Just Breathe

Just breathe…a mantra easier said than done when each breath flows in and out smoothly, instead of in ragged, wheezing gasps.

I’m no stranger to asthma. I dealt with it throughout most of my childhood. The details are blurry on when I experienced my first asthma attack, but all I know is that it left me rasping and feeling (on top of sounding) like the cute little penguin from the Toy Story series, Wheezy.

The only thing that would keep my asthma symptoms at bay was nebulizer treatments. The nebulizer is one of those loud machines that generates vapors – albuterol medicine – that must be breathed in through a mouthpiece. I hated these treatments because they left me feeling shaky for a long time afterward and often caused high blood sugar, but it was much easier and more comfortable to breathe after them…so they were worth it.

Throughout my teenage and most of my young adult years, though, asthma slowly became a distant memory. I experienced it less frequently until it stopped altogether, and suddenly diabetes was the only thing I had to worry about. And I was glad for it.

But then…let’s fast-forward to the week leading up to Christmas. I was busy. I mean, wicked busy. I was running all over the place, jetting from one party to another, interacting with all sorts of people who were bringing germs from all over to each of these merry gatherings. I was getting run down and sleeping less due to the holiday celebrations, so really, it shouldn’t have surprised me when I felt the first tinge of a sort throat in church on Christmas Eve. But when that sore throat was soon followed by a tight chest and a whistling sound whenever I exhaled, I was taken aback – not to mention straight-up annoyed.

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The rescue inhaler that’s been my best buddy the last couple of weeks.

I treated the initial waves of wheeziness with my rescue inhaler. But when that started to be less effective over shorter and shorter lengths of time, I knew I needed to get in touch with my primary care doctor. So I did, and I met with a nurse practitioner who diagnosed me with something new: reactive airway disease. I left the office feeling shell-shocked over a new diagnosis that would mean that I would have to use a different kind of inhaler twice daily for the next two weeks.

I was afraid to start it for many reasons, but the two biggest ones were 1) I was nervous it would make my blood sugar go up and 2) it can cause thrush (also known as an oral yeast infection, which sounds positively nightmarish) if I forget to rinse my mouth out with water after each dose.

Overall, though, it doesn’t sound like too big of a deal, right? If it helps my breathing, it shouldn’t be an issue to add this inhaler into my morning and evening routines.

Silly old me, however, did turn this into a big deal. I wasted far too much time fretting over this inhaler and saying “woe is me” for having to deal with yet another medication that was extremely expensive (I paid $56.83 for the darn thing…I have no idea what the total would have been if I was uninsured).

My logical self knows that this won’t do any good. So now, I’m getting my act together and just rolling with the punches.

I’m trying to gently remind myself…just breathe.

 

My Diabetes Turned Me Into a Control Freak

I am the type of person who always has “a plan”.

On second thought, that may be an understatement. I’m the type of person who always NEEDS TO HAVE a plan.

I always need to know the date, time, location, and what to expect during my length of stay when it comes to anything in life: a night out with friends, a quick trip to the grocery store, a vacation.

I always need to know what the plan is for dinner…and breakfast, and lunch, and snacks…every single day.

I always need to know what my options are should a plan not go according to my carefully thought out course of action; in other words, I take a great deal of comfort in having a Plan B…and a Plan C, Plan D…

The bottom line is, I think that my obsession with planning has a lot to do with how my diabetes has turned me into an absolute control freak over the years.

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My diabetes is the reason why, for much of my life, I’ve felt like I needed to plan out everything that I do.

Let me explain: Try as I might, I will never have complete control over my diabetes. This has been a difficult reality for me to accept, but it’s the truth, and I know that nobody can ever truly control diabetes. It has a mind of its own sometimes, and the best that we can do is react accordingly to the curve balls it throws.

Since I won’t ever have control over this major, major thing in my life, I think this has triggered me to feel compelled to control everything else in my life…even things beyond my control. And yes, it’s as maddening as it sounds.

It affects myself and everyone close to me.

It is the reason why I worry so much and waste a lot of brain space on things that I shouldn’t.

