Tuesday, December 30, 2008

not myself

“This is not me,” I tell my husband. I have been crying, loudly, with choking and spasms and caught breath, for an hour, since he came home to tell me that no one called in my pain prescription refill.

These days it’s hard for me to solve problems without first sucking lots of air through my teeth, turning red, and shaking. Yesterday, I got a lab work bill for $300—something that should have been taken care of by my insurance. But a computer glitch defaulted to some ancient policy, despite my having given the tech my card and license and waiting for him to make a copy. So I went through a few histrionics before calling the billing department. The problem was solved easily, painlessly, and immediately.

This inability to deal without a prodrome of drama began the other day, after I had my staples removed. Thanks to the marriage of technology and networking sites, I was able to gross out a few of my closest Facebook friends with Serena’s home video of the procedure. But I haven’t been the same since. Maybe it was the subsequent car ride that wrecked me. Or perhaps I twisted excessively while trying to put on my underwear. Never take for granted the putting on of underpants; you never know when you will need to enlist your mother, husband, or daughter to help you pull them up.

The beautiful progress I was making, back when I was annoyed by a bit of leg pain and a lot of nerve damage in my left foot, has now given way to excruciating stiffness. I’d stopped taking pain pills during the day, going ten hour stretches with not so much as an Ibuprofen. By the end of the first week, I could pick up my guitar and sit in a straight chair for twenty minutes to strum it. I could pour a glass of water, and stand up from sitting on the toilet without holding onto my legs.

Now I can’t lean slightly to raise a glass of water from a table. My back is arched excessively backward. Today I missed my first walk around the block in a week because I just couldn’t make it. And I’m back to taking one step at a time, both up and down the stairs, which I haven’t done since day two.

Instead of weaning off the meds, I take my maximum allowable dose. Anyone who knows me knows that this is not me.

Yesterday morning, I called my surgeon’s office to ask about a refill. I was nearly out of pills and had begun rationing them, bargaining with myself about how to manage the pain. I know that it often takes two days for the office to call in a prescription, so I sent Marty today. He returned at 4:45 without pills, telling me that no one had called it in.

The teeth sucking and shakes began while I tried to figure out what to do. I sent Marty for the phone and my pill bottle so that I could call the doctor’s office. They were closed, so I pressed zero to reach the on-call physician. A woman answered. I calmly explained that I'd had surgery and had called in a prescription, but no one refilled it, and now I'm out. She replied that if my medicine had been so important, I should have called earlier in the day. She could not write me a prescription, and what did I want her to do about it? "I want you to call the physician on call," I told her, and she said, “Yes, ma’am!” as if I were the one with the attitude. A man came on. I told him I'm in pain and out of meds, and he said that pills are not an after-hours emergency. He has strict orders to ignore patient requests for refills. If doctors can’t manage their time well enough to approve prescriptions at the end of each day (or keep patients from having to wait two hours in a waiting room), they don't want to be reminded about it at 4:45, when their office hours have ended. I can hear the conversation when he hung up from me: fuck that crazy crying bitch on the line who’s insisting that the doctor is actually supposed to work for her.

My home care nurse was furious on my behalf and tried to charm the answering service, but he had no more clout or luck than I.

So between pain and fits of ferocious spasms of tears and breaths, I tell my husband that this is so savage, so undignified: for patients to go through what doctors insist is “major surgery," which requires we suck up our disdain for mind-altering meds and ease our pain, because pain is dangerous to our mental health; and those same patients to be treated like criminals by the doctor's answering machine, the pharmacist, and the insurance company.

My hydrocodone prescription calls for 1 to 2 tablets every four to six hours. My doctor allows only sixty pills per refill. But the pharmacist, without any knowledge of the patient or her condition, determines how long that prescription should last. My first prescription, three weeks prior to surgery, contained sixty pills and instructions that would have the pills gone in seventeen days. After surgery, when Marty took my new prescription to the pharmacy, they refused to fill it for an extra week, because that's when the pharmacist determined I should be finished with the first bottle.

That's right. A pharmacist can refuse to refill a bottle of pills that, had I taken even the minimum amount in the maximum time, would have been depleted half the time, even when my condition has changed, and I am now a post-op patient. When we finally got our refill, the pharmacist decided it should take me ten days to use them, even though the instructions allow me to finish them in five, if that's what I need.

