Temporarily Permanent

The movie is Spiderhead, don’t bother lol. Chris Hemsworth and Miles Teller, idk who roped them into it - or how much Netflix was paying them, but here I am posting on tumblr at 2 AM about it haha. (No major spoilers ahead).

The movie is about drugs given to inmates and tests done on them. In this day in age, they convey that effect on a phone - a simple swipe of the finger and the test subject (a person) is given whatever dosage of this drug, and it effects them immediately, and if too much is given, it can be lethal.

Sound…familiar?

My phone, has an app that’s connected to a device on me (CGM), that displays blood sugar numbers every few minutes. In the very near future, my Omnipod PDM, personal diabetes manager, will be integrated into that app, or a separate app, and everything will be done a phone. One, single point of failure. To me - it’s scary to think about.

Also - crazy coincidence - but the other day I just so happened to run into someone the other day at a coffee shop - who’s literally working for Omnipod and that future that I just mentioned. He said he was a developer working on the software - being a product manager myself for software, and someone who’s literally wearing an Omnipod, I had a bit of a chat with him. I actually told him my fears too, about a single point of failure, and ya know - what if someone hacks my phone?!

There will be a future where your blood glucose level AND your insulin management, happens from one device. To me that seems inevitable. And to me, that’s terrifying. Imagine someone hacks your phone and cranks the insulin dosage up, or does the reverse and turns it off. Accidentally or maliciously. I don’t know about you - but thoughts about this type of thing comes up frequently for me.

Not the hacking of a device per day, that shit can and probably will happen - but what comes up more is…the fragile mortality us type 1 diabetics have because of our dependency on insulin, and devices.

Now granted this movie is in the future (it appears so), and it’s ridiculous in nature…but it still somehow finds its way to fuck with my brain.

It’s almost the same way a zombie movie fucks with me. As a type 1 diabetic, I would be - barring any zombie bites to the group - I would be the first to die. Even if we made it to a pharmacy during Armageddon - there’s simply only enough insulin for x amount of time, and when there’s no more, I die.

I know, I KNOW, this is fucked up to think about. But when your life is run by numbers every single solitary second, and your only alive because this solution inside of a vial - you think about things differently.

I mean, when I hear a electronic beeps out in public, I’m not sure if it was me - or if it’s just a noise of a chicken fryer, or a truck, or something else. I’ll literally check my Omnipod JUST to be sure I’m not in any danger.

Granted - I’m extremely and utterly privileged in my life that even when something goes wrong with my pump or CGM or blood sugar - I’m most likely able to fix the issue myself, or get assistance before I’m in a true near death scenario. Despite that, I still have fears.

I mean for fuck sake I’m watching a futuristic movie about drugs in inmates and all I think is…yeah I know what that’s like. The prisoners in this movie are “free” to roam the premises, they can play video games, ping pong, nothing is locked, but things are fhat way because they agree to the experiments.

Diabetic life is kind of similar - in that we are free, we can run marathons, climb Everest, do incredible feats - but we are bound to this ever present threat. A threat on our very lives.

I’ve spoken on here many times about how - how I do feel strong, despite diabetes. I know right now it seems like I’m being incredibly morbid, pessimistic? Idk.

I have always been real on tumblr, and that’s what I’m trying to be. I do feel at times, incredibly fragile because of this disease. This movie made me feel a button press away from death, and when I stop and think about it - it scares me. Like if someone truly wanted to, they could snatch my PDM without me noticing, get passed the code, and then destroy me.

I suppose, life’s fragile for anyone really. I’m just up late at night talking about someone killing me, and yet tomorrow I could get t-boned by a semi truck while driving to the grocery store. Ok yeah, definitely being morbid, but just being real.

Technology has saved me though. Insulin’s mass manufacturing, Omnipod, and CGM’s. It’s really incredible what’s even changed since I was diagnosed in 2011. Things have gotten smaller, better, easier to use, and I now have more information than ever at finger tips too.

So what are your thoughts? When you watch zombie movies or futuristic movies, does your min run wild with what you’d do or where’d you go? Does your mind jump to - how much insulin is in your fridge right NOW?! Or am I the only one losing my mind lol.

I now have a CGM. The Dexcom G6.

It sat in a box for…months, since February I think. It’s June, and I’m not on my second site, and…I like it, AND….I hate it.

Having the view of my blood sugar 24/7 without carrying a glucose meter, is fantastic. My fingers may very well lose their callouses.

Now, having the view of my blood sugar 24/7 is also…horrible. The number, can affect your brain, and to youth it’s ultimately a good thing to see the value - it does affect my psyche seeing it so often.

Also, my biggest worry, was pain at the site, and I am happy to report, I’ve heard virtually none. This new one I have on was weird the first day or two, but overall it’s been great. I’m using my stomach, and im super super thin, and it didn’t hurt at all on insertion, and hasn’t hurt since being in. The first one, took like 2-3 days to get used to. My abdominal area was just tense bc my mind was like what is this? Tighten up? Ok! But luckily after 2ish days my stomach relaxed.

Now though - I’m seeing more how bad things have gotten. Im seeing 300’s after meals (with appropriate bolus) and I have to get things under control.