And it’s something that, though I’ve come to terms with it, I would like to change because the rational part of me knows that it’s not healthy to maintain the unrealistic expectation that I can control everything that happens in my life. If I can accept things like random pod failures and unexplained high blood sugars, then shouldn’t I also be able to accept that other random things can just happen in life, such as a pipe bursting in my apartment or the car I’m driving getting a sudden flat tire?

The more rigid version of myself that existed a year ago would’ve absolutely panicked and melted down in the face of those scenarios, but the type of person I’m trying to be now actually recently handled both of those unpredictable events with a lot more coolness and calmness than I ever could have imagined.

So I guess what I’m getting at here, in a very long-winded way, is that my diabetes may have turned me into an obsessive planner control freak…but I’m just beginning to discover my ability to let go a little more and not let my diabetes affect my thinking and reactions to many other things that happen in life.

Endo Appointment Anxiety

I’m feeling anxious about my appointment with my endocrinologist tomorrow.

I don’t know why. I like my doctor very much: She’s always encouraging, pleasant, and helpful. The only thing I’d change about our appointments is to slow them down a bit; sometimes, she whips through them so quickly that I forget to ask her the questions floating around in the back of my mind.

Could it be that I’m worried about my A1c test? Possibly. I don’t know whether my A1c has gone up or down in the last three months. I have stretches of time in which my blood sugar behaves the way I want it to, but I also experience clusters of days here and there of complete diabetes chaos. In the last month, for instance, there were a few too many circumstances in which my blood sugar was above 300 mg/dL. Each time, I’d correct the high, only to either experience 1) a sudden drop resulting in a low or 2) several hours of prolonged high blood sugar because it was taking the insulin a long time to take effect.

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I love that there are posters about “understanding” diabetes on the wall – it’s too complex to break down into a few bullet points.

Now that I’m thinking about it, maybe those scattered, wicked-high blood sugars are the reason why I’m anxious about this appointment. I know that my doctor will probably ask me about them, and I’m going to have to admit to her that a combination of emotional eating, lack of carb counting, and general carelessness resulted in those highs. I know that she won’t judge me, but…I can’t help but judge myself for causing the blood sugar swings. The rational part of me is aware that it’s unhealthy to blame myself for occasional slip-ups, but the goodie-two-shoes, Miss “Perfect Diabetes” part of me is shaking her head in shame and disappointment.

If nothing else, this is a prime example of how diabetes can be an absolute (warning: foul language following) mind fuck.

What it Feels Like to Have Low Blood Sugar

Diabetes evokes curiosity for those who are not familiar with it. I’ve been asked many questions over the years – can you eat sweets, does it hurt when you give yourself shots, do you have to protect your pump from water, just to name a few – all relatively easy-to-answer, yes-or-no questions. But every now and then, someone will ask harder questions. And one that I’ve struggled to answer in a succinct manner is: What does it feel like to have low blood sugar?

There isn’t really a simple answer. I guess my textbook response is to rattle off a list of common hypoglycemic symptoms: shakiness, dizziness, sweating, slurred speech, weakness. But I know that other PWD experience slightly different symptoms, such as feeling cold instead of sweaty, or drastic changes in personality. And there are even some PWD who don’t experience any symptoms due to hypoglycemia unawareness.

So how exactly do I response to a question like that, one that’s more loaded than it appears?

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A graphical representation of a sudden low – I guarantee I was not feeling great when this one hit.

I could tell the asker to imagine feeling simultaneously ravenous and disoriented. I could tell them to picture walking into the kitchen and feeling like inhaling the entire contents of the pantry – that’s how intensely your body craves sugar.

I could tell them to think about what it’s like to wake up in the middle of the night drenched in sweat. It might seem like a reaction to a nightmare, but it’s the body trying to convey a message that is, by some miracle, supposed to be grasped by someone who was just trying to get a solid night’s sleep.

I could tell them to envision feeling like energy is sapped out of every pore in the body abruptly, with little warning.

I could tell them that sometimes, it results in pure panic, particularly when no fast-acting carbohydrates are on hand or when no one is around to help you.

I could tell them that low blood sugar is one of the biggest sources of anxiety for many PWD, that it causes a deeply rooted fear. That it can sometimes lead to a PWD making unhealthy choices just to avoid a low from happening in the first place.