Marty says they just don’t give a fuck because it’s not their job to care. There are a million other patients out there with the same story, so they are simply indifferent. And he’s right—frankly, my dear, I don’t want them to give a damn. But that means I can take 12 pills a day, without being subjected to their judgment. As long as I'm not taking more than the doctor allows, it’s none of their business whether I’m swallowing them or stockpiling them for a night of partying when I’ve recovered, a year from now.

“I am not me anymore,” I tell Marty, sniveling, while he massages my head. I have to go to the bathroom, and I reject his offer of help, maybe stubbornly. But when I get to the top of the stairs, I see the most amazing sunset in months. I call, but he's gone downstairs, and I can’t wait. I take those one-at-a-time steps quickly back down, sling my camera over my shoulder, and pull myself back up, crying with every painful yank, until I am in the attic, and the window is open, and I’m shooting up. It's no hydrocodone, but capturing that beauty helps in other ways.



So maybe I am me. A little.

28 caws:

patrick said... Best Blogger Tips

Jaysus!

It's fucking madness!

deb said... Best Blogger Tips

Beauty piercing the pain. At least... it's a little something.

May you heal quickly and properly!

Cybergabi said... Best Blogger Tips

I just hate the medical system. More and more.

Photography is good therapy. Maybe better than the rest. Hang in there, kiddo.

Kim Hosey said... Best Blogger Tips

You're you. Others would have been reduced to way worse by this.

It just sucks in so many ways that people in these professions, even if they have a million other things/people to worry about, would be so uncaring and indifferent and just, just ... shitty. Maybe you should start stockpiling, when you finally get refills.

And beautiful sunset shot, as always. I love that deep red.

jodi said... Best Blogger Tips

oh, leslie, i am so sorry! what a nightmare.

but your writing is amazing as always. and your sunsets continue to inspire.

xoxo

Sarah said... Best Blogger Tips

Oh fucking hell...I hate that you are going through this. That anyone has to go through this. The medical system is so screwed up in so many ways...and how on earth did pharmacists get so much power?

You will get better...this is a normal up and down after surgery. Be patient with yourself and let people help you and breathe...breathe...breathe.

You are strong enough to handle all of this. That I know.

Lovely lovely photo...worth those extra steps.

Tracy said... Best Blogger Tips

those assholes suck.
sending painless thoughts your way.
xo

jennifer said... Best Blogger Tips

fucking idiots. they're given so much power by the system, and they -- like the night nurse -- abuse it so easily.

i'm so sorry, sweetness.

don't give yourself a hard time for the tears. this journey is so fucking hard, emotionally and physically. the crying is just your psyche wringing out the washcloth so you don't drown.

xoxo

suttonhoo said... Best Blogger Tips

oh Leslie.

OUCHOUCHOUCHOUCHOUCHOUCHOUCHOUCH.

pain is such a bitch. and it's so friggin' lonely. you can write about it, we can wince in sympathy, but we'll never know what it really feels like inside your skin. your pain is yours and yours alone.

plus it's compounded by the fear that maybe it will be this way forever and ever and ever.

but it won't. I pray I pray that it won't. and that your courage and your compassion and your eye and ear for all that is beautiful and healing and good will pull you through this shit storm.

and, for what it's worth, I'm pulling for you too.

Leslie F. Miller said... Best Blogger Tips

Dayna, you hit it exactly. EXACTLY. I feel like it's forever. I am frustrated and feel hopeless. And very, very, very lonely. Thanks for understanding.

Thank you, everyone.

Anonymous said... Best Blogger Tips

Wow, Leslie....I'm so sorry you're going through such a terrible time. When my Mom died the night nurse refused her her morphine (after a huge and terrible operation) until 4 hrs had passed, despite the dr saying she could have as much as she needed.The last 2 hrs of every 4 hr period was dreadful. I've seen nurses be cold and haughty so often. How sad.
I hope and pray this won't happen again; that you will always have the meds you need, and that you will heal quickly.
Unbelievable that you hauled yourself down and upstairs to take these photos....they're so expressive of your trials. And, as usual, your writing is wonderful.
Take care, be well soon.
hugs, Janis (Calamityjan)

PJ aka mybluemuse said... Best Blogger Tips

I'm on Hydrocorone for my RA pain so I know what you're going through. Heck, I'm on so many meds it's not even funny! And my pharmacist thinks I'm an addict! Whatever! Just give me my meds and stop judging me. Anyway, I'd overnight you some of mine if I could. It's drastic but if the pain gets too bad go to the ER. I hope your back is okay and that you make it through this. I'm so sorry, Leslie.

