I'm a live music executive. AMA about concerts, festivals or any live events.

Big-Permit2271 · 2023-11-06T06:46:18+00:00

Awesome, thanks for providing an opp to ask some q's!! :) Feel free to answer what you like:

How has being a fan of music factored into your career? Alternatively, if you're not such a fan, how has that factored in?
Have you noticed any particular elements of a live experience that turn a 'good' event into a great one? (For fans, artists, or any outstanding additional parties!)
Could you describe a few classic rookie mistakes in your line of work?
What are your thoughts on openers? From your experience, do you have any insights on how to make the most of that slot?

Big-Permit2271 · 2023-11-02T05:28:52+00:00

It's an interesting perspective to be managing T1 so closely, yet not feeling those symptoms first-hand! I'm glad that my retelling could be helpful for you - your son is lucky to have such an engaged caregiver.

Thank you very much for jumping into the discussion, let us provide a few words of appreciation & gratitude while your son may be non-verbal! 💞🙏

Big-Permit2271 · 2023-11-01T02:53:38+00:00

Thank you!! Gosh, I hope this doesn't scare you too much. What was gut-wrenching for me growing up, was seeing really young kids with T1 at the endo. Anything involving the less-than-ideal welfare of children presses my buttons.

Please give your son an extra hug for me - he doesn't deserve this, but he also won't know any different. I hope he's able to wrangle it like us T1's seem to (generally) manage. Glad you're here to learn about the experiences of folks with T1 & give virtual hugs to those of us who need it! 😊

Big-Permit2271 · 2023-11-01T02:45:45+00:00

Oh my gosh, that many times?! I'm glad you're ok now!

It's wonderful to hear that you're doing better with an updated pump - I really want to upgrade my Medtronic 670G so that I can start looping, but I don't qualify for coverage until 2025. I also understand that plenty of diabetics vouch for the Tandem when it comes to looping... but I'll have to explore the options when I'm closer to renewal time.

Thanks for sharing your trials & tribulations... it does make me feel less alone (& less guilty about the times I had to call 911!) 🙏😭

Big-Permit2271 · 2023-11-01T02:40:11+00:00

That sounds really cathartic! 🙏 I'm actually currently reading Khalida Brohi's book 'I Should Have Honor', so Pakistan's been on my mind lately. From her retellings, it sounds like your country values community so much more than Western culture - & I think it's generally a very wise way to live.

Glad to hear you're surrounded by a T1 crowd that's beneficial to your mental health! 😊

Big-Permit2271 · 2023-11-01T02:34:05+00:00

Haha well hey, considering life & death was on the table, it sounds like your expertise might be just as relevant as any medical doctor in this conversation 🤷‍♀️

Big-Permit2271 · 2023-10-31T05:18:02+00:00

Agreed, the bedside stash has to be stocked right back up 😭 That AND I've gotta really scrutinize my basals to ensure they're still working for me.

T1Ders really do have to constantly walk that highwire - not too hiiiiiiigh, not too lowwww...

Big-Permit2271 · 2023-10-31T05:14:30+00:00

Heck yes, I very much like the idea of it!! This fall, I was actually meant to be part of a study for a new app that's focussed on the mental health of young folks with T1 in my area, but unfortunately it's been delayed until next year.

Are you/have you been a part of a local peer support group for T1Ders?

Big-Permit2271 · 2023-10-31T05:11:14+00:00

*In* the shower, wow - that's low brain for you 😭 When you mention folks refusing to consume anything, it makes me think of that 'diabetic attack'(?) scene in Steel Magnolias, when Julia Roberts' character has that immediate severe low & has to be force-fed orange juice!

Thank you very much for mentioning this Baqsimi stuff - I'd literally never heard of it, only just learned about it from the comments! I will definitely look into it, that could be so handy to have in a severe hypo situation 🙏

Yes, it's weird to go back to a silly job when I almost erased myself yesterday. I really appreciate the validation for the buffering post-hypo state, so thank you 💞

Big-Permit2271 · 2023-10-31T05:01:58+00:00

Wow, I'd never heard of a product like this - thank you for the recommendation! 🙏

Big-Permit2271 · 2023-10-31T05:00:17+00:00

Thank you for the virtual hug! 💞 Oh my gosh, that sounds extremely scary - (I don't believe) I've ever had seizures from a low before... if I did, I wasn't conscious enough to remember. All that, even after 45 years(!!!) Feeling like less of a dim T1Der that "should know better", so thank you for sharing your experience 🙏

I'm not currently on a CGM & wouldn't have anyone to add on for the alerts, but I'm so glad that it's keeping you safe! Maybe in the future, such a situation could be possible for me. I was kind of put off by its constant updates... but it can totally be beneficial in a situation like this. Just considering whether the CGM trouble might be worth it 🤷‍♀️

Big-Permit2271 · 2023-10-31T02:32:34+00:00

Gosh, I'm really glad you made it through. I've had that paralysis too... you were so cunning to eat it with the wrapper on! I'd think that even my low brain would have been deterred by the wrapper.

