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TLAIR0468's Photo TLAIR0468 Posts: 9,687
3/16/10 11:06 A

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Jen, I second what FoxxyRoxxy said. I have a few little issues to deal with, but nothing that causes constant pain. I sometimes get into a pity party for Tammy. Then I read your story and I think to myself 'Tammy needs to suck it up, put on her big girl panties and get off the couch!' So thanks for sharing with us, being an inspiration to us and (hopefully) sharing that recipe on this thread!

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Tammy
Missouri

"Tenacity is the quality displayed by someone who just won't quit -- who keeps trying until they reach their goal. Anything really worth doing takes persistence, perseverance, and stubborn determination! I AM a Tenacious Jungle Tiger and these are my survival skills!!"

The best inspiration is not to outdo others, but to outdo ourselves.
~Nike Ad

Most people never run far enough on their first wind to find out they've got a second.
~William


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LADYLUVSFALL's Photo LADYLUVSFALL Posts: 126
3/16/10 3:33 A

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Jen, you are amazing and so inspiring. I had fibromyalgia for 10 years and know how debilitating that alone can be. I can't imagine what it must be to have fibromyalgia AND your neurological autoimmune disorder. Your attitude and perseverance are just incredible!

"It's the start of living the way I really want to live"

"If you always do what you always did - you'll always get what you always got!"

"My mother used to say 'In this world, Elwood, you must be oh so smart or oh so pleasant.' Well, for years I was smart. I recommend pleasant."
Elwood P. Dowd-Harvey


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FOXXYROXXYD's Photo FOXXYROXXYD Posts: 2,377
3/11/10 1:55 P

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Hey Jen - Thanks so much for sharing all this with us, and girl, you are TOTALLY and inspiration! I am fortunate that I do not have to deal with major health issues except being overweight. I have always KNOWN how to fix it but have just been too lazy to until this past year. Even now there are days when I'm like, "Eh, why am I doing this"? It would be soooo very easy for me to slip back into eating badly and not exercising.

And then I read stories like yours - someone who is dealing with real challenges and still you are out there DOING IT! You are AWESOME! Thanks for motivating me!

Now my burning question for you is....
Will you share your recipe for Kansas City Style BBQ with me? emoticon

Edited by: FOXXYROXXYD at: 3/11/2010 (13:56)
FoxxyRoxxyd
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JENQUEENOFCHAOS's Photo JENQUEENOFCHAOS SparkPoints: (0)
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3/11/10 1:40 A

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Ok - y'all have made me blush now - and that is hard to do because I have a very high opinion of myself, but motivating, I don't know... I'm whiney, and grumpy, and I can be a cry baby if I don't get my way...

Hi Noha,
Thanks for your questions.

I was wondering what are your hobbies?Do you like reading?watching T.v and if so what are your favourite shows???

I learned to knit a couple of months ago and I am working on 2 baby blankets (1 pink, 1 blue) because we have learned that our oldest son is going to make us grandparents this year.
I love to read. So far I had finished 10 books since the first of the year; I read a wide variety of things - non-fiction, memoirs, historical fiction, novels, biographies, essays. I also belong to a bookclub with a bunch of women from my church - we read one book & meet monthly to discuss it and have a big potluck lunch - it takes a good 3 or 4 hours for bookclub!
And I LOVE tv - mine is on 'round the clock. I DVR my favorite shows to make sure I don't miss anything. My tastes there are as eclectic as my reading. Currently I am really into Meteorite Men; Ruby; Big Bang Theory; Kitchen Nightmares (or anything with Gordon Ramsey because I have a huge crush on him!); Private Practice; Desperate Housewives; House; Survivors (on BBC) - and a whole bunch more.


Inch by inch life's a cinch,
Yard by yard life is hard!



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NOHA_ALEX's Photo NOHA_ALEX SparkPoints: (87,825)
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3/10/10 7:18 P

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Hi Jen It is an honour to know a motivating persistent character like you emoticon

I was wondering what are your hobbies?Do you like reading?watching T.v and if so what are your favourite shows???

Noha

EGYPT( EST+ 6 hrs)

"Excuses are the nails used to build a house of failure"



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JENQUEENOFCHAOS's Photo JENQUEENOFCHAOS SparkPoints: (0)
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3/10/10 2:57 P

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April - I live in Northern California - in a town called Paradise in the Sierra Nevada Foothills.

Nanner - I am a foodie too! I love to cook; baking is one of my favorite hobbies.
My diet bounces all over the place depending on my mood. I love Thai & Indian foods - right now I am stuck on Thai flavors.
For breakfast the last few days I have had raw fruits & veggies dipped in a mixture of peanut butter & Peanut sauce (by mixing them they make a thicker dip, better for sticking to veggies)
I also love grilled and BBQ'd foods. Now that I am out of an apartment I need to get a new smoker; I am craving good old Kansas City style bbq!
During the day I only eat easy to grab, already prepared foods - such as fruits & veggies, leftover proteins from dinner that can be made into a salad or sandwich quickly.
I cook a few big meals a week - but since there are just 2 of us we always have leftovers. I can take grilled veggies and some chicken breast & make wonderful breakfasts & lunches.
I hate pasta, so if my husband wants it I either tell him to make it himself or I make a huge batch of sauce & make freezer lunches for him.
We rarely eat the same foods on a regular basis...
Well, except for tacos - which can range from vegetarian to fish, grilled meats, or anything else we can stuff in a tortilla! They always have tons of veggies - I like cabbage & cilantro instead of lettuce.

