A New Direction in Kansas City

On Wednesday evening, May 18th, a group of T1 diabetics and their partners gathered together in Kansas City.  This was the first meeting of this particular group since Jeffery Brewer’s announcement of the JDRF’s new outreach program for the Adult T1 community.   By the way, among this Wednesday evening group was Jess, it was certainly nice to see her again!

This get together was organized by the Kansas City Chapter of the JDRF and was attended by over a dozen individuals including all flavors of Type 1′s,  those diagnosed as children, those as adults and caregivers and partners as well.   It was really a kick-off meeting for what the Adult Type 1 (AT1) group in KC wanted to accomplish in the coming year.

Regan, who is a staffer and is the Director for Outreach and New Business here at the KC Chapter, hosted the event at a local restaurant, Lucky Brewgrille.  The restaurant has been the site of previous JDRF events and the food and beer selection is really quite good.  I had a Shrimp and Bacon Club sandwich, sorry I was remiss in getting a photo, but it was totally bolus-worthy!

Regan introduced herself and explained how this adult type 1 outreach effort is a new direction for the JDRF and really getting it rolling would take a while.  We all then introduced ourselves with a little background and got down to business.

As someone who’s been pretty critical of the JDRF in the past regarding the adult T1 community, I have to say that I was impressed with the meeting.  First of all, I don’t believe there was a single mention of fund-raising.  Second, Regan was very attentive and took a lot of notes as the attendees told their stories, reasons for attending and what they’d like to see in the future.

All the attendees were great, listening and supporting everyone as they told their stories.  We were all focused on one thing: Making things better for diabetics as they navigate through the various stages of their lives.

One of the more common themes was, of course, support; some face-time with other diabetics where you can just chat without the D hanging there like a low-lying apple, ready to fall into the middle of everything.  Just someone who really understands how frustrating things can be at times.

Just a few of the other topics included sports, caregivers, the issues women face and outreach efforts.  Not only to the diabetics we know about, but also to those who we don’t know about.  They probably don’t know who the heck we are either.  How can we reach them?

I know that we can’t be given lists of diabetics that various doctor’s in the community see.  That would certainly make it easier for us to “find” them (and go to jail) but I wonder if we could do it the other way around.  Give the doctors lists of local resources that they can either hand out or just have sitting in their offices.  That way, the patient has the info they need if they should choose to use it.

I think every advocacy blogger that I’ve ever read has asked this question: “How do we find the people that don’t know about us, about the support systems that are available.  How do we make them aware, get that info into their hands?”

That’s a damn good question.

Scott

Today’s snarky comment: You really didn’t think I’d do a post without at least one curse word did you?

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

{Diabetes Blog Week} Day 5: Diabetes Awesomeness?

2nd Annual Diabetes Blog Week

 

I’m having a bit of trouble with today’s topic “write about the most awesome thing I’ve done BECAUSE of  diabetes.”  I think it may be due to the word BECAUSE.  I prefer a more TO SPITE DIABETES attitude.  And honestly, diabetes is so intertwined in my life, everything I do has some bearing on it.

Well, let’s see how far I get…

10.  I’m still alive, having survived the diabetes dark ages, disco music, 80′s hairstyles, and a particularly bad case of food poisoning in the mid-90′s.

9.  I’ve 2 great kids, 18 & 20

8. I’ve blogged about things I never thought I would share with anyone, let alone the whole world.

7.  I’ve lived to talk about depressive episodes where I nearly did something stupid and selfish.  I think that particular demon is gone forever

6.  I was supposed to be dead 20 years ago… I think I’ve  outlived all the people who shared that opinion

5.  My day does not revolve around meals and shot times

4.  I’m not standing behind you.

3.  That was just to make sure you are paying attention.

2.  I can laugh at myself; which is good because everyone else does and that way I don’t miss out on the fun

1.  And best of all, I have met the truly remarkable people of the DOC

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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{Diabetes Blog Week} Day 4: What I Hate About You

2nd Annual Diabetes Blog Week

 

