Tuesday, May 1, 2012

When it rains, it pours

Chiari Blog Carnival #3: When it rains, it pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.
"But you don't look sick?"
(Photo provided by Eliza Jayne Photography)
The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After dignosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?
You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown.

This topic fits well with what happened two weekends ago. We had the bachelorette party for my best friend, Abby, on April 20th. We all took her out to dinner. Then we were off to the bar across the street from her house. We had a limo scheduled to pick us up about an hour into that as surprise. The limo would drive us around town to various bars for the night. Now let me first say I was the only female in the bridal party aside from the bride. Abby and I have a lot more male friends. She had me (her maid of honor) and 3 boys her bridesmen/maids. The bachelorette party was mostly men. haha.
Anways. We went throughout the night all was well. I was mostly pain-free all day. As it got closer to the end of the night...my head started. (I do not drink and did not.) It was about 12:30AM and we had about 2 hours to go. I couldn't crap out and leave. We went for 4th meal at taco bell. I didn't get anyting as I felt nauseous. I thought I was going to puke from the smell when the food got into the limo. But I was ok. Everyone was offering medicine or alcohol (lol thanks but that won't help?) and what they could do? My head continued to get worse and the pressure in the back of my head grew. We parked across from Abby's house and thanked the driver. We walked over and I knew I was about to vomit. I whipped my hair up in my hand out of my face. I projectile vomitied on the sidewalk. It was like some kind of Exorcist move. It was a good thing no one was in front of me. Abby said something like "you puked like a rock star" Everyone was like "WHOA" because it came out of nowhere. They were all trying to help hold my hair and rub my back and ask if I was ok. At that point I to be left alone for a second in case there was more.

Bridesmaids L to R:
Mike, John, Abby (Bride), Me, Brad
The good thing about it...I made it to the end of the night, Abby had a great time. And my friends actually got to see something that Chiari does to me. They were able to see a bit of the pain I was in. If they couldn't see the pain on my face...they saw it when the vomit shot out of nowhere.

Don't forget to check out the rest of the Carnival!


  1. I hear that constantly - "Wasn't this surgery supposed to ~fix~ you?" Um, no. Just like insulin doesn't ~fix~ a diabetic - it just helps them get through their life a bit easier!

  2. My headaches started all at once and gradually went from being half day headaches to being all day headaches. My family doctor told me it was only migraines and gave me different medicines that didn't do anything. All my friends and family told me I just needed to drink more water. I finally went to the urgent care doctor who ordered my MRI the next day, which is when I got diagnosed with a syrinx and chiari. I was 18 at the time and turned 19 right before my surgery.

    Not sure if you have ever had to deal with it but two of my friends were positive they had Chiari as soon as they heard I had it. It didn't matter that I tried to tell them I had headaches all day every day, and theirs were a few hours a few days a week, they wanted to get tested asap. It got annoying quickly.

    I got my surgery and am still dealing with the headaches daily. I have the slurred speech and its funny that you refer to it as a hangover, because I told my family and friends it felt like I was permanently drunk. I trip and slur my speech constantly. I'm afraid of getting pulled over. I was very disappointed when I went to the state fair this year and couldn't ride any rides because the rules all said "no head, neck, or heart problems, and no medical conditions".

    And now that my rant is coming to an end, the one thing I have learned from all of this, always, ALWAYS have a barf bag within reach.

  3. There are definitely dayes where I wish I had a barf bag handy.

    I've never had anyone have "sympathy chiari" but I've had the opposite quite a lot. Where they take what I say and how I act as just that...acting. Or faking it.