Tag: prior authorization

Tales From the Infusion Clinic: Out of Context

Part 3 of Sound of Fury is in the final stages. Meanwhile, here’s this.

“So you said, ‘Sorry, but I’m not licking anyone!’”

Their giggles grew into laughter as the receptionist on the phone and the colleague to her right saw my bemused self on the other side of the plexiglas. For 3 years I’ve checked in at the Rheumatology side of this elongated desk* once a month for Infusion with J, the receptionist who just spoke that fabulous line above through her headset. For the last 2.5 years we’ve only seen each other masked. I feel familiar with her voice, eyes, hairstyles, humor.

“Right! I don’t blame you!”

J motioned that she’d be right with me and would explain everything as she said into her headset,

“I mean, sometimes tragedy just can’t be avoided.”

Then she looked at me, then at her colleague, smiled, listened, and … burst out laughing. I enjoyed seeing J in high spirits. She’s always been an honest and efficient part of my team at Rheumatology and I look forward to seeing her. There have been times I’ve approached the desk just after someone has been discourteous to J, if not also disrespectful, and I sense it’s probably for something beyond her control and she’ll wave it off with a Well, I don’t know what he thought I could do about that? or Some people just — or {sigh} and then greets me with a smile.

Sometimes we patients are justified in our anxieties and rages. (That’s no excuse for abuse!**) Sometimes receptionists can not only not be part of the solution, but also contribute to the problem. Especially for a sick person in crisis. These receptionists feel they are gatekeepers for their bosses, the docs, rather more than they are part of the team that serves the patients. A great receptionist like J knows how to balance the two interests with aplomb. In most cases. Can’t please everybody, of course.

Surreal image of hot air balloons, miniaturized, seemingly floating in a giant glass of water with a droplet flowing up against gravity.
Falling Up by DÅL|é

Change is afoot! I had high hopes for this anti-lupus drug I’ve been infusing monthly for 3 years now. I’ve had high hopes for treatments in the 4 years before that. But … We gave it time. More than we planned, should it fail to elicit the desired results. Next up, while also a biologic, is a considerable step up in immune system wrangling, designed to aggressively address all 3 of my autoimmune diseases. Sort of. Close enough for government work! as my Uncle Tom used to say.

My rheumatologist, Dr. K, and I were first thwarted by covid19. Then by organ damage/cancer scares. (Benign!)*** Then Dr. K got sick.

Soon after the start of 2022, I heard Dr. K had just gone on indefinite medical leave. Rumors and dates of her return came and went. Finally, in late July, I saw Dr. T, who joined the practice a year ago, I think. He’s “young” and exuberant and pretty excited about my rare disease and somewhat unusual autoimmune disease profile. I like the geeks, as long as they’re caring as well, which he seems to be. Good thing, as Dr. T told me he is now my rheumatologist, as Dr. K is officially not coming back.

So, it’s serious. I truly wish the best for Dr. K. I’ve missed seeing her these last several months. I so hope this decision and what follows work out in the best possible way for her!

“I learned a long time ago the wisest thing I can do is be on my own side.” Maya Angelou
From Word Porn

Dr. T also claimed he read through my chart prior to my appointment (Wow!) and that he was going to start work on getting insurance to approve the biologic no. 2, the one Dr. K and I discussed. Promising. Scary. With a very different infusion schedule.

I was already scheduled to receive my monthly infusion the following week. Good thing, too, considering my insurance took a full month to give the ok. It appears my memorable check-in with J marks my last infusion of my first biologic!

Speaking of which … J explained that the person on the line had rescued two tiny kittens. Despite rescuer’s best efforts, one kitten died. Rescuer was relaying to J info/advice received from Humane Society expert, who pointed out (more than once, apparently) that mama cats lick the anuses of their young to stimulate bowel movement and keep it all clean down there. Thus, prompting the protestation against licking anyone. And the wholehearted agreement of same sentiment by our lovely J.

I’m right there with them! Maybe a warm towelette?

I’m so grateful that I’ve had these years with Dr. K! After that last infusion I cried about not being able to take this next step with her, as planned. I’m truly thankful I can take it now with a new doctor and the same support team I’ve come to know and trust. Even though they’re not licking anyone! Not even to save a fragile life!

Spotlight on mutant cartoon duck: spiky mohawk, piercings, dog collar, metal plating wing, snake head on tail. “Likes to chew on pencils during meetings. Can walk through walls.”
One of my many very fine ducks, courtesy of ClusterDuck!!

September has become a difficult month for me, with occasions to dwell on the passing of a few loved ones. But this has been the second extraordinary August in a row! Last year’s was all about the most stressful business property sale we could have never imagined, intermixed with adopting a marvelous puppy (Roo!) with a nasty parasitic infection after a beloved dog (Duke!) died at the end of July.

Today, 25 August 2022, is the first anniversary of closing. Out of business, we are. Have been.

This month began with a week of migraines. One day I bent at the waist to get a bottle of water out of the fridge and was overcome with excruciating pain. For the next two weeks I was in varying degrees of debilitating and immobilizing pain and muscle spasms. Then I returned to my normal level of chronic pain, fatigue, etc. I can move! Cook dinner! Think! (With caveats you understand.) Halle-freaking-Berry-lu-jah!