I could say all of this to anyone who asked me this question – and I still don’t think it would completely convey what it’s like to have low blood sugar.

How would you describe it to someone asking you about it? Would you use the terse medical explanation, or would you try to talk about how it really feels?

Leave your responses in the comments – I’d like to know how you handle this. And if you thought this was an interesting post, let me know. I’m thinking of doing a series about how I answer the more complicated diabetes-related questions I’m asked.

A Discussion about T1D, Mental Health, and Body Image with CDN

Last night, the College Diabetes Network hosted a Facebook Live that brought together a panel of young adults with T1D, psychologists, and special guests who discussed the mental health issues associated with diabetes. The conversation lasted just over an hour and a half, with viewers chiming in throughout to get their questions answered by the panel.

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Missed the Facebook Live? Visit the College Diabetes Network’s Facebook page to watch the whole video.

The topics covered by the panel included depression, burnout, anxiety, ADHD, and disordered eating vs. eating disorders. Incredible stories, insights, and tidbits of advice were shared as the panelists opened up to viewers and honestly answered the questions that were asked.

Several responses from the panel stood out to me, and I’d like to share what was said and why it affected me…

On T1D as a psychologically and behaviorally demanding stress in your life:

The idea of perfectionism…and you have to be perfect at everything, and transitioning into having to go into college, get good grades, do well, and plan for a successful career…and having diabetes also be a factor is overwhelming and can cause people to go into a state of ignoring it. -Karly

I related to this because I’ve always tried to be a perfectionist, in all facets of my life. Karly’s take on diabetes being an unwanted, demanding, and additional stress factor resonated with me because I also view it as just another thing in life that I have to try to handle perfectly – which, of course, is impossible when it comes to a chronic condition with a mind of its own.

On the concept of lowering expectations and setting goals:

It’s less about lowering expectations and more about establishing expectations that are real…Also, the way that diabetes is taught, I personally think is absolutely incorrect. Patients and loved ones are taught that blood glucose can be controlled…and that it responds to an algebra equation…what your insulin to carb ratio and what your sensitivity factor is can land you directly into the target, but what we know is the target is a zone, not a bull’s eye. And we don’t teach it that way. -Ann

I loved how Ann phrased that part I put in bold – I grew up thinking that I had to have my blood sugars right on the money at all times. If it was higher or lower than say, 120, I was failing (this ties in with that perfectionist attitude I was just talking about). But to hear her acknowledge that this way of thinking shouldn’t be taught was validating to me.

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On the fear and anxiety of losing control from low blood sugar:

During a workout…whenever I was making progress, it seemed like something just pulled me right back…because of that, I started training high, purposely. I would start training in the high 100s, to almost the 200s, which is not good at all…I had to become conscious of that…because of my fear of lows [and feeling like I’m about to die]…I intentionally made myself high. -Jiggy

Working out has always been a challenge for me, and my fear of lows during a workout is pretty intense. To hear that Jiggy responds to that in the exact same way as me made me feel not so alone.

On accepting mistakes and that you’re not perfect:

Remember that you were never meant to perform this function. Your body was meant to perform this function. You are trying to take over from something that your body was supposed to do for you…remember you’re a human being [who is] being asked to do something you weren’t supposed to do. -Will

Yes, yes, YES. Will could not have said it better. It’s important to remind yourself that it’s not easy to take over a job that your body is supposed to do for you automatically as a biological function. You just need to try to do the best that you can, and not beat yourself up when you don’t always get desirable results.

A major thank you to William Jennette, Karly Kroeten, Jiggy Yoon, Aaron Sherman, Heather Levy, Ellen O’Donnell, Ann Goebel-Fabbri, and Quinn Nystrom for volunteering their time to get together for this Facebook Live, as well as for being vulnerable for perfect strangers on the Internet. I know it’s not easy to share personal stories, but the integrity and eloquence displayed by each panelist made for a powerful live video.

The College Diabetes Network’s website contains a variety of information on how you or a loved one can cope with the mental health challenges of diabetes. Visit their page to access materials that help explain touchy topics, as well as additional resources.