Tuesday, April 24, 2012

testimony


I spoke at our MOPS (Mother's of Preschoolers) meeting at our Church last week.  Every year the mentor moms put on a beautiful Tea and Treasures party for us filled with delicious food, fellowship and speakers.  This year, I was one of the speakers and I was so honored to get up in front of my peers and tell my story.

Here is my testimony:

***************




Life as I knew it changed 3 years ago.  I won’t say it changed for the worse, it just changed for the different.  The life that I thought I had planned out was a little different than the life He had planned out.
As I sit up here and talk to you today most of you would be surprised that anything could possibly be wrong with me medically.  I look healthy and everyone says I look fine so I must feel fine, but I don’t.
November of 2008 I walked in the Breast Cancer 3-day with some of my best friends.  I recovered quickly from the blisters and pulled muscles and signed up to do it again.  
The next year, November 2009 I walked with my husband.  I hadn’t been feeling that great the week before but by the time the walk came I was ok.  
The first day of the walk, I injured myself.  First my hip, then my knee, then my shins.  Each step I took, I was experiencing excruciating pain.  I kept walking.  I knew that my mind was stronger than my body and I could get through it.  My husband and I joked about the fact that they were just injuries and it wouldn’t kill me.  We kept walking.  
Hand in hand, all 60 miles, we completed the walk.  
A month later I was still not recovering from the injuries so I went to the doctor.  
2 months later I still wasn’t feeling better so I went back to the doctor and the journey began.  
I saw many different specialists and had many different tests ran.  Nothing was matching up or giving us clear enough answers to what was going on.  
I finally had a muscle biopsy done in August of 2010.
I went to the post op appointment with the surgeon alone.  I assumed everything would be fine because from what I read, it is really hard to get any answers from muscle biopsies.  It is a complicated process and everything has to be done precisely... many steps were involved in getting that piece of muscle down to UCSD at the perfect temperature in a timely manner.  The surgeon even said nothing would show up because he was certain I had MS.
The doctor looked at the results and from the look on his face I immediately knew something was up.  He explained that my muscles were dying and atrophying because my nerves were dying.  He couldn’t give an explanation as to why this was happening so he said I needed to see my primary care doctor right away so I could be sent to a neurologist.
I took this new information and sat in the parking lot on the phone with Anthony, my husband and that’s when it all hit me.  
I was crying with him on the phone trying to explain what the doctor had just told me and all I could say was something is wrong.  I told him there are 3 things going on... type II atrophy something, and something else, something’s dying.  I can’t remember.  That was a hard moment for the two of us to not be together for.  That was one of many moments that I was brought to my knees.
At that point, I had been sick for 9 months but didn’t know why.  Now I was getting answers and they weren’t the kind that came with fixes.  I saw my doctor that next day and he was just as perplexed.  
The neurologist I first saw sent me to UCSD to someone that he would trust with his own family members.  He knew he wasn’t the one that was going to be able to help because this wasn’t his area of expertise.  I needed a rare disease specialist.  At that point we started calling it an exotic disease, it sounds much sexier.
Next step was a nerve conduction study. They stick needles into my muslces and make me hold a position to stress the muscle.  The needles were great, holding the muscles was miserable.  
When Anthony and I  drove to this appointment we talked about how precious life is and how important it is to really live.  
Live like you are dying.  
We were getting nervous because all along we have been praying for answers and we knew we were getting closer.  We were nervous because we weren’t sure we actually wanted to know the answers.  We decided right then that if we got any bad or funky news we would take the less responsible route and plan an exotic vacation to Bora Bora.  
While I lay on the bed and 2 neurologist were conducting this test with puzzled looks on their face and saying words like abnormal, no this is not good, I had tears running down my face and I looked over at Anthony and mouthed, Bora Bora.  
