Losing to Diabetes and Learning from It

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Milestones I’ve experienced in the past week:  receiving a new glasses prescription, acquiring a queen-sized bed, and ending the “Honeymoon Phase” of Type I Diabetes.  Probably.  

I say probably because I can’t actually verify that this is the end.  I remember my doctor telling me that it would most likely be a gradual transition and that I would begin to notice that my usual doses of Humalog just weren’t cutting it.  I would see some of the original symptoms of diabetes creeping back into my life caused by higher blood glucose levels that weren’t kept in check as easily.  Well, friends, I’m there–right there.  

  

The care-free, 100-filled life that I lived just a few short weeks ago. (This is a joke, or at least an oversimplification.)

 

I know that Type I is forever (at least for now).  I know that I have Type I.  And I’ve known this day would come.  I feel fortunate to have been in the Honeymoon Phase for as long as I have been and I’m thankful that I have a visit with my endocrinologist this Friday.  All of these intellectual reflections do nothing for me, though, when I see my meter repeatedly flash numbers in the upper 200s despite my Humalog correction doses.  I’m sure any endocrinologist out there–and many of you, as well–would tell me that the corrections aren’t so good for me and I need to be injecting higher doses with meals.  Try telling yourself that when you have the QwikPen in hand and you’re cranking the dial.  It feels like a death wish to inject more insulin than I’m used to and it’s honestly quite terrifying to think about increasing doses without any exact measurement or ratio.  

This period of harder-to-control blood glucose levels has lasted for just over a week.  I can remember a couple months ago when I had a few days of these same symptoms and it almost took me out, emotionally speaking.  I sunk into a pretty angry phase, feeling like nothing I could do would prevent the highs I would experience on an hourly basis.  On the third day of these roller coaster highs, I decided to take matters into my own hands.  

When I arrived to work on that day, after eating my usual breakfast and following my usual morning routine, I had a BG somewhere in the upper 200s.  I corrected with a unit of Humalog (which previously would have been enough to bring it down into my target range) and waited about an hour.  I checked again and was in the low 200s.  I could feel my heart racing and tears welling up in my eyes.  “This is it,” I thought.  “This is what it’s going to be like for the rest of my life.”  I corrected with another unit of Humalog and got back to my work.  An hour or so later, just before lunch, I checked again and I was in the upper 100s.  At this point, I was just furious.  I was starting to doubt my ability to monitor my diabetes for the rest of my life (as if me not being cut out for this line of work were actually a significant factor in this situation).  I almost doubled my dose for lunch, ate my typical meal, and walked back to my office with a heavy heart.  

While on the phone with a client some time later, I started to feel the familiar weakness in my legs and shakiness in my hands.  I set my meter on my desk–a tell-tale sign to my coworkers that something might be up–and saw my anger finally catch up with me:  42.  I called my go-to coworker and he immediately came into my office to sit across from my desk while I downed glucose tablets and a juice box.  I explained the situation to him with tears in my eyes and I confessed the guilt I felt for stacking (and stacking and stacking) out of anger.  He reminded me that it seemed logical for me to attempt to correct for what I felt were highs and he said it made sense that this transition would not follow a simple set of steps.  The next day, my levels were back to my normal and I moved on with what I thought was a lesson learned.  

 

I couldn’t fake these photos if I wanted to. I was full of 100s back then!

 

 

This past week, unfortunately, I fell victim to the same self-inflicted stacking low.  This time–don’t tell my mom–it was at 1:30 A.M.  Nothing scarier than the old waking-up-sweating-can’t-figure-out-why-you’re-so-hot low.  I reached for the low supplies I keep by my bed, called a friend, and waited it out after plowing my way through two juice boxes and a handful of glucose tablets.  (They don’t call me Emily “The Overcorrector” Patton for nothing.)  I had experienced almost an exact replay of what happened two months ago–highs after corrections–and somehow felt that it would again make sense to keep tossing Humalog into the mix so that I could bring it back down.  It’s shocking to me when I realize how much I allow a number to dictate my actions.  

And here is where I will confess that this time my levels did not settle themselves back into place.  I’m still struggling with these highs.  I broke down and called my doctor on Friday, but the office was closed in observance of Veteran’s Day, so tomorrow’s the day.  Even though I have an appointment on Friday, I can’t go on like this.  I need actual medical advice.  I need to accept that the honeymoon is over.  

One thought keeps swimming through my mind, though, which is the warning that a friend from the Sports and Diabetes Group Northwest issued at our most recent workshop:  flu shots can cause unpredictable high blood glucose levels that last for up to two weeks.  I realized yesterday that I got a flu shot about two weeks ago and I allowed my mind to linger on thoughts of this all being my immune system’s healthy reaction to a foreign substance entering my body.  

Or am I just lying to myself?

