January 2010 archive


You know, life is very exciting when you do nothing. When there is nothing, I find, that I suddenly notice so much more about the so-called ‘nothing’ than before. A ceiling has so many little dots, blimp and swirls. The way a chair always leans a little to one side, like its tired of being squished. The whoosh of an air vent, and the way dust clings to it in twisting strands. The sound of a room breathing; the cracks and creaks of it, like the sterile stomach of a living beast. A tense smell. The tang of MicroScan. Dust in the corners of a room, hiding from the broad sweeps of a plastic broom. Such things are nothing when you have something to do, but I find are actually quite fascinating when you are just waiting.

The stupid MePore (sp?) – a kind of clear dressing – doesn’t stick to my skin. In fact, I believe that it repels my skin with astonishing force. Why, only a day after it was put on, it was peeling up away from my skin, inching itself to the outer edges of the bandage and freedom. Of course this is all well and good for it, but rather unfortunate for the 1/2 needle in my port. It loves the sickening sharpness of CholoraPrep and nitrile gloves. Even taping all of the sides down more securely didn’t keep the dressing on, so a few days later we were back in ER, getting it changed again! How annoying!!! Anyway, tonight it wasn’t too bad, and we were out of there in like, 2 hours, which isn’t bad. Hell, you can wait that long in a doctors office, reading bad, out-of-date magazines no one cares about.

I am really really zonked today. Everything is infinitely worse when you are tired. I fainted and fell out of my chair on the way to the bathroom, and fell in a way that my chest hit the ground, my bodyweight pushing the needle and port deeper into me. A little uncomfortable, to say the least. Haahaa. It’s kinda throbbing, deep down inside, in a way I don’t like. It isn’t helped by the cold IV ball I am currently infusing with.

Oh well. At least in a few days it will be out for a little longer. A respite! At last, a shower!

“We can’t solve problems by using the same kind of thinking we used when we created them.”

~ Albert Einstein 

Education, Liberation

Today was a very interesting day. I realized just how far I am willing to go in order to make the changes needed.

The IMP (Island Medical Program) has a section involving hands-on experience with real patients. You don’t have to be sick to help, they just need a really body to answer questions and help them to understand how to do certain things, like checking reflexes and balance and such.

There were three very nice students, and a teacher in our session. We first talked with them about my medical history, drugs I’m taking etc, but without revealing my diagnosis. It was kinda fun. If 3 second year medical students could figure out what was wrong with me, the CDC and IDSA better be doing some serious soul searching.

I was surprised when the teacher asked me if I’d ever noticed a tick bite. No, I was floored that she even asked that. Wow, where were you a year ago? But the topics moved on shortly after.

Anyways, then they got to do some tests that involved touching :(. Not quite as fun lol. They were the usual tests, with a focus on coordination and gait. Muscle strength (ex: I’m going to pull really hard on your arm and you are going to ‘resist’ me- a disadvantage, predetermined outcome of an arm wrestle. Or: Lift your wrists while I press down on them…You get the drift), and the muscle tone test (not sure if its called that), when they shake your arm in a zillion direction, obviously feeling something more informative than I am.

Okay. So after all that, the people were little very interested in my diagnosis, and when they discovered that Lyme Disease was the cause, I could tell they were very shocked, because, of course, the information that Lyme Disease causes vague arthritis was basically what they had been told so far. They were new med students, so the information would be ‘fresh’. I was shocked and pleased by their reaction, their indignation. I felt like I was really getting somewhere in the education. Perhaps it is too late for the doctors in practice, but the med students have yet to be moulded into their full length white coats yet.

I am doing this, twice a week, a few weeks a month. That is quite a few med student. I urge any other Lyme victims, who are willing or able, to investigate programs that their local universities have for training med students. We could be the difference.


AH! It seems like we’re there way to often, but so is the way.
I feel like a waste of time and resources. They look at us funny when we say that we are at ER to get a Huber needle changed. They are like, well dummies, why don’t you just ask your doctor…do it as an outpatient thing?? Ah. Good point. Interesting question. Well of COURSE we would. There is, however, a slight snag.

