i don't talk about it.

chiari malformation. a name that i always have to spell when i go to the doctors office. why would i have to spell a medical term for a doctor? because it's so rare and under-studied that it's not common vocabulary, even for the best of them.

i was diagnosed in november of 2002 after a constant headache that started in march of that year. doctor after doctor passed me on or misdiagnosed me. no one believed that i was in pain. many medical charts say "she's smiling, too happy to be in pain".

i had my first surgery in december with the motto "pain free in 2003" hanging over my hospital bed. we had so much hope. but the pain came back. worse. i found the chiari institute in one of my many (probably middle of the night) research sessions and made an appointment. i underwent my 2nd surgery in september of 2006.

but the pain came back. worse.

in 2009 i met william. for the first time in years i had real hope. my first massage session with him, i had tears rolling down my cheeks into his hands because for the first time in 7 years, i had a little bit of relief. it didn't last very long after a session, but 5 minutes of relief is worth so much. i knew what i had to do....marry him and have his baby ;) okay, that wasn't quite the plan but it worked.

william has helped tremendously with my muscular pain which was a huge part of it. but there's the rest of it that goes untouched by anything we've tried. countless medications (over 30), alternative therapies, injections, etc. there are days that i can't open my eyes and my sweet momma takes care of my baby for me. there are nights that william doesn't sleep because he's trying to rub some of the pain away.

we've lost 2 babies now. unexplainable reasons. pathology reports are perfect, my blood work is perfect. my doctor said i could be in a car wreck or addicted to heroine and the babies would probably survive. ouch. we feel like God is telling us loud and clear that it's time to take care of my head before we have any more babies. well, more like william is being told, i'm too stubborn to listen when i don't want to hear certain things ;)

so i've submitted all of my paperwork to the chiari institute and will hopefully get in sometime in october. this brings so many emotions. i'm shaking as a type this. i'm so so frustrated (okay, angry) that my family has to go through this with me, i'm terrified of another surgery. it's completely different having brain surgery as a momma. can't even think about it. i'm dreading the "next step". i'm sick to my stomach about the expense of it all. the possibility of leaving willow while we go (anyone wanna travel to NYC with us? no, really).

i've told a couple of people about the appointment and the response is the same. "why?? are you having problems again?". this floors me until i realize that I DONT TALK ABOUT IT. i never ever want to bring someone down because i'm hurting. i don't want anyone to act differently because they know it's a bad day. but here's the truth, y'all. I NEED YOU. so bad. i need your prayer. i need to know that my family isn't alone. it's a lot on william. of course. and it affects willow too, even though a day with her nana is the best thing ever. :)

so here's how you can pray.
1. that i would be given continued strength and peace
2. the same for w
3. that we would have financial wisdom (we're dave ramsey fanatics)
4. the doctors would have a bomb dot com cure
5. cheap flights and hotel in nyc (ha!)

my diagnosis is chiari malformation and tethered spinal cord if you want to google it. and here's an awesome sauce portrait of me :)





i'll keep you updated on the journey. xo


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