Monday, January 3, 2011

Diabetes Burnout and Re-igniting The Spark

I’ve been suffering from diabetes burnout like many in the DOC or maybe it's a combo of diabetes burnout and burnout in general. But know that I’m not alone.

I wanted to write this post immediately after my December 10th eye appointment, but I needed to marinate on the info for a bit and ingest it for myself.

Then,posts started to appear about the reality of diabetes burnout, (and yes, I've only linked to 7, so my apologies in advance if I haven't linked to yours) but I still wanted to marinate for a bit.

And I decided the first Monday of 2011 would be my time to write about the subject.

So, lets start at the very beginning.

A few months back, I received a phone call from my Eye Specialist’s office at Wills Eye Hospital. I knew my appointment was in December, so I had no clue as to why they were calling.

Office: Kelly Kunik?

Me: Guilty!

Office: Ohhhh, hi. This is Dr. M’s office.

Me: Hi! I thought my appointment was in December?

Office: It is - We have some sad news. Dr. M unexpectedly passed away two weeks ago.

Me: OH, NO! HOW?

The office was tight lipped on the HOW & wanted to know if I was interested in seeing one of his partners. I was and I passed along my condolences to his family.

I hung up the phone and started to cry. Dr. M and I had a rocky start because we met under such extreme circumstances.

But we spent a lot of time together because of the 1 in a million thing and I learned that Dr. M was a gentle & caring man who was perplexed and sad about my 1 in a million experience. With each visit,he grew more personable, compassionate, and positive. He calmed me down and understood my fears, and together we maneuvered through the 1 in a million shit storm and got through it as a team.

He listened to my fears and concerns and he was just as elated as I was when it was confirmed that my 1 in a million experience was not diabetes related.

And at the end of each visit, he never missed the opportunity to tell me so.

The morning of my December appointment, I woke up with a rare, crazy low at 3:30 a.m.

One of those lows that leave you sweating, shaking & engulfing any food you can shovel down your throat because your so afraid of passing out.

The kind of low that leaves you with a 6:30 a.m. blood sugar of 280.

My appointment was for 8:30 and I was freaking out!

I took a correction bolus and prayed that my blood sugar would return to an acceptable level by the time my eyes were dilated.

I walked in the office & once again noticed that I was the youngest person in there.

I paid my co-pay, sat down and tested. 172. YES!

I was called into the back room where one of the med techs dilated my eyes and asked a series of questions.

What was your last A1C? 7.4

Why aren’t you in the 6’s anymore? I’m not really sure.

Most likely a lot of different things combined. Diabetes is a FULL TIME J-O-B.

What was your blood sugar at breakfast? 280, but I had an extreme low at 3:30 and over treated and now I’m 172.

I never judge patients blood sugars. Any flashes/floaters?

Some floaters every now & then but no more flashing electric green flashes.

What do you see out of the damaged eye?

It’s hard to explain, bits & pieces in the corner, a bit in the center- it’s really hard to explain.

There was the battery of tests that required me of covering one eye at a time &reading the charts, follow the techs fingers, etc.

The Good eye was 20/20 with my glasses on. The bad eye was not.

They sat me in the hallway and then I was called into the Dr’s office and I waited.

Finally, Dr. X walked in.

Dr. X: Hi…. Oh my god, your so young!!

Me: Did you not read my chart?

Dr. X: Well I guess I didn’t read all of it. I saw diabetic for 30+ years and NON Diabetes related Occular occlusion and I just assumed you were older.

Me: Never assume anything AND read patients charts. Maybe it wasn’t the nicest thing to say, but I was pissed!!

He made me explain the whole non diabetes related, ocular occlusion thing and then he started shinning ungodly bright lights in my eyes and talking to his assistant in words I didn’t entirely understand.

He wasn’t positive like Dr. M, who always said that my 1 in a mill eye was looking better and healthy and pink.

Dr. X made no bones about calling the inner workings of the eye in descriptions that just made me feel withered and beaten up.

Then it was on to the left eye. Which he described in glowing terms, and I breathed a sigh of relief. BUT.... I breathed it to soon.

Dr X: Eye in very good condition overall - with the exception of two,tiny pinhole hemorrhages……

Me: WHAT!!!

Dr. X: Let me finish my notes!!

But I lost it after that, I started crying and I couldn’t stop.

Me: You don’t understand, if anything happens to this eye it I’m screwed!!

Dr. X: CALM DOWN! Look, I’m not surprised; you’ve had diabetes for 33 years, I'm surprised you've actually avoided this issue until now.

This is more normal than you think and not as horrible as your perceiving - RELAX.

Look, you’ve had a year where your A1C has been 7.3. We need to get it back in the 6’s - these might actually self correct.

We can’t touch your eyes with just 2 little hemorrhages - that would actually cause

more damage than the hemorrhages themselves. But we do have to keep an eye on them.

They weren’t even there at your last visit - They’re relatively new.

I see that your A1c’s used to be in the 6’s – “used to” being the operative words.

Me: Gee, I don’t know? Maybe the whole stress of the 1 in million thing, which just totally blew, and continues to blow my mind whenever I really think about it.

Excuse me Dr., but I was bascially thrown through the shit wringer from a

non-diabetes related,1 in a million, universal eye fuck up and it stressed me out!

Which, in turn caused me to just feel so overwhelmed with the whole diabetes thing!

I test, and I test often - Living with diabetes is second nature to me.

I work so damn hard every day regarding my diabetes - but I get tired sometimes!!

I know I need to exercise more, I know that when I used to workout daily my A1C’s were golden.

Then my Dr. dies and his replacement doesn’t even take the time to read my chart,

wouldn't you be stressed?

You know, Doc, I write a blog about living with diabetes, it’s a big part of my life.

And honestly I just feel like a hypocrite right now. A scared, tired, diabetes hypocrite failure, but a hypocrite nonetheless!

Dr. X: Look, make an appointment for 6 months and get your A1C back in the 6’s and lets see what happens.

Me: No, I want an appointment in 3 months, not 6 months!

Dr X: OK, fine. 3 months it is. Kelly, Calm down, work on your A1c and relax!

Me: I will – and Doc, I REALLY hope you read the rest of your new patients files more carefully.

And I walked out without looking back.

I made an appointment for 3 months and went to my car.

It was almost 10 a.m. and I had to get to work - I was already late.

As I was driving tears, started to role down my face again and I said the following words out loud:


And for some reason, I felt better. ANd then I decided that I was going to get my A1C where it needed to be. I'd done it before, I could do it again - Maybe self correction was possible.

Or, maybe those two tiny pinhole hemorrhages would stay so tiny - To tiny to have babies and become something more.

And then I started to think about the diabetes on-line community & how I'd be more stressed out if I wasn’t part of the community. And again, I felt a lot better.

And I wanted to talk about it with you guys, but I didn’t quite know how or when.

So for the next couple of weeks I sat on the info and made the decision to write about it on January 3rd - my first official post of 2011. Why?

  1. I want to be honest with you
  2. Diabetes blogging is about the diabetes of it ALL
  3. I knew that by telling you what happened and my plan to reignite my diabetes flame that sparks a better A1C result, there’s a better chance that I actually will do what I set out to
  4. I'm not alone in my diabetes - THANK GOD.


Scott Strange said...

Hugs, amiga!

sugabetic said...

I'm with ya, k2. I know you've had D longer than I have, but it's a pain in the ass I wish we all didn't have to deal with. I let my d-control slip from D-burnout in October/beginning of November and my a1c went up too. Bad timing with the becoming pregnant and all.
Just do what you did - scream about it sometimes and relieve some of that tension. I still say we need to work on a D punching bag tho. ;-)
Take care. ((((HUGS))))

Martin Wood said...

I agree, the DOC provides such great support, both with D goes right and when it goes wrong. Just knowing we're not alone, that there is someone else who is going or has gone through the same BS that we are, and understands. And even from those who haven't, they support us as well. It's a beautiful thing!

Going to the eye doc is one of my 2011 resolutions, because I have been procrastinating, and that needs to change. I put it off like one of King Henry's wives puts off a trip to the guillotine. But, it's got to be done, and I just hope I can find a doc that won't judge and can talk me off the ledge...I mean, ocular examination chair.

Penny said...

Oh Kel you are So not alone in this journey. You have the faith and courage and bravery of a million souls, big and little, all behind you. Cheering you on to a great A1C and tighter control, I know you can do it. You are amazing and wonderful and a diazon to be reckoned with. Oh and we love you tremendously.

carol said...

Yes, burnout abounds. We balance "having a life" with "living well with diabetes" and sometimes the pendulum swings. I don't blame you for going off on the new Dr. Sensitivity (not).

I'm right there with last A1C was 7.0...up from the 6.3~6.6 range I've been in for the past several years. I'm betting it would have been even higher at the Nov. endoc appt I cancelled.

So here's to a new year, and pulling that pendulum back the other way a tad. I say pulling because D related goals tend to drive me batty. I'm with you on the exercise...goals related to that tend to pull the D along AND maintain sanity.

Kelly Rawlings said...

Thanks for sharing and being honest!

Doctors don't really know how A1Cs, fluctuating levels, stress, etc., affect our diabetes eyes. It's really easy to blame the A1C. But that's not the entire picture and it's darn hard to be a major organ.

Sure, under 7 is likely better than over 7. But beating yourself up for shoulda-couldas is a waste of your smarts, humor, and sparkling good looks!

I think instead of the patient having to go through all the work of finding a competent, compassionate doctor, it should be like an elevator pitch. You, the patient, are in charge. Various physicians have 2 minutes to wow you with their medical knowledge, clinical experience, and "bedside" manner and you get to pick the best. And they don't charge you for this service!

