Diabetes and Fame

May 28, 2010 — Scott

There have been quite a few celebrity diabetics in the news lately.  The stories usually mention that they have diabetes and my usual response to that portion of the story is “so what?”.  I wouldn’t vote for a someone simply because of their race, party affiliation, hometown or military record,  so why should I vote for a person simply because they are diabetic?

Somehow, that thought makes me feel like we, as diabetics, require some type “bonus”, like being spotted three strokes in a round of golf.  I just resent that whole concept.  I am not talking about things like the American with Disabilities Act or reasonable accommodations at your workplace or school, I’m talking about the stories that make it seem so “incredible” that these people could be so successful and have diabetes.  Those stories make it seem totally unheard of that a diabetic can achieve things.  Not to mention how so many folks seemed to just go gaga over them simply because of their diabetes.   

For example, when Bowersox and Michaels were recently in the hospital, there was a large outpouring of support from the diabetes community.  There’s nothing wrong with wishing people well, but would it have crossed any one’s mind if they weren’t diabetic?  Would the “Let’s Root For…” posts have occurred? 

And do I believe that they should take on some kind of advocacy role simply because they are diabetic?  Absolutely not, that is a personal decision and one we should not try to force or “guilt” them into.

The thought that keeps crossing my mind is that they are bringing additional attention to diabetes, which is OK, I guess, though I feel a bit like we are “using” their condition for our purposes.   

And that just bothers me at a very fundamental level.

Today’s snarky comment: If you are going to post something that may piss people off, the Friday before a holiday weekend is the perfect time to do it.

Posted in dblog diabetes. 7 Comments »

Survival of the …

May 25, 2010 — Scott

I never really liked being called a “survivor of diabetes”. To me, survivor implies that it is over. You survive a fire, car crash, falling off your roof.  As I wrote my last entry, A Bitter-Sweet Experience, I started thinking about the saddening stories that are so prevalent with diabetes.

People who didn’t discover their condition until serious complications had already set in.  People, who despite busting their butts, get complications anyway.

I deserve to have complications; there were so many years where I was not in control. Honestly, I should. But I don’t. Why not? No one knows, maybe my genetics include something that allows me to avoid micro-vascular damage, maybe it is just a cruel trick being played on me by <insert diety of choice here>.

What? Cruel? How could I think that? How can I not be grateful that I am so healthy after 4 decades? Well, the longer I live, the longer I have deal with this all day-every day D-crap and that is the reality of it.

Wow, those last two paragraphs were whiney; I’ll stop now as I actually wanted to talk about something else: Guilt.

There can be a lot of guilt associated with diabetes, almost all of it undeserved. I didn’t do anything to give myself diabetes and neither did my parents. I’m not perfect, so I don’t blame myself when I have a high or a low. I don’t feel guilty for not watching or even really caring about American Idol or Celebrity Apprentice, even though diabetics were in the finals of both shows.  Now, if I wasn’t honestly taking care of myself, then I’d deserve some guilt because I am letting my family, friends and, most importantly, myself down.

I sometimes feel guilty though; a particular type of guilt and I am sure it is undeserved as all the others. At times, I feel survivor’s guilt.

When ever I hear of someone who is, despite their best efforts, having terrible complications, it makes me feel sad for them and thier families and at the same time, I feel guilty that I don’t.   Will all of the children I saw at the JDRF walk outlive me or will I outlive some of them?   Again, it comes back to “why me?”   Why do I deserve to still be here?

Honestly, I think the answer is probably “why not you?” and I truly wish that answer applied to everyone

Posted in dblog diabetes guilt. 7 Comments »

A Bitter-Sweet Experience

May 24, 2010 — Scott

This past Saturday, I was able to attend my first (yes, first) JDRF walk in Springfield, MO courtesy of the Ozark Chapter of the JDRF.   This is only the second walk in Springfield, Jessica Hickock was the event organizer and got the whole ball rolling in the first place by actually founding the Ozark Chapter.  Over the last two years, this event has raised $75,000 for the JDRF so kudo’s to Jessica and all the great volunteers who have made these events a such a great success.

