Friday, September 30, 2011

The Joslin Experience

My mom was diagnosed with Type 1 when she was five years old back in 1958. She was recently able to travel to Boston to the Joslin Diabetes Center as part of the 50-Year Medalist Study, after being encouraged by her current endo Dr. Fred Whitehouse at Henry Ford up in Detroit. This is her account of that experience.
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The 50 Year Medalist Study hopes to test about 1,000 people. I was number 652 in the testing process. Joslin has given out approximately 1,500 of the medals so far. When I received my medal in 2008, I did not volunteer to participate in this study. Since then, I've been encouraged by several people I hold in high regard to do so. Upon thinking about it and talking to the study coordinator, it seemed like maybe something good would come out of it.

Why are there people after 50 years with few or no complications and people after 10 years with major problems? Do some of us hold answers to things like this? Maybe we do and maybe these studies could lead to something positive in the future. When the study was first started, they didn’t really know that after 50 years, Type 1s produced any insulin – now we do, as a result. You have to look at this as a hopeful and positive experience, and think that something useful and good will come out of it.

That’s why I participated.

Before you go, you’re sent a detailed questionnaire about your life and medical history that takes about two hours to complete. You are flown to Boston and put up for one night in a hotel near the Joslin. You must fast for 10 hours before the testing. After you enter the Joslin Center, your height and weight are taken. You are given an ECG to study your heart function.

Next, the test called a Mixed Meal Tolerance Test (MMTT) is done. For this, an IV is inserted into your arm with a four line port. One line feeds saline through to keep the line open. The other three ports are used to hook blood tubes in at half hour intervals to withdraw the many tubes of blood that are needed. The total amount of blood taken is about 158 mLs over the two hour period. At the start of the testing, your insulin pump is stopped. Then you are given a Boost-type milkshake to drink within a 3 minute period, and the initial blood is taken. Blood is then taken every half hour for two hours total, your pump being off the whole time. The purpose is to see if your body makes any insulin. Some Type 1s, even after 50 years, still make insulin.

You also provide a urine sample. Another sample kit is shipped to your home for you to mail back a test tube of urine for a second test. These are for kidney function tests. Your eyes are dilated and examined by the retinologist, including having “eyeball pictures” (known as Optical Coherence Tomographs) obtained on each eye.

At the end of the testing that lasts approximately five hours total, you’re given a report from the retinologist and a copy of pretty pages of printouts of the eyeball pictures. The rest of the test results are mailed to you in about 2 weeks. This includes the lab work that was done, including the follow-up urine you mailed back to them.

You’re given the results of the MMTT, showing if you make any insulin. You are not given the results of this one test in writing but only orally. The reasoning behind this is that it is a very specialized c-peptide test. If you might be producing insulin and the results were given to your physician’s office, Joslin wouldn’t want anyone to ever be denied a pump because of this specialized test. Some insurance companies use a c-peptide as one criterion for a pump. Seems like a logical answer to me, knowing how insurance companies work. But this wouldn’t be a worry for me, as I didn’t make enough insulin to even register on the test.

Being at the Joslin is a unique experience for someone who has heard for many years that it is the epitome of good diabetes care. Although the current site is not the original location that Dr, Joslin lived and practiced (it’s about three miles away), there are some brilliant people working there today.

It is a large complex and it would be wonderful to have one place to go for everything – eye care right in the same place as the endo care. Although I live in a metropolitan area, my care is very spread out. It seems ideal to have it all together.

The 50 Year Medalist Study is a continually-evolving entity. When it started in 2005, blood tests and an eye exam were all that were done. The MMTT was added in 2009. They have done approximately 150 MMTTs to date. Each time something is added to the study, a new grant has to be applied for. So it’s not a quick process to add another test in. Once you become part of the study, participants are kept advised of new findings and results which come out of the study. They are also advised when new things are added into the study.

Ideally, Joslin wants you to return every three years to be retested so they can keep a running log on how you’re doing and what’s happening with your health. Also, if new tests are added, they will be able to give you the newly added tests. Another thing that is discussed briefly with participants is the organ donation program of the 50 year medalists. If you are willing to donate some of your organs upon your death, Joslin is doing studies of them. Papers are given to participants to take home and review for consideration.

Upon completion, I was given a T-shirt that says “50-Year Medalist” on the front and “50 years of success with Type 1 diabetes” on the back.

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Thanks for sharing this, mom. Your story and what I've heard from others, including a video put together over at Six Until Me, is very inspirational. Though I'm only in my 27th year of D-Living, I hope to reach that half-century milestone at some point and can only imagine what we'll know by then because of all this ongoing research now. Thanks for being a part of that bigger picture, and for what you do to help, love, and support me - then and now.

Thursday, September 22, 2011

Please Play Nice

Our driving experiences bring us together, typically twice a day. Sometimes more.

