Is There a Civil War?

** There’s been a lot of conversation about the Civil war: Diabetes vs. diabetes article by Julie Deardorff that originally appeared in the Chicago Tribune.   One of the contributor’s was David Edelman and his post on Diabetes Daily, Which Is Worse? My personal reply to that thread was “The worst kind? That’s an easy one. It’s whichever type affects you or a loved one.”  So here’s my take on the whole thing…

Is there a Civil War? Yes and no.

The basis of the rift is the same as any bias or prejudice:  Ignorance.

While T1 and T2 both have the same basic symptoms and long-term prognosis if not controlled, the treatment regimens can be vastly different between the two types.

Most people learn about diabetes from the media (news, entertainment, opinion) and what they learn is very stereotypical. Diabetics are fat and lazy and it is their own fault.

When someone gets a diabetes diagnosis, either Type 1 or Type 2, that is pretty much all they know. They can easily end up feeling guilty for doing this to themselves and the stigma that the stereotype causes can make them isolated, not wanting to talk about it.

And that stereotype is totally incorrect. The cellular changes that cause insulin resistance in T2 can be detected years before the diabetes presents itself. The insulin resistance causes weight gain, so obesity is a symptom, not a cause. The general public doesn’t understand that just because there is a correlation between two things, that doesn’t mean that one causes the other.

And T1 is an auto-immune disease where their own body destroys the insulin producing cells in the pancreas.  Eating too much didn’t cause that type either.

With the stereotypes so firmly in place, any diabetic may feel stigmatized.  And a newly Dxd T1 may feel unfairly grouped with those “fat and lazy” T2s.  Wars have probably been started over less.

What a T1 may not know about a T2 is that controlling T2 requires lifestyle changes to exercise and diet, which are extremely difficult to accomplish (especially if you are not getting support), along with medication.  Seriously, how many New Year’s resolutions did you just recall reading that?

What the T1 sees is a T2 taking a pill or being very upset that their fasting glucose level was 140 this morning. To a T1, a pill is much easier than insulin and a lot of us are plenty happy with waking to a 140. However, what the T1 doesn’t see is that 140 IS a big deal to that person.  They don’t see the effort it takes to change diet and exercise habits.  Working so hard and then seeing a higher than normal number.

Coming from the other direction, a T2 may see T1s talking about counting carbs and just dosing correctly; i.e. T1s can eat anything they want. What the T2 doesn’t see is that is an ongoing juggling act that will never end.  And while T1s can adjust doses for food, there are risks associated with that.  A T1 can miscount or just calculate their dosage wrong; ending up in a potentially dangerous low (hypoglycemic) or high (hyperglycemic) episode.

When talking about meds, if a T2 skips a dose for a day or two, their numbers run a bit higher than normal.  For a T1, skipping meds for a day or two is FATAL. I’d probably be dead by this time tomorrow if left untreated.

So the T1 doesn’t see the same urgency in the T2 world. What the T1 may not see is that many T2s are only diagnosed after complications have already begun and, since there is not that same urgency as in the T1 world, it can become even harder to make those already difficult lifestyle changes.   The complications may not be evident yet, “I’m not having any problems. I’ll worry about it later”.   And then later arrives with irreversible damage done.

There are a large number of T2s who do take insulin, usually large amounts due to insulin resistance. It is usually a long acting version and since their bodies are still functioning “somewhat normally”,  low blood sugar incidents are relatively rare, but they are know to happen.

Blood testing is another area where there are differences. As a T1, intensive insulin treatment requires intensive glucose monitoring to be successful; i.e. avoiding both low and high glucose levels. So testing 6 or more times daily is not unusual.  A T2 may not require that much, and probably doesn’t. Testing first thing in the morning and a couple of hours after a random meal is probably good enough on a daily basis, but I’m not a doc so don’t quote me on that!

I’ve witnessed several of these spats and used to be a “T2 bigot” myself. Once I understood the differences AND the similarities between the two groups, I was able to put that prejudice to rest.

I do believe that it was a grave disservice to all diabetics when both conditions were called diabetes.  And while I see the logic in renaming Type 1, I wonder if that wouldn’t make things more confusing.  Someone at a higher pay-grade than me is going to have to make that call.

