A Disturbing Search

I’ve thought for a long time that every diabetes diagnosis & treatment regimen should include counseling right along with the medications and the medical professionals that will come and go during our lifetime with diabetes.  In fact, that should be the case for any chronic or life-altering health situation.

I’m doing that now and I’ve put myself out here as someone who is clinically depressed and diabetic.  Granted these postings mostly help me, but I also hope that my discussions can help people know it’s OK.  It’s OK to seek help when you or a loved one has diabetes or any other chronic condition for that matter.  Non-health related life-changing events can also use some help sorting out now and again.  That’s OK.

Because, dammit, life is hard enough and diabetes is another layer of stress, anxiety, fear, anger, frustration all rolled up in a little thing we call our lives.

It’s OK.

I’ve always felt as a diabetes advocate I have a responsibility to tell it like it is and to show that you don’t need to be a “perfect” patient to have a long, fulfilling life.   Depression has always sapped that “fulfilling” portion of my life and that is what I want to change now.

Putting it all out here about mental health is uncomfortable, not merely because I am searching for and looking at things that I spent 4 decades hiding from.  And it’s not merely because I am discussing some things that are very personal & private to me in a very open space.  It’s not because there is such a stigma associated with mental health.

Without really intending to, I seem to have moved into a mental health advocacy role as well. And that’s truly uncomfortable because someone, someone I may influence, found my blog using the search phrase:

decided to let diabetes kill me

That’s not OK with me.  I wish I had a way to reach out through that search phrase and find that person.  Try to tell them they are not alone, that what they are feeling is normal, and hopefully help them find what they need.  If you are reading this now, please talk with someone, anyone, even me.  Because it is OK.

I had kind of liked how I was writing about all this, it was helping me put some order to the jumble of thoughts and emotions that are part of this journey.  That search phrase is making me question my approach though.  I guess Morpheus and I will have a topic of discussion next time.

And that’s OK too.

 © 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

Stop SOPA and PIPA

Please click thru to read Gizmodo’s great explanation of what the House bill SOPA, and it’s Senate counter-part, PIPA, are.  They are incredibly dangerous pieces of legislation to the freedoms that we currently enjoy on the Internet.

After reading about it, please click over to Google’s Take Action page where you can sign a petition showing that you are against this assault by the US government, pushed heavily by the MPAA and RIAA.

There is another site with even more information at Stop American Censorship, check it out

* image credit: Gizmodo http://gizmodo.com/5877000/what-is-sopa

 © 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

What Makes A Patient “Successful”?

A while back I received an invitation from a medical professional to participate in a project involving “successful diabetics” who had an “inspirational and uplifting story”.  I asked if they had ever actually read my blog, they hadn’t and after doing so, we quickly agreed that I probably wouldn’t be a good candidate on the “inspirational and uplifting” part, LOL. But I digress.

In this project, success was defined as having no (or few) complications while having a life of family, career, etc…  You know, just like those non-pancreatically challenged folks do.

But that definition of success seemed to center on how many complications a person had, seeming to further perpetuate the stereotype of a person being defined only by his or her medical condition.

I’m sure the end result of this project will be valuable to many people.  I’m all for that, but how do you define “success” in your lives?  Where does diabetes or whatever condition you may have fall into that equation for success?  Does your definition of success change over time?  Change because of events in your life?

I’d like to hear what you all think about this

** This post is my December entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/december-dsma-blog-carnival/

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

You Can Do This, Take 2

Kim Vlasnik at Texting My Pancreas had a great idea:  The You Can Do This Project. The idea is for you to tell your story, either by vblog or blog, about how you do it.  About how you navigate through life with diabetes.  Show each and every one of us that “You Can”.

I already made one submission for the kickoff video, but decided I wanted to do a second one.  Hope you enjoy!

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

 

The You Can Do This Project

Kim Vlasnik at Texting My Pancreas had a great idea:  The You Can Do This Project. The idea is for you to tell your story, either by vblog or blog, about how you do it.  About how you navigate through life with diabetes.  Show each and every one of us that “You Can”.

I’ve written before about depression, burnout and isolation.  There were times in the last 40-odd years when I didn’t think I could do it, times when I didn’t want to, and times when I just didn’t care whether I did or not.  Yet here I am.  You can do this, it’s not easy.  It’s heartbreaking at times.  But you can do this.  You are not alone and that makes doing it so much easier

Check out Kim’s kick off post and video for the You Can Do This project which includes clips from a bunch of familiar members of the online community.

But we can’t wait to hear your story, for you to show us how you do it so we can learn from your experiences.  Remind us that we are not alone in this.

Can I?  Most days.

Can You?  I believe you can.

Can We?  Abso-frickin-lutely.

Below is my full video and it is actually my first vblog.  Kim dragged me kicking and screaming into the vblog age… so blame her.  I do.  /wink

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

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

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

Tools of the Trade

Now, we all use tools every single day..  Looking at my desk, I see car keys, pens, glucometer, keyboard, mouse, monitor, phone, documentation… all things designed to help us do other things,  hopefully easier than we could without them; that’s what tools do.

And, when it comes to diabetes, there is another set of tools that are made available to us.  These tools are readily available via the internet and traditional media outlets (TV, print, radio).

What kind of Tools are these you ask?  Are you already using them?  Well, as my friend Kelly over at Diabetesaliciousness™ described in discovering one such tool, I certainly hope you are not.

The Tools I am discussing are the Tools that insist in preying on the fears and hopes of people with diabetes, and other chronic conditions as well I’m willing to bet.  These Tools keep touting their latest “cure”, their latest way to “reverse” diabetes.

Every time one of these Tools gets spotted in the wild, someone will call them on it.  Often triggering more and more torque to the situation; hoping to give these Tools a clue.  Hoping to at least help them learn to use the words “control” or “manage” instead of “cure” or “reverse”.

These Tools are liars, predators of those who may be looking for a glimpse of hope, something to hold on to as they navigate through a lifetime of stress, worry, idiotic medical professionals and clueless insurance companies.

George recently described his encounter with one such idiotic medical professional over at Ninjabetic, go read it… I’ll wait… <whistles nonchalantly>  Back?   I mean seriously, is it any wonder that the media is full of Tool-inspired stories when Tools like that are around?  There are no telling how many patients have left their Tools appointments just as angry as George was.

A while back, I made a very glib posting about the Reader’s Digest story.  These types of things were just so ludicrous, it was a time when I just needed to laugh it off.  I was wrong, they are ludicrous, but they are no laughing matter.  This post may also seem glib, but applying the word “tool” to an individual or organization conveys a certain slang meaning, which I feel is totally appropriate.  I mean seriously, are the these folks dicks or what?

Hmmm… maybe this post needs a different title…  Tirade of the Tools… Parade of Tools… I don’t know.  oh well, you know what I mean, dontcha?

I guess it’s up to us to keep calling the Tools out when we see one.   Walking the wall, so to speak.

Hey Tools!  Yea you!  Not on our watch.  Punks.

Scott

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