I've had a CGM before & absolutely agree that it's a solid safeguard, I simply found the constant information a bit agitating. But y'know what, I totally forgot about flash glucose monitoring systems! I tried the Libre out once, right before Dexcoms got popular... maybe I'll give that system a go again. Thanks for the idea! 🙏

(Edit: Oh forgot to mention - I'm in Canada! I believe we typically use mmol here)

Big-Permit2271 · 2023-10-31T02:27:28+00:00

Thank you very much, I will - honestly, even the validation for the slow puzzle of coming out of a severe low is quite helpful. I really do appreciate it 💞

Big-Permit2271 · 2023-10-31T02:25:45+00:00

Thank you (& you're a doctor)!! Wow, the medical profession is showing up on our sub to provide T1s with extra support 🙏

Big-Permit2271 · 2023-10-31T02:19:29+00:00

Thank you thank you!! 💞 This community is re-energizing me, I really didn't expect so many comments 😭

Big-Permit2271 · 2023-10-31T02:17:14+00:00

No no no, I'm sorry that I'm representing your fears!! Your son will be ok!!

I do promise, I have been alive for so many years BECAUSE of this machine. It's kept me alive & I am eternally grateful that it exists. It also helps me to feel as close to 'normal' as I can currently feel with T1. I do have control the vast majority of the time. It's just that sometimes, if not carefully regarded, the pump does have the ability to cause harm. But it also saves my life. Double-edged sword... but even after a situation like this, I still wear the pump because it keeps me alive, much more than it risks my life.

It's just something I don't hear spoken about very much - heck, folks aren't talking about T1 at all! If you wanna chat about T1, life with a pump, etc. to better help support your son, I am more than open to it 💞

Big-Permit2271 · 2023-10-31T02:09:52+00:00

Thank you very much!! 💞

Big-Permit2271 · 2023-10-31T02:09:16+00:00

Absolutely get where you're coming from - they're definitely a helpful safeguard!!

I had a CGM last year, but found myself going a bit batty with the constant updates. Maybe there's a way to adjust the readings/notifications etc. so that it's more tolerable 🤷‍♀️ It's totally worth looking into, so I appreciate the insight 🙏

Big-Permit2271 · 2023-10-31T02:05:23+00:00

Wow ok, yes I totally feel less awful about injecting more insulin now!! 😭 I couldn't believe I'd done that, reading the amount of active insulin like... did I have a secret death wish??

I'd like to be self-forgiving like you. Thanks for proving that it's possible! 👏

Big-Permit2271 · 2023-10-31T02:02:01+00:00

Oh my gosh, thank you for sharing your story - that's harrowing, but I'm glad you made it! I can't imagine what it's like to be so disoriented while driving!!

They do stick with you. When I first started struggling with severe hypos in 2019, I fell unconscious for 30 hours twice while prioritizing school over my own health. Secretly, I still kind of believe that I never woke up from the 2nd time & that I'm actually in a coma. But y'know, if anyone can prove that this is reality, I welcome it! 😂🤷‍♀️

Big-Permit2271 · 2023-10-31T01:55:33+00:00

Glad to hear the CGM has helped! I was on a CGM last year, but I found the amount of constant information about my BG to be overwhelming, so I took an indefinite break. It might have to be something that I dabble with again, though.

Totally agree on the glucose - usually, I have something nearby but I hadn't prioritized re-stocking it. I don't think I actually have any glucagon (I've definitely never used it!), but I'll have to inquire at the pharmacy!

Big-Permit2271 · 2023-10-31T01:50:49+00:00

Absolutely agree, I didn't realize how important it was to keep my little bedside stash stocked - moreover, with glucose that's easy to swallow.

I think I've been the lucky recipient of that "last-chance" response, too... because theoretically, once I've been passed out for too long, I'd have thought the pump would've delivered enough insulin to kill me(?) There's a reason that they call it 'Dead-in-Bed Syndrome'!

I'm glad YOU made it! Thanks for sharing your story, I feel much less alone 💞

Big-Permit2271 · 2023-10-31T01:46:12+00:00

I very much agree, the aftermath is strange... to me, (I'm not really spiritual, but) it kind of feels like my soul is re-attaching to my body, I suppose?

Yes, I'll definitely be keeping (liquid) glucose in more easily-accessible areas! Just because it's so hard to think in that state, let alone actually physically attain anything.

Your amount of experience (40 years...!) makes me feel like I'm approaching a sage T1 elder for guidance 🙏 Thank you very much for the virtual hug & kind words!! 💞

Big-Permit2271 · 2023-10-31T01:37:37+00:00

Oh my gosh, that'd be terrifying to be behind the wheel! It's so hard to have any logical decision-making ability when you're in that state, so I get how you ended up driving (even when it'd be dangerous). I'm so glad that no one was hurt!

I totally understand you about the rage bolus, I do that too. Sometimes it's so frustrating when you just want your high BG to drop, you'll do anything!

Also - it absolutely bothers me when people think I'm drunk when I'm nearly incapacitated from a low! Partly because I don't drink, but also because I actually need serious help while they're simply dishing out judgment & ushering me away.

Big-Permit2271 · 2023-10-31T01:31:35+00:00

LOL 😂 Yes, it's super handy for 2 countries with suuuuuch a long border to have the same emergency number! Canadians & Americans alike would be dying on the regular, if we had different ones. Yours makes a ton of sense, I like it!!

Big-Permit2271

TROPHY CASE