Thursday, September 22, 2011

Mitochondrial Awareness Week

It's Mitochondrial awareness week so I wanted to have a little post to bring awareness to you all.
Think back to biology class when we apparently learned about mitochondria {those things that are responsible for producing most (90%) of the energy that's needed for our cells to function}  I say apparently because I don't remember much from biology except that my bff was in the class and we passed notes the ENTIRE time.  Anyway, when you have a mitochondrial disease it can shut down some or all of the mitochondria, cutting off this very important energy supply.  Since it can effect one type of cell or many types of cells, the symptoms vary from each person.  Which means the doctors can not give you any kind of an answer as far as what to expect.  They just don't know yet.  Muscle and nerve cells have such a high energy demand and since they aren't getting it the result is "you become jacked up".  {Those are my words}  My personal symptoms with it include: muscle weakness {like I can't squat over a toilet anymore which is a huge deal because even though my bladder needs to empty itself every 30 minutes, I refuse to use public restrooms}. I'm talking weakness where some days it's hard to hold my head up because the muscles in my neck are so weak.  I can't carry my kids or hold anything for more than a few minutes before my arms become useless and then need to recover.  Every day I feel like I did a huge workout but I didn't because I have exercise intolerance {I used to walk at least a couple of miles a day pushing a double stroller, participated in the breast cancer 3 day (60 miles) twice, and did all those crazy work out videos daily. Not anymore}  Now what do I do?


I sit and relax keeping my mind occupied with Blogs, Facebook, E-mail oh and I have 2 kids and 2 dogs that need constant attention.  So I rest as much as I can but really I am using up all the energy I have to love on my family.  Totally worth it!!

I also deal with migraines and heart palpitations (pvc's) and some breathing problems.  I've got some other problems too but I'm not going to bore you with it.

One of the days this week (I think Sat or Sun) is National Stay In Bed Day to support mito.  Since I can't remember exactly which day it is, I have decided to stay in bed both just so I don't miss it.

Wanna join me?

I have another appointment with the neurologist next month and I am hoping and praying for some more answers.  If you want to read about my previous appointments you can do that here or here.

As for now, my future is bright.  I am surrounded by love.  I see the light in life and always will.  This little disease of mine doesn't define who I am.  I am a happy person and consider myself beyond blessed for the amazing life I have had.  Not many people can say that they had the best life from birth till now, but I honestly can.

I gotta tell you, I have learned so much from all of this.  I've learned so much on the value of life and love.  I pray to God that there will be a cure tomorrow and all of the ick will go away.  I promise to take the lessons I learned and be a better person.  I want to be there for my kids when they grow up.  I want to play hard like we used to.  I want to jump rope.

29 comments:

  1. Awwww, I just wanted to say the cute little Possum that's eating your doggy food, is totally harmless! We rescue them.. from people that shoot mommy's and the babies are left in them or mommy dies in road by cars, blah blah. But if you were to have one as a pet, you would fall in love! They love cuddling with dogs, well the possums we've had.. Just leave it a little scoop of dog food off the deck.

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  2. praying they find a cure. in the mean time i would love to stay in bed to support mito.
    xxO

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  3. Aww Karen, such a sad but beautiful post all at once!! I hope they find a cure and I hope one day you can jump rope again...You sound like a wonderful, inspiring woman and mother to your children, always thinking on the positive side.
    And btw, if my bedroom looked as pretty as yours I wouldn't be leaving bed either ;)
    Have a great day whatever you may be doing...xo

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  4. You are in my thoughts! It sounds like you are going through a tough battle, but that your positive outlook and love of life will get you through it and anything else that comes your way! Enjoy yours days in bed, I recommend some ice cream, cookies, or a donut while you are there. That is my favorite way to brighten a relaxing day :)

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  5. What a great post!! Although dealing with such an issue is difficult at times I'm sure, it sounds like it has made a stronger, better person :)

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  6. Glad to have an understanding of what you are dealing with. I am a good friend of Jess Hunters and she passed along your blog, of which I am so glad so that I can share in your journey. I have recently experienced the power of prayer in my son's life, as he was diagnosed with a brain tumor on Aug 7th and has been hospitalized since then.(he's doing great) We should never underestimate the power of prayer, and I'll be committed to praying for you. -Kara Ryska

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  7. Thanks for sharing...I remember once you told me even smiling is hard to do, because your muscles get tired so fast...that smiling is painful. But yet you still do it all the time! Just like you said Mito doesn't define you, just by smiling you prove that. I have no doubt you will jump rope again.
    As you know you are in my prayers daily.