As I’m finishing this up, I bet 99.9% of the folks who read it already know this and I’m just preaching to the choir again.  (hmmm… seems I do that a lot).  I hope that Julie’s article can lead to more media awareness.  Media education is an area that I would like to see more activity from the national organizations.

But even if the JDRF and ADA both put out press release after press release,  write letters to the editor of every myth published, you have to wonder how much good that would actually do.  You can lead a publisher to a story, but you can’t make them print it.

It may just be that correct articles about the similarities and differences between T1 and T2 just isn’t “sexy” enough unless the horrible complications are the topic.  “If it bleeds, it leads” seems to be the mantra.

You don’t see many stories about people who have lived decades with T1 or T2.  They don’t have articles that show the incredible effort and dedication that it takes to survive.   They don’t show all the balls being juggled on a daily basis for the rest of our lives.

I sometimes wonder if we should just forget about what myths are still being pushed.  Maybe turn our attention to the vastly growing audience of diabetics and make sure that they understand the differences.

Make sure that they understand what diabetes is and isn’t, helping them overcome their fears and guilt that have been spawned by the myths and a diagnosis.  Empower them to take their local media outlet to task when some senseless drivel is spewed forth.

Perhaps then enough attention can be drawn to the harm these myths do and thereby lay them to rest.

© 2010 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

It’s the Holidays and We All Know What That Means!

** This post originally appeared on Ninjabetic’s blog as a guest post on November 22, 2010.  Posted here simply for archival purposes

When George, aka Ninjabetic, asked if I’d be interested in doing a guest post, I was more than happy to oblige.  George is one of those guys you can form an instant bond with and I consider him to be a close friend.  His ability to find enjoyment in something  at any given moment is amazing.  As is his love of bacon, but I digress…

As the holiday season closes in upon us, we are once again thrust into 5 or 6 weeks of insanity.  I try to not even leave the house on Black Friday, do 90% of my shopping online and will seriously consider severing my own foot to avoid having to set it inside a shopping mall.

Lots of foods and goodies around and stress of wanting everything to go right during the holidays can make for a few weeks of being constantly on the ol’ glucocoaster.  And that’s ok.  We’re not perfect and shouldn’t expect ourselves to be.

And the D-police we’re bound to run into? Most of them just want to help so,  after you get them to pass the yams, try to have a brief, but insightful, conversation about why you CAN eat that.  And if that doesn’t work, feel free ask them “Why are you still talking?”.  Maybe take a stack of the Diabetes Etiquette Cards from the Behavioral Diabetes Institute along with you to hand out at the door?  Tell folks there WILL be a test at about the time the turkey overdose starts to kick in.

Other folks get stressed this time of year too.  Try and remember that a simple “please”, “thank you”,  “can I help?”, holding a door open for someone, or just a “Merry Christmas” can go a long way.  It really can be just the littlest thing this time of year that can at least give a brief respite to the constant turmoil the holidays can bring.

Well with all that being said I wish you all a correction-bolus free holiday season with much warmth and joy for you, your loved ones and friends.

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After the Pat Down, Not Even a Text Message

Last week I wrote about my adventures on a horrendous diabetes day from hell. One of the comments, well actually two, made by the TSA agent who frisked me got under my skin and I felt the need to expand on them.

The first comment I’ll expand on was actually his last comment to me.  He said “If we had been doing this last year, the underwear bomber would never have gotten on the plane.”  Now that flight originated in Amsterdam, and while I know there are TSA agents in  Vancouver, I really have no idea if there are some stationed in Amsterdam and there may be.  I didn’t point this out or ask him if there were and really just wanted to get going, but the manner in which he said it annoyed the holy beejeebus out of me.

He stepped right up next to me and said it, attempting to project power, much as a police officer would with someone not cooperating.  I didn’t flinch away and turned my head to  look right back at him, projecting my own subzero tolerance  for bullsh** and said “Right”.  I then just ignored him and eventually he went away.

The other comment was after I said I didn’t like being singled out simply because I wear a medical device. He said that he understands and imagines that all other device wearers feel the same way.

Well first of all, unless he wears such a device and has to deal with this, he does not understand.

And then when he says that he imagines that all other device wearers feel the same way, that does not make me feel one bit better.  As a matter of fact, I start to get angry; which, I’m sure, led to the comment I discussed above.

