Tons and tons of people have this disease and tons and tons of people have no idea they have it, they go their whole lives completely oblivious that this is going on and that is fine because for some people it causes no symptoms, no ailments, and has no short or long term affects on their bodies. Some people have minimal malformations that are just a tad longer than they should be and it may cause a headache here or there or throw your ass of balance a little bit, no biggy.
Other people find they have it and it has severe affects on their lives. It can cause all sorts of issues depending on what type you have and how severe it is. I'm not going into that because all it does it scare people. And please if you are one of those people who thinks that you have everything STOP READING and DON'T look this shit up. The "common symptoms" can be related to a whole bunch of shit and I really don't want to be getting hit up with the "do I have it?" questions, cause P.S. and by the way - I'm not a doctor and if I was I sure as shit would not be blogging at 12:53am.
Anyway, my case was different. If you read any of my shit you'll find that the more I post about medical ailments I am never "textbook", I am always that marvel case that needs specialists because they can't figure shit out which I think means my "P.H.D's" don't know S.H.I.T.
So onward - when I was pregnant with my daughter is when they found I had this Chiari and I was told a whole bunch of bad news which will be for another blog for another time. Yadda, yadda couldn't do much while I was preggo so we waited until after I had her. My OBGYN told me not to have any more kids but I don't listen well so I went ahead a few years later and had another one. I almost died having him and no one really knew why but I remember my Dr. asking my mother and husband which one of us they wanted him to save and they both said me and I sat up which was surprising because I was numb from the neck down and asked if I got a say in it and I got an overwhelming "No". To this day I think that's a little screwed up. Anyway both baby and I made it out ok and I'm happy to report we are all doing just fine today (again another blog for another day).
About a year went by and my Dr.'s watched the Chiari as time went on and my symptoms got worse but I was in no rush to have surgery. I saw an M.D. a few hours away for a second opinion and did about 15 MRI's and Flow Studies and made a follow up appointment with my neurologist closer to home. I went to the appointment both kids in tow and she sat my down and said "It's time." Being the ass that I am I was like "Time for what? Time to make the doughnuts? Time for lunch? What?" But she didn't smile, she was genuinely concerned. Apparently by Chiari grew which is highly abnormal and it grew quick and there was a blockage which meant at any given time I could stroke out. With all the issues still stemming from my son's delivery I was at a super high risk to keel over.
I remember I went to my mother's work and went up to her office and collapsed on her floor and sobbed. I wasn't ready. I was only 28. Brain surgery? No fricken way, not this girl. I had 2 babies, what if I died during it? What if I died before it? What if... And like all good mom's do, she held me and calmed me and reassured me that we would get through it.
I called the hubby, told him the grand news and made the appointment with the neurosurgeon. I was put on the rush list and within no time at all I was on the operating table. Oh what a joy. When I woke up I had literally a half shaven head and a vacuum seal over the incision. I remember the nurse in the PACU and I opened my eyes and literally projectile vomited all over her so hard that it bounced off her face and hit the girl across from her. Man to this day I feel bad about that.
I was in the ICU and totally spaced out. Luckily I have awesome family and friends who were there to see me and I just cried. That whole summer is a complete blur. I had so many allergic reactions, and so many bad days, I just blocked it out as much as possible. On the upside once you have a decompression you are affectionately called a "Zipperhead" because the scar looks like a zipper with the incision and the staple marks, but my awesome doc did it differently so mine is smooth and covers well with my hair that is not fully grown in but close. That was the same summer Lady Jackass Gaga decided to shave her head and get a tattoo on it, well guess what chick - I had the hairdo first so there! I had brain surgery, what the hell did you do?!
Anyway the point - tomorrow morning I am getting the Chiari Ribbon with some other designs tattooed on my shoulder for a number of reasons but mainly to show support for awareness and to support myself for making it through this past year. It's been a tough one folks.
Chiari has no cure at this point, and it is passed on from mother to child so it's something I will need to check my children for down the road (please Lord don't let them have it). You cannot catch it, you cannot "grow" it. But you can support those who have it, so please do. If you're brave enough take a look at the pics..beware though they are gross. Thanks for reading.
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It all just goes to show that you, yes, YOU Jen, can and will be able to do whatever you put your mind to! Nothing is ever set in stone and you have proved that simply by being you and surviving what you have. Life can suck sometimes but it's the strong people that carry through, become better for it and inspire others. I applaud you! =~)
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