Thursday, July 24, 2014

Because Sometimes Diabetes Is Hard & You Have To Let It All Out.

Yesterday sucked - And then it didn't. Here's what happened & I hope you can relate!
“You know you’re A1c is 8.2,” said the attending Fellow (who looked like she was maybe 15 and was extremely polite,) as she went through the standard questions so should could prep Dr. J.
Me: NO, I DIDN'T. I expected it to be in the mid sevens, but not 8.2.
And my heart sank into my the pit of my stomach and I kept looking down at the floor. 
I explained about my recent cortisone shot for tendinitis and my crazy insulin requirements over the past few weeks - And how that ironically, my numbers had been more study with the cortisone than pre-cortisone  - because I'd been tracking and adjusting my temporary basal rates accordingly. 
I knew the attending was trying her best, but I just wanted to talk with Dr. J.
She left the room to grab Dr. J and I posted the following on Facebook and tried to stay calm.

Endo apt running an hour behind schedule because of course. And I don't even what to talk about my a1c.#diabetesburnout #ImnotgonnacryImnotgonnacryImnotgonnacry

I took some deep breathes and practiced my yoga breathing. 
I looked up, tried to stay centered and stared at the florescent lights overhead. 
I hate florescent lights. 

There was a light knock at the door and in walk Dr. J, followed by the Fellow.
He extended his hand and when I reached out to take it, he clasped both his hands around mine and said: Kelly, how are you doing? What’s going on? We need to get to the route of your a1c. The rest of your labs are great and we are going to discuss them, but you’ve gone up a point and we need to know why. I’ve tracked down Cheryl (my CDE and his right hand,) and she’s going to come in and yell at you.

And then my face fell and immediately he smiled and said: NO, she’s not going to yell at you, nobody is going to yell at you - I’m joking. It’s OK, Kelly. 
We are going to track your trends together and everything’s going to be OK. 

At that would be when my CDE Cheryl walked in and we hugged one another tight. 
Then in tandem Dr. J & Cheryl asked me what was going on in my head. 

Me: I don't know...... I'm tired. I’m just really tired. I’m tired of tendinitis and of always having to work at “this.” 
I’m just tired. I’m OK, I’m just feeling a little burned out.
Almost 37 years and sometimes it gets to me. I’m just...tired. 
My voice started to crack as I was talking - I could feel my face starting to get red as I tried my best to blink back the tears. 

But saying it out loud felt good.

Cheryl looked me in the eye, patted my arm and said: Of course you're burned out - how could you not be? I sent you the email a few weeks ago about our Pump Support Group Dinner next week. Kelly, I want to buy you dinner, I want you to come. 
I know it’s a hike but I’d love to have you there.

ME: O.K. 
And I looked at Dr. J and Cheryl, who were both looking back at me with love; concern, understanding and compassion.....and I felt like a total shithead. 
I felt like I’d disappointed them - and my community - and myself.
Dr. J: When the cortisone’s out of your system - probably next week, we can start tracking your trends and we can tweak what needs to be adjusted. 
The rest of your labs are beautiful. Kidneys are fine, cholesterol is beautiful, Vitamin D is 35 up from 14 last time. That’s awesome!

Me: What about my thyroid? 

 Dr. J. Totally normal. Your thyroid numbers even better than last time! We just need to work on your A1c. It would be much easier if you had a CGM. 

Me: Yeah, I know. 
Dr. J: We will figure this out. Now, can I get you some insulin samples? 
Me: YES. 
And that’s what he did. He went out of the room and came back with a bag of insulin for me. 
After that we said our goodbyes, I scheduled my next appointment for October, got my parking ticking validated and hightailed it out of there as fast as I could. 
I could feel my eyes starting to fill up again in the elevator - but I kept it together until I got to my car. 
By the time I drove out of the parking garage, tears were streaming down my face and I was full on Oprah  "ugly cry,” mode.
And in my head I was like: How could I have let this happen? Jesus, I’m a Diabetes Advocate and a Diabetes Blogger - I’m all about empowering people and I let my A1C get up to 8.2 -WTF!!
I wracked my brain trying to remember the last time my a1c was 8 or above  - and I couldn't remember... maybe 18 years ago? 
I approached the Walt Whitman Bridge and it was a parking lot. 
As I sat stuck there, stuck on the middle of the bridge in rush hour traffic that wouldn’t budge, I thought about everything. 
I thought about my parents and my sister and how a woman in the waiting room today reminded me of her. 
Not because she looked like her, because she didn’t. But she reminded me of Debbie because she was young, in a wheelchair and her skin looked gray... and I knew why she was there. 
She was there for dialysis and it broke my heart - And it scared the shit out of me. 
And I shed tears for that woman - a lot of them.
I thought about how I had two of the finest Diabetes Mechanics (Dr. J and Cheryl,) on the planet; how I was part of a community and damn grateful for everyone in the DOC and how I knew for a fact that I wasn’t alone - But still felt alone sometimes. 
I thought about perfection and how impossible it is to achieve and maintain in life....and life with diabetes. 
Because diabetes, much like life, always changes the rules just when you think you’ve nailed it. 
And that you can do everything right and still not get the numbers you want. 
I thought about curve balls and how we are always trying to catch, dodge, and or be prepared for them with diabetes - And sometimes all that catching, dodging, and being prepared is fucking exhausting. 
And how I’d much rather dodge the ball and the wrenches than deal with diabetes curveballs. 
Sidebar: See what I did there? 