The reason I got angry is that there are now thousands of people who will be undergoing this same humiliating process everyday.  Not having to endure it because of some suspicious articles or “profiling”, but simply needing a device to stay alive.

If, instead, he had said “I’m sorry, sir, but this is my job and this is how we have to do it now” I think I would have reacted totally differently.  I wouldn’t have thought about the thousands of other people; even though I totally should have.  It would have been just him and me.

We all live with an enormous amount of bullsh** that diabetes adds to our lives.  Emotional, mental, physical, financial, insurance, glucocoasters – all of them able to happen to us at any given moment.  Now I have to add an extra layer of bullsh** from my government anytime I want to get on a plane.

I really try not to get political on my blog, but I just don’t see how I can avoid it on this one.  Isn’t our elected government supposed to be scared and intimidated by its citizens and not the other way around?

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On the Road with the Big D

I travel for business a few times a year and this past week was one of those times.   So, sports fans, I got to experience the new TSA Full Monty Booty Body feel-up pat down techniques up close and personal!

Now, while I am sure there are some over-zealous friskers and overly hysterical friskees, what I experienced was pretty much what the TSA describes on their site.  Going out of town on Monday morning, the pat down didn’t really bother me, but Thursday I was annoyed by it, because it had all ready been a hellish long D day.

I packed 3 insertion sets for my 4 day trip and I’m glad I did.  Tuesday evening was time for a normal site change, no big deal.  Wednesday morning, I was a little higher than normal, I corrected and really wasn’t hungry, so I skipped breakfast.  2 hours later, my levels haven’t even budged so I correct again.  Come lunch time, I’m starting to go up, so time to change it out.  I reach into my backpack, where I always keep my pumping supplies only to realize the ditty bag that contains them isn’t there. Instead, it is setting on the desk in the hotel where I left it the nite before.  So run to hotel, swap site, grab some lunch and head back.  Later that afternoon, my numbers are much better and after dinner I’m good so to bed I go.

Now on to Thursday. Oh joyous, joyous day.  Waking up, I’m at about 180, usually wake up in the sub-100 range, so the diabeety-sense starts to tingle.  I correct and bolus for the breakfast I had and off I go.  Couple of hours later, pushing 300?  I’m all WTF?  90 minutes later, I find myself getting sleepy.  Yep, you guessed, now I’m at 390.  I try one more bolus since I only have one set left.  30 minutes later it’s 450. %@$#^@&.  Pull the old set out, which of course bleeds like a stuck pig.  Put new set in, Rage Bolus and try to finish up work before I need head to the airport.

And as we all know, there is nothing more fun than the Rage Low that often follows a Rage Bolus.  I test before I leave for the airport, 55.  Pissed, I say screw the glucotabs and get a Snickers.  15 minutes later, I’m at 70.  This whole time the Dex has pretty much been displaying WTF? the ???…

Drive to the airport, check in car.  I had just filled it but Avis wants to charge me for a top off fee unless I can show them a receipt.  Gee, wouldn’t want the guy to have to actually look at the gas meter and see it is on full, would I?  Quite the scam they are trying to pull there.

By this time, my tolerance level for bullsh** has reached ZERO.  Inside, I put all my stuff on the conveyor just as I’m supposed to.   Walk to the gate, display my pump to the TSA agent, she motions me thru the metal detector and calls on the radio that they will probably need a male search, before the damn Ping sets the detector off.  While waiting for the frisker, I hear the agent at the x-ray call out “Random” and see her pull my backpack out for a “random” search.    Tolerance level drops to well below zero as I am escorted to identify all my belongings which are then lugged by the agent to the area where I will be “aggressively” frisked.

First I have to handle my pump and then my hands and various belongings are swabbed to be scanned for various residues.  He then comes over and starts to explain what is going on.  I explain that I understand and let’s just get it over with, because I am a bit agitated for being singled out for the sole reason of needing a medical device, not to mention how the rest of the day has gone so far.

He says he understands and imagines that all other device wearers feel the same way.  I guess that was supposed to make me feel better, but somehow it really didn’t.  He then goes on to to tell me that he is required to fully explain the process, so I have to sit there and listen to him tell what I already know, I probably should have explained the process to him before he got started.  By this time, I just have a slightly disgusted, impatient look on my face and make an effort to keep it at that level.

The frisk is uneventful, as was standing there putting my shoes and belt back on, gathering all my stuff and walking past the lines of people who had watched the whole deal.

