016: You Forgot When I Never Can.

Over this last weekend I spent the nights partying and celebrating my birthday and the days throwing up, fighting extreme fatigue, experiencing water faucet diarrhea and an overall general "I'm miserable feeling". AND NO IT WAS NOT JUST A HANGOVER. I bet you're wondering "well why did you keep going out if you got so sick"? If you've read 'Forever Young' or if you haven't, it explains how last year on my birthday I celebrated in the activities room of my hospital floor while I was waiting to die. Thing is I didn't. I didn't die. I actually survived another year and have been blessed enough to age at least once more. Before I got sick I planned to go to Dubai for my birthday, but unfortunately that is not a reality for me. So my Dad suggested he purchase a suite in Vegas and fund a weekend of staycation celebration. Obviously I'm a grad student so a free birthday celebration sounded marvelous. Not to mention, I believe I owed myself to honor the year I survived, honor the hell I've been through, honor another year of life I was blessed with. 

But my birthday celebration details are not the focus of this particular post. Over the course of my birthday weekend I came to understand that people genuinely don't think I am "that sick" because I don't always physically look it. Because I used to work at Sephora and my makeup is flawless. Because I dress well or keep myself cleanly manicured. Because quite frankly I have an unyielding fight deep inside of me that refuses to be beaten. I've always maintained to 'never give up, and never surrender' to anything or anyone worth fighting. So while I may be smiling on the outside I could be suffering greatly on the inside. 

Call it pride, call it courage, call it whatever you like but please don't forget that I'm sick. By no stretch of the imagination do I want pity or empathy from anyone because I'm one of the lucky few who is "actually sick". But I need you to understand, just because you've forgotten that I have a chronic illness--I take 17 pills a day, I get weekly intravenous infusions of a immunosuppressive drug, I have a diet that consists of about 10 foods that don't induce flairs, I've lost 20 or so pounds this last month from malnourishment that I now get intravenously fed nutrition to stay alive--I CAN NEVER FORGET. 

I will never have the luxury to forget that I am indeed "really sick". Even when I'm in remission and I have no flairs and for all intents and purposes I feel "normal", I still can never forget. Any moment, any food, any over strenuous or stressful situation could send me right back into a flair and or right back into the hospital. I literally live in fear of my own body. I've heard a saying about autoimmune disease that said something like "I'm so bad ass, only I could take me down". While that sounds cool, it's actually not. My body doesn't know the difference between foreign invaders and healthy homies. It's a terrifying feeling to think I can shit myself in public, throw up at someone's house or on a date, or be so tired that I can't get out of the bed during a flair to help myself. I freak out when my phone dies because I may not be able to call 911. I'm awake more than the average person so I have far more time to over analyze and plan for worst case scenarios. 

I tell you all of this to say, do me a huge favor? If you know someone with a chronic-illness, an invisible disease, autoimmune disease, or any type of sickness that you don't readily understand; PLEASE take the time to do some research on it. Look it up. Listen to your friend or family member to see how this disease effects them individually, because honestly it's different with everyone. However, there are basics you can learn to help you better interact with and comprehend their plight. I was recently told by a friend of mine that "it wasn't fair that I was blaming a mutual friend of ours for stressing me out and making me sick". See the thing is, it's not fair that a little or a lot of stress will make me sick. And to be honest, there's not a damn thing I can do about it. I can mentally think I'm ok but then my body betrays me and flairs up. It's not fair that they haven't taken the time to truly understand what I go through. But think I look fine and must be "over exaggerating". The ironic part is, I'd never ask you to walk a mile in my shoes because I know how hard this is on me and I'd never wish that on you. Just thinking of walking a mile some days sounds like excruciating torture to me. 

The comments don't hurt my feelings, it's actually the expectations of being normal because I look normal TODAY that people place on me. There are days when it takes every bone in my body, all the will I can muster, just to get out of the bed. Then if I manage to go to class or work or anything besides going to the bathroom I am proud of myself. I feel like I've conquered the world that day. Then there are days when I have flashes of the old me and I have energy for hours and I'm preppy and genuinely smiling, not faking it. But the thing is, everyday I wake up prepared for either of those scenarios. I'm now flexible enough to know I may have planned something that may never happen--activities wise. It takes a toll on you mentally and physically. It's hard, but it's harder when the people you care about don't take the time to understand this is my reality. It's not just dinner I'm late too, a movie I missed, or idk a date that thinks I've blown them off. One day I could be late to my wedding. One day I may miss my Phd graduation ceremony. These aren't just 'one days', these are my every days. 

So just remember while you may have forgotten that I'm allergic to this or that, that sometimes I hurt so bad even bed sheets hurt, that sometimes my bowel movements are like a broken water faucet that won't shut off, that I've literally thrown up water for two weeks straight before.... I WILL NEVER FORGET. 

Ox.