All this being said… the Habs did lose their series yesterday and are therefore out of the Stanley Cup race. Sucks. I wish that was the reason I was “meh”, and maybe it doesn’t help, but I can definitely recognize the post-anxiety-attack blues when I feel them.
Last night, Jan and I were some of the luckiest bastards around: we had tickets for game 5 between the Canadiens and the Rangers (who were leading the series 3-1)! And just as expected (read: hoped), the Habs dominated, the goals were plenty and we won by a convincing 7-4! Woohoo! I was one happy gimp. 🙂
Our amazing friends pitched in and bought us tickets as a pick-me-up for all the stuff we have been going through. Didn’t I tell you I was lucky, well loved and superbly taken care of? You guys are the best, your gesture was such a wonderful external manifestation of how awesome your support has been throughout all of this. And clearly you guys know what you are doing: out seats were directly in line with the goalie and we saw so many of the goals live! So. awesomly. exciting. Allez Montréal!
I was thrilled to be having a “good walking day” because getting to our seats would have been very difficult on a bad day, and with everyone in front of us constantly getting up out of excitement I would have missed half the game. Jan kindly wheeled me to and from the car, the bathroom and even carried me down the steep stairs at the end of the game (my body was starting to give me a giant foam middle finger).
This video was filmed last night as my face, jaw, teeth and neck were in mad pain! It has been coming and going all day today as well and usually gets worse as the day progresses. Good things my ability to stand and walk seems to be improving daily, I was able to go on a few short 200m walks yesterday and today. Life is good. 🙂
Yesterday ended up being a pretty sweet day. I was able to do more walking then I have in over 2 weeks and it felt pretty amazing! I also went to a friend’s afternoon surprise birthday party, had a fun time and even stayed for about 3 hours! It was nice to feel slightly “normal” for a change.
This morning my inflammation was still lower than it has been in days and I was able to do a 20 minute yoga session (all floor poses, done very slowly and gently). It was nice to get “into” my body, breathe slowly and mindfully, without automatically being completely overwhelmed by pain and discomfort, as is often the case. The less interesting part of the day so far is that I haven’t been able to keep any food down since this morning. Hopefully a cup or two of fresh ginger tea and some (real) chicken stock will help calm the storm and turn my digestion around.
The video below was filmed yesterday, so as I mentioned this is a REALLY good walking day. As tiring, difficult and sometimes frustrating as walking is for me, I make it a point to do it when I can. My body absolutely needs to get some movement so that I don’t become total jello over the next few months. The transport chair is still very useful as even on good days walking anymore than 50 meters is too exhausting.
A side note about the whole concept of how I am doing: when I say I am doing well, I do not mean that my physical state is good, that my pain level has been reduced or that I have any energy to speak of. What I mean is that I am very well in spirits. I want to fight this illness, I want to live a good life, I want to fight for this cause. I am well loved and cared for, and I have the best friends in the world. The love and support I have received over the last few days has filled my eyes with happy tears and my heart with renewed energy to continue this blog, to keep sharing my story, to keep trying to make a difference and help the lives of others whose pain I know all too well. I am eternally grateful and will never forget your support.
And also, make no mistake about it, I’m a tough chick. 🙂
Oh man! What a whirlwind weekend it has been. Let’s start before the very beginning…
By the end of last week, I was quite nervous about Saturday’s Lyme disease awareness protest. I was ecstatic to have found the event on Facebook and knew that Jan and I absolutely had to be there and were going to be there no matter what! But I also knew it wasn’t going to be an easy road.
Today was and is a very special day. Along with other Canadian cities (CN Tower in green and all around the world apparently), the Association Québécoise de la maladie de Lyme organized the Manifestation pour la journée internationale de la maladie de Lyme (International Lyme Disease Day Protest). I was there… we were there. It has been an exhausting day, on more levels than I can count (and the “funny” thing is I spent all of it lying on my couch or sitting in a wheel chair).
Here is a clip from this evening’s CBC Evening News, where the problem is presented and I make an appearance.
Please check out the photos below. Peace.