Anyone else remember the song by the Romantics? What I Like About You? Well, this post for Diabetes Blog Week really shouldn’t make you want to

go up down, jump around, think about true romance.. Yea

10.    You insist on being a part of every poignant moment in my life

9.   You are a liar, doing one thing one day and another thing the next.

8.   I have to personify how I discuss you because I don’t have the proper words to quantify you otherwise.

7.   You made me write that ridiculously worded previous reason

6.   You are uncaring, unfeeling and just an asshat

5.   In the last 40-odd years, you have reminded everyone in my life of mortality. And how one single eff-up on my part could make mortality reality

4.   The more I learn about you and what you are capable of, the more I despise you.

3.   Every moment I spend worrying about you is one less moment that I can just enjoy

2.   You suck.

1.   Listen you sorry excuse for a f***sack, couldn’t you at least leave the children out of this?  Fucker

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

{Diabetes Blog Week} Day 3: Opps!

 

Well today’s blog topic is Diabetes Bloopers! Check out the list of other participants blooper stories!

I once took a bite out of a sandwich I had just made and then quickly spit out the used test strip that had managed to make its way into my sammich!

Remember the scene from Vacation where the dog pees on the sandwiches?  And Aunt Edna just kinda shrugs and keeps eating hers?  I felt a bit like Aunt Edna that day.

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

{Diabetes Blog Week} Day 2: The Letter

 

Dear TSA,

I appreciate that you have a job to do but I have to be very honest when I say I am getting fucking tired of the goddamn full-body pat-downs.  I wear an insulin pump and the manufacturer of that pump says that it should not be exposed to X-rays.

So I opt to go through the metal detector and did not set it off, but the TSA folks here in Kansas City (MCI) tell me that I must submit to a pat-down  simply because I did not subject my pump to the  X-ray full-body scanner.

Cheers,
Scott

 

Dear Anger,

Please stop finding so many things for me to get angry about or I will be very, very cross with you

Kindest Regards,
Scott

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

{Diabetes Blog Week} Admiring our Differences: An Inspiration

I’m traveling for business this week, so this may be my only entry.   Thanks to Karen at Bitter Sweet for the fantastic idea and organizing this herd of cats into a semblance of order.

I struggled a bit with this topic;  I have come across so many people from around the blog-sphere (and not just the DOC, mind you), on twitter and in real life that have had a positive effect on me; it was almost impossible to choose one.  I almost went with all the D-Parents, or all the CWDs, or members of the DOC, but thought I’d really like to find one person; one individual who truly inspires me.

Well, I have managed to find one such individual, after a few minutes of consideration the choice became obvious to me.  This individual faces the trials of life with such grace, courage, determination, and perhaps most importantly, Faith; that you have no choice but to be inspired.

Take a minute and read this post.  I mean really read it.

Join me as we FIGHT Diabetes!

Now if you’ve read it, you’ll see why I have chosen Barbara “Babs” Campbell (@babssoup on Twitter) as an inspiration.

Babs is one of the local diabetics that get together every so often for lunch or dinner somewhere.  Also in this distinguished group is Bob Pederson, Jess, and whoever else is passing through town.  BBQ seems to be our carb fountain of choice.  But I digress…

In the last two years, Babs has dealt with her daughter deployed to a combat zone overseas, a wrong diagnosis of Type-2 diabetes, a correct diagnosis of Type-1 (LADA) diabetes and most recently, a diagnosis with breast cancer.

Babs is currently undergoing chemo for breast cancer and still finds the strength and time to raise funds for the ADA Step Out Walk to Cure Diabetes event here in Kansas City.

I was fortunate enough to have lunch a few weeks ago with Babs, her husband Jon (@kssoup on Twitter) and Bob Pederson.  What struck me first was how “the same” she seemed.  If I didn’t know something else was going on, I wouldn’t have known.

But what really stood out was her, and her husbands, Faith.  She just seemed so calm in the face of what was going to be a strenuous ordeal.  I’m sure there were moments of tears and the worry that will always be there; it just seemed that she was so strong.

Maybe she is being strong for those around her, those who care for her and are praying for her and her family.

That statement may just sum up why I find her inspirational.

If I am ever faced with such a trial, I hope that I can face it with the strength and grace that she has.