But wait!! That’s not all!!  I buy a Diet Coke and sit down and start reading, well trying to read anyway.  I finally test again and I am right back at 60, the Dex is showing 75 with a trending down arrow.  Now I’m pissed.  I grab 2 granola bars, loaded with simple and complex carbs and go to town.  30 minutes later, I’m at 180 and the Dex goes off with a Double Up Arrow alarm.  I literally looked at it and went “F*** You”.

I wait another 30 minutes and test, I’m at 230, Dex is showing a level arrow so I attempt to correct.  I’m at 190 as we board the plane to Memphis and 140 when we land.  I ate dinner and landed back in KC at 110. Final-effin-lee.

I understand that the world we live in today requires such measures and I really don’t usually mind submitting to such things if it can stop some cowardly asshat from making the news, but the totality of that day made it almost unbearable.

I probably could have disconnected the Ping, maybe I will next time.  I’m honestly anxious about sending it thru the xray machine, not to mention letting it out of my sight.

The TSA used to have a program where individuals could have background checks run and receive passes to avoid extra security.  Maybe it’s time for something like that for those of us whose health may always get us pulled out of line.

6 things I DON’T want you to THINK you know about diabetes.

It’s November 9, Dblog Day! This year’s topic is 6 things you want people to know about diabetes, but I jumped the gun and did that topic yesterday, so here’s today’s variation!  Check out Gina Capone’s site for other lists!

6 things I DON’T want you to THINK you know about diabetes.

  1. Don’t think insulin is a cure.
  2. Don’t think my diabetes is my fault.
  3. Don’t think you should give me dietary advice.
  4. Don’t think I want or, even worse, need to hear your personal tale of diabetes horror.
  5. Don’t think that it makes me feel better to hear you say “At least it’s not <insert other condition here>”
  6. Don’t think that diabetes is easy

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6 things I want people to know about diabetes

It’s November 9, Dblog Day! This year’s topic is 6 things you want people to know about diabetes and check out Gina Capone’s site for other lists!

  1. Diabetes is not a death sentence, it is however a life sentence that requires constant attention and dedication.  It is one of, if not the most demanding of patient managed conditions on the planet and if I don’t take of it; it will “take care” of me.
  2. Unless you are going thru this yourself, please keep all your clues to yourself… not that you’d really have a clue in the first place.  And you’d probably be clueless about not having said clue.
  3. Managing diabetes is more art than science.
  4. There are two major types of diabetes, both have similar symptoms and long term prognosis, however both have different treatment methods and causes.
  5. I have Type 1 diabetes and no matter how much I exercise and how well I diet, I will be dead by tomorrow without an external supply of insulin.
  6. Never, ever tell me you are going to cure me unless you want me to go all medieval on yer a$$ (ha! spelled it right that time!)
http://diabetestalkfest.com/blog/?page_id=29′s

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What Social Media Has Done for Me

** This originally appeared as a guest post at Diabetes Social Media Advocacy on November 6, 2010 and is re-posted here for archival purposes.

When I was asked (thanks Cherise!!) to write a guest post at Diabetes Social Media Advocacy for National Diabetes Month, I was more than happy to do so.  I tossed around a few ideas, but decided that it was probably best to write something about social media since that’s what we’re all talking about here.

I had been using the internet since the early 90′s for information and news , but had never really used it in a social context other than email.  I initially saw some online diabetic news articles five or six years ago and started to keep tabs on diabetic news.  I think the first “official” blog I started reading on a regular basis was Diabetes Mine, but that was just “news” for me as well.

It’s been about 2 years since I first ventured into the Diabetes Online Community (DOC).   My adventure began when I was researching insulin pumps and I found TuDiabetes.  Lurking for a couple of weeks before joining in,  I was immediately welcomed and accepted by the community, which, it seems, the DOC is famous for.

I was diagnosed in 1970 at the age of 7.  My parents grew up during the Great Depression.  Dad was a WWII vet and retired as a Command Sergeant Major from the US Army in 1968, mom was an army wife and, at 87, can still kick my butt!

It was a different time.  People didn’t talk about their “conditions”.  Sometimes life was just hard and you dealt with it the best you could.  I’ve been pretty much managing my own condition since I was about 10 years old.

