Friday, October 2, 2009

Happy 2 Year Anniversary to Me!

Two years post decompression and I am 27 weeks pregnant with twin boys...could it be any better?! :)

I get asked a lot about my plans for the birth...and truth is, I don't really have a plan. There are just too many variables that will come into play and will require a "game time" decision. I trust my doctor, my husband, and myself. I've been through enough pain and medical procedures to know what I can handle, and my husband does too. (He also knows not to let anyone near me with Percocet - EVER!) I'm definitely looking forward to the experience! It'll be the first time I get to go to the hospital when it's not a major procedure to fix something that's wrong with me...I'm even more excited than I was for my decompression!

I feel that in many ways, my Chiari and my decompression surgery helped prepare me for the upcoming delivery. I'm loving being pregnant, and while the belly is starting to get uncomfortable, it's nothing compared to living with my Chiari symptoms for years.

Friday, July 24, 2009

Pregnant...with Twin Boys!

So since I don't do anything normally on the medical front, I am now 17 weeks pregnant with twin boys (due in December). YAY!!!

We struggled with infertility resulting from my PCOS which led us to try fertility treatments for a year before successfully conceiving twins! PCOS doesn't appear to have any connection to Chiari, but after finally being diagnosed with PCOS and understanding what makes it worse (insulin resistance, obesity, and diabetes), I was able to change my diet and take medication (Metformin) which resulted in my losing over 50 pounds post-decompression. While that alone didn't get me pregnant, I absolutely believe that it helped!

Just like with my Chiari diagnosis, I was able to find a reproductive endocrinologist that I trusted and who provided me with great care! Should you ever need one, I highly recommend Dr. Coffler at Huntington Reproductive Center for infertility as often as I recommend Dr. Oro for Chiari. :)

As I told another Chiarian, pregnancy is nothing compared to living with Chiari!!!

Thursday, October 2, 2008

Happy 1 Year Anniversary to ME!!!

Today is officially one year since my surgery and I'm still symptom free! Thank you Dr. Oro!


Wednesday, July 2, 2008

I did it!

As previously mentioned, I chopped off 9 inches of my hair today to donate to Pantene Beautiful Lengths. 9 inches on the 9 month anniversary of my surgery. Here are the before and after photos:




My mohawk is now completely even except for at the very top of my incision area, but thanks to some of Jason's creative layering, you won't even be able to tell as it grows out. I LOVE having my hair all one length again!!!

Wednesday, April 30, 2008

Save the Date!

September 20th, 2008
Conquer Chiari Walk Across America

The goal is to have one walk in each of the 50 states. For more information, please visit: Conquer Chiari Walk Across America.

I've volunteered to co-organize an event in Southern California. I encourage you to participate in your state as well!

Friday, April 4, 2008

6 Month "Anniversary"

My "mohawk" is getting quite long and is at the awkward stage where it's too short to fit in my ponytail and too long to just ignore. I have to clip it up and it almost always sticks out somewhere.

I've decided to grow my long hair for 3 more months and then chop off 9 inches on the 9 month anniversary of my surgery and donate the two ponytails to Pantene Beautiful Lengths. They only require 8 inches and give free wigs to women who lost their hair due to cancer treatment.

Sunday, March 2, 2008

5 Months Post-Op

Still "boring", no symptoms, I just feel absolutely wonderful! The busy season at work is drawing to a close and for the first time, I didn't leave work each night completely exhausted with a piercing headache. Sure I was tired, but in a completely different way - I wasn't exhausted and drained. Just in need of a little rest and relaxation. Words can't describe the difference. It's amazing!

Tomorrow is my birthday and I'm getting my first professional massage post-op. I can't wait! It's nice to be getting a massage for pleasure, rather than for survival.

I've received a few emails over the last few months from others with Chiari that want advice or just to hear more about my experience. If you're reading this and want more info, or just want to "talk" to someone who has been there, please don't hesitate to send me an email. It is so rewarding to be there for someone and is amazing to instantly feel so connected to someone you've never met that lives 3,000 miles away!

To have "survived" Chiari and be symptom free, I feel a need to give back. If this blog and a few emails help someone else, I feel that I'm making a difference, however small it may be.

My life with Chiari Malformation Type I

This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.