Posted 7/28/2015 4:40 AM (GMT 0)
I want to share my story about Corona and Lyme. It all started when I was 23 in the middle of training for a marathon. I was running about 8 miles a day in a park named Deer Path Park (I know, that should've been the first clue) in the woods of NJ. As Happy Gilmore would say, running is my happy place. I finished my run and noticed a deer tick on me. The deer tick already had his lunch, so I pulled the guy off and didn't think anything of it. The tick left a rash, not necessarily the bullseye that you're supposed to get, but a solid looking rash. That next day I came down with a fever which lasted two days, then everything went back to normal. I'm aware how stupid I was for not going to the doctor, but it just didn't really cross my mind. Later that month I started to get bilateral hip pain. The pain grew worse and worse and it finally forced me to stop running and see a surgeon. They took an MRI and noticed that I had a tear and impingement, so they sliced me open and fixed the right hip. Directly after the surgery I moved to NYC to take an agency job.
The healing process for the hip was very quick, which is good because my left hip was killing me. I just started this new job and NYC wiped my money out, so I wasn't looking to get another surgery, even though it hurt to walk. The next year was full of aches and pains. Some days I was fine, other days a couple of my joints would hurt. The joints that hurt were never consistent. The hip that I got scoped healed and then started to feel worse. My tolerance to alcohol for some reason started to go away. One drink would send me into full-day hangovers. The pain started to affect my personal life.
about two years later the pain was steadily growing worse. I ended up getting a new job in technical sales, which was a huge step up in my career, but it required a lot of traveling and my body was complicating everything. The joint pain stopped being sporadic and started to be constant. My hips were no longer the sole issue, the pain spread to my shoulders, my knees and my upper back. Sitting on a plane became an issue. The shoulder pain became so bad that I ended up getting my shoulder scoped because of a tear, but it didn't help.
In August of 2014, my boss told me that I was moving from NYC to Chicago. This move represented a huge opportunity for my career, but my body was getting worse. Every day presented a new challenge to me. Every day the pain would get worse. With each passing moment I thought I was going crazy. I felt like I was complaining and nobody knew that I was in pain. I sometimes didn't believe that I was in pain. The pain became worse and I started to become a hermit. Walking to the bathroom became a chore. I often thought that I wish I had a means to stop this pain. If there was some sort of noble reason to die I think I would have taken it. Every once in a while, a subway train would pass and a part of my brain would say "jump."
As I prepared for my move, I thought it was an opportunity. Any glimpse of hope would do. Maybe when I move the pain will go away. Sure, I'm away from family, but maybe the comfort is what's making me hurt. In December, I went to my company's retreat in Vegas. I was guzzling down Percocet's to help manage the agony. Every step was excruciating, every time I was in a chair I felt like something was stabbing me in the back, I kept seeing things in the corner of my eye and I was forgetting names of people I met seconds before. The first day in Vegas I left our lecture early so that I could cry in my room and lay down with a perc and a beer to alleviate the pain. I tried to get a scooter to go around the casinos, but the company wouldn't pay for a 26 year old to scoot around the casino with a company badge on. After finally getting to a lecture on the second day, I could no longer stand the pain figuratively or literally. I called my boss and told him I was going home. I booked a bunch of appointments to see if we could get down to the bottom of it.
I went to an internist to see if the pain wasn't just a crappy body, maybe there was something infrastructural. That's when I got a Lyme test. It came up positive for exposure, though I only tested positive for 2 bands on my IGg. I gave up my dream that it was a disease and decided the first priority was my second hip. I found one of the best hip doctor in NYC and he did another MRI. He found that both of my hips had tears and arthritis. He couldn't figure out why I had arthritis at an early age, but he could scope my other hip and that's exactly what he did. I left my apartment in February, found my new apartment in Chicago on March 1st and got my other hip scoped on March 3rd. Four days later I was able to limp around, even though the rest of my body was in horrible pain. I sucked it up and move to Chicago.
I finally move to a new place and my body only got worse. The pain had spread to my upper back, my lower back, my knees, my shoulders, my wrists, my ankles and the bottoms of my feet. I was constantly losing focus, I would have mid conversation brain hiccups, I was constantly twitching and cramping, I was always seeing something in the corner of my eyes and it would cause me to jump. Suddenly, I started losing feeling in my arms, my face and my legs. My body became so arthritic that every time I when I would walk you would hear my body parts crack. Every day was a struggle. Every day was a battle to get to get to my bed and lose consciousness. My heart started to skip a beat and I would feel tingling in my chest. I would get shortness of breath every second that I was alone. I would work then I would lay in bed. I would eat then I would lay in bed. When I sat up to do a presentation, the pain would get to be too much and my brain would stop functioning. My job performance was slipping and my cognitive functions were slipping too. I stopped going on dates and seeing friends. For some reason I felt like less of a person because of the pain. Why would someone want to date someone that has trouble climbing into bed? Every morning when I opened my eyes I wished that I would swing my feet to the ground and, POOF, no pain. That never happened. I would always ask myself if I was losing my mind.
