Advocacy Is...

Hi y'all!

At this point, you're all aware that Congress has decided to strip all provisions for insulin from the prescription drug pricing bill.  You've seen my anger on social media, so I won't rehash it here, but let's just say the past few days have been consumed by our collective effort to fight back.

In the midst of all of this, I've been doing a lot of thinking about advocacy. (I mean, not exactly a surprise, seeing as basically every waking moment since the news dropped has been spent on exactly that.)  So, what is advocacy?  For me, a whole lot of things.  Here are a few.

Advocacy is putting your own mental health spiral on hold when you get a text breaking the news - "they screwed us over again" - and suddenly nothing else matters.  It's an emergency Zoom meeting link sent in an email with the subject line "what the fuck."  It's all hands on deck, all lives on pause, all in until we figure out what to do.  It's the exhilarating feeling of jumping into water without knowing how deep it goes - how long the battle will last.

Advocacy is an hour-long meeting that takes you from "it's good to see you again, Senator" to "with all due respect, sir, that's not good enough."  It's the realization that you're no longer scared of authority figures, and the pride that comes with that.  It's the sting of disappointment when your favorite Congressman tells you, as gently as he can, that you might have to wait for the next election cycle, and it's the sting of your split knuckles when he ends the meeting and you punch a wall in anger.

Advocacy is an endless string of voicemail boxes, dial tones, and heated conversations across the country.  It's the feeling of your voice going raw from hours of repeating the same call to action.  It's typing up emails to Senators while you sit on hold with their offices.  It's hanging up the phone and screaming into a pillow, playing a Green Day song just so you have an excuse to yell a few curse words, and then taking a breath and dialing the next number.

Advocacy is camaraderie with people you've never met.  It's a lunch break FaceTime with exhausted faces and coffee cups on screen and blood sugar monitors beeping in the background.  It's organizing for a rally you won't be able to attend, lamenting the price of plane tickets and the existence of work schedules, brainstorming ideas for protest signs and cheering as they're written.  It's pooling your Capitol Hill contact lists to schedule as many meetings as you possibly can and texting the group chat whenever you get a particularly clueless staffer or a particularly powerful connection.

Advocacy is anger, bitterness, exhaustion.  It's Zoom fatigue so profound you feel like a high school senior again.  It's an overpowering rage at the broken system and the people who uphold it.  It's long rants to your partner and long emails that will never get a response.  It's sharing your story - your trauma - countless times and seeing how little it matters.  It's the painful moments when that voice in your head begins to wonder if your work means anything at all in the face of such steep odds.

Advocacy is, at times, despite it all, the only purpose I can find.  It's the only thing worth doing when the world says there's nothing left.  It's the thing that gets me out of bed on my worst days and the spark that turns defeated anger into dry, brittle, flammable rage.  Advocacy is, above all, the art of creating hope where none exists.  And for that reason, it is everything.

I don't know whether our efforts for this bill will pay off, but there's always another fight around the corner.  Stay strong and stay safe.  Love you all.

Pump Journal

 Hi y'all!

So, here goes.  Hi world, I'm officially an insulin pump user!  I've had the Tandem x2 pump for a full week now.  It's been... a lot to adjust to.  Stick with me for a minute and I'll take you through what the Tandem trainer described as "the first week of the rest of my life."

Day 0

Ok, I'm not totally counting this as a pump day because I haven't turned on Control IQ yet (Lantus is working till midnight so I don't want a double dose of basal).  But hey, I'm wearing a pump!  I had training early this morning and have spent the day getting used to my new Tandem x2.
Insertion was... fine?  Better than I expected, for sure.  I was pretty anxious about that part, but it wasn't much worse than a Dexcom insertion or even a Lantus shot (PWDs, y'all know exactly what I mean, lol).

Being connected to a tube feels strange, but I definitely anticipated that.  And I can now officially say this is the longest I've gone without an injection since I was 7 years old - wow, that's something, isn't it?

Excited for Control IQ to kick in tonight.

Day 1

Today was a bit rough, both mentally and physically.  Trying to step back and give y'all an honest look at how things are going.  Let's see.