Hugs!

leedav said... Best Blogger Tips

Oh shit, Leslie! I knew recovery would suck but I didn't know it would be THAT bad. I wish there was something more I could do besides sending you you good vibes.

Keri said... Best Blogger Tips

That shit is so WRONG.

I'm so very sorry for what you are having to go through. *making a note to call tomorrow to refill prescription*

Is it just me or have the prescription runarounds gotten a whole lot harder in the past year?

~minta~ said... Best Blogger Tips

fuckers....fuckity fuck fuckers!~
is there a chance to go to another pharmacy?...perhaps someone who possesses a heart would work there?
& what's up w/ your doctor?....hopefully tmrw u will be able to get him on the horn? i am so sorry.....((on a good note?...u look a lot prettier than i when i cry =) ((hugs))

Esther said... Best Blogger Tips

taking some of your anger so you don't have to carry it, and adding it to mine. i'm so sorry that you are dealing with such bullshit. you may not feel it, but you have an amazing strength. it may sound corny, but i'll pray that you get through this sooner than later, with 100% healing. xo, sweetie.

jo(e) said... Best Blogger Tips

If it were me, I'd be screaming and swearing at everyone. Pain sucks.

I hope you heal fast!

Don said... Best Blogger Tips

The shits! Not a damn thing I can think of to help you. I am here for you, I can listen, I can pray. Hold dear those passions that drive you. Photos, writing, family. You will get through this Leslie, you will.

Dallis Ann said... Best Blogger Tips

I can't believe you're going through this. I wish I could help. Your words are hard to read, but so compelling. I want you to be without pain.

Is that too much to ask?

Richard said... Best Blogger Tips

Gawd! Well, you made lemonade out of it, Leslie. But still. Sorry . . . I feel your pain. As one carrying back surgery scars: it does get better. Slowly. I still get acupuncture once in a while and it helps me. Yoga has been great. I know, hard to imagine that now. And I stockpile just in case and always will.

Gail Dragon said... Best Blogger Tips

I am so sorry you had to go through that.

It took me 3 trips to the emergency room and 2 trips to the pediatrician's office to have my son finally hospitalized with Kawasaki's Disease. I had one pediatrician call me a hysterical mother and yell at me. Finally the last trip to the ER, his doctor was on call and admitted him by just looking at his pitiful red and swollen little face. My poor little guy was only 4 years old.

Some of those in the medical profession are desensitized to pain and suffering, fortunately they are the minority.

Go commando, until you heal ;). Best not risk that injury again.

Bob and Debi said... Best Blogger Tips

what you wrote reduced me to tears.
so sorry you have to go through all that crap leslie. argh!

ODG said... Best Blogger Tips

...sorry for the bureaucracy and associated bullshit Leslie... ...especially the bullshit, since you get caught up in the sadness and subsequent abuses of others (see http://en.wikipedia.org/wiki/Hydrocodone for some details)... continue to do your best and know that we are all pulling for you...

marie said... Best Blogger Tips

that sucks. i sure hope it gets better in '09. happy new year to you and yours.

Fotofigg said... Best Blogger Tips

What a horrific story, Leslie! I can't believe that pharmacists have that kind of power where you are. They would never try pulling anything like that up here. Un freaking believable. And the attitude of the on call answering person and doctor was appalling.

Here's hoping you get your meds soon and everything calms down for you.

joker the lurcher said... Best Blogger Tips

i just found you again after your comment on flickr! it sounds like you have been having a bad time of it. very gentle hugs { { { } } }

Mary said... Best Blogger Tips

Of course you are still you. Only you would do that! I'm very sorry you're still in pain. Is there anything I could do besides leave lame "get well soon" comments on your blog?

Mister Boh said... Best Blogger Tips

Indeed it is you, dear Les, the better angel of your nature. Hang in there, sweetheart.