Now onward to my bitter-sweet explanation

Sweet – I saw young diabetics and thier moms, dads, brothers, sisters, aunts, uncles, and friends coming together to not only raise funds, but to let those children know they are not alone in this life sentence we call Type 1 Diabetes.

Bitter – I saw young diabetics and thier moms, dads, brothers, sisters, aunts, uncles, and friends still having to come together to not only raise funds, but to let those children know they are not alone in this because T1 is still a life sentence.

One of the better moments was a lengthy conversation I had with Paul Zizmang, director of the JDRF Ozark Chapter.  I came away from that conversation with a different take on the JDRF than I started the day with.
 
It seems to me now that we are indeed fighting the same battle, just on different fronts. Maybe the disconnect occurs when we (as diabetics) keep seeing requests for more but it is so hard for the JDRF to offer quantifiable results for those efforts to us.
 
Perhaps it is our respective definitions of the word “quantifiable” that is the basis for the disconnect. 
 
From my perspective, to the JDRF, quantifiable may very well be defined as “producing results that can help us progress towards a cure.”  As we all know, it can take years and billions of dollars for a treatment to work it’s way from a clinical trial to getting final approval.

For me, as a diabetic, quantifiable is defined as “when can I put my hands on it?”  When can I take all the diabetes junk strewn around my house and life and reduce it to a smoldering pile of melted plastic and glass in a fire that would make the folks at the Burning Man festival jealous?
 
As a diabetic, I’ve been hearing that the cure is “just around the corner” since before the JDRF was even founded (by about 3 months, so just slightly before /wink). After a while, you tend to just filter out those things. The who “Boy who Cried Wolf” effect is strongly in play when I read the various announcements.
 
The JDRF’s frontline is fund raising, while my frontline is my daily care. On my right flank is the future, when will complications arise? While my left flank faces the daily stress and worry. Luckily, the DOC provides excellent reinforments on all three fronts.

I’m hoping that the JDRF has my rear flank covered and perhaps they do.

Posted in dblog advocacy jdrf diabetes. 9 Comments »

Advocacy and Me

May 19, 2010 — Scott

As I become more and more involved with the DOC, I see alot of folks performing some great advocacy work in regards to fundraising.   And as time goes on, I get more and more items of “writing letters for funding” or “contributing for the cure”.  And while those are important things, I feel it’s a little like preaching to the choir. 

For me tho, I honestly have no interest in fundraising.  I couldn’t sell a glass of water to a thirsty man in the desert without throwing in free ice and a ride to the nearest oasis.  

I can contribute my time, but I already spend several hours a week as an admin on TuDiabetes plus trying to keep up with the various D-Blogs I’ve come to like.  And then when I throw in the thought of all the effort I expend on D-things in any given day… I’m sorry, but my d-docket is pretty full.

In general, I rarely contribute to fund-raisers because I can’t contribute to all of them, and feel guilty when I don’t contribute to one cause or another.  I’m at the point where I don’t even want to get the emails any more, which is why I unsubscribed from all the ADA emails a few days ago.  

Every email I was getting from the ADA was “wanting” something.  Here I am, a diabetic in Kansas City, who rarely hears of anything local involving the ADA, or the JDRF for that matter, being asked to give even more than D already drains from my very essence every day.

At least the JDRF has finally acknowledged that adults with T1 need programs as well.  Thier recent Toolkit had a lot of great info.  But it was still directed primarily at the newly diagnosed.  Those of us that have been doing this for decades have different needs.  I feel as if we are still somewhat left out. 

We need to just be able to get together, whether we even talk about diabetes or not.  It is so comforting to know that you are in the presence of people who are not going to judge you, not going to lecture you.  Folks you can honestly make an instant connection with because you have something in common that is so in-grained, so intrinsic to you all.

Sites like TuDiabetes and twitter make this so much easier.  You can find others so much more easily than you could even 5 years ago.  Now this is where I gave the JDRF Toolkit a failing grade.  It mentioned thier own site, Juvenation, but didn’t mention that any other sites even existed, let alone name any.   

The latest newsletter from the KC JDRF Chapter has an article titled Let’s Meet: Calling All Kansas City Adults With Type 1 but nowhere in the article does it tell you how to actually join up.  Or when and where such a meetup might be?  I mean come on, you offer exactly what is needed and have no infrastructure in place to actually do it?  Makes the adult outreach seem pretty hollow to me.

