Struggling to Ensure that You Only Strengthen Me


(Hawa) #1

Married to Diabetes since 06/13/17
While I was learning about the intricacies of the pancreas as a first-year medical student, my pancreatic beta cells were being destroyed
This destruction has led me to develop a new relationship with the word Diabetes
Instead of reading about it
Or getting frustrated with the thought of treating a “non-compliant” diabetic
Diabetes and I
Are now one

I have a
Till death do us part relationship with you now
You will be with me through the good times and the bad
And I will have to make compromises for you
This union is nowhere close to sweet

I cried when I first met you
Because I thought I would never have you
You don’t deserve me
Now that I’m stuck with you
I have no choice but to make it work

Four site changes a week, three insulin pump fills a week
Foot exam and eye exam-- every year
Carb count and bolus nearly every meal
Watch out for hypoglycemia!
You want to work out, decrease your basal
Always have a sugary snack
Always have a glucometer handy and
Make sure there are test strips in there
Have back-up infusion sets in case things get frisky :wink:
As much as I prepare, nothing about this relationship is predictable
A low will always catch me after I realize I used my emergency orange juice last week
A spontaneous date night turns into a high I keep giving corrective boluses to undo

Until one has a relationship they did not choose dictate everything they do, they will never understand
My optimism, my jokes will never change the fact that I feel out of control
Beta cells continue to die, insulin demands increase
And well, I am trying to catch up but you change so fast
Though we are now one, I am struggling to ensure that you only strengthen me


(Patti) #2

There really is only one outcome, you will become stronger, more resilient, more empathetic, and more blessed than you ever would have been without it. Some days you won’t see it, but the other days you will be grateful for it


(Loïca) #3

Your writing is so beautiful.
Thank you for sharing with us


(Hawa) #4

I agree Patti-- most days I am overwhelmingly optimistic. And like you said some days I just feel overwhelmed like the day I decided to post this.


(Hawa) #5

Thank you! It felt like a relief to admit for once that I am not always ok.


(Bill) #6

Hawa @FutureDoc2020,

In the early 1980’s I was doing the literature review for my doctoral dissertation in diabetes management… I came across a study where some 20 or so professionals had willingly enrolled to participate in a 21-day-long diabetes management “analogue.” (I’m pulling this up from very old memories so I may get some of the details wrong, so take this with a “grain of salt.”)

The volunteers in the study (all healthy and not diagnosed with T1D) agreed to faithfully perform all of the day-to-day activities recommended for T1D management [i.e., multiple daily injections (the volunteers used saline), strict diet management, regular blood glucose measures (glucose meters had just made it into “almost-daily” use - very expensive!), and record-keeping, etc.].

The results of the “analogue” were, well, startling. According to the rating rules of the study only one volunteer performed their management tasks “okay” (not “well,” just “okay”). Several went into “DKA” that led to comas, others went into DKA that was not as threatening, and many experienced severe hypoglycemic episodes, some of which led to “death.” Now remember, this was just an “analogue” study - volunteers weren’t using insulin nor did they actually experience physical symptoms. They simply had to perform the tasks that people with T1D are asked to perform, and their consistency performing those tasks was “rated” using “scores” that could then be tallied to “define” the adequacy of their performance, and whether their “management” led to “complications.” In essence, they all did a crummy job managing “their” diabetes. Not too surprising, huh?

Well, here’s the “punch line.” The volunteers were the medical staff (physicians, nurses, and other professionals) of a hospital unit that did nothing other than help patients recently diagnosed with diabetes. Now that’s startling! The results of the “analogue” study were humbling to some of the volunteers, and it changed their approach to counseling patients. The others? They just “blew off” the results of the study and went on with how they had been doing things. Heavy sigh.

Welcome to the “club,” Hawa. After more than 60 years wrestling this disorder I can confirm that it is never the same from one day to the next. Your best friend (now days) is an Apple Watch with the timer set for every four hours - when it goes off attend to your diabetes. I’ve been through graduate school, hospital-based internships, and practiced in hospital settings/clinics for many years as a neuropsychologist. Every four hours stop what you are doing and attend to your diabetes needs, whether you think you need to or not. And, of course, when your blood glucose begins to drop call “time out” and manage your hypoglycemia. Just do it!

Good luck to you!

