September 2009 archive

New House!

We are in our NEW house today…its quite exciting. We stayed here last night, but most everything is still in boxes, or hasn’t arrived yet. We live in Saanich now, across from a Community Green Space, which is nice.

I’m pretty tired now, though. It feels like there is a fire in my bones, and that someone is tap-tap-taping from the inside of them. Its not been a very good week for me. I feel sick. But hopefully things are on the up-and-up.

Nancy, my auntie is here too! I’m so happy she’s here! Love you Nancy!

Lyme Rally Speech

This is the speech that I gave at the Lyme Rally at the other day! Of course, cause I couldn’t memorize it *duh* I had to write it out ahead of time and read the speech, which I always hate doing. It feels like…cheating or something. But I think I still managed to speak from the heart. Enjoy!

(September 17, 2009)

Hello. My name is Nicole Bottles, and I too have Lyme Disease. More than a year ago I was just a typical teenager. In the space of a few short months I was no longer able to walk, remember things, go to school, or live in a way that could be conceived as tolerable, or acceptable. Imagine my dismay, that after seeing eight specialists and being tested for what felt like everything, doctors still had no idea what was wrong with me. Even though my mom brought up Lyme disease often, it was quickly discounted. I was ‘too complicated’ to have Lyme disease.

If getting a diagnosis in Canada is hard, it is impossible to get treated. I spent the past year in the United States, getting the drugs and care that I should have by right, been able to obtain here.

I wish my case was ‘one-of-a-kind’ and rare. But there are far too many people sick with Lyme Disease now for health agencies and government believe otherwise.

I am angry, and you should be too. Lyme disease is no longer just an East Coast problem. It isn’t just in the United States. Ticks don’t wait in long lines with their passports to cross the border. Lyme infected ticks exist in BC and across Canada, and to suggest otherwise is just avoiding a widely known and accepted truth. Lyme infected ticks are no longer just a thing in off-road parks, deep in the forest. They are in your gardens, on your pets, and your city sidewalks. Even on grounds of the Legislature you could find them! So politicians, it is time that you begin to wonder why nothing is being done, and it is time to act. We need your help. In our own country, with our universal health care, why are we being left behind? Forgive me for sounding like a child, but why aren’t you, the medical establishment, doing more? Don’t you care? If I was your child, or niece or sister, would you let me down the way you have let us all down? There are thousands of Canadians suffering with Lyme Disease. The ridiculous, ‘old school’ protocol now in place for Lyme disease treatment is a joke. It doesn’t help those who need it most; the people who were not diagnosed. The ignorant, blind-eyed approach that most doctors have is clearly not working.

It shouldn’t be this hard to get well. I’m too sick to be fighting, not only the disease, but the bureaucracy to get back to my old life.
My request is simple, but the task is much harder. Simply, doctors need to be educated. Patients need to be diagnosed and we need to be treated.
Are Canadians ready to ask for what is necessary?
Do you see what we’re up against?
Cause I do. I’m feeling it in my bones.
To those who still don’t believe that Lyme disease is an epidemic that causes multi-organ damage, I would say ‘bite me’, but, gosh, believe it or not, something already did.
We are a group of ill-defined patients, literally, our lives defined by an illness that is as yet to be acknowledged in Canada. We need bridges to health not roadblocks.

As we continue to demand support, those suffering with Lyme disease please remember this quote by Margaret Mead:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

Kick it Old School

Yesterday was the best day. I went back to school for the first time in over a year and half. I’m very proud of myself, even though I am only taking Choir (standard and jazz!) and Spanish 12, and SIDES (distance education) English 11. Its still enough. I’m tired, but mostly from hugging a bunch of people and from singing!

It was perfect, the hot, stuff, over-crowded choir room, just like I remembered. There were so many people in choir; suddenly, after struggling to get members for all these years, choir was suddenly cool again. It was great to see so many people there. There were so many little kids there- well at least little to me! They were our buddies at some point. They are my friends ‘baby’ brothers and sisters. Have we grown up that much too? I don’t really remember what we sang, but I’m sure it was wonderful! We probably started with out ‘MMMings‘ and our ‘Moo-ings‘ a ‘Zaaings‘, as we do for our usual warm up. We got the whole barnyard symphony in our little choir room.

I saw so many people who I hadn’t seen in way over a year. They still looked the same, a little older, a little taller, a little louder, but still the people I grew up with and grew to love. I’m so happy to see them! You guys rock!

I got to see alot of my teachers as well, which was wonderful! I’m used to seeing quite alot of them, and not seeing them feels off. They really are most excellent teachers and I hope to get back to alot of other courses soon. Who can say when…

Lyme Rally!

I am VERY tired. I haven’t been quite this tired in a seriously long time. I got up at the ungodly hour of 8 ish…I shouldn’t have bothering going alseep for such a short amount of time. I am usually pretty good in the morning, I wake up quickly and can get going, but I felt a little sluggish. Today was the Lyme Disease Rally at the Legislative Building, downtown, Victoria. There was ALOT of lime green color around, and alot of people! So many sick people in one place…its horrible so many people are sick. I got to meet alot of people that I had aparently heard of before, and tons of new people. Several MLA’s (John Horgan, Lana Popham, Doug Routley: thank you so much for supporting us!) were there, which is wonderful to see! Finally, political action! Its tiring meeting new people, for me, and also makes me very anxious for some reason, when before I usually had no problem with it.

