The Difference An Advocate Can Make....(corrected)

Correction to text below. Wow - what a error to make! A few paragraphs down I had stated that the latter (without an advocate) resulted in better health care. What I hope became clear in the sentence following is that I meant former - with an advocate results in better health care. Some who know the details of how I came to be without an advocate by my side may suggest it was one intriguing Freudian slip...

I'm bowled over by the volume of support coming my way after yesterday's post, thank you to all who took time to express outrage and share incredibly kind offers to help improve my situation.

Let me first give you an update. This morning I received a call from the occupational therapist who had visited yesterday. After leaving here yesterday - visibly upset by the rules which were working against me in trying to be as comfortable and independent as possible - she placed a lengthy call to her supervisors to ask for special consideration for my situation.

Her pleading worked, I'm now permitted to keep my wheelchair pad - and I get a wheelchair to go with it. As grateful as I am, I'm disturbed by the inequity in our health care system (and I have a few bones to pick with our family law system as well) when it comes to how rare and/or serious illness (and the unique situations that come attached to them) are handled.

I'm grateful for the wheelchair that should be arriving soon, but why shouldn't anyone in my situation have the same opportunities for mobility assistance regardless of which town, city or province they live in? How does it happen that a palliative patient can have fewer (or no) assistive devices available to them than someone who is chronically ill?

Having had far more experience in the health care system than the average citizen, I could write a book on the subject of inequities to be encountered. In my humble opinion, there are lots of wonderful aspects to our health care system in Canada - but there's also plenty of room for improvement for patients with rare illnesses.

And then there's the second point on my mind regarding what has transpired over the last two days.  Over the last years I've been a traveller through the health care system with both an advocate at my side, and without one. From my experiences,  the latter (I mean former!!!!) leads to better health care. I've come to the conclusion that there is absolutely no doubt about that statement. Someone who sits by as a second set of ears during appointments, someone who makes sure that  all questions are adequately answered, someone to think outside of the box when roadblocks are faced. Someone to spur insurance companies and government agencies to do the right thing. Should it really have taken me being interviewed last year by the CBC to get funding for one of my treatments? And I note that the interview wouldn't have even happened had I not had an advocate tirelessly working on my behalf. Every single step is a battle in itself, and now doing this on my own I find myself falling between the cracks over and over again.

It's all well and good if one is only remembering what I used to be capable of; I was a person who had perhaps an overdeveloped sense of right and wrong and would fight for fairness for all parties concerned in a situation. That person just doesn't have much fight left in her, sometimes just getting showered and dressed for the day has taken all the energy I had available for the day.

I thank my advocates who've stepped in to make today better. My occupational therapist who pleaded for rules to be bent, the friends who quickly offered to rent/buy the equipment I need to maintain a small amount of independence and better physical comfort. 

I'm grateful for the friends (and sometimes near strangers) who offer this help knowing how hard it is to me to accept it, and also know me to be a person who'll try hard to fix a problem myself before ever letting on that I need assistance. Stubborn old me has to admit it. I just can't get through the rest of this journey without others stepping in to take the reins when I'm too tired to hold them.