4
Feb

My local JDRF's first "Adults with T1" meeting

This past week was my local JDRF chapter's first "Adults with Type 1" meet-up. I posted on my local JDRF's facebook group a while ago - back in November or early December - and asked whether they had any programs or meetings for adults with t1. The reply I got said that they were setting up a meeting for people who wanted to get involved with organizing all of that, so of course I said OMG YES. I attended that meeting in December, and from that mtg, plan was for everyone to email ideas for what to do in an AT1 meetup. Two people planned to set up an event, and we (the organizational team) were to send in ideas for future meetings.

Two people from that group organized a meeting at a pub downtown this past week - we got together for drinks, food, and conversation, and it was amazing. It felt so liberating to be able to turn to the person next to me and ask questions about their cgm. I actually got to see a dexcom! it was soooo cool. I  got to sit there and ask questions like "what does a cgm sensor feel like" or "how does it feel to get the overnight results / how have you been able to make changes to your insulin regime as a result of your cgm data?"

I realized about halfway through that I would probably be nowhere as comfortable having those same discussions with my close friends. Don't get me wrong - I love talking about D-supplies with my family, and love researching and reading about new devices, tools, medical research - all that cool stuff. Putting those things together is a little bit different though... There's always a little voice in the back of my head when I rave on about these things to my family and friends... It's the voice that's wondering what's going on in their heads. Are they bored? Wishing I would shut up about health stuff? Wondering why I haven't picked up on how they don't care about learning what a cgm is?

I hope I'm way off, but there's always a part of me that wonders. I didn't realize it at the time, but a few days after sitting down for food and conversation with other adults with t1, I was able to pin down the thing that I enjoyed so much: I genuinely believed that everyone else at the table was just as interetsted in these topics as I was. I could talk about overnight lows and not wonder once whether anyone was uncomfortable or waiting for the conversation to end. It was a pretty great night...

Our next "organizational team" meeting is in about 3 weeks, and the next AT1 meeting is at the end of the month. I'll report back on how it goes :).

11
Dec

Levemir woes & pump updates

Today was definitely eventful!

To explain, I need to start back in November. On the 26th I sent my diabetes nurse an email to ask about where I was on the "pump training" list. Back at the end of September when my name was placed on the list, I was told that the wait would be about 4 months - so I would be looking at sometime around the end of January. Two weeks ago I sent her an email to ask where I was on the list, and she replied back right away to tell me that I was next on the list! She mentioned that she couldn't say for sure when I would be called, but that the next available pump trainer would receive my file and would call me when they were ready to get everything started.

Fast-forward to today: After two weeks, I was getting antsy. I sent another email off this morning to ask again (I know...I should lay off. I couldn't help it though! The wait was getting painful!), and was told that yes, I'm still next, but since their office is closed for two weeks over the holidays, it's unlikely that I'll get that phone call until the new year.

Cue disappointed Melody...

It makes perfect sense, and of course it's 100% understandable that it's highly unlikely that I will receive a pump and be scheduled for pump training before the holidays... but that doesn't stop me from feeling a little let down nonetheless. "Next on the list" just sounded so promising...

 

 

Oh! and afterward - just under 3 hours later, I received a phone call from Medtronic. I had been working with their insurance verification folks when I was fighting with my insurance company for CGM coverage, and after everything had been sorted out (for now, at least?) I told the Medtronic rep that my anticipated pump start was in January. The rep called me to ask if that was still the plan, and explained that for a January pump start she would have expected that my clinic would have sent her the required paperwork by now. I passed along the info that I received this morning, but I have to admit... having to say in that phone call that it would be a while longer sort of felt like the universe pointing and laughing because I got my hopes up :S. I know I'm way over-dramatizing this, but still - that conversation blew.  It came right as I was bummed out from this morning's email, so the timing was kind of unfortunate.

I've been taking my future CGM and putting it up on this fancy pedestal lately. From up there on its luxurious throne (what? the pedestal has a throne on it. Also the CGM is holding a staff and wearing a crown and very kinglike robes. I clearly have no idea what medical devices look like), it taunts me with thoughts of how this week would have been so much nicer if I had its help.  See...this week has been a big pile of suck.

Yes, that is the medically appropriate explanation for this week. BIG pile of suck. I used to be on 11 units of levemir, twice daily (total of 22 units) - until last Monday, when everything went to hell. It started with a wonderful early-morning low that was so bad that Boyfriend had to help me wake up in the morning. He clued in that something wasn't right when he saw me trying to shut off my phone alarm by mashing the palm of my hand against my phone and alternating between crying and yelling at it. He calmly took my phone from me and passed me my glucometer kit. I unzipped the kit, got a test strip into my Contour USB meter, and couldn't figure out my lancet device. He let me try it a few times before he stepped in and did it for me. My vision was so swimmy that I needed him to tell me that I was 2.2. He got me some juice, which I slurped back and then collapsed back in bed, still shaking. He set an alarm for 10 minutes and stayed with me until we were sure I was well out of this low.

That day was just the beginning. After 2 days of persistent lows that were hitting me between meals and overnight, I started gradually reducing my levemir*. I'm now down to 7 units twice daily, so my daily total has gone from 22 to 14 over the course of a week. I'm pretty happy at 7, with (so far) mostly stable numbers and no between-meal crashing... but drastic random changes that seem to occur for no bloody reason? Very frustrating.

All that to say that I am excited for a CGM that will beep at me when my body decides to change my background insulin needs without first informing me. In writing. 6 weeks prior to implementing the change, so I have time to adjust.

 

Hey, I can dream, right?

 

Tonight was also the night of the meeting with some volunteers and staff for my city's JDRF chapter. We talked about setting up events geared towards t1 adults living in the area, since although they have a good program for children and youth, as far as I can tell there's not much for adults living with type 1. Today was the first time in my life I've been in a room with so many people my own age who also have type 1 (and a few who were not too close to my age, and a few more who are parents of young adults with t1). We talked about a ton of cool ideas and possibilities for future events, but that's a post for another day!

 

 

*YDMV...seriously. Don't make changes to your medical ANYTHING without talking to your medical team.

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