Information is power, and I’m just getting started.

Also! Omnipod now has the Omnipod 5, that INTEGRATES with the Dexcom G6. So, automatic insulin delivery to correct highs. Yup…halfway to an artificial pancreas.

I saw the announcement, and was hesitant (I always am) but after these two weeks with the dexcom and REALLY struggling…I’m jumping in. The only issue is I have a current pod support for 90 days. So I won’t get to try the Omnipod 5 series for a bit.

I’ll report back before then - as my goal is to go multiple days in range, and fucking celebrate when I can do that.

More to come.

I posted on here a while back that I needed to get back on track, and boy was I right! Just got my first A1C in 5 years. Yes, you read that right.

7.9.

I’ve never had an A1C above 6.9, so this is quite the gut punch. I’m here literally typing this at the endocrinologist. Now, it’s pointless to say this, but I will because I want to defend myself (from…myself), that the last 5 years haven’t been bad. I think, it’s been since 2021 that I’ve been in this, weird, not being as on top of things state.

The past month or two prior to October, I knew things weren’t going well. 200+ BG’s all the time, just couldn’t get a handle on things. In the summer, I thrive. I run, I shoot hoops, I skateboard, I am way more active and my lifestyle is different. So I got a new endo, had an appointment early November, Ans now I’m here at my follow up since blood work.

Big change coming - I’m getting a CGM.

Of course, insurance issues. I received one piece (transmitter), not the other two. Fun times.

I’m going to report back here monthly I think. It’s a new year, and to some that means new beginnings, new goals, I don’t like to set those, but fuck it let’s do it.

2022 (by June) - My A1C will be a 6 flat.

I feel as though that it very achievable and hopefully with a CGM it’s a breeze.

That’s right, 10 McDoubles.

10 bucks.

1,000 pennies.

He then got a parking ticket for $40.

He had life saving service - and will have surgery to move a vien, and has so far paid 1/4th of a parking ticket for it.

The “system” of insurance in the United States, isn’t just broken, it’s non repairable.

I read an article the other day - and friends/family have sent it to me - where an older gentleman has been “cured” of type 1 diabetes. Doctors were able to inject him with stem cells that have essentially brought his pancreas back to life - and the organ is now secreting insulin again. I put “cure” in air quotes because of two reasons. 1. He is on pills (immunosuppressants) at the moment to ensure the cells created aren’t rejected at some point. 2. The initial injections, and then subsequent pills, come at a cost.

The question a lot of type 1 diabetics face is…if a cure for diabetes was discovered, why would anyone give it away for free?

I mean, the logical and moral answer is - to save thousands of lives, you make it free. However it’s more complicated than that. Insulet / Omnipod gets hundreds of my money throughout the year, and thousands from my insurance company, why would they let that cash cow get destroyed by a discovery?

Do I have hope for a cure for diabetes? Yes.

Do I count on that hope? No.

I hope the man who’s pancreas is working, stays working. I hope he sees a doctor 1-2 times a year and forgets how many carbs are in a cup of orange juice.

Back on my running shit - trying to run 2-3 times a week. Honestly feel like god damn goku after a run. The rush of endorphins is awesome.

Besides that - it just helps with diabetes overall. It may make me want to eat the entire house - but I’d rather be on the lower end of the spectrum than constantly seeing high numbers and having to bolus and wait for it to come down.

So this is hard to post - but - I have to admit something, and although I’m not sure who will even see posts on this old blog, I feel the need to post it here.

I have significantly been lacking in my diabetes care.

1. My Omnipod is out dated. I’m going through the process to get the Dash PDM and can’t wait to be done with the old PDM.

2. I simply don’t test my blood that often anymore. It’s something I used to constantly say on here - “test your blood, test your blood, test your blood”. It’s literally the best thing you can do to see the WHY. Why am I feeling so hot? Why do I feel like shit? Why am I thirsty? ect.

Testing my blood 5+ times a day starts NOW.

3. I’m thinking about cutting some things out of my diet - for now.  Pizza, you delicious treat you...I love pizza (if you don’t are you human?) but we eat it far too often and I eat too much of it when I do. So, for NOW, I’m gonna try and not eat pizza for a bit. We’ll see how long that lasts.

4. I need to find a doctor LOCAL to me. I have been in PA for 5 years, and have somehow managed to just keep my diabetes care at a doctor in NJ, and I’ve had to switch doctors because of retirement, another one left, and me not following up. That changes now.

I’m sure there’s more, but I just need to take resonsibility.

Over all health - good.  I’m running a lot in the summer, I feel good, but I have been having high blood sugars at night. I don’t know my A1C currently, and I need to get off the old PDM for my sanity. 

Take responsibility - and make the changes you need to make.

When your batteries die AGAIN, because of “meter error 4” constantly draining the battery. Yet your out of warranty and can’t get a free replacement for - the THING THAT KEEPS ME ALIVE. God I love America.

I want to get the new PDM that interfaces with my phone, but honestly I’m a little skeptical that it will be covered.

However this batteries dying on me bullshit is getting old. Now I have to replace my pod AND batteries.

