Chronic Lyme Disease

So this is my story. It took me a while to write this because sitting down at a computer and writing is not one of the easiest tasks for me to do.

As far back as I can think I always remember being sick. There is not a time in my life when I remember feeling great. For a while I thought every one who plays sports and is active feels like this. But I soon realized that this was not normal as my team mates could do things I could not do and simple tasks such as recalling a memory or the day left me confused and frustrated.

My parents think around the time I was 8 or 9 I was bitten by a tick. Me and my brothers were always outside. Climbing trees, playing in the farmers fields, camping, and just being kids. Around grade 3 I got shingles which left doctors baffled. Which 8 yr old gets shingles? All they could piece together was that I was very stressed out with schoolwork and such. My parents and I had nothing else to go with so we just accepted it and I stayed home from school for months on end. I now know from my Lyme Dr. that this was possibly right after I contracted Lyme disease and my immune system started to weaken and left me prone to viral infections such as shingles. That same year I began to develop headaches. Constant headaches. Playing hockey or soccer was starting to become so difficult. I began to push through the pain, I would tell myself no pain no gain. I started to get severely dizzy so doctors thought I could have exercise induced asthma. We went to the U of A and ran all the appropriate tests and everything came back perfect. On paper I was a healthy young girl. Soon I was not able to finish a volleyball/hockey/soccer game without taking a Tylenol or Advil. People would just tell me your dehydrated and you need to drink more water.