Either way, I’m hoping to have some answers sorted out by the end of this week.  I have that phone call to make tomorrow, my CGMS should be arriving by Tuesday, I have my parents coming to visit on Thursday, and I have my final visit for my clinical trial on Friday.  There have to be some answers out there somewhere.  No more experimenting with my pride versus my QwikPen.    

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Comments (14)

  1. Laura Ewalt at

    Emily….you are amazing! This is the kind of thing that others can be inspired by…yes you are facing some tough times but you are FACING them and not just pretending that everything is ok…so great that you lay it down…all of the details about your numbers as well as your thoughts. KEEP WRITING…you are awesome!

  2. Michael Aviad at

    Emily. Sorry to hear about the end of your “honeymoon” (if that is what it is – I get out of control when getting sick or fighting a cold). Just look at it as the end of basic training, where you get to learn how to use your tools at lower levels before being let out into the real (diabetic) world.
    Seriously though, I would suggest cutting out some of the carbs in your diet at least until you have it figured out. 

  3. Michelle S. at

    I am so impressed how you call a friend or tell a coworker… it took me at least 5 years to be able to turn to anyone for help during lows, and even now I would only tell my husband or another family member… it is such a sign of strength to ask for help!  I hope this is from your flu shot and you have more honeymoon left!  Have hope, I need more insulin than i did the first few years but after 12 years I still take very small amounts of Humalog. 

  4. Oh man, I’m sorry to hear that you’ve been having such a rough time recently. I will say that I loved your parenthetical: “as if me not being cut out for this line of work were actually a significant factor in this situation.” SO TRUE. 

    Good luck. Also, it’s okay to cry/beat the shit out of pillows every once in a while.  

  5. Karmel Allison
    Karmel Allison at

    The honeymoon is great, but the marriage is what we got into this for, right? Don’t worry– it’s hard, and it takes lots of work and compromise, but I’ve seen you in action, and I know you’re more than capable. Just remember to hold on tight, pray, and then try to enjoy the ride. And it’s okay to cry sometimes. Especially when it’s raining– like it always is in Seattle– cause then no one can tell anyways.

    And the good news is, it gets better. There are low points, but it becomes part of life, of habit, of protocol. And then it’s just one more of the many complications in life (“Does he like me?” “Am I good at my job?” “Am I doing the right thing?” “What’s my blood sugar?”) Just remember to get hugs frequently :)

  6. Liz F. at

    This situation sounds familiar…Matt had some episodes kind of like that during the summer.  His blood sugar was frequently above 200… one time it was 400, no joke!  And there were a few nights he’d wake up sweaty and hot and have blood sugar in the 50’s.  (No insulin self-correction going on, this was just happening by itself.)  This roller coaster probably lasted about two weeks, but he had a doctor’s appt. coming up soon.  By the time he saw the doctor, things had been pretty much back to normal for about a week.  
    The only thing we can think of is that summer was very stressful for us — we had to move to a summer sublease in Columbus, find a place to live in Minnesota, and find Matt a job.  About the time his blood sugar fluctuation stopped, we had found a place to live, and Matt’s boss had offered to let him telecommute. So maybe it was because of the stress?  I don’t know, whatever the reason, I’m sure this too shall pass for you and you’re smart to seek medical advice.  Hang in there!

  7. Deb at

    You’re doing fantastically.  Don’t worry, we’ve all been there.  I’ve had type 1 for 4 years now and it’s a big learning curve.  I thought I’d take it all in my stride and be well able to control it, but I learned that’s easier said than done.  A couple of things I’ve learned that might help you: 1) High blood sugar levels can make me feel hopeless about my diabetes – i recognise that as a symptom now, not a reflection on my personality!  2) Stacking up on sugar if I’ve had a low will affect my sugar levels for at least a few hours. 3) Having a higher than normal carb dinner throws my figures out for at least a day, even if i get them down to the ideal number 2 hours after my fast acting insulin.  4) Even if my levels are too high occasionally, it will all balance out in the HBA1C so Don’t Panic :)  I have to congratulate you on such a well written post. I’d love to have read something like this when I was finishing up on the Honeymoon stage.  At the time I thought it was just me who found it so difficult with this balancing act.  Good luck!

  8. Emily Patton
    Emily Patton at

    Thank you all so very much for your encouraging words and wise suggestions.  Trust that I am taking them all in.  My numbers actually went back down as of a couple days ago and I’ve been feeling pretty good.  I met with my doctor today and he assured me that this will be an up-then-down-then-up-then-down process.  This is all part of the process, it seems.  I am so thankful for the supportive community I have in each of you!

