Dedicated to Softball Girls with Big Hearts & Big Dreams
Nov 23, 2019
As some of you might remember, about a year and a half ago I wrote a social media post complaining of symptoms I was experiencing in desperation for some type of answer or direction. Many people responded with compassion and comfort, but one message stuck out to me the most....More on that later. Those symptoms I experienced and wrote about in that post continued to progress throughout the course of time to present day. During this time, friends and loved ones suggested to me that maybe I was too busy in life and that it might be contributing to the problem. I began to believe that it was true because I no longer had the energy to do those things. Due to this fact, I gave up coaching soccer, gave up opportunities that came my way, severely cut back my softball lesson schedule and did the bare minimum I could. Nothing helped. Things kept getting worse. I devoted countless hours to researching, praying, going to doctor after doctor and doing anything I could physically do to get better. After two years I finally have an answer. 2 months ago I was diagnosed with Lyme disease. Little did I know that the person reaching out to me from that Instagram post over a year would eventually play a key role to me getting diagnosed and recovery, a process which took two agonizing years.
Rewind back to two years ago. No, I don’t remember a tick bite or a bullseye rash. Those bugs can be extremely tiny and often go unnoticed. The smallest ticks are the size of a period at the end of a sentence. Only 30 percent of people with Lyme remember a tick or get a bullseye rash. At the time I started experiencing symptoms, I had a pretty busy schedule. I began to feel achy every night. I felt like I was getting some sort of flu bug. Symptoms would be brought on at night but then disappear by morning. I would give catching lessons after work and my legs would feel like cement afterward. I would lay on the couch with my legs up to get them to feel better. I must have just been overdoing it. Maybe all of these years of using my legs as a catcher and marathon runner were catching up with me. I thought I would recover on my own eventually, so I didn’t see a doctor. I thought this infection that I had must have needed some time to pass. March came along and softball season started. I began to lose my energy and grew to be very lethargic. I started to get weird electric pains all over my body.I felt as though I was getting poked with a needle or stun by a bee. There were times when I felt like there was a bug was crawling on me, but there was none. At times my leg would feel wet or my neck would burn but the leg was not wet when I touched it with my hand and the neck was not warm to the touch. Maybe I had some sort of neuropathy, I thought, but it didn’t make sense with the fact that these sensations were happening all throughout my whole body and migrating. I did not go to the doctor until after coaching softball season when I had some time to reflect and started to get concerned something major might be wrong.
After the softball season, my energy was zapped. I would sleep all day long but never felt rested. I remember that if I had a few things to do in a day I would schedule naps in between each thing so that I could get through the day. I tried to workout but I was not myself. I remember going to the gym and leaving a workout in the middle of it because I could not finish. This was totally unlike me. My muscles would cramp and I fatigued within seconds. A year prior to this I was running and training for marathons, but now I couldn’t find the energy to get out of bed. It took me all summer of focusing on recovery to finally feel comfortable doing a 30 minute workout, but even then if I worked out more than a day in a row I was toast. All I did was lay around all day. My hair began to break off and my nails became brittle. It was months since I had plucked my eyebrows. The hair just never grew back.
The school year began again and I started to feel more recovered from summer rest, but still not my old self. I decided to really work at my health and make it a priority. For 3 straight months I ate extremely clean unprocessed foods, limited sugar and gluten and even fasted for 3 days straight each month for 3 months in a row. Although my energy felt better during this time, the neurological symptoms kept progressing. I began to get muscle twitches all over my body. My left foot began to feel weak like I had foot drop and I began feeling like I had a current running throughout my body. During this time I was seeing a rheumatologist and neurologist. All of my tests were “fine” or slightly abnormal without being able to point to anything substantial. Nothing seemed to be “wrong.”
During this time, there were people that tried to comfort me after blood tests came back negative by saying, that’s great news that everything came back negative. Well…yes and no. The more things kept coming back negative, the more defeated I had felt and the more I felt as if others were skeptic of my symptoms. Many people would say, “Well, you look great!” But looking great on the outside does not always mean that everything is great on the inside. I felt as if there was a poison in my body that kept spreading and progressing but no one could see it. How long would it progress before someone figured out what was going on? I noticed I began to get heart palpitations. At times my throat felt extremely tight. Eventually my vision became fuzzy. I began seeing double when I looked to the side and my sight became like an old static television. My once perfect vision seemed to be dissipating and I seriously thought I was on the path to going blind. My hearing was next. Constant ringing in the ears when there were loud noises. As a PE teacher, I encounter loud noises daily, so this was a common occurrence. I had intense feelings of passing out and dizziness. I could not think straight and became extremely overwhelmed with planning things and organizing things. I could not think past the current day. This was not like me at all. Normally my strength is my ability to plan and get things done. My life and identity was crumbling before my eyes.
