My daughter was diagnosed with Lyme Disease almost 2 years ago. I have briefly written about this (sometimes with humor) but I thought it would be better to hear directly from Morgan herself. Because May is Lyme Disease Awareness month, I wanted to honor her and everyone battling this disease by posting her experience in her own words.
The article was originally posted on The Mighty titled “Lyme Disease” by Morgan Darrow.
“The good news is we know what’s wrong with you. The bad news is, you have Lyme disease.”
After 6 months of trying to figure out why I was getting insanely bloated to the point where my appendix was mistakenly taken out, constantly getting a weird tingling feeling up and down my body, achy joints, memory impairments, failing every test I was taking in school, and overall feeling not “right,” I finally had not only the answer to my problems, but a solution to it as well. Three weeks of antibiotics and I would feel like myself again. It’s like having strep throat or a cold, not a big deal.
Except that is not the case. I can’t and don’t blame people when they don’t fully understand the pain I have endured over the past year and a half. Lyme disease isn’t marketed to the public as a life-altering chronic illness. The reasons for this I won’t get into, but May is Lyme disease Awareness Month so after a lot of convincing and reflecting, I decided I would write this, not for sympathy or attention, because really after all of this I know who was a good friend or supporter, but more for people to really understand what it’s like to live with a chronic illness.
I’ve been sick for over a year and a half, and the first year was a very different experience than the second. When I first got diagnosed, I didn’t understand why my mom was so persistent in finding a doctor that specializes in this field, otherwise known as a Lyme Literate doctor. Why couldn’t we just stay with my pediatrician? There is truly no way for me to put into words how amazing my mom is and has been throughout all of this. I really mean it when I say I honestly have no idea how I would be where I am without her. I don’t even know how she knew the extent to which she did. For instance, making sure we found the right doctor(s) when I first got diagnosed. She called everyone she knew who had the slightest amount of insight into what this long road ahead of us would entail and was open to any and every piece of information someone offered, including random people in the supermarket she came across. Again, something I did not understand at the time because to me, I would be better after 3 weeks of antibiotics. Well, 9 months, 3 doctors, 1 in-home massage therapist, 2 infrared saunas establishments, too many Epsom salt baths to count, and a complete lifestyle makeover later, I was only on the road to recovery. My senior year of high school was truly a blur to me. The number of days I spent sleeping more than I was awake are too many to count. This was supposed to be the “best year” of my life so far, yet rather than spending time with my friends, I was laying with a castor oil pack on my stomach questioning how I was supposed to go to college the following year. I woke up in the morning not knowing how I was going to feel when I got out of bed that day. Was I going to be extremely nauseous? Was I going to have a migraine to the point where I’d have to lay in my bed in darkness the entire day? Was I going to have to limp because my joints were too achy to put pressure on?
I am a very private person. I don’t like people to know my business and I don’t like people to really ask me questions. It’s ironic because those that know me, know that I am the nosiest, most inquisitive person. I am always eager and curious to learn more information. So it is partially my fault when I would get upset that people didn’t understand what I was going through.
Another thing about Lyme disease and most other chronic illnesses is that “treatment” isn’t your typical take this and you ”feel better”. For one, you will 100% feel worse before you feel better. Second, there are secondary changes and treatments that need to be completed before you feel “normal.” I used to play competitive soccer. I’d train 4-5 times a week, have games on the weekends, and I would still have energy. I was always working out in some capacity, eating mostly whatever I wanted. With this, there was no getting out of bed let alone working out. Eating? No gluten, no dairy, no sugar, no soy, no food additives, no salt, no oil basically no nothing. In “kid” terms, no late-night pizza with your friends, no ice cream, no french fries, no candy, and no doing anything spontaneous that could cause me to have a flare the next day. In addition to this, I’ve taken more supplements and pills than I think my 83 year old grandma does. Lyme isn’t just Lyme. Lyme affects your thyroid, which subsequently affects your energy. Lyme affects your vitamin levels. Your cells’ ability to rebuild. Your livers’ ability to detox. I would go from the infrared sauna to Epsom salt baths to my lymphatic drainage massage therapist to try and relieve my pain all in one day. I probably cried at least once a day, most times before I fell asleep, again questioning if I’d ever feel normal.
I was diagnosed at the end of November, went to an infectious disease doctor in December, and finally found my amazing doctor in February. In February, after being diagnosed with Candida (an overgrowth of yeast probably developed because of antibiotics without a probiotic) I decided it was time to take matters into my own hands if I wanted a true shot of going to college. My mom had found the right doctor and I would research every free moment I had looking up ways to get better. I did every weird voodoo thing you can imagine and was open to anything to be done with this chapter in my life. Despite the flares up in between, the many breakdowns, mood swings, sadness, envy for my friends who were living normal lives, I slowly began to get better. Leaving for college that August, I had my “toolbox” ready. I had an infrared sauna I would go to in Wisconsin. I knew what I could and couldn’t eat. I was on the right medicine. I lowered the number of supplements I would take and I had a tiny bottle of healthy titos and Lime juice ready for my nights out. I was ready, I was optimistic, and I was finally done with this sick chapter of my life.
