Well, this is how I started the day, which indicated that I am plain tuckered-out. This is also my first appointment, an early morning wheelchair seating call for my new computer chair with recline and headrest for post-seizure and the hours of fatigue. We will be submitting for a basic electric one, as this manual will only service me for a few months at best, until I can’t self transfer anymore. But when the government is paying, if all they will pay for is manual, that gives more months to come up with a solution (which I guess could be me sitting there all day until care come with a catheter and bag). The wheelchair meeting also fixed my indoor chair so it can go right into the bathroom now, full access.
This was followed by the “big meeting” which was then followed by calls from many people and organizations. This included the BC epilepsy society (now a member) who said that 30% of people become epileptic or have ‘seizure disorder’ later in life due to brain injury, stroke, etc. Also talked through some seizures my GP was saying some of mine weren’t Clonic Tonic, and they were. His seizure info is sort of out of date (by like 40 years) and she said that currently there are about 200 types of “common” seizures for people under the epilepsy umbrella, and 2,000 more uncommon ones. I am getting a packet of info called, “Why it seems you spend your life recovering from your brain going “FITZZZZ!”?” But also got clarification from them on what an “emergent” seizure parameters are, as the care giver agency started with “any seizure requires 911” and we started asking about absent seizures (where I stare into space on a pause button for 10-30 seconds), and they said, “oh no, not that one.” And we asked about another, and it was “oh no not that one.” And then it turns out all they really know or care about are Grand Mal’s.
The afternoon ended with a call from my Case Manager saying that the Executive Director of Beacon, has unilaterally decided to negate the collective care agreement VIHA, Beacon and my Medical Care Executors agreed on and now has limited my care, retracting the agreement until I go to my doctor and give her a BLANK DNR (Do Not Resuscitate Order). This was timed at 4:25 so all the people at the meeting were gone and will not be back until Monday or Tuesday.
What the executive Director has personally asked me to provide is a document which dissolves Beacon and or its workers from any liability, up to and including if after a seizure when I am helpless, a care worker puts a pillow over my face. Or if I fall face down and the care worker doesn’t turn my head so I can breath. Seriously.
The care plan we crafted was to the specs of the Epilepsy society of Canada; using PT equipment and headrest, along with tilt and recline to make sure airways are clear, and aspiration into the lungs does not occur during recovering. What the Executive Director has done is choose to discriminate on my care BECAUSE I have epilepsy. She wants it so that I MUST give her a piece of paper so that even IF the care workers do NOT follow the plan we have crafted, and do not clear my airway (for which the care plan was created) and I die, then Beacon will not be liable. Why? Because they have a paper saying I have told them NOT to resuscitate me (which is the opposite of the two hours of meetings between the three parties today). Except the Executive Director is blackmailing not all of the clients, just ME, in order to get that DNR. I will be talking about this in length on the BBC, because you may remember a story about a school who made a student in a wheelchair who had seizures sign a DNR (So Not Resuscitate) in order to attend classes. That was on CNN. I think the emotional trauma was several hundred thousand dollars worth. Having the people you pay to make sure you STAY alive blackmailing you to give them a paper to ensure that they can watch you die…..gosh, I guess Xmas came early for me. Because, she didn’t choose to discriminate against me because I am an abrasive, arrogant and aggressive person who irritated her (or even a lesbian, or left handed). Nope, she is discriminating because I have EPILEPSY! OMG! Gee, I wonder your Honorable Human Rights Judge if there is any precedent to follow regarding discrimination due to Epilepsy in the last hundred years in case law?
Yeah, I was mad for two minutes, but then I thanked the manager on the phone for making my weekend. As by the end of Next Week, I will try to make sure that on CNN, BBC, CBC, and up at the Health Ministry, the name of Isobel Mackenzie, the Executive Officer of Beacon Community Care is synonymous with Mengele. Hahaha! Seriously, if I wasn’t dying, I would be happy I am about to be so rich; but at least I have the satisfaction of watching her squirm over the next few weeks with hatred of me. I am making up my, “Isobel Mackenzie wants cripples to die!” placard for my protest (got to be Camera Ready) in front of Beacon!
Anyway, that consumed a great deal of time today and the rest has been spent in anime, and the arrival of my 150 postcards from Japan! Hooray, I am just starting to enjoy the variety, like this school trip postcards!
Or then again, what about a nice goth loli card, that would be fun too yes?
Serious, I am very exhausted and near to another seizure and since I have every day until next Thursday already booked, the chances that I will have a health breakdown are very high. Beacon Home Support asked us that they be immediately notified when I am taken to ER and the hospital. They even want all the medical details. Is this so they can immediately update the care plan? No, it is because, if I cancel care within 24 hours, VIHA has to pay anyway. So if they KNOW I am at the ER, instead of MY careworker waiting at MY place, they can reassign them to another location and double bill for the same hour. Do you feel the love? Do you? I do! I know there is probably a banner in the office covered with dust with the phrase, “Care comes first!”
Okay, now what would postcards from Japan be like without some Traditional Japanese girls, like Shrine Maidens and School girls?
And finally, we also picked up some Yuri (girl/girl love!) and some (yaoi) boy/boy love. Mmmmm, anime goodness. And yes, when the post card arrives, just tell your significant other that “they are JUST good friends!” Yeah.
Tomorrow is Luminaria – I am hoping I will be conscious! (Dream big!)
15 hours ago