Can I put poetry in motion for PWDs?

So a couple of weeks ago I was honored to be featured on Kelly Writers' House Live, airing on Philadelphia's WXPN 88.5fm.  I'd like to thank my friends at Apiary magazine for inviting me to appear, and I'd like to thank Michaela Majoun for her gracious hosting.  Also a big thanks to the University of Pennsylvania for having such an awesome Writers' House and a great bunch of people in it, including Alex (I could have her name wrong) who was running the show.

It'll be archived online soon enough, and I'll let you all know where you can go listen once it's up.

But all this poetry stuff has me thinking--is there a way to combine writing with helping people with diabetes?  Has anybody done writing workshops for PWDs?  Do you think people would be interested?  I am seriously contemplating how to facilitate this one; I think it could be a cool exercise in patient empowerment.

So much brainstorming right now about so many different subjects!  This is merely one thing that's on my mind, but I figured a great thing to bring up among my diabetes community compadres. 

Thoughts?  Suggestions?  Any takers?  Maybe?

Have a great weekend, all.

Diabetes Blog Week, Day 5: What They [You] Should Know

I am not a role model in the sense that I have a great A1C, or that I always know what to do about diabetes.  I don't have all the answers.  I just have 21+ years of experience.

I don't always know exactly what I'm doing, but I am trying my best to keep up.  I read a lot of blogs.  I may fire off a lot of terminology that you don't necessarily understand.  If you want to understand, please stop and ask me.  I'd be happy to try and help explain.

I don't need your policing, but sometimes I may want your help.  Let's work together to learn the difference. 

I appreciate it when you have diet soda or unsweetened iced tea at parties.

Sometimes I don't mind if you're looking at the numbers on any of my screens.  Sometimes I do.  It can be a touchy thing.  It makes me feel fickle.  I'm sorry if you want to look, then I snap at you a bit.  It's not you.  It's me being embarrassed by the results I don't like.

If you think you don't need health insurance, I will try to convince you otherwise.  If you think national healthcare is a shitty idea, I will try to convince you otherwise, angrily.  Furiously, if you try to tell me that changes to my lifestyle could have prevented me from getting diabetes.  I was eight years old.  It was autoimmune.  If you don't understand that my family didn't choose this for me by their actions, then you may get your toes stomped on with some combat boots.

Sometimes I lick my fingers after I check my blood.  It's my blood.  It's less gross (to me) than keeping one of those blood-spotted tissues in your testing kit.  I'm not a vampire.  Deal with it.

When I'm cranky, it might be my blood sugar.  It might not be.  It's hard for me to tell the difference, too, so don't get too discouraged.

You know those 21+ years I mentioned earlier?  I've had type 1 this long, and I'm still learning every day.  I'm still trying to figure out how and when to do things, what to eat, what not to eat.  I'm always trying to have a better attitude, and sometimes I completely fail.  Diabetes management is about trying, and accepting that failures may not necessarily be my own fault.

There is uncertainty built into every single day.

I worry about you worrying about me too much.

I worry about me not worrying about myself enough.

I worry about every ache, pain and discomfort in my body, but I try not to let it get to me.

Every person with diabetes is affected differently.  We all need different amounts of insulin, medications, etc.  We all have our own management styles.  You say your Aunt Matilda was "cured" by a lot of exercise and a raw foods diet?  Goody on for her.  That doesn't mean the same will work for me, you, or your other family members.

DIABETES FUCKING SUCKS.  There.  I said it.  I love bringing you guys the lighter, goofier side of things.  That's just my personality.  But at the end of the day?  I have a chronic illness.  It's not fun.  There are times I am actually working really hard to feel like a normal person.

And you?  Well, your love makes me feel like a regular, healthy woman.  Love me, through the ups, the downs, the highs, the lows, the middle-of-the-night juice run to the fridge, the disgruntled clack of an old infusion set against the wall because I just can't deal with one more failed site change.  Love me.  Everybody with diabetes needs love, kindness and respect. 

Getting on the Couch

Well, I did it.  Tomorrow I will be seeing somebody.  I hope he is good.  The receptionist was extra-friendly when I called, and reassured me that not only is he a phenomenal therapist, but he is also super-nice.  She added with a bit of a knowing chuckle, probably about others at the practice, that some people are really great therapists but they're not as nice.

We'll see how it goes.  I am a little anxious about it.  Seems fitting, no? 