I do really like Control IQ.  I'm still struggling with trusting the algorithm to the extent that I should, but I think that'll get better in time.  The biggest hurdle right now is that I have to relearn how to count carbs, something I never actually mastered because I simply never needed to when I was doing my own doses.  I feel like a lot of the control has been taken out of my hands.  It's incredibly frustrating and makes me feel powerless over my own condition, which I definitely didn't expect.

I'm also working through the whole visibility thing.  I'm trying hard not to let my self-confidence go too low, but it's a battle.  Still ended up hiding in the bathroom at work to do my insulin because I didn't want to deal with all the stares and questions about my pump.  It'll get better, I know it will - I'm just not there yet.

Day 2

Feeling a little bit of classic T1D frustration today.  Got a few of the usual comments from folks at work - and yes, I'm very very used to that, but it was my first time dealing with it since getting my pump, so it flustered me more than usual.

I've posted about this before, so I won't go off about it right now, but please, non-PWDs, understand that there are things that are ok to say to us and things that you really really shouldn't.  Yes, I wear machines to keep me alive, but I'm still a human being.  Good intentions can only get you so far when you're saying ignorant and hurtful things.

Day 3

First site change today!  And it turned out to be a double site change because, true to form, Dex died overnight after only two days.  All in all, the process took over 10 minutes - I had to stop and check my notes several times to make sure I was priming the cartridge correctly.  For someone who can do a Dexcom site change in 120 seconds, that was a less-than-stellar feeling, lol.  But hey, at least I did it!

Blood sugars have been good; honestly, this is already the longest I've gone without an overnight low in months, and I'm noticing a tangible difference in my energy levels as a result.  Carb counting is still proving difficult, but I'm getting a little better every time.

Day 4

Today’s been a roller coaster.

First of all, in an effort to boost my self-confidence, I wore a crop top that clearly showed both my pump and Dex. For those of you who don’t know, a crop top is a daring move for me on the best of days because it brings up a whole bunch of body image issues, so I can’t really articulate why I chose it on this particular day; I guess it was an attempt to “jump in the deep end” in terms of visibility. It worked a little bit, until it didn’t, but I was sorta proud of myself anyway.

I also posted a pump pic on social media for the first time, and then promptly deleted Instagram from my phone so I couldn’t spiral over it too much. Hoping that will get easier soon, lol.  I'm forcing myself to be as open and visible as I can, because my role as an advocate demands it and I feel like I owe it to my community, but that certainly doesn't mean it's easy.  Grateful for the support of my friends today.

Day 5

Hello from the OR!  I'm with the Lurie transplant team today, which means I get to test-drive exercise mode for the first time.  I'm writing this between a liver resection and a kidney transplant, and so far, things are going smoothly (both with the surgery and with the pump, lol).

OR days are always super hard on my blood sugar levels - I don't really get to eat, or drink, or even sit down.  So I've been keeping my fingers crossed that having a pump would help with that, and it seems to be working beautifully!

Today has brought up a lot of Thoughts(tm) about T1D ignorance and misconceptions within healthcare, so expect more about that in a future post.  Had a nurse tell me today that my blood sugar of 157 was too high, and I literally just started laughing because I was more worried that it was dropping low.  It was funny in the moment, but I'm trying not to think about what would happen if that nurse had a T1 patient.  Anyway.  More to come on that later.  Transplant time!

Day 6

Site change day!  I ended up waiting till the evening to change, since I still had enough excess insulin left in the cartridge.  I was proud of how quickly it went this time - definitely an improvement from a few days ago.  Having a site change every 3 days is one of the hardest things about wearing a pump, and I'm dreading having to figure that out once I'm back on campus, but I'll make it work.

I've been fighting some stubborn highs today, but nothing unmanageable.  Proud of how quickly I've learned to anticipate what the pump is going to do and incorporate it into my decisions.  I still occasionally have moments of oh shit, I'm gonna be wearing this thing for the rest of my life, but those are getting less and less frequent.  I'm getting used to untangling myself from seatbelts and learning how to not lay on top of my pump when I'm sleeping.  Progress!

