April 3, 2016
It isn’t easy managing conditions like Ehlers-Danlos during events and conferences, but it gets easier with time, practice, and patience. Learning how to prepare and pack is crucial. You’ll be out all day, so don’t forget to bring the essentials. (Despite carrying a mini-pharmacy in my bag, the rattling didn’t attract too much attention.)
The tips I have for surviving are simple enough that anyone can keep them in mind-
–Drink lots of water. Schedule time for lunch or a snack around noon or don’t, I’m a blog, not your mother.
–Don’t drink on an empty stomach.
–Keep your shit together. Wear lace-up boots to hold your ankles in place when they dislocate. Keep salt packets in your pocket in case your blood pressure drops. Keep your pain meds bottled stocked and use it when you need it, and chug water—obvs.
These are my rough recollections from the absolutely insane marathon week+ I spent at this year’s SXSW. The festival spreads across most of downtown Austin and some outlying neighborhoods, so going required quite a bit of stamina. Somehow, I only had to call it in and rest for one of the [X] days I was there, but that was more from the heat and me being stubborn, so I guess it doesn’t REALLY count. But on to the numbers:
miles walked per day: 9ish
flights of stairs climbed per day: 10ish
dislocations during sleep (that I can remember): 3
sub-laxations of joints: 15
bouts of acid reflux : 6
hours of sleep per night: 5/6 -ish
I got more sleep once film started to wind down but I was pushing myself more and more… and stayed out less than last year as a result. I’m not too bummed—I saw a lot of films, averaging about 2 per day and sometimes more depending on the schedules and traffic (the Obamas being in town made some days a tad tricky). I did end up missing out on a few opening parties and after parties, yeah, that did kinda suck. Overall, I think I took fewer pain meds compared to an average work week but still worked in my evening muscle relaxers most nights, at least on those that I took it easy and didn’t drink.
With a few projects I’ve been working on entering festivals in the coming months I’ll be tested at my little survival tactics again, now I just need to remember to follow my own rules. I’ll be checking in with my electrophysiologist for a device tune up and will update you on the number of PVCs and runs of tachycardia I likely experienced in the last month. Here’s hoping I didn’t break my beats per minute record this time.
Cyborg update: we’re working furiously on the full rough cut of the film and will be entering our FINAL round of fundraising in the coming months.
Additional note: I’m working with a photographer friend of mine (Anastasia Page) on a project exploring invisible illness and the oddness that having Ehlers-Danlos can look like. Here’s a gif from the test photos:
January 28, 2016
Should have posted here ages ago, I know. I have loads of writing that will be rolling out here soon but for now, a taste of the documentary.
We’re working on a full rough cut and will have more images and clips.
Also, if you like the music featured, check out Rival Consoles!
February 4, 2015
It’s been ages since I’ve updated, I know, but we’re still moving forward on Cyborg! We have a few events coming up that I cannot wait to write about but can’t quite yet, things are still in processing and planning.
Don’t fear, we haven’t been buried under too much snow or production to keep us from plowing ahead. (Yes, that was an unintentional pun… I’m not sorry about it.)
I promise my next post will be slightly more coherent.
For now I’ll leave you with:
My cyborg Halloween costume, a costume I’d been thinking about creating for ages:
and some particularly pertinent street art that’s been popping up around Chicago. Cheer up lil guy, winter will be over soon enough.
February 16, 2012
We’re just mid way through Heart Month!
Every foundation and organization is doing what they can and many make it easy as ever to get involved.
Have you been spreading awareness for heart conditions?
December 30, 2011
More stills from our last shoot! Happy New Year everybody!
December 17, 2011
December 16, 2011
Our trip was definitely interesting. Being that this is a major climactic point of the film I can’t divulge too much in the way of information I can at least tell you that we got some phenomenal footage. The people at the clinic were fantastic to work with and we had full access to film all of my diagnostic procedures. A big big Thank You needs to go out to Traci, the PR rep who’s been working with us since this past summer.
Stills coming, more details later, working on sorting and tagging footage now.
December 16, 2011
a mix of photos I took on my phone and screen captures.
December 7, 2011
We got the Mayo Clinic itinerary this week. We fly out there Monday (little leeway in case there’s any snow storms to delay us) and everything starts Tuesday. Here’s a quick run down of what’s in store.
Tuesday’s schedule (starting at 8am):
Signal Averaged ECG
CT Scan of my Heart
trip to the Pacemaker Clinic to meet with a Nurse Consult to turn off my ICD for the next test,
Exercise Treadmill Test (Stress Test)
Wednesday’s schedule (also starting at 8am):
-meeting with Geneticist, Dr. Kirmani (looking into the possibilities of Ehlers-Danlos Syndrome being linked to our heart problems)
-meeting with Dr. Ackerman
As a director I’m very excited to get this footage. It’s going to be really amazing and I’ll get to really dive into the emotional aspects of what going through diagnostics can be like for a patient.
on the other hand…
I’m the patient. I have to go through it all over again and the some in two days… it’s alot to process and it’s bringing up things I thought I was over… but I guess I wasn’t quite done with all of that yet. I’m nervous but I’ll be alright.