Maybe I’m just jaded, feeling angry about thinking I was alone in all this for so many years.  Honestly, tho, I just feel that I personally have little use for the national organizations.  They seem willing to use me for funding but offer so little in return that can improve my life on a daily basis.  And I dearly hope that a cure can be found so noone else has to go thru this.  Even if it was some type of “vaccine” and wouldn’t cure me, I’d be pleased as punch if it would prevent anyone else from ever having to live with this.

For me, advocacy has to be about directly working with, talking to, listening to, and learning from the people that I can maybe help in some small way.

Today’s snarky comment: Scott, quitcherbitchin, k? thx

Posted in dblog advocacy ada jdrf tudiabetes. 7 Comments »

To carb or not to carb

May 13, 2010 — Scott
See the full list of Diabetes Blog Week Participants

As part of Karen’s fantastic idea for a DBlog week, day four’s topic is about carbs.

As I also have insulin resistance along with my T1 (best of both worlds!!), I have restricted my carb intake which usually ran over 200 a day to about 120 now.  This along, with Symlin, has helped me lose weight, reduce my insulin resistance and reduce the amount of insulin I need on a daily basis.

Symlin is an injectable drug that helps keep your glucose levels stable after meals by doing a couple of things.  First, it makes you feel like you have eaten enough much sooner that you would without it.  Secondly, it slows down the digestion of your foods for a couple of hours so you can avoid the after meal spikes in glucose levels. 

Of course there are trade-offs; the fact Symlin can make you nauseous seems to be the biggest for me, but I was able to get over the nausea after a few days.  The way it makes you feel full can make you stop eating before you’ve consumed all the carbs you just dosed for, so you have to watch for lows until you get used to it.

I’ve lost about 30 pounds since starting it, mostly because it helps me limit my portion sizes so I am just not eating as much.  And there is a trade-off here as well; as my weight dropped, I would hit a point where my insulin resistance and sensitivity would drastically change.  These changes would cause me to chase lows for a couple of days while I “re-tuned” my pump settings.  This point seems to occur every 5 pounds or so, annoying and frustrating, but worth it overall.  I am currently hovering right around one of those points so I am trying to loose a few more pounds to get to a somewhat more stable condition

Today’s snarky comment:  Please don’t interrupt me when I’m talking to myself.  It’s the only intelligent conversation I get most days.

Posted in dblog diabetes carbs. 5 Comments »

My Biggest Supporter

May 12, 2010 — Scott

As part of Karen’s fantastic idea for a DBlog week, day three’s topic is about my biggest supporter.

That’s a really hard question to answer for me.  Until I discovered the DOC (Diabetes Online Community), I didn’t even realize that I actually needed support.

My folks grew up during the Great Depression, Dad was a WWII vet and mom was a WWII army wife.  Basically, when things happened, you just dealt with them, so that has been how I’ve approached my D for the last 40 years.  And that is not to say that my folks didn’t support me, it was just that it was an implicit support, not an explicit, overt type of support.

Also I didn’t know any other T1s.  I’ve literally met more diabetics in person during last six months (since WDD 2009) than I had in the previous 40 years.  Let alone all the online folks who have crossed my path.

This is going to be another short & sweet one. I would have to say my biggest supporter has been the DOC.

Todays snarky comment: Dude, seriously? Dude.

Posted in dblog diabetes support. 4 Comments »

Making the Low Go…

May 11, 2010 — Scott

As part of  Karen’s fantastic idea for a DBlog week, day two’s topic is about treating lows.  Personally, my favorite treatment is mini-Snickers bars, but I’m not adverse to orange-flavored glucotabs either.

But the hard part about treating a low for me is realizing that I’m having a hypoglycemic incident.  I don’t have the classic symptoms anymore.  I have a CGMS and that helps immensly as it has allowed me to have instant feedback so that when I see a low number, I can make note how I feel, to retrain myself to recognize them.

About the only symptom that I have is that I will lose the ability to concentrate, which makes it hard to realize that I am like that when I am low.  So I basically, still have no symptoms, lol.  The worst ones are the ones I have when I am sleeping, I’ve regained consciousness a few times after having a severe low. 

