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What A Difference A Year (Well Four Years) Makes!


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#1 GottaSki

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Posted 13 April 2013 - 06:07 AM

Good Morning Everyone!

 

Many of you know that mine has been a very long road to gain health -- often we focus on what we can't have or do as it is tough to lose food and activities - sometime it feels like we will never get them back.

 

So today I share:

 

One year ago I was in the midst of the worst flare of my life -- I call this my "Human Amoeba" stage.  With the help of my husband and sons I slowly crawled off the couch - yep - for three months I wasn't even able to walk to my bed -- I felt like I was dying and everyone in my family thought the same thing.  More research and a few more food adjustments and I become vertical in the Fall of 2012.

 

Today -- this is my day:

 

Wake to pain and unbelievably stiff joints.

Climb in epsom salt bath for 20 mins

Green Smoothie, then coffee

Off to Skilled Nursing Facility to check on Mom

Walk in a a fundraiser for NAMI

Visit a famer's market that my old high school has created to raise funds for the school

Tour two retirement/nursing homes

Go to a housewarming party for a young friend that I helped find good contractors to improve their recently purchased home

Collapse in my comfy chair with a glass of wine :)

 

I post this to be clear -- I am not 100% - I have days with unbelievable pain, serious allergic type reactions can happen at any moment -- but I am hugely better than I was one year ago -- I have a life and am getting stronger.

 

For those struggling -- hang in there -- it does get better if you keep looking for awswers!

 

To those that helped me get here -- thank you -- I couldn't have made it without everyone's advise :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


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#2 Adalaide

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Posted 13 April 2013 - 10:43 AM

That sounds like a fantabulous day. (You know, not counting the waking up part.)

 

Hopefully you can avoid that allergic nonsense as much as possible though. Not anyone's idea of a particularly good time I am sure.

 

Plus, 100% is overrated. Then people just expect more from you. :lol: It isn't so much what kind of percent we wake up with, it is all in being able to face the day ready to give all of what we have to to that percent. If you have a 10% kind of day, and give all 10%, then you gave everything you had, which is 100%. (This may be my excuse for not doing laundry some days, or dishes others, but it sounds good right?)

 

This should give everyone hope that even though our battles may seem hopeless, as long as we are willing to keep fighting it out, we can eventually win.


  • 1

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#3 IrishHeart

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Posted 13 April 2013 - 10:54 AM

Ski, my sweet friend,

 

Your story is beyond inspirational and your job as head cheerleader around here has not gone without merit. You've been a large part of my recovery the past year,  too and I'd like to join in and tell my healing story so that future readers can see that healing happens!!!--even for those of us who were dying the slow death that comes from long undiagnosed celiac.

 

The healing process is the "mother of all exercises in patience". It is so damn slow sometimes and it is not always a straight line and we all (understandably) become frustrated and discouraged. Believe me, I get it. I've cried enough tears of frustration to float the Queen Mary.
Trying to reverse a lifetime of malabsorption and what it does to the bones, muscles, joints, brain, the other organs, and your very spirit....well, it takes time. This is what my doctor tells me: Every year is a healing year. He's right. The first year was fraught with anxiety, pain, and major  frustration. Every night, I tearfully asked my sweet hubs: "But when will I feel better? When will the pain stop? " And every night, he kissed my feverish forehead and said "Soon, babe".

 

I had not sleep well for 3 years because of the intense pain in my bones, joints, tissues, muscles, nerves. Sitting and lying down was painful for me; every spot where my body pressed against the mattress burned and throbbed....even my cheek against the pillow. It was hell, to say the least. And it did not resolve magically just because I went gluten-free. Every morning, I told myself, okay, just stay the course....this is one day closer to "Soon".


The second year, I really started to reclaim my life.

 I have done more --physically-- than I could since 2007. Simple things we all take for granted: reaching for something on a high shelf,  opening a jar, cooking, walking down to the mailbox, climbing stairs, carrying grocery bags, swimming, dancing,  traveling, going to a ball game, stacking wood and driving my car. These things were laborious and often impossible. I became a prisoner in my own home. 

Now, my brain works almost as sharply as it once did. No more brain fog,  ataxia, blurred vision, vertigo, or memory problems. (what was I saying? oh yes)....improved memory.   :D

And no more anxiety or fear. My hair is starting to grow back in, too.  Thank goodness. The bald look just ain't me.


