MY 9-MONTH JOURNEY TO DIAGNOSIS
While on holiday in Whistler, I wake up in middle of night sick. Vomiting, diarrhea and general malaise. In the morning, I have a weird rash on my lower face, across my chin.
I feel somewhat better as the day progresses, but in the week that follows, I continue to have this vague feeling of uneasiness or malaise and begin to feel extremely tired and worn out.
I figure that maybe I am just tired out due to our long five-week road trip we’ve just come back from.
Hit Robert’s Creek on the sunshine coast for vacation, one week after being in Whistler. I continue to be very tired out and am also very moody. Try to go for a run but my get up and go got up and left. During our week in Robert’s Creek, I begin to have really bad, unrelenting headaches and an incredibly stiff and sore neck and collarbone area. Once again, I chalk it up to all the traveling that we have been doing.
By June, 2007, my health had worsened to such a degree that I was confined to bed for days on end.
Over the years I have developed a total phobia of hospitals, due to the poor attitude shown by the NHS doctors and their complete lack of treatment. I had seen many doctors but there was no diagnosis, except for possible epilepsy. Most of the symptoms had landed on me at the same time. For about fifteen days I felt as though I was dying! All the doctors would say was, “We don't know, have you seen a shrink?”
I have now offered to see one, if only to prove that I'm not ill because I'm crazy, but that I'm crazy because I'm ill. Lyme Disease destroys your immune system, and because it is an organic illness it causes mental problems, rages, and mood swings, etc. due to the physical underlying cause. I feel as though I'm on a permanent bad trip! Pure evil.
After that fifteen-day spell in June, 2007 I seemed to regain what I had feared would not happen--a kind of remission. I had changed gyms by this time because I felt there was not enough cardio exercise at my old gym. I became addicted to spinning classes, doing two classes five days a week, along with body pump, bar with weights, and so on. Feeling fitter than I had ever felt-–or so I thought-–I carried on this regime for four weeks. During my last week in the gym, I felt extremely ill. My muscle and heart pains were so bad that my face went as white as if someone had painted it.
I was ill, but I didn't know how ill. By late September, 2007 I had deteriorated again. I could not move or talk properly and everywhere in my body there was pain. Then on one occasion I suffered a massive seizure. My heart stopped, and my friend, a staff nurse--knowing the seriousness of the situation--called 999.
Where do I start? So much has happened and so much happens daily.
In 2003 my now ex-husband and I went to the Canadian Rocky Mountains on our honeymoon. At the time I was 42 and extremely physically fit, a passionate member of the gym for many years.
While there I was rushed to hospital with breathing problems. This became the first symptom of over 100 that I eventually developed through this evil and ignored disease called Lyme.
Back home, I returned to the gym. While there I became so dizzy I felt as though I was in a washing machine. It was nothing like ordinary dizziness. That same day my friend noticed an odd-looking rash on my back, but I simply disregarded it. However, as the days went by I began to feel very unwell with flu-like symptoms. My whole body hurt and my head felt as though it was going to explode. A few days later I started suffering from vertigo--the room was spinning so fast I held on to my bed for dear life. I reluctantly went to the Doctor, where I was told, “You have vertigo. Take these tablets and it will go away.” It did go away for a while, but since then it has often returned.
I have most likely had Lyme for thirty-five years. I have a great immune system so was healthy most of the time though I had random symptoms for as long as I can remember. I was disabled by the illness in 1982, 1986, and 1991.
Through my healthy years I had weird issues, like in the fall my shoulders would ache. I thought I was just in bad shape and the heavy sweaters caused pain. I had terrible fatigue and wondered why everyone else wasn't as tired. They were all problems that could be considered somewhat normal.
Then in 1982 when I was in college, I was so tired all the time that I got up only for class. My roommate was very worried and took me to the emergency room, where the doctor told me not to drink so much alcohol. This lasted several months, then resolved with a lot of rest, exercise and sunshine. Ironically, I had terrible insomnia despite the debilitating fatigue.
As I sit with pen in hand, weighing upon how to give an account of my battle with Lyme, I have no recollection of a tick or mosquito bite resulting in a bulls-eye rash or flu-like symptoms. I question how I got to this place in my life. I remember a life I once knew--what it felt like to run three miles a day, freedom to socialize with friends at a favorite neighborhood restaurant, eating without thought of the biological aftermath, and living without annoying and debilitating symptoms every moment of the day. I dream of a day where I can be free of Lyme, and will find normality as I join others in living.