The lack of concentration can also make getting some carbs a bit of a challenge.  If I’m low enough, I’ll walk in the kitchen and then just stand there.  I know I came in here for something, but what? 

My personal record low that I saw on my meter was a 29

So that’s the post for today, short and sweet…

Today’s snarky comment:  Please be quiet.  I’m hiding from the stupid people

Posted in dblog diabetes hypoglycemia. 3 Comments »

A day in the life . . . with diabetes

May 10, 2010 — Scott

As part of Karen’s fantastic idea for a DBlog week, day one’s topic is about a day in the life . . . with diabetes.  Now I can really be a lazy blogger on this one, because I posted about this very subject not too long ago, so here is part one of that three part series

An Understanding – Part I

As a PWD (person with diabetes, Type 1 in my case), there are certain things that I do everyday without really even thinking about them. Having been diabetic since 1970, to me, anyway, diabetes is like having blue eyes and brown hair. It just is. Tho, thinking of it that way can cause issues because D has to be managed every day, all day.

That is something that a person without diabetes just can’t truly understand, even as much as they want to. Sufferers of other chronic conditions can get a glimmer of it, I’m sure. But I know, as a diabetic, that I have no idea of what it is truly like to have a condition like rheumatoid arthritis, lupus, hashimoto’s or any of the multitude of other conditions that people can be afflicted with.

When I was 7 years old, I learned that I had a disease. I would always have this disease and it would kill me. Kids are often smarter than given credit for, so even tho parent’s want to protect their KWD’s (kid’s with diabetes) from stories of complications, given today’s media stereotypes, that is just impossible to do. So from an early age we learn that we can go low in the middle of the night and maybe have a seizure and possibly die. We learn that DKA (diabetic ketoacidosis) can put us in the hospital for days and possibly even be fatal.

And it is not only media, but friends. Will parents not want this KWD to be invited to a sleepover? This can be a very solitary disease

We learn that managing diabetes is much more an art than a science. We learn that it is like holding the ball on the 50-yard line. While balancing on one foot. With our eyes closed. You know you are eventually going to get hit, but you don’t really know from what direction it is coming. Did I mention the monsoon we’re standing in?

My first thought when the alarm going off in the morning doesn’t involve the snooze button, it involves me asking myself how I feel. Do I feel low? Do I feel high? Grabbing the CGMS to see what it says.

Disconnecting everything to shower, checking my feet, remembering to reattach everything, making sure my meter is in my backpack along with extra pumping and testing supplies and testing my levels before I walk out the door. Am I low, do I need to some carbs before I drive or can I go ahead and just bolus for the 30 carbs I’m going to get at the McDonald’s drive thru?

In case you haven’t noticed, I haven’t even left for work yet.

The day at work is much like anyone else’s; stressful at times, meetings, deadlines. Will this high-stress situation drive my sugars up and will I correctly compensate for it?. Is the meeting at a time when it is not too unusual for me to have a low? Do I need to eat some carbs before? How will an approaching deadline affect my schedule? Will I miss meals? Work odd hours?

All the while monitoring my condition. Are my numbers reasonably normal for that time of day? Are they high? Did I miss my carb count or do I need to change my pumping site? Are they low? Did I miss my carb count, have a little extra exercise or has my insulin resistance and/or sensitivity changed? Are the highs and lows happening at the same time for a few days in a row? Do I need to start making small adjustments to carb ratios, basal rates and/or insulin sensitivity? Are the lows dangerous enough that I need to make some big adjustments to get my numbers high and then tweak settings to bring them down or are they minor enough I just tweak to bring them back to a normal range?

Hmm, business trip in a couple of weeks? Make airline and hotel reservations. Can I get by with just a carry-on? Pack travel size toothpaste, deodorant, enough pumping and testing supplies. Will I have trouble with security? Do I have my doctor’s note, copies of current scripts? Does that state allow syringes without proof of prescription?

Will new people I meet care that I’m diabetic and what diabetic horror stories will they tell me? Do I let those stories slide or let them know what I really think about hearing that?