And then “Fix You,” by Cold Play came on the radio and as I listened to the lyrics, I lost it even more.

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you
And I continued crying in my car, and in the parking lot that is The Walt Whitman Bridge at rush hour. 

Except it was no longer the “I feel sorry for me,” kind of cry that it had started out as. 
No, it was more a healing kind of cry that was much needed. 

And then I said out loud:

I am not broken. 
My pancreas is, but I’m not. 
I may need a diabetes tune-up and I may be tired, but I’m not down for the count because of diabetes - or life. 
I refuse to be stuck in reverse - I'm moving forward - Fuck the curveballs - and the wrenches. 

And that would be when the cars in-front of me started to slowly move and inch their way towards the Jersey side. 

The good tears flowed almost the whole ride home - Until the rush hour tunes went all “old school” and Doug E. Fresh, Slick Rick & The Get Fresh Crew’s  live version of 'The Show," came on the radio. And that would be the exact moment I started singing at the top of my lungs:
Well tonight, on this very mic you're about to hear
{We swear, the best damn rappers of the year
So, cheerio, scream bravo}
Also, if you didn't know this is called The Show!

I sang along to the whole song and every song after that. 
And when I finally made it home I was greeted to amazing support via, texts, twitter & Facebook from my tribe. And I felt so much better. 

Diabetes is hard -  Even when you’ve been doing it for over 30 years. 
Change is hard - even when it’s for the better. 
Crying is OK - Actually, it's more than OK.

Having a community to support you both online and off and a professional diabetes pit-crew who understands and wants to help.....That's not only priceless - it makes all the difference~ 


BBird said...

Doing a little happy dance for your tears turning to catharsis and the tribe you have to support you.

Alecia said...

I would have either imploded or exploded many, many years ago if I succeeded in holding back tears (although that doesn't mean I didn't try). I would also like to point out that you would have to be a true robot (not just the pancreatic kind) to be a little upset and NOT sob to that Coldplay song. Seriously. I LOVE and adore your pick-yourself-up and forge-ahead attitude Kelly... and I have from the very first time I read your blog. Thanks for sharing and much love! xoxo

Karen said...

Sending a huge hug your way!! You've totally got this!

Minnesota Nice said...

Oh Kelly. I know the drill.
I am currently in outpatient treatment for binge eating disorder at the Melrose Institute here in town, one of the few places in the country that (supposedly......) has a specific program for type 1's.
It is freaking agonizing and nobody gets it. Not the poker-faced, ice queen therapist, not the bouncy, perky dietician, and even the experienced CDE nurse is starting to hassle me. No support, no encouragement, no validation. All for a huge out of pocket co-pay.
The only thing we can do is trust that tomorrow will be better. And, if not tomorrow, then the day after.

Lora said...

You're allowed to be tired, Diabetes is a bitch!! And part of being an advocate and a voice in the community is showing others that you are human. It helps everyone to know there are people, who take great care of themselves, that don't always have a perfect 6.

Hugs to you, my friend :)

Scott E said...

So, Kelly -- I'm reading this blog and I get to the point where you tell your doctor about being so tired of it all. And in my mind I hear your voice...your passionate yet slightly-unsure voice, quivering and trying to maintain composure...I've heard that voice before, and I feel like I'm there in the room with you. Understanding what must be going through your head...and in a way I feel lucky. Lucky that I've met you help me to understand and appreciate how diabetes can sometimes affect different people differently. And how quickly and suddenly these feelings can overwhelm and take over every thought in your body. Because lately I feel I've forgotten that, and I really needed the reminder.

Then I read about how your doctor and CDE are going to help you figure this out, together. I read about how they joke about yelling at you, which tells me that they understand that yelling triggers fear and resentment, and nothing more. And your doctor extends a personal invitation to a support dinner that, outside of regular quarterly appointments, he thinks will help. And I think to myself: Wow, Kelly, you sure are lucky. Your medical team really cares and understands you, and that caring and understanding goes on long after your appointment does. They see you for you, as a unique individual, not just another T1 on the day's schedule.

