Monday, April 19, 2010

Embrace


How do I make peace with someone who is constantly betraying me? Just when I think we can be friends and work together in harmony ~ SHARK FARTS ~ there she goes and does it again!!! I continue to be disappointed, over and over again. How long am I willing to put up with trying to rely on someone who isn't dependable anymore?

I am sure by now you are wondering ~ who is she talking about and why is she still friends with this person ~ right? This has to be the most challenging relationship I have been in and it's a lifelong bond. Believe me, if I could take a vacation from my brain, even for an hour or two, I totally would!

I haven't blogged in a while and don't want this post to seem completely a downer ~ so let me go over the facts first:
  1. I have a Chiari Malformation of which there is no cure (not yet...)
  2. I had two surgeries in 2008 to put a halt to the progress of irreversible neurological damage caused by a kinked brain stem and my brain hanging out in my spinal column
  3. I have cranial settling and need fusion surgery, but am battling osteopenia to strengthen my bones enough so that I can eventually get the fusion surgery
  4. When I was released from the hospital after my brain surgery, my brain surgeon gave me this piece of advice. What ever you do ~ don't get in a car accident!
  5. My car was rear-ended about a month ago when I was sitting at a red light.
  6. Headaches and vertigo have moved in again
So you'll find me somewhere in the middle ~ again. I don't know how this keeps happening, but just when I think I have moved out of the middle, I find myself caught here again. I am certain that I don't want to go back and it's unclear where the next path is. This might explain why my blog has been quiet for quite a while sometime. If you look at the big picture, I am a poster child for successful tethered cord and decompression surgeries. I healed beautifully and gleefully went back to work within 2 months. My quality of life has greatly improved ~ some days I almost feel 'normal'.

Then I have a day like today when it's all I can do to keep from retreating to the bedroom, close the blinds and climb under the covers ~ praying that sleep will wash away the headaches. But I press on ~ I have a physical therapy session for upper body strength and balance in an hour. Maybe after that I can take my heavy duty pain meds...But this is only a temporary fix. What does this mean long term? Do I wait until December ~ see if my bone density increased ~ then what? Do I schedule a fusion surgery for the spring? If I get the fusion done will it actually help my headaches or make them worse?

So at this point ~ I am going in the direction of welcomed distractions ~ send them my way ~ please! One day at a time ~ I keep setting mini goals and keep putting things in my calendar so that I have many things to look forward to. Honestly, the best medicine for me right now is time with friends ~ laughter is a wonderful cure. Now, can we bottle that up and cure chiari with it????

***What's up with the zebra you ask? Well if u look at a zebra it's pretty much a horse ~ except for the stripes. Chiarians are kinda like Medical Zebras .

4 comments:

rachel goldstar said...

oh lacie, i wish you didn't have to face this overwhelming life experience. i'm thinking about you and sending lots of love your way. you are such an amazing creature and the world is lucky to have your footsteps upon it. i have known this since my first conversation with you. love you!

E said...

Ditto!

ResilientHeart said...

Dear Lacie,

I'm so sorry to hear of your accident - as one who has been rear-ended twice - and have been following your blogged journey, this particularly pierces my heart.

Although our experiences are different, I relate to a lot of what you're feeling.

You have a strong spirit, a strong soul, I know you'll find a path through this just as you have the other challenges you've faced head on.

Be gentle with yourself, and as a friend said to me, "Don't should on yourself." :-)

With support and love,
RH

Leslie said...

What a frustrating set back.

Surgery is basically not an option for people with Chiari who live in Canada so once I was backed into a corner I started trying some more off the beaten path stuff and surprised with the success.

I've eradicated the brain fog and balance issues with neurodevelopmental programs.

nacd.org or www.icando.org

Regular cranial osteopath appointments have taken the pressure off my brain too.

I went in very skeptical and came away (over time) with way fewer symptoms.