But Have You Tried Any of the Coupons?

I'd put off going to the pharmacy for about 3 months now. It's come to my realization that when I think about going there, I immediately become anxious. I find myself avoiding the pharmacy when I just go grocery shopping. Oftentimes, I avoid that Kroger all together, because just being there has me feeling as though I can literally feel the excess Cortisol entering my bloodstream. This is the result of years of leaving the pharmacy, disheartened and, often, in tears, without any medication in hand to even amend for the trouble. Every time I go, it feels like a game of Russian Roulette to see how much my medications cost.
But I needed to go, so I inwardly groaned, and I drove to Kroger. I placed my best attempt at a steel face on, and I walked up to the pharmacy. I told them what I needed: I needed Tresiba, one of my new long acting insulins, and I needed the new birth control that my OB prescribed to me. I did not ask to get anything else filled. There's no point - I wouldn't be able to afford it. I walked around the store to pick up some groceries while I waited. My phone pinged: I grabbed it from my purse.

Text message from the pharmacy.
"Your Rx is ready. Estimated total is $962.73."

This number is staggering, but I hardly blink anymore. This is how it goes - it's American health care. I can't say it doesn't disturb me, though. Even I've noticed the dollar amount ever creeping up when I ask how much my insulin will be. $250 used to get me a pack of insulin pens - a pack of 5.
Now it gets me a little less than one vial that lasts half month that I have to draw out with a syringe, or $500+ for a month's supply of Levemir, in vials, which is a long acting insulin. A "cheaper" long acting insulin, mind you.

I breathe. I steel myself again. You don't understand. So many times I've gone to that pharmacy, and I've broke down in tears. I've cried at pharmacists and begged them to see if there was any other coupon, anything I might be missing to let me get my medications any cheaper. I ask them what the price is of a cheaper brand. But they won't tell me, because evidently, they need a prescription to tell me that.
So I walk up to the pharmacy, and I keep my face blank. They bring me my basket of those medications. I tell them I have coupons - oh, coupons, the lauded saviour of the chronically ill everywhere. Can't afford your medication? Look for a coupon. Have you tried Good Rx? They're great. I heard if you ask the pharmacist, they'll give you discounts. Whatever my medication woes are, everyone tells me to find some goddamn coupons.

Your coupons don't work.

I've had a coupon in hand every time I have gone to the pharmacy since my insurance plan with my employer switched. I've clutched those coupons, in paper or via my phone as a screenshot. I've applied for all of the savings plans for the 3 companies that sell insulin in the U.S. I've called foundations that are supposed to help people like me. They don't have anything available for the lucky ones with high deductible plans. To be one of the cracks - too "rich" to qualify for coupons, for programs, because I have insurance, or because I make too much.
Too poor to afford the medication I need to keep me alive.

The last 4 coupons I tried? Didn't work. They took $100 off of each of my insulins. They were $465.00 each before. That brought them to $365.00 apiece, for a months supply. That doesn't take into account the other supplies, but I don't try to refill those anymore, because there's no point. I'll get the test strips for cheaper. I have enough pen caps and lancets to last a lifetime. I never use my Glucagon anyways. I have some old expired Ondansetron in my cabinet for the sick days, so I can keep food down and won't get low in case of nausea.

I was very hopeful about these coupons. The first one I clutched was from my OB because she said my insurance might not cover the new birth control, which I wanted to try because I was having some bad side effects from the other ones I had tried. The second was for Tresiba - "pay no more than $15 for 12 refills," it promised. A nondiabetic may look at this coupon and think all of your problems are solved.
I look at that coupon with skepticism, because there's always a reason why they don't work.

