September 2008 archive

Poolside Lessons

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. 

Welcome to my today, tomorrow, now and yesterday.

Wake, eat, sleep, repeat. The rest of the details are a little shaky to say the least. Its rather odd living for the past 5 minutes. For me I’m still in June, practically sitting outside myself. Actually, yesterday (to me), I was in ER with a high fever, not knowing what I was sick with. I would expect to find the fresh IV and needle scars in my arm, but this is almost October not June, the warm summer has been traded for cool breezes, deepening red leaves, and the occasional temptation of warmth and humidity in the air. 
Not going to lie, but today is not exactly my best of days. It feels like a truck with endless tires ran me down with a vengeance. I feel like at least my ribs are cracked, or broken, but they’re fine. My joints are SO swollen when I close my eyes, but on closer inspection they look normal. I know something is eating through me steadily, but have just not breached the surface. I feel almost positive that there will be nothing left in me for scans and tests ‘cept a heart that is still trudging on. Everyone keeps urging it on with love and hope. I follow suit and eat hope for breakfast. And snacks. Frequent snacks. 
I’m not meaning to sound cold or whiny. I’m so fed up. And so let down. I am loosing more faith in the health institution day by day. A little more knowledge, a little less pride and some insane luck and I could be back home, visiting my friends when I wanted a cheer-up. Who knows if I would have been on my way to recovery a full 6 months or so ago had I been diagnosed. Who really knows? I’m not sure of anything. 
I would settle for a mundane existence right now. I want to go to the mall and drink bubble tea and laugh. I want the freedom to do what I will. I would settle for walking. I love these legs and they ain’t working so hard no more. And I’m pissed. And so ready for a stroll through the park one day. 
Martin Luther King wrote in 1963 that “The ultimate measure of a man is not where he stands in moments of comfort but where he stands at times of challenge and controversy.” Where do I stand? I’m not exactly living it up, but standing in the murky waters of Lyme where it is both a challenge to live with and a controversy to be able to be treated to live without it. I live in a tidal pool of confusion, pulled across continents and into different medical offices and constantly swimming, not sinking. Good thing too, cause I’m not as good as I might be on surviving underwater. 
I swim. I swum. I’m swimming. I will be swimming. For a long time.
PS: Thank you to all those who throw me a lifesaver when I go overboard and fish me back out from the deep constantly. You pick me up selflessly and I don’t deserve that kind of love. But know I love you more in return. Keep fishing. When I get better, I will swim with you. 
“What makes the desert beautiful is that somewhere it hides a well.”
~ Antoine de Saint-Exupery  ~

Hope for the Fall

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.

Each day I greet with a sigh of annoyance and frustration like everyone else. I don’t have to get up to an alarm so that means that when I wake, the only person I generally have to blame is myself and somehow hitting a barren dressing table, searching for the snooze button doesn’t help me fall deeper asleep for that stolen 20 minutes. Outside it’s beautiful but to me it doesn’t come through my window pane, it falls just short of where it should, like heavy expectations. Perhaps it appears that this would fit under my list of growing ironic curses, but I have come to believe (after it has been droned into my head thousands of times) that waking up in the morning, though it is a continuation of my suffering, it will lead to a better kind of end. The end of this disease. It will also lead to the stage of my life which I will call the “activist” stage. To make change I gotta get out of this hole first. 
I am thankful for narcotics, and mothers and aunts to comfort you, I’m thankful for weather which always mixes up my day nicely. I am eternally grateful for ladders which continue to be lowered into the deeper and deeper holes that Lyme is burying me in. I know that later, as the pain becomes and dull ache and then a distant memory, I will be thankful for life. For the fact that I can sit by my window and watch the world fly by, that I can feel a wind lift me up and laughter shake my bones again. 
Forgive the poeticism but this is the honest truth. I could never construct a lie about this when the truth is as beautiful as it is. 
Beautiful things. That’s another that makes it worth it. I’m looking out of angry eyes and a little color and life always brightens me up. In stores, I reach out for brightly colored things; coats, shirts, hair scrunchii’s, pencil crayons, photographs…anything that catches my eye become the apple of it. I’m thankful for the ‘God’ or sweet technicolor-light-science which made this ‘color’ exist. I live for it. I breathe it. And makeup, in lurid colors. It makes me feel like I’m with my friend in a drugstore, browsing the isles, looking for new stuff or cool stuff on shopping trips to the downtown Victoria. 
And my goodness, thank goodness for books! Its always nice to loose myself in someone else’s mind and life for awhile and escape mine. And my am I glad to have some fun games around and wonderfully silly people to play them with.
But above all, I cling to one ideal, like so many others.
Hope.
Not just my hope, which I am a little low on at the moment, but the loving, sweet warm glow of the hope of loved ones. It is the rock I cling to as I’m hanging off the cliff. It sounds cheesy but it is you guys, my friends and family who I laugh with (or at-its kind of a sketchy topic) and cry with and dance with and sing with and share most of my ‘finest’ moments with and live with and for. You have no idea how much I love and respect you. You define me. And keep me breathing. I am indebted to you. I never realized how much I value and rely on your love until now. I’m glad and most thankful for you guys. Thank you. What more can I say that hasn’t been said a hundred times. 
I think of you guys all the time. I see you everywhere. In everything. Its strange. You are timeless and have spread your love out so far, it reaches me here. 
I am thankful.
So thankful.
It makes me want to wear fall colors and wax press big leaves and walk outside and feel the breeze in my hair. 
But I have proved that thankfulness isn’t just a onetime shot.
We shouldn’t take care of the earth just on Earth Day, love solely on Valentines day, celebrate life just on a birthday and death on the Day of the Dead, make jokes only on April Fools and eat mini chocolates and be free on Halloween. 
Everyday is a holiday. An adventure, both good and bad. And to me that is worth living for. Worth waking up and drifting off to sleep knowing that I have hope, and more things to be thankful for tomorrow.
Thank you. 
I am so thankful.

Travels To Neighbors

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.

The End & The Beginning of The End of The Beginning and the Beginning of the End etc.

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.

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