2 vastly different scenarios:
2017-2018, no primary care physician. I go to ER because the rash I have has finally driven me to seek help. Excruciating. From my waist down to the bottoms of my feet. Yes, including my lady parts. And after a month holiday in Europe, where I made the best of it. I think Harald cleared out pharmacies in Croatia looking for a cream to help. [I love this man - Ed.]
I get an appt with "the" dermatologist and she doesn't look at me, just tells me I'm allergic to my laundry. [Yeah, bitch don't you think I tried that? - Internal monologue-Ed.].
I go home for a month (now we're in December 2017), and then come back. Nope, I'm doing something wrong. I refuse to bow down again and demand a biopsy. Halfheartedly, she takes one. I follow up and she tells me I have arthritic psoriasis. Prescribes what I find out later are unholy levels of prednisone.
Didn't sleep, didn't eat, like maniacally busy. Generally feeling like when I'm in OCD/act/react mode.
So finally I crashed, hard. H took me to the hospital and they begrudgingly let me in. From there it's a blur for the next 3 months. How I managed to go to the Dominican during this time, I don't know. I do remember meeting a nurse on vacation (from NB!) and she took me aside and asked if there was any care she could help with. Damn, nurses! Stop making me cry!
Post-crisis I'm trying to manage all this stuff. I've been told I'm going to die by Christmas (of 2018). I have no GP who sees me as a whole person. I'm body parts, basically. I have a clinic dr, who won't prescribe me Effexor (what, like it's misused by the kids today?) I am responsible for managing all my meds and contraindications, times, stuff I should not take.
Clinic dr knows I have cirrhosis, and prescribes about a THOUSAND Naproxen for my frozen shoulder. Um, no? Super arrogant ortho surgeon tells me to take Advil (same ibuprofen), says he knows nothing about the liver, and proceeds to argue with me about how acetominaphen will kill my liver. No, it doesn't, it'll kill my stomach causing ulcers and cancer. At this point, do I really care? There's a poster of Dr. Sexypants (among others) for the fundraising campaign, and I so want to tag it rudely. Yes, I am a 15yo boy.
Summer 2019- H got fed up with me frustrated and mad at the health care system, so he called the deputy minister (small province is better for this?) and told them he'd be contacting CBC and picketing the NB Parliament. 30 minutes later I get a call at work from the government, and the doctor I've been given (both of us). Random. Then H fills me in. It may have been lies and bluffing, and we may have jumped the queue, however in my defense I was told I'm going to die and that's it, nada. Nothing more. Gimme a little break here, eh?
2018 Summer - 2021 Summer: no reactions, some intevention needed when I broke my shoulder and was given synthetic morphine, and I ended up in the hospital [here].
That was weird and profound and humbling.
July 17, 2021 - H and I are up near Moncton for Ballet by the Ocean. He notices my eyes look yellower than normal. The glass of wine I had planned was scrapped. And it started then. TBH: H and I both lost our contracts on the same day, July 4. So I did my old "fuck it" behaviour and threw caution to the wind. For 2 weeks. Expensive, truly.*
Through the various procedures and tests and waiting and following up, my GI determined that my numbers had changed again [really? after 3 years? funny, that] and that we were looking at more like the 18-24 month trajectory.
I kick it off with,
me: So, if I were going to have a big party with everyone I loved can I wait a little while? Or should I put people on deathwatch?
him: [trying not to laugh] um yes I think you're not in any big hurry. Unless you are? [suddenly looks very serious]
He also likes my joke about setting up an ATV trail around here. 17yo have great livers, and no sense. Around here, it's called young, drunk and full of [ahem] spunk.
A bunch of procedures are done, paracentesis, esophogal varices banding, and blood tests every week.
I contacted a group I came across, The Centre for Grief and Compassion here in Saint John. They specialize in offering therapy for those dealing with loss. Angels. Anyway, my therapist told me that I might want to contact palliative care. I looked terrified enough that she said "no, no, no it's not hospice. This is to help upon diagnosis - we have you as a client and can offer you services beyond what the regular regime has."
Oh. Well, offer away. So now I have 4 hours of in-home care to help me do stuff, like we cleaned the fridge and drove to the recycling depot the last time. And [most exciting!] she'll go for walks for me on the beach, so I don't fall into the ocean. Seriously, I could sadly enough.
I got approved for a crazy expensive/brand new medication by insurance. I have so many people around for support. This time.
When I didn't have a GP, no one would talk to me as if I didn't count. This is the situation for @40,000 people in New Brunswick. There's no requirement that retiring doctors provide at least some kind of continuance of care with NPs or GPs when they leave. Nope.
There's also no rent control. grrr.