Day 7

Wow, it's hard to believe it's been a week.  What a roller coaster it's been, right?

All in all, I'm really glad I switched to a pump, and pretty surprised by how quickly I've gotten used to it.  It's imperfect, and often difficult, as all things are with T1D.  But hey, I wouldn't be here if I hadn't learned to get through the hard times.  And it can only get better from here!

Thanks for reading, thanks for supporting, thanks for being so wonderful.  Love y'all very much.

Hot Diabetic Summer (or, thoughts about confidence)

 Hi y'all!

Hope you're all doing well!  It's summer, so true to form, I have been doing approximately 0 relaxing.  Work, shadowing, babysitting, studying, more work, etc.  Just how I like it!  And I do have the update that I alluded to in my last post... we'll get to that in a minute.

Someone I love very much was recently diagnosed with a chronic condition, and we had a long conversation about life after diagnosis and how to handle conversations with friends and classmates.  Sometime during the course of our phone call, she proudly mentioned her new medical alert bracelet (with a beautiful pink band, of course).  I laughed and told her about how excited I was to get a pink and purple one when I was diagnosed at age 7.

I haven't worn a medical ID in years.  My endocrinologist told me to get one for college, and I meant to, I really did.  But... somehow I couldn't bring myself to wear it.  I remember how proud I was of my bracelet in first grade - not just because it was pretty, but because I saw it as a symbol of my strength, and I was eager to tell people what it meant.  I've never been one to hide my condition - y'all know that.  That's why my advocacy journey was such a natural one.  Speaking to senators about my diagnosis didn't feel much more difficult than speaking to my classmates or teachers.

But over the past year or two, especially since starting college, I've felt that openness become harder and harder.  It's interesting, and surprising, and a bit frightening, especially since I don't have a reason that I can articulate.

Logically, I've always known and understood the stigma that comes with my condition.  I know that while I wear my scars and medical supplies as badges of courage, plenty of people view them in a much more negative light.  That was a lesson I learned at an early age.  I still remember how my heart hurt when I returned to my first-grade classroom after a week in hospital and the boy at the desk next to mine loudly asked the teacher if he could move to a seat "away from the sickness."  And I still feel the stares and whispers when I go to the pool and the bruises on my stomach and thighs are exposed, along with the glucose monitor that sits on my skin for all to see.  These things weigh me down.

And as all of those thoughts swirled around in my mind with increasing frequency and intensity these past several weeks, I found myself faced with news that served to exacerbate them tenfold: after months of an endless battle with insurance, I was finally approved to start using a Tandem X2 insulin pump.

I was thrilled.  I am thrilled.  I've been on MDIs for 12 years, and while a pump certainly isn't easy or painless, I'm more than ready for a change.  But the same day the approval came through, I found myself staring at my Dexcom in the bathroom mirror and deeply, viscerally hating it.  Never before have I viewed that miraculous device as ugly, but now, that's the word that flashes in my mind whenever I see it.  So how will I handle being attached to another device, one that comes with a cannula and coils of tubing?

I never thought I'd be someone who struggled with being open about my condition.  So I was taken by surprise when that disgust - the same disgust I see on the faces of strangers in public - hit so intensely.  I found myself scared to tell my partner about my new device, and I still haven't found the courage to tell my friends, because it doesn't feel right asking them to accept and love a part of myself that I can't even manage to accept and love.  What happened to the kid who didn't care what the world thought?  When did I become someone who does my insulin in a bathroom stall at work?

The truth is, after more than a decade of living in a world that is so quick to judge people like me, confidence just doesn't come naturally anymore.  It takes a very real, conscious effort to gather enough courage to show off the parts of me that I've been taught to hide away.  And yes, that effort is exhausting - but it's also so important, and I'm working every day on finding the strength to accept the "ugly" sides of my condition.

So when my pump arrives next week, I'll wear it with as much pride as I can muster.  I know some days, confidence will be in short supply.  But I'll get through it!  I'll keep showing the world that my condition, all of it, can be beautiful.  And while I show them, maybe I'll show myself, too.