Grade 6 I was bullied quite bad to the point where I changed schools. As if I didn’t feel alone already I started to be the target for girls to pick on. I was strong and athletic, but mentally I couldn’t grasp things my fellow classmates could. I began to feel like I was just not very smart. Grade 7 was a new school, new people and I was excited and nervous all at the same time. My headaches began to worsen to the point that they were causing me nausea and vomiting. Doctors told me to get my eyes checked so we did. I walked away with very weak reading glasses( my eyes were almost perfect), and an order to sit near the front of the class and I should be fine. I wanted to do everything. Play every sport, be involved in every extracurricular activity and I pushed myself to do so. By the end of a full school day in Junior high I felt dizzy, nauseas, tired, my eyes and head were pounding with pressure. All doctors could come up with was migraines ran in our family and due to hormones changing I was just very susceptible. Jr. high was difficult for me. I would study 4 times as hard and 4 times as long as my friends and by the next day none of the information had sunk in. I would forget everything. Me being confused and struggling in every class, math especially, left me to be open to a teacher picking on me brutally. Making fun of me for not knowing things. My mom heard of this and barged right into her classroom and it got very heated. Needless to say that teacher stopped picking on me but never helped me, just ignored me, and I barely passed math class. Onto a new school high school. At the time I thought I had great friends but know one understood the pain I was in. I was extremely dizzy if I walked to far. I was constantly throwing up. My throat was always sore to the point that doctors always thought I had strep throat. I was developing awful pain in my joints. My back, my hips, my knees, elbows, neck, fingers. I was riddled with pain and I could not understand why. I ate healthy, I lived a very active lifestyle. Me and my parents really did not know what was going on. Many doctors told my parents that I suffered from generalized anxiety disorder and if I learned breathing techniques I would be fine. One doctor continued to try to find some sort of an answer. She sent me to physiotherapy, chiropractor, massage, IMS, orthopaedic, acupuncture. But nothing was helping. I was still pushing myself to play all the sports I loved but it was getting harder and harder to finish a period, a set, a game. I soon became an outcast. I had to sit on the sidelines. I had to quit midget AAA hockey that I loved so much. My fellow team mates and so called friends would look at me and stare. I looked perfectly healthy and no one could understand why I was acting the way I was. Getting through a day of high school was a painful challenge. I would wake up in the morning exhausted feeling as I hadn’t slept. I had to try and focus all day. I would fall asleep in class, I would run to the bathroom to vomit due to the head pains, and I would limp. By 3:07 I just wanted to get the hell out of there so I could go home and lay down. Grade 12 I was bullied extremely bad, by a group of girls that I though were my closest friends. Every day I would get glares, there would be rumours spread about me. Prank phone calls to my house, one just happened to be on my 18 birthday. My parents ended up going to the police but nothing ever came out of it. Girls will be girls I guess. I became very depressed and thought many times of taking my own life. My mom took leave and stayed home with me. She witnessed the continuous back spasms, the dizziness, the arthritic pain, the anxiety. I was losing hope quickly and my mom and dad did everything they could to keep me afloat. My dad bought me a dog, one that I could take care of myself. It gave me a reason to get out of bed that year. For years I loved to watch the cooking channel and make our family meals. It was the one thing I was able to do when sports became a memory of the past. My mom did some research and her and my dad saved up the funds to send me to New York to attend the French Culinary Institute once I graduated high school. That was my goal, and I strived for it. If I could just graduate. I don’t remember a time when I was not studying, meeting with teachers, or getting tutored. But no information stuck in my brain. It was a miracle I graduated that year. I had some amazing teachers that never gave up on me, and I continue to call them my friends to this day. So here I was 18 and taking my little dog and moving to New York by myself. I was terrified if my body would even allow me to do this, but I just wanted to get as far away as I could from this town and the memories it possessed. I don’t know how I finished my course in New York, I think it was by the grace of God that I made it to class each morning. I spent most of my evenings after school in the bathtub trying to ease the unbearable joint pain. That winter when I came home my mom remembers me looking very sick and tired. She said that I looked much weaker, physically and emotionally than I did before I left. So back to the drawing board and doctors. Then started the specialists, neurologists, MRI’s, ultrasounds, U of A pain clinic, Canadian Back Institute, TMJ specialists, and of course many, many prescription drugs. The druggs helped numb the pain but I was no longer Taylor, I was a weak zombie version of myself. I didn’t know anymore what to do. I was slowly losing my will to live. The only thing keeping me going was my family and The Lord. I was 20 when God sent me an angel. Cody. He saw me on a daily basis of how difficult it was for me to do everyday tasks. My mental confusion, migraines, neck pain, constantly sick, chemical sensitivities, IBS, night sweats/chills, weight gain, extreme weight loss, chest pain, mood swings, anxiety, depression, personality changes, insomnia, OCD, forgetfulness, memory loss, difficulty thinking, putting words together, blurred vision, extreme sensitivity to the light, eye pain, loss of hearing, constant ringing in ears, sound sensitivity, joint pain(swelling/stiffness), muscle pain, spasms, loss of muscle tone, extreme muscle weakness, poor coordination, restless leg syndrome that would keep me from sleeping for weeks, constant burning/stabbing/electrical shocks throughout my body that would cause me to collapse to the floor unable to move for minutes to hours. God sent me an angel. Cody witnessed everything and yet it didn’t phase him. He loved me and for some odd reason I cannot explain he asked me to marry him. When he asked my parents if he could have my hand, they were brutally honest. They told him Cody you do not have to do this. This is going to be a very hard marriage given Taylor’s disabilities, and he shook his head and told them, “I will take care of her”. A month before our wedding I went to a neurologist who claimed because I was a hockey player I must have piriformis syndrome and that all I needed were a few cortisone and steroid injections and I should be able to live a normal life. This left me incapacitated. My wedding came and to this day do not remember it at all. Pictures show my dad walking me down the isle I clearly am having trouble walking. I was on so many pain meds to try to get me through the day, the day that should be the happiest day of your life. I felt as if I was dying. I had one dance my father and one with my new husband and after that we left. Cody carried me out and put me to bed while the party (our party), went on without us. Looking back at all those pictures of our wedding day I can see the sheer terror in my eyes, just wondering is this what my life is going to be? A mentally and physically crippled version of what I once used to be? The next year consisted of many trips to the emergency room. The pains in my chest and my struggling to breath became more and more reoccurring. And yet every time I left the ER I felt like a laughing joke. They would run every test and tell me you are the epitome of health. You look