Wednesday, September 24, 2008

Ah ~ yeah ~ still in a place called VERTIGO

So, what's a girl to do when vertigo comes over for happy hour and decides to stay a while!? Any ideas ~ I welcome them all ~ SERIOUSLY ~ so over the vertigo. I would like to know when vertigo is planning on leaving ~ any time now is good for me! Make sure your stare at the picture above, at least long enough to feel what I have been feeling.

So ~ last weekend was the first ever conquer chiari walk across America. I haven't seen the total numbers of how much was raised on that day, but here in Albany, NY ~ we raised $6,000 just on the day of the event. That's not counting online donations. Thanks so much to all who donated! I was blown away by the number of people at the event ~ over 200 came out for the walk. Even though the walk was a brief lap around the park, the chance to get together with other brain tails was priceless. It was so awesome to finally meet one of my blog buddies ~ D. Hall ~ (that's D. in the middle and a new chiari friend, Nancy) please lift her up in your prayers as she is having surgery on 9/30/08.

My Brain Tail discovery day is coming up this Friday, September 26th ~ it's been almost 2 years since I was diagnosed with Chiari. The friends I have made on line through my blog and yahoo chiari groups have meant the world to me. It's like the Sisterhood of the Traveling Brain Tail. We instantly have a bond and even though Chiari manifests itself differently in each person ~ we understand what it feels like. The support has been encouraging and downright sustaining at time s when I just wanted to curl up and hide under a rock. I laugh and make fun of all my crazy symptoms, but deep down, I am so ready for my real life to begin. Why me ~ why now ~ like my Mom said today, "There has got to be a pony in there somewhere." My response was ~ "Make that a unicorn disguised as a zebra!"

Some of you have asked how I have been feeling ~ truthfully ~ it's been bad lately. Probably worse than I remember pre de-tethering. Between the increasing brain fog, vertigo and headaches, I am kicking myself for scheduling my surgery so far out. December seems months away. I am trying to take it day by day ~ try to look forward to something that will distract me from the harsh reality of brain surgery. Thank goodness for our DVR and all the season of show starting ~ escapism rocks!

Before I sign off ~ I do have a bit of good news ~ my youngest daughter, Skyler, had her consult appointment with a neurosurgeon yesterday. The hair rose up on my neck like a porcupine's quills when we entered the doctor's office. You see, this is the same practice where 'the godfather' practices. Here's the link if you don't remember ~ http://livelovelaugh-lace1013.blogspot.com/2007/07/is-it-there-if-you-cant-see-it-on-mri.html. So bizarre for me not to be the patient this time around. Anyway ~ to make a long story short, absolutely adore the doc ~ very sincere ~ he ordered a full MRI ~ brain to spine for Sky. Her MRI is on 10/9 ~ pray that we get through it without sedation. I want the truth to be revealed. Clear answers so that we know what to do next. Of course we aren't planning on moving forward with any treatment for Sky until next summer at the earliest. I can't even go there right now ~ but knowing what I know about EDS ~ Chiari and Tethered Cord ~ I have to make sure that my children don't have to go through brain surgery, too.

Random ~ anyone out there watching the new show on FOX, The Fringe? So love it already ~ can't wait for Grey's Anatomy to start tomorrow ~ it's the little things that make me smile.

4 comments:

Dee Hall said...

Hi Lacie..
Sorry to hear you are still on vertigo vacation... Have you tried traction? I tend to walk leaned over when I have one of those episodes. Its like being in one of those tunnels at the fair...except nothing is really moving. I feel for you...
As for December..it will be here before you know it...day by day. God only gives us enough grace and mercy for 1 day at a time. Know that Iam always here to help you get through your day.
I cant wait to get together this weekend. Something to look forward to. (Especially before next week) Thank you for your prayers..as you and your family are in mine. :D

Your Chairi sister
Dee

Satia said...

Hello. I have vertigo and find that certain forms of yoga (hatha in particular) help me deal with it. Also Qi Gong because of the very slow movements. When I do one or both every day, I am definitely better equipped to cope with my vertigo. If I start to skip a day here or even a few days, I definitely pay the price. If there is anything I can do to help, resources I can recommend, etc., please feel free to contact me.

Satia

Debbie said...

It sucks that you are back to where you started before being tethered....I can't wait till you feel better after the brain surgery..hopefully it will make you feel better.

I only can say

'The WILL OF GOD will never take you where the GRACE OF GOD will not protect you'

You are strong and will get through this...one day at a time. Hang in there.

Debbie

hedwyg said...

Thank you for visiting and leaving a comment on my blog!

For vertigo, I tend to rely on meclizine. Available as the "less drowsy" formula of Dramamine, as Bonine, and generically from drugstore.com for about $7.50 for 100 tablets. And then also, the parable about driving in the fog, too. Slow down, use the lines (as in, hold onto the walls when you need to!), and be watchful and careful.

Hugs and prayers!