“Good” start: Missing the Monday post!
Good reason: I’ve got a case of the shingles which developed over the past week culminating with a fairly raging case on Friday and a trip to the ER (after going to a Minute Clinic). There is head involvement (most of the blisters are on the left side of my scalp) with a secondary infection on my left ear. The head involvement put(s?) me at risk for sight and (more probably) hearing damage. ENT visit for tomorrow.
This killed my travel for this week (to visit Stanford) and perhaps for ISWC (which is next week). And it’s left me moving slow and trying to take it easy. While a sabbatical is not a vacation (it really isn’t! I’ve already pulled an all-nighter last week and that was with the (unknown to me) shingles!), the flexibility of the sabbatical has made this one of my all time better convalescences. Right now, in a normal term, I’d have COMP60411 running right now, which means at least a half day of lecture to prep and give, tons of coursework to design (and grade), plus 3-4 3rd year project students, plus plus plus. Obviously, my awesome colleagues (esp. Uli) would step in, but I find it really hard to 1) not worry about it and 2) not pitch in as soon as possible which is usually way too soon. (I had a mild 1.5 hour telecon today and I was beat after it.) Plus, the weather has been great and Swarthmore (and this house) are super duper lovely and comfortable. I’ve been sitting outside on the college lawn reading about medical reasoning and snoozing as my energy goes.
Last week, when I was thinking these were all “normal stuff to live with” and doing crazy things like commuting 2 hrs by train, my misery index was far far higher.
Two things prevented my from seeing medical attention sooner: 1) confusing about the symptoms (including completely failed googling) and 2) the stupid US health care system.
Toward 1: I had skin pain and sensitivity on my left arm since at least Monday (and was feeling crappy Sat and Sun). But it was hot and me and heat and my arthritis all don’t get along at all. Skin sensitivity is my standard state and skin pain is not uncommon (e.g., one of my major systems during my first arthritic flare and recurs with colds and flu). Zoe had a cold; Mom had a cold; maybe I had one. The pain got more intense and started spreading, but maybe that was just what happened. Maybe my arthritis was flaring up? Who knows! I googled for skin pain and really got a whole lot of nothing.
The second symptom were blisters. But the blisters were on my scalp. I was feeling random head skin pain (which was weird) but I’d been having that for a while too. It’s not like I could see the blisters. I thought I was having some annoying scalp acne. When it clearly went way beyond that, I thought I might be developing psoriasis. (I have psoriatic arthritis, but unlike my father and esp. my poor brother, I’ve never before developed the plaques, but there’s a first time!)
This was freaking me out. Active psoriasis plaques can be a huge fucking annoying deal and set off round after round of treatment attempts for the rest of your life. I really didn’t that, and I really didn’t want that here, in the US, on (university supplied) travel insurance with a new rheumatologist. If it were just all these things, I could probably ride it out for the next 9 months. WHICH INSANE THINKING!
On Friday, things clearly were progressing fast and weird. Zoe looked at the blisters and they didn’t match so we decided to seek treatment which didn’t mean “calling up doctors”. It meant “figuring out our insurance”. Which is pure evil. The CVS Minute Clinic would give us an appointment quick and had bounded prices, so we went. The nurse practitioner looked at me and said, “It’s probably shingles. Go to the ER. Today.” (Though she tried to avoid that because of my uncertain insurance status and apologised for sending me to appropriate treatment. She was a star. She code our visit as a “partial visit” since she was referring us to help cut our cost. She really rocked.
Toward 2: All the US system of insurance does is drive up cost, introduce unnecessary stress on patients and their families, impede and distort care decisions from EVERYONE in the system, cut people off from care, and bankrupt people. I seriously contemplated flying back to England because I knew my cost would be bounded by my ticket price.
In the NHS, I would have called NHS direct or dropped into a clinic or made a GP appointment or gone to the UK equivalent of the ER and never would I have thought about a bill. I would have aimed for the minimal intervention because who the hell wants to go to an ER. But a whole level of stress and fear about the whole experience simply would not exist. The disease was scary enough without the idea that I might impoverish my family!
Now, I have the many graces of a good job, actually pretty decent insurance, a loving and capable spouse and a super flexible job not to mention access to a car, computer, mobile phone, lovely housing, disease course is improving etc. etc. etc. etc. That is, I have it pretty damn sweet and this extra nonsense was STILL awful. I am just gutted to think about people with more severe conditions and no insurance, difficult transport, shaky job, etc. etc. etc. etc. etc. etc. What a HELL!
And what do we, as a country, get for this. One of the most expensive health care system in the world, i.e., the least bang for our medical buck.
Obamacare isn’t perfect, but it’s a hell of a lot better than what we had. It gets us closer to universal coverage (and those states resisting Medicaid expansion and John Roberts of the Supreme Court should face trial for crimes against humanity for what they’ve done).
The Republican terrorist tantrum to defund Obamacare i.e., screw sick people or we BLOW UP THE WORLD and btw we’ll screw people before then to show we mean business? It’s just evil.
You, my friends and relatives who supported any Republican in recent memory are complicit in the systematic infliction of suffering on your fellow citizens while damaging your own future. I find it literally disgusting and maddening. Figure this out please. Now. Show some fucking patriotism and solidarity and plain common sense.
On the plus side of all this, I did have an interesting chat with the NP at the Minute Clinic about their electronic heath care record system and identified a key complaint that our collaboration is meant to address, so I’ve started designing experiments around it. My Siemens pals have already been in talks with them, but it was cool to get a ground level view. Maybe I can have her come in for a few tests and experiments!