Insulin Pump: you stay fastened on my belt-line, keeping up my insulin fix as we travel along. You occasionally get to move around and escape that plastic holster, in times of coffee-bolusing or minor comfort-adjusting. That usually lets you brandish that tubing around with reckless abandon, and that’s a concern.

Seatbelt: the law tells me that you must stop hanging around when I’m behind the wheel. That means you have to get all clickety-snuggly in that slot to secure my safety, and usually equates to sharing personal space with Said Insulin Pump.

Obviously, I’m right there with you both. The Diabetic Driver who gets stuck in the middle as you try to wrap yourselves around me with care, all in the name of simultaneous driving and blood sugar safety.
I know. Things can get confusing, when we’re all jumbled together. Especially when we’re Already Running Late.

But you two must co-exist. There’ll be no tangle-dancing or knot-attempts, OK?

We aren’t rocking in tubeless patch pump world. And no magnet attaches my butt to the seat. It is what it is, and I need you both to recognize the pitfalls we can encounter on these regular rides.

No rough-housing, like we’ve had before. The kind that’s led to mass confusion and insulin set sacrifices. We’re in this together, and that means respecting boundaries.

So please, play nice.

And I promise to do my best in getting us to where we’re going.

Thank you, kindly.

Monday, September 19, 2011

Visible On My Own Terms

So, last week was Invisible Illness Week and many of my friends in the online diabetes and health communities took to posting about this and answering 30 questions relating to their views on living with an invisible illness.

I didn't.

Life was busy. And I had enough real-world writing to do for my day job.

The weekend came, and as much as I appreciated reading the other posts and pondered doing up my own List of 30, I simply couldn't bring myself to do it. 30 is a lot, after all. And I'm not the greatest fans of just doing MeMes, anyhow (even though I wrote one up in 2010.)

But in reflecting on my own Type 1 diabetes over the weekend, it dawned on me: I actually did want to write something about this topic.

Simply, a message: My D was in fact INVISIBLE for most of last week, but it's not anymore in that same way. And it's by MY OWN choice.

See, I'd taken a pump hiatus a month or so ago. Tried one a year ago and had great success, and so I got to the point during the summer where it was time to try one again. Just a way to give my body a break from the every few day routine of connecting a new infusion set and going through that process. A mental break from pumping, a healthy "vacation" from that usual D-Management method, if you will. My life became one of a handful of shots a day. And in some ways, it was very freeing not being connected to a device 24/7.

One day, I saw another fellow Person With Diabetes outside my office building who had an insulin pump. He had a visible sign on his belt-line, but I didn't have my own pump to share and display. My diabetes was, even more than usual, "invisible" at that moment. I was Already Running Late and didn't have time to stop anyhow, so there was no meetup.

I'd been thinking about re-starting my pump, and this experience helped motivate me to re-start on my pump a day later. So, a few days into what was Invisible Illness Week, I made a move to make my diabetes not so invisible anymore. And it's once again something that is displayed for the world to see, should they choose. And if they don't just shrug it off as a pager...

So that's that.

I've now re-connected to the world of insulin pumping, and in a sense, here's me embracing this year's theme of “Deep Breath, Start Fresh."

Yes, I'm "normal" looking for all intensive purposes and for the most part my Type 1 diabetes doesn't present itself in situations where I don't want it to. Even when my pump is out there for all to see. It's important that my diabetes be something that is visible or invisible on my own terms. And though that sometimes isn't the case, most of the time it is. That is something I'm very grateful for.

And now, I choose to wear my pump again and make it a visible part of my life.

Friday, September 16, 2011

Five Weekend Words

A friend and fellow D-Blogger had a post today about a recent Twitter-exchange that I'd missed out on. It inspired me to follow in those footsteps, with this post.

If you could customize your blood meter countdown (to replace the 5,4,3,2,1...), what would your 5 Words be?

Here are my top answers:

This Meter Will Self Destruct.
(Read: Blood Meter Nirvana = Mission Impossible)


Do you feel lucky, punk?
(Talking meter would say this in Clint Eastwood's Dirty Harry voice)

Possibly, could also be exchanged with:
"Go Ahead, Make My Day."

And Finally:

Turn Around Before Zombies Attack.

Possibly to be interchangeable with:

"They're Coming For You, Barbara."

(Because Diabetes and Zombies go hand in hand.)

What would your number-replacing-words be? Feel free to copy and paste your response to Jess's post. Or just not answer here if you've already done so at Me And D.

Happy Weekend!

Wednesday, September 14, 2011

Already Running Late

I was running behind Wednesday morning.

Late to work, thanks to traffic woes. Courtesy of the construction on Indianapolis expressways and the drivers who simply shouldn't be allowed to take up space in the traffic lanes.

