Thursday, June 7, 2012

let go and let God

I had an appointment down at UCSD this week with the mitochondrial specialist.  To be honest, I went in thinking it would be a waste of time, feeling like there really wasn't anything we would get out of the appointment.  My symptoms feel like they have stabilized with dare I say it... even some of my energy returned.  I have been doing a great job at adapting to this new lifestyle and doing an even better job and just ignoring that I'm sick and just living my life.  It's working out pretty well for me so far... until I try and do something I used to be able to do.  We parked in the parking structure and walked quickly into the hospital.  I had to go to the bathroom so bad I didn't care how much energy the speed walk would take.  I barely made it to the office without feeling like my legs were going to give out on me which made me realize, once again, I haven't actually gotten any better physically.  I have just slowed down and not made many outings without my chair so when I think I have more energy it's just that I am saving more energy. This has given me more stamina to get through the days which help trick my mind into thinking I am improving.  Whatever works, right?
Once we saw the doctor and nurse practitioner we received some of the results from recent {6 month ago} labs.  Good news was I don't have some crazy disease they thought but that meant the big answer is still a mystery.  The doctor tried explaining about the genetic mutations that showed up in the tests and what they mean which seemed to make a little sense so I nodded my head and when he left the room our nurse practitioner {whom is super awesome} gave us a much better explanation.  Next step now will be to do some nuclear testing.  {Not as in nuclear weapons} They are thinking that the mitochondria are diseased because of a problem in my nucleus.  This will most likely result in another muscle biopsy in the near future and hopefully a nice clear answer.  Guess what though, the mutations I have are extremely rare.  Less than .2% and .1%.  There aren't too many other people walking around out there like me, or rolling around.  This does however make diagnosing and a prognosis very difficult.  This is where my awesome nurse practitioner gets even more awesome.  She told me how from the very beginning their goal is to keep me comfortable, treating each symptom and making sure I live my life to the best I can.  They also want to get as many answers as they can for the sake of our kids.  She told me that this is where I need to let go and let God.  God brought my children into this life for a reason and it is not my job to stress everyday and watch over them like a hawk.  {Anthony must have told her I was doing this}  The added stress will make me worse and there isn't any good that would come from it.  They are constantly making new advances in medicine daily.  It has not frozen and we have so much hope for the future.  I cried a little at this point, we talked a little more and then we left.  Faith, Hope and Love is something that we will NEVER lose!!!  I know I said this before but I have so much good stuff going for me.  I am grateful for every single day!

16 comments:

  1. Karen, such a tough time you are going through with this unknown disease. The nurses wisdom is the easiest to understand but hardest to put into practice! I'll be praying for that to sink in to your heart so you can trust God with the future of your family, and your own future as well!

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  2. Girl praying for guidance in this area, but you are SO right...faith hope and love is something we will NEVER EVER lose!

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  3. You are such an inspiration to me. So real about sharing your hopes for a brighter future! The LORD is using you in so many ways. Thank you LORD for your awesome nurse practitioner. You are so blessed, Sweet Friend, with a most adorable and loving husband. AND even more adorable loving children. I love seeing you all interact, so sweet. Praying for you daily and whenever the LORD brings you to my mind. love you much, Dotty

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  4. I read all of your posts and never really know what to say, so rarely comment. But I just thought, why should that stop me! I'm inspired by your courage and faith and determination to just live your life 'normally' even if you have to make adjustments in order to do so. Best wishes, sarah.xx

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  5. It's always difficult to deal with something when there is not a clear-cut answer or prognosis. I'll definitely be praying for you and all that God is doing in your life! I think it's amazing that you were able to speak about your faith with the nurse practitioner- that's such a blessing!

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  6. Karen, your strength and passion for life is so inspiring and beautiful. I think of you so much and pray for you each day. I'm glad your appointment went better than expected. Your nurse practitioner sounds like an honest and wonderful person.
    My mom always says "let go and let God" and more and more I'm learning that truly, that is the best way to let go. Sending so much love your way! And wishing you a wonderful day with the ones you love.
    Xoxox
    Maria

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  7. it sounds like God provided that nurse practitioner for more reasons than just to help with the health aspect of your life. it is incredibly hard not to worry, not to want to have complete control and not want to know how everything will turn out. i'm glad to hear the results came back it wasn't the disease they thought but still a mystery praying for you karen

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  8. I have said this before but I have the biggest problem letting go and turning it all over to Him. You are inspiring that you can do it and remain so positive through all of this. Send prayers and love your way!

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  9. Looking forward to seeing you soon. Love, Amara

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  10. Letting go and letting God...I need to be reminded of that often. Glad your chair is giving you more life and answers seem a "little" closer.

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  11. What a blessing it is when drs and nurses treat patients like...real people! Sounds like a very worthwhile appt. Hopefully when they get a clear answer, they can figure out how to treat you.

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  12. How cool is it that God put someone in the medical community who could encourage you with "let go and let God?" I love that. I hope you get more answers soon and that things continue to stabilize. xoxo

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  13. That's great that it isn't the disease they thought! I'll continue to pray that the doctors and nurses are able to give you an accurate diagnosis and prognosis that will help!! Also - I agree with what everyone said -- how awesome to get a nurse to encourage you in the Lord! You, and your blog are just as encouraging, Karen. Thanks so much. I hope you have a great week! :)

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  14. You know what Karen? I view ALL of this has good news.... something to hold onto... a ray of sunshine in this whole ordeal you've been going through. I feel they are on the verge of figuring you out and that's a great thing. You've shown God how strong you are and now you can begin to reap the rewards in whatever form they come (big or small). I'm pulling for ya!!

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  15. hey you! just want to let you know i've been thinking about you and praying for you, beautiful lady! i hope the mr had a wonderful father's day and you're enjoying the new week! <3
    xoxox
    maria

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  16. sounds like that nurse of yours is one sharp cookie. ;)
    i enjoyed your testimony and i'm glad God has given you a peace about some things.
    (He is ever faithful to us if we place our trust in Him -- a fact i'm learning to a deeper degree at the moment, BUT there's no safer, happier place than in the palm of His hand)
    nice to see you again beautiful lady. hope you are having a fantastic summer!!!!!

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