fine. Its all in your head. I was so very depressed. My life was spinning around me and I couldn’t hold on for dear life. Cody’s dream was to join the military and as a wife I pushed him to follow that dream. I knew life would be very hard with him being gone for long periods at a time, but my whole life had been difficult so really what was the difference. While Cody was in basic training I moved in with my parents. Some of the best memories I have are with my parents. They unlike the rest of the world always believed I was suffering. And if It was just renting a silly movie, ordering my favourite takeout, or just sitting by a fire while my dad blared Van Halen doing the air guitar, they always did everything in their power to make me smile. I love them and without my parents I would not be here today. Having parents believe you and know your not making it all up is what kept me from ending my life on many occasions. Fast forward a couple months and god sent me yet another little angel. A baby. We were pregnant after being told by numerous Doctors that we most likely would not be able to conceive with my health being what it is ( Fibromyalgia/chronic fatigue syndrome/ myo facial pain syndrome/ arthritis/ osteoporosis and pelvic problems. The pregnancy was so very difficult. I lost 20 pounds in the first 2 months. I could not keep anything down. My pain left me in bed almost all day. I was fainting for reasons my Doctor could not explain. And my mood and personality changes were a nightmare. But Cody stuck by me and supported me on the days when I didn’t want him to. He left when I was 8 months pregnant to go on military course. Seeing him leave that day was so emotional. My rock, my best friend, was leaving me and I was going to have a baby and care for this baby by myself until he returned. They told him he would be gone for about 7 months. Welcoming a beautiful, healthy girl who we named Lily Ann-Marie, was the day that I became a mother. And I was not ever going to give up fighting for my health. I had this little being who looked up into my eyes and I was her momma. This gave me a new lease on life. A reason to live and fight to get better. I became a different person. Yes I was still in pain every single day, but I had someone who needed me and I was going to do everything in my willpower to make sure she had the best life full of love and happiness. When Lily was 9 months old the military posted us to Comox, B.C. Here I met wonderful friends, real friends that I’ve never had before. Women who love me and support me. My friends are here to pick up Lily when I cant function. We were so blessed to have come here. Although finding a new Doctor here was a struggle. Each and every one I went to told me we can treat your symptoms but you are going to have to accept that this is your life. Nothing is wrong with you. Your mind is a powerful thing and you CAN talk yourself out of your pain. I tried and tried to do as they said but the pain was not going away and as much as my blood tests stated I was healthy, I new something was very wrong. I was not about to lay down and accept that this is my life. I had a daughter who I knew needed a healthy mom, not just a skeleton of a sick mother. 5 months ago my symptoms were starting to worsen. I was unable to move my legs. I could not walk. I could not lift my arms. Cody would come home from work to find me laying collapsed on the ground. I was losing my vision and my hearing almost every week, and the crippling head pains were leaving me so very weak. In any spare moment Cody and I had, we began to research. We were starting from scratch. I couldn’t accept all these diagnosis’s doctors had given me in the past. Because they were all different. So each and every night we would be on the computer looking, just trying to find an answer. Lily and I went home back to Spruce Grove to visit our family one week, when I get a phone call from Cody. He says, “Tay have you ever been bitten by a tick? Go ask your mom if you’ve ever been bitten by a tick” so I did. My mom starts to think and says yes. She remembers me being quite young back from a camping trip and complaining about a spot on my head. My dad and her found a tick so deep they had to dig It out. I asked her why I never knew this and she tells me our Doctor thought nothing of it, you remove the tick and your fine, plus there is no Lyme disease in Alberta. Cody and I weren’t sure if this was just another rabbit hole we were about to embark on but it was worth a try. The second I got home to Comox I went in to see my doctor. She said if it will give me peace of mind and rule Lyme out she would run the test. During this waiting period Cody had been in contact with Jim Wilson, the president of Canadian Lyme. He said do not be discouraged if this test comes back negative. The Canadian tests are almost always false negatives. This is for many reasons one being the Canadian tests only test the tick derived strain of bacteria, as opposed to testing human derived bacteria. So we were informed that getting tests done at a place in California is much more precise and accurate. We were waiting to see what my Canadian test (ELISIA) would say. It came back negative and my Doctor urged me to leave it alone and not spend the money on more testing as it would be a waste. Even I for a moment thought this is money we do not have. My husband is a private, I cannot work. This is money that should be going to diapers, groceries, our daughter. Cody said no. We are not giving up. So we paid for the tests and then we just waited for an answer. Finally after a couple weeks they were back but I needed someone to tell me what they said because I had no clue how to read these test results. I went to my Doctor and she said sorry I don’t know what this says and sent me on my way. Cody phoned Jim Wilson again and thought maybe he could help us decipher these test results. Cody read them to him over the phone and by the end of it Jim Wilson told Cody, you need to get your wife seeking immediate, aggressive, treatment. She is very sick. We were in a state of shock. Never once had I gotten an exact diagnosis. I thoroughly expected to get the tests back and hear they were negative and then be on my way, because for the last 14 yrs that how it has always gone. Jim Wilson got us in touch with a ND in Victoria who specializes in lyme disease. We drove up one day and were very unsure what to expect. I think we were still in disbelief as if someone made a mistake. As this new Lyme Doctor went through my tests she said wow. You have lyme and co infections as well. It looks like you have been battling lyme for a long time. I just burst out into tears. I finally found an answer. But it was not a quick fix. If i do not treat my Lyme disease it will continue to attack my body, my organs, my tissue, my bones, my mind, my entire body.  At 25 I've started walking with a cane. My family and I have seen firsthand the battle that is going on in my body, and sadly my body is losing.  I need treatment. Treating chronic lyme disease is not easy. It takes time. In my case it could be many years. And treatment is not covered. Our medical system likes to believe that lyme disease does not always exist. So I need to pay out of my own pocket to get the treatment I need. Treatment is not cheap. And we don’t make near enough to cover the costs. As of right now my parents give us what they can but sadly its not enough. I ask you for your help. Any amount you can donate would help me to get better. I wont stop fighting. I will continue to fight so I can be a mother to my little girl. Thank you so much for your generosity.

Donations

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  • Jenna Beatty 
    • $200 
    • 71 mos
  • Anonymous 
    • $50 
    • 79 mos
  • Anonymous 
    • $100 
    • 79 mos
  • Diana Hegion 
    • $100 
    • 80 mos
  • Gloria Blanchard 
    • $100 
    • 80 mos
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Organizer

Tay George 
Organizer
Lazo, BC
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