Archive of ‘seattle’ category

Intent of Meetings

The last few days have been utterly exhausting. I hadn’t the heart to write all this, I couldn’t muster up the strength. Don’t get the wrong impression and think that these days were bad, far from it. Highly enjoyable, yet totally exhausting and consuming, as most important and fun things are!!

A crew from CTV’s W5 (for the Americans in the crowd, it is sort of like ’20-20′ or ‘Dateline’ I think…) came to our house to discuss my fave topic ever: Lyme Disease. I was obviously shocked and flattered that they actually wanted to talk to me. It was strange having all these…strangers in the house…filming, and talking to me like we know each other!? They were so nice, Jerry, Paula, Richard, Brian, and really good about the ‘no-touch’ rule, and the ‘I-don’t-remember’ issues. We just talked for a while and laughed and did normal stuff. I was feeling incredibly shitty that day, its hard to hide sometimes.

My bones are on…fire. They are hot inside, but the sort of hot that feels so hot you can’t tell whether or not it is fire or ice; do you know that feeling? Its like that. It feels like some little people are drum drumm drumming their fingers along my bones, my pulse magnified in my ears to a dull bass drum boom. I can crick and crack all the joints. Pain. I forget what it was like before the pain. Maybe there wasn’t a time before. I worry that there wasn’t.

I hope when people see the show, they will understand better what its like, and want the changes to be made. I hope this turns up the heat on the politicians, and makes them act, like SUPER quickly! Its a wild sort of dream, which you could compare to flying through the sky or being deep underwater as a fish in another wild sort of dream.

They went with us over to Seattle, on the Clipper (oh how much fun is that boat ride hunh?). It always feels like a long ride there, across the Strait, with the fast bumpbumpbummpp of the waves occasionally. People smile at sick kids when there is a camera in her face: its funny, more staring but more smiles. Such a price, hunh? I was pretty tired – to put it lightly – when we got to Seattle. Food, movies, shower, bed.

The next day we got up really early (YUCK!!) and went to Dr. Marra’s office, just outside of Seattle. The crew was waiting, and so were the doctors. Dr. Harris was also there, from California! We waited a REALLY long time there. In total, we were at the office from 11-5, which is longer than I usually do ANYTHING (ha including sleep). We met a ton of other incredible patients of the doctors, and exchanged stories and shared sympathy. Its good to meet other sick people, although I of course wish that they weren’t sick at all. The best part is knowing people who have gotten better and are getting on with their lives. Jealous.

The high points of the day were talking to people, and eating Thai dinner, and seeing the doctors. They make me feel sure I will get better, and am getting better. They are both so gentle, which makes a marked change from some of the other Canadian doctors I saw. They changed some of my drugs around, and of course my supplements. Switching is hard for a few days , till your body adjusts.

I’m so tired and fidgety today. Can’t sit still. Can’t focus. Sorry is this all gibberish?

I’m glad we’re home. And so incredibly happy that CTV is bringing up the issue of Lyme disease!! Thank you guys so much! You were so wonderful to hang out with! I hope that finally people will listen up and listen well. I hope there is change.

Seattle: Take 2

We were in Seattle for a few days, seeing (another) one of my Lyme doctors, which is always a treat *rolls eyes*. Dr. Marra is so wonderful, she has helped me so much over the past year, above and beyond her ‘call of duty’, and then some. Its nice to know that there is still enough compassion in the world to make it go round.

We took the Victoria Clipper across, which is a pretty trip! They were so helpful too! Wow, totally impressed! I was so tired though, travelling is difficult. I guess its having to see all that stuff, get up and down, go over bumps, the waiting, and dealing with all the stares as I pass people. It makes me kind of hurt, and embarrassed sometimes, but I suppose they are just curious, just as I would be if I saw a healthy looking young girl passing by me in a wheelchair. I smile at them, to let them know in that gesture that, yes, I see them looking, and its okay because I’m used to it, so instead of glaring at you (as I would sometimes LOVE to do), I smile in an act of diplomacy and honesty. I smile to make me feel more normal.

I was freaked out to go to Seattle, because last time I went to Seattle to see a Lyme doctor for a few days, I ended up being more than a year away from home, and sick as hell for all that time. A part of me wondered if it wouldn’t be like that again. *Spoiler Alert* I made it back in one piece, and on the right day.

It went well. We switched up some drugs, we did a little of the ‘so-how-are-you-feeling-now’ stuff (eww) and so on. I’m doing a little better than a year ago, but only a tiny little bit. Let me say that I don’t notice these ‘improvements’. I guess I’ll have to wait a little longer for that!

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