Wednesday, May 28, 2008

Still here

First off: Linda/The Road I Travel--could you please email me? I would very much like to know how you are and I can't any longer (read your updates). Thanks!

Thanks everyone for the thoughts, prayers, and thought-provoking points left as comments to my last post.

Obviously I am still here. I admit, I am struggling. If it was any ONE problem I was dealing with, it would one thing. Dealing another entirely. My life being taken over by so many seizures a day is ridiculous, with the unbelievable pain it is causing.

My pain scale norm, pre-seizure disorder, was around 7 on good days and 9 on bad. Now, I'm 9 on good days. I'll leave it at that.

It took me 2 hours to stand yesterday to get myself to the restroom. When I finally made it there and sat, I screamed out in pain.

If you know me, you know very well I pride myself on keeping pain to myself. And I actually, who had an emergency c-section with no drugs and never made a sound. Not a cry, a shout, a whimper, nothing.

Fortunately I got my scooter back in the afternoon so I can ride down the hall next time.

The pain is just overwhelming still, and it doesn't help knowing that this rare combo has no future, so what is the point in holding on?

I don't know. I don't have any answers. I just wanted to let the kind folks who wrote know that I'm still here and hanging on. It's by a thread at the moment but I'm doing the best I can.


  1. And that is all that anyone has the right to ask of you...

    Unless they have walked in your shoes, and personally experienced all that you have lived through, no one can know the extent of your pain, physical and mental. And so there is no one who is in a position to help you with that decision. Knowing that there is not (likely to be) change for the better must be unbrearable, and the additional struggle of " what if I can't do it myself,later" must make that harder still.

    Is it selfish for those who know and love you to hold on longer than you feel you can?

    As a Catholic, I am not an advocate of suicide, but as a woman, a mother, and a nurse, I understand that there are some situations that are just too much for all to bear...It is such a charged issue, especially when there are children involved.

    You and your family are in my prayers daily. In addition to freedom from pain, I will now add an intention for peace of mind. Hope you stay in touch as long as you are able. (((((hugs))))) Maureen

  2. A thread has held a lot together and is good that there is something to hold on too, it can make all the difference.

    Keep hanging in there and just take each day/hour/minute as you can.

    Always here for you, Kira.

  3. Dealing w/ pain... I learned through my experience last fall that pain comes from 3 things: inflammation, tight muscles and scare tissue. The more stationary you are, the worse the pain will be and the longer it will last. When my disc herniated last September and I tore tissue in my glut/hamstring area at the same time, I was in excruciating pain whenever I sat down... to drive, use the restroom, you name it. My chiropractor encouraged me to keep moving... walking to start. He told me not to take a day off (e.g. don't ever lay in bed for a whole day)... because being stationary would actually just compound the issues. So through the pain, I kept walking, then jogging, etc. And amazingly, day by day, the pain slowly started receding. Our body heals itself best when its in motion. Motion isn't enough... we did a holistic approach to get me better... and I want to share this w/ you but it will be too hard via a blog. If you want to learn more and talk about this, I'm totally open to sharing what I learned. There is no cost at all... and I'm even willing to call you. Let me know if we should talk. I'm a christian... my work christian bible study group recently sent you a card.

  4. One moment at a time, one minute at a time, one hour at a time... its how we all live...

    Love you doll, glad you posted today.

    Hugs to you and prayers for less pain soon! like NOW would be good!!!

  5. As you know, you are constantly in my prayers.

    I use your spoon analogy often and think of you each time. You sure have a lot to deal with. I'm sure you use your spoons wisely.

    Love and hugs,

  6. You are in my prayers and I find myself thinking of you many times during the day. Thinking of things you've said that have touched me, things you've done that have made me smile. CP loves Cinderella and I found myself teary because it reminds me of you and I miss you and love you. I don't know what to say, I've lost touch, not because I don't care, please don't EVER think that. You're in my heart. Take it one moment at a time (Like Teri, I use The Spoons ALL the time too...)

  7. Hope you are doing better . Just wondering have you tried Keppra . take care

  8. I am so sorry to hear that things are not getting better yet. Life is just so unfair sometimes. You do not deserve this. But it will not stay this bad. Something has to give. Something has to get better. Can you seek out better pain management to help you through this? I'm sure you've already tried. I'll be thinking of you.

  9. Keeping you in my thoughts and prayers! Kris

  10. Keesha,
    Please seek your pastor or the help of a neuropsychologist that specializes in helping people dealing with this level of pain...we will pray for relief from the pain you are experiencing.
    Our love & prayers your friends in Phoenix

  11. Keesha,
    Please seek your pastor or the help of a neuropsychologist that specializes in helping people dealing with this level of pain...we will pray for relief from the pain you are experiencing.
    Our love & prayers,
    Your friends in Phoenix

  12. Keesha,

    Thinking of you and hoping you are doing OK. You are a strong and special person and have certainly taught me a lot about perseverence and strength when facing adversity. You are fulfilling a special purpose everyday just by being the amazing person you are.

    You are in my prayers hun, Gentle (((((hugs)))))