Its Thursday, February 20, 2025.  4:41PM.  I’m sitting on my living room couch, attempting to regulate myself after a stressful doctor appointment.  The appointment was routine, at my diabetes clinic, where I have to go every 3 months.  At these routine appointments, they take all the standard stuff: blood pressure, weight, in the moment glucose-check using their own device, and draw blood to determine your overall A1C.

Then, you go see your endocrinologist to review data from the past 3 months (they can electronically access my CGM data and that is what we review together), we discuss what prescriptions need to be renewed or adjusted, where the strategically best pharmacy is to send them (sometimes my local CVS has supply shortages, so I have to use hospital pharmacies to source those supplies), ETC.  It’s always a lot for me, which is why I try to bring a buddy to these appointments.  But the buddy is there more for emotional support, because usually the buddy is WAY more confused than I am lol (it’s just a lot of DATA at once, I don’t blame them!).

Before leaving for the appointment, I received a stressful email from the manufacturers of my medical device that I rely on (my CGM; manufactured by a company called Abbott).  The email said that by September 2025, my current device (Freestyle Libre3) will be discontinued to favor the production of a new device called Libre3 PLUS.  I hate any disruption to my routine because I rely on routines to regulate stuff in my body, so I tried hard not to freak out.  I don’t care so much about the device being new.  The problem is: HEALTH INSURANCE MONSTER.  Any new item/device/prescription needs to be approved and sometimes fought for.  This could take literal MONTHS to figure out.  Its just another routine disruption, and quite a headache at that.

When speaking with my endo, she told me my A1C was 6.8 right now.  So, it did increase as I expected (past few months have been stressful AF), but I was comforted to know it hadn’t skyrocketed as much as I thought.  However, A1C’s are not the END ALL/BE ALL of diabetic management, contrary to what most simple medical texts would lead you to believe.  We had to review and address the extreme blood sugar fluctuations in my CGM data.  Here is a photo of some of the data we reviewed:

If there are too many extreme highs and lows throughout the day, everyday, it actually doesn’t matter that you were “in range” most of the time.  You have to research the quantity AND quality of the blood sugar stuff.  The swings become a problem because this has direct effects on brain function.  I can confirm that, because extreme blood sugar fluctuations do have a severe impact on managing my mental health.  I also suspect they make me TIRED AF like allll the time, which would make logical sense considering these constant swings throughout every day take a large toll on all bodily systems.

The strategy we came up with and agreed to was that I will go back to eating the EXACT SAME breakfast everyday (1/2 cup of plant-based yogurt, 1/4 cup of berries, supplemented by my standard nuts and seeds).  Plus: a single glass of iced coffee with no more that 1/4 cup of unsweetened almond milk, which also informs the “carb count”/insulin dose of the meal.  She said this would help out with managing sugars the rest of the day and provide some much needed “stability”.  I did loathe this compromise though, because breakfast is my favorite meal of the day and I love a wide variety of breakfast foods lol.  But I am willing to (grudgingly) make this compromise for the greater good!

I had to ask her my burning question - why is my current CGM being discontinued?  I showed her the email I received and she was surprised because she had not gotten this information yet.  We looked it up on the internet together and had a brief discussion about diabetic supply companies/practices.  Based on our brief research, she told me the new CGM is more suited for those using a system closer to a “closed-loop” for diabetic management.  This means, they rolled out the new product and want us all to use it because they assume we are all on insulin pumps as well.  However, I am not.  I prefer to use manual pen injections at this time for insulin delivery throughout the day in order to manage my stress levels/anxiety about medical devices.  This actually led to a wider conversation about STUFF (me: “so, is this just a ‘capitalism’ thing?” her: “Hahaha. Yes.”).  I told her about last year when I reached out to Abbott (my CGM manufacturer) asking why they no longer included standard alcohol prep pads in every CGM kit.  Alcohol pads are *required* when replacing your CGM.  Since those are devices with needles that sit inside you for 14 days in a row, you absolutely need to make sure the area where you apply it is CLEAN AF.  I do usually keep alcohol pads on me in my diabetic kit that is always in my bag, but sometimes they dry up and are useless.  I used to really RELY on those pads being included with every CGM kit.  Essentially, the company told me that they stopped including them to cut their production costs, which was extremely offensive to me (because those guys already make A LOT OF MONEY off of us).  My endo said that it’s cheaper/easier for the company to stop making Libre3 in favor of Libre3Plus.  Then, we discussed how shitty it is that a company that produces diabetic supplies favors their own corporate interests every time, as opposed to the interests of the literal patients they are serving!

