I had a great appointment with my endocrinologist this morning. My numbers are all good. My long-term blood sugar measurement is the second lowest it’s been in my whole life. One of my kidney function measurements dropped, but because the calculation changed, not because I am doing worse. (They used to do separate calculations for African Americans, which is stupid. African American kidneys work, or don’t work, the same as everybody else’s.) But at the end of the appointment, she did drop that she would stop seeing patients sometime between this December and next July. She will only be teaching after that.

This is a circumstance that every chronic patient who has found the right doctor dreads

I haven’t talked about my weight issues lately, probably because I’m not where I want to be. Why talk about it until there’s something positive to say, right?

I have been nutritionally educated for 31 years. From the moment of my diabetes diagnosis, I started learning about healthy nutrition -- both foods and management techniques. With very few exceptions, there is not much more anyone can teach me. Now, following the healthier path is something different entirely. I have tried plans, apps, support services; I’ve even considered fat camps for grown-ups. None of these really work for me. It’s a habit I have of looking for sometimes expensive external crutches when what needs to be fixed is in my head. I’m acutely aware of what I need to do, and I just . . . don’t. I’ve even been successful in the past, so I also know that I am capable of achieving these particular goals.

Someone asked me once whether my diseases affected my daily life, implying that the diseases were add-ons to a life that looked like theirs. In a split second, my daily life flashed through my mind.

Uh, no.

I don’t actually remember what it felt like to wake up feeling healthy or at least what I assume healthy people feel like when they wake up.

Here are the things in my normal (as in no particular flare-ups or episodes) day that may not seem normal for others.

I finally got COVID. It was not what I expected.

Nearly all my friends and family have had it, whether triple or quadruple vaxxed, mask-wearers or not, about 90% of the people I know have had to muddle through. If I knew about it, I tried to check on them, and everyone said it was like a cold but 10 times worse. Mine was like a cold but 10 times easier.

Let me clarify.

I decided a long time ago that getting a cold or the flu was a price I was willing to pay to be close to the littles in my family. I would go visit and even if a kid just had a little sniffle, inevitably I would get sick. A couple of times, I would get home thinking I was fine only to stand up and think to myself, “That’s not right,” and end up with a 103-degree fever. Plus, there’s my annual October sickness. And while everybody else’s colds and flus last a few days, maybe a week at the most, mine usually run about three weeks.

I evaluated a weight loss program years ago that consisted of three stages: all food controlled (bought from the company), some food controlled (some bought from the company, some bought by patient), and no external food control (all food bought by the patient). The biggest critique I had after several months was the difference in levels of support between the fully controlled stage and the half-controlled stage. When all the decisions are made for you, it can be easy to start building healthy habits. But when the patient transitioned from stage one to stage two, it felt wobbly. There was less support offered. I told them that it should be the opposite. Once the person had to start making some decisions on their own, support should have increased until the person was comfortable with the challenges and possible bad choices that were now in their hands.

It’s the same with patients.

I haven’t talked about policy in a while, but my inbox is telling me it’s time.

I personally believe that patients belong at every table where decisionmakers are formulating new policy because how do you arrive at the best solutions without input from those who will be affected by it? But it can be hard to find ways in, let alone find someone to take you seriously. This is especially true of legislative policy folks, whether at the federal, state, or local levels. We can go to town halls, schedule a meeting with the people who represent us, and some of us even get to testify before a legislative committee.

These are all excellent opportunities, but limited in their scope, if less so in their potential impact. A patient story can open the door to sympathy or empathy, and it can be an excellent tool for policymakers to use in their efforts to sway others, especially if they remember that one patient story can be representative of millions.

But it’s not enough.

The switch from out of control to tight control was jarring. I spent four days at the Joslin Clinic in Boston, participating in their DoIt program, which was a one-stop reboot. In those four days, I had laser surgery on both eyes, got actual, effective treatment for the neuropathy in my legs, saw a psychologist with experience in pediatric diabetes (who would later help me find my psychologist of 20 years), and was referred to a doctor close to my college who had trained at Joslin and practiced their forward-looking techniques.

Oh, and my mom insisted on dragging me all over the city despite the pain in my legs because she didn’t want me losing any more mobility. Understandable since she was the one who fixed me after the meningitis, but still painful.

But it wasn’t all smooth sailing after that.

I really am a headcase sometimes. A couple of weeks ago, I mentioned that I needed to get a cortisone shot. I expressed then that I didn’t want to. I have been avoiding having one for years and years.

Why? Because I have hang-ups about pain.

It’s not what you think

I actually have a very high tolerance for pain. Some of the highlights are: having my neck forcibly un-paralyzed in one yank when my mom decided that we could deal with paralysis on the left side, but my neck (a neutral area, neither left nor right side) was a step too far; having an electromyography on dying nerves; and squeezing three sessions for my last retinopathy surgery into one.

Those were all necessary pains. Well, maybe not the electromyography. But they all had to happen for me to move forward. My issue is with unnecessary pain. If something painful is somehow voluntary, it’s not going to happen. (That’s why I will never get a tattoo.)

Fear is an instinct, a response to stimuli so ingrained that once you get away from the obvious (scary movies), you may not be able to discern a cause. You just feel it.

Not so in this case.

Somehow, I had gotten through my first, and still non-compliant, year of college with that trifecta of guilt, shame, and fear hanging around my neck.* I really shouldn’t have gone hundreds of miles away. I was unprepared to maintain my disease, even at the disastrous level I had been, away from my support system, and my academics had suffered, especially in the first semester. Toward the end of my freshman year, my feet started to hurt. By the time I accepted an invitation from a friend to join her and her family in North Carolina’s Outer Banks, I could barely walk.

Emotions. I’ve been thinking a lot about them lately: warm fuzzies from nieces and nephews who say they would rather stay home and play with me than go on vacation; bittersweet pride in a family member who just graduated and will be moving away, at least for a while; even a little bit of fear because I am going to have to have a cortisone shot (I don’t WANNA!) and I can’t think of a way to avoid it. I’ve heard they are painful, and I would rather just live with it, but this issue – trigger finger in my thumb – had become more than a nuisance, especially if I want to pick up the toddlers in my life.