Ok, I'm just going to start writing what I'm feeling and I'm not going to stop. Consider this my current stream of thoughts, typos and all. This is really long and depressing in some points, but I try to go for transparency and showing the real deal. So here it goes...
I'm trying to prepare to enter the workforce upon graduation from college in the Fall of 2018. I have a good GPA and I'll likely end up with a 4.0 this semester and on the Dean's List. I'm planning on taking 15 credits over the summer term and I'm really excited for the majority of the courses. Except Introduction to Logic, not particularly excited for that, but hey, general education courses have to get done right? I have current goals of getting into the Communication Honor Society and Phi Beta Kappa, which is one of the most prestigious academic honor societies in the United States and I want to get the highest GPA I can. (Read: Do my very best all the time.) Graduate with my two majors, a minor, certificate, and a related area in linguistics. So school is all cool right now.
Moving on to taekwondo, I am coming up on a milestone testing for my 2nd Degree Black Belt-Decided. I am super excited to test. I am expecting 4 PA State Champion titles for my division and I dream of competing at the Northeast District Championships. I've had the incredible ability to judge at tournaments and become an instructor. There are some aspects of my training that are driving me up the wall and I'm trying to address those appropriately. That's a story for another time.
As for my job, I love it. Nothing gives me more pleasure than watching my students set, reach, and surpass their goals, learn and practice valuable life skills, and become physically strong and confident individuals.
Then, I have Finn to train, but he makes me so happy. I wish I could see or train with him more. Months ago, the thought of a service dog was such a major source of anxiety. "Is this for me?" "What if someone else needs him more?" "What if I screw him up? People have worked so hard to make him amazing just for me." Now, I'm afraid of him forgetting everything he's learned because I haven't gotten to spend real time training with him yet. I also enjoy helping out with AB Canine. It keeps me distracted and I get to spend time around all the dogs I could ever want. I'm still questioning whether I should keep helping, because my family is so invested in it and I don't want business to strain my personal relationships with the family the way it is. The last 5 years, I have managed to spoil every good thing I've ever had. PDM, Student EMS, ski patrol, taekwondo, school, the list goes on, but I've spoiled literally everything and got hurt because I gave 110% of myself and my efforts. Every. Single. Time.
Now, let's throw some gas on those fires and bring my dysfunctional body and health into play. I spend a lot of time waiting. Waiting for doctors. Waiting to fall asleep at night. Waiting for the medications to kick in. Waiting until I can get a desperately needed nap. Waiting for lab results. Waiting for appointments. Waiting for a diagnosis. Waiting for a treatment. Waiting for the custom wheelchair that keep me going. Waiting for my cochlear implant to be re-activated. Waiting, waiting, waiting... I usually don't tell people when I'm at my worst and I like it better that way. It means I don't get constantly criticized for complaining, which let's face it, no one likes someone that complains all the time, even for legitimate reasons.
After my last surgery, I did a horrible, horrible job of hiding how bad things actually are right now. I cried. I whined. I complained. I did a lot of thinking out loud, which I never should have done. My CRPS and Otto were kicking my butt, but I should have been able to control it. Be stronger than it. Pain is a mental game and I lost terribly after the surgery. I feel awful about not being the strong, happy, always smiling person that I am expected to be. I get an earful about it when I'm not strong enough. Sometimes it is explicit and sometimes it is implied in the comments of others. The guilt is through the roof for me. It was a solid 20 hours of wishing someone, anyone would help. The attending on the chronic pain service refused to allow the nurse to see me. Obviously, my wellbeing is not worth enough to them. What a great morale and self-esteem booster...
As a result, I can't get the treatment that gives me the best shot of stopping the progression the symptoms of Otto. I failed. I am failing. Bad.
Yes, I am a full-time student. Yes, I do taekwondo. Yes, I have a part time job teaching taekwondo that I love. Yes, I'm currently working on training my service dog, Finn and yes, I'm trying (and failing pretty miserably) at managing the only thing that is strong enough to kick my butt, which is my body. I still have to face the same world as everyone in 2 years. You sink or swim. The real world isn't always nice and accommodating and I don't expect, nor do I want, special treatment. After graduation, I'll need the education, life experiences, and finances to succeed on my own. Society has conditioned, not only me, but my entire generation, that this is what we have to do. It seems like a lot, but without my health, it is really typical college kid stuff. Poor health is not an excuse in the real world. It just isn't.
I've walked several sections of this journey by myself. I've cried myself to sleep, because no one, including my parents, believed my symptoms and that I couldn't control them. Let me tell you, that is a lonely, lonely place to be. I've cried myself to sleep in the hospital after my parents left because they couldn't deal with me anymore. It's always my fault. My fault that I got sick over a stupid vaccine. My fault that my health is totally screwed up. My fault that dysautonomia makes me pass out for no reason. My fault that dang antibodies are attacking things they shouldn't be. My fault that my CRPS spread everywhere. My fault that I'm hypersensitive to painkillers and that they've almost killed me. And according to one of my doctors, my fault that I had status epilepticus, hypercapnia, a coma, and metabolic encephalopathy, and more due to a "conversion reaction" that I "should have been able to control". Yep, this is all totally my fault! I know I forgot a few examples. Just let me know and I'll add them to the list.
I try so hard to keep life as "normal" for myself and other as possible. Sometimes I just epically fail; some worse than others.
In the meantime, I'm still here... Waiting for someone to toss me a rope so I can climb out of this black hole. Waiting, waiting, waiting...
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!