Under Our Skin is a must watch documentary about chronic lyme disease. It took me 6 sittings to finish it as I cried my eyes and heart out. These people’s stories are my story, their pain is my pain, their revolt is my revolt. You will find the movie it its entirety below.
Please note, that this documentary is about the United States. In Canada, the situation is even more fucked up. First of all, there is denial by medical authorities of the existence in certain regions and prevalence of Borrelia burgdorferi (and associated co-infections) carrying ticks. Canada’s public health agency denies the existence of chronic Lyme disease and medical associations have cracked down on doctors who prescribe the necessary long term multiple antibiotic treatment. Doctors usually don’t know how to recognize it or how to test for it, preferring to make the assumption that the patient needs psychiatric help, or diagnosing him with fibromyalgia, chronic fatigue syndrome, multiple sclerosis, etc. Doctors refuse to treat patients who know they have Lyme disease, who pay their taxes (if able to work) and yet have to pay out of pocket to get treated in the States. And if that wasn’t enough, well the two-tiered testing method used in Canada is grossly inaccurate, it is known to miss many lyme cases as it does not detect the infection immediately after the bite and also completely misses chronic lyme disease. This is a very short summary and only scratches the surface. Lyme disease is an extremely complex and multifaceted issue.
Oh, did I mention that all this was some seriously fucked up shit, tabarnac?! Pardon my French.
Synopsis: In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it’s a global epidemic. A real-life thriller, this shocking festival hit exposes the controversy surrounding chronic Lyme disease. Following the stories of individuals fighting for their lives, director Andy Abrahams Wilson reveals with beauty and horror a natural world out of balance and a human nature all too willing to put profits before patients. The film follows six individuals including major league ball player Ben Petrick who report chronic symptoms, which they attribute to persistent Lyme infection. The majority of the film is devoted to the storyline of these patients and their reported recovery. The film also focuses on state medical board investigations of Joseph Jemsek and Ray Jones, two physicians who prescribe long-term antibiotics for chronic Lyme disease.
Under Our Skin 2: Emergence is a sequel set to come out this summer and is said to “take the viewer on a journey from horror to hope”. I’m looking forward to it. As I mentioned before, hope is an incredibly important element in this type of healing journey, as without it you are as good as dead.
For all the long years I have been seriously ill,
the medical system, for me, stood totally still.
My life and health have had to foot the bill
and I had no choice but to take the red pill.
The medical world can be a sad and insane place,
someone always trying to win the sickly money race,
arrogance and ignorance are far too common place,
all the while patients lose hope, dignity and grace.
Every chronic sufferer deserves quality care,
if they are to avoid complete soul-crushing despair.
Physicians must take each patient’s pain seriously,
we cannot leave humans to suffer like this, needlessly.
Years spent going through Dr. Google’s chatter,
I finally found myself at the heart of the matter:
it turns out most quacks are actually not so wrong,
listen to them and you may eventually get strong.
It’s time for the medical system to become radical,
which means “root cause” and not at all anarchical.
As long as the sworn oath remains so hypocritical,
I will stand up, fight and be massively critical.
Oh man. I have a pretty serious case of the flu or sinusitis or something of the sort. A video is out of the question as talking is prone to giving me a coughing fit and making me look really sad and pitiful (and nothing like the true warrior that I am). All the brand new symptoms combined with the new antibiotics symptoms and the good old familiar symptoms are one giant mess making me much more zombie-like than I would like to be (both physically and mentally). It would be, as it often is, far easier to tell you what is not wrong with me than vice-versa. I could probably draw an anatomically perfect skull right now, along with the muscles and a bunch of other relevant structures, just basing myself on the crushing pain and pressure that are making my head and jaw want to explode (that’s if only I knew how to draw at all).
I hope this does not last too long. See you on the other side! 🙂
Please note: the antibiotics do not kill yeast, in fact they create an environment where it can thrive. On top of 5 antibiotics (building up to), I am on Nystatin which is an anti-fungal used to control the yeast population, and this medication can also potentially cause a detox reaction.