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

[GottaSki]

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

[Adalaide]

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. 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.

[IrishHeart]

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.  

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)   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.  

[bartfull]

  "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.  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.

[GottaSki]

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.

 

Right back at you

[IrishHeart]

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.

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.

 

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

[nan42]

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

[GottaSki]

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

[nvsmom]

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. 

[CaliSparrow]

Thank you!

[GF Lover]

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 

[IrishHeart]

Ok, now you've made me cry. 

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!

[Gemini]

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! 

[IrishHeart]

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

 . 

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

.

[Gemini]

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? 

[Gemini]

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

Nancy....you might actually find that gluten is the aggravator of your MS.  It might be that you have had Celiac for years and did not know and ended up triggering for MS because of all the gluten ingestion.  When you are eating food that is activating your immune system and causing inflammation, that is one of the reasons you start to pop with other AI diseases. The immune system does not just stop with your small intestine.  I have 4 AI diseases and they have all gotten a lot better since I went gluten free.  They are still there but the symptoms are far less acute.  My cousin has MS also.  She moved to Florida and I don't have much contact with her but she was always very, very thin, like me, so I suspect she may have Celiac also.

It's not co-incidental that Celiacs often have many other AI problems.

[IrishHeart]

My friend with MS adopted a grain free diet back in 1987 (this was all her "radical" idea back then) when she was DXed.

That woman is in better shape than anyone I know, keeping her MS at bay for 25 years. 

 

Do we both think she was probably a celiac? yup. Inadvertently, she has kept her MS from progressing

that much and I think she's amazing!

[mushroom]

Do we both think she was probably a celiac? yup. Inadvertently, she has kept her MS from progressing

that much and I think she's amazing!

 

I wouldn't exactly say inadvertently    I think I would say she has been instrumental in keeping it from progressing, just as I think that my gluten free has been very instrumental in keeping my PsA at bay.  My rheumy can't believe that I take only an occasional Humira shot (like every six months or so ) now.  He is totally mystified   because "diet has nothing to do with it"

[IrishHeart]

Oh, I most definitely think it has helped her directly.

 

It's my friend who says "inadvertently" because she was not really thinking about the gluten connection at all when

she started this "diet" 25 years ago. She did it, in fact, as part of a diet with OA (over-eaters anonymous) to lose weight

and to control her carbs and sugar intake and in conjunction with her recovery in AA. It worked out so well, she kept at it.

 

She took control of her life through her diet. But you're right, no doctor would have thought it possible.

She sometimes has to do the interferon and some meds , but all in all, she has done amazingly well with symptom management.

 

As we say to each other, neither of us is in the wheelchair some had suggested we would need. (Not yet anyway, touch wood!)

[GF Lover]

When I go to "The Chair" I'm going straight for the Hover Round thing.  Beef up the motor a bit, add some side bags and strap a cooler in back to store my gluten free snackies.

 

Colleen 

[GF Lover]

OMG!  I just realized I am over the 1 year mark being gluten free.!  

 

Maybe the brain fog just lifted this morning?

[GottaSki]

Happy Belated First Birthday Colleen

 

I'm too stubborn for the stinking chair 

-- at least I was at age 45 and 47

-- might be fun in a few years

 

-- we can race them to the dinning/party room for L2T's scrumptious dinners

[Adalaide]

Happy Belated First Birthday Colleen

 

I'm too stubborn for the stinking chair 

-- at least I was at age 45 and 47

-- might be fun in a few years

 

-- we can race them to the dinning/party room for L2T's scrumptious dinners

 

Yes, happy birthday!

 

And I think we should all get chairs. We can mod them and have a little race track next to the walking path so we don't mow anyone down on our way to eat. First one there has to set the table, last one has to clear.

[IrishHeart]

.....and mine will have pink bike streamers and an old fashioned horn that goes "ARUGala, ARUGala!"' that's how I wanna roll.

 

 

gotta say it....the development where I am going to live in FLORIDA has the flat, level ground we need to do this sort of racing around on wheels....just sayin...but if'n we have to go to the cooler temps come Spring and summer for our peeps with heat intolerance and allergies, we'd better start mapping out some spots.

[mushroom]

..but if'n we have to go to the cooler temps come Spring and summer for our peeps with heat intolerance and allergies, we'd better start mapping out some spots.

 

Mendocino coast in CA is pretty kewl.  But I don't know anybody there