I started this poem several months ago before an admission, when I was in extreme agony and I saved at on my computer, but never had a chance to finish it. While going through files on my computer, I came across this piece and I figured I might as well finish it. It is a vent of sorts in some parts of it.
If only you knew what it is like to be in so much pain that sometimes you lay in bed at night praying for God to end your pain.
If only you knew how hard I try to conceal my pain and illness; to look like a typical young adult, but still be known as the “sick girl” anyway.
If only you knew of the self-consciousness that floods my typically very confident self when I am given a look of sheer pity, disgust, ridicule, etc.
If only you knew how much it hurt to have friends try to keep me from going to a conference with them, because they were afraid that I would end up in the ER. The lack of trust in me and my decision making abilities was extremely disheartening.
If only you knew how hard I have to push myself to take nasty medications and endure more pain to try and eliminate pain.
If only you knew just how tired I am of fighting. Of taking handfuls of medications day in and day out. Being poked and prodded.
If only you knew how emotionally difficult it was for me to apply for a handicap placard. Seeing the word “Permanent” on the placard was just another reminder that this battle is not a sprint, but rather ultra-marathon. It is even harder to use it when I know I need it.
If only you knew the challenges of feeling like you are walking on a bed of coals while being stabbed, crushed, and frozen. Being able to walk while in excruciating pain is a skills, but walking without pain is a great blessing.
If only you knew how I much I wish I could escape from my shattered body, as I look back on the days when pain wasn’t forever. I wish I could go back to my former self. The girl that didn’t have to worry about the consequences of doing everyday tasks or hanging out with friends. The girl that could run like the wind whenever she pleased and dreamed of being a great basketball player. The girl who didn’t have to watch her hair fall out in clumps and who didn’t have to hear the small screams of children or the shocked eyes of doctors and nurses when her legs turned.
So the next time you volunteer to take my pain from me, please remember this. My pain is like nothing you could ever possibly imagine. Because I know this, I’d never let you take this pain. Not even for five minutes. No one could last a lifetime in this body. A lifetime of fear of what is going to malfunction next because something is always malfunctioning. I scream on this rollercoaster of pain that no one can seem to get me off. The emergency brakes have long since broke. Even if you think you could bear it, I’m here to tell you that you can’t, because truly even the people with the disease can’t stand it. No one can. If only you knew.
As I sit here at my computer writing this, I am in awe. At this very second, I am waiting for my medications to dissolve in my mouth and my left foot is screaming because I messed up my toe doing martial arts. Medications, pain, nausea, dizziness, blurred vision, numbness, tingling, and… martial arts? What do all of those things have in common? They have all become a huge part of my life in the last 36 months, and I definitely wasn’t ready for it.
It’s been three years since my life was flipped upside down. Three years since I learned of the horrors of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. Three years ago, a doctor told me it couldn’t be this because I’m young, but ordered the sweat test that ended up confirming my diagnosis. October 17, 2012 10:38 AM. I was sitting in my high school elective entitled “The Presidency” when I felt this terrible searing pain like nothing I had ever felt before. I remember my right pinkie feeling so hot that I could have sworn it was on fire. I vividly remember gasping as this overwhelming pain enveloped my pinkie. How could a FINGER hurt so much? My solution was to apply ice to my visibly red, heat radiating, swollen sausage of a finger. I would quickly learn how bad this would be for my body. A big RSD/CRPS NO-NO!
I am one of the lucky people with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) that got an accurate preliminary diagnosis the day after my symptoms started. Unfortunately, by then, it was still too late. I believe that the knee injury I sustained in December 2011 irreversibly damaged my autonomic nervous system. While there was pain associated with that injury, no one realized that the prolonged amount of time for the pain to subside was grossly abnormal. This is what I believe was the start of my saga. While I have been into short “remissions” twice, I have not been successful at maintaining it. In the last year, my RSD/CRPS has gone internal and affects my gastrointestinal system. More pain in another place. I guess when I think about it, internal CRPS was formerly considered Stage 4. Intractable CRPS. In my positive mind, the only way to go is up from here.