I woke up just not wanting to deal with this anymore. The insulin, the carbs, the pods, the insurance, the pain, the worry, the anxiety, the mental tole.

But, here I am. Another day, another chance to live.

Just thinking to myself about how long it’s been since I’ve been diabetic. I was diagnosed on May 8th, 2011 with type 1 diabetes. It’s been 8 years, 5 months, and 16 days since my life changed forever. It was Mother’s Day, and it was not a fun day.

However, 8 years later, I’m still here.

I just ran my third race and feel amazing. I actually almost just ran 3 miles at under 7 min a mile, but I missed it by a little bit. I’m pursuing YouTube and hopefully can one day go full time as a creator. I’m with the love of my life. I have two dogs, two cats, and the best friends and family in the world. I have a great job, I have health insurance, I have an insulin pump to help me with this crazy disease. I’m very lucky to still be here today.

Now life isn’t all sunshine and rainbows of course, especially with this disease, but I thought I’d just take a minute to express how grateful I am to be alive still.

I’ve been using the Omnipod now for...probably 7 years now.  I love it, I have good and bad things to say about it but overall it’s changed my life.

With that said, and maybe this isn’t just with using the Omnipod, I feel trapped.  Today I had to put a new pod on, the beeping assured me of that *rolls eyes*.  So I got a new pod on and it hurt me me as it inserted way more than it normally does.  Now this is a tell tale sign in inserted in a bad spot, and there could be bleeding or it just might not work properly.  That’s not always the case, so I walked around and sat down a few times and tried to get through the pain (I place mine on my upper butt area). 

A few minutes go by, and it’s just not getting better. It hurts, it’s uncomfortable, I just know in my bones something isn’t right. I’m about to head out for the day and the last thing I want to do is, deal with unnecessary pain, and to also possibly have a pod failure.  So I take it off and sure enough, some blood at the site and it must have went into a bad spot.  So I take it off, and then just pause for a moment...and those who use the omnipod, or any pump will understand this...is that when you don’t have a pod on...you’re free.  But, despite being free of a device or tubes, I don’t feel free today.  I swear I can almost feel instantly worse when you don’t have a pod on, but that doesn’t make much sense since the omnipod isn’t trickling insulin in every single second, but for some reason it instantly feels like my body doesn’t have what it needs and I feel terrible.  

Now of course, the feeling of taking a pod off is euphoric.  You get to itch that spot that’s been hidden from the world for 3 days, and it does feel good to not have a bulge on you for the time being.  After that initial sigh of relief, enters the dread of putting another one on.  Like I said, this device changed my life.  It’s not the device so to speak, it’s more for the fact that it’s SOMETHING that has to be on me, no matter what.  I feel suffocated with it on sometimes, and when I have it off I feel vulnerable.  For the first year of being a diabetic I wanted nothing to do with an insulin pump for this very reason.  I wanted to be free of tubes and all that goes with having a pump.  The Omnipod doesn’t have tubes, so when the time came, it was a no brainer.

The entire reason I went to the Omnipod, or well, the main reason, was because using insulin pens was torture.  I had an incredibly hard time since my body fat percentage is so low, and it was much more painful, and I’d do anything and everything to never have to give myself another insulin shot.  I wish it were easier, and one day I’ll try and go back to it, but who know when that will be.

At this point I’m rambling, but the main thing I wanted to kind of get off my chest is that, I feel trapped today. I feel like I’m losing some kind of war.  

Might be the worst feeling in the world.

Just tested my blood sugar and it’s 269. It’s 11:50 AM right now and I’m really hungry. Hopefully in say 15-30min I’ll be good to eat.

It might not seem like that big of a deal on paper, and I try to tell myself it’s not, but I can’t help but feel so incredibly frustrated when I’m in this situation.

I just want to eat, but if I do, it will just cause more trouble. Eating. It’s such a simple yet complicated thing as a diabetic.

Test your damn blood sugar!

I’ve been running lately, and man does it help. Not only does it make my body use the carbs I’m eating for energy, it does wonders for my mental health.

It just gives me the feeling of power, perserverence, and freedom.

Diabetes can feel like a weakness. I mean in a lot of ways it is, but when I run, I’m running despite being a type 1 diabetic. Just that alone feels like I’m doing something big. Is that weird?

I’m putting in the miles, I’m beating personal records, I’m out there kicking diabetes in the teeth.

It just, feels, GOOD.

It’s just been such an empowering thing for me lately, and I want to keep going. I ran a half marathon back in March, and it was one of the most rewarding things I’ve done in my life. I trained briefly for it and it showed, as it was one of the toughest things I’ve ever done.

I’ve talked about doing a marathon, but haven’t signed up for one yet. Maybe it’s time.

I want to get a shirt that says “Diabetes Can’t Catch Me”. Is that lame? Yeah I’m lame, but I wanna do that anyway haha.

Thinking of bringing this blog back. Anyone following still active?

Feel like I’ve gotten off track with my daily diabetes care and this blog helped me for 2+ years, so why not come back and let some thoughts out? I just turned 31, and the last thing I want is to be off track.

*taps on mic*