I woke up one morning and couldn't move.
I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn't reach my phone so I lay there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom's number, I tried to stand up, and that's when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on.
I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn't take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said, "Hello, I'm your spleen, and I'm really pissed off!" You'd think that'd freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week.
I believe it was three or four days, and things were continuing to get worse, and I could barely stand up. I didn't tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven't been back since. Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After one week of lying in my parents' bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I'd previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.
Chapter Five: An Uphill Battle
I celebrated at first. I thought, "Finally, I know what it is. I can treat it, get better, and move on with my life." Unfortunately, this has been far from the case. We initially tried an antibiotic protocol, but I only lasted ten days on it. I came to find out that treatment for Lyme is much like treatment for cancer. Your entire body becomes toxic. Because of this, I ended up in the ER, with frightening blood pressure and heart rate issues. That's when I began to have spells where I'd start to black out, and get stuck in between that phase between consciousness and unconsciousness.
On the tenth day, after lying awake for an entire night having seizure-like episodes, and after having had to be practically carried to the car after a doctor's appointment, I called it quits. Since then, I've tried a multitude of alternative treatments, some of which have sent me straight to the hospital, and others that haven't had much of an effect. Things began to snowball again one year after diagnosis, as my immune system began to become increasingly suppressed.
In May of 2009 I contracted an 18-day stomach flu. Shortly thereafter, I contracted what the doctors think was either viral meningitis or the swine flu, and my immune system was so confused as to what to do that instead of fighting the virus, it had an allergic reaction to it. With a fever of 103.5, I went into anaphylaxis. My throat and lungs began to close up, I broke out into a rash that covered my entire body from head to toe, and my lips and tongue swelled and blistered. We were in the emergency room every day for four days straight, because it just kept getting worse. All they could do was tell me to keep an epipen with me at all times, and if I stopped breathing to call 911.
Chapter Six: And The Surgeon Said "Oops"
After that, we decided that it may be time to try antibiotics again. I gave a few a shot, and endured hell for one whole month, only to develop autonomic seizures, dysautonomia, and chemical sensitivity. After finishing the bottles, I had such bad dysautonomia that I could barely stand up again, and my chemical sensitivity was so bad that I could no longer leave the house. We needed to take some sort of action, and my doctor was really at a loss about what to do. He decided to see what would happen if he just slammed my body with IV drugs, to try to knock out massive loads of infection.
He warned me that I'd become alarmingly sicker, but he promised that I'd come out on the other side. So the doctor set me up to have a portacath surgically placed in my arm (usually they're in the chest, but I have no fat there, just ribs!), which would run a catheter from my arm to right outside my heart, so we could infuse the antibiotics. Because of the dysautonomia and MCS that I developed, surgery was going to be quite a tricky task. I opted to be awake during the surgery, and I opted out of the morphine. This meant that I only had local anesthesia and a small dose of Ativan to keep me calm while they cut me open and threaded a tube to my heart.
This is something that I probably won't be signing up for twice. The surgery seemed to go fine, until the surgeon left the room and it was time to get me off of the operating table and onto a bed to be transfered to recovery. The minute they tried to move me, all hell broke loose. My heart started beating irregularly and my heart rate shot up to 145, and any time they tried to sit me up I'd have pains and unusual sensations surge through my chest. They sort of scooted me onto the bed anyway though, and transfered me to recovery.
I lay there for two hours, while nothing improved. They tried to tell me that it was "probably normal," but I insisted that though I feel like crap on a daily basis, it's usually not THIS bad. They decided to xray me just in case then, and upon viewing the xray, the surgeon said "Oh my God, how'd that happen?" There's one word that you never want to hear while in surgery. It's "Oops." There are also three words you probably don't want to hear either. "Oh My God."
It turned out that instead of the surgeon threading the catheter TO my heart so it could sit comfortably outside of it, he accidentally lodged it deep inside of my heart, where it certainly was not meant to be. So, I had emergency surgery (awake) to have the port removed, and at that point, I vowed to never have elective surgery again. I now have scars on my arm to remind me why.
Chapter Seven: Just The Beginning
That brings me to where I am today. I'm treating with a new practitioner, who is using a combination of alternative and conventional therapies to get me well. It's going to be a long, trying road, but I know he can get me there. I still can't leave my house yet (aside from a trip to the doctor), but this wonderful practitioner has gotten me to the point where it's at least comfortable to sit in a chair again. I no longer feel like I'm dying. I know this doesn't sound like a lot, but for me, this is huge. I have the utmost faith that I can get through this. It's just going to take a whole lot of strength, patience, and optimism. This is truly a humbling experience.
At times it's hard to see the light at the end of the tunnel, and to focus on what's important, but at the end of the day I still go to sleep and thank God for every day that he's given me, and for every breath that I take, even if it's a labored one.
The biggest lesson I've learned is that it's really the little things in life that are the most important, and that if you focus on those things, you can find the positive aspects of your life no matter what the circumstances are. I may not be able to leave my house, I may have to eat the same liquidy foods everyday, and I may be stuck lying on the couch, I may have a list of 57 symptoms, but I'm still optimistic. And one day, when I'm back out in the world, truly living again, nothing is going to be able to bring me down.
So, on that note, I think I'll end. Please forgive me for how long this post is, and thank you so much for bearing with me through it. But truth be told, it's really just a snippet of what I've been through. If I just reach one person, or educate one person, or make just one person smile, then my mission is accomplished.
Candice Mitchell, California