Whoosh! "Oh no, not right now," I pleaded with my body as the room grew dim, my body tingled, my vision started to get spotty, and my hearing began to fade. Just before I felt my consciousness slipping, I sunk back into my chair. I couldn't stand, let alone walk. I was... trapped. Trapped in a body with a central and autonomic nervous system incapable of regulating itself. Trapped on the second floor of the Cathedral of Learning. Trapped on the University of Pittsburgh campus 45 minutes from home. Trapped very far from the welcoming safety of my bed.
The sensations that I have described above occur very often in my daily life. Within minutes of sitting or lying down, the symptoms usually lessen substantially. Consuming 4-5 liters of fluid and 3000-4000mg of sodium generally keeps my dysautonomia symptoms in check. When the solution isn’t so simple, I just hope that I’m home where I can slip into my bed, safe from my body or that my parents are nearby and able help. During the few times I have been away from home when these episodes occur, I have had to lean on my wonderful friends to get me through the tough times.
But the happenings of last night are not what this is about. As I stared a possible 20th hospital admission since January 2013 in the face, my usually well-concealed emotions took over. Being an EMT, I firmly believe that ambulances should only be used for the sickest of the sick. I could never be mad at my friends for watching out for me, but nevertheless I was annoyed to say the least. Not at them, but rather the circumstances. I wasn’t shy about pounding my fist on the desk, as one of my friends called 911. I tried really hard to hide my annoyance with the medic who made me walk a pretty substantial distance, nearly falling down the stairs twice in the process.
Behind that joking and giggling face in the ER was a 19-year-old “kid” afraid of being judged. Even though I was surrounded by friends that accept me for who I am, I couldn’t shake the feeling that they were going to see me as incapable of doing my job. Be angry at be for keeping them from getting sleep. See me as “damaged goods.” All this being said, here is why I am utterly fed up with my dysfunctional body. Everyone is entitled to their moment to vent, so this is mine. These are the harsh realities of my chronic illnesses. I’m not looking for sympathy; this is merely intended to inform.
1. I feel like I have the flu. Every. Single. Day
2. I have to take more medication than anyone should ever have to. Last I counted, I took 42 pills just to function on a daily basis.
3. The treatments for my chronic illnesses are potentially dangerous, and the complications have left me in life-threatening ordeals.
4. Every 2-3 months, I have to push pause on my life for 7-10 days to endure a hospitalization, but the world doesn’t stop turning, and I get super behind on schoolwork and other errands.
5. There’s no guarantee that I will survive these admissions to the hospital.
6. I’ve spent more time in the operating room in the last three years than most people will spend their entire lives; more than 75 trips to the operating room. If there were frequent flier miles for the OR, I’d be racking them up.
7. I am unable to study abroad like the average college kid, as I need constant access to highly specialized medical treatment.
8. I see my doctors more than I see some of my friends. There is always at least one appointment a week.
9. I am an EMT. I’m supposed to be the invincible person that takes care of other sick people. I absolutely can’t stand it when the roles flip, and I become the patient.
10. Constantly battling your body gets in your head. Living with chronic illness is like going through the five stages of grieving over and over.
11. My friends have had to help me out way more than anyone should. I feel guilty and indebted when they get dragged in the medical saga that is my life.
12. I am stuck with needles at least every other week. It has become so hard to start an IV on me that when I’m in the hospital, I have to have a PICC line placed.
13. My illnesses are really expensive to treat and maintain (even with insurance). A little vial of medication half the size of my thumb that is put into my IV can be about $2000.
14. Most of the people in my life cannot handle the intense ramifications that being chronically sick has on relationships and leave my life because they are incapable of handling it.
15. My life has changed in some pretty drastic ways. From needing a wheelchair to get around to relying on a shower chair to shower, some of these changes make me feel like I’m 99 instead of 19.
16. My ability to perform to the best of my abilities in school, skiing, taekwondo, just about everything actually, is compromised. It is hard to see the shadow of the person I once was.
17. There’s no cure for any of my conditions. This reality is the toughest pill to swallow and some days, I haven’t fully wrapped my mind around it. It’s a work in progress.
As my heart rate dipped down into the mid-50s, and my systolic blood pressure dropped 24 points upon standing, I was virtually rendered useless. Fortunately, the ER physician told me that I was right to come in. My vitals were too erratic for his comfort. That validation that I wasn’t exactly in great shape was a little comfort, but afterwards; I was ticked. I had failed. I essentially have to be a control freak about my body. It is a constant battle between what my body is capable of doing and what I want to do. When I slip up and ignore a symptom for too long or don’t rest when my body tells me I need to, I pay the price. I don’t let my chronic illnesses control me, and I don’t want them to be the reason I didn’t follow my dreams. All this being said I need to stop pushing my body to the brink of total failure.
With several chronic illnesses and progressive neurological conditions, I know that I'll probably never see a day free from dizziness, nausea, neuropathic pain, and subluxing joints to name a few of the unpleasant symptoms I experience on a daily basis. I am lucky to have such amazing friends and family that love me unconditionally and watch out for my best interests. Through it all, I try to stay positive and keep how I'm actually feeling to myself. As one of my friends reminded me, it is okay to let it all out every once in a while. Even the strongest person needs to vent, and everyone has their kryptonite.
I consider looking at the bright side of things even when there’s little to nothing positive to say, a way of keeping my sanity. Life with chronic illnesses is unpredictable and any day can end with a trip to the ER or a hospital admission. I'd like to end this post with a quick reminder for both myself and everyone else. As I have said since I was four years old, when the going gets rough, "Keep your chin up and charge the mountain!"
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!