Another hot topic we had to address was my “pituitary gland THING”.  Last year, I got an MRI scan of my brain in hopes of finding the causes of my ongoing hand pain.  The results gave no answers on that - but they did show something else that I now have to “monitor” regularly with my endo as well (because pituitary glands are a component of the endocrine system, same as a pancreas is).  What confuses me still about that is that the clinicians performing the MRI scans as well as my PCP referred to it as a “pituitary gland tumor” while my endo refers to it as a “pituitary gland lesion”.  Whatever its actual name is maybe doesn’t matter?  They are quite common in the human population and are usually nothing to worry about.  But, you do have to keep an eye on it, especially when you already deal with another “disruption” to the endocrine system, such as my T1D.  To keep an eye on it - my endo asked me to do a “salivary cortisol test”.  She gave me this kit twice before, but I kept forgetting to do it.  You have to take saliva samples under specific conditions two nights in a row and return it immediately next day to the lab for testing.  I asked her what the expiration on those tests was but she did not know.  She told me to ask the lab clinicians when I ask them to give me another kit for this test.  So I go to the lab and ask for the test.  When they find some and give it to me, I read over the instructions with them and ask the burning question about its expiration.  How long are they good for?  Nobody knew and told me to ask my endo.  I told them that my endo told me to ask THEM.  We all stood there (3 of us) in a circle of confusion.  Finally, one of the clinicians pointed to an expiration date on the tube for the test!  We were still unsure how long the tests were good for after collecting the sample, but at least we had more DATA.  

My second burning question was: the instructions for taking the test specifically state to not collect the saliva sample when your gums are bleeding.  But, due to my advanced gum disease, my gums are always bleeding!  I asked them if this would greatly affect the results of my test.  Again, nobody knew the answer to this and we were all deeply confused.  I asked them: “Should I ask my endo, my PCP, or my dentist this question?” but nobody knew the answer to that as well.  It’s very frustrating when literal questions have no known answers in clinical settings.  We decided I would still do the test, as per instructions, and hope for the best, but be mindful to take the results “with a grain of salt”.

Feeling extremely frazzled by these details plus so many more that are too long to type out, I finally exit the clinic after making my next two follow-up appointments and head to the parking garage.  The kiosk at this garage only takes credit cards.  This became a problem, mainly because I am terrible at managing my finances lol and all my current credit cards are maxxed out and unusable.  I only had my debit card and cash.  The kiosk could not accept my payment.  I tried hard not to panic lol because I felt “trapped”.  I really do loathe going to the Longwood medical area of Boston, probably due to too much past trauma experienced there.  I look around for a parking attendant, but don’t see anyone.  Finally, I find the “garage supervisor office”.  I had been going to this garage for the past 10+ years but never knew this existed!!  There was an actual human there who I could explain my problem to and she accepted my cash payment.  Just a testament to the value of HUMANS being there to help as opposed to only relying on faulty/limited MACHINES. 

On a “bad day”, I would have probably lost my shit 7 times over during the course of those two hours.  But instead, I took it slow.  I gave myself time and space to think, I allowed myself to ask questions, and I forgave the world for not providing me with necessary answers.  When a system is faulty - there is no more logic, you really can’t count on that.  There is no sustaining pattern or routine you can rely on.  You have to accept the frustrations of RANDOMNESS and VARIABILITY resulting from it.  

But also, I was able to regulate myself because a fellow chronically-ill internet friend sent me some soft cat memes before my appointment.  Every time I began to feel overwhelmed, I just thought about that one cat, sitting on top of a box that his cat sibling was in.  Is this “meditation” lol??? IDK words can be useless sometimes.

Then I cried while sitting in confusing rush hour traffic the whole ride home THE END