While I was going to be late, we're not talking an extraordinary amount of time - just enough to ensure that I'd be walking into an important meeting at work minutes after it was set to start. Or that I'd be responsible for delaying it. A phone call to let my boss I was en route and all seemed OK, but I wasn't eager to prolong my delay any more than necessary.

Finally made it downtown after the construction and congestion. Came to a halt on fourth floor of my parking garage. Sacrificed a quick moment to test, dreading the result (300+ mg/dL, in case you were wondering). Lifted my shirt and took my morning Lantus injection that I hadn't had time for earlier while still at home and also grabbed some skin to pinch for a correction bolus.

The fact that I was High just added to my mood, even if it was Wednesday (aka #dsma day) and cause for automatic D-Community Happiness. Composed myself and headed down, hopping down some stairs and then crossing a couple crosswalks toward my office building about two blocks away. The front door was just around the corner, meaning I was only moments from seeing my boss and colleagues in that morning meeting.

That's when I saw HIM.

A Random Guy At A Parking Meter.

He was a complete stranger, standing off on the side of the sidewalk feeding some money into the new parking meter boxes. Had never met him before... but on his belt line was something oh-so-familiar and made this man a member of my extended family: A blue-colored Minimed Paradigm insulin pump!!!!!

It was like a scene from Kerri's own blog, where you might not be surprised to hear the line "I See Pump People."

But this was my own world. And he was right there. Ten feet away, but getting closer as I hustle-walked along. Had I stretched out my arm, I could've grabbed his pump. Or smacked him on the back, like a long lost friend re-connecting after eons of being apart.

I really really really wanted to jump toward this D-peep, pointing like a nerd to his pump and screaming, "HEY THERE, FELLOW ADULT D-PEEP, NICE PARADIGM PUMP THERE! WHAT A SMALL WORLD!"

But I didn't. Instead, my mind moved quickly and tried to weigh the two things competing for my attention at that moment: the need to get to that important work meeting, and the incredible desire to meet a fellow PWD right there in Indianapolis.

Hmm. I was already late.. what harm would another couple minutes mean???? I could do a quick intro, say hello, offer a business card with contact details, and move on.

Yet, then it occurred to me that I was indeed still on a Pump Hiatus and wasn't wearing my insulin pump. Instead, I'd have to explain that and possibly even get into the why for this little break... Why I wasn't wearing any signs of my diabetes on the outside, and appeared to be just some random person.

My mind envisioned this imaginary conversation: introductions, pump-gawking explanation, and the rest of the conversation that could/would likely begin, despite my really not having time to talk. I flashed to that awkwardness of needing to get away quickly, even though I was the one who'd made the first connection.

So, I resisted the urge and kept walking. Eyed his pump as I walked by and tried to etch an image of his face in my mind for later reference... then got to my office and went inside. Because I was already late.

On the elevator ride up, I regretted not saying hello to this fellow PWD. But I committed to blogging about it. And then I found a cup of coffee and made my way into the meeting. Then had a busy day that didn't allow me to think about the missed D-encounter until getting home that evening.

And that's when I wrote this blog, about my Pump Person sighting from the Streets of Indy. We're apparently everywhere, us PWDs. And that must mean that there's a whole bunch of Nerd Parties of One going on, or we're all destined for the same shin-dig where tackle-hugs are par for the course. (Did some say FFL? Or Simonpalooza?? Adult D-Camp whaaa...???)

Anyhow. I end with a message to you, Mr. Pump-Wearer Who Feeds The Parking Meter on Pennsylvania:

"Sorry we couldn't connect today, but I hope we get that chance again... when neither of us are running late and there isn't a work priority already waiting. Steady BGs your way in the meantime, until the next encounter on the streets of Indy comes our way."

Monday, September 12, 2011

Carnival Time

Summer has been pretty intense in terms of weather, personal and professional aspects of life, and diabetes in general. Very busy, chaotic, and up and down. Now that we're in September and Labor Day has come and gone, I've finally gotten a chance to reflect and slow down. I took some time to look back on Diabetes Blog Carnival entries - and apparently I've been delinquent on these posts for several months. So, here's a rundown of those entries I hadn't written for several months, making this a Summer Selection of D-Carnival posts.

For September, the entry is:

If I didn't laugh about the used blood test strips that follow me around, then I would be totally overwhelmed by the fact that I was being stalked by a line of bad D-decisions in my life.

 You know, because those darn little strips are everywhere. On the floor. In my shoe. Beneath my desk. On floorboards of my car. Even in my coffee cup from time to time.

It's like they are trying to taunt me about all the things I do wrong...  since it's pretty clear that "I am perfect... perfect at being imperfect."

The Diabetes Online Community has taught me humor as a coping mechanism, and I think that is why management in recent years has been so much "easier" to deal with than in the past. Laughter is the best coping mechanism, and in being able to keep a sense of humor and share that, I know that I am not alone and don't have to shoulder this life of d-management all by myself.

