I realize I’ve been kind of missing in action for the last couple of years, and I wanted to fill you in, tell you about my current condition and plans going forward, as well as send out some overdue thank yous.
Well as you may or may not know, I have Lyme Disease, or more specifically Chronic/Late Stage Lyme Disease. I’m going to attempt to make a painfully long story as short and vague as possible, but bare with me. I became considerably symptomatic my sophomore year at Kansas University. When I came home that summer in 2014, I continued to spiral downwards. I went to numerous specialists and had countless medical exams and tests. I had an array of symptoms at this point but some of the main ones were chest/heart pain and palpitations, extreme physical and mental fatigue, brain fog, and muscle spasms/twitching.
I eventually went to Mayo Clinic but unfortunately left without answers. It wasn’t until September of 2014 that I was finally diagnosed with Lyme Disease and began treatment. After months of various antibiotic combinations without any progress, I discontinued them. In January of 2015, I switched to who I believe is the best Lyme specialist in the Chicagoland area. We agreed to try some alternative treatments. After months of basically no progress, my doctor concluded that antibiotics were going to be necessary. So in June 2015, I began on a strong regimen of antibiotics. Four weeks later the “Herx” reactions* became unbearable and after a couple severe panic attacks, we decided to stop the antibiotics.
A week later, while I was recovering, I had, from what I understand, an extreme inflammatory response in my brain. I went from about 15% of a normal functioning adult to like 1% or 2% literally overnight. For lack of a better word, my brain essentially CRASHED. I could barely walk or talk, could not read, write, get up to use the bathroom, watch TV, use my phone, listen to music… You know what, it would probably be easier to list the things I could do, which was sit up for a couple hours a day, look at pictures or out the window, listen to my mom speak a couple sentences at a time, and eat 4 tasty meals. My meals consisted largely of vegetables due to my severe digestive issues, which were exasperated by being bedridden.
I know what you’re thinking at this point: “By God, will he ever eat Taco Bell again?” To save you the suspense, I just recently had a couple Crunch Wrap Supremes and Doritos Locos tacos. This was after stopping cold turkey two years ago, a sales decrease that probably lowered its stock prices. I think it’s safe to say that Taco Bell is no longer off the table, both literally and figuratively. But don’t buy into Taco Bell’s stock just yet, I’m still on a very strict diet.
Anyways, I’ve been recovering from this tragic “crash” for the last 14 months. In some ways I am much better than before the “crash” but in other ways I’m still the same or worse. Back in October 2015 we flew to Jemsek Specialty Clinic (JSC) in Washington D.C., and I began treatment under their care. Progress has been slow and extremely unsteady, but I have come a long way since “the crash”. Right now I would probably say I’m at 19% of a normal functioning adult. I have no idea how I got that number, but it feels about right. In the last few months I’ve been able to tolerate light exercise or what you might call “movement”. Little by little, I’ve been taking on more daily tasks and walking more every single week. I still can’t stand up for very long, so when I go out I rely heavily on a wheel chair. But hopefully soon I will no longer need it!
I had lost a lot of weight due to my digestive issues, but in the last 4 or 5 months I have gained 20 pounds back. Right now I can read, write, listen to music, go on the internet, and watch movies but only for short bursts. It’s really hard to tell when I’m overdoing it. Even when I can, its even more difficult to cut myself off. I still have extreme anxiety, but I’m getting a better handle on it, kinda. Like by no means would I call myself a patient person, but I am often referred to as a person’s patient. That’s almost the same thing right?
Since October 2015, I have been living in a beautiful apartment complex in Lombard overlooking Yorktown mall. This will be perfect, because when I start walking more there’s an entire mall just a stone’s throw away. I absolutely love my apartment and could not imagine a better place for healing! Everyone here is super friendly. My next-door neighbor, Mary, has an English accent and lives with her three daughters. Right now she is courageously battling cancer and has definitely been an inspiration for me. My career aspirations seem to come and go with the seasons, but right now my dream is to eventually go to nursing school. No, not because of the girl to guy ratio, which is 15 to 1 by the way. It’s because I want to serve and take care of others on a very human level and with nursing you can be paid for it.
So the plan going forward is to begin a low dose of antibiotics in one week. These particular antibiotics are unlikely to cause much of a “herx” reaction* but in the same sense it’s unlikely to lead to quick improvement. After 2-4 months, depending on how I tolerate it and how much improvement I see, I will then begin JSC’s more aggressive pulsed antibiotic therapy. My family and I believe this pulsed antibiotic therapy will play a huge role in ultimately beating this disease as it has for thousands of patients at JSC. Nobody in the nation, or the world, really, does it like they do. They are experts when it comes to antibiotics and are at the forefront of the field. I could not be in better hands as I prepare once again to start antibiotics.
I obviously couldn’t have gotten this far on my own. My mom has been an angel to me over the course of my battle. I don’t think I could ever repay her for everything she’s done, not that she’d even let me if I tried. She’s the strongest person I know and has to literally nurse me back to health, or towards it. My sister and Dad have been doing everything they can to help and provide constant support. I could not have gotten this far without them. I obviously have to thank my main man, the Holy Spirit. I know He was with me in the depths of my despair and has helped me through my worst and darkest days. Which, for the most part, are behind me now and hopefully there to stay.
Sometimes I think this whole thing is just one long terrible dream. That if I click my heels together I will wake up back in Kansas beginning my junior year. Then I’m reminded that Dorothy’s Oz wasn’t all that bad. In fact, it was probably better than her home in Kansas. Sure, there were flying monkeys and a couple wicked witches, but she had her dog Toto there! Plus how about the Lollipop Guild and those awesome Munchkins? My point is that maybe eventually you have to start living through the dream you got and stop dreaming of a life you don’t. Because whether we like it or not, we’re not in Kansas anymore.
For so long I’ve wanted to respond individually to everyone who has helped me in this battle, but I’m not sure that’s possible in the near future, and I don’t want this feeling of lack of gratitude to keep me from reaching out. So while I know this doesn’t suffice, I’m going to send out all my thank yous now, and that’s just the best I can do. So here goes:
Thank you! Thank you! Thank you!
To my Aunt Fran and Uncle Larry for opening up their home and showing me unconditional love; to my Aunt Cathy for helping me kick off my lyme journey and for turning me on to JSC; to my good friends Ali and Jill and my Cousin Katie for all they have done for me; to Aunt Irene, Aunt Colleen, Mr. Gornick, Uncle Bill, and Uncle Jimmy for all the help they’ve given me through my journey; to those of you who sent gifts or cards, your words have truly meant so much to me and have helped me through some dark times; to everyone who has been sending thoughts and prayers keep up the good work! I feel so blessed to have so many people who care about me and want to see me get better!
Now that I’m able to write more, keeping you up on my progress is the least I can do. That is a lot of the motivation behind this blog. I hope to post something every two or three months. So until next time, here’s a joke and quote:
Why did the former surfer treasure her shark tooth necklace?
…Because it cost her an arm and a leg.
“A heart is not judged by how much you love but by how much you are loved by others.” -The Wizard of Oz
* “Herx” reaction – an immune reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off (by antibiotics in my case). The released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.