See me, not my disease
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I am now 40 years old. In 1996, when I was 16 years old, I began experiencing physical symptoms that I couldn't explain at the time. I was growing more and more tired daily and had multiple hard, swollen glands (later found out were lymph nodes) beneath my armpits and around my neck. I also had a serious sinus infection for a duration of six-months. At this time, I was living with a parent who did not believe in relying on doctors for medical care but instead relied on God which is what he chose to do for my situation. He prayed over me and had also taken the guidance from a 1950's medical book from the thrift store that explained (what he believed) swollen glands were a symptom of glandular fever and nothing more, nothing less, and that it would pass.
I got used to the swollen "glands," and pushed through the tiredness with increasing my cups of caffeine (coffee and diet soda) over the years. I was no longer in that home as of 1997 and began regularly visiting a primary doctor in 1998, but I didn't talk about the abusive situation I was in (it would be more years down the road before I got to that point). Over time, I had started to become somewhat irrational, impulsive, and hyper. I was married at the time to a patient man who didn't think there was anything unusual about my behavior (that it was just who I was). Several things were happening with my health, but I didn't know it just yet.
In 2006, the fatigue took over my life again. I would wake up and get ready for work, work my daily schedule, come back home, and sometimes went straight to bed. This routine went on for months. It affected my marriage, relationships, and my overall feelings of pride and confidence. One day, while pitching something at my job, I couldn't lift my arms. The pain was so intense in my shoulders, that it felt like I was being stabbed in the middle of each socket with an icicle. The CFO recognized that I was in pain and wouldn't let the presentation continue. He called an ambulance and off I went to the ER. Hours later, I received the diagnosis of Lyme Disease.
There's a lot that happened afterward including nine-months of doxycycline antibiotics (which we now know should have never been prescribed for that long), receiving no relief from the pain and brain fog, and eventually being diagnosed with Fibromyalgia because the doctor(s) didn't know what else to do with me, so they sent me off to another pain center. It would take years before I finally received answers and help for managing my symptoms.
One year ago, in 2019, I found out that I had ADHD since childhood, and Lyme Disease exasperated the condition. Since then, I have been in treatment for ADHD involving both medication and therapy, and it feels like a light bulb was turned back on that had been off for years. I have struggled with obesity, OCD, relationship issues, have lost people I love, and not piecing the right puzzle pieces together for a better path. I have had a lot of successes, but I've also had a lot of failures along the way. I am sure I will have both as life continues, but I'm hoping for more successes than the latter. Working on my health is of the utmost importance to me now, and with the right doctors helping me, fitness and nutrition are helping with the pain and my overall well-being. I've lost a great deal of weight and find myself doing things I hadn't been able to do in years (like running through the neighborhood, lifting regularly, and regularly paying attention to my macros and nutrition). It's a learning process though, and I have a lot more to learn but I am so happy to finally be taking care of "me." It took a long time to get here. There's more to this story but I don't want to take up too much of your time as my reader today. If you are struggling with symptoms that cannot be explained, I strongly encourage you to never give up on finding the right doctor to help you. It took 13 doctors to finally help me with my late-stage Lyme Disease and ADHD. Also, I do wish I had gotten emotional help at the beginning of my diagnosis with Lyme Disease, as the damage that was done to my brain plus the ADHD could have been caught sooner. Good luck and never give up. People need to see us for who we are, and not just our disease that makes us different than the "norm." God bless!
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