I made a speech, aparently! It went well, so they say, hopefully I got my point across. Hopefully finally someone will listen. A far off hope? The ex-MLA David Cubberly EMCEE’d the whole thing and was very well spoken and passionate about helping people. I’m glad he’s on our side, and not theirs!

I can’t really think too clearly, I’m too tired and sick feeling today. I gave an interview though, with two people, which was sort of exciting I suppose. I’m just glad that it might mean a few more people hear about Lyme disease, and if I can convince them that we need changes to be made, and they can learn a little…is all I could want. Its worth it to do anything to make sure other people don’t have to suffer like this.

After the protest, I went to my school (yay!) and discussed with my principle about me getting back to school and the classes I want to take. I think I can start next week! I’m very excited! Cheers to the future!

Painting Posters

Today, I went with my mom to someone in the Lyme group’s house and we painted signs for the rally tomorrow! There were alot of other people there helping, many of whom were sick. Its frusterating, seeing how many people are sick, how many people cant get care. Everone has their own ‘Lyme Horror Story’. I painted alot of signs and now I am very tired myself. I feel extra sick this week.

They say I am going to speak, which I am a little nervous about. I can’t really practice a speech even because I will just constantly forget it, but no worries. Spare of the moment adds some zest don’t you think!?

The other day I met two of my friends for bubble tea downtown. Now for those of you yet to experience the wonders of bubble tea, I will here try to describe it: it is tea (obvs) with fruit juice or flavor added, with little balls of tapioca floating in it, which are blackish/brownish and kind of look like fish eggs, and have the consistancy of gummy bears, and topped with icecubes. Despite this less-than-apetizing description, it is DELICIOUS and the combination works. Its one of those things that you either love or hate! My favorite flavor is summer soother; green tea, lemon, honey! I saw so many people that I knew that day, and two of them joined our table later. It was so much fun. Bubble tea makes a day brighter!

Try on Some New Genes

Today was very different and very un-Lyme related! Oh boy!

We went to VGH to the Genetics department. I have known i have neurofibromatosis type 1 (NF for short), which is a genetic disorder and in my case a mutation since i was 2 or so. It doesn’t really bother me, but possibly might be complicating the Lyme treatment.
They just asked a lot of questions and then poked me a little bit. About two-and-a-half-hour appointment, which is quite long for a doctor. The doctor, a lady was so nice, and very thorough. All and all not too bad of a day!

I still feel very sick. Somehow, if I had thought about it a year ago, I would have expected me to be much further along than I am. I would have expected to be practically all better, at the very least in less pain or walking or remembering things like old times. I couldn’t have guessed how this year would have turned out.
I guess planning things is a bit of a superficial activity, because no matter how hard we try, we cannot prepare for the unexpected; we cannot outsmart change. I suppose I figured I could.

Of Electrodes, Energy, and Exhibits

Today was not one of those days that I would put in the folder of ‘top days’, but it doesn’t hit the ‘worst-est days ever’ folder either. I suppose it sits somewhere inbetween ‘tolerable’ and ‘less tolerable’ in the file marker ‘procedures of annoyance’.

You know it is not going to be a good day when you are woken up extraordinarily early and then arrive at a hospital, still half asleep, and wonder why you’re there. An EEG isn’t exactly the most painful, or annoying or most anything sort of test. An EEG which stands for electroencephalogram is a test that records the electrical activity in the brain. Brain cells create tiny electrical impulses for communicating with each other. The EEG picks up these impulses through tiny wires (electrodes) placed on your scalp. The impulses are amplified and digitally recorded by a computer. The recordings look like wavy lines (sometimes called brain waves). An EEG may be done when you are awake, asleep, or both.

An EEG is usually done to see if a person is having seizures, and if so, what type of seizures they are. The EEG can also look for changes in brain activity caused by head injury, tumor, infection, or other problems that affect the brain.

Basically,they request that you arrive sleep deprived for the study (to ensure maximum grumpiness :P) before asking you a bunch of questions and then (oh we are getting to the good part) attach a bunch of little metal…well, spoon, to your head with a gel like substance. I say spoons somewhat doubtfully, because they only vaguely look like spoons; sort of discs attached to little wires…and I haven’t seen them to remember them since my last EEG, age 7. After all of that fun and games, they THEN ask you, kindly, to please fall alseep, and try to ignore the camera about 2 feet away, and the technician, busily tapping on keys and watching you, as you try and fall alseep. Oh and did i forget to mention the lights are left on. The concept of an ‘insomniac’ is a little too Greek (or Latin?) for some to understand, because the term means, and I quote from the great Merriam Webster Online Medical Dictionary:

Exhibit A:

Main Entry: in·som·nia
Function: noun
: prolonged and usually abnormal inability to obtain adequate sleep — called also agrypnia

Lets pause a second here to re-examine Exhibit A, as seen above. Notice the use of the words ‘prolonged’ and ‘inability’ and ‘sleep’. I do not find this definition hard to understand. In fact, the way I see it, judging from this definition, I think that, in fact, it would be quite impossible for someone with this sort of disorder (Insomnia; if you didn’t remember that like me, see Exhibit A) would NOT be able to sleep on command, especially if issues of ‘paranoia’, ‘hallucination’, ‘anxiety’, and ‘memory problems’ enter into the equation. I have, thus, logically deduced that this EEG, if in fact performed, would be a complete and utter disaster.

If I can reason that out with half a brain…what were they thinking? I could have predicted the outcome of such a test. Rest assured that I was correct in my original assumption.

Ironically, I’m tired now.

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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