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

I’m Sorry, Doctor But I Take Exception to Something You Just Said

In the latest edition of the JDRF online magazine, Countdown, one of the Features is an article titled 16 Self-Care TIPS (Type 1 Positive Suggestions!) and has a few tips from 5 “experts” on living with Type 1 Diabetes.

4 out of the 5 experts actually have some decent advice, but I have to take serious exception to one of them.  Interestingly enough, he was the first of the five to offer his “tips” and he angered me enough that I almost didn’t even look at the other four; let alone the rest of the edition.

I’m taking exception with William Tamborlane, M.D. (read more about him here); he certainly has an impressive resume and has made incredible contributions in the field of diabetes care.  I do, however, have to take serious exception to tips #3 and #4; they certainly don’t seem to fall into the “Positive Suggestions” category.   Let’s talk about Tip #3 first.

Be a “Diabetes Honor Student” by acing your A1C test:
less than 7.0%= A+
7.0 to 7.5% = A
7.6 to 8.0% = B+”

Let me get this straight.  You are going to judge a diabetic based on a single number?  If you were to do that to me, I would explain to you in no uncertain terms why that is wrong.  Those explanations, by the way, are often followed by the words “You’re fired.”

Here’s why its wrong:  It does nothing to recognize what effort that particular individual has put into obtaining that “grade” or what extra things might have been going on that could have affected it.  For example, see my recent post What I Learned Being Sick for a rundown of what high stress, illness and a couple of “dubious” bottles of insulin did to my “grade”.

The combination of all those influences added a full percentage point to my A1c between December and March.  While I still would have been a “passing student”; the impression that I get, from the mere fact that you would recommend such a “grade” system, is that you would chastise me for that increase.

When the fact of the matter is that I was busting my rear to keep things under the best control I could.  I’m glad not all doctors are like that.  Mine certainly isn’t.  At my appointments, my doctor always asks me how things are going before we talk about “grades”.  Her response about my “grade” was basically “I think this X.X A1c is totally justifiable given the circumstances. “, she didn’t mention the full-percent point gain at all.

Overall, I see that type of “system” as simply adding yet another thing to feel guilty about with diabetes.  No one is perfect, we all have “good” days and “bad” days.

I already feel guilty about the worry my condition places on my loved ones, I certainly do not need another layer of guilt added.  Especially when it comes from someone who is supposed to help me manage a life-long condition, not make me feel like I’m failing based on a single number.

I’m the guy who has to walk out the door and do all those things to make that passing “grade” and honestly, it doesn’t really sound like you have the slightest clue what that entails.  Despite your incredible career, it makes me wonder if you actually just sit once in a while and talk to patients.

Now, for Tip #4

Stay optimistic. Getting diabetes is like getting dealt a bad hand in poker. You can cry about it or you can accept it and play it the very best you can. You’ll be surprised by how well it can turn out.

While staying optimistic is certainly an incredibly helpful thing; I believe it is the rare individual who can truly stay optimistic with any lifelong chronic condition.  It is all day, every day.  You seem to know that but don’t seem to have taken it to heart.

Every diabetic I know has suffered from “diabetic burnout”, usually more than once.  Recent blog postings by parents have even told heartbreaking tales of children as young as 5 “not wanting to be diabetic anymore”.

Yes, you have to do the best you can, but there are times when your best just isn’t good enough.   There are times when we HAVE to cry about it; when we have to vent.  Talk to other people who get it, who honestly understand; those who are walking the walk.  You, sir, I believe are merely “talking the talk”.

If we’re not optimistic at an appointment; would you chastise us for it?  Add yet more guilt and feelings of failure?

Overall, you don’t seem to see past the physical aspects of diabetes.  For me at least, the stress, guilt, depression and isolation of diabetes has really been what made me suffer with this disease.

We are more than a grade, Doctor, and I would challenge you to take that into consideration when dealing with diabetic patients in the future.  Especially ones who may be remembering how they were “graded” for a very, very long time.

How about a few tips from those of us out here actually doing it?  Just a suggestion…

Diabetes is nothing like a poker hand.

There are no “flops”, no “bluffs”, no “folding”.

We are always “all in”.

We “ante” with our lives.

 

©2011 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com