#hospital glam

Subtle hospital glam. Ambulatory medical tests require you to ‘go about your ‘normal’ activities’ while undergoing the testing. This was my latest 24hr holter monitoring (ambulatory ECG). It happened to fall on my 10 year anniversary with my love.

This was taken as I was getting ready to go out for our date. Seeing these photos a week later, I look sad; even though that wasn’t my intention. On reflection I think I was sadder than my steel-braced consciousness was allowing me to perceive. A night or two later I had my very first enormous, sobbing, spluttering cry since the arterial dissection/stroke in 2013.

When I took these photos I intended to share them as a ‘looking glam and awesome, despite this ugly medical inconvenience’. I wanted to look peaceful. Divorced from that moment, instead, I look somber; almost funerary given my clothing.

Grieving is fucking hard. It’s even harder when it’s for yourself.

Late night #HospitalGlam because maybe some things are meant for darkness. Today I advocated for myself to get the electrode connectors that I’m not allergic to. Sometimes it’s even the small wins that power our engines for better care.

Hospital Glam, the trying not to laugh edition. Someone was off camera making jokes! It helps that I was put in a fantastic mood by one of my favourite techs/nurses. There’s a holter monitor underneath all of those layers…

HospitalGlam :; errors in framing. I like it anyway. Letting go of perfection has personally been my biggest obstacle with disability. It’s also been one of my greatest learning moments… To learn that absolutely nothing will go exactly as planned, or even expected.

That to seek perfection is to seek out futility. ///

PT this morning. At this point I’m only going for osteopathic management. Hopefully after I recover from surgery I can get back to strengthening.

Some Neurology HospitalGlam. My neurologist is brilliant. Treats me like an equal and partner, reasons out management and plans of action with me, takes my input at face value, never patronizes me or doubts my symptoms or reports. To top it all off, fantastically and brutally honest. From a previous appointment ‘well, there’s still a lot we don’t know about the brain, so the answer probably lies there somewhere.’ And from today 'it definitely sounds like another TIA but we’re already doing the treatment so there’s not much we’d change.’

I’ve worked damn hard to build my current medical team and they may be inexperienced with connective tissue patients, but they are pretty fine doctors.

Android in Space. I’ve finally discovered a way to break the icy exterior of my Internist… Wear awesome space leggings. First time I think I’ve seen him smile. Thanks, Jeffie! Also, my Zak Smith shirt… One of my faves.

HospitalGlam from this morning… Some blood tests which I’m used to now, but I forgot to warn the phlebotomist about the Ehlers-Danlos and she used a large needle. This resulted in two things… A mild vaso-vagal response due to the pain (blood pressure drop/dizziness etc) and then as I was leaving I sprang a leak and gushed blood everywhere. For whatever reason connective tissue disorders can cause excessive bleeding in some cases. I have this problem with a lot of things, but as long as they stick to the small child sized needles I usually just leave with a fantastic bruise.