Until I wasn’t. About a month into my first semester of freshman year, everything came back. I couldn’t understand what was going on. Why I was so sad some days, so happy others, so emotional, so inflamed, so nauseous, so lightheaded, the list goes on. Obviously, before leaving for college I had blood work done, I was fine and my doctor assured my mom and I that I was healthy. That’s why when I came home for the first time, an absolute mess, my parents thought that naturally, I was having adjustment issues. I knew this wasn’t that. I wasn’t homesick and I was fine until this point. I told my mom I woke up and went to bed every night and morning with debilitating anxiety so what else was she supposed to think? One weekend in October, I came home to see my parents. That Sunday night I flew back to college, my parents assuring me I was healthy and I was fine and I just had to make it until Thanksgiving which was only 5 weeks away. I had gone to camp my whole life and 7 weeks flew by so I convinced myself it would be fine.
Long story short, I didn’t make it to Thanksgiving.
When you are sick like I was sick, you know your body. And I knew that these were not adjustment issues. I knew there was something going on inside my body and something that was causing me to act like this. The culprit: MOLD. Mold in the apartment building I was living in. Mold and autoimmune diseases go together like oil and water. They don’t. This time around being sick was different than the first. I was done with this. I had already spent my entire senior year sacrificing so that I could be myself again, working harder than I had in my entire life to get to the point I did, and then this happened. I became resentful and I became angry. Everyone else living in this building was fine, but I was sick again? It didn’t seem fair. It wasn’t fair.
This again is where I question how my mom was able to handle this. This was not what she envisioned for me and I’m sure for herself as well. She was also trying to get past this year of hell we had just gone through together. I could write a whole other story about all of the crazy experiences my mom and I have gone through together in great detail. For instance, driving 2 and a half hours away to go to a “different” type of doctor where before we went inside I asked her if she thought the person who sent us was trying to get us to join a cult. I truly don’t think there are enough words to describe my mom. She is determined, she brings humor into every situation we’ve gotten ourselves into, like when we lived in a hotel together for 2 weeks in Wisconsin, and her support is unconditional. I truly mean it when I say I am so lucky to have had her through this. I don’t know what I would have done otherwise. She is the one person who never questioned me, pushed me too far, or made me doubt myself throughout this whole experience. And yes, my dad and sister have been amazing too and I am so lucky to have had the support and empathy from my family throughout this because without them, again, I would not be where I am today.
Having to come home from college, face the fact that I wouldn’t be able to go back second semester while all my other friends flaunted their crazy nights out, and then eventually admit to myself that I needed to transfer was very hard to face. Again, I don’t blame my friends, I would have probably done the same thing had I not had to come home, and I just as easily could have not looked at social media after I knew my friends were going out the night before.
After finally facing reality and realizing I was sick again in a whole different capacity since the levels of mold absorbed into my bloodstream were so high and so poisonous that had I stayed any longer I am honestly not sure what would have happened to me, I was determined once again, to beat this.
Getting sick again was hard as different symptoms kept appearing. I couldn’t shower without clumps of my hair falling out. My migraines got so intense that I couldn’t lift my head without getting so dizzy. Fatigue, tingling, joint pain, anxiety, brain fog, extreme nausea, and insomnia yet complete exhaustion. I was sad, I was confused, and I had relapsed. Except now I didn’t just have Lyme disease, but also Mold poisoning, Mast Cell Activation, Sibo, and once again Candida.
So now, 5 months later, after more hard days than not, I can finally say I am on the road to recovery again. It took many more mental breakdowns, tears, and tweaking my eating habits again because now I couldn’t eat moldy foods or foods with high histamine like peanut butter, bananas, and strawberries, but I’ve gotten through it.
I know that Lyme disease is something that will always be a part of me and my story, but it is not something I will let define me. And the last thing I will say is- It is Lyme, not Lymes, there is NO “s.”
My daughter has Lyme disease. It’s something I haven’t written about because generally I try to keep things light and funny and this is not light or funny. But that is for a different post. Throughout my life humor has carried me through any crisis I may encounter and to this day it is my go to in my “toolbox.”
I wish I could say this was joke but sadly no its just my life. So now I am left wondering: Is this some ticked off relative (no pun intended), Did the guy I hit follow me home? Is this some deer ritual ? I was half expecting to see MURDERER spray painted on the hood of my now wrecked car. If you zoom in you can see he was clearly staring me down, obviously mad that I took out a member of his team so close to the holidays. And all I could think is how many freakin’ ticks is he letting loose all over my lawn?
Obligatory Tailgate photo, Actual result of tailgating like I am not a member of AARP
(Parents weekend 1989)
Like many people I have been feeling morose lately. All my New Years goals and ambitions went the way of past New Years goals and ambitions. The thing that makes it worse this year is that this was the year I decided to stop procrastinating and get moving. Write more blog posts, clean out my house, get in shape…yada,yada,yada. My dog being diagnosed with a degenerative disease also makes it hard. Last June, we were on a walk and he fell, more like collapsed in front of my house. Needless to say it was high drama. The one thing that stuck out in my mind was not how scary it was but that a neighbor drove by my entire family and did not stop to ask if everything was okay or did we need help (obviously no and yes). As she passed us in the dust her “magnet” on the back of her car was etched in my memory. She was a marked woman.
Like every other parent there are a few things during the course of my day that give me stress. The texts from school (all day long) begging me to bring whatever forgotten item my kids may have left on the counter, navigating the parking lot at the supermarket and of course what is for dinner. Out of all the “troubling” things I have to deal with during the day, what I am making for dinner may rank at the top of the list.