Chicago became NYC. Nothing changed except my body. It only got worse. On the outside I looked fine. I'm 27, I'm seemingly fit and I have a decent job. Inside I would trade anything to take away the pain. Nobody believed that someone like me would be physically and mentally losing it. Over the next three weeks I flew to three cities. I was no longer able to stand during presentations. I was afraid that my knees wouldn't be able to hold me and my brain hiccups started to last seconds, I didn't think I would be conscious enough to find a chair to cushion my fall.
I finally went to a general practitioner. She was my last hope. I had largely given up hope. We did some routine blood screening and added a few extra goodies in the blood testing. Each blood test she ordered scared me. The only thing that made sense was RA. I read all of the pamphlets and got ready for when she called me up. about a week later she called me up with the news: you have Lyme. It's funny that it took me going to the Midwest to get diagnosed with a disease that an East Coast doctor should have caught. I didn't know what to do. I was happy because now I knew what it was, but I was completely in the dark. It felt good to tell people that I had Lyme, though. I guess it proved to me that I wasn't crazy. I probably told too many people. I definitely told too many people. The doctor recommended some infectious disease doctors and I started on a 28 day regiment of Doxy immediately.
The first two days of Doxy. Holy crap. Holy crap. Holy crap. The first dose of Doxy that I took couldn't have been a stranger experience. I was on my weekly 1:1 with my boss, who knew that I had Lyme, and mid-sentence a Doxy storm erupted in my body. My mind went completely blank. Neurons were firing in my head, but nothing was able to connect. I knew I had thoughts in my brain, but I couldn't express them. I was drooling, too. My boss freaked out, "Hey, are you ok? Do you need me to call an ambulance?" I must have been catatonic for 20-30 seconds. Finally, I come to my senses and I mutter, "I'm taking the next two days off." He was fine with that.
The first week of Doxy felt no different in pain. I felt like you do when you're sick. I sat still for a second and tried to convince myself that the pain was gone. I'm finally better. That wasn't the case. As treatment continued, I couldn't tell if I was feeling better or just trying to be an optimist. Some days I felt a marginally different, and other days the symptoms came back. After the full 28 day regiment, I felt maybe 5-10% better. My knees hurt a bit less and some of the neurological things became less frequent. It was enough to feel like I was getting better or I was just waiting for the next stone to fall.
I'm a month and a half off of the drugs. It takes time. It takes a lot of time. It's slow time. It's gradual time. I wake up in the morning and I wish that my walk to the bathroom will be pain free. It still isn't, but it's close. Walking has become easier, flights aren't as painful, sitting in a chair isn't excruciating. My knees are 50% better, my shoulders don't hurt for no reason, I'm regaining my memory, my hips still bother me, but that may be because of the surgery. My outlook took a 180. It's amazing to look back and see how depressed you were when your outlook on life isn't so negative. I remember when I was at the worse of it, I was driving in my car and thinking that I could've ended it Ethan Frome style. This doesn't mean I don't have bad days now. The bad days are certainly not like 5 months ago, but they keep me grounded. They tell me that I'm not out of the woods yet. I went to my doctor on Friday and he said that things should clear up in about 6 - 12 months, I think I'll be better than that.
One of my favorite things to do in the world is to run. For the past 4 years Lyme took that away from me. The day that I can run pain free is when I will be Lyme free. It is the last day in a four year struggle against the darkest time in my life. I honestly thought that I would never run again. I was on the verge of thinking that I wasn't going to be able to walk past 30. I didn't think I was going to have kids. I made myself a will. I was so certain that I was going to die soon that I made myself a will.
So what did I learn? Go see your PCP before you see a specialist, always do a tick check and if a tick bites you make sure you treat it. I definitely have a new outlook on life. It's one of those cliché treat every day like it's your last outlooks. People feel sorry for me that I have Lyme and ended up getting three surgeries. While it did a number on my wallet, who cares? Few things are worse than seeing your own mortality at 27. I still have a ways to go, but I remain positive. When I go out with friends I only order Coronas with lime so that when they bring me the drink I can exclaim, "I only asked for one Lyme!" Pretty soon a Corona with lime will only come with one lime.