A really awesome thing

Full disclosure: I have been completely chicken shit about posting this; in fact, I’ve put off posting it for about 6 months. Because we’ve made a Big Decision, and the thing about Big Decisions is that everyone tends to feel like they have the right to an opinion on them. In researching this Big Decision we have already felt a bit of resistance from people who don’t think this decision is right for us. And in talking to others who have also made this same decision for themselves, we have reason to believe that, as the decision gets underway, more opinions will be forthcoming. More people announcing that, because the decision may not be right for them, were they in our position, it can’t possibly be right for us.

But I guess the thing is that life is best lived for oneself, and maybe also ones closest family, and my family and I are pretty stoked about this.

I’m getting a service dog.

Phew. OK, now that that’s out of the way, let me go back to the beginning and explain the origins of this humongous decision:

A few months after I was diagnosed, I learned about Diabetes Service Dogs – absolutely amazing dogs who are trained to smell changes in your blood sugar and alert you when it goes out of range. Immediately this felt like something that could be a good fit for me: firstly, because Stefan and I are huge dog people, and have been discussing getting a dog together for as long as we’ve been together, and secondly, because, you know: MORE HELP in the impossible challenge that is diabetes.

Of course, a million potential issues came to light: cost of getting the dog, finding a provider that we trusted, the logistics of owning a dog in NYC, cost of keeping the dog, the fact that this would be a huge life change, what it would mean to walk around with a “service dog” (making my mostly invisible disability pretty visible), and, you know, fear that people would think I was being ridiculous, indulgent, and unnecessary. Because I have a TON of great technology on my side – Dexcom, pumps, meters. What could a dog possibly add to the mix?

Given all this, we put the idea of a dog on the back burner. Diabetes was still incredibly new and there was so much to learn and so much to adjust to already; it felt like enough of an accomplishment taking care of myself, let alone another creature.

So life progressed. Diabetes stopped being a Brand New, Really Hard Thing and became more of a Chronic, Really Hard thing. A lot of what was initially hard about diabetes – not understanding it, not understanding how to use the technology, having no earthly idea how my body would react to different foods and activities, stopped being quite as much of an issue.

But in the meantime, a lot of the things that started out really hard about diabetes have not gotten any easier. The frustration, the impotence, and, most importantly, the fear. Fear of lows, fear of complications, fear of death, etc etc.

As my diabetes grew out of its infancy and landed in its adolescence, one very persistent problem asserted itself: the problem of nighttime.

I can be pretty OK at managing diabetes when conscious. With some exceptions, I’m on top of it; when I’m not on top of it, I tend to know that I’m not on top of it (and am wracked by the guilt, but that’s another story…), and I “know what I need to do” to get back on top of it.

Unconscious, however, diabetes has a pretty big advantage over me.

When I’m sleeping, I can’t (usually) feel my blood sugar change. And that is really really scary. I’m sure at some point already on this blog I’ve rattled off my least favorite statistic, that something like 10% of type 1s die in bed (it’s called “dead in bed” syndrome, depressingly enough)… they fall asleep and their blood sugar goes too low and they never wake up.

I really, really don’t want that to happen. So far, I have one incredible tool in my unending battle with nighttime: the Dexcom. That little bugger alarms when it senses my blood sugar is dropping too low or spiking too high overnight. That’s been incredibly lifesaving, and, if you recall from when I had to go 2 nights without it, it’s pretty much become impossible to live without.

But of course, no technology is flawless. And, like any alarm clock, both Stefan and I have learned to sleep through the Dexcom. Literally, in my high- or low-addled brain, I reach out to my nightstand and press a button to acknowledge I’ve heard the alarm, effectively “snoozing” it. Plus, Dexcom, while a lifesaving and amazing product, is not without error: sensors fail, or you roll over while asleep and block the signal, or it just doesn’t catch a slide that’s too slow or too fast for it. Or it catches my numbers about 10 minutes later than I want it to.

Last month, I had what I was pretty sure was the worst low of my life. Lows have a lot of different symptoms for me – it seems to depend on a lot of factors; things like how low I am, how fast my blood sugar has been moving, how long I’ve been low, what my blood sugar was doing before it was low, etc etc etc. Sometimes I feel shaky, sometimes sweaty, sometimes disoriented or aggravated, sometimes weak or feverish, sometimes I develop a pounding headache, sometimes I develop weird psychological dissociation, and all times I just feel like shit.

This low, however, brought with it a brand new symptom, one I’ve never felt before. I woke up, suddenly, in the middle of the night. I wasn’t sure where I was or who I was but I felt one thing with absolute, piercing clarity: I was going to die.

I’m not sure if this is a recognized symptom of a low: “sureness one is going to die” is not something I’ve read in any pamphlet about hypoglycemia, but I can’t explain it in any other way. My body felt like it weighed 1000 pounds, I couldn’t move, I was burning hot and freezing cold at the same time, sweating profusely, my heart felt like it was beating on absolute overdrive, but more than anything else, I was entirely sure I was about to die. I started to scream, but I actually didn’t because then I realized I was screaming in my head, which is a deeply messed up thing to realize.