I picture Betty Draper from Mad Men splayed out on the therapist's couch, talking more to the ceiling than anything.  (Author's Note:  I am nothing like Betty Draper, except that we are both blonde.)  TV never seems to show a therapist caring about a patient.  Of course, TV is bad at a lot of things. 

So what's going to happen?  I'll fill out some paperwork, and then talking will happen.  That's all I know.  Maybe I will be able to tell you more tomorrow.  I'm excited to be doing something really good for myself.

In the meantime, I've been having a good week.  I wrote a new poem, and I have new resolve to kick ass in a major poetry slam that's happening next week.  If I win, I will be going to Colorado to represent Philadelphia in a national poetry event!  Competition will be tough.  I'm honestly a bit terrified, and I've decided that's a good thing.  More motivation to be awesome, I think.

Meanwhile, it's back to the usual workday routine.  How are you today, DOC?

"Coming Down", as sung by My A1C

I've lately found I have a good rapport with my female health care providers.  Dr. M (my endocrinologist) and I get along fabulously.  At my last visit at my primary care doc's office, Kate, who is an amazing nurse practitioner, and the office nurse both remarked that they like when I come in to see them because I make them laugh.  I think being able to be yourself around your healthcare team is a huge key to success. 

Today, I went to Dr. M's office for a checkup.  She is a very nice woman, usually on the perky side, always willing to answer my questions and often smiling at my jokes, as hinted at above.  This is good, because I'm usually nervous when I go to the endo.  Not for anything she's doing wrong, mind you.  It's just me.  Thoughts of bad A1C's or surprise bad results on other lab work make me anxious.  

I've been told a million times that I am more than an A1C.  I am more than just diabetes.  Usually, this isn't an issue for me.  I live my life, I get along, and if diabetes tries to throw me a curveball, I do my best to catch it.  But when you're staring down the barrel of an endocrinologist appointment, it's easy to catalog all the things you haven't done right, all the things that could have been so much better if you just tried.  You worry.  You wonder what all the neglect is actually doing to your body on the inside.

I have said it here a zillion times:  I am a diabetes blogger.  I am not a model diabetes patient.  I don't have an amazing A1C.  Compared to some people, I may take "a lot" of insulin.  I am definitely not getting enough exercise.  I'm not a role model--I'm just a person who is here to share her experience, to find support, oh, and to mouth off when I feel like it.  Does the world need my 2 cents about living with diabetes?  I like to think so.  I enjoy being able to lend my unique perspective to the world.

I was able to start breathing the sighs of relief early in this appointment.  My blood pressure was great.  My weight was not really any different from last visit.  The nurse didn't even make a face when my BG reading was 235 mg/dl after lunch.  Dr. M came in pretty promptly, and we started talking about doing basal tests before we make any adjustments.  We talked about how I want to continue with the Symlin, even though I had taken a break from it.  We talked about her belly!  She's expecting her second child in January.  Then I talked about the biggie.

I told her I've been thinking about a Dexcom.  She said that normally, when people want to get an insulin pump and they haven't had one before, she doesn't just let them contact the company to ask about one.  She said she likes to meet with her patients and make sure they get the training they'll actually need.  Dr. M then told me for somebody considering a CGM and a sensor, she's quite happy to write a prescription for the system without any kind of preparatory visits.  She also reassured me that if I want to get a continuous glucose monitor, the Dexcom is the way to go.  She told me it wouldn't hurt if I also find some kind of exercise that I really like and start doing it.

So I have a plan for the next few months.  I won't see Dr. M again until April, when she is back from maternity leave. 

The biggest surprise today?  The in-office A1C test.  My last A1C was 9.8.  I know, nothing to cheer about, something to improve.  Today's A1C?  9.0!  Again, not perfect, but enough to make me do a little happy dance.  That's almost down a full point!  I was smiling; Dr. M was smiling and told me that was actually a great job and way better than she expected to see given some of my numbers we had been talking about.  It may be a tiny victory, but it's a victory for me nonetheless.

As Dr. M and I said our goodbyes, she told me to keep up the good work.  She then also added, "But make sure you really enjoy your Thanksgiving!"  I told her I was looking forward to the pie.  "And you should!" she said. 


I know I need to do some serious basal tests, but you know what's amazing?  When your endocrinologist acknowledges that you shouldn't guilt yourself along through a holiday.  I may just drink a toast to Dr. M with my turkey on Thursday. 

And in case you need a reference, here is the theme song to my A1C today: