I Stand Here Sobbing

It’s a few weeks ago. My workplace hosts a Benefits Bash. You know, one of those events where the health insurance people and the life insurance people and the college savings people and the benefits team and whoever else gathers together to hand out info on the next year’s plans.

They try to make it fun. The room is full of giveaways, like stress balls, pens, and notepads. They have refreshments. It’s kind of a hubbub as folks mill around, pick up information, and socialize a bit.

Except for me.

I stand sobbing at the prescription plan table.

My workplace announced we’ll begin a new prescription plan carrier on 1/1. This is part of their effort to stop mounting healthcare premiums. They hoped this would be a completely “neutral” change with no ill-effects.

But in the middle of the Benefits Bash, I find out the new plan “excludes” my husband’s major medication for his Young Onset Parkinson’s.

First, lemme give credit where it’s deserved: the benefits people at my workplace are kind. The prescription plan people are kind. The benefits brokerage people used by my workplace are kind. There is an appeal process and they will help me through that. Hopefully, the medication will be approved in the long run.  Even if the drug doesn’t get approved, the drug manufacturer may be able to help us with expenses. No one switched prescription plan carriers in order to make things harder for me or my family.

But.

But, but, but.

None of that matters as I stand here sobbing.

(Yes, intentional references to Tillie Olsen and Nancy Sommers.)

Gary was diagnosed at the age of 30. Now, he’s 37 with advanced Parkinson’s Disease. None of you want to hear the litany of symptoms and issues that have accompanied his PD.

You really don’t.

Parkinson’s Disease kills the brain cells which produce the neurotransmitter dopamine. Without dopamine, your brain has a really hard time relaying messages to control a whole bunch of things–movement, digestion, sleep, etc. Lack of dopamine also plays a role in depression and apathy.

So, the main medication people with Parkinson’s (PWP) take is some form of levodopa/carbidopa. Levodopa is absorbed in the brain and changes into dopamine. You need carbidopa in order to prevent the levodopa from being broken down in the bloodstream, so more of it can actually reach the brain.

Rytary is a special combination of levodopa/carbidopa and it’s the drug Gary’s been on for years. Until now, it has cost us $60 a month.

Out-of-pocket with no insurance, it costs about $1,500 a month.

$1,500 a month

$18,000 per year

$18,000 per year

$18,000 per year

(Okay, I just wanted to make sure you saw that.)

The new prescription plan will cover other formulations of levodopa/carbidopa, so that’s why they don’t cover Rytary. But here’s the thing:

  • “Regular” immediate release levodopa/carbidopa is absorbed very quickly in the body and then used up. This results in dramatic on/off times. You have too much dopamine and lots of dyskinesia (involuntary movement), then it wears off and you have not enough dopamine, so you experience dystonia (muscle cramping) and bradykinesia (slowness/stiffness). It’s up, down, up, down all day long with some good middle periods sandwiched in there.
  • “Regular” extended release levodopa/carbidopa releases slowly over time. This means it takes a LONG time for the effect to be felt and you might be “off” for quite a while before managing to feel good during the days, even when you’re taking the extended release formula before bedtime. Overall dopamine levels tend to stay lower even once the levodopa/carbidopa has reached it’s full efficacy.

Rytary combines the immediate release levodopa/carbidopa PLUS 2 different types of extended release levodopa/carbidopa. The 3 types work together REALLY well to give a very smooth day. Just enough dopamine to feel good right away, not so much that it plummets before the next dose. Gary has the best results when he takes Rytary 4x/day–it’s the smoothest we’ve ever been able to get his physical symptoms.

(If anyone wants to geek out and read some supporting research.)

So. That’s why we need it.

Hopefully it will get approved.

Hopefully, hopefully, hopefully. 

The worst part? We can’t even begin the process to get Rytary approved until mid-December at the earliest…and possibly until January 1. We are going to have to cross our fingers that the process moves quickly and we can get answers (HOPEFULLY APPROVAL) before he runs out of pills in mid-January.

(What if we don’t know by then? Stop worrying, Sarah. You’ll figure it out. Right? Tell me right. )

But even if it DOES get approved? Here’s how this has already impacted us.

– I’ve spent hours discussing our situation with multiple folks from benefits, from the prescription plan, and from the healthcare brokerage people.

– I’ve spent a bunch of time investigating whether we should drop Gary from my insurance and try to get him on a Medicare Rx plan. Not sure which of those plans might cover Rytary–do any? But here’s the kicker: open enrollment for a Medicare Rx plan ends in December, but we won’t know about this until January. We don’t want to drop him from my insurance unless it is absolutely necessary.