Something to look forward to.  Although we have now waited too long and that dream may not be able to become a reality.
We were now given more information as to what was going on inside my body.  I have an excessive amount of mitochondria in my cells. I have a disease called mitochondrial myopathy.  
I now see one of the top mitochondrial specialist in the US down at UCSD and when I go to my appointments I feel like I am on an episode of House.  I just wish it was more like an episode of Greys Anatomy. 
The mitochondria which are inside our cells create more than 90% of the energy needed by the body to sustain life and support growth.  When they fail, less and less energy is generated within the cell.  Cell injury and even cell death follow.  If this process is repeated throughout the body, whole systems begin to fail.  
Imagine your body is a battery.  You start off charged and as the day goes on and the more you do, your charge wears out and before you know it, you are running in the red zone and then you stop working.  I deal with this on a daily basis.  Some days I wake up and my charge runs out by the time I get in the shower.  Other days it doesn’t run out until dinner time.  Those days I am so thankful for.  
With this disease I experience:
muscle weakness and muscle fatigue
migraines
slurred speech
raynauds
vertigo and vestibular weakness
complications with my endocrine system
breathing and heart problems
autonomic dysfunction which causes blood pressure and body temperature problems
It sounds scarier than it is.  Maybe because I am the one going through it, it doesn’t seem that bad.  I do get scared when new symptoms arise because then I realize it’s progressing.  I have so much hope that the disease will stop progressing and even repair itself.  Even though there hasn’t been a case where this has happened, I am eager to be the first.  I think the main reason I am not scared is because I have God.  He is with me through it all.  I know He will bring me through it.
This disease is genetic and I pray that I did not pass it down to my children.  
They are being watched and if they start showing any symptoms, they will be tested.  I don’t want to put them through any more than they have already been put through.  
They are living with fear and it breaks my heart.  They can’t quite understand what is going on with their mom but they know.  
They know I’m fragile, they know we have had to change our lifestyle and they have not once complained.  
My daughter prefers to stay home and take it easy with me and I don’t know if it’s because she just wants to make things easier for me or not but I want to make sure she doesn’t miss out on living her life.  
We played hard when they were babies, beach camping, yosemite trips, going to the river every other week, living it up.  It has all stopped because of me yet they are not mad at all.
During the past 2 years I have become closer to God than ever before.  I have always had a strong relationship with Him but getting sick has helped me see the light.  
I see beauty everywhere I look.  I find joy in everything I do.  To me, everything is a sign from Him. 
He is everywhere with me and I couldn’t be more grateful. 
I am not walking alone.  
Even when I have those moments that are so dark and scary, He is there to lift me up.  I know He will always be there.  
Faith is the one thing I have not lost. 
I have been blessed beyond belief.  More positives in my life than negatives.  More ups than downs.  More light than dark.
God has provided me with great doctors.  The nations top doctors right here in San Diego.  That in itself is a blessing.  He has provided me with an amazing family that cares so deeply and is so supportive. He has even given me neighbors that are always there for us as well.
Having something like my health taken away from me has given me strength in other areas of my life.  I love more passionately, I have more patience, I can see clearer, I have a deeper appreciation for life and am extremely grateful for the love, and friendships that I am surrounded by.
I don’t know what kind of future I have in store for me, but realistically, no one knows.  Only He does.  I love my life and pray that I can stick around a little longer.
I am also not afraid to die.  I know where I am going and who I will be with.  But for a long time I was to afraid to admit that.  I felt that if I admitted it, then He would feel He could take me now.  I am not ready to go now, I have a family to raise.  So for now, we will live a life of love and joy and live for Him.




