Thursday, August 23, 2012

a "why me" moment

On the way home from our date last week I had one of my moments where I wished things were different with my health.  It's been over 3 1/2 years since I have been able to run around on the beach.  Its been over 3 1/2 years since I have been able to go for a long walk.  Its been over 3 1/2 years where a day doesn't go by and it's not on my mind.  As we were driving down the coast with the windows down and warm air blowing through the car I wanted more.  I really feel like I have accepted the disease and am grateful for all that I DO have but last week, I wanted that walk on the beach holding my husbands hand.  I wanted to walk around just like the thousands of other people were but the truth is, I just can't... YET.  I keep waiting for my prayers to be answered and all my energy and strength restored but each day that passes I can feel something sneak in me.  I'm not losing hope but I am realizing that maybe I won't get better.

My mind doesn't work like most peoples so when someone tells me that today will be the best you'll be and tomorrow you'll only get worse, I don't listen.  There is something in my mind that blocks that noise and shoots it right back out my ears.  But last week, on that car ride home,  a little bit of that voice snuck in.  So as we were driving home I told Anthony how much I wanted to do the things we used to do.  I said I was going to and I didn't care about the consequences.  He gently told me that I just can't do it right now and because I knew this, I cried.  I tried to hold it in so I stopped talking.  Otherwise it would have come full force, tears, unintelligible voice, the snot, all of it.  Anthony looked over and asked if I was crying so I nodded.  He grabbed my hand so I looked out the window, as if that was going to stop me.  It didn't.  I cried. Hard. Wiping my tears with the back of my hand saying it just wasn't fair anymore.  I really don't feel like I did anything to deserve this so why me?  There, I said it.  Why me?  I want to play.  People don't even realize the amount of energy they take for granted.

You probably don't think twice about planning out your day according to your energy level.  I have to think twice about when I am going to go to the grocery store because after that, I'm spent.  If I want to go to Target... I need to pick a day where nothing else is planned and the next day will be slow so I can recover.  I want to have swimming races with my kids.  The other day I swam across the pool and it felt so good.  The kids swam with me and half way back I wasn't sure if I could make it all the way.  These little reminders that I'm not physically strong are starting to wear on me.

We will just have to do things a little differently.  We went on a little family walk the other day and this is how it looked.

Just a little different now.
I couldn't be more grateful for my husbands love and the care he provides.

Maybe it's foolish of me to keep the amount of hope that I do but it's what I choose.  It's what gets me through the day, knowing that I really can wake up tomorrow and feel better, completely better.  Because with Him, all things are possible.


  1. I'm sorry Karen. Don't ever lose hope. You know all things are possible with God. I also know how frustrating it can be living hindered or with pain. I think you remember when I posted about my muscle knot pain, how it would affect my mood and how painful it would get off and on. This was going on for almost a year but once I was pregnant again it started getting better. It came back, but I realized recently that I haven't felt the pain at all in about a month now. I'm praying it stays away for good and I'll continue to pray for you.

  2. karen, i have tears streaming down my face. you are such a strong and faithful woman. i can so relate to holding on to that hope no matter what comes your way...i don't think it's a bad thing. you keep on fighting and holding onto it.
    you are such an inspiration to so many of us.
    the other day my mom and i were on facebook and a status of yours came up. she said "who's that?! she is beautiful!" she's are.
    praying for you and wishing you happier days than sad.

  3. You are right... with HIM all things are possible.

    "But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed." Isaiah 53:5

    You are healed. You are healed. This isn't a metaphor... it's a promise. Claim it. This healing is yours.

    Sending you much love and prayers.

  4. I'm saying a prayer for you right now...for peace and healing, and maybe for a walk on the beach really soon. Thinking of you today...don't ever lose hope!

  5. Your hope is never foolish Karen. It's what keeps you alive and sane and stable. Without it you never would have come as far as you have. I too have those days where I wish I were normal too. I honestly do.... even 8 years later... and I let myself have that. We're human and it's ok to feel that way. I want to go to a bar and drink myself silly and not have to worry about my blood pressure dropping too low or my heart not being able to pump the alcohol out, I want to walk around the block with my husband without having to stop and catch my breath and tell him to slow down, I want to hold little kids for longer than a second and I want to be able to eat anything I want to whenever I feel like it. I'd love to just not have to think about my health for one day. Just spend a day hiking or riding roller coasters or wakeboarding or swimming in the ocean..... all those things I can't do anymore.

    After I have my "I wish..." day I feel better and renewed and hopeful again because it reminds me that I'm happy to be alive and happy to be breathing air and petting my cat and watching a movie. I didn't die and even if I have to give up some things for escaping death... it's all worth it.

  6. girl, I think about you and your health often and you have actually been on my heart a lot lately. I just know there is freedom and complete peace for you, and i think you have already tasted it. You are so inspiring and encouraging. God is using you...the hope AND the tears. I love you friend!!

  7. It is never foolish to hope. Sometimes it seems like hope is all there is to hold onto and our hope and faith is what pulls us through. I admire your strength and honesty. It's great to acknowledge that yes, it does suck, and ask why me? Sometimes we never understand why but miracles happen everyday and cures and new medicines are found. I will keep hope for you and say a prayer now. :)

  8. I just found your blog today looking for a recipe for chicken tortilla soup. I can't tell you how much your hopefulness and the obvious love you have for God and the seemingly small things in this world (the ones that matter like feeling sand underneath your toes) moved me.

  9. You don't know me, i'm Beck's sis-in-law, found your site through hers and have been reading your blog for a long time. Every time i've heard this song over the past year, you for some reason immediately come to my mind. I've been meaning to tell Beck that this song makes me think of you, but i thought i'd share it with you instead. Hope you're finding rest this week.


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