Leighann of D-Mom Blog said...

You are not alone at all!

We worked so hard and got Q's A1c to come down 0.9 last summer. And then at her appt in Dec it was right back up where it started. I felt so deflated. Like all that work was for naught.

But I'm picking myself up from my bootstraps and I'm going to try to get us back on track with a couple of changes our endo suggested.

Just when I think I know what I'm doing, diabetes throws me for another loop!

We'll all get through this...together!

meanderings said...

No, you're not alone. None of are, thank God.
I'm perplexed by the eye doctor's supposed expertise on A1c's.
I'm sorry you lost the eye doctor who was so supportive.
And yeah, hugs!

Sysy said...

I'll be honest with you, I'm scared for you and scared for me. I'm grateful for your words, even though they make me want to cry, because they are real and powerful. Right now I'm testing...well, just because maybe I should. Wish I had something better to say. I'm just wishing the best for all of us... Oh and I'm gonna go to the gym tonight, something I've skipped for the past two weeks. Thanks for your post.

Kim said...

I'm sending a unicorn over right away. Be ready for some major glitter clean-up: I fed him broccoli.

(In all seriousness - that sucks; all of it. Glad we can all be here to help each other through this kind of crap. It helps!)

Windy said...

Ugh. Big freakin cyber hug to you, K2. :) Glad we're here to support one another too.

Bob Pedersen said...

I'm just in awe of your strength. It's an honor to know you, even if only electronically.

Alexis of Justices Misbehaving Pancreas said...

((((hugs))))) first. So sorry about your doc passing and the new one being a -----. So easy to ask why arent your #s this or that? They have no idea. Really they dont! Youre not alone. Thank you for your courage to share with us.

Reyna said...

Ok, first off you are amazing and we appreciate your honesty. I need it. Everyone needs it. It is the only way for all of us to know we are normal (yes, I use the term loosely when using it to describe the DOC :).


God! (maybe I shouldn't say that on a a commentor) but...I have hit a whole new level of realizing, or like actually thinking of the whole reason I have been working so damn hard for Joe as his pancreas...between your post...and Elizabeth's post a few weeks ago... and Rachael's health at Pumpsley and Me...and some recent research I was doing for a post about Joe and his is overwhelming. The complications. I have just been plugging along for years...high -> bolus, low -> sugar, weigh/measure carbs -> bolus, high -> bolus...the never-ending-ness of it all. I have kept my head buried in the sand like an ostrich, not acknowledging why. Why we do what we are doing. It is too much to wrap my head around.


Karen said...

You absolutely are not alone. And you absolutely can get your A1C back down into the 6s. I know those little eye bleed bastards are so f'ing scary - when my eye doctor found one I freaked out but good!!! That was about three years ago. We do a recheck every six months but so far things have either improved or held steady. So I'm much less freaked than I was - and I hope you will be too. As long as we keep on top of it and make sure everything holds steady, we will be just fine!! {{{hugs}}}

Michael Hoskins said...

The simple fact that I'm so not alone in echoing my thoughts here is evidence that you're an incredible and influential and inspirational part of this community. A1C and everything else aside. I'll second (or 3rd to the D-Math power) that docs like this need to calm the fructose down and eat some fruit. That even by "not judging" us and our management that their tones and sensitivity do just that. Especially in such tragic circumstances such as losing Dr. M. If nothing else, it's called bedside manner and tact. Oh well. We're here, for the good and bad. Thanks for being honest and open and always worth-reading. My best your way. We're all a part of holding each other accountable and helping in each other's health, indirectly and otherwise. AARRG, new eye doc. We be hoisten our colors!

Laura said...

OMG!! I am crying for you right now! As a mama bear I just want to give you a big mama bear hug!!

I'm so sorry for the passing of your doctor, that the CRAPTASTIC new doctor didn't read your chart or even act like he gave a crap!!

We are all here supporting you and cheering you on. You are such an inspiration to me -- please let me know if there is anything I can do for you!!

Thinking of you, Sweet Friend!!

PS - thank you for your honesty and openness! That's what I love about you!

Renata said...

Kelly when I read this earlier today I had to walk away from it half way through. I felt like I was sitting with you and just wanted to reach through the screen and hug you. I know you are one tough cookie and I have always admired how you put things out there and say what most of us only think but aren't brave enough to mutter. I know you are reaching out for our support and you know the DOC is there for you 110%. However, by your posting this it shows all of us how much you are there for the DOC. Much Love Kelly. Much Love.

Hannah McD said...

Lady, you know I love you. And I know what it's like to deal with ass-tastic doctors. I'm pretty burned myself, but I assure you that reading things like this have inspired me to suck it up and find a new endo this year as well as going to the eye doc for the first time in...3 years?

It can't wait anymore. But this doesn't mean I'm not going to keep procrastinating. Blah.