  9. Amy at

    Hi Emily,

    Wow this post was incredibly inspiring to me tonight.  I am also a newly diagnosed type 1 diabetic (at age 26) and for the past ten months I have allowed myself to feel a false sense of confidence that I have this under control. Like you, I took for granted my constant BGs of 100.  Unfortunately, tonight marks the 4th night in a row where my blood sugar has soared to the upper 200s. I can’t recall ever feeling more frustrated! I’ve steadily increased my insulin (based on instinct, of course, not because I’ve consulted my doctor..) but it feels like it is making NO difference. Where last week I could SMELL humalog and my blood sugar would drop, I am correcting with 2 or 3 units and my blood sugar is hardly moving.  I actually threw away my pens yesterday because I thought maybe I’d left them in the cold and ruined them! (Clearly, I am in denial that this is likely the end of my proverbial “honeymoon” with diabetes)

    Anyways, even more than the sluggish, blurry-vision, foggy-headed feeling that goes along with blood sugars in the 200’s, I think the most frustrating part is knowing that THIS is how it is going to be from now on.  I’ve been so positive about my diagnosis and motivated to tackle it head-on… but this realization that living with diabetes is about to get a lot harder is possibly as hard a pill to swallow as the initial diagnosis :(

    I’ve been crying off and on tonight – just exasperated and embarrassed – and then I read your post and felt comforted.  Thank you.  It helps to know that people are going through the same thing. And that it’s not my fault, or my laziness, or my carelessness, that is causing my sugars to jump all over. I feel inspired to call my doctor first thing tomorrow and insist on being seen sooner rather than later… and to change my attitude from “woe is me” to “ok, this sucks, but let’s do it…” !

    Thank you for the inspiration.  I needed it tonight! :) And good luck.

  10. Emily Patton
    Emily at

    Thanks for your thoughts, Amy!  Would love to talk with you more.  Keep on keepin on!  Trust in the larger picture and trust that things will settle into place.  We are all here to support each other.  Best wishes to you.  

  11. emily at

    hello emily,
    im another t1 emily diagnosed 11 months ago and i am facing what i think is the end of my honeymoon. i have had some out of nowhere highs in the morning and like you, i get that “oh my god, im going to kill myself with this insulin” feeling when i even think of correcting.

    its really hard to accept that this might be the end for real, quite sad, really. thanks so much for sharing, its comforting to know that im not the only one. hope all is going well for you! 

  12. Sana at

    Hi everybody,
    And Emily thanks for your post.
    Would you please tell me how much insulin you use during honeymoon period?

  13. Richie at

    I really feel for you, I was only diagnosed as a Type 1 three months ago after a couple months of feeling like hell, drinking gallons and gallons of liquids per day and having absolutely no saliva in my mouth all while feeling as weak as someone on their death bed.  And about two weeks after getting out of the hospital my honeymoon period started kicking in and my numbers became almost perfect all the time without taking any mealtime insulin (between 70 and 130 almost always unless I loaded up on carbs then it would jump to the high 100s at the highest usually).  And that honeymoon period bliss lasted up until a few days ago where I have been getting numbers in the 200s and even one over 300 and I feel really sad.  I have only been honeymooning for 2 and a half months, and I was hoping I could make it last for over a year, it really is very annoying because the reality of being a type 1 diabetic for the rest of your life really sets in when your honeymoon period ends, I’m actually not sure if mine is quite over yet because this happened a month ago and then my numbers went down again after a couple days of highs, so I’m hopeful my honeymoon period isn’t quite over yet, but the reality is that no matter what I do it IS going to end in the near future (not too near hopefully).  I feel for you and keep up the fight, you have a good attitude and you will be fine, we can’t let diabetes get us down!  Thanks so much for sharing!

  14. Richie at

    Hey guys, I wrote in about 8 months ago that I thought my honeymoon period was over, and thankfully I was wrong and amazingly I am still in a honeymoon period almost a full year after being diagnosed as a type 1.  I had a blood sugar of over 700 when admitted to the hospital (and it was probably much, much higher the days leading up to that), and my honeymoon period started about three weeks after that and up until now.  I am so thankful that I have even had this long of honeymoon, and I am starting to hope that I am an LADA instead of a straight type 1, I was 28 when diagnosed last year and I’m now 29, which is somewhat older of an age for a type 1 diabetic, and a common age for LADAs, if I am in fact LADA I hope my honeymoon period could last for a while longer as LADA’s beta cells are destroyed more slowly than Type 1’s but the fact that I was making almost zero insulin at time of diagnosis leads me to believe I am probably a type 1 who has just had a longer than average honeymoon period!  All of us who have extended honeymoons should just be greatful I guess because a lot of diabetics don’t even get that, the day(s) that my honeymoon period ends will surely be a sad day, but I think taking 10 units of Lantus every night as well as small amounts of humalog at meals where i consume more than 40 carbs has really helped to allow my beta cells to rest and to use the injected insulin, which in turn theoretically extends the honeymoon period.  Best of luck to Emily and all the other diabetics out there, we can beat diabetes!

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