On Friday, at roughly two o’clock in the morning, I came to the realization that I hate the smell of insulin. It smells synthetic, like a laboratory creation. It is a reminder that my body has failed me. When I catch a whiff of insulin, it is a smell that I cannot escape. Perhaps that’s because when I smell it, I know something is wrong, and somehow that scent is required to linger until I’ve fixed the issue. Whatever the case, I feel it is important to note that on the eve of the seventeenth anniversary of my diagnosis with type one diabetes, I had a visceral reaction to the smell of the medicine I’d be dead without. And I hated it.
This year with type one has been unusually difficult for me. I’ve started thinking of myself as the parent of an errant teenager who knows, despite my most fervent desire and efforts, that my kid will never EFFING MOVE OUT OF THE HOUSE. So, as one does on the Internet, I’m going to write some vitriolic things fueled by the rage that comes with the knowledge that life isn’t fair and hope that it makes me feel a little bit better.
Type one is never easy and it never will be, no matter how many advances are made in finding a functional cure. That is something you don’t learn on day one. You don’t understand that this disease is nothing if not a constant testing of limits, a kind of Russian roulette with your body to see just how far you can push it, just how much you can control it after it tried to quit on you. And it is scary. There is no definitive number that equates a seizure from a low or acidosis from a high. There is no manual for figuring out how a high or a low impacts your character, your mood, or your ability to go to work each day and do a job without screwing it up. There is no way to teach someone how to be self-aware enough to realize that they aren’t acting like they would NORMALLY be acting… and then correct their behaviors so that they seem like their normal self. I had to answer a question on an online dating site once that more or less asked, “Are you competitive?” I didn’t realize it then, but my answer has to be an emphatic (pardon me) FUCK YES. I am in constant competition with a disease. And every day, I am required to refuse to lose. And it is exhausting. So, here is an airing of grievances. Thanks, Internet, for the indulgence.
- I changed up my pumping regimen this year. After three or so months, I started developing a rash where my pump sites were located. At first I thought I could fix it with alcohol prep, but it didn’t matter how clean the surface was, I’d scratch until I bled. I was burning through infusion sets (the device I use to deliver my insulin), which caused myriad issues when I’d request refills too soon. (More on this in a later grievance.) My endocrinologist recommended I use a cortisone bandaid, then insert the infusion set through the bandaid. This seemed outrageous to me (and I love my endocrinologist). I called the supplier to attempt to switch back to the old adhesive (cloth, not the clear plastic that was giving me issues) and they “didn’t carry” that particular infusion set. This was happening for months. I had welts all over my stomach, lower abdomen, and hips. And I was miserable. It took two rounds of resupply before I finally had a come to Jesus talk with a sales representative who confirmed I could use the infusion sets I had used with my previous pump.
- I have to call three different companies to refill my medical supplies. One for insulin, one for pump supplies, one for continuous glucose monitor (CGM) supplies. Most conversations end with me feeling like they’re doing me a favor so that I can live, rather than them providing a service to someone who is paying a lot of money for things, despite having what I consider decent insurance coverage.
- I’m not yet thirty and I’m having extensive conversations with my friends in the medical profession (who also have type one) about whether or not I should be on statins and ace inhibitors. The verdict is yes, I should be.
- Trying to date while wearing tubing and a machine and another machine that noticeably protrudes from your tum tum. It isn’t quirky or cute awkward. It straight up freaks dudes out.
- The fact that even after Banbar, FDA has to put out publications like this. The fact that “Dr. Mell White” has paid to have her horrible “diabetes destroyer” that “reduces insulien resistance” promoted in my Twitter feed (see photo below). The fact that people believe that you can “cure” type 2. The fact that people don’t understand that there is a difference between type 1 and type 2. The fact that it bothers me that people don’t understand there is a difference between type 1 and type 2.
- The fact that the kink featured in the photo below still happens sometimes, and I stay up until four in the morning to make sure my blood sugar returns to its proper place (and still make it to work in time for an 8:00 meeting).
- I get even angrier about all of the above when I think about the fact that I have resources to deal with these things. I’m not poor. I have friends who can refer me to physicians and talk to me about courses of treatment. I have decent health coverage that affords me fancy new technologies like CGM. I speak English, I go to see specialists. I know how to use that tone of voice that indicates I should not be fucked with. And it’s still really hard. From where I’m standing, that seems like more of the exception than the rule. And that makes me really angry.
This year has also seen a few type one tragedies that, maybe, are just making more irritable than usual. A friend’s son, who is less than two, was diagnosed right around Thanksgiving. At Christmas time, a college friend died at 28. She had type one. I don’t know if her death was diabetes related, but in my mind, it was. In my mind, this beautiful young person, who lived with such a light, just got too tired. So maybe I’m angry and scared of my own mortality and I see it more when it makes itself apparent in the lives of people I love and know to be innocent and good. And maybe I’m just tired, too, and I don’t really know what that means.
This is not a peppy post. But it’s real. I’ll be okay, I just have a diseased teenager in my life and I’m trying to figure out how to navigate that.