11
May

Another endocrinologist visit

My recent Endo appointment was a strange one. I grew up with disappointment and lectures every 4 months from my childhood endocrinologist, so I'm no stranger to the guilt and frustration that often follows one of these appointments. This time around was a bit different though.

When I visited the hospital a few weeks ago to have blood drawn, I had to renew my hospital card. The woman creating a new card for me asked if I wanted to sign up for My Chart, the Web service that allows patients to see lab results and clinic notes for all hospital services. Of course I signed up for the service, so a few days later I logged in and was able to see my lab results prior to actually seeing my doctor.

This a1c was better that my last few have been - significantly better. I hit a record for new lowest a1c! Needless to say, I went to that appointment feeling pretty pleased. It was unexpected, but certainly not unwelcome news.

At least -- not to me. Dr. A was less than impressed.

Maybe she was having an off day. Maybe she was seriously displeased and her demeanor was just her way of trying to remain restrained as she spoke to me about the dangers of having the kinds of lows I've been seeing lately. Either way, we reviewed my data and agreed that this lower a1c was likely the result of overnight lows that often went untreated.

She made a number of changes and sent me on my way. I left that appointment feeling as though I had been chastised for not acting sooner. She's not *wrong,* per se, but UGH. This feeling is deeply unsettling. Even now, a few weeks later, I feel like I've failed. I feel like treating mild lows with temp basals is inviting in a worse low (which is exactly what she was getting at), and I've been reprimanded and sent on my way to think about what I've done.

I spent more than a decade learning from my childhood endocrinologist the many ways I could disappoint a doctor, usually using the twin powers of disinterest and lack of effort. Matching that disappointment, but swapping the cause out for burnout and lack of action, is a strange and discouraging place to be. ESPECIALLY when this time around, I've actually been trying as hard as I can for better #s.

7
Aug

Family and diabetes/the frustration of having no impact

My heart is aching.

 

Right now I've got so much to talk about. There is so much I want to share and discuss. I met a PWD and his parents in my area when they came to my rescue the night before I left for a vacation. I've got a technique for extending the life of my sensors and recharging my transmitter without accidentally yanking the whole thing out (which I think is pretty cool!). I got in touch with the Ontario ADP office and asked the folks there to send me the documentation that was used to justify their decision not to cover CGMs and sensors along with insulin pumps, and I've been immersing myself in the research and papers that they provided.

 

Lately, though, I've been hung up on a conversation that I had last weekend.

 

Let me rewind a bit: Last weekend Boyfriend and I travelled about 6hrs south of home to attend my cousin's wedding. The wedding itself was absolutely beautiful, the bride; stunning, the ceremony; flawless. The reception and party following the ceremony? It was one heck of a party!  The only part of the evening that was in any way unpleasant was a conversation I had with my Uncle S (the bride's father). Uncle S has had diabetes for a few years, and manages it with Metformin and diet. As usual, when we get together we shoot the shit about diabetes, mental health, public and family support, etc.

 

This time around our conversation was a little different. My aunt and uncle are going through some difficulties and are currently separated. They spent a long time trying to work it out, but it looks like this separation is going to end in divorce. I hate seeing how painful it's been for both my aunt and uncle as well as my cousins, but I know sometimes there is only so much you can do.

 

This separation and impending divorce has taken quite a toll on my uncle. Last time I saw him (July of 2014) he was using e-cigs as a method of helping him quit smoking. He told me how the e-cigs were doing wonders for him and were helping him to quit the habit. Last weekend, though, when we spoke it was out on the patio at the wedding venue, as he had resumed smoking.

When I asked how his diabetes was doing, he said that his cholesterol and a1c levels were excellent. He told me that last time he visited his dr's office those numbers were great, and in addition to that, he had recently lost 40 lbs (likely due to skipping meals during the day and eating better/healthier meals at night, combined with the stress and challenges that accompany the end of a marriage). Knowing that a decent a1c isn't exactly the quintessential measure of diabetes care, I asked how his numbers were throughout the day. His response, that he didn't know as he rarely checked his sugars at all, blew me away.

 

Also, keep in mind: we were at a wedding. I had enjoyed some wine with with (and after) (and before!) dinner, so while I was equally (or more) talkative than usual, I was nowhere near my normal articulate and well-read self when I blew up and gave him a lengthy, repetitive, somewhat irrational but mostly still accurate lecture on the importance of testing his BG throughout the day. He tolerated my well-meaning but still mostly critical tirade, but by the end of this conversation I was positive that nothing I said had changed his mind about his method of treatment.

It scares me to think of how easily complications can set in. It scares me even more to think that if he ends up with any serious, debilitating complications, he won't have my aunt close by to support him any more. I know there's no sense in worrying about the future, but it feels hard not to worry when a specific version of the future seems guaranteed.

So that's what's on my mind these days. Makes it a bit tough to focus on the more exciting stuff (see above; the new PWD friends or the ADP research).

2
Jun

When health stuff is all I've got going on

Sometimes I feel like diabetes doesn't leave me with very much left to work with. When I ask someone how their weekend went and in return they ask me the same, I sometimes struggle to come up with a description for my days that doesn't revolve around diabetes. I have entire days where all I can remember is the thirsty, bloaty, exhaustion-filled highs that wouldn't come down or the trembling, sweaty lows that shake me to my core.

 

I know that life isn't all about taking care of diabetes. Health and disease management should only be one part of a complete and balanced life. It makes me wonder, at times, what has to give in order to find that balance. Do you give up on tight BG control in order to gain back some flexibility in life? Or give up some of life in order to achieve a better A1C? The bums-me-out-that-it's-one-or-the-other thing aside, I feel right now as though I'm erring on the side of better BGs, and as a consequence I'm missing out on other things.

 

I need to figure out how to fix that. Until I get to that, you can find me working on some solid non-diabetes-related lies to tell people when they ask about my weekends.

 

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