quite a few Yoga workouts for aches and pains on demand.

I think as you continue to heal you will find a lot of your issues going away and you will be feeling tons better! :) Try to pamper yourself where you can in the meantime to keep your spirits up! Maybe a manicure or pedicure? Rest as much as you can. Treat yourself to gluten free goodies now and then!

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Are you taking B12 suppliments? I had a lot of pain with numbness and tingling when I was low on B12. I got injections for awhile and they really helped!

I don't know how much mobility you can handle but Netflix has quite a few Yoga workouts for aches and pains on demand.

I think as you continue to heal you will find a lot of your issues going away and you will be feeling tons better! :) Try to pamper yourself where you can in the meantime to keep your spirits up! Maybe a manicure or pedicure? Rest as much as you can. Treat yourself to gluten free goodies now and then!

Thanks, hon!! yes, all my vitamins are on board and I have great levels! I supplemented for years...my D, Bs, B-12 etc....all good.

I see a PT for severe pelvic pain, so some yoga is off limits for me....but I do what I can and I do love it!

I agree---I think when the inflammation in the gut goes down and the muscles & tissues clear of the gluten, I should see more healing. Right now, it is just so painful....I'll get there.

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Yes, you can heal. You may never get to where you can completely get rid of the discomfort, but you are capable of getting to where you can ignore it. Most of the neuropathy should go away if you stick to the gluten free diet.

Try altering your sleeping position. I hardly ever sleep in a "conventional" position anymore, except for naps or short periods of time. Instead, I use pillows and/or bedwedges to prop myself up into a semi reclined position, and I am really careful about my neck. Sometimes I will prop one or both knees up with another pillow. I also have a lot of pillows on the couch for this. The difference between sleeping flat and slightly upright is stunning, it's the difference between being able to walk normally in the morning and having to take several hours to loosen up in my hips and lower back.

If I am going to have to be loose the next day, I may deliberately go short on sleep, because 8- 9 hours in a bed will just make me stiffer.

I also will sleep when I need to, and stay awake when I want to. I respect my biological cycles, which may be different than other people's. If I'm awake, I try to use the time to do what needs done, and if I need a nap before dinner, I take it. It's really, really hot here in the summers sometime, I've been known to go down to the barn and clean stalls at 2am to beat the heat, the horses are the same way, they will be up and awake and eating hay or grazing when it's cool, and sleeping when it's warm and quiet. They might sleep between 10pm and 3 am, and then take a nap in the mid morning when it first starts to warm up, and then be active in the early evening again. I also know that if I want to be able to sleep, I need to get some exercise. There is nothing like a little late afternoon exercise to make one sleep like a rock. :)

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I was hesitant to even post this because I don't mean to whine, but all of you have probably felt this way at some point in the beginning of your healing, too and I know you will understand. I am almost 3 months gluten-free. Some of you know my long story, so I will not repeat it here.

I am having a hard time right now. I am fighting to remain positive. My GI issues are slowly resolving (yaay!) and that awful, scary spaciness is disappearing. I know the gluten-free diet is working and I know I will heal in time.

The really hard part is I am in grueling PT for chronic pain in my neck, back, legs, pelvic floor...and burning neuropathy. I cannot take any medications. They all make me ill.

I am not complaining, honest!

I just want to hear that I am going to heal in time and feel better.

I have been told by the PTs that this chronic pain can resolve! (some doctors told me otherwise, but I do not listen to them anymore. They have been wrong about me all along and I went undiagnosed for years)

It is possible to restore lost muscle mass and function, but that it takes about a year. The muscles that are impaired by tight knots and facsia are really weak and painful. We believe the toxins from a leaky gut and inflammation from gluten are key factors. It hurts to sit, lie down, walk...even my cheek against the pillow hurts because of jaw & facial pain. I can't do any of the things I love, no dancing, swimming,gardening, cooking, even reading. I can only stay on here for an hour or so....

but I will not give up hope!! :) I have things I want to do!!

