(How do you like my new social media gambit? [Get more visitors to the blog by titling the posts after popular songs which I have never heard.])
I’ve been on a wee break. Blogging seems like the easiest thing to do, sometimes, and I think I’m finally ready to tackle harder things. Like losing the weight and rebuilding the muscle mass which I gained/lost during my long steroids bender. Like think about FINISHING other things I started ages ago.
I start each week with these intentions – don’t we all? And then reality encroaches – more school holidays (we’ve nearly reached the end of them, hallelujah!), more health setbacks.
Currently, my eyes are the problem spot. If I’m learning nothing else on this pharmaceutical adventure tour, it’s that you should never assume that the least common side effect of the medication can’t possibly happen to you. Somehow, I have been spared of the fevers and chills and many other side effects more common with the combination therapy I’m on. The ocular side effects don’t even make the handy chart. One of them occurred in 0.2% of patients, and the other in 2% of patients (meaning one patient in 55). Dr P has only had one prior patient experience iritis – in both eyes simultaneously, and (I guess) only once.
I find myself in the uncomfortable position of feeling like a guinea pig, even though my treatment has been approved and deemed safe. My ophthalmologist, Dr D, examined me yesterday. I am recovering well from my third bout of iritis, but then I mentioned offhand that I’ve been seeing lots of floaters and flashes of light in the other eye. For about a week if not longer. This meant – guess what? – more tests, more dilating, more waiting. In the end, he did not see a detached retina, but left a long voice mail for a colleague of his, a retina specialist, mentioning things like cells and “snowbanking.” I have an appointment with the retina specialist for Monday. Which means I get to spend the weekend worrying about what happens if my eye stops working altogether, suddenly.
Earlier this week, on one of the kids’ days off from school, we took the subway up to the Bronx Zoo. We’ve only ever driven up there, so when we got off the train, I was trying to navigate the short but confusing walk to the zoo entrance. I started us off in the right direction, then thought it was wrong, then corrected course again. My glasses helped read road signs, but were no help at all with the map on my phone. My frustration level was rising.
We wound up on a dusty median where two busy parkways interconnected, and I saw a sign for the zoo but wasn’t sure if it was a pedestrian route. I had noticed out of the corner of my blurry eye a man sitting a distance away, and was dismayed to see him approach us offering guidance. We were in unknown territory and I hated the kids to see me not knowing where to go and having to talk to people who hung around on dusty medians. The man very kindly pointed us the right way, but I was so overwhelmed, I kind of snapped at him. As we walked to the zoo, I broke down silently sobbing. I hadn’t needed to be so mean. Crying made it even harder to see. Young J noticed I was crying and asked why. Poor kid, I unleashed every single bullet point of why I was crying. And very little of the list had to do with our actual situation. I did notice him trying to make things better – which is one of J’s most amazing qualities – and I was moved to see it developing in my kid.
We had a grand time at the zoo, but we stayed too late and wound up heading home on the train at rush hour. There were over 30 stops between us and home, and we didn’t get seats for the first seven or eight of them. By the time we reached Brooklyn, the kids were fed up and restless and making me crazy. I came home and once again, J was there to make things better. I collapsed until dinnertime.
I lose perspective very easily. For example, it took me a couple of days to stop thinking of the zoo outing as anything more than an ordeal. I’m sure the kids remember it much more fondly.
I obviously need to work on this, especially given the uncertainty underlying everything I do these days – I don’t have any guarantees I’ll be able to repeat any experience I have. My shrink talks about that a lot. She says that eventually I will come out the other side of this and be able to accept that my life may or may not be as long as I’d hoped, and that there’s a chance I should rethink the things I’ve kept putting off until later, until the kids are older, until until until… I guess I just have to trust her.
On the other hand, my illness, and more specifically the side effects brought on by the cure, have given me insights into maladies I hadn’t been familiar with previously. Last fall, I got a small preview of what it must be like to have chronic digestive issues. Now, I imagine I have a better understanding of visual impairments and how exhausting it is to navigate the world without being able to count on perfect sight.
It’s the end of the week. I am making chili for dinner, which, at least temporarily, will make me a very popular person. The house is looking less like a hurricane hit it than last week – which is funny, because an actual hurricane is apparently headed to our general vicinity. It will be a good weekend to hole up at home, out of the rain and sudden chill, and remind myself over and over that I have just this one life (of indeterminate length), and it would be a shame to spend so much of it being pissed off.