Now where I am going with this was that I was very isolated in this.  As the months turned into years and the years into decades; the long term physical, mental, emotional, financial stress was taking it’s toll on me.  The fact that these stressors even exist has really only been acknowledged recently.

When I found the DOC I found something that I didn’t even know existed, let alone know that I needed.  I found peer support, people who actually understood and didn’t judge.  I’ve made some great friends and have had a chance to actually meet a few of them, though too few by far.

I had been blogging on TuDiabetes about things but something happened last year that made me want to take on a bigger advocacy role, a role that I had never ever considered for myself.

I was invited to my first D-meetup, a WDD luncheon here in Kansas City that Cherise was going to speak at.  For the first time, I was able to actually “see” that I really was not alone in this.  I met some great people that day; most of whom I manage to chat or have dinner with now and again.  I saw a room full of people struggling with the same issues as I was.  I decided that maybe there was more I could do, that I had something to offer from the last 40 years.

As I began my own blog and started interacting with more members of the DOC, whether it be on twitter or by reading/commenting on their blogs, I realized that there was something that I still needed to resolve with my own attitude toward my diabetes.  I’d managed to get a somewhat decent handle on my lifetime of depression, but there was something more that I really had to acknowledge before I could really move on

It was guilt.  In particular, it was survivor’s guilt.  I had spent entire decades barely taking care of myself and, in all honesty, I should probably have some severe complications by now; if not be dead.

As I was on the web more and more, delving into the very depths of the DOC, I kept seeing stories of people, diagnosed much later than I was, having terrible troubles.  Children passing away.  Loosing limbs, organ failure.  The list goes on.

It wasn’t right.  Why should I outlive someone’s child?  Why should I have some “special gift” to escape complications and not everyone else?

Why me?

After I participated in Lee Ann Thill’s Diabetes Art Day (see the art here and my own response to it here)  something finally clicked into place,  I finally was able to truly understand, in my heart, that the why didn’t matter.

I have never felt more at peace with myself.

Now, you’re probably sitting there thinking one of two things:  Either “Will this guy ever shut up?” or “Great story Scott, but whatcha getting at?”

What I am getting at is that every single contact I had with the DOC, every single tweet, reply, email, hate mail, meet-up fed into my understanding that the “why” doesn’t matter.  Does God have a plan for me?  I don’t know, but what I do know is that this is what the DOC does.  That is what Social Media is capable of doing.

And we must protect it so that it may, through all of us and those that will come after, continue to help people.   As time goes on, the technology will continue to improve and, as it does, people will use these tools to best support what they, as individuals, need.

As I was watching some of the tweets from recent conferences, there was chatter about moving from Health 2.0 into a Health 3.0 era.  What does that mean?  Will some people get “stuck” at the 2.0 stage?  Does everyone actually need whatever 3.0 has to offer?

It is about you, not some company, health 2.0 or 3.0 or whatever moniker that someone tosses out there.

You make this work.

And for that, I thank you.

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An Understanding – Part III

** As part of National Diabetes Awareness Month, I am re-posting a blog I originally wrote on April 20, 2010

As I wrote An Understanding – Part I and Part II, something kept bugging me. I felt like I was missing something, something so important but so seemingly  trivial that I don’t even think of it anymore. I’d covered the daily thoughts, actions, questions and worries.

Isolation.
.

I think I very briefly mentioned in Part II that diabetes can be a very solitary disease.   There are a number of reasons why this is.

  • There are no “visible” signs that you have a chronic condition
  • There is a social stigma attached to being diabetic
  • Even if someone wants to, no one can really understand the long-term mental wear and tear that is inflicted on us every day (See Parts I & II, yes shameless plug)
  • Finding support can be difficult because the social pressures make people uncomfortable “coming out”
  • Self-image, it is so easy to see yourself as broken somehow
  • Depression.  Diabetes can be a “perfect storm” for depression.  Long-term stress, social stigma, no end to the condition in sight, no one to talk to.  Hell, that would give me depression.  Oh wait, it already did.
  • Medico’s not seeing the results they expect and branding you non-compliant.  You do your best and you’re still a failure.
  • Once you are an adult with diabetes, you’re pretty much on your own.  Just deal with it
  • Not wanting to tell people you are diabetic because you SO do not want to hear about thier second cousin, twice removed on their dad’s side, who died of the sugar diabetes in 1947
  • Feeling guilty about eating
  • Feeling guilty about not being perfect
  • Inevitability of not being perfect

Seriously, the list goes on and on and on.   So we go along inside our defensive shell, carefully choosing who we tell what and always listening for what comments happen behind the scene when we’re not there.