Inch by inch life's a cinch,
Yard by yard life is hard!



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NEWFLABULESS's Photo NEWFLABULESS Posts: 978
3/9/10 11:15 P

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Jen -
You are just an amazing person. I have a close friend who was very sick for years. Besides fibromyalgia, I'm really not sure what else was going on with her but she was healed through natural holistic care and in turn, went to school and earned her own license to pratice. She now focuses on helping others through what she has lived through.
I am sure that you have inspired and helped many, whether you know it or not. I love your attitude and outlook on life. Thanks for your tips and inspirations.

Where do you live?


APRIL

Work as if it was your first day.
Forgive as soon as possible.
Love without boundaries.
Laugh without control
and never stop smiling.



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TLAIR0468's Photo TLAIR0468 Posts: 9,687
3/9/10 10:38 A

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Thanks for being so open and honest. You are amazing and I hope you realize that! Love your attitude!

Tammy
Missouri

"Tenacity is the quality displayed by someone who just won't quit -- who keeps trying until they reach their goal. Anything really worth doing takes persistence, perseverance, and stubborn determination! I AM a Tenacious Jungle Tiger and these are my survival skills!!"

The best inspiration is not to outdo others, but to outdo ourselves.
~Nike Ad

Most people never run far enough on their first wind to find out they've got a second.
~William


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JENQUEENOFCHAOS's Photo JENQUEENOFCHAOS SparkPoints: (0)
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3/8/10 7:18 P

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Thanks Cherrieruns & TLAIR!

It's so hard to work through the pain and is sometimes easier to just NOT do it...so what motivated you?

Faith was a big motivator for me. After I got through the "why me, my life is ruined" phase of grieving for my past life I started to understand that God has a plan for all of us; we may not understand it, we may not like it, but it is what it is.
My daughter was 11 when this started - and I had only been married for 9 days when I first go sick - and I was not going to give up and die. There were times when it would have been easier to just give up & there were periods of time when the pain was so intense that I wished I would die.
But through it all I always had a goal in mind - first, get my daughter to her 16th birthday, then through high school, then off to college, then engaged, then through her wedding, now my "life goal" is to be around for my grandchildren - and I want to be as active and as much fun as possible for them.
And on my absolute worst days I can still here my husband whispering in my ear, "Please don't pull a 'Love Story' on me, Babe" when we were at the university hospital waiting to see a Neurologist that saw very few patients but had agreed to take me on.
There was no way I could leave anyone who loved me so much!

What kept you motivated and how do you get yourself back on track if/when you fall off the wagon?

Wow, I fall off the wagon constantly - just ask the box of Girl Scout cookies hubby & I devoured last night!
I keep tons of family photos around my house to remind me of what is most important to me.
And I have a notebook full of cards, letters, emails from friends along with pictures that inspire me and anything else that makes me feel good. I originally started this book 8 years ago to take into the hospital with me to help me focus on something besides painful tests & I find that it still helps to look at it a few times a year.
When I mess up or fall, I just pick myself up, forgive myself and keep on going. Sort of like with the cookies last night - I knew it was going to happen, so I let it happen once and got up today with the thought that today is a new day and all I can do is move forward. So I will cook a healthy dinner tonight & be glad that I enjoyed myself when I did.

Inch by inch life's a cinch,
Yard by yard life is hard!



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NANNER2121's Photo NANNER2121 Posts: 6,163
3/8/10 5:42 P

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I'm a foodie and always like to know that my teamie's favorite foods/meals are. Also, what is your fav "go to meal?"

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.•*´`•.¸ .•*´`•.¸ .•*´Show Your•*´`•.¸ .•*´•.¸ .•*´`•.¸
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JENQUEENOFCHAOS's Photo JENQUEENOFCHAOS SparkPoints: (0)
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3/8/10 2:26 P

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Ok - now for Cherriruns' questions:

Have they yet found a diagnosis for you or will you and the Dr's focus on treating the symptoms?
Yes & No on the diagnosis; we know that I had a cold about a month before I became so ill - my immune system turned on me and started attacking my body. So I have an "idiopathic" autoimmune disorder - often they can't identify them, they have not been named yet, of the testing to identify it would bankrupt us and the treatment would not change.
The autoimmune disorder first attacked my nervous system, mostly the small nerves between the brain & skin (as opposed to the large nerves between brain & muscles) which lead to a condition called Small Nerve Fiber Neuropathy. This affects mainly my limbs & head, they always feel as if they are "asleep" and my feet are so bad that I can not tell where they are when I am walking, so I do not feel changes in the sidewalk, etc. Which is why I am supposed to use my cane!
Everytime I get sick, even a simple cold, my immune system will turn on my body once it is done attacking the illness that activated it - over the years it has gone after the large nerves, so I have lost some ability to control my legs and arms; it has attacked some of my organs...so I just have to take great care of my body and try to avoid sick people!
It's hard because people don't always get it that their "little cold" that they come to church with could be fatal to me.
Once I had the neuropathy, my pain receptors were basically turned on all the time, which lead to Fibromyalgia...which leads to a whole host of other conditions...
Blah! No fun.

