My Lyme symptoms started when I was nine, but I wasn’t diagnosed until I was eighteen. I believe it takes having the wrong internal environment for Lyme to even set up shop, a degree of a weak immune system to begin with.
At nine I had some lymph nodes in my neck swell up and stay swollen for months. They itched. I couldn’t keep from scratching those lumps under my skin. We went to the pediatrician, and he assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming, and going. Mom told me that I must have bad sinuses like she does, along with her sister and her mom. "It's normal; you're just starting into the pain of it a little young."
By the time I was eleven I was having migraine headaches sometimes. We also began making homemade soap with all the artificial, industrial strength fragrances. I was the scent mixer because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often. I chugged along, thinking life was normal.
Abdominal pain was a regular thing. I never considered it a problem, just said, “Ow.” Like most kids I was told, “Stop whining.” If your parents don’t think a heartbeat of it, it mustn’t be a problem--right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Aleve was the only thing that used to touch it. Tylenol and Ibuprofen didn’t do a thing, and pre-adolescents can't take aspirin. Those headaches were common. I remember crying because they were so bad. The sounds of electronics invariably set them off. As a kid I hated talking on the cell phone, and had no reason that I knew of! I remember always being cold. I was so cold on some days that I would wear sweaters in the middle of summer.
I remember how my first menstrual cycle went. When I think of it now, I see the Lyme and hormonal extremes. For two or three weeks before it I felt AWFUL. It was summer, and I was lying on the sofa. Then, the day I had my first cycle, I felt good. I cleaned the whole house and organized a bookshelf. Mom was amazed. Then I had to use the bathroom and learned--as some would put it--that I was a woman.
Within an hour the cramping began. I don’t remember how long that lasted, but it was as if the pain inside was a rope trying to pull me to the floor. My cycles were pretty regular for several years. But the pain in my pelvic area, at any time of the month-–it did not correlate with ovulation–-would be like someone stabbed me with a knife; it would tear and be so sudden that I would go to the floor sometimes, as if I had been pulled down. It wasn’t the same as the summer diarrhea pain I got. That was something I also grew accustomed to.
By the time I was twelve years old I was having pain in my joints, especially my right wrist. I was better than the weatherman at predicting the weather. I would go out and play, but I'd have to rush inside because the heat gave me diarrhea with cramping. Down in the south, you don’t talk about the bowel stuff, especially as a kid–-it’s not very attractive. I was always content to study, and wasn’t the most physical of kids. I did everyone else’s chores, but wasn’t good at doing my own!
When I was about thirteen I started going into my room and having a crying spell for fifteen minutes every single day for at least year. It was just to cry--I don’t remember any good reason. I got sick of my crying and dried it up after a year. I said to myself, “If I don’t have a reason to be crying, then it’s wrong for me to be having pity-parties.” Maybe that was depression. I remember having nights that I couldn’t sleep, but thankfully this wasn’t too often. My dreams were always tense, with strange nervewracking twists in the story. All I heard was that this was the nature of dreaming. I often startled awake in chills, and an inch off my bed, when I dreamed I had slipped off the steps. This dream continued until I was nineteen, and I still have it occasionally.
When I was fifteen or sixteen I basically slept through the entire winter. I remember trying to sit down to read something, or listen to some audio program, and next thing I knew I had been asleep for hours. I wore three layers of clothes and was under two heavy afghans and was still cold all winter long. That was the year I didn’t play out in the cold at all.
Thankfully I don’t remember too much awful stuff, but I don’t remember much at all. I just remember that we were listening to the Audiobook of C.S. Lewis’ Screwtape Letters. Needless to say this produced some horrifying dreams. When I was awake I would be warmer after having slept, and I didn’t really want to go back to sleep. But I would inevitably drift off again. I did have spells of needing to run up and down the stairs--yes run--but it was at strange hours like 11 pm, 1 am, 3 am. It happened only a few times when the sun was shining.
At fifteen, I thought it was completely normal to live five days out of seven with a migraine headache--light, smell, and sound sensitive. It would make me throw up about once a week. Every time I stood up I had to catch my balance because I would get lightheaded and my vision and hearing would fizzle most of the way out and then come back.
By this time I was nicknamed “super-ears” by my brothers who wanted to play video games or watch a little TV while my migraines would make me vomit. I’d be screaming for them to turn off the TV, and it was downstairs and across the house, on volume 1. I was told I was being oversensitive and to be nicer to people. I just shut up, but still would fuss sometimes. I didn’t feel good enough to scream too much.
I could drown the world out with classical music, and I could play my flute. Actually, holding the flute relieved my wrist, but the need for breath was a slight challenge until I had a good enough diaphragm to compensate for the lightheadedness. Then I discovered opera, and Andrea Bocelli! I listened to his music constantly-–it was definitely obsessive.
Aleve did me no good for the pain, anywhere. I didn’t really complain about anything but my wrist and my head. Somedays I would lie in bed and feel as if someone had beaten my head against a brick wall, smearing it against the brick, trying to grind to the bone. If I wasn’t just about to vomit, only Andrea Bocelli’s singing could ease my pain. If I was going to vomit I was in for several hours of pure misery, knowing relief would only come after losing my lunch. I did an awful lot of writing on his forum back then. I didn’t know why it touched me so much. I thought my level of pain was something everyone dealt with. If mine was normal, I didn’t know how others survived “real” pain. But that was something I just “knew” and never thought about.
I was so sensitive to hurricanes that if they were 600-800 miles away I invariably lost my voice. The sinus pain was extreme--those days of lying in bed, feeling like I was being tortured by the mafia. (Now I know it was some secretly renowned Nazi scientist who was inadvertently torturing me. See Lab 257. Ha ha.) I couldn’t wait for the hurricane to get here so I could feel the relief. I remember waking up and telling mom “Katrina just went from a 3 to a 5--I promise you!” It felt so horrible. She checked the radar and the news, and everyone was talking about how strange it was that Katrina had gone from 3-5 overnight. I knew it! It was miserable. What’s horrible is that the pain let up some when she hit land. Made me feel kind of guilty, but oh the relief!
I still managed to get my schoolwork done; it was a kind of distraction. I always have been very study-driven. I also delved into studying Italian. I wanted to understand the beautiful language that I had begun singing along with.
Thanks to the sinus issues and using my diaphragm for playing flute, I was sixteen and could sing not just a decent alto, but sing right along in Bocelli’s voice range. I wanted to sing soprano but heard the tinny quality of my voice and couldn’t stand it. My brothers got sick of it too. They told me to sing in Bocelli’s octave, for everyone’s sake. I would spend time in my room a lot. On some days I could zone out of all the noise that was killing me, or overwhelm it with my music. Other days I would watch something on TV with mom.
We got wrist braces at Wal-mart for my right wrist. It would swell at random times, and I'd be in such pain. Both wrists were too weak for me to open a container on my own. I thought that was normal too; after all I was the only girl in the family. No muscle sister to compete with. Despite all this I took drivers' ed and did decently well. OUCH on the wrists! This was also the year I got interested in health. Surprisingly, that is all thanks to my now-LLMD. He came up to our church and gave a lecture on how to stay healthy. I took six pages of notes for a 45-minute lecture! I’m in college now and to date haven’t taken notes that extensive. I began reading health stuff like crazy and I wanted to change our diet, but my family wasn’t for it. It was “too expensive” to change. But the time would come.
At seventeen, I fainted at a funeral...
Part 2 Friday.