Sunday, January 6, 2008


Ever just want to quit? say enough is enough? go on strike? had it up to here? those of us dealing with these diseases, we're not living and we're not dead. don't belong anywhere.


  1. From one lyric lover to another I think you really need these lyrics right now, also by Rich Mullins

    Well, sometimes my life
    Just don't make sense at all
    When the mountains look so big
    And my faith just seems so small

    So hold me Jesus, 'cause I'm shaking like a leaf
    You have been King of my glory
    Won't You be my Prince of Peace

    And I wake up in the night and feel the dark
    It's so hot inside my soul
    I swear there must be blisters on my heart


    Surrender don't come natural to me
    I'd rather fight You for something
    I don't really want
    Than to take what You give that I need
    And I've beat my head against so many walls
    Now I'm falling down, I'm falling on my knees

    And this Salvation Army band
    Is playing this hymn
    And Your grace rings out so deep
    It makes my resistance seem so thin


    You have been King of my glory
    Won't You be my Prince of Peace

  2. Yes, it would be nice if we could have some respite from these diseases and live like we used to before them! Sadly, we have to die first! At least you know there is no suffering where you are going!

  3. thinking of YOU, my friend and sister. And praying for you, too. And yes, I also know what you mean. Thankfully, these times pass and we again are aware of the beauty that we are a part of.

    love you!

  4. Sometimes I think that God has opened the doors to His own private comedy club. At least we know we are among the strong. The Lord will only give us what we can handle, and what we deal with daily would kill any ordinary person. (That is not to say there are days I would rather meet Jesus than wait for His time.)

    God Bless you Sister!!

    And Goddessonwheels... I LOVE that song!!!! Knowing He is holding me is what gets me through some days.

  5. Oh doll... YES, we all have... and yet, usually we make the choice to keep on plogging thru... He is there to carry you when you can't carry yourself... know that!!!

    It is not your time yet... you have a mission here on earth, lots more to do!!!

    Smoochiedoodles (thanks Whims!)

  6. Yes, Keesha I certainly do have my days when I want to give up. These (as you have called them) "weird ass diseases come thundering into our lives and do not just affect us, but our children, our marriages, and our loved ones! Watching them suffer and worry at times is tougher then the pain I know I go through myself. But this has also made me a much stronger person and I know I can not give up, I need to stay around and fight and help the doctors learn so hopefully it will be easier for my children.

    I know you have been through a lot and you have give a tremendous amount of support to others. I am sure you have a team of supporters but I just want to let you know you have one more, if you ever need a listening ear, well im here.

    Take care of yourself and I hope these bad feelings pass quickly.

  7. I've never commented on your site before, but I read and this post struck a nerve. I just want to quit life today and yet, I know I can't. And while my situation can't hold a candle to yours, I do feel that frustration. I know it pretty intimately.

    There has to be relief somewhere because this has to be a part of a bigger plan, a bigger scenario, a bigger purpose. It just has to be.

  8. Hi Keesha. I just want to encourage you that your information campaign is going well.

    One of the girls in my nursing study group mentioned to the class that she had brain surgery.

    I asked her about it in our meeting today and the first thing she did was show me her scar. It looked a lot like yours.

    I asked if it was Chiari 1 Malformation and she said it was. Then I had an intelligent conversation with her about the other groups of diseases that are associated with that.

    It was cool that I already knew about such a weird-ass disease!

    Then, we had more general conversation about the nature of health care, going through a big disease, etc. She is a cool girl, just like you!

  9. Hi Keesha..
    I just want to say..that I too have my days on the couch with the tissues..we all do..and some times I just have to say " tomorrow will be a new and better day"..because it will be one more day that I will spend with my children.. I call it "my pity party"..and then I move on..if we dont choose to move on..we stay right where we are..and I know I would not want to stay in those seem to be a very compassionate and encouraging woman...but even the quarter back needs cheerleaders.. I hope you wake up feeling better..

    "Dont deny the diagnoses, just defy the symptoms that come with it" Norman Cousins

    I have that posted on my soon as I read it.. I knew it was my new motto..

    Love your sister chiarian/cheerleader...Dee