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D-Blog Week: Share and Don’t Share

Last year, I double-timed it for D-Blog Week. This year, I’ll see what I can do.

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

When I go to any of my doctors, I feel like I turn into “super patient” and answer all questions precisely as if I’m being tested and just let the medicals lead the appointment. I’m married to a man with “white coat syndrome” so I know that’s not my issue, my issue is that I need to take control of my appointments. I did better at my last endocrinologist appointment, when I started a sentence with “while we’re talking, I need to ask you about travelling.”

I try to schedule my appointments online so it’s handy that I can type into the comments/reason for appointment box what I need to talk about and it ends up on my chart… whether or not that gets seen before I do, I don’t know.

Look at that! I’ve already strayed from the prompt!

What I wish they could see.

I wish they could see the life around my numbers. I mentioned about a year ago that I had an issue with a resident fixating on a string of low numbers and kept trying to change my basal programs to avoid them and somehow she didn’t understand they were outliers (because three days with lows in a row couldn’t be an outlier when you’re painting an entire house!). I explained over, and over, and over that those were not normal numbers. At that very point in time I wished I could snap her back to those days movie style so she could watch not only how active I was, how on top of treating those lows I was.

I wish that my healthcare team could see the things that I may not think to tell them about. I’m “new” at this whole living with diabetes thing and don’t always identify things they should know about. Although I doubt they should know about my sore neck from sleeping oddly, but I bet they should know about the tingly feeling in my hands that I only get in the mornings.

What I don’t want them to see. Read the rest of this entry

Stop Scolding

As a person with a large medical team (six right now), a lot of time and careful planning goes into getting the medical stuff that I need while still having this wonderful thing people like to call “a life.”

Lately, I’ve been fed up with being scolded by medical office staff and emails from my pharmacy. Today I just need to vent.

Last year, all of my medical visits hit at the same time and I was completely overwhelmed by everything. Because of that and our insurance all of my visits needed to be spaced out. I looked at the state of my health and decided to push my annual exam back a couple of months. When I scheduled my appointment, I let the nurse know that I would run out of my current prescription a couple of weeks before my appointment. She assured me that would be fine and to just call their refill line and explain that I need an additional month to hold to my appointment. I thanked her and that was that… Until yesterday.

Yesterday, I got a voice mail from Debbie in my doctor’s office. I’m definitely paraphrasing but it said something like: We got a call from your pharmacy requesting a refill on your prescription. You haven’t been seen since February so we can’t refill your prescription unless you make an appointment. You need to call our office and make an appointment.

The message would have been fine if a few things were different: 1. If her tone were pleasant or at least not so freaking rude. 2. If she had checked to see my appointment on the books for May. 3. If she had left the office number instead of making me look it up. Read the rest of this entry

In the Office

The nice thing about having online access to my test results is that most of the treatment decisions are made and communicated before I even make it to the doctor’s office.

A week and a half after getting my blood drawn, I went to see my endo. She had already advised me to start taking a supplement AND complimented my numbers via comments on my labs.

#WaitingWithDiabetes

When I wound my way up to the endocrinology department I answered the standard questions from the nurse got weighed and then offered her my left arm for blood pressure, “If you don’t mind, I’ll have you do my blood pressure on my left arm since I have my site on my right arm.”

“You have your what?” she asked me as I shrugged off my cardigan.

“My insulin pump,” I explained and turned my arm to show her the OmniPod on my arm.

“So that doesn’t fall off of your arm?” she asked. I said no and that is stays put just fine. “So you like your pump?”

“Yes I do, I love that it’s tubeless,” I responded. Then it was like something dawned on her and she took a closer look at my right arm.

“Your pump is tubeless! So it has a cartridge in the white thing? How often do you have to change that?”

I explained that I wear an OmniPod and I fill each pod with insulin and put a new one on every three days.

“I know it’s stuck on there pretty well, but have you ever had one fall off before?” she asked.