Have you tried water activities to help support your muscles while you work out?
Yes, we had a pool where we used to live and I was in it from May to October when it was warm enough to use it.
I had tried a pool in my old town that was speciffically for disabled people to workout in and there wer classes - but I hated the classes & the instructors. So I went to Curves instead, until they changed their hours.


What do you do for fun?
I belong to a monthly book club; I garden; I bake; I learned to knit in November; I read many more books than my bookclub reads; and I am a tv junky - it is almost always on in the background.

Oh. gee whizz, I just noticed that I have been on the computer for an hour - and I have not weighed myself or had breakfast or taken my pills...I am off to the scales & brunch - I'll be back later!

Inch by inch life's a cinch,
Yard by yard life is hard!



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JENQUEENOFCHAOS's Photo JENQUEENOFCHAOS SparkPoints: (0)
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3/8/10 2:07 P

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Cool - a whole week to talk about me!!!! What a way to start the week... emoticon

Ok, I'll Start with Patricia's questions:

How did you find SparkPeople?
A friend of mine bought the book, then checked out the website, and then started "Facebook stalking" me until I checked it out - unfrtunately she has not set up a page or gotten as involved as I have :( I would love to keep up with her this way - we moved an hour away & hardly get a chance to see eachother now!

How did you choose your SparkPeople ID?
That was an easy one! It's my Facebook ID; my chronic pain support group ID...
A few years ago a friend & I were joking about how I had gone from being one of the most super organized women on the face of the earth when I was working to a woman that has no clue what day it is, where her children are (ok, I only forgot DD had gone out of town on swim meets a few times and called her yelling about being late) and have managed to get so scattered that I can not find my shoes, keys, or checkbook when I want to leave the house.
Hence, "queen of chaos"

What are your weight loss goals?
I would like to loose the final 30 lbs of the 80 that I gained when I first got sick - but while weight loss is important to me, I am more focused on health. I would rather weigh 30 lbs more than I want and feel great than weigh less and not be functional.
I'm not thrilled at being a size 16; but I can live with it.

What was your breaking moment, that made you say, you have to loose weight or else?
This is harder - I lost 40 lbs in the last 10 months without trying or thinking about it; once I got to that point I decided that I could loose the final 30 if I put my mind to it.
I was thrilled to weigh 200 at my daughter's weddding, but I did not like how chubby I looked in photos, so I thought I'd see what I could do about it before she starts a family & I end up in a lot more photos!

Inch by inch life's a cinch,
Yard by yard life is hard!



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TLAIR0468's Photo TLAIR0468 Posts: 9,687
3/8/10 9:11 A

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Hi Jen! I second what Cherrieruns has said...amazing job making your recovery! It's so hard to work through the pain and is sometimes easier to just NOT do it...so what motivated you? What kept you motivated and how do you get yourself back on track if/when you fall off the wagon?

Congrats on being 'on the podium'. I've enjoyed getting to know you through your blogs and look forward to getting to know you a little better on this thread!

Tammy
Missouri

"Tenacity is the quality displayed by someone who just won't quit -- who keeps trying until they reach their goal. Anything really worth doing takes persistence, perseverance, and stubborn determination! I AM a Tenacious Jungle Tiger and these are my survival skills!!"

The best inspiration is not to outdo others, but to outdo ourselves.
~Nike Ad

Most people never run far enough on their first wind to find out they've got a second.
~William


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CHERRIERUNS's Photo CHERRIERUNS Posts: 261
3/8/10 7:41 A

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Morning Jen ~~ I want to first comment on the tremendous determination and focus you have had to get yourself back to moving. Going from a wheelchair to cutting shrubs is amazing. Welcome to the Podium!!!! My questions....

Have they yet found a diagnosis for you or will you and the Dr's focus on treating the symptoms?

Have you tried water activities to help support your muscles while you work out?

What do you do for fun?

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TX.PATRICIA's Photo TX.PATRICIA Posts: 36,180
3/8/10 7:10 A

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This week . . . “On The Podium” will be . . . .

JENQUEENOFCHAOS

You can check out here sparkpage here:
www.sparkpeople.com/mypage.as
p?id=JENQ
UEENOFCHAOS


Feel free to ask your questions, I will start off by asking:

How did you find SparkPeople?

How did you choose your SparkPeople ID?

What are your weight loss goals?

What was your breaking moment, that made you say, you have to loose weight or else?

If you would like to sign up for “On the Podium” see this thread:
www.sparkpeople.com/myspark/team_mes
sa
geboard_thread.asp?board=0x33779x295R>43749



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♥«´¨`•* Patricia *•´¨`»♥
.¸.•*..(¸.•*´♥`*•..)`*•.¸.

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