Bill


(Nancy) #7

@FutureDoc2020 Hawa, this is an amazing testement to the life I’ve lived for over 52 years. Perfect. I admire your strength and applaud your vocation. Keep fighting to bend dbx to YOUR will.

In good health,

Nancy


(Diana) #8

Welcome to the ‘club’ - not one that any of us chose to join, but have learned to live with. I appreciated your first comment referencing treating ‘non-compliant’ diabetics. It reminded me of the ‘wisdom’ that I imparted as a young teacher to parents of my students before I had children of my own. Funny how first-hand experience gives a whole new perspective. When first diagnosed, thanks to a young diabetes counselor, I thought my life was ‘over’ - no more sleeping in, no more enjoying going out to eat, keeping a regimented schedule, limiting professional involvement, etc. How wrong I was!!
It was when I decided that diabetes was living with me that everything seemed to fall in place. I raised a family, traveled across the country for work, held leadership positions in professional organizations at the state and national levels, have been married for 45 year and have enjoyed life. It’s all about perspective and balance.
Best wishes as you pursue your career.


(Hawa) #9

Bill-- thank you so much for sharing this. I think it highlights that even the most trained (doctors, nurses) cannot comprehend the commitment of managing T1D. Its demanding. My med school colleagues often think its an easy, just give insulin solution to everything. I appreciate your advice on checking in with my diabetes every 4 h. I actually had hypoglycemia in many situations in my training that would have been prevented if I did that.


(Hawa) #10

@nannimae-- Thank you! Yes, same to you!

@DLK , Perspective and balance. I love that!


(Bill) #11

Hawa, I’ll let you in on three secrets about living with T1D as a professional, well, as a person with T1D in general.

First, and your colleagues will scoff at this, you may have two periods in the year where your insulin need drops dramatically. I have read Dennis’ posts about this; I have posted about this, too. It seems that as winter transitions into spring, and as summer transitions into fall, you “may” begin to experience almost persistent hypoglycemia. If it continues for more than a day-and-a-half it’s time to adjust your basals lower. Some years it doesn’t happen. Some it lasts for two or three days. And others it can last for from ten days to two weeks. It is very unpredictable and, when it happens, you may walk around for a day or two wondering, “Why do I feel so bad?” And then you’ll realize you are “over-insulinized” and you’ll back off on your basals. You’ll begin to feel better within a few hours. Then, as soon as it came on, the effect will disappear and you’ll find yourself staring at 300+s on your glucose meter. When you see two in a row (say one at Noon and one at 4:00 pm) it’s time to raise your basals. Your colleagues won’t believe you at all; after three years or so you’ll be a believer (if you are one of us who experiences this).

A second issue. There will be one time of day when, try as you might, you will be most prone to experience hypoglycemia. For me it’s between 10:30 and 11:00 in the morning. I used to think it was my morning dose of Lente and, years later, UltraLente “unloading” on me. But it has continued since I have been using my pump. Yep! It’s that a.m. corticosteroid thing. Once it is out of my system my insulin need “disappears” for a bit and my blood glucose level drops like a rock. My overnight to morning basals adjust for this and they work pretty well (.35 Unit at midnight to .825 Unit at 7:00 am to .65 at 11:00 am). But you can bet I have my glucose meter in my hands at 11:00 am because I know that time of day is treacherous. The point is, get to know your body and when you are most prone to hypoglycemia (other than during/after exercise). By learning that, you’ll know when to change from “vigilant” to “hypervigilant” during the day.

Finally, there is a tremendous difference in insulin need when you are “on the floors” versus being “in clinic.” When I was on my internship at a V.A. hospital (many years ago) we had a corridor that was over a half mile long. There were days when I walked that corridor end-to-end as many has eight times. And then there were all the other corridors. I often walked ten miles a day when doing a rotation that included that corridor.

Then there were the days that I was stuck in an exam room in the Admissions Office all day. As you can imagine, my insulin need in those two scenarios was very different. And that was in the days I was using multiple separate injections of Lente and Regular insulins (two of Lente and three or four of regular each day).

Here’s the point, your insulin need will likely be very different when you are “on the floors” versus “in clinic.” Be prepared! Keep your Pocket PDR in one pocket of your lab coat, and two tubes of glucose gel in the other pocket. Never ever leave home without two tubes of glucose gel in that pocket! And teach several of your colleagues how to infuse ampules of glucose - you never know when it could be a “neurons saver.”

Best of luck to you!

Bill