Then you question your effectiveness as a blogger and advocate. And let me tell you -- just from reading this post, I am reminded of so many things I'd forgotten. About how doctors should treat patients; about how PWDs should treat each other; about how profound a ripple effect can be from a simple number. About how it is sometimes worth it to drive the entire length of the Atlantic City Expressway, and then come, just to see someone that makes you feel comfortable. And I've got tears streaming down my face as I lie in bed and type this.

Don't ever discredit yourself, Kelly. You've been in this D-blogging thing for a long time, and you've touched so many people, and you show no signs of slowing down. You're keeping it real, raw, and authentic (like a Jersey girl should!). Everyone who reads this blog is privileged, and that's entirely because you were here to write it.

So when you're done crying (because everyone needs a good cry now and then), smile and be proud. You've got so much to be proud of.

Laddie said...

Thinking of you and sending lots of strength and hugs from Minnesota:-) Everyone with Type 1 has a different size of baggage that they have to tote around. With your mom and sister and also being diagnosed as a child, you got an extra large suitcase. Sounds like you have a great medical team to help you with the physical stuff and who also understands some of the emotional stuff. Sending virtual hugs for now until the wonderful day comes that I get to meet you in person. Some day. Some place.

Sue Rericha said...

Kelly, I'm feeling a lot of the same emotions right now. I got my bloodwork done on Wednesday and should hear the results today (appointment is in 2 wks). I put all this pressure on myself as a diet/exercise controlled Type 2 super mom of five. I have a feeling that my A1c went up. My meter has been warning me of this, even though I've been watching what I eat and exercising. I feel like I'm failing my diet/exercise status even though I keep reminding myself that medication does not mean failure. I am so thankful for the tribe. It doesn't matter what "type" we are. We all support each other!

StephenS said...

Kelly, I wasn't able to catch this yesterday, so sorry I'm late. I'm not worried about you at all. If something's up with your A1c, it's definitely not you. You will always be awesome. This is just a blip on the radar. I believe in you.

Kim said...

I couldn't have said it better than Scott E, above.

You have so, so much to be proud of.

Anonymous said...

See....we don't have to walk around with our A1c score written on our shirts or anything ;-) I hope you have an awesome weekend and RAP on with your bad self. Much love to you.

Jason in Orlando.

Holly said...

Oh, Kelly. We were on that parking lot of a bridge just a week ago. That's enough to bring tears. (ok..there were four very wild kids in the back making me cry too..)

Forgive yourself. It's a number. A number you haven't seen in 18 years, and if it were our number, you'd tell US to let it go. Just because you are an amazing advocate, doesn't mean you have to be perfect.

Cry, breathe, sing, and let it go. Oh no..are you hearing Frozen now? Sorry.

Thanks for sharing with us even when it's hard. We don't think any less of you. You're perfect just the way you are. Hugs, girl!

Misty said...

It's good that you said its OK to cry, because this totally made me cry!! I can't even tell you enough how much I appreciate your honest blogs. The way that I relate is that I work so hard along side of my daughter for a perfect A1c and often all the work doesn't seem good enough. But I have learned one thing and that is that "perfect" is a working pancreas and I will continue to help guide Ally towards caring for herself in the best way she can, but I will never make her feel bad bc of an A1c. She works hard every single day...and I know you do to! Kelly, you are a role model and an inspiration for us and for so many others. Hugs!!

Adawk said...

So glad I found this, this explains exactly how I have felt in recent months....tired.

Hope that A1C is on the decrease!!

Araby62 (a.k.a. Kathy) said...

Didn't see this til you tweeted it just now. I'm at the same crossroads, same A1C and same explicable/inexplicable 1-point rise since the previous. I wish my doc was as good as yours - she's ok but a family practitioner who thinks more Lantus will "fix everything". And I don't feel like an advocate anymore when I can't even advocate for myself...but I'm alive, still fighting, and I know I'm not alone when I think of all the others like you on that distant poetic bridge. This is one of my favorites on days when it just gets to me...hang in there. Love, Kathy

moodymoose77 said...

I was diagnosed with T1 in 1999 and I am so weary. It feels good to know other people know I feel. Thanks for sharing Kelly! I don't feel so alone in my struggle.

FatCatAnna said...

I am just reading this now ... and it's friggin' awesome ... how do you get into our heads ... and voice exactly how many of us feel!!! It's like ... MAGIC!!! I still wonder when I'm going to pop my cork - as I come up to 50 year D-anniversary.
Psst - hope you are coming to the Diabetes unConference in Las Vegas - look for me - I maybe wearing my ears ... meow \\^,,^//