Managed to get in touch with the Alberta Health “Patient Advocate” last week. She even phoned and spent a half hour listening to my concerns. If you add up the time spent talking to a doctor over 2 open-heart surgeries, cancer surgery, an abdominal aortic stent operation and tumor removal, the total speaking time would be about an hour. Does this mean anything? Well first time someone on a patient contact hasn’t hung up me in years. I also have one place that accepts email messages and replies. No doctors I try and contact take email messages, none reply to phone calls, and even registered postal letters don’t return the receipt tab.

The advocate was quite pleasant and said she will “report my concerns to the Ministry of Health” but can’t reveal when, where or who so I think another effort is into the garbage. I found it completely strange that the medical system is so devoid of human contact. If I was that unresponsive I’d be declared dead–but I did die last time and this all zombie dreamin’?

Next step is to volunteer for the Lakeland Communities Health Advisory Council. I sent a query email about membership and will attend the next meeting reply or not. The district they cover is quite large, so it’s long drive to the meeting, but I think it will be worth it. At some point a person needs to break the isolation. The medical system itself is hard to access and even though my doctor’s clinic and the hospital are both a 5 minute walk from my house, neither provides any useful services. In fact, the County Home-Care Nurses are the one’s who keep me alive and actually know about medical stuff. So I’ll see what is up at the advisory council–I suspect it’s more useful than it sounds.

Some of my decisions to become more active come from reading “The Untethered Soul, the journey beyond yourself” by Michael A. Singer. The book is a kind of essay on how your mind works mixed with practical tips on holding your spirit together. Though it may seem obvious to seek medical help from medical systems, I’ve found here that the medical people are too detached from their JOB to actually provide help. They themselves know this but can’t admit it.

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  • thesmallc  On September 11, 2015 at 10:27 PM

    Scott, I am sorry your struggles with your medical team continue and that there’s no one outside the system who has been able to really help you.

    Good luck volunteering at the Lakeland Communities Health Advisory Council. I hope you get some answers and/or some level of support.

    I hope you’ve been feeling well otherwise.

    • scottx5  On September 11, 2015 at 11:39 PM

      Thanks for coming by Rebecca. In the process of looking for an advisory council mail address for my application there was also a couple of input links to try. The irony of Alberta having a hidden feedback link that gets you through the door that the troll blocking the entrance at the public “HELP” doesn’t have her copious rear end jammed into is pretty cool.

      Not sure I want spend time on a Council that has sat by and let the system go to shit here (if it ever was any good). I grew up in an activist family and have no patience for people blind to the need for change so I’ll attend a council meeting before volunteering, but definitely take advantage of the feedback door.

      Have also been inspired by this junk to go back to design work. Bought a membership to a User Interface Design association and they offer some really good free courses for members on design of systems for human use. The problems I experience are mostly in the horrible anti-user designs like blocked communication channels and nasty trolls at every door. It may not work to try a different access point but why not? Anyway, not in my nature to put up with fools or reduce myself to get help, plus it’s fun to fight back. In fact I think it’s healthy to return the shit they think I need to take.

      Have found a nurse deep in the system that I get along with. It has made a big difference. Was thinking there wasn’t anyone I could like in the medical system (without pretending like they do).

      So how are you doing? Bet when you were a child you were told not be grumpy but for a bit of each day it can’t hurt:-)

  • thesmallc  On September 15, 2015 at 1:41 PM

    Scott, I am not surprised you found a nurse who can alleviate the level of frustration you feel. There are some wonderful nurses and sometimes you get the best level of support from them. I am happy to say I’ve encountered a few. I am glad now you have.

    I’ve been doing alright. I am trying to push myself too hard these days and I am trying to figure out a way to just relax and go with the flow. It’s not like I need to prove anything but I do tend to be hard on myself from time to time. I have an upcoming Onco appt. this month — doing some blood work for markers which I chose to continue doing.

    I miss my childhood everyday. If I knew this life was going to be this complicated I would have stayed a child, if that was an option.

    Hope you’re well.

    • scottx5  On September 15, 2015 at 3:07 PM

      Rebecca, you are right about some nurses being the best. Don’t know her name and it will stay that way. I’m getting superstitious about using the graces of nice people too much–like I’ll use them up. Had a nurse in ICU after my heart surgery who talked to patients even if we were out of it. Another worked all night on a poor skinny guy from Sri Lanka in the bed next to me. He’d been run over by a car and left to die on an Edmonton street in January. She had to thaw him out and repair all the physical damage and spent the whole night singing softly and gently persuading him not to die. On top of that, my respirator kept shutting down so she needed a spare hand to keep resetting the switch.

      Just had a blood test for markers too. They don’t tell you if it comes out good or bad, though if it’s bad my oncologist will hear and then message my doctor and she won’t do anything about because her booking nurse won’t tell her. This way there’s nothing bad to report. Will blog about this soon as I’ve come up with a new plan to remove doctors from as much of my life as possible.

      I wonder if it counts as childhood being a patient? Except for nurses, everyone talks to me like I was a child. What they don’t is I wasn’t a NICE child at all:-)

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