In retrospect, I don’t know if I felt like I was going to die because I was going to die, or because the low was making me think I was going to die, but all I can say is that when I miraculously realized a few moments later that it was a low and drank not one but two of my “big ass 20 g of carb” juice boxes, waited 5 or 10 minutes, and tested, my blood sugar was in the 20s. That’s after at least 5, maybe 10 minutes with 40 g of carbohydrate on board. Meaning, it’s not outside of the realm of possibility that when I woke up I in fact was going to die.

PS – my Dexcom had lost signal. About 15 minutes after treating it came back online to announce I was LOW.

I’m just not comfortable with Dexcom being my only nighttime ally. I’ve had too many unstable nights in the past where my blood sugar spikes or crashes and I just-dont-catch-it. Waking up the morning after a night of blood sugar roller-coastering of feels a bit like the worst hangover ever. Plus, the knowledge that you may have been weakening your heart and shortening your life or inviting complications by spending too much time “out of range” doesn’t help either.

So when we started to hear about how the dog could potentially wake me up overnight if it smelled something off, that really got our attention. About how it can often catch slows just when you’re starting to slide, and it does so in “real time,” not with Dexcom’s 10-15 minute delay, we were very interested. And once or twice, “the morning after” a really bad night, I allowed myself to fantasize about how the night may have gone differently were there a dog in the picture.

Just as one more layer of security.

Diabetes is scary and awful and difficult, and I want as many allies as I can. I have human allies, I have technological allies…the thought of adding a canine ally gradually, over the past few years, became more and more appealing.

So we started doing some research. “Some” became hours of research, which became dozens of hours which became hundreds. We looked up how much these dogs cost. We reached out to private trainers and companies that train dogs for you. I called, texted, and emailed probably 10-12 people who had service dogs. I spoke with a friend who was in the process of getting one (like…a million times.)

Everyone I spoke to that has a diabetes service dog couldn’t speak highly enough about them. Everyone said they’d do it again in a heartbeat, that the dog was a lifesaver, that it was the best decision they could have made.

One thing that gave me pause though, was this: I asked a lot of people who had dogs if there was anything that surprised them about life with the dog; anything they hadn’t expected.

At least five gave me the same answer: they were surprised at how awful people were to them.

As in: they were surprised that so many people gave them such crap about having a service dog. Strangers. They said people sometimes openly come up to them on the street and tell them “they didn’t look disabled” or accuse them of falsely getting a service dog.

It was an upsetting thing to hear, and for a while, it was enough to keep me from pulling the proverbial trigger on the dog. I absolutely **hate** the thought that anyone could think I’m doing this to game the system, to get a dog I’m “allowed” to take wherever I want.

And then one day I was having a conversation with Stefan about it and he said something that really stuck with me. He said, “Well, I’d invite those people to spend 1 night as us.”

He is, of course, correct. I can count on one hand the number of times I’ve slept fully through the night since getting diabetes. (That’s less than 5 in almost 4 years, for those of you who are counting.) I should fully shift to the “who gives a shit” train of thought with all this stuff. Stefan and I need to make the best decisions we can given our needs and desires. And literally no one else in the universe has access to those except us. If we think this is a worthwhile investment, we should make it.

And I guess when it comes to my health, I’m going to be selfish and say that if there’s a way for a dog to give me more comfort and security when it comes to the very scary prospect of nighttime with diabetes, why not do it?

One night I was in the apartment alone when my Dexcom alerted that I was low. It said 72 and falling – but not the straight down arrow, the sideways-down arrow, which implies that you’re falling slowly. I didn’t feel low at all, so I wasn’t too worried about it, and finished up plucking my eyebrows. When I was done, I went to test.

My blood sugar was 24.

First I assumed it was a mistake, because I didn’t feel low, and then I tested again and was 26, and then I tested again and was 24, and I kept staring at the number just not understanding what it even was. Because I didn’t feel low! Then, I called Stefan on the phone, and started babbling—actually babbling—about literal nonsense and apparently he interrupted me because he was alarmed because I wasn’t making any sense and when he did I burst into tears and hung up on him and sat there for at least 3 minutes, like, sobbing, like, fell over on the couch and was wracked by full body sobs for no reason I could possibly understand.

^ Another new low symptom that’s never happened before. Once again, I’ll say it: the Dexcom is absolutely essential but it really messes up sometimes, you guys.

So to the people who have already implied that our decision to get the dog is unnecessary, that the technology is enough – I’d invite you to spend that night in my head. Or the “going to die” night. I can’t describe it; I’ve tried for the past four years and I can’t describe it (and I’m a writer!!).

The absolute terror of losing yourself. It’s like being abducted, or possessed. The sweet relief when you come back. The knowledge that you put your partner through something horrifying and you didn’t even know you were doing it.

There was a lot to it, of course. We had to research providers and find one we felt comfortable with, then we had to put down a deposit, and then we had to wait for three months on their “waitlist” and finally, finally they found us a dog and he’s currently in training to my specific scent at a million different blood sugar levels and also he lives in Las Vegas so I flew out there over Labor Day to confirm that I’m not allergic to him and meet him and I gotta tell ya: he’s perfect.

Meet Mickey (!!!) : coming to NYC (!!!) in hopefully (!!!) about a month!

SO MUCH more to come on the process, the logistics, the challenges and triumphs, and, of course, his arrival.

(ps he’s gotten way bigger since this pic was taken in August!)