I have been ill for so long and I know it takes months maybe a year to heal the gut. I accept that and I am actually HAPPY to know it is celiac (yes, I said HAPPY because it is an ANSWER after years of no answers) and willingly do this gluten-free diet because all I want is to get well!! I look at all of this as going forward!! :)

I am just very tired from lack of quality sleep. I am up and dressed every single day not matter how little sleep I get and trying to "live normally" every day.

I am blessed because my husband has been my rock--supportive and loving. My whole life came to a stand-still 3 years ago and I have been trying to reclaim it ever since.

I am soooo grateful for all of you on here. I guess I just need to hear that it is normal to feel a bit discouraged early in the healing process and that things will improve in the coming months. Geesh, I think I just gave this pep talk to someone else---why can't I see it myself? I have no doubt I will get well, I am just sagging today....

Guess I am looking for a pep talk. :) I have tried to be so strong for years but I am running out of gas.

Anyone have one handy??? Thanks for listening. This forum has been a lifeline for me!! :) Bless you guys!!

Hon....sounds like you need a pan of gluten-free brownies, along with a good acupuncturist!

I am not being snarky but for this type of chronic problem, western medicine is very bad and eastern medicine is very good. I would strongly recommend trying to contact one and have a consult with them. They do very good things.

And yes, you will get better....I promise. Your attitude is good for someone in such remarkable pain and that goes a long way in getting you there. It took me a grand total of 3 years before the vast majority of symptoms all went away but go away they did and haven't returned. It may not take you that long so please do not worry about that number. Having a husband like yours will guarantee a recovery. I know because my husband is the same....he took his marriage vows very seriously and has never deserted me emotionally in those 3 years of recovery.

Maybe a Celiac support group may help you to cope and stay sane? Aside from your on-line one? :)

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Have you thought about something like accupuncture? That has worked miracles for me in the past. Good luck and hang in there, you will continue to improve!!

Dee in NC

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Thanks, all you sweet people... :) I just needed to hear it will get better.

YES, I had over 40 sessions of acupuncture. No change. Over 100 sessions of myofascial release. 57 chiropractic visits. 6 months of PT. A rolfer. We even traveled to a pain clinic in another state for trigger point therapy!

It hurts to lay down. to sit. to stand. to walk. I just keep changing what I am doing all day long because too long at one thing hurts. Have you ever had a pulled muscle? That's what I feel like--from head to toe.... but also on fire!! If you have never read about trigger points, that's what I am filled with. (NOT FIBRO TENDER POINTS--those are different)..It's insane really and I do not know how I stay sane, reasonably humorous and haven't jumped off a bridge by now. It's been really bad.

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

Thanks. Consider yourselves hugged!

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Thanks, all you sweet people... :) I just needed to hear it will get better.

YES, I had over 40 sessions of acupuncture. No change. Over 100 sessions of myofascial release. 57 chiropractic visits. 6 months of PT. A rolfer. We even traveled to a pain clinic in another state for trigger point therapy!

It hurts to lay down. to sit. to stand. to walk. I just keep changing what I am doing all day long because too long at one thing hurts. Have you ever had a pulled muscle? That's what I feel like--from head to toe.... but also on fire!! If you have never read about trigger points, that's what I am filled with. (NOT FIBRO TENDER POINTS--those are different)..It's insane really and I do not know how I stay sane, reasonably humorous and haven't jumped off a bridge by now. It's been really bad.

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

Thanks. Consider yourselves hugged!

It sounds like you just have a lot of inflammation and that does respond to the gluten-free diet....over time. Every Celiac has loads of inflammation in their bodies when initially diagnosed so that is normal for this disease.

Do you think there is the possibility that you may have fibromyalgia? Your symptoms sound like that and it's another one of those autoimmune problems, like Celiac.

I also wonder if hypnosis could possibly help you with the pain aspect of things? Would it be possible to be hypnotized and have them make the suggestion that you would not feel the pain on such a great level? Hang in there.....we'll make a human guinea pig out of you yet, if you don't already feel like one! :P

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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:

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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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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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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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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...

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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!!

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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!

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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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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!

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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???

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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.

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