And now the migraines are back, because —? But second biologic approved/authorized and now awaiting scheduling and then maybe wait a few months to make effectiveness known …

Meanwhile, don’t expect my team at rheumatology to lick anyone. They’re very good and professional. They have their limits. Good to maintain boundaries!

Small black and white puppy has nose mere millimeter from backside of slightly taller small adult black dog. Caption reads, “Learning to cue … Back it up, mate!”
Our little Roogele at ≈ 8-9 weeks of age. (Plus Draymond’s backside!)

*Rheumatology shares a long reception desk area with the Pain and Spine Clinic, which makes sense, or would, if they actually coordinated care, but they don’t. The receptionists make good use of their shared space, though.

**😇🐮! That rhymes! But also, prednisone can be an excuse for abuse. Another in my growing list of topics I mean to write about here sometime in the future. But when? I ain’t got no idea!

***I would not make you hunt for benign v malignant cancer determination in the footnotes! Who do you think I am? I will make you wait through much of 2021 and 2022 while I go through the whole process without telling anyone a thing about it, though. Yes, that I will do.

How to Get Through the Weekend without Pain Pills — in 21 uneasy steps

Preface: My former health insurance up and quit as of 31 December. My new insurance needs prior authorizations (PAs) with detailed histories (and possibly small animal sacrifices) before covering some of the meds I’ve been taking for years, including pain meds. (Yup, opioids. Ever controlled in a way that punishes legal users while not addressing the true source of the crisis, opioids.)

The need for a PA is only generated when one tries to fill the prescription. One can’t fill such a scrip early and is suspect if has more than a few leftover pills. But, one may get a 7-day “credit” of pills against the month’s supply, which then voids the prescription. So, when the PA goes through, one needs a new scrip for the remaining 3 weeks. And, if it takes more than 7 days for PA/approval? Well then, you is shit outta luck!*

The Steps, according to Underlying Conditions Lady:

1. Ration your remaining pain pills for maximum ineffectiveness.

2. Think hopeful and liver-affirming thoughts while swallowing extra-strength generic acetaminophen/paracetamol.

3. Try not to feel like a loser as “dat dumb drug dat was poisoned, ja?” — as your German aunt referred to Tylenol — does little more than reduce your lupus fever and aches a little.

4. Distract yourself with NBA basketball, podcasts, and passing thoughts of fire bombing FDA headquarters.

5. Play with the dog until everything hurts too much.

6. Go ahead and have an edible. Medical marijuana is legal in New Mexico and you have consumables. Lemon-lime-flavored, weedy gummies* and dark chocolate with a ganja aftertaste. Yum, right?

7. Try to enjoy being high for several hours. Stretch. Do bed yoga. Fall into a deep and dreamless sleep, which does, in fact, help.

8. Make a comprehensive list of all the drugs you’ve tried over the years for your multiple forms of chronic pain, and how they failed you — or you failed yourself — so that now you take opioids, because, of course, you are a loser.

9. Cuddle in bed with the dogs.

10. Play a game on your phone. Try to ignore the tinnitus. Fail at that, but win the game.

11. Nod off while playing a game or three on your tablet.

12. Toss and turn, while trying to not disturb the husband or, more importantly, the dogs, and wonder why the fuck your leg won’t stop jumping around.

13. Embrace your identity as a total loser as you take a low-dose gabapentin from your dog’s stash. Think: This should take the edge off the nerve pain. But just one pill, lest I lose my ever-loving mind. (Not an exaggeration.)

14. Do a guided meditation by way of an app on your phone. Observe your mind wander to thoughts of insurance — not very complimentary thoughts. And to the nurse who said you were “not a very squeaky wheel.” And to the fellow patient at your rheumatologist’s office who giddily declared his pain level was 0!

15. Zero? Zero! Schweine Hund! Arschloch! ¡Pendejo! You can not remember the last time your pain level was below 3! WTF?!

16. Breathe! Remember that you’re working on radical self-love, which means not using dehumanizing language, among other things. But … Fuck it! You hate the goddamn pain scale. And all this prior authorization shite. Also, reactionary and ineffective FDA policy. But mostly now not being able to sleep.

17. Eventually, you decide to make a gratitude entry in your journal and that helps a bit.

18. Next day you go ahead and take the nsaid meloxicam and cross your fingers that your stomach can take it. Maybe take one of your man’s omeprazoles. Or not really, as that’s illegal. And you don’t actually cross your fingers, but you do worry, because that’s just as useless.

19. Just go ahead and have another edible. Maybe you can read a short story or two before you nod off. (Current library loan, Ayiti by Roxane Gay!) Hey, maybe you’ll feel creative and write something. No pressure.

20. Realize you don’t have the strength to launch fireballs at the FDA; hence, you’d need to hire a catapult operator. Wonder what that might cost.

21. Recognize that you have taken a break from your loving-kindness practice, temporarily, in lieu of other meditation foci — and it shows! Give it a shot while stoned, because, why not? Direct it at yourself. It is possible that you may not, in fact, be a total loser.

Face of black dog with pointy ears, round forehead, and loving eyes.
The one of a kind presence that was Princess Holly Bollywood, she of many nicknames and much adorable ridiculousness.

*As opioids can be a little to very constipating, this may be literal for many patients.

*I still pronounce these rubbery treats as goo-mees, as did my German aunt for the 35 years I knew her, all in the USA. Never been a fan of anything gummy — worms, bears, etc. But I’ll readily take them over sweet-ass marzipan! I’m a freak!