    XOXO

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  8. Thinking of you, Karen. We need to reschedule a visit, my former roomie!

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  9. This is something I have never heard of. I will keep you in my thoughts on your upcoming appointment. Oh how I wish I could stay in bed just to stay in bed. I stayed in bed most of Sunday morning because I wasn't feeling well. I would have stayed longer but I heard the baby freaking out and realize my husband didn't feed her lunch- lol.

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  10. You are so positive about all of this...I respect and admire you for it! I'll keep you in my prayers, that your neurologist will have all of the wisdom in the world and will find some good answers. Hope you have a great day today:)

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  11. sweet post! praying for good results!!

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  12. my coworker had two sons both born with mitrochondrial disease. your positivity is going to be the cure :)

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  13. thanks for sharing this - i've really never heard of this. apparently, i was passing too many notes in biology as well! but, i must say, i love any cause where you get to stay in bed all day! prayers your way :) i hope they find a cure!!! much love!

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  14. That would be so hard! You are such a strong lady! Love how positive you are!!! love the cozy bed!!!

    sending Luv your way!!!

    Pieces of Luv

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  15. Thanks for sharing. It is so easy to imagine that people with beautiful blogs don't have rainy days. Will be praying for wisdom for your doctor(s). Love your grateful attitude.

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  16. Just wanted to let you know that I am thinking of you. ;)

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  17. praying for you. praying for the doctors that you see. for wisdom, proper treatment and a CURE!!

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  18. apparently i was not listening in biology either... it was at 8 am and im sure i was out of it and daydreaming half of the time ;)

    i had never heard of this disease. you have a great attitude and im sure jumping rope is in your future! i am following now following your blog and looking forward to reading more- thanks for sharing your journey!

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  19. Oh Karen... this really tugged at my heart. I am always thinking and praying for you.

    You are an inspiration.
    Helps me appreciate my little family even more too.

    ♥Jazmin

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  20. hey karen, i love your positive outlook! it sounds like you have a great family to support you. you will be in my thoughts and thanks for bringing awareness to mitochondrial disease...i have never heard of this before.

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  21. I didn't know any of that, so really thank you for sharing! And I really love that wall decal!

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  22. Karen: I had not heard what your final diagnosis was. Your grace and sense of humor is inspiring. I will keep you in my prayers and hope to see you and your beautiful family soon.

    Karen Gebhard

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  23. you have a terrific outlook karen thank you for sharing with us more about what you are experiencing and educating more on this disease and the importance of mitochondria i'll be praying for some answers at your next doctors appointment!

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  24. Wow, thanks for sharing so honestly about all of this!! You have such a great attitude! I'll be praying that you get some more answers!

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  25. It sounds like you are taking the time you need to relax! Here's to God giving continual strength and guidance!

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  26. This post sounds like you were in my head and wrote just exactly everything I'm thinking. My days look like that too... I can really relate... I can only walk 30 mins on the treadmill for exercise and only at a speed of 2.0 mph, I can't lift more than 5 pounds ever, my chest hurts if I go up stairs, I get short of breath often, I'm dehydrated more often than not because of my meds so I always feel hungover.... on and on..... oh I wish you lived next door. We could keep each other company!! :)

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  27. How did I miss this one???
    It's all gloomy here today & then there's You 'a little ray of sunshine!'
    Oh...that we all had your attitude!
    God please give me a grateful heart like Karen! :)

    You are LOVED! And in my prayers!!!

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  28. I probably have heard the name of this disease but honestly had no idea what it was. Thank you for enlightening me, now I know how I can pray for you!

    None of us knows what the future holds for us, but we do know the God who holds the future, and so we are safe in His care.

    God's glorious plans for you INCLUDE your disease. So you can know that whatever He has for you to do each day, you will have the strength and energy to do it.

    What a precious heart you have. Thank you for sharing your joy with the rest of us!

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