What doctor? If you can believe it, no doctor wants to take me on, to help me, because doing so would seriously jeopardize their medical licence. I know its insane, but this is what we’re facing.

This week we were lucky; only 2 hours in ER and no parking tickets. Why that’s barely a few chapters of an audiobook!

It isn’t exactly made for comfort, the ER. It is very exhausting; the bright lights, loud noises, awkward positions etc.

I cannot stress enough how long this procedure takes; minutes. And few of them. Pull the needle out, stick it back it. Tada. It is so ridiculous.

Today, I even made it to afternoon choir practice, which was pretty awesome! It was amazing to see everyone, and sing. We’re singing some pretty sweet songs…

Things that Supervened

A new year! Golly!

I wish I could tell you I had an epiphany, a moment of clear brightness, where all my problems were swept away in a neat, tight, fit-for-Hollywood ending, but alas, that is why I mentioned them in the context of being a movie ending. That sort of thing really only happens in movies.

No, to be honest, life snails forward as always. And I don’t begrudge that. If wellness came in spurts, in quick little pinches, all your hard work would feel like it actually added up to something quantifiable in short terms. I like being able to look back over the rocky, mountains of the past and be able to say ‘see? just there? it happened, it changed. now, why didn’t I see that…?’ if that makes any sense at all. I don’t know. I’m having problems making sense a lot.

We went to the ER the other day to get my port needle changed. Now for those of you who aren’t too clear on what a port is, or why we would have to go to the ER to get it changed, I am with you! The procedure take a grand total of about 5 minutes (including getting undress and dressed and small talk). We waited about 4 hours in the chemically-clean smelling ER for a doctor to OK the procedure, which is just done by an IV nurse. It is all very confusing.

I am beginning to feel the beginning of something a lot more like rational anger growing inside of me. Can you believe how ridiculous this is? How has my healthcare plan been terminated by the government? Why have Lyme patients been blacklisted and forced out the country like a ‘communist’. Why are we turned away like Lepers to desolate islands?

With all the knowledge, it seems appallingly bold as brass of them (ie; the head jefe’s- no body knows exactly who they are though…its a nest of nastiness to be sure.) to continentally stick by their stubborn ‘the-earth-is-flat’ speeches, even after Aristotle, Galileo, Magellan brought the truth to light.

It is shameful.

I hope that thought of all the sickness they have profiteered from keep them up at night.

“There is no crueler tyranny than that which is perpetuated under the shield of law and in the name of justice.”

~Charles de Montesquieu 

A Year.

31 556 926 Seconds. 525 986 Minutes. 8 766 Hours. 52 Weeks. 12 Months. 1 Year.

What? Is it that time again already? Have we really already travelled around the sun? Has it really been so long?

It sounds like a hell of a long time on paper. All those second…how can I fill them? All those week…what will happen? In January, my birthday feels forever away!

Despite what they say, I know time is much quicker than the clock would have you believe. It is prejudice.Math classes drag by, waiting for doctors seems like an age, but happiness flies by and before you know it, it has passes smoothly into a fond memory.

“When you are courting a nice girl an hour seems like a second. When you sit on a red-hot cinder second feels like an hour. That’s relativity.” ~Albert Einstein 

How can I reflect on a year? A blank slate, a bowl used to being filled with memories that is so shockingly empty. What can I but what other people have said? That I am progressing, but that I am, if you compare it in larger chunks. That sounds wonderful on paper, but my bones would have to strongly disagree.

It is an hour before the big 2010. When I was in grade 3, I first calculated when I would graduate, and the magic number 2010 and the phrase “Class of ’10” has always put a smile on my face and filled me with the possibility of possibilities. It has become more to me now, it has become a mantra, and I try to focus on the knowledge that I will graduate this June. Hope.

My reflections on the year? Undoubtably good, undoubtably bad in places. I have grown up and grown wiser (hopefully). I have taken to heart the advise about learning lessons the hard way.

I await the New Year with great anticipation…an hour! and Hour!

I wish you all a very Happy New Year, and hopefully a happier and healthier year of next.

Good luck, and Good night.

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