The people who are reading this right now are the ones who have already taken the step to not be isolated any longer.  Even if they are just reading about other diabetics are living day to day, it is an immense help.  Taking that step to post and acknowledge thier diabetes is not easy to do.  You become used to being isolated and opening up, even just a little, allows people to see inside your shell.  You wonder how they will react.

With compassion?  Sympathy?  Blame?  Pity?  Ridicule?  Who knows.  But do you really care?  Seriously, is the opinion of someone else about your condition in anyway more valid or important than your own?  I hope you answered “Hell no!”

How do I react to my condition?  My wins?  My failures?  Am I honest with myself about how it affects me?  How do I perceive it?  How does that affect my outlook on the totality of my life?  Do I give myself a pat on the back when I earned one and a swift kick in the butt when I’ve earned one of those?

There is a saying that perception is reality.  How you perceive a problem will define how you attempt to solve it.    If you perceive yourself as being isolated, how can you know that you are not?

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An Understanding – Part II

** As part of National Diabetes Awareness Month, I am re-posting a blog I originally wrote on April 12, 2010

Last time I wrote An Understanding – Part I.  That was a walk-thru for a pretty average day for me…  Hmmm, let’s see… February 1970 to today is just about 14,700 days just like that one.  In a row.  No breaks, vacations or hiatus’s (hiatusi?)  in there anywhere.

Granted, I didn’t worry as much about it when I was a youngin’, but it was still on my mind.  Some days were better than others, some worse.  What complications would I get?  When would I get them? Would I have a life past high school?

I wrote about the answers I need on a daily basis last time, but how do I get those answers?.  Glucose testing 8 or more times a day, everyday.  Watching my carb intake on every single bite I take, every day.  Tracking my insulin doses, every day.  Keeping track of all that info, every day.  Watching, waiting for the signs of some inevitable complication, every day.

Knowing that tomorrow will be the same, and the day after, and the day after.

Think about that while we consider that 14,700 day number from the other end.  From February 1970 to god knows when.  Forever. When will it end?  In honesty, it will only end when I do.

How can I do that day-in day-out forever?  Why should I even bother?  What type of life will I have at the end of this road?  Will I have kids?  Will my kidneys keep working?  Will I get to see them grow up? Will I go blind? See my grandkids?  Am I going to loose my feet?  The stories of others who have eventually succumbed, will I be one of those stories some day?

While I’m doing all that crap that I do every single day, those thoughts are always in the back of my mind, pressuring me to quit, challenging my resolve.  Always gnawing away at my hope, my strength, draining me.

Forever. When will it end? It will only end when I do.

I try to protect my children as much as possible from those thoughts.  That’s just not really possible, of course, with the media and all of society’s stereo-types that are out there.  How much will they worry?  What will they worry about?  Will it effect them in years to come?  Will they become diabetic?  Will they have to walk the path I’ve walked?  Will they do better than I?  Will they give thier kids a better life than I was able to give them?

Forever. When will it end? It will only end when I do.

Tomorrow is another day, another 8 finger sticks, 100 carbs counted, more results recorded, a thousand scenarios getting played in my head about the day and the future.

Forever. When will it end? It will only end when I do.

Sounds grim doesn’t it?  A life of constant stress and worry.  Why do I bother you ask?  Because I want to watch my kids grow and have kids of thier own.  Becase I believe I can make my little corner of Kansas a better place. Because I am not defined by a physical condition.  I am defined by the actions I take as I go thru life with my family, friends.  Because I am just too stubborn or too stupid to quit.

Forever. When will it end? It will only end when I do.

Forever, yes.  But I end it now.  I will do the best I can today, everyday.  The future is going to have to take care of itself from now on.  I’ll have the best future I can have if I can do the best I can today.  Not yesterday, not tomorrow.

Forever today, until I end.

But when will…

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An Understanding – Part I

** As part of National Diabetes Awareness Month, I am re-posting a blog I originally wrote on April 6, 2010

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 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 CWD’s (children 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 CWD 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.

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