» 2010 » April Strangely Diabetic

An Understanding – Part III

April 20, 2010 — Scott

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 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?

Posted in diabetes, isolation. 5 Comments »

An Understanding – Part II

April 12, 2010 — Scott

Last time I wrote An Understanding. 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…

Posted in dblog diabetes. 5 Comments »

An Understanding – Part I

April 9, 2010 — Scott

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.