The Life of Me, Smile Magee :)

2019 was the year everything changed. I rang off the year with a brand new blood disorder. People I thought would be in my life forever became strangers. People who I never thought would be important in my life, became like family.  My grandpa who for most of my life lived 5 minutes away . Moved 3 hours away. Days that were spent with Netflix in the background to cover a deafening silence. We’re now filled with screams, giggles, and Kids TV  Leaving me to wonder if I remembered what silence actually sounded like.  I thought my family would never again live anywhere close to eachother.  But somehow we ended up crossing the continent. Living in the same state. Being closer than we have been in so many ways  And being able to be together for Christmas and my Birthday. In 2019, I lost a lot of my health. Between millions of appointments and thousands of medical test. ( Counting end of December 2018 .)  I had 4 inpatient admissions.

Lab Rat  Just one more pill and it could all be fine .. Try this new pill.. it will work this time. I nod my head. I say ok. I take the pill, and with a swallow obey. Just to be honest: I don’t have a clue. But maybe one more test will show us what to do. With a million thoughts running through my brain. I roll up my sleeve so they can find a vein A rotating cast of White coats and needles Scrubs, and scans. A thousand different pieces. But no clear picture, no clear plan I feel my body, struggle and decay. I try to be a good patient. I try to obey. I take every pill, lay still for every scan. Follow every regime protocol and plan. I try to be the perfect patient. Yet here I am. I try to remember what the doctors who care have taught me. That my health is their job. But at the end of the day.. It’s my body. Some will see me, as a name on a chart. And leave it at that I may be constantly Tested. Poked, and prodded. But I’m much more than a Lab  Rat.  ( picture from @morethansick ). @smi

( this post was previously published on https://themighty.com )  My best friend and I where in a fight, but I needed someone to talk to. My head was spinning from the reality of the situation I was in, and I needed someone to be my anchor. I called my best friend sobbing, and left a message similar to this: “I need to talk. I went to a GI doctor appointment today and it was an absolute failure. They still can’t figure out what’s going on, and I can honestly feel myself slipping away. I don’t honestly know if I’m going to survive this. I don’t know if I’m going to live much longer. And I just don’t know what to do.” I was 19 when I made this phone call. My weight kept on dropping. I couldn’t keep anything down. My hair was falling out. My urine was full of ketones (which meant my body was using fat for energy instead of glucose because I didn’t have enough insulin in my blood). I was completely IV-dependent for nutrition. Different parts of my body where beginning to “malf

(This post was previously published on  https://themighty.com/ (  I attempt  to turn my gritted teeth into a smile when someone asks me my least favorite question. “So what are you doing with your life?” I can tell you what I would like to be doing. I’d love to be in school, living on my own, dating a lot, in the process of becoming a child life specialist and living the life of an average 21-year-old. But my life is far from that.   My life is full of hospitals, medications, doctor appointments, debilitating fatigue, excruciating pain, swollen malfunctioning body parts, a paralyzed GI tract and trying to play peacekeeper in a body that’s broken out into a full-blown civil war. When asked this question, “What are you doing with your life?” I typically force a smile and say, “Well, I’m still taking care of some things with my health… college is a lot of money. And I kind of want to be able to show up when I start college.” Or if I’m feeling really sassy, I’ll say something along the lin

( this article was previously published on https://themighty.com ) The typical teen romance.. Goes about something like this. “ A book smart brunette and her overly outgoing, and super charasmatic best friend prepair to have a senior year no one will forget.  Between busy jobs ,  lacrosse / cheer/ volleyball ( or some other clique sport) practice,  trying to get a great SAT score, Enough Voulnteer work to look good on a college application, getting into a good college, and just trying to survive.    Life is thrown completely upsidedown when the “book smart brunette “ meets the perfect boy.”  These movies are typically, cheesy, hilarious,  heartwarming, and downright adorable...  But if you are living with a chronic illness.. completely and utterly UNRELATABLE .  My senior year,   I was in the hospital every 3 days for dextrose IVs that we’re honestly my main form of nutrition.  I was dying from an Unknown Autoimmune condition doctors just couldn’t seem to f