Stress. Stress, stress, stress. So many what ifs and then whats. So many uncertainties.

– I’ve wondered if I should be looking at other jobs. I love my current job. LOVE. But…if we can’t figure out a way to make this work, I can’t afford $18,000 a year for a medication. And I also can’t bear to see Gary live with a lower quality of life than he has now.

There are days we barely have enough spoons to get by with his current quality of life. I can’t imagine how much worse it could get. (Except I can, because we’ve been in worse phases of this stuff. I just…really don’t want things to get that bad. I’d say I’m not sure I can handle it, but I always manage to find a way to handle it. But. Please, no.)

– Lots of tears. I’ve spent quite a bit of time crying about this already. In fact, I have a hard time talking about it without crying. I cry out of worry and fear, I cry out of anger. Not anger at any individuals, but anger that our system allows for this. I cry because I’m kind of embarrassed about crying about it in front of people who are trying to be kind–and then I cry because I’m mad at myself for being embarrassed about it, when this is a situation that warrants strong emotion.

NO ONE should have to worry about losing access to a needed medication.

NO ONE should have to possibly pay $18,000/year for a medication. How is that even a thing? Seriously…how is that possible?

I have a very good job with a very good employer and we purchase the best healthcare plan they offer.

Our healthcare system in this country is BROKEN. 

Utterly broken.

The unseen hours of work and research and stress about things like this have a HUGE impact on care partners, people with disabilities/diseases, and our families. I have a piece on care partners coming out soon in Disability Studies Quarterly; I’ll link to it here when it’s available.

So. I’ll keep you all updated. I’ll hope for the best.

But I wanted to use my voice and my situation to illustrate that OUR HEALTHCARE SYSTEM IS BROKEN.

Thank you for reading and caring.

Love (Even if I Don’t Remember the Color Feather in Your Hair)

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Picture of a crying baby. (Not one of mine.)

I’ve been reflecting on parenting a lot lately–how it changes as your kids grow. When they’re little, parenting is an exhausting slog of meeting physical needs. Do you remember the sleep deprivation? The agonizing over whether to feed them rice cereal or sweet potato first? The constant vigilance over their safety as they learned to move about the world? The tears and the smiles. The sleep deprivation–did I already say that?

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Three colorful plastic dinosaurs, one holding a sign that says, “Howdy.”

Then come the toddler years, full of play so alternately-wonderful-and-agonizingly-boring I often wondered if I could gouge my own eyes out with a plastic dinosaur. My daughter used to spin elaborate “role playing” scenarios: Mama, I’m going to be a mermaid and I have medium brown skin and a green tail with kind of aqua scales right on the tip and I have long flowing hair that’s braided with an orange feather and I have some purple flowers right here and then I have bras made of orange and purple seashells and my name is Cassidy and I have a pet dolphin named Banana who is blue with a shell necklace. Mama, are you listening? Well then, what color feather do I have in my hair?

Elementary years: where kids make friends and lose friends and experience the joys of school and the boredom of some-parts-of-school. My kids first experienced being left out on the elementary school playground. My daughter was surrounded by other girls and grilled/taunted. My one son was told to “man up” and not be “too sensitive.”

As they get older, I found parenting focused on allowing them as much independence as possible within a structure that set boundaries. They learned to express themselves, and tried all sorts of behaviors and activities. I did lots of modeling relationships, lots of discussions about identifying emotions and acting on them appropriate. Lots of listening.

My three kids are all tweens and teens now, in middle school and high school. Two of my kids are taller than I. One of my kids is dating for the first time. All of them have friends I haven’t met yet. Each of them still needs some boundaries and reminders–that’s enough screen time, did you brush your teeth?, drop that tone of voice and talk to your family like you love us–yet each of them yearns for more freedom. So what’s my role as a parent now?

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A parent and child walk on a beach at sunset.

I want to be the safe place they can bring anything and everything.

I want to be the person who will always listen and believe them.

I want to be able to share my own experiences in ways that are helpful, but to always remember they are their own people with their own ways of solving problems and thinking about the world. I want to give them that space.

I want them to start seeing me as a person, not “just” Mom.

I want them to understand the richness of our authentic selves. I want them to know IT GETS BETTER. After these teenage years–these hard, hard teenage years–it DOES get easier to be your full and authentic self.

I want them to know I understand how hard these years are. And I’m here, no matter what comes next.

I want to be fully present, fully loving, fully safe.

I want to hold them close, even as I hold my breath and watch them walk away.

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A simple red heart.