How much will I miss my carb count by when I go out to dinner with friends? Will the restaurant have carb info on all their meals? Are they even remotely accurate? Should I test in the car or when ordering? How long will it take the food to arrive? Should I bolus when ordering or when my meal arrives? Remember to pick test kit up off table before leaving and test before driving home.

So now I’m home for the evening. Like everyone else, we PWD’s deal with all the other things in life that non-PWD’s have family, work, friends, hobbies, bills, taxes, favorite shows, telemarketing calls, what’s for dinner? How many carbs will be in that?

Why am I having trouble reading right now? Is my sugar low? Yes it is, that’s right! I suffer from hypoglycemia unawareness. Why didn’t my CGMS alarm? Because it has gone to ??? status (and doesn’t alarm when it does) so it shows no reading. The meter shows 42. Will 15 carbs be enough? Am I actually capable of getting to the carbs? How much insulin do I have on-board? Is this low a reaction to a bolus at mealtime or a reaction to a basal rate that is too high? Or is it just one of those WTF moments where there is no explanation?

Did I get my sugars back up? Or am I still chasing this low? Did I have too many carbs? Will I go high? If I did, do I want to correct before I go to bed? If I do correct, should I trust my CMGS to go off or set the alarm to get up and test?

Now I lay me down to sleep, I pray the Lord my levels to keep.

Here are the links to An Understanding – Part II and An Understanding – Part III

Today’s snarkly comment: Do you know the difference between a Wise Man and and Expert?  Whenever there is an emergency, the Wise Man will run as fast as he can to find the nearest Expert.

Posted in dblog diabetes. 2 Comments »

Recently I’ve been thinking…

May 7, 2010 — Scott

Note:  This is a repost of a blog I originally wrote over at TuDiabetes in July 2009

Recently I’ve been thinking…
A dangerous pastime.
I know.

Always thought Beauty and the Beast was one of the better Disney films…

Anyway, a lot of the recent blogs and discussions that I’ve been reading around the D blog-sphere have gotten me thinking a bit more about my situation and, in particular, the way I feel about diabetes.

I’ve had people ask me about how I feel about having diabetes before and I usually just give kind of an odd look. I’ve had it so long, that while I get frustrated with it some times, I also get frustrated that I let myself get sunburned a few weeks ago. Like the color of my eyes, it just is.

Then I started thinking about what I remembered as a child finding out I had diabetes. About the only strong memory I have from being diagnosed at age 7, was that I had a disease. I would have this disease the rest of my life and that it would probably kill me by the time I was 25. It was “the sugar diabetes” and it was all bad.

I doubt that was a conscious decision, but I think I stopped dreaming about my future goals somewhere in all that.

I used to say I was going to be a fireman or an astronaut when I was a kid, as so many do. But after I got D, I have no memories of ever having that type of dream again. Even as I became an adult, I never really reached for anything for myself. I seemed to be living in the present only. Having children changed that some because, as any parent, I want my children to have a better life than I’ve had. I’ve always worked hard to give them a good life and have been rewarded for that work, but I never really had a goal of being in management, it just happened. But besides that, I really have no interest or even desire to really dream for something past the day-to-day we all go thru. Maybe, I have a subconscious dream to see grandchildren or just to outlive those folks who told me that all those years ago.

Today, 20 years after I was supposed to be dead, I find a reason to get out of bed every day (mostly because I don’t want to be jobless, living under a bridge in a box). But everyday, I fight a battle. At best, that battle will end in a draw. But, realistically, I’ll probably lose. Yet, it goes on, I’ll be fighting for another 20 years, I simply do it. But I think I’ve lost the ability to have those dreams. I’m sure my depression has alot to do with this as well, and in fact, my depression may largely stem from being told those things. I don’t know.

I’m not even sure why I’m writing this or if I’ll even publish it. I guess it’s therapeutic, maybe I’m just too pragmatic. Life seems to be a long series of compromises. Maybe my compromise for diabetes was that I’d stop worrying about my dreams so I can worry about today.

Don’t make that compromise.

Today’s snarky comment:  I’d love to offer some moral support, but my morals are… well… somewhat questionable

Posted in diabetes depression dreams. No Comments »
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