Mouths wide open, by smerikal on Flickr, licensed under Creative Commons

How do they keep screwing up and how do I cope? That’s what I’d like to know.

This morning started early, as mornings tend to do for me when I’m on steroids. 4 a.m., the hour of 30 year olds. (Except I’m pushing 44.) A couple of looooooong Decadron-fueled emails later, it was 7 a.m. The day dawned suddenly, because I had been hiding under my blanket with my phone so as not to wake J. When I peeled back the covers, presto!

My objective for the morning was to see the retina specialist, Dr. T. I’d seen him at the beginning of October, when things were a lot worse with my vision. I had lots of floaters, random flashes, the works. In fact, my left eye had shown some swelling in the retina, so I’ve been on a regimen of a couple different eye drops all this time. I never thought I’d get good at eye drop placement. Turns out you know you’ve gotten good at it when they make your eyes sting first thing. So for six weeks – actually longer – I’ve been faithfully heeding the rattlesnake-like pill-bottle-shaking sound alert of my meds app (which I have mastered and highly recommend to anyone who may need such a thing, may you never) and putting drops in my eyes seven times a day.

Last Friday, Dr. D (the ophthalmologist) said things were looking okay, but I think he was so freaked out by the fact I was seeing him two days after brain surgery (and that I was so sanguine about that) may have distracted him a bit. He and Dr. T work at a clinic together on Friday afternoons, though, so they were able to have a word about me.

Turns out my retina today looked GREAT. No swelling at all. Of course, in addition to the steroid eye drops, I’m also taking oral steroids, so that may be skewing things. I’m seeing Dr. T again in three weeks.

Something strange he noticed today, though, which he hadn’t the last time, is that my optic nerves seem to be swollen. He was concerned about this, so I had him call Nurse Practitioner A who works with my neurosurgeon, Dr. K. He amazingly got her on the phone and even though he wasn’t able to reach Dr. K right then, it felt so good to know my practitioners talk to each other and give out each others cell phone numbers and genuinely want to figure out what is going on with me. My hunch, which is not yet confirmed, is that the swelling of the optic nerves is a side effect of the gamma knife surgery. I’m hoping that is all it is.

I’m hoping there is nothing more to it, because my dance card is full this week. No more time to schedule extra doctor’s appointments. Tomorrow I’m seeing my therapist, M. Wednesday I see Dr. P. And it’s a short week. And THANKSGIVING – which I remember so fondly from last year as The Day I Could Eat Again.

I’m also hoping nothing further is wrong because when I went to pick up refills of my eye drops, the ones I’ve been using for weeks and need to continue using (albeit in smaller doses), the pharmacy once again was charging me a very high price for two tiny bottles of eye drops. The last time this happened, I spent two hours on the phone with our health insurance, and once hung up sobbing.

So I came back home and got on the phone. Except this time I’m on Decadron. No tears. I was borderline belligerent. The guy on the phone was baffled. And “senior resolution specialist Larry” has not called me back yet. Which means I don’t have my meds. Should I have overpaid $30 for my precious eye drops? If it were merely a question of time versus money (which it so often is, especially in NYC), perhaps I might have been okay with that, and I would have gotten my drops and put them in and had a longer nap. BUT THIS IS NOT THE ISSUE. This is some internal issue with my insurance, the last time around they apparently did a manual override of it, and I guess they expect I will be fine with manual overrides for time immemorial. They are incorrect about that.

I think it’s time to take a step back and realize I’ve actually been out of one of the drops since last Friday, and haven’t gone blind yet. And I still have the other kind. I have 30 minutes before I need to get the kids (and head into dinner prep, HOPEFULLY no homework this short week) and prepare for a solo evening with them so J can play basketball. So I’m not going to call the toll free number to be put on hold for another 30 minutes while they locate Larry, the senior resolution specialist, who has probably been hiding out in the john all afternoon waiting for the day to end, because he suffers from extreme job dissatisfaction, has nightmares about manual overrides in which he actually has to do manual labor to get them to work, and then his wife complains because he can’t seem to peel himself off the armchair after dinner to help out with the baby.

This is not to say I am cultivating even a shred of empathy for Larry in his official function, because… see dogs up there?

SERENITY NOW. (Or a restraining order later.)

PS I like to think I’m kind of funny on Decadron.

4 thoughts on “Scream

  1. Hi, Deborah! I’m Kate Boon’s mom, and I’ve been reading your blog for a while now. You are an amazing woman, and love the way you write! (I was an English major in college, so high praise, that!)
    My husband, Kate’s dad, has been disabled since 2004. For years I actually scheduled 2 hours per week to get on the phone with our health insurance over his issues. Depending on your insurance, you might be able to get your “own” representative. This can be really helpful, as at least you don’t have to explain yourself repeatedly as you work up the food chain from Representative to Supervisor to Rapid (HA!) Resolution Specialist! If not, just be grateful for steroids and patience!

    Liked by 1 person

    1. Beth – thank you so much for reading along. And thanks for being Kate’s mom! She’s such an inspiration to me.

      I really appreciate your advice re the insurance. And your tenacity is awe-inspiring (I see where Kate gets that from!). For now I’m just in the junior leagues of this, dealing with fishy prescription pricing practices. Our insurance has on the whole been great about coverage – which is why I have time to sweat the small stuff, and probably should not rock the boat too much. But I won’t pay twice what I paid for the same bottle of eye drops in October without a fight! Even if it means I have to wait for a call back from Larry…

      Best wishes to you for a very happy Thanksgiving!


  2. Pingback: I WIN | I'll Live

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