I remember seriously considering not coaching softball that upcoming season. I know that I get a bit crazy when it comes to softball. The days get long and I give all of my energy to getting the girls the best possible outcome. Would I be able to give the girls what they deserve for the season without compromising my health? I went into the season feeling pretty good, but very disorganized. Games began and eventually I felt as though I could not keep up. I was overwhelmed. During the season my twitches got worse and the current I had felt in my body developed into physical tremors. Did I have Parkinson’s? Did I have ALS? These thoughts always raced through my brain. My wonderful husband picked up my slack at home, but it was a struggle for me to shower when I got home from games and practices or even change into pajamas. I would walk in the door and go straight for the covers. I had no clue what was wrong with me. Neither did anyone else. All I could do was research and pray to try to find hope or any kind of answer.
Softball ended and summer came around again. I repeated my recovery of sleeping all day which I had done last summer. I started at zero again. I went through the whole summer working to feel better. I began seeing a naturopathic doctor that was highly recommended in our area. As many holistic doctors do, she began looking at my hormones, such as my adrenal function. We were working to pinpoint if that was what had started the decline of my poor health since so much of it was related to my energy and exertion. Although after a few months, my energy started feeling much better, my symptoms did not subside. At a follow up appointment I remember the doctor saying that the symptoms I was exhibiting sounded a lot like Lyme Disease. Although I had a couple Lyme tests before that came back negative, what she said stuck with me. As I was Googling away a few nights later (I know people say not to Google things, but when you have no other help or answers, you have no other choice) I remembered the person who reached out to me on my Instagram account after I posted about my symptoms in a moment of desperation a year prior. At the time he sent me some videos and said he believed the symptoms I was describing were similar to those of Lyme disease. After telling him that I did not have Lyme because my Western Blot test only had 3 bands on it, he said it could be diagnosed in other ways or with other tests. I remember thanking him and dismissing his comments and never watching the videos, but never really forgetting his message. Over a year later I was sitting on my couch thinking about my naturopathic doctor’s words and what this man who reached out had said. It was a lightbulb moment for me. I scrolled back a year in my social media messages and found the message he had sent me. I immediately watched the videos and remember feeling like what I was watching was my exact life. I reached out to the nice man who had reached out to me a year prior and he replied back right away explaining everything to me and helping out in every way he could. He helped connect me to a great Lyme specialist where I got diagnosed. The specialist fit me in for an appointment within the week. Although the doctor was 6 hours away, I made the journey to see him. People from all over the world go to see him to recover. You see, the care in which you get for this disease is crucial to your recovery. The problem is, there are many doctors who do not treat Lyme disease the correct way. It is imperative to do your research on the matter. I began treatment immediately and have been under treatment for 2 months now. I have cut out all sugar and gluten in my diet because the bacteria feeds on it and it creates a favorable environment for it to grow.
The realization that I had Lyme made so much sense. You see, the worst part of this whole process was not knowing what was wrong. I knew it was something serious about a year into symptoms as they kept progressing without any periods of relief. I came to terms with the fact that I was going to be diagnosed with something serious but just wanted to figure out what it was. One night as I was having heart palpitations while lying down to take a nap from exhaustion, I wondered if I’d pass away in my sleep from having a heart attack with no one ever knowing why or what was wrong with me. The sad part is, that does happen to untreated people with this disease after the bacteria begins to attack the heart. The more I experienced the progress of the disease, the more I felt as though there was a poison inside of me slowly taking over. Sure enough, I eventually found out I was right. The worst part was just letting it happen and feeling helpless.
Interestingly, I soon learned that talking about Lyme disease diagnosis wasn’t always met with warm and fuzzy reactions. Everyone has a different opinion of what it is and how it should be treated, even some friends with in depth medical backgrounds. Along with those are also very supportive friends and ones with medical backgrounds that do get it and are fully supportive. It is so interesting how controversial some illnesses can be. Until you have lived it or done in depth research for yourself, no one truly understands what is going on exactly.
