Wednesday, December 30, 2015

Type One Diabetes - Constant Lessons Learned

I've got a year and a half under my belt living with type one diabetes and I am still constantly making mistakes and learning lessons every single day it seems.  And, I don't expect to perfect anything anytime soon...or ever.  I'm not sure that type one diabetes can ever really be "perfected" anyways because sometimes no matter what you do or how closely you stick to your usual "formula" for managing it, diabetes sometimes decides to say "NOPE, I think today I will just not make any sense or respond to anything you try to do to control me".
The things I do have control over however, I still managed to mess up.  I recently went on a trip to New York for the first time and then flew straight from there to my hometown of Santa Barbara after so I was away from my home in Berkeley for about two weeks.  I thought I did a great job packing extra pump and Dexcom supplies and brought two vials of insulin with me to be safe but then on Saturday night in NY I ripped out my pump site ready to change to a new one only to realize I forgot my insets!  Without the insets (the thing I insert into my belly with the tube inside of me that then connects with the tubing to my pump) all the supplies I did remember to bring were completely useless.
I went the night without any insulin (and thus without any food) and headed to the pharmacy first thing in the morning to pick up insulin pens to use for the rest of my time in NY since I would not be able to get any insets until I spoke with my pump company Monday.  But, since I hadn't used insulin pens in over a year my prescription was expired so I had to walk to urgent care (...which didn't take my insurance and ended up costing me an arm and a leg) where I was met by a nurse who gave me the classic ignorant "diabetes, oh that's too bad, you're so skinny too" line before finally seeing a doctor to get a new rx.  Then back at the pharmacy they didn't even have any of the Novolog insulin pens in, I grabbed some old school syringes (since I had my vial of Novolog) just so I could get my blood sugar down below 200 and eat breakfast.  Finally at another pharmacy in Manhattan I was able to get the insulin pens I needed and resume semi-functioning like a human again.
Traveling with type one diabetes lesson learned (the hard way):  Always travel with ALL pump supplies (at least double or triple what you need), AND bring back up insulin delivery methods in case your pump fails or you forget something important like I did.  Also, make sure all prescriptions (even for insulin pens!) are always updated and current.
Second and another important lesson I don't know why I have not learned yet - always, always carry sugar with me at all times!  There were a handful of times throughout NY (...and on the bus to Boston...and on the plane ride home) that I ended up having a really bad low and had no sugar with me so I ended up in a quiet panic trying to find some emergency sugar.  It is scary to be stuck somewhere slowly losing the ability to function.  When I got to Santa Barbara I was getting some work done from my computer at a coffee shop, started feeling nauseous and nearly passed out before finally checking my Dexcom and my blood sugar to find I was at the second lowest I've ever been - 25mg/dl - severe hypoglycemia.  Thankfully I had some candy with me this time and quickly found a ride home to eat a meal and get my bg back up.
One of the hard parts about this mess and about T1D in general: Feeling like a burden to others I am around.  When I was in NY for example or, wherever else I go when I am with other people I try my best to be as "normal"as possible.  But, with constant blood sugar checks and many times finding myself unable to help becoming quiet, tired, or sick from either a high or low, I find myself overwhelmed with the need to apologize because it feels like I am just a complete mess to be around.  When plans get interrupted because I am low and don't have sugar with me, when I am feeling like I got run over by a train and can't carry on a conversation, or when nothing seems to be working to control my numbers and I feel completely defeated by diabetes and can't decide whether I want to burst into tears or start screaming - all of this is hard to feel as it is and even harder when I am around others.  And while most days my T1D is manageable, I really do wish my pancreas wasn't broken because though we get used to all this crap because we have to, it never becomes "okay".  Yes I am thankful for all the tools to help manage T1D and yes it certainly could be much worse.  And, while I don't want attention nor worry or pity, the chaos and pain of living with this disease is still very real.  I try my best to put up a strong fight and kick type one diabetes in the ass but sometimes it knocks me down, sometimes it is a brutal struggle.  And if you know me in any capacity - if we are friends or lovers or just strangers next to each other somewhere out there in the world, there will be times when I thrive, when I will seem as "normal" and healthy as the next gal.  But, there will also be times when I am struggling with this disease and I am working on being "sorry, not sorry" about that and getting over this constant feeling I have of needing to apologize when things go a bit haywire - when I struggle because these struggles are just as big a part of T1D as the victories are, this I am learning.

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