“In July 2024, a 33-year-old woman with type 1 diabetes was boating on a hot day when her insulin delivery device slipped off. By the time she was able to exit the river, she was clearly ill, and an ambulance was called. The hospital was at capacity. Lying in the hallway, she was treated with fluids but not insulin, despite her boyfriend repeatedly telling the staff she had diabetes. She was released while still vomiting. The next morning, her boyfriend found her dead.”

Above is the opening to an article written by my friend, journalist, fellow type 1 and diabetes advocate, Miriam Tucker. It appears in the August 16th edition of Medscape, “What Every Provider Needs to Know About Type 1 Diabetes.” The article goes on to highlight other cases and situations where lack of knowledge about type 1 diabetes can create life-threatening situations.

Recently I’ve had a number of tests to check the health of my heart. I’ve had high LDL the past few years as do my parents and brother. My clean, low carb diet and exercise routine of walking every day 45-60 minutes and two weight training gyms classes a week has not improved my LDL. It is genetic, not dietary, as for many other people.

The last procedure I had a week ago was an angiogram. Because I couldn’t eat after 8:30 am, my blood sugar was trending low all day. The procedure that was suppose to happen at 1 pm didn’t happen until 4 pm. Three times during those hours I’d had to ask for a few sips of juice.

In the room where they do the angiogram, I had to surrender my phone, where I was hawkishly watching my CGM numbers. When the procedure began I was at 69 mg/dl. I let all the medical people around me know and they put the phone where we would be able to hear the alarm. I trusted stress would soon kick in and kick me up.

Like in my last post about advocating for myself, I believe we owe it to ourselves, our fellow type 1s and our health professionals, who in their heart want to help us, to educate. Unless a provider specializes in endocrinology, it’s unlikely they will have received much, if any, education about type 1 diabetes.

You can be that education. If you’re comfortable, use your interactions with health professionals to share what living with T1D really is. How else are they going to learn?

I love educating others, and not merely in a formal way like this blog and through my presentations, books and articles. I relish seeing another CGM wearer and always make contact. A secret thrill is taking an insulin injection in the middle seat of an airplane. I’m just waiting for one of my seat mates to ask me what the heck I’m doing. Much to my disappointment, they hardly notice.

Still, when I can, I do what I can to help others understand the complexities of this most complex, little understood disease. And I’ve told the husband numerous times if I’m ever in the hospital he needs eyes on me like a hawk so what happened to that 33 year old woman above does not happen again.

I don’t know if this merits a top spot because it’s so ridiculous, or because it just happened, it’s on my mind. and I haven’t bothered to think what the other 9 ridiculous requests could be. I know they exist though.

Yesterday I had my twice yearly visit with my endocrinologist, whom I love. The assistant first greets me to get my weight, blood pressure, download my CGM data and, get ready for it, blood sugar.

I looked at her for a solid twenty seconds and said, “What do you need to prick my finger for, I’m wearing a CGM?” To which she replied, “We need a value in real time.” Huh? I gave her another penetrating stare and said, “No, I won’t do it.” You should know, as background, I had two procedures in the past ten days that required not only taking my blood from a major artery, they missed the first five times, but poking me as well for IVs and whatnot. I had reached my limit as a pin cushion.

“No,” I repeated. “You’re not going to take my blood.” I wasn’t rude but I was firm. I didn’t know what the consequence of my refusal would be, nor did I give it any thought. I just knew I had no more tolerance for needles, let alone the insanity of the request when I’m sitting there wearing a CGM.

“Okay,” she said quite mildly, “I’ll let the doctor know.” Whether she did or not I don’t know, I forgot all about it. My endo never raised the point, and I know had he, he would have agreed with me how ridiculous this situation was.

I just want you to know, when you’re in consultation with your physicians, you have the right to say what you think and feel. You are half the equation in any interaction with a health professional. I’m not advocating rebelliousness for its own sake but if you have a viewpoint that should be considered don’t keep it to yourself. That’s how we start tearing down the walls of hierarchy and coming closer to truly working together.

Last week I needed a blood draw and an IV infusion for a lab test. I was greeted by a friendly, masked lab technician to draw my blood and insert the needle to set up the IV. As soon as I sat down I told him, “Use my left arm, they always have trouble getting blood out of my right arm.” Then he proceeded to stick the needle in my right arm. I looked at him quizzically while he poked around. Three times before mumbling something which I assume was that he couldn’t find a good vein. Duh.

Same thing then happened as he twice tried sticking a needle in my left arm. Finally, he left the room and brought in the nurse who immediately got the needle in. The photo above shows the bruise from one of the lab technician’s attempt. What strikes me beyond the tech’s incompetence and unwillingness to ask for help sooner, is my own lack of insistence that he try my left arm first and that he get someone else after his first failed attempt. I know I have small or recessed veins and this is often difficult.

Of course there’s the assumption that he’s the expert. That I want to be kind and rally him on thinking, ‘go ahead, stick me again, you’ll get it.” Meanwhile I’m scanning my head on alert for fainting, which I have done before going through this process. The only good news I can take away is I will not let this happen again. Advocating for one’s self isn’t just contained to making sure you get a necessary procedure. Is stating what you know about your own body with as much confidence as we give others to poke and prod it. I encourage you to do the same.