My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.
Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.
There has to be an answer! There just has to be. Please God.
At home again, I hit the internet trying to find out what was causing all this grief. I found an article on fibroids of the uterus. Everything matched! I took that into my doctor #6 who now regarded me as a lazy, drug-chugging lunatic, but he felt it was a possibility. Upon my insistence, he allowed me to get more testing and to see a gynecologist again. One thing led to another, and in January of 2000 I had an abdominal hysterectomy. There were multiple fibroids, a cyst on my right ovary, and I had adenomyosis, where the lining attaches itself directly to the wall of the uterus. Labour is way more fun and productive. Right off the bat there was an instant improvement, and I was sure I had finally beat it. I could walk, stand, and sit longer than before, and the pain had been cut in half.
I was back at work doing small errands, not picking up anything over ten pounds, going home when I got tired, and not overdoing it. Even though I was being very careful, I never completely recovered. In fact, once again I started to get worse. The pain was less, but the numbness, tingling, burning and aching were returning slowly. Everything else stayed the same as before surgery.
Then exactly two weeks to the day I had a terrific accident. A car had stopped immediately in front of me while I was watching for what I thought was a pedestrian about to cross the road ahead of me. The roads were wet and when I looked straight ahead of me it was too late to do anything but hit the brakes. I had a meridian to my left and a car coming up on my right, leaving me no place to go except into the back of the car with the pickup I was driving. The seatbelt sat right across my incision, but I had braced my legs against the floorboard. As a result I escaped damage.
I have always been an enthusiastic worker; sweat and blisters never scared me. Almost five years ago I was working two jobs. One was five hours a day and the other depended on the work load, so some days were brutally long, but I enjoyed it. My husband and I split up and it was ugly. Four police officers and a tow truck got involved because he had sabotaged my car in the process of agreeing to disagree...that's life.
I moved on and I had more time to devote to work as a result. I was building a nice little bank account, had GIC's and was in want of nothing. My life was mine again to control, that is, until I started a nagging backache along with a headache and flu-like symptoms that fluctuated on and off. I figured it must be a flu; no biggy, take a few remedy pills and push on. Only, I got worse. In the meantime, the stalking and harassment that I was enduring from my now estranged husband, but did not respond to, were starting to wear on me.
I was always worried about what would happen next, so I attributed my symptoms to stress even though I had never physically reacted to stress before. Mind over matter. He didn't matter so I didn't mind. I was using all sorts of stress-reducing techniques, but still I was getting worse. So was the harassment. Finally, I broke into tears on the morning of December 15th, 1998, from the pain that had started growing six weeks ago (and I'm a tough cookie). I took myself to emergency. The doctor there (let's call him #1) tried to get me to say ANYTHING that would make it a W.C.B. case. "Was there a pop or snapping sound?" Sorry, I didn't really believe that to be a fact. What ever happened to honesty anyway?
Was my immune system wrecked?
As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.
Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.
I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.
I grew up in a beautiful small town in western Kentucky. I spent much of my childhood playing outdoors at my grandmother’s little farm “in the country” and, as a teenager, with a growing love for nature, I frequented the Land Between the Lakes for long hikes, picnics and camping trips. Ticks were just part of being outside. We’d do tick-checks when we got home and flush the little buggers down the toilet. They were common and no one seemed to think anything of them. Nor did anyone seem to know the potential dangers of the illnesses they carry. As creepy as ticks may be, they didn’t keep me from doing the things I loved or visiting places of beauty in nature.
As a child and teenager, I was healthy, strong and athletic. I swam every day in the summer, played varsity tennis from the seventh or eighth grade through my junior year of high school, often accompanied my father on golf outings and helped my mother in the garden. I never had a broken bone, any sort of surgery, or any memorable illness until my senior year. During the late summer of 1995, I accompanied a friend on an off-trail exploration through a forest in Cadiz, Kentucky.
At some point during our hike, I discovered a multitude of ticks crawling all over my legs, as did my friend. They were too many to count and had somehow managed to find their way past pant legs down to my ankles, and socks pulled up to my knees. Both of us were covered from the hips down with these tiny monsters. It was the first time I experienced ticks in mass numbers, so many of them covering such a large area of my body. While a random tick here or there was common, this was a new experience with a distinct sense of urgency.
