A few months ago, I asked an older gentleman working at Home Depot for help finding detergent for my power-washer so I could do some outdoor cleaning. After showing me to the appropriate product, he asked if that was an insulin pump on my hip. He told me his doctor was pressuring him to get one, but he is resisting and using shots (just one type of insulin, he wasn’t sure what). He has lots of lows as a result. Not wanting to be presumptuous, I asked if he was Type 1 or Type 2. He told me he didn’t know. That makes me sad that he’s being pushed to use this kind of advanced treatment without even being told what it is he’s treating. I feel there aren’t enough doctors who explain the condition before jumping to the treatment, and if doctors spent more time making sure patients understood, everyone would be a lot better off. (BTW – that detergent bottle is still sitting in the garage — unopened).
A few weeks ago, I was at a water park and saw a kid, maybe eight years old, with a QuickSet on his upper arm (tubing and pump disconnected) and a Dexcom G4 on his belly. He was with his parents and seemed a bit shy. After some hesitation (on my part), I approached him, reached into my pocket, and decided to show him my pump (without the official hashtag). He didn’t care. Rather than express some sort of connection at seeing someone else with an insulin pump, I think he was ashamed that someone proved his paraphernalia was noticeable. He then put on a life vest (I got the sense it was to cover everything up, not to help him with buoyancy) and went towards the water. His mom and I chatted briefly, then we parted ways. I learned that if someone is uncomfortable with their diabetes-stuff, pointing it out may not always be a good idea.
I really think the manufacturer’s do a disservice in coloring the infusion set adhesives, sensors, and pods in stark white. Johnson and Johnson learned long ago that making Band-Aids flesh-toned (though they don’t match all particular complexions) or clear makes them a bit less noticeable. Even the infusion set connectors themselves are clear — blue or pink for certain sets on request — so why color the adhesive for maximum contrast? It doesn’t make sense to me.
One of the Ice Bucket Challenge videos that seems to have gone viral was of a woman who began by saying “I was diagnosed with ALS ten years ago, at the age of thirty-eight”. My first impressions were (1) she looks great for being 48, and (2) she doesn’t look sick. Immediately after those four words in thought #2 crossed my mind, I mentally beat them into submission into the dark regions of my brain. I was embarrassed for having thought such a thing. There is so much I could not tell from the video, and when she spoke the words “…while I still have the ability to…”, I realized that her decline was a matter of when and not if. She may be doing better than many others with the disease, but that doesn’t mean she doesn’t struggle – and I shouldn’t have doubted, even for a split second, what she was going through. I’ve had those same four words unfairly directed towards me, and I’m ashamed for having made a similar observation about someone else.
I have over thirty unfinished drafts in my WordPress folder. Many of them seemed to take a negative turn as I wrote them, so I abandoned them. Many others were rambling about my 530G pump trial, which I also abandoned because they weren’t terribly interesting and I didn’t want to come across as a corporate shill. Some of them were negative and about the pump trial. Maybe someday I’ll share the first paragraph of each and let you vote on the one I should complete.
I finally figured out how to successfully put an Enlite sensor in my arm tonight and (sort-of) apply the tape one-handed. I’m so proud of myself. Surely, no one else cares.
Now that the trial is over, I’ve abandoned the belly sites for the CGM. The upper-butt works so much better for me, and I’ve used that area exclusively until tonight’s arm-site. (Which is actually my second try at the arm. The first was disasterous because I realized partway through that I had no plan for applying the over-tape).
Part of me wishes I had a Dexcom and a Nightscout setup. This way, I could deny people access and redirect them to a YouTube video of Mick Jagger demanding “Hey you! Get off of my Cloud!”
I can’t wait until December. In December, I anticipate that the buzz from this summer’s endless alphabet soup of conferences will have subsided, the month of November will fully exhaust the hardcore requests for advocacy, and the DOC will come back to telling stories. While I certainly appreciate the efforts of those who are far more ambitious than myself, I’m becoming a bit turned off by the seemingly never-ending prompts to do, write, sign, comment, donate, buy, call, email, watch, vote, attend, walk, ride, retweet, share, and so on. Being able to relate to others through stories — without any agendas or expectations in the subtext — is what drew me into the DOC in the first place. I’m sure it’s not just me, because the feedback I cherish most is that which comes from others who relate to my stories, not my requests. I look forward to connecting on a friendly level again, free of pressure, influence, and sales tactics. Hopefully by December.
When I first delved into this concept of using the internet to share my incurable disease with the rest of the world (hat-tip to Chris for the best tagline…ever), I figured it was just a phase: something I’d find enjoyment in for a short while, and then I’d move on to something else. I didn’t know how long it would last (I surely didn’t expect it to go on this long), and over the last few weeks I’d been wondering if my spark was out and my time was done. Laddie’s post on Blogrolls prompted me to revisit my own, and I realized how many blogs just disappear or go dormant without warning. That makes me sad. People are certainly entitled to move on, but since I mostly don’t know d-bloggers in real life, I don’t know if they just gave up on blogging or if something really bad may have happened. So I make this promise today: when the day comes that I decide to retire this blog, I’ll let you know. I won’t just let it languish in limbo and uncertainty.