Today was seriously cool! I was invited by two amazingly dedicated, wonderful people, David Cubberly (on Board of Directors of CanLyme) and Lana Popham (Saanich MLA-> Member of the Legislative Assembly), to speak to some MLA’s about Lyme disease. All of them were invited, and about 30-35 showed up, which is saying something as there are only 85 MLA’s total! David brought a copy of a new book about Lyme called “Ending Denial” for each of the MLA’s who came. I spoke to many of them before and after, and I hope that they took away from the meeting a greater knowledge of Lyme disease in general, and from me, its devastating impact. We tried to stress the main issues, about doctors simply not treating Lyme and the ELIZA testing problems. It was pretty sweet to meet those representatives from all those distant BC places; interesting, friendly, well-spoken people…wish I could have talked to them all some more!! If only I had met the dear health minister…I would love to meet him and ask him a few questions! 😀
We also got to listen to question period in the assembly house place, which was very interesting! The last time I was there, in grade 6, I had very little knowledge of government proceedings, what has happening in the province, and little patience for their formalities. Now, I can say that I have definitely improved on the first two points, thanks to all those dull socials lectures and reading the Times on the bus, but I still found it a little difficult to keep up, although question period was certainly heated and very fascinating! Mom and I were introduced to the house by Lana, and then she made a two minute introduction of a bill about Lyme disease, which they were going to discuss later I guess. It was utterly exhausting, but I am so glad I went!
|The parliament building’s architecture is always a treat. If you are ever in our beautiful capital, its not to be missed!|
|The lovely room where we met with the various MLA’s, with such comfy chairs and a lot of old discharged library books on shelves around the room!|
|Oh yes, there was a piano. I couldn’t help myself.|
Below is the speech I gave to the assembled MLA’s. (just imagine my slightly monotone voice, and it will be like you were there too!!) Enjoy!~
Hello! Thank you so incredibly much for coming out to this informal gathering to learn about Lyme disease! (Your curiosity could keep you safer someday). My name is Nicole Bottles, and unfortunately I am sick with Lyme Disease. A little over 2 years ago I was just a typical teenager who loved playing piano and French Horn, singing, chemistry, history, and hiking. I have not been able to attend school since about half way through my grade 10 year. I should be a senior now.
The symptoms started with breathing issues and chest pain, and graduated to vague joint pain, dizziness, nausea, headaches, weakness, and memory and concentration issues. My symptoms progressively became worse and worse, including intense pain, no short-term memory, swollen joints, exhaustion, writing issues, and getting lost or distracted easily. 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. The culprit? A tiny bug the size of a poppyseed, and a hypocritical medical system that left me far behind.
Imagine my dismay, that after seeing 9 specialists, and being tested for everything, doctors still were drawing a blank as to what was causing my strange illness. Even though my mom brought a check-list of Lyme disease symptoms to each doctor, it was quickly discounted. I was ‘too complicated’ to have Lyme disease. They much preferred the misdiagnosis’ of asthma, growing pains, a kind of arthritis, Lupus, an eating disorder, or a deficiency of some kind; anything but the ‘rare’ Lyme Disease. If the doctors had been trained to diagnosed my condition based on the symptoms instead of a flawed test, it would have cost about a $100 for a few weeks of antibiotics, and saved me great suffering. As it stands now, it has been 2 years of horrific pain and over $100,000 in medical bills, all paid out of pocket.
If getting a diagnosis in Canada is hard, it is impossible to get treated. I spent almost a year living in the US, 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 Canadians sick with Lyme Disease now for health agencies, medical professionals and government to believe so.
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 for the medical profession to continue to remain absurdly ignorant of this fact. 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. It begs the question, why is nothing being done? It is time to act. Why are we denied our health care rights? There are thousands of Canadians suffering with Lyme Disease. The ridiculous, ‘old school’ IDSA 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 or misdiagnosed. The ignorant, blind-eyed approach that most doctors have is clearly not working. Simply put, doctors need to be educated in the clinical signs of lyme disease. Patients need to be diagnosed and we need to be treated in Canada.
I would please implore you to read the new Canadian book about lyme disease called ‘Ending Denial’ which David Cubberly has so graciously given all of you a copy of today. And I ask you to dig deeper and find out why Canadians are being denied their right to health care when they have lyme disease. And I ask you to help us to right this wrong. Our suffering should not be in vain. Tell your friends and family the dangers of Lyme disease, and the issues at hand. Knowledge saves lives. Because, honestly, it could have been you sitting in my chair today. I speak out, so that it would not be.
Medically speaking, I am definitely still bumping and banging along on the road to health, but the road back from hell isn’t paved. I still take IV medication daily through the Port-o-catheter in my chest. Unfortunately, I still do not have a diagnosis in Canada to this day. I do not have a doctor in BC willing to treat me for Lyme Disease, (or for any other illness!). The suggestion alone of ‘lyme disease’ is enough for a physician to bolt from the room. I still have to travel to the US to see my doctors, at huge personal expense.
Everyday is a challenge, but one that I face without a thought of turning back. I know eventually I will get my old life back, and be able to shed the disease, or at least tame it. The thought strengthens me greatly. I just can’t wait!
I leave you with this quote by President Barack Obama:
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”