Every day is a healing day. I am not the sick, dying woman I was 2 years ago. Am I “there yet”?

Nope, but I am not in hell anymore either. I tell you all this so you can understand that I have had to exercise enormous patience because really--what choice do I have? What choice do any of us have? It is what it is. This is how the disease is put into remission.

 

Last month, I traveled over 2300 miles in the car and visited good friends. I walked on the beach.

I swam with dolphins in Key Largo. I could not have done that even last year at this time..

What a difference a year makes, indeed!!

 

I was a fish in the water all my life, but for a while there, I could not even lift my arms to swim or even hoist myself in and out of the pool. It was excruciatingly painful..

 

This morning, I

 

walked a 20 minute mile on the treadmill

rode a mile on a bike (I haven't been able to ride a bike since 2006)

did 10 different strength-training machines

lifted weights

went out to lunch

and now, I am cleaning out a room to paint it

Do I still have pain? oh, you betcha. But it's not the "just kill me now level" that it was.

 

I have had a constant nagging, make you cry pain in the muscles of my right side (the oblique) since 2008 (not kidding)  :angry: and no amount of massage, PT or stretching, heating or anything would make it go away.

 

Today, I noticed....it is gone. whoohoo!!!! (hoping my hamstrings and traps give it up soon, too!)

 

But really, 3 years ago, before DX, I could not walk the length of my driveway without crying and gasping for breath, the pain in my legs and back was so bad the doctors told me to "accept my fate and get a scooter to get around".

Sorry, docs---you were wrong..


Just take one day at a time. Eat well. Drink a lot of water. Dehydration wreaks havoc. Play. LAUGH. Spend time with someone you like. Talk to someone everyday, anyone--even if it's just Fred, the UPS guy ---or an email buddy..... or US on here!!!

Don't  isolate.
Exercise, if you have the stamina for it, but just keep moving. Muscles will atrophy if you don't move.
IT GETS BETTER, I promise you.

Never, ever give up. A diagnosis of celiac is not the end of your life, it's the path to healing --and getting your life back.  


  • 2

"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 

"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


#4 bartfull

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Posted 13 April 2013 - 12:54 PM

  "If you have a 10% kind of day, and give all 10%, then you gave everything you had, which is 100%."

 

Adelaide, those are words to live by! I hope you don't mind if I have those words stamped on my forehead or something. :lol: I'm laughing, but truly, those words are the truth and if we all lived by them, none of us would ever feel guilty for being sick again. Thank you, thank you, thank you!

 

IH, Lisa, you have both been inspirations to the folks here. I'm glad you are both feeling better and pray that the healing continues for you both. :wub:


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#5 GottaSki

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Posted 13 April 2013 - 01:27 PM

If you have a 10% kind of day, and give all 10%, then you gave everything you had, which is 100%. (This may be my excuse for not doing laundry some days, or dishes others, but it sounds good right?)

 

 

Bartfull is spot on!  This should be printed on T-Shirts for anyone with an autoimmune disorder!!!

 

 

IH, Lisa, you have both been inspirations to the folks here. I'm glad you are both feeling better and pray that the healing continues for you both. :wub:

 

Right back at you :wub:


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 IrishHeart

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Posted 13 April 2013 - 01:42 PM

If you have a 10% kind of day, and give all 10%, then you gave everything you had, which is 100%. (This may be my excuse for not doing laundry some days, or dishes others, but it sounds good right?)

 

This should give everyone hope that even though our battles may seem hopeless, as long as we are willing to keep fighting it out, we can eventually win.

 

see, this is the kind of math--and logic--- I rely on you for, sweets. :lol:

Thanks. .I have  even had some 5% days but still got out of bed and did my "thang".

 

 

And here's my take on "battles and hope".

 

"You may have to fight a battle more than once to win it" --Margaret Thatcher

Absolutely true about celiac recovery.

 

Hope is what I hang my hat on. With hope, all things are possible.

 

Without it, you're already beaten. Screw that. I say :Never  give in.