For August, the entry was:
 Let’s discuss the lack of diabetes education, supplies and insulin for PWD’s living here and in other countries. What can we do?
In my opinion, so much of what can be done is being done already - just not across the board. We have so many scattered efforts in the real-world Diabetes Community, and we just haven't connected the dots in advocacy and story-telling to let the broader community know about what's being done. I think building our infrastructure is a way to get this done. Using tools such as DiabetesMine, the You Can Do This Project, patient-advocate communities and efforts such as TuDiabetes and Diabetes Advocates to connect these dots and tell what's happening. And then getting publications such as Diabetes Forecast, DiabetesLiving, diaTribe, and all those in the non-D community to spread word even more broadly.

For July, the entry was:
Over the years diabetes technology has come a very long way from the days when syringes were boiled and sharpened, and sugar was checked using droplets of urine and fizzy tablets in test tubes. Today we can choose from an array  of blood sugar meters, insulin pumps, carb counting apps, data uploading programs – technology is woven into our diabetes lives.  But although technology has come a long way there is always room for improvement, right?  So this month give us your complaints, your ideas and your technological wishes and tell us: What improvements or adjustments would you make to current [diabetes] technology? 

I'm really thinking that we need a D-technology app along the lines of a food-wine pairing... But instead of matching up the appropriate food and wine, it would match up our specific D-happening (Highs, Lows, Spouse Assistance, D-Meetup Planning, Camp Adventures, etc.) with a particular DOC resource. Example: I have a Low while at work, and this technology tosses my way a note about Kim's recent post on a related experience. Or I am getting involved in my local D-Camp, and it lets me know how Kerri's been a part of Camp Clara Barton. Or even that I'm curious about setting up a legislative meeting to talk diabetes with my Congress-person, and it alerts me to what Scott Johnson has done on this front.

Technology could very simply affirm patients that they are not alone, and prove it by connecting them with those who've gone through that same situation before.

That could be the latest and greatest thing, and it's only a matter of time... I'll await the news that this concept is pitched during the next DiabetesMine DesignChallenge.

For June, the entry was:
When it comes to diabetes, sometimes it seems things change more than they stay the same.  Every so often, we may start to notice things going a bit out of whack and some new blood sugar patterns emerging.  Part of being an informed and educated patient is learning to identify these problems.  So this month we’d love to hear: What are the best resources you have used to help trouble shoot?

Without a doubt, it's the support of the Diabetes Online Community. Not only have I been able to find some new ones to cope and view certain situations, and expand my perspective and mindset about a particular issue, but I've learned new tools and tricks that I may have not known about before. Like how to fine-tune temp basals during the periods of exercise, times that I'd seen "super-charge" my body but I hadn't ever really recognized it before. Having that online resources of people who truly live with diabetes and "get it" has been so incredibly important and eye-opening.

For May, the entry was:
Friends, parents, spouses, care takers – we sometimes call them Type 3’s (or Type Awesomes) and they are the awesome people who support people with diabetes and help us in times of need.  And sometimes those times of need turn into an experience that really makes us laugh later on.  So this month, tell us: What is a funny diabetes experience you had with a Person Without Diabetes / supporter / T-Awesome?

Once, I thought my wife was an alien trying to force poison apple cider down my throat during a Low. Another time, I thought she was a Communist trying to torture me for being from the U.S.A. Those were some scary low situations that may have involved the paramedics being summoned to my home, but my wife was a trooper and did what was necessary - and now, we are able to laugh about those times. And every so often, she threatens to alert the Communist Aliens to come take me away when I'm acting up and not listening to her as I should... (she's such a team player; i.e. Loving and Supporting Spouse).

These posts have been my May-September entries in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information for the latest month over at

Friday, September 2, 2011

Farmer and the D

Are those CGM farm animals alerting farmer to a Low?!
I found myself singing this song recently, while sitting at my kitchen table:

"Lantus in the leg. Lantus in the leg. Hi-ho, the derry-o, a shot of Lantus in the leg."

Go on. Sing along. You know you want to.

Now, I can't tell you What the Fructose a dell or derry-o even are, sine I'm not a farmer and I didn't care enough to Google it. But I do know it's a catchy tune. So that's all there is to it.

(Humming to myself... Snapping my fingers to the beat.)

Now, just imagine what it'd be like if Old McDonald Had a D-Farm...

Thursday, September 1, 2011

Diabetes Art Day 2011

I'm happy to be participating in the second annual D-Art Day.

My pair of 2010 "Kitchen Creations" from last year can be found here.

But for 2011, here are my two newest an attempt to simply do what Lee Ann says: Create. Communicate. Connect.

So, enjoy!

Our D-Lives are a non-stop game of chess, made up of some of these pieces...

Diabetes on the Mind... sorry it's not the most clear. If only you could spin the computer as you read what's on my mind...