Miss Special Eats Bon-Bons

(I know, I know. The title of this post sounds like a headline about a final rift between two spoiled cats.)

When I’m not in the hospital (which hasn’t happened for a year now) or in obvious agony (which hasn’t happened for 3 months now), people often ask me, “So what do you do all day since you’re not working?” I’m going to ignore the people who ask with an undercurrent of, “So what do you do, lay around and eat bon-bons all day?” and do my best to answer those who honestly wonder.

Basically, you can divide up my activities into 3 categories : 1) Activities of Daily Living (ADL’s is the technical term), 2) Doctor visits/ procedures, and 3) Pulling out (what remains of) my hair.

Let’t talk ADL’s. This is stuff like buying groceries, paying bills, personal care. (Please do not be alarmed. I am not going to tell you about my potty breaks.) What healthy people don’t know is that chronic illness takes so much energy that everything becomes complicated. Showering means deciding ahead of time if I can stand long enough, if I can take the hot water without it completely overheating me, if I will have the strength to actually wash myself, if I will have any strength left at the end for anything else, or if that one ADL will land me in bed for hours. Or the whole day. It’s crazy.

A woman with lupus wrote a wonderful essay about this called "The Spoon Theory," which you are required to read. There will be a pop quiz in a future post.

(My Buddhist friends are wondering, “Um, Ani Sangye? I don’t see your daily practice on your list. What’s up with that?” For the purpose of this discussion, I’d categorize it as an ADL.)

Yesterday’s post gave some insight into the time-consuming world of doctor visits and procedures.

I spend what remains of my life pulling out the bits of hair left on my head. Think I’m overreacting? Let me take you through just one of the many current issues and let’s see how you score at the end :

I have private health insurance, which I had long before I got sick. It’s excellent insurance. Even though it’s pricey, it’s nothing compared to my medical expenses. Now with a diagnosis like Wegener’s, no one is ever going to insure me again if I lose this policy, right? Giving up my private insurance is out of the question. However, after two years on Disability the feds assume I’m permanently disabled, so they recently enrolled me in Medicare. I plan on working again at some point. Once I return to work and am able to support myself, I’ll lose Medicare.

Now, when you don’t work for 2.5 years, you get a little, well, poor. So the state kicks in and pays my Medicare premium and co-pays with a program called QMB. If I didn’t have private health insurance, it would also pay the 20% that Medicare doesn’t cover. In fact, no one can really answer how the QMB interacts with Medicare and private insurance. The big problem is right around the corner. My private insurance has a huge annual deductible. Medicare doesn’t cover that. And nobody—despite making calls that burned through (I’m not kidding) 300 cell phone minutes in 3 weeks—can tell me if the QMB program will help. Doctors offices are stumped. One doctor’s insurance person told me today, “You’re unheard of.” I have a hard time believing that, but okay. I'm so special.

So, who’s got a Magic 8 Ball? What’s gonna happen in January when I become a billing Hot Potato?

This concludes the test.

Scoring :
“Pass” if you wanted to run away or cry for Mommy halfway through.
“Fail” if you think it’s no big deal, easy fix. (Unless you DO know how to fix it, then “Pass.”)

I feel faint. Quick—someone bring me a bon-bon.