Ten things

I

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).

II

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.

III

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.

IV

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.

V

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.

VI

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.

VII

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).

VIII

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!”

IX

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.

X

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.

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Posted on September 16, 2014, in Diabetes. Bookmark the permalink. 21 Comments.

  1. Ten great subjects and each one is probably worthy of an entire blogpost.

    I’m approaching 1-1/2 years of blogging and I have no idea how much longer I will be able to keeping doing it. Sometimes it seems quite odd that so much of my life and writing is focused on diabetes. On the other hand, I think blogs are as much about relationships as the actual topic being written about. When it’s time to quit blogging, I hope that I will be motivated to write a “farewell” post rather than just fade away. Your ten great subjects today are ten reasons that I hope you don’t quit writing…

    Like

    • Some of them actually did start out as their own blog posts, but beyond what was summarized in the paragraph you read here, most of it was repetitive filler. I’m trying to force myself to be more concise… I’m not very good at it. And thank you so much for your last sentence.

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  2. Where’s the Like button? I like this post a lot. Thanks.

    Liked by 1 person

    • I’m not sure if your comment about the Like button is sarcastic or not; but the truth is that I disabled it because it seemed to be used by spammers who just want to call attention to their own websites via the “so-and-so likes this” list. But either way, I’m glad you like it.

      Like

  3. This is one of my favorites of your posts. I especially love the uncomfortable water park story. You are so frank. It’s wonderful. I’m glad you’re still writing.

    Like

  4. 2. I never thought of it that way…. that makes me really think about how some people feel.
    5. You know how I feel. Negative or not, truth and feelings are understood (from me any way)
    6. I CARE! because I was never able to get a sensor into my arm without destroying it. and mine were paid for out of pocket.
    9. YESSSSSSSSSSS!!!!!!!!!!!!!! need I say more?
    10. I recently removed my blogroll from my blog for those same reasons. People stop and disappear and that’s their prerogative but it makes it very hard to keep up with them and deliver a blogroll to someone who is searching for some help. Nothing sucks more than clicking link after link and ending up with an error or a blog that hasn’t been updated in 2 years. I now often direct people to a blog whose blogroll is kept up to date. Now I will send them to Laddie 🙂

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  5. VI: CONGRATS! This is huge news! I have been wearing my dexcom on my arm and every time I put it in I feel very accomplished. You should too!

    IX: I am looking forward to December, too.

    All things: Thank you for sharing these stories. Your voice is so authentic and kind. Hugs!

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  6. I enjoyed this post! Don’t stop writing. Wondering exactly how you did your arm site on your own. Did you lean up against a wall and roll your arm down a bit to find some fat? Would love to see a video of that!

    Like

    • Ah, the ol’ “lean against a doorway to pinch up some fat” trick they taught me in the syringe-days (which I tried exactly once)! Nah, I didn’t do that. In fact, you’re not supposed to pinch up fat for the CGM, because the sensor will just squeeze when the skin gets un-pinched.

      I actually just used the Enlite Inserter and it was quite easy, just hold against the skin and click. The tough part was applying the overtape… after removing the film from the adhesive, I folded it back over itself longways (so the sticky part was exposed on both sides), held one edge between my thumb and index finger, and the opposite edge between my pinkie and ring finger. With the aid of a mirror, I placed the tape over the rounded edge of the sensor, then tried to unfold it to extend it over the connector. The tape creased a bit in the process, but it worked.

      I don’t have video of this, but I do have a step-by-step video of putting the previous sensor, the Sofsensor, in my arm on this blog, as well as a montage of a month’s worth of flesh-piercing insertions of various types. If you’re interested in arm-sites in general, Sarah (Sugabetic) posted video of an Accu-Chek infusion site in her arm yesterday, and Kim (Texting my Pancreas) posted one of a Dexcom insertion well over a year ago.

      When I get to a real computer later today, I’ll post some links.

      Like

    • Here are the links to the videos I mentioned (links are to the blog page hosting the video, not to the video directly — this way you can read the post and leave a comment)

      My Sofsensor insertion in arm: http://wp.me/p2aBl3-gE
      My 30-day “Sharply Dressed” video: http://wp.me/p2aBl3-1aX
      Sarah’s Accu-chek Ultra-flex insertion: http://sugabetic.me/my-experience-with-the-ultraflex/
      Kim’s Dexcom-in-the-arm: http://www.textingmypancreas.com/2012/01/wait-you-do-that-yourself.html

      Like

  7. Really loved this list, Scott! And I was literally shouting YES! at my screen when reading the “denying access” point in VIII… great stuff! And congrats on the arm site — that’s awesome; lost my ability somehow to do a Dex sensor on the arm, after watching Kim V’s video on that, but need to start trying again. I also really liked your point about the little kid at the pool – have felt that way sometimes, too,, where I just didn’t want to talk about it; maybe not that I was ashamed or anything, but just didn’t want to wear D on my sleeve (or body) for the world to see. That feels ironic. Anyhow, thanks for this. and as always, for writing and connecting through real stories. I am glad you write and share.

    Like

  8. Every time i come back here, I’m reminded why I love your blog so much! I have reactions to some of your numerals (kudos on the Roman numerals rather than boring 1,2,3)…
    I I am time and again appalled at the lack of patient education and concerned about the lack of patient persistence (i encountered two over the weekend who were told they had “high sugars” and didn’t bother to ask what to do about them)
    V I have 154 drafts, most off which will never see daylight. Some things just don’t turn out to be blog posts.
    VI That’s talent! I still make my husband help me when I put a Dexcom sensor in my arm.
    X I also worry when a d-blogger goes silent. I blog about a lot of topics, I think if I blogged only about diabetes i would burn myself out on it quickly.

    Like

    • Thanks for your comments, especially the first sentence. I am trying to keep things modern and fresh (after all, it is MMXIV) — which reminds me that I should find time to post something new, despite somewhat falling victim to response X.

      Like

  9. I don’t know about ‘ever’, but thank you.

    Like

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