I could moan and complain some more about RSD/CRPS and all the problems it has caused/continues to produce, but nope! Today I am going to focus on the many things that I have been able to accomplish in the last three years while coexisting with RSD/CRPS.
I graduated high school with highest honors and was accepted into a world-class university to (hopefully) study Emergency Medicine. I am extremely lucky to be at such an excellent university for my undergraduate years. The environment is phenomenal, and the people truly make the experience pleasant.
I managed to get my EMT certification and my Outdoor Emergency Care certification allowing me to work as an EMT and a ski patroller respectively. I am also taking a class this December to become a Wilderness EMT, which I am really looking forward to this winter. I cannot imagine my life without EMS! It has become such a huge part of me and my interests.
I (re)started taekwondo in January 2014 at a brand new school not far from my house. I never would have returned to taekwondo if it weren’t for my diagnosis and need to find alternative ways to stay active that didn’t require running 100% of the time. What started out as my motivation/opportunity to get myself out of the wheelchair and get stronger has become so much more. I don’t know what I was honestly expecting when I made that decision to come back, but I most certainly didn’t imagine it the way it is today.
I am currently maintaining my streak of 6 consecutive years of Nature Valley NASTAR National Championships qualification, and I am looking to extend it to 7 consecutive years this season. When I started ski racing eight years ago, I knew that I wasn’t going to stop until I couldn’t physically ski anymore. It has had that addictive characteristic from day 1.
These are just a few of the many wonderful things that have happened since that fateful morning, October 17, 2012. There is one huge thing that I have left out. That is the support of my family and friends. I wouldn’t be where I am today without each and every person in my life. On this bittersweet day, three years later, I am going to drive an ambulance to complete my Emergency Vehicle Operators Course, and later I am going to enjoy the company of some of my closest friends. There’s no room for tears today. Today is all about climbing the mountain and reaching for the stars.
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!"
After a recent emergency room visit, it truly hit me in the face just how much no one knows about dysautonomia. The paramedic mispronounced it several times. The emergency room physician had heard of it, but he asked me to inform him on how to treat it. While I am more than willing to educate my healthcare providers on my chronic illnesses, this needs to change.
October is Dysautonomia Awareness Month. Dysautonomia (also known as autonomic dysfunction or autonomic neuropathy) is the dysfunction of the autonomic (involuntary) nervous system. The autonomic nervous system controls almost all involuntary functions including breathing, digestion, sweat production, blood pressure, heart rate, and pupil dilation and constriction to name a few. For many people with dysautonomia, the most noticeable symptom is the sharp drops in blood pressure and the sudden fluctuations in heart rate. This causes dizziness (often extreme) and syncope. It affects more than 70 million people worldwide, and while it can be treated, there is no cure. For many, it takes months or even years of searching for answers before a diagnosis is finally found. The proper diagnosis is critical to effective treatment, but many have problems just getting the doctors to understand that there is a very real problem occurring. There are several promising treatments on the horizon, but without awareness and funding, research is stalling.
In my opinion, the most annoying part of this condition is having to constantly make sure that my heart isn't beating too fast or too slow, as this can easily make me pass out. I also have to be very careful that my heart rate doesn't go too fast during any type of physical activity, as it can make me very sick. Despite everything I do to manage the symptoms of dysautonomia, which includes drinking at least 3-5 liters of water a day and consuming 2000mg to 4000mg of sodium a day, it is still very much uncontrolled. By being careful and getting my daily salt and water intake, I get by one day at a time. I always have to try to be in control of a body that is already out of control. I only scratched the surface of what all dysautonomia entails, so I encourage you to check out these links and feel free to ask me any questions you may have. Together we will find an effective treatment and eventually a cure!
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!