The Beginning

So I'm 28...living life and I get this cough that lasts for months and I think well that was weird but whatever. Then I start to notice that my voice sounds weird and I'm having trouble talking...like my tongue is heavy and honestly I sound drunk all the time.  I mean I was drunk alot but that's not what it was. I finally tell my mom we need to see the doctor. At this point the fuckin cough is back...I'm choking on water sometimes like I didn't know how to swallow ( we all know that I knew how;) lol )and I start to notice weakness in my arm. Being a massage therapist I chalk it up to over working and I decide I need work done so I do accupuncture...more yoga..get massages and hope it works. Meanwhile the doctor gives me stuff for a cough cuz my blood work is fine and refers me to an ears nose and throat specialist. So the ent finds nothing besides a little acid reflux and gives more stuff for the cough. It's not working so I'm referred to a breathing specialist. Mind you these specialists are top of their fields. So if they say you're fine.....then what. So I do the breathing tests and guess what..I'm fit as a fiddle. At this point I notice that I don't feel like myself. I'm nervous and anxious and have uncontrollable laughter at the tiniest things or most inappropriate times. Oh and now my balance feels off. I can't tell you how many times I fell over while working out. I feel like I'm losing my mind. All of this is happening while I'm still working...being a bridesmaid...working out...and dating someone new. In an effort to make sense of all of it I turn to trusty web md. Surprisingly death wasn't the first thing that came up...lyme disease was. I fit about 90percent of the symptoms and thought I should get tested. My God it was like pulling teeth to get a dr to consider it.  By this time we called old family friends who were drs and big shots in their fields. So I had blood drawn for the millionth time and waited. Her diagnosis was my favorite part...she said I was fine. That it was all in my head and perhaps I was just depressed because I was still living at home with my parents. Bitch what!!?? I have never been so enraged in my life. I didn't say a word to her. Off to work I went. I remember after my last massage I was standing outside waiting to walk my client back and I noticed my hand twitching. It was the strangest feeling and I couldn't stop it. That night I was searching through Netflix and came across a hilary swank movie called you're not you about a girl who gets diagnosed with ALS.. I cried myself to sleep that night. After that I did more and more research and it got scarier. My gf and I even made a trip to the er just to get a full work up by others to see if they find anything...nope. I remember talking about it with my coworkers and one suggested I make a list of my symptoms and maybe that will help the doctor. It did. I was referred to a neurologist who saw me for 5 minutes and referred me to the ALS team at uc Irvine. I went to work that day and a friend asked how it went and I broke down right there outside of work and I didn't even know yet but I was so scared. My mom and gf had to come get me because I couldn't even talk. A few days later we started with the ALS team and their tests. After they got the results they had us come in and as me ...my gf and parents sat there all I kept saying to myself was not me please. When they told us I had ALS I remember trying not to cry but seeing the looks on my parents and gf face killed me and I couldn't hold it In. My dad asked about survival rates..my mom was in disbelief and Michelle just held my hand and we all cried while the doctors explained more. We went home and I texted my best friends the news and I broke down again thinking about how the fuck I'm going to tell my siblings that I'm dying and have anywhere from 2 to 5 years left. It was one of the hardest days telling them but we got through it crying and cracking jokes. Honestly the worst part of this is seeing what it's doing to the people I love. Seeing them hurt and sad is gut wrenching. I can feel the anger growing in me and I vow that it won't take my spirit! I'm not going to be a whiny bitch or sad. I'm going to be positive and shove everything else down and behind a wall in me. I'm not going without a fight! Fuck you ALS and if there's anyone out there running this show and this is your plan for me...Fuck you too. And so the journey begins....

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