“None have ever fallen off, but I have accidentally ripped one off my leg before.” She responded that it was interesting and finally took my blood pressure. Read the rest of this entry

Spend Time Listening

It’s been awhile since I posted anything significant about diabetes. I still have diabetes. It still creeps into every aspect of my life, it especially horns in on my sleeping as of late.

I started writing this post then the DSMA Blog Carnival topic for October was posted as: What can diabetes educators/HCP learn from the DOC? and I thought this kind of relates, continue reading for some reflections on my last endocrinologist appointment.

Most of the time I don’t have a problem with the fact that my endo sees only adults making me one of her few Type 1 patients or that I’m treated at a teaching hospital and spend most of my appointments with doctors in training*. But at my last appointment I did.

The doctor in training that I saw seriously lacked patient communication skills. She did all of the things that people with diabetes hate. She picked out a particularly high number on my log and asked what happened. I explained to her that I had an infusion site failure, I took the proper steps to fix it and pointed out where my number stabilized (in reasonably short order). She practically disregarded my explanation and fixated on that number and how to fix it for that time of day until I stopped her and said that I did everything right to fix it and that one number didn’t represent my general diabetes status during the afternoons. Then she said, three different times, “Your A1c went up.”

“Your A1c went up.” “Your A1c is up by .2.” Yes, yes I realize that my A1c increased by .2. It’s 6.1 from a 5.9, please move on. That’s only an average glucose increase from 123 to 128. And the goal on my chart is under 7% and my personal goal is under 6.5% so I think I’m doing ok. Clearly, my doctor in training had no idea what it’s like to live with diabetes. She asked about complications (I have none), she asked about any other issues that I was having and I explained my frustration with massive after lunch spikes, which she couldn’t find on my log to be a problem and said, “We’re okay with the 160s after you eat.” That’s when I said, “but I’m not.”

I see these doctors in training for chart updates and basic reviews of my logs since my last appointment, then I see my endo and they go quiet. Hopefully she learned something when Dr. O was unfazed by my A1c jump and was attentive to my after lunch frustration (that was when she switched me to Apidra).

The two positive things that this doctor in training did were to ask me about my pump since she wasn’t familiar with OmniPod and to talk about my kidney function improvement. She answered my questions about what I could do to continue reducing my nephrology risk (continue keeping my blood sugar in range and keep doing what I’m doing with my blood pressure).

This appointment was awhile ago, and I’ve been thinking about it off and on and been bothered by the communication/customer patient service aspect of it. I know that I’m not alone in feeling frustrated when healthcare professionals don’t acknowledge the day-to-day life that affects diabetes and that things happen beyond our control. The logs that they chose to look at were all of my test results from painting and moving into our new house, a situation that is not my regular and will throw my numbers into strange patterns. Situations that need prepared for and addressed, but not treated the same way as my typical routine.

How the DOC fits in Read the rest of this entry

Crazy Eyes

The last time I went to the eye doctor was my freshman year of college. My optometrist at the time said I didn’t need to come back until I graduated…. so I waited a year after that and made an ophthalmologist appointment for yesterday.

They did not do the annoying puff test to check my interocular pressure… they did the touch test. I think that was freakier and more unpleasant. I also felt nothing.

This was the first time that I’ve ever had my eyes dilated as well, so it was strange, really strange. A different person did my regular eye exam and the ophthalmologist came in after my pupils had overtaken my eyes. I tried not to be offended when he said, “I see that the main reason you’re here is because of diabetes, now you’re type 2?” He made the sweeping assumption that because I was diagnosed in my 20s that I was type 2. (Also: Um read my chart? It should clearly say type 1, my eyes are dilated, not yours.) I corrected him and he asked what my last blood sugar reading was as well as my a1c.

At the end of my appointment, he said out loud while he wrote, “Insulin-dependent diabetic: No eye complications. Benign freckle* on left eye.” I wouldn’t be me without something slightly strange written on my chart.

I left the office with a prescription for new glasses and I had my shades on by the time I hit the all-glass lobby of the medical building. My pupils remained crazy big when I went to bed last night (they put the drops in around 4:15pm).

Freaky, right?

Read the rest of this entry