The juggling act comes crashing down

Last week was not a good week for me. I made a HUGE mistake at work. It was the kind of mistake that was so stupid I can’t even explain how I did it. Well, I can, but the explanation isn’t good enough.

I’m on so much medication trying to keep my allergies – the headaches, runny nose, sore throat, watery eyes, hives and breathing problems – in check that I feel like a walking zombie. Even on the days when I’m feeling very good, I’m finding my concentration isn’t its normal self. The result, I’m finding that I’m making little stupid mistakes at work. Not catching this thing, or forgetting to do that thing – until this last week when I made a huge mistake.

All weekend I’ve had bad diarrhea and joint pain – is it HPS related, or is it just nerves knowing I’m walking into the office tomorrow morning and probably going to get reamed up one side and down the other?

I can’t yet blog about the bigger picture at work, but let’s just say it’s bad enough to mess up badly; it’s worse given the other things that are going on at work. Politically, the timing couldn’t have been worse.

It seems like there’s always some kind of drama regarding the bigger picture at work. For everyone else the worst – getting laid off – is bad. For me, it feels like a matter of life and death. I think one reason I’m doing as well as I am is because I have good insurance. I can get on top of things while they’re little problems. I pay attention – or try to pay attention – to when my body is telling me something is wrong. The anxiety from worrying about my future alone is enough to cause me to make stupid mistakes.

But I frankly don’t have the money to pay my rent and my cobra should I lose my job. I’ll lose my insurance. Because I have barely anything in savings, I might qualify for Medicaid. That’s scary too though. I’ve watched many other HPS’ers fight battles with Medicaid to get things covered, especially expensive drugs when the cheaper ones fail to do the job. Sometimes they win (depending on which state they live in) – but more often they lose.

I’m too healthy not to work. But, it seems like this year it’s been a steady stream of minor problems that needed attention and thus have impacted my work life. It’s not that any one problem is major, it’s the cumulative effect of everything over time. Eventually people lose their patience with you. There was all the kidney stuff, then the GI acting up, and the back pain, then the hives and allergies. Groan. I don’t have any political capital left for the big problems should they happen.

At the same time, there’s a part of me that feels like the axe is coming sooner or later – whether it be corporate downsizing, readjusting, or medical-related – does it really matter? I just want to get it over with. I want to move on to the next thing in my life.

Truth is, while I’m hugely appreciative of my job, I’ve been doing the exact same thing for almost a decade. I’m bored! I can do more than this. I didn’t go to journalism school to do what I’m doing now.

There’s a psychologist I listen to on our local Christian radio station. While we often part ways on politics, when comes to practical living and relating to other people, he’s really good. His name is Dr. Randy Carlson.

Lately his entire show has revolved around intentional living. He constantly goes on about how you shouldn’t just “survive” your life. That’s what I feel like I’m doing – just surviving and not really living much.

While I’m appreciative of my job, and scared to death to lose the insurance, at the same time I feel tethered down by it. Remember the spoon theory? I use most of my spoons every day doing my job, and often when I get home there just isn’t much energy left for anything else. Is this what God really wants me to be doing?

God blessed me with a lot of talents. It feels like most of them are getting rusty from lack of use.

Is that selfish? Lots of people in this world don’t get to use all their talents. There are plenty of people who do jobs they hate every day to support their families. What kind of a brat am I for wanting more?

And if, by chance, the axe should fall, what would I do?

I’d wonder around lost for a few weeks I suspect. What would the next move be? Suddenly I’d have nothing to lose because I would have already lost everything.

I’ve often dreamed about being able to work for the HPS Network full time. I know, however, that even if they could afford to pay me (which they can’t) they’d likely never be able to afford insurance. So, what would I do? Try to freelance just enough on the side to keep from starving and try to stick it out health wise the two years it takes to get on Medicare?

I’ve got several ideas for books. Living in this rare disease world has exposed me to so many stories that never see the light of day. Would I be able to stay afloat long enough to write them? That’s the sort of thing I went to journalism school to do.

Would I go back to graduate school? I’ve thought a lot about trying to get a degree in counseling. I spend a lot of time talking to HPS’ers about their lives and I feel like there’s a huge hole when it comes to the psychological needs of those with rare and chronic illnesses.

I’ve also thought about graduate school to get a sort of MBA, only for non-profit management. I’ve wondered if there would be a way to make the needs of the HPS Network a project of some sort so I could both help the Network and pursue a degree.

Or would I keep sending in applications for federal jobs so I could relocate to Washington, D.C. (something I’d love to do anyway to be closer to Ryan and NIH.) Financially, that would be the responsible thing to do.

Would I maybe suddenly have time to read a book just because I want to, or to finish a painting? (I haven’t finished a painting in almost four years.)

I doubt I’ll be put out of my misery one way or the other tomorrow. And, if it’s coming, I’m not really sure what I’m hoping for. I just have the overwhelming sense that I’m in the wrong place and that things are about to change – is that because that’s God’s plan, or because the notion of the status quo is too much to take?