Although I experienced a Herxheimer reaction in the beginning stages of treatment, I have since had weeks of time during treatment where my energy is back and the mental fog has been lifted. A Herxheimer reaction is when the bacteria begins to die off, which exacerbates the disease symptoms for a time before feeling better. In other words, you begin to feel worse before you feel better. In the time since receiving treatment, I have had days and weeks of time where I feel like I’m my old self again and that has brought me so much joy and hope. You never know how poorly you felt until you begin to feel better. My coworker told me last week at work that she believes I turned a corner in my recovery based on the return of my old energy and work ethic again. I know that my days ahead will not all be rainbows and that the recovery of this debilitating disease can be an up and down battle, but I am an overcomer and I am in this fight for my life. With God’s help, I will win it.
It enrages me to know that there are so many crippled by this disease that go undiagnosed for years or even decades, much longer than what I had to go through. My heart aches with all that is in it for the young children that get wrong diagnoses or wrong treatment while getting sicker and sicker. There is a phenomenal documentary on iTunes called “Under Our Skin” that lays out the incredible controversy surrounding the disease and why there has not been proper care and treatment for those affected. It is absolutely enraging and deplorable on part of a group of doctors that are only trying to protect their egos and pocket books while putting the lives of innocent humans at risk of dying from this illness and living lives in unimaginable disabilities and pain. Thank God for the doctors that are doing the right thing, while risking their licenses and livelihood, and fighting for the lives of millions of ill people. There needs to be greater awareness. There needs to be more voices in the fight. Lyme is everywhere. Infected ticks are too. People can get infected in all states in the continental US. Thousands of people are walking around with this disease not knowing they have it.
Lyme is the great imitator. It can mask itself as Alzheimers, MS, Parkinson’s, ALS and so many other mental and physical diseases. In the documentary, “Under our Skin,” there were biopsies of 5 people who died with Multiple Sclerosis and all 5 were positive for the Lyme bacteria. Could the bacteria have been the cause of the lesions on their brain and spinal cord? It is quite an astounding similarity. The bacteria is a spirochete, which means that it is a spiral form and can penetrate any tissue and spread to all areas of the body. When taking antibiotics, the bacteria can form a biofilm around it to resist antibiotics and lay dormant until a more favorable environment for the growth of the bacteria takes place. Every patient might require a different approach to treatment. Along with the bacteria, Borrelia Burgdorferi, that is transmitted to a human in Lyme disease, many coinfections can also be transmitted. Those confections can range from hundreds of varieties, all which might mean different treatment options for the individual. This is why it is so imperative that someone seek out the right Lyme Literate doctor from the beginning.
Through the 2 years of symptoms I encountered a ton of doubters. There were many people who believed that this disease was all in my head or that I “worked out too hard” as an athlete or that this was all happening because of old age…even though I’m only 31 years old. I felt as though I really couldn’t speak about my symptoms to certain people and that many had a glazed look over their faces as if they were not impressed by my complaints, seemingly dismissing me as being a wimp. After all, I looked fine. After all, everyone is tired and everyone has aches and pains. On the flip side, I had lots of people encouraging me through this time. If it was not for my friend, Lindsay, a family member, Jill, and my coworker, Pags who lived this disease with me, listened to me complain, checked up on me constantly, offered all the help they could and researched with me, I would have not gotten through this. They encouraged me to keep fighting when I did not have the energy to fight for myself. They told me I needed to be more stern with my doctors and fight for my health. They encouraged me to take the leap of faith and that these symptoms were serious when I began to doubt my own sanity. They didn’t complain when I was moody, forgetful or just useless. It is so important to have people in your life like that. I will forever be grateful for their impact on my life in this time. Be that person to someone else. Listen to them, empathize and be that help and voice of reason. Believe them. I would be remiss if I did not mention a thanks to my parents for their endless prayers. Of course, then there was the wonderful man, Rob who reached out to me on social media. He has been a mentor to me through this whole process of diagnosis and recovery. He helped me find a trusted doctor, answered all of my questions, walked me through my doubts and continues to help me even now. I am forever grateful and indebted to him. I’m pretty sure he was a God send to me.
My diagnosis date, September 28th was not a bad day in the least. It was the culmination of 2 years of agony and the beginning of my recovery. It was the first day of the rest of my life. It was a day in which I started the journey. A journey where I fight back for my freedom. I fight for those who are too sick to fight for themselves. A fight to spread awareness. A fight to save our children.