 

 

IH, Lisa, you have both been inspirations to the folks here. I'm glad you are both feeling better and pray that the healing continues for you both. :wub:

 

I think it's safe to say we all inspire each other, sweet girl!!  :wub:


  • 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 

"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


#7 nan42

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Posted 13 April 2013 - 04:31 PM

You are all inspiring and i thank you for that. I have had MS for 26 years and Celiac for 8mos.. There is so much to learn about gluten. It all can be so overwhelming some days. Having one autoimmune disease was enough for me. No one ever told me that having one autoimmune disease put you at risk for developing more. So thank you for your posts they are all encouraging. Nancy :)
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#8 GottaSki

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Posted 13 April 2013 - 07:46 PM

Welcome Nancy!!!!

 

These pesky AIs do run together -- and it is very frustrating.

 

Let us know how we can help -- do check out the "Newbie 101" thread -- it is THE best place to review the basics....any questions - ask.

 

Hang in there :)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 nvsmom

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Posted 14 April 2013 - 07:03 AM

:) Thank you from me too. You've been a great cheerleader for me,even while going through your own health problems. I really appreciate the time and encouragement that you've given to me.  Thanks.  :)


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#10 CaliSparrow

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Posted 16 April 2013 - 11:23 AM

Thank you!
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#11 GF Lover

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Posted 16 April 2013 - 02:25 PM

Ski, IH.  You two make me cry so much.  Your honesty, caring, resilience and strength is a lifeline for me and your posts help people every day.  I am humbled and honored to call both of you MY friends.

 

Colleen 


  • 2

:D HAVE A SUPER SHINY DAY :D

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

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#12 IrishHeart

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Posted 16 April 2013 - 03:14 PM

Ok, now you've made me cry.  :D

And I was already a blubbery mess all day long anyway. 

Colleen, you've inspired me in more ways than I can count. I think it's safe to say we're all warrior princesses?

Love and hugs!


  • 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 

"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


#13 Gemini

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Posted 16 April 2013 - 03:30 PM

I just hit the 8 year mark this week and life is totally normal for me.....except I am gluten free.  I can't remember what it was like to be a gluen eater.

I am sore today but it's all because of those young trainers at the gym.  I am just happy I can keep up with them so I guess that's my recovery.  I have muscle

in places I never even had a muscle, pre-diagnosis.  The only complaint I have is the amount of time I spend on food prep and I like to cook too.  But I never get sick anymore with colds or the flu so I guess all that good eating is paying off.  I have also given up trying to make others understand this concept.  I have 2 friends who I KNOW have serious gluten issues to the point where one is on disability but apparently, that's not enough to make them do a dietary trial.  Oh, well.....I can't save everyone.

 

If you do this long enough, your pains will go away and life will get better and better.  I honestly have no aches or pains, period.  Just dry eyes and mouth from Sjogren's but if that's the most I have to whine about, all is good.  You know......I made the mistake of looking at photo's from the Boston bombings because I do live here and when I saw the horror that these people have suffered, I thanked God again for just giving me Celiac to deal with.  Really, I'm good! 


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#14 IrishHeart

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Posted 16 April 2013 - 03:50 PM

Well, Ms. Gemini

YOU have been a constant soirce of support and encouragement from the day I came on this site, so you know

how I feel about you, my friend

:wub: . 

And since I have met you in person, I can relate this to the readers of this post......believe me, this little dynamo Gemini is one tough cookie

who is healthy and happy.

She is a walking testimonial to the power of healing.

When I  grow up, I wanna be just like her :lol:

.


  • 1

"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 

"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


#15 Gemini

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Posted 17 April 2013 - 10:50 AM

Well....if you keep up that work out in the gym, we'll be able to hire ourselves out as body guards.  I am totally impressed because not too long ago, there was no way you could have had a day like that!  Healing is kind of funny.....you feel like things will never be completely normal and then, as time passes, you just start doing things you couldn't have done a year ago....or even 6 months ago.  Pain slowly diminishes and then you wake up one day and it's gone......hopefully never to return.  It does take a long time but nearly dying from Celiac doesn't exactly happen overnight, either.  Most importantly, you have to believe healing will happen and life will return to normal because if your mind doesn't co-operate, the physical part will not come easily or might not happen.  I still can't believe it's been 8 years gluten-free and I have even more trouble believing how many people fight changing their diet so much.  I mean, the friends I know are absolutely miserable, in pain 24/7, yet will not even attempt a dietary trial to see if gluten is the issue.  One of them even has a first cousin who is a sensitive, diagnosed Celiac and she will not be tested.  Do these people realize how short life is?  How can that piece of pie be more important than feeling well?  :huh:


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