A Difficult Patient

I realize that this is sort-of a cooking blog, and I haven't posted any recipes lately.

That, unfortunately, is because the other half of both my life and this blog revolves around the horrible diabetes monster.

It's been a rough couple of days in D-land. Really rough. My 3 hour appointment with a certified diabetes educator (and in reference to her, I use the term very loosely) was a wake up call to the absolutely pitiful state of health care in more rural areas. Four days later, and my head is still reeling from the amount of completely outdated information I was given. And my anger at being made to feel like a "difficult" patient still seethes.

I'm angry, and I feel a little helpless. What is my next option for a good, knowledgeable, up-to-date endocrinologist or CDE? As I've mentioned before, I already drive an hour away from my home for appointments. Next on my list - heading to Ann Arbor, a three hour round trip, and HOPE for better luck there.

Through all of this nonsense, I'm beginning to understand the sub group of Type 1's out there who want to differentiate themselves from Type 2's by completely changing the name of the disease. We are honestly such a small section of the diabetes population. When I go to a CDE, I expect her to be knowledgeable in Type 1 diabetes, as well as the technologies, drugs, and diet plans used by type 1 diabetics in the treatment of their disease. I do not want to be lumped with the type 2's. Not because type 2 is better, or worse, or whatever. It is just as difficult to live with every day as type 1. I feel that although the idea of treatment in both is the same - to keep blood sugars as close to normal as possible - the methods can really differ. So I wonder, if I had "Autoimmune Pancreatic Disease", would people, including healthcare professionals, see me differently? Treat me as an individual? Help me to find a plan that works in my own situation?

(Cause let me tell you, this 60 grams of carb a meal "meal plan" isn't working. Really, lady? I'm 5'2, for crying out loud. How many calories do you think I need? Ok, rant over.)


I guess that, once again, I've garnered how essential it is to be your own advocate. Doctors, CDE's, and dietitians should always be able and open to explaining the "whys" of a diabetes program. And sorry, "That's just the way we do it here" isn't explanation enough. Neither is "But we're a nationally recognized program."

(This picture is a perfect example of type 1 and type 2 being lumped together. The fact that a diabetes center would ask me this question, implying that there is something I could do or not do to prevent my child from acquiring a frickin AUTOIMMUNE DISEASE makes me LIVID. Maybe the fact that I wanted to claw out the eyes of the CDE after reading this was what labeled me as a "difficult patient"??)

World Travels and the D

I am finally home from a monthful of travelling. And although exhausting, I loved every minute of it.

First we headed up to Boston for my hubby's hooding and graduation. Can you tell that I'm about bursting with pride?

It was honestly like coming home. We got to hang out with all of our very treasured close friends again - the kind we just haven't had the time or opportunity to make here in the Midwest yet. I miss them horribly every day. I just feel like I fit there, if that makes sense.

Thankfully, I only had one diabetes related snafu. Somehow, after 12 years of carrying crap around with me everywhere, I walked out of the hotel room for an entire day out on the town and forgot my glucometer. Seriously? How do I do stuff like that? I spent the day relying entirely on the Dexcom - which, I suppose, is better than flying completely blind. Except that when I met some friends for dinner at a nice restaurant (read: hard to bolus for on a good day), right after the appetizers, the dexcom started wailing. HIGH! HIGH!! HIGH!! It kept climbing and climbing and climbing. Up into the 400 range - crazy, because I very, very rarely hit those numbers. So, in my panicked, what-the-heck-is-going-on state, I committed the ultimate no-no..... I corrected for it on my pump. Without a meter reading.

Several hours later, back at the hotel at last, a fingerstick revealed a nice little 132...... while the dex blinked at 350. Oops. Needless to say, I swallowed down a whole pack of skittles pretty damn fast.

We finished our travels with both of our families at Corolla Beach, North Carolina for a week. It was both a relaxing and a busy week, chock full of hiking and 20 mile bike rides and hang gliding and boogie boarding in the ocean. (On a random side note, did you know that companies won't let you hang glide if you are diabetic? I call shenanigans. That's simply ridiculous. And yes, I lied, signed the paper, and hid my pump in my shirt. Then I went hang gliding and had a fabulous time.) We were renting a beach house complete with a pool and a hot tub. Now I know that you can never truly have a "diabetes free" week. I know that it's with you every.single.day. But I chose to give myself as much of a D-vacation as safely possible. (Who am I kidding? I really just wanted to revel in the hot tub, and that of course meant that I had to pull the dexcom sensor.)

Honestly, I don't know if I achieved what I was going for. Sure, I didn't have to worry about one more contraption stuck to my body. And I let myself eat an absurd amount of junk. But I think I actually caused myself MORE anxiety than normal. I realized how attached I am to the dexcom. It's reassuring to know what your blood sugar is running at any given time (oddly, even after the mishap the week before, I still trust the thing.). I was extremely active during the week, and my blood sugar drops like a rock during exercise. I found myself in the ocean thinking, "I wonder what I am now?" And during a long bike ride. And while playing laser tag. And even at night before I went to bed, staring at a 130 on the meter, (a number that should have been calming pre-sleep), I was thinking, "But where am I headed? Am I sky rocketing? Am I starting to crash?" It just goes to show you what that little bit of reassurance does for your metal health every day. And that mental health plays such a big role in this disease.

Tonight I'm preparing for another huge three hour doctor's appointment tomorrow. Nutritionist, diabetes educator - the works. Which means I've spent the night writing down numbers and downloading the dexcom information - which I can only pray that they actually look at this time. Sometimes the sheer amount of time this disease takes up in my life is mind boggling.

(Some of the wild horses that roam Corolla Beach. They were absolutely breathtaking.)