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D-Blog Week: Share and Don't Share.

Share and Don't Share:  Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

"Steffescope."  Yep."I'm sorry," "thank you," and "please" are the thematic statements of every endocrinologist appointment I have. 

"Thank you."  You're great.  You really are.  I've been a patient of yours for years now and your patience for your patients knows no bounds. You're also smart, as you've been dealing with adults with type 1 for a long time, and you rarely view my diabetes as something that happens outside of the context of all the other stuff in my life.  "You don't live in a vacuum," and I always laugh in my head because I picture Henry the Vacuum, and it's a hard mental image to shake. 

You don't give me the stink eye when I tell you I don't have weeks worth of logbooks available, but you do make me own the fact that you need at least two weeks of certain numbers (fastings, before meals, before bed) to make assessments of my blood sugar needs.  Accountability helps, and I at least know what the bare minimum data points that you need are.  And because of your prowess when it comes to type 1 diabetes and pregnancy (and all of the assorted fun-and-games that can crop up in tandem), I was confident in trusting you to help bring my dream of motherhood to a healthy fruition

"I'm sorry."  Even though I cry in your office almost every time, you don't make me feel creepy about it.  I don't know what it is - pent up anxiety?  emotions that I keep bottled becoming uncorked when your office door shuts? - but it's a knee-jerk response.  My emotional response to diabetes seems to rear its head when we're talking about the basic mechanics, because I think I'm frustrated at the fact that being "compliant" doesn't always lead to awesome lab work results.  Or peace. Or more sleep.  Or any guaranteed awesome. 

And I'm also sorry for being a sometimes scatterbrained patient.  I know the point of my being there is to review numbers, and make adjustments to medications, etc. and I do feel horrible when I don't come armed with all the information you need to help me make sense of diabetes.  However, our relationship is a two-way one, and even though we have a good repertoire, there are things we can work on.

"Please."  Please don't think that my scattered records equal out to apathy about day-to-day diabetes management.  (I test my blood sugar, but I don't always log it.  And I take my insulin, even though I'm not always plotting the doses on a spreadsheet.)  Please find a way for your office - the insurance company? - to reimburse you for reviewing CGM data.  Please don't leave me waiting in your office for over an hour, finally starting a 10 am appointment at 11:30 am - I'm supposed to be 15 minutes early, but it's okay if you're 90 minutes late?  Please ask your office staff to respect the fact that I may not know all the details of what is and isn't covered by my insurance, and please encourage them to treat me respectfully when I call to make appointments/ask a question.  Please don't judge me for changing my lancet every mumble mumble.  And please, for the love of God, find some way to increase your availability.  I am scheduling my appointments six months out and in the times when you need to reschedule/I need to reschedule, it makes for horrible rescheduling.

Doctor/patient relationships are just that:  relationships.  I think (hope?) ours is good.  I am confident I am getting good care from you, and I hope you feel that I'm a patient worth dedicating your time to.  Type 1 diabetes takes a fair amount of work to manage, and I'm thankful to have you on my team. 

Now can I petition for a coffee machine in your waiting room?

Comments

I can't find the like button (I'm a klutz at a lot of internet things). I just want to let you know that I like this post a lot.

A coffee machine in the waiting room would be amazing (and profitable)! My hospital has a Starbucks on the campus but it's way too far away from my endo's office :(

This...

"Even though I cry in your office almost every time, you don't make me feel creepy about it. I don't know what it is - pent up anxiety? emotions that I keep bottled becoming uncorked when your office door shuts? - but it's a knee-jerk response."

Man. Yes!!!! I understand!!!! YES!!!!!!

OMG, I cry at my appointments too! I'm so glad to hear someone else does it.

It's like if D's running as part of my life I'm OK but when I have to sit down and think of the details it's too overwhelming.

I try to psych myself up for appointments and tell myself I won't cry but, always, at the end he'll stop and say "Is there anything else?" TEARS, that's what else! Or if he asks me how my son is, TEARS! Especially now that my son has entered CFRD. Too much medical stuff melts my brain.

