Thursday, September 29, 2011

Invisible Illness Week

This is weeks late, but Jess did this and is actually what inspired me to set up this blog. And even if its late I still wanted to do it.
The illness I live with is:
Type 1 Diabetes
I was diagnosed with it in the year:
But I had symptoms since:
several months before
The biggest adjustment I’ve had to make is:
Not trusting my feelings. I can feel fine but know something is off, or something can be off and I just don't believe it. There's a lot of second guessing.
Most people assume:
I did this to myself by eating sugar.
The hardest part about mornings are:
Lows. I'm so unbelievably groggy in the morning and with low blood sugar I'm stumped by getting up. Highs aren't fun either, but they lead to a bad mood, or maybe even feeling miserable, but not overall general dysfunction.
My favorite medical TV show is:
House, though I don't watch it tons anymore.
A gadget I couldn’t live without is:
If I had to pick, I'd say the pump. Might be reckless but I'd rather guess at corrections than know the number and be unable to do anything about it. (And sure, there are syringes, but this is hypothetical!)
The hardest part about nights are:
Being tired but not willing to go to sleep because sugar is off in either direction. I sleep bad when it's not right. I can sleep (and appear to be unusual in that sense) but sleep and rest are not inherently linked.
Each day I take a few pills & a couple vitamins:
Insulin. Don't take pills very reliably.
Regarding alternative treatments:
Exercise helps but I'm not willing to do a zero-carb diet & maintain the physical exertion necessary to have a chance at it.
If I had to choose between an invisible illness or visible I would choose:
Invisible. I vent sometimes, but its not because I want sympathy. And I choose to vent. With a visible illness, that's not a choice to the same degree.
Regarding working and career:
I work in an office and it's never been a big conflict.
People would be surprised to know:
Diabetes sucks because it requires constant maintenance. But at the end of the day, it's not as limiting as it may appear.
The hardest thing to accept about my new reality has been:
Initially, it was the crappy selection of diet soft drinks.
Something I never thought I could do with my illness that I did was:
Grew to adore Diet Coke.
The commercials about my illness:
I haven't seen many commericals about it but the magazine covers sometimes grate at me.
Something I really miss doing since I was diagnosed is:
Being reckless. Running off to something without wondering if I can run off to do it.
It was really hard to have to give up:
High blood sugar. It must have taken months after being diagnosed to not feel terrible at "normal" levels.
A new hobby I have taken up since my diagnosis is:
If I could have one day of feeling normal again I would:
Pie. Lots and lots of pie.
My illness has taught me:
To deal with life. Things don't always go your way. Tough. It's not your fault. It's not anyone else's. But you get to clean up the mess.
Want to know a secret? One thing people say that gets under my skin is:
"How's your sugar?" If it's gonna be a problem I'd volunteer it. Note, this is different than subtly implying I need to check my sugar.
But I love it when people:
Treat me as a person without diabetes.
My favorite motto, scripture, quote that gets me through tough times is:
Can't say I have one.
When someone is diagnosed I’d like to tell them:
Don't worry about all the responsibility people are warning you about. Take as good care of yourself as you can. No reason to fret about things you haven't even encountered yet. And get a pump. Now. I'll wait.
Something that has surprised me about living with an illness is:
Learning more about nutrition.
The nicest thing someone did for me when I wasn’t feeling well was:
My wife comforting me, when things just don't go right. It's calming.
I’m involved with Invisible Illness Week because:
I saw Jess's post and though, that'd be fun.

Continuous Monitor

Today, my endocrinologist set me up on a loaner Dexcom 7.

I've had a CGMS before; a Medtronic that linked to my pump. That was 2 years ago. Suffered a number of problems with it: it wasn't accurate, it hurt terrible going in, and the adhesive on it would quickly expire. I tried it several times over a two year span but eventually frustration got the better of it.

So as of now, the D7 has been jacked in for about 9 hours, and feeding data for a couple fewer.

To start with, insertion pain was much reduced. It's still nothing that I'd say feels good, but it's less painful than my pump and far better than the previous CGMS. As accuracy goes, it's better but still not great. Right around 100-120, it's pretty accurate, but highs and lows seem to be greatly exaggerated. A 140 this afternoon showed as 180. An 80 before dinner was flashing a low that bounced around the low 50s. But so far I haven't seen it report a high as a low, or been wildly off base. Too soon to call adhesive good, but it's better.

One thing I didn't expect, and admittedly is easily resolvable, is that the belt loops on my pants are quickly being used up. Pump takes one, D7 takes one, and in some cases, my regular meter takes one. Think I'd be more willing to stick the D7 in my pocket if it weren't a loaner.

For the last half hour, D7 says I'm in the low 70s. I had a moderate-high carb dinner of a meatball sandwich and a cup of fruit. According to the CGM, I never broke 150. Meter say 85: 77 vs 85, pretty good!