I've been absolutely horrible with blogging in the past year! This is an absolute shame, as so much has happened and this has been such a big year of transition for me in many aspects of my life. So instead of basing this post on something entirely diabetes related, I figured I'd try to jump back in with just a brief overview of everything that's been going on!
Last year in April, I received my very first continual glucose monitor (CGM), my Dexcom. I have to say that it has absolutely been the singular most life changing tool to help me manage my T1D. It's almost hard to explain both my simultaneous adoration for and dependence on this piece of equipment now that I've enjoyed it for over 10 months. The Dexcom is an insertable sensor that is wearable for 10 days and provides 24-7 around the clock blood sugar readings, alerts when I'm low/high, as well as an app that compiles all of my data into my A1C, blood sugar trends, and allows my doctor to easily download my readings. Honestly the best way I could describe having a Dexcom is like going through the entire day without your phone or watch and having no way to track the time except for physically looking at a clock on the wall or asking the time. It does the trick, but there's no comparison for managing things when you have the availability to access information any time you wish. And I can sleep easier knowing I'll have an alert should I ever go low.
In July, I also transitioned to an insulin pump after MANY years of pushback on my part. The Dexcom made a pump seem more palatable, seeing the ease it provided me, so I was ready to make the jump (much to my doctors delight). I'll definitely add that it was a very expensive year for health care costs for me... but would that change my decision? Not at all. Some things are just worth it, and both of these tools have been so instrumental in helping me manage my health and make diabetes a smaller part of my life. My relationship with my pump, the tubeless Omnipod, has been more a love-hate than my Dexcom. Omnipod is wearable 3 days and I do have to be careful to time things well otherwise my pump will expire during the afternoon at work. I also have to be mindful of placement for my princess parties, meaning my legs take somewhat of a beating. It's a lot easier for your blood sugar to spike if there is a malfunction since you receive little bursts of short acting insulin throughout the day, too. Randomly I've been out and my pump would just malfunction and stop working. This has happened on 3-5 occasions since I got it for reasons I and Omnipod have been unable to figure out (random occlusions), so I have gotten in the habit of always carrying a spare insulin pen with me in my purse. I find that if my blood sugar ever spikes from a pump malfunction, I almost always get sick - I don't really know why a high from a faulty pump makes me feel worse than a high back when I was on MDI's. Or, perhaps the good answer is that my sugars are far better controlled now, so I'm just not used to high levels anymore. Compounding things is the awful adhesive allergy I've developed to the Omnipod - after about 4 months, the adhesive started giving me what I have to assume is contact dermatitis that is extremely itchy, painful, and scars me. It's gotten so bad that my skin as a whole has gotten more sensitive to adhesives, even certain fabrics, that will give me a rash. And I have to use a barrier bandage on top of my pump adhesive, and even that has been wearing off in effectiveness, leaving me scrambling to constantly try out new barrier tapes and skin preps. This has been very difficult for me, but I'm trying to stick it out because I just love the convenience of a tubeless pump. If I can, my next goal is to download a closed loop system, and start combining my pump and CGM to allow an algorithm to essentially control my BG. I've heard it's a bit of a learning curve, but I'm up for the challenge.
I also switched jobs... October brought a lot of new Medicare coverage changes to nursing homes, and it was at that time that I was really itching for a change, regardless. I felt I needed to try to move on and push myself into new roles and areas in which I could learn different skills and develop myself as a clinician and person further. So with a good deal of difficulty, I made the decision to change into a new role as a director of rehabilitation with Legacy Healthcare, and I can honestly say it's been such a healthy and fulfilling change for me. My work life balance is wonderful, I've had wonderful feedback from patients, and I still have so much to learn, but I've already grown exponentially and I feel I can use a lot of my life skills from my owning and operating a business for years in my "adult" job. This ability to blend skills has made me feel a whole lot more synced into life in a whole, instead of splitting my life into two separate worlds, and I am just so thankful for that in every aspect.
There's been a lot of minutia aside from that. I've reached out to a couple of news stations and newspapers to try to advocate more for T1D, but haven't really heard back from anyone. Nonetheless, I've been so encouraged because news about the insulin pricing crisis has exploded in a big way, and people are finally starting to wake up and listen to our cries about not being able to afford this life sustaining drug. It's made me so grateful to know that we are passing laws that can prevent people like me, struggling and vulnerable young adults who are underinsured (amongst so many others), from having to resort to dangerous and difficult methods to obtain insulin - which is good also because unfortunately, there's been a lot of crackdown on "black market" insulin, making it hard to obtain it online for people who need it. I don't even know how I would manage now were I in the same position I was in 3-4 years ago. It's a scary thought, but encouraging to know I had so much support from people who helped me never have to go without it.
I've gotten into cons and cosplay in a big way, and recently gotten a sewing machine to try and start making my own costumes. I've also really delved into my enjoyment for dungeons and dragons, become a full-on anime nerd, and been consistently working out for over a year now!
Aside from that, I've also been a little quiet because I've been trying to advocate for T1D more on social media. And, I've been writing my book! It's been my goal for years to compile this blog into an actual book, and a dream of mine to write one since my diagnosis. I've really been sitting down to focus on cleaning it up now, and then (hopefully) pursuing the next steps to actually taking this goal into fruition. Any and all advice welcome!
I'll end this with saying thank you to everyone that has read this blog over the past few years, and helped with advocating for T1D awareness. It means the world to me. I'll definitely try to be a lot more consistent with blog posts this year, and I'm hoping 2020 lays a lot more groundwork for progress for health care coverage improvements and medication prices in this country.
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