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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16 Comments on "Losing to Diabetes and Learning from It"

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Aysha

Wow… Thanks for this story, I’m also a type 1 diabetic, going through the same thing. I’ll admit I’ve been struggling seeing all the highs enough to skip testing during the day. It has made me want to cry, and breakdown, right now there is nothing we can do except what our doctor tells us. Thanks so much for telling all of us your story!

Kimberley Rose
Emily, I am currently going through the same exact thing. I was diagnosed on November 14th (crazy because that’s the day you wrote this, and today marks the 6 month anniversary of me finding out) I was reading this article with tears in my eyes. It’s amazing how something you wrote about 3 1/2 years ago would help me today. I just went to my endocrinologist and found out my A1C’s were down from 12.6 to 6.6! I started the pump in February, and it has been a lifesaver, but about 3 weeks ago I got an ear infection. My… Read more »
Richie
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… Read more »
Richie
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… Read more »
Sana

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

emily

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! 

Amy
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… Read more »
Deb
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… Read more »
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