My Fight

Right after Easter 2013 was when I started to notice a few changes in my body. I was having significant pain in my back and neck and I was more fatigued than usual. I thought my fatigue was a result of my anemia coming back and so I thought nothing of it. As the weeks went on my pain worsened  to the point where it was keeping me up at night. During the really rough nights I would cry and cry and, if I got lucky, I would cry myself to sleep, which would relieve the pain for a few hours. During July 2013, while I was home in the Bahamas for summer break, I mentioned the pain to my mom. We saw my doctor at home (lets call him Dr. A), he couldn’t understand what was happening so he ran tests for Rheumatoid arthritis (RA) and Lupus….they both came back normal. He put me on steroids and prescription anti inflammatory just to see if there would be any change in my symptoms that could indicate the early stages of lupus or RA but like suspected, my pain did not subside. My doctor at home decided it was time for me to see a rheumatologist. Due to the lack of proper medical care in the Bahamas, i had to go to Florida to see this rheumatologist (lets call him Dr. B).

My mom and I set up my appointment, booked out flights and a hotel and flew to Florida to see Dr. B. He conducted his exam and looked at my blood work his confusion was fibromyalgia. He suggested a few prescriptions, life style changes and home remedies.

after i returned home i decided to do my own research into fibromyalgia and its symptoms. I spend hours reading information on medical websites, chat groups, blogs etc. but the more i read the more i felt like this was not what i should have been diagnosed with. With that being said, i gave the medicine and life style changes some time before i mentioned to my parents my uncertainty behind my diagnosis.

A year later, that following summer, i expressed to my mom that i was getting worse, the medication was not working and my pain had invaded every part of my body and we were back to square one. Nothing was helping and i was only getting worse.

I asked my parents if i could go to the Cleveland Clinic in FL. My thought process behind this decision was, “The Cleveland Clinic is a research hospital, they will investigate further into my symptoms and help me”. Boy was i wrong about them. I was so hopeful. I was seeing their best rheumatologist and endocrinologist. The endocrinologist i saw was actually nice, he requested an ultrasound of my thyroid and thought some of my symptoms may have been attributed to possible growths on my thyroid. Unfortunately a few weeks later i found out my scans came back normal. The second Dr. saw was said to be their top rhuemetologist. We waiting forever in the exam room to have some guy come in and bring two students with him. He barely introduced himself or his students looked at my paperwork touched a few places on my body, asked me a few questions and then said “Yea I told my office to let you know that i do not treat patients with fibromyalgia, there is nothing i can do for you”. I replied letting him know that i did no have fibromyalgia, that something else was going on. I started to get emotional because i realized at that exact moment i went from being hopeful to hopeless. I started to tear up and the Dr. proceeded to tell me and my mom in front of his medical students that i needed to see a therapist because this could all just be psychosymtomatic. I tearfully told him “ look, i have been depressed twice, i know what that feels like, i know what being suicidal feels like, this is not that and you are wrong”. His response “there is nothing i can do for you, check out on the left when you leave the room” and him and his students left. One of the medical students, a young guy, looked at me with apologetic eyes, i almost wished he had been the dr. i saw because maybe then he wouldn’t have been so cold hearted. I cried off and on for the rest of the day.

Was i going to feel like this for the rest of my life? Am i ever going to get better? Am i ever going to be able to carry a child and be a mom? Will i get worse? These thoughts haunted that days, weeks and months that went on.

Fast forward to end of 2015. I had been dating my now fiancé Tyler for a while. He was very aware of my symptoms and was more aware then anyone else of that way my body was deteriorating. We talked sometimes about how i felt i would never get better and how i realized it was time i just accept my fate. Tyler decided he was not giving up and thanks to him and the research he did he discovered the possibility of lyme. Initially i thought he was crazy, how could i have lyme, i had never been up north where these so called “lyme ridden” ticks lived and i had also never noticed a tick bite or seen a rash. As we both dug deeper we realized that Lyme disease was so much more than that.

It is a disease that the Medical World wants to keep a secret, it is a disease that is present in South Carolina, it is a disease with more controversy than i could ever wrap my head around, it is a disease with symptoms that mimic so many different disorders, it is a disease that if left untreated would continue to eat away at your body and its organs.

Tyler brought my mom up to speed and made me do a check list. I had the dull achey paint, the shooting pain, the numbness, the dizziness, the fatigue, the brain fog, the blurred vision, the nausea, the weight fluctuations, the stomach cramps, the headaches, the insomnia and everything else in between. It was not until i completed the checklist did we realize we may have been on to something….

This is MY Lyme life….