I can SO relate to all this, especially since I had my 3 month checkup appointment this morning! My Dr's office has been slowly getting better at keeping a good schedule, and I was in and out in under an hour this morning (One time I was there for THREE HOURS waiting, and about lost my mind.) But their availability kills me - I can never reschedule or it will be an added 3 months before they could fit me in again :-(

I've cried on my doc too. Poor guy, he wasn't quite sure what to do but he just listened and gave me a pep talk saying he understood. Just to keep trying, that's all he's asking for.

Brilliant essay i loved it,Yes true a coffee machine should be there and mandatory addition of furniture,But some endo do think they're gods and not by you or leave you from some off them for being late for a appointment.The other can be the office staff also.

I promise my endo to always bring "complete" logs but only because I don't do any of the work. My previous endos always used the MiniMed Carelink and now when I call for an appointment I make sure they use Diasend. They wouldn't get one number if I had to log it separately!

Great post, Kerri. I'd vote for a full fledged soda fountain bar. :-)

Yes, yes, yes!!! I had a meltdown at my last appt and my doc really had no idea what to do. However, he referred me to an amazing nurse educator who spent the time I needed to review all the numbers and make sense of what I think is gobbledy-gook. And I promised to get new meters, so I can download all my info.

I can definitley relate. Once I had to ask for glucose tabs because my appointemnt got pushed 2 hours late into dinner time. Oh and my endo wears a bow tie too.

There must just be a universal shortage of endocrinologists. I am having the dickens of a time being happy with my daughter's care. I like the doc fine, actually, but she practices out of an enormous hospital clinic, and dealing with the giant staff just makes me feel like a name on a list.

Seriously, just cried in my Dr.'s office yesterday. Thanks for making me feel not so alone.

I'm so relieved to see so many other cryers. I had an endo ask if my husband or employer was abusing me once when I started crying. Nope. Just pent up guilt and frustration.

Okay, this makes me want to come to your next appointment with you and hug you when you cry. And then take you out for a huge coffee!!

Dear Kerri (& SUM readers),

Though I am not your doctor or endo, I AM a doctor and endo & wanted to respond to some of your thoughts.

First and foremost, you're welcome. More importantly thank YOU for not shouting loudly as you exit the visit "this doc has no clue what diabetes is like." Try as we might, most of my colleagues will never get that "insider" peek I to life with diabetes. For that reason, the non-afflicted physicians spend a lot of time fretting about being frauds. No they aren't frauds. They have more understanding about diabetes throu education & empathy than other fields. However. Not living with the disease puts them at a disadvantage. You as patients must recognize this - there is a very good chance that you understand your diabetes as well, if not better than your endo. Thank YOU for teaching us about how it is to live with the disease, about your personal obstacles and triumphs. It helps us!

Second, never apologize unless you did the exact opposite of the recommendations we gave you at the last visit & don't have a reasonable excuse (and hey...I'm beyond reasomable). Simply bringing in a glucmeter is more than we can expect. I'd you submit a CGM for download, you are automatically ranked high prior to the visit bc young have the foresight to test 288 times per day. Well done.

Also please know that many of my patients cry & most are scatterbrained when they see me. I know my patients aren't incoherent at baseline. It's stressful seeing me. You feel put on trial for some reason.
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Finally, realize that just like you, I have a lot going on and may not be right on time. I like to give each patient the amount of time they need (not deserve). Please don't be offended if you have to wait. It's likely that I have another patient (like you) who needs a bot of additional help. The next time you need a it extra, I'll give you the extra time and irk the others.

Please understand that my schedule books up and so when you make that appointment, make SURE you can commit to it. There is no greater affront than no-showing an appointment.

Finally realize that you are there to get your insulin tut rated, labs ordered, but when it comes down to it, the diabetes management is in your hands. Help your doctors understand the human perspective and listen if they have good advice. If you don't agreed consider a 2nd opinion. A good endo you trust is worth her/his weight in gold.

And I'd you come see me....no need t waste time teaching me the labor I'd glycemic control. I am the lucky gal who gets to take care of your diabetes every day and my own T1D 24-7. My edge in medicine ;-)

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