20 comments:

  1. Aw Karen. I continue to pray for your healing. You have such a positive spirit

    ReplyDelete
  2. Absolutely extraordinary testimony, Karen. We'll be praying for God to continue to draw you close to Him and heal you. Thanks for being a light to the world.

    ReplyDelete
  3. how precious this is....definitely big tears.Much love and many prayers.

    ReplyDelete
  4. I am always so inspired by your positive outlook on life Karen! What an inspiration you are!! Thank you! XOXO! <3

    ReplyDelete
  5. Karen you are such a beautiful person on the inside and out. Love your faith, your testimony and I too, believe and pray for your healing. :)

    ReplyDelete
  6. what a beautiful testimony! you are such an inspiration! thank you for sharing your story. :)

    ReplyDelete
  7. This was such a wonderful testimony, Karen.

    ReplyDelete
  8. I wish I could have been there, Karen. This was beautiful.

    ReplyDelete
  9. You are a beautiful woman Karen. You are positive and strong. Thanks for sharing!

    ReplyDelete
  10. Karen,
    Your story is an inspiration!
    Thank you so much for sharing, and being a light to others!
    Lots of love to you,
    Maggie

    ReplyDelete
  11. Thanks for sharing, I bet the ladies at tea loved hearing it, what an inspiration. You are so amazing Karen, there is probably not a day I don't think and pray for you. Everytime I drag my 'tired' self up the stairs, I think to myself...,"you think your tired, imagine how Karen feels right now and she's got a bigger house and more kids! (then I suck it up and say a prayer for you). When I am working out and enjoying it I think of you and how much you would love to be able to workout too...and again I pray.
    Thank you for always reminding us to enjoy life to its fullest and see beauty in all things.

    XOXO

    ReplyDelete
  12. i have tears streaming down my face. karen, from the moment i started reading your blog, i knew you were an beautiful woman inside and out.
    thank you so much for sharing such touching, raw and true words with us.
    i love that you said that faith is the one thing you will never lose.
    i say that all the time.
    though some days i fee negative and sad, i know that god has a plan and i know in his time things will happen just as they should.
    you are such an example of strength and happiness. i love your passion for life <3
    keepin' the faith right with you!
    xoxoxo
    maria

    ReplyDelete
  13. What an amazing post, Karen! You are such a inspiration to so many people... I definitely feel blessed to know you through your words on this blog. We are all praying for you!!

    PS Your family is absolutely GORGEOUS!!

    ReplyDelete
  14. What a blessing you are! Thank you from the bottom of my heart for sharing this. And thanks for linking up. xoxo

    ReplyDelete
  15. oh my goodness...what a story! maybe you are meant to be the light for others...others who are so scared and afraid and lonely....
    when I see the people in the pews at daily Mass...every day.. praying, thanking, offering...I know them all personally and know all their struggles..their faith is amazing...everyday..
    good luck on your journey!
    I am your newest follower..pls follow back if you can.

    ReplyDelete
  16. this was beautiful Karen. I thought about something while I was reading it.... that maybe this is God's way for you to fully and truly LIVE. It's how your soul is growing and how you are truly seeing what God has offered to us all. Your story should be a wake up call to everyone out there.

    I'm hopeful that since you are aware now of the beauty and joy and greatness on Earth that your disease will stop progressing and you'll go into some kind of remission or that someone will find a cure.

    I'm praying for you!

    ReplyDelete
  17. I love you Karen and your beautiful heart and testimony to God's grace at work. Praying for you and your family.

    ReplyDelete
  18. Thank you for this. We are going through some tough stuff right now and your positive attitude inspires me to change my perspective. You are a special, and very brave, woman!! I wish you many years of health and happiness, and hope you WILL BE the first recovery!!

    ReplyDelete
  19. I am new to the bloggy world and love coming across new blogs....Thank you so much for sharing your story with all of this....You have such strength and courage in doing so....I can only wish that each day is great for you and that you are able to continue to share that joy and love in your heart with your husband and children...You are beautiful :) xxoo

    ReplyDelete
  20. That is a beautiful testimony, your faith sustains you and I love that you are finding joy in absolutely everything. I wanted you to please check into ASEA, it was shared with me over a year ago, and it has been amazing. It is the worlds only lab replicated Redox signaling molecules which is the same thing that our cells have and create in our bodies but with illness, stress that comes with attacks on the body and age, we make less and less and the cells are being destroyed with the illnesses the body acquires. I am a distributor because it works and I buy it at cost and share it with people. I am not pushing a product for the profitable gain of it, but for the change and the good it has brought to my life and so many others who have discovered it. Please this may help your disease. www.caprecia.teamasea.com, my email is capreciaz@yahoo.com if you want to talk more privately about it. But please go to the website and watch the videos, science has discovered this, they have studies that back up what it does and thousands of people with incredible testimonies with severe illnesses they were dealing with that have improved greatly and they have recieved back part of their life as they once knew it. it is safe it has no complicatiosn with medicine or treatments with doctors. Thank you for your blog it is so inspiring and your family and words are beautiful. blessings, caprecia

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...