Isn’t it just another day in paradise? I could hardly agree. Paradise is soo lost right now. Milton and I know only too well.
September 2008 archive
I know that its a little early to make a list of the things that we are thankful for, but looking at all the colored leaves all over the place reminds me of Thanksgiving-being close to Plymouth Rock helps a bit to get me in the mood, I suppose. But since I have learned to appreciate each day as it comes, each moment as I live it and each memory that passes my mind by, I realize that I have so much good. Almost enough to keep the bad away. Just almost, but it’s always there to keep me oh so ‘grounded’, painfully so.
I have arrived! Dun dun dun duh! A momentous moment I truly believed would not come. I am speaking of my arrival, figuratively in half a piece, in New Haven, Connecticut, pretty much as far away from nearly the very west-est of my hometown. But I didn’t simply fly from point A to point B, that’s too easy for the clever Lyme bugs. They make plane travel out of the question and besides, when the flight crew takes one look at me, they would have turned me away. The biggest problem with the sky is that the virus thrives on tuff conditions, like extreme heat, cold and altitude. The result of a simple and short plane trip would have made me much sicker and weak and therefore unable to get treatment. So we did it old school. My incredibly wonderful aunt & uncle drove me across the continent. No school like the old school, is there?
Obviously living on an island and my failure at learning Jesus’ ‘ol trick, forced us to take a speedy boat trip to Seattle. We had an appointment with a doctor who I was told was the one. He was closest, and new all about Lyme disease. We rented a small condo near Upper Queen’s District, waiting somewhat NOT patiently for the appointment day. When it arrived and the day was done, I was happily sitting in the front seat of our rental, clutching a bulging paper bag of narcotics. My mom and aunt were also focusing on referral slips to others who could offer help. I wasn’t worried about the future, or the past or the moment because for each five minutes that past, it seemed to me like they had never happened. My short term memory loss to me is definitely my greatest…loss. I usually have a fantastic memory and was and still am frustrated at my minds inability to focus & remember. So time just began to slip by. I forgot every day, so it seemed like no time at all had past. But we stayed some weeks in Seattle, of which I have no recollection. Perhaps that’s a good thing. Perhaps. My body and illness was protecting my mind? I don’t see it that way. Not at all.
I saw two more doctors in the Seattle area. The fiance of my original “Lyme Literate Doctor” in Seattle gave me ‘pushes’ which is an injection of nutrients which I really needed. It wasn’t fun, but I needed it, and I’m learning that most of life these days is similar. One doctor who has been truly exceptional and has gone far above her “job” is Dr. Marra. She is a force to be reckoned with and is clearly a passionate woman with a mission and the drive to get things done. Within minutes of being in her office, she was making calls to doctors in San Francisco, trying to get me an appointment with another. And while we drove to California, my home, again seeking medical treatment, she called regularly to check up on me, providing invaluable advice to us. I met with the doctor briefly and was prescribed treatment, but instead of getting worse, then getting better (like a phoenix), i got worse, and worse, and never got a bit better. The doctor was so busy and seemed to have spread himself too thin. Not to say he wasn’t a very good doctor. Even though I went backwards instead of forwards in California, I was happy to be home and spend some time with friends. But then we picked it up and drove across the USA to arrive in New Haven, Connecticut for my last stop.
The last stop. Wow. Never thought I would find the official “last stop” after the first few turned out to be rest stops versus final stops. But I’m here and that’s what they say matters. I wish I could remember the journey because to me, even though I’m doing nothing, time is slipping away too fast. If I learn nothing else, it is that we must all live for each day, because tomorrow is not promised.
Another long journey only leads to a longer one. That’s life. Right? That’s what they tell you. A long, long journey.
I have Lyme disease. It attacks virtually every organ in your body and makes you unable to walk, think, remember, and causes unbearable agony. If you don’t believe me… oh just go out in the woods and ask a tick to climb aboard and you won’t be the one laughing. Especially if you live in Canada.
Ahh Canada. Great country. Nice government (generally), internationally well-liked, free school and health care-> wait. I just hit on my greatest problem. The free health care system. I appreciate that everyone is treated equally and gets all the basic human rights ie) healthcare unlike our southern neighbors BUT. BUT. BUT. I went, on my last legs and on the end of my nerve to the US of A, hoping someone there would help me. Crazy, right? I mean we have GREAT healthcare at home? WRONG. Actually, dead wrong. If I had stayed in Canada, I would have gone down hill and died. I would have died undiagnosed. The doctors would still be standing there, scratching their heads, never able to read the bright green signs of Lyme.
You see, in my beautiful province of BC, there are under 10 cases of Lyme reported by doc’s every year. I will not be the 11th. And the dozens of people that I have met in the supermarkets, in the street, in my school and coffeehouse won’t become statistics either. Because Lyme does not *exist* in BC. It doesn’t even exist in Canada. I can’t walk, can’t remember words, faces, names and places, see terrifying things in hallucinations, I’m in mind-insane-driving pain, my joints ache unbearably and my lips crack, peel and burn (to make it brief) because of a disease I can’t possibly have ’cause I live in Canada. Still, with 28 out of the common 38 symptoms, seven doctors refused to test me. A test, which throws out false positives and negatives, making the results so inaccurate that only 34% get it right. It’s almost comical, in a sadistic way. Surely 75% of the common symptoms would classify me as having Lyme disease, but that’s not good enough for my numerous Canadian doctors. I was saved by two Canadian people, who had ears and hearts and guts: a Naturopath and retired Lyme doctor. My naturopath tested me for Lyme disease, not at a Canadian lab or by using the standard Canadian test, but at a lab in California called Igenix. My blood was screened using a test that up here in cozy Canada the doctors were ignorant to. And after months of suffering and weeks of anxious waiting for the results, I turned up positive. Previously though, retired Doctor Murakami of Hope, BC, listened over the phone to my growing list of bizarre symptoms and concluded by giving me a clinical diagnosis of Lyme. I’m lucky. I was diagnosed and I’m not lying in bed or taking the wrong meds because my doc said I had chronic fatigue, fibromyalgia, MS, arthritis, and even ALS.
Are you seeing the picture?
Are you seeing what we’re up against?
Cause I am. Cause I’m feeling it in my BONES.
Some scientists believe that if Lyme would be taken seriously, its victim count in the USA would be higher than AIDS. I mean this is serious stuff! And because I was so desperately ill and 7 different doctors including our GP, his walk-in clinic doctors,
3 ER docs, 2 pediatricians, and a pediatric rheumatologist couldn’t figure it out, I left. Walked out on the healthcare system and government I had previously believed to be so great.
To them, I would say BITE ME, but gosh something already did.