Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Saturday, December 1, 2012

Work

Diabetes is winning this week.  It is hammering me.

This week has been yet another good reminder to me that patients can try their hardest, give 200%, and still not achieve the outcomes that physicians have been trained to desire.

On the surface, Jessica has had a "horrible" diabetes week.  She's been in the 200s more than she hasn't.  And, yet, I have had no sleep.  I have worked my ass off trying to get her numbers under control.  She has undergone extra site changes as I have had to rule out failed sites as a cause of these high numbers.  In short, we have put forth extreme effort and have absolutely nothing to show for it.

Patients often drop off logs for physicians to review.  It is so much about numbers.  HgbA1c, LDL, blood pressure, weight.  Yet, physicians can forget what is going on behind these numbers.  Checking blood sugars is work.  Trying to eat correctly is work.  Exercise is work.  Staying up all night multiple nights to try to achieve control is work.  Even "just" remembering to take a pill every night is work.  A patient can work incredibly hard, but a logbook filled with 200s will not reflect this.  Is there any acknowledgement of this work?

Perhaps the patient who seems to have "given up" is just sick of expending so much work and getting so little positive feedback, or seeing no reward of their effort.

Tonight I was tempted just to sleep.  I have had a ridiculously hard week at work, the husband is once again working nights on inpatient, and despite staying up all night I have not been able to get Jess's numbers out of the 200s.  It would be so easy to give up.  After all, living in the 200s won't hurt her much in the short term.  It is so easy to see how this mentality can win.  And, I have knowledge, drive, resources, support.  What about the patient alone, or who can't afford the strips for repeated checks?

We're losing at this number game this week.  It is not due to any lack of work.  In fact I am so completely exhausted and frustrated that I am near tears.  I secretly want to give up for a short while.  I am close to diabetes burnout this week.  We "should" be able to control this.  The basal rates and ISFs "should" follow the rules.  But, she's growing and so they are not.  Human bodies are not perfect little experiments where all factors can be controlled.  I am doing my absolute best, but her body seems to randomly be spitting out growth hormone or cortisol, or some other unmeasurable substance that shoots her blood sugars up.  And, despite rage bolusing, multiple changes to her basal rates, and complete exhaustion on my behalf I am not any closer to achieving blood sugar control then I was three nights ago.

Yet again a good lesson in humility for me.  Patients can work so hard behind the scenes.  It needs to be acknowledged.  Even if HgbA1cs and LDLs, blood pressures, and weights are not "at goal," it does not mean there has not been work.




2 comments:

  1. I am so sorry this is so frustrating (putting it mildly I know) and this is a part of your journey. Remember your efforts ARE making a difference even if the results are not what you want or deserve. You know I am here for you any time of the day. Maybe we need to talk late at night since our days are getting away from us! I love you all! T:)

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  2. This post hit me, Tamara. There's nothing more discouraging than trying harder than hard and not seeing any positive feedback. I think that's part of what makes diabetes so hard to live with sometimes. It literally beats you down little by little.

    What I often marvel at is the strength we have. Look at your hubby, your daughter, and the many others who get up again each day and make a decision to try again to do their best. It's inspiring, isn't it?

    Hang in there!

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