But I hand them the coupons when I'm told my insurance covers neither of the medications. I try to keep my face blank again, but inside my mind is racing, and inside my heart is sinking, wondering if there will ever be a time in my life where I'm not consumed by the worry of how much the bill at the pharmacy is going to cost. People don't even stop to ask themselves what kind of toll that alone exacts on a Type 1 Diabetic. They tell you to get Coupons, to go to Walmart (we'll get to that later), but they never stop to think, "Isn't it stressful to constantly worry about how it's going to work out month to month? Or a year from now? Or two decades from now?"
The answer is, yes. It's a waste of my very brain space, but that worry is a seed, and that seed has grown into a tree, and it's forever lodged inside of my mind, planting doubt and anxiety and worry atop anything else stressful that may be occurring in my life at the time. These are the kind of thoughts that make you tired. They make you want to stop trying to fight so hard and devote your energy to this same old fight, month after month. They make you bitter. They make you angry. They make you defensive, like a little kid that's been bullied too much, except the bully is big pharma, and big pharma is telling you that their bottom line is more important than your life, but have you tried some coupons?

So... by now you're probably realizing that I'm very sick of being told to get coupons. I have goodRx the app downloaded on my phone. I've applied to EVERY program out there. If there's a coupon out there -- trust me, I know it. I hold my breath almost. The woman hands the coupons back to me. "They need to be activated," she says.
So I sit down. I call the number on the Tresiba coupon. It doesn't work. It tells me the number has changed.
So I call that number. I answer the prompts to see if I'm even eligible for the coupon. I get hung up when it asks me if I have insurance that covers it. Kind of? With the deductible it doesn't.... but I guess without the deductible it technically would...
I hit the number for no. "We're sorry, but you're ineligible. Goodbye."
So I guess that was the wrong answer. I call back. I go through the prompt again. I answer yes this time. Then it tells me to wait for the next available rep.
The coupon for the birth control is easier. I can text to activate. I put my headphones in and start this while I wait. I go through the prompts. When I get to the one about agreeing to receive information about the drug, I hit no. I don't want spam email.
"Sorry, you're ineligible." It texts back. I sigh. I try to type yes and send. Doesn't work. I start the prompt over this time. I answer yes to the question. My card is activated. One down, one to go. The phone rings, a person answers. I give him the card number. I wait for another 5 minutes.
"The card isn't valid anymore." He tells me.
"But I just got it from my doctor," I reply.
"Sorry." He says. "Check the website for a new card."
I sigh. I thank him, feeling empty inside. I go to the manufacturer website. I go through the same prompt of questions again. I download a different card. It's just a Novo Nordisk savings card. There's no promise of $15 per fill, or anything like that. I've been at the pharmacy about 50 minutes now. I've come after work, and I'm hungry. It's almost 7. I hand her the first coupon, tell her it's activated.
It works. It's not as cheap as I think it will be from what the coupon said (pay no more than $35 for a 3 month supply!), but it takes $337.00 for 3 months and turns it into $100. I give her my phone.

"Wow, this is only the second time I've held an iPhone X!" She says. I look at her blankly. She types in the coupon. I put my iPhone X into my expensive purse. I can afford these things. They are pennies in comparison to the medication I need daily, for a hormone my body has cheated me out of making in a bad draw of genetics. My insulin is so expensive, I don't even want to try to worry about affording it.
"It's cheaper than insulin," I tell her, and she looks at me and appears confused. She's a tech, and she looks a couple years younger than me.
"That was a joke," I said, trying to be more lighthearted.
"Oh..." she laughed. "I thought you were for real."
"Well, it was a joke. But I mean, that is for real. This phone is cheaper than the medications I'm trying to get filled."
She looks a little shocked at that. Surely she's filled insulin before?
But she goes back to typing. I go back to trying not to lose my shit at the pharmacy for the dozen and a half time. I breathe calmly. I think nice thoughts. I tell myself it's okay either way.

"Well, looks like the coupon doesn't work. Your insurance doesn't cover this kind of insulin. We'll try to get a prior auth and call you in a few days. Maybe it will work then."
She pauses. "You have insulin to last you until then?" she asks.
I shrug. It doesn't matter how I answer this. They can't help you even if you do.
"I'll figure it out."

I swallow. I told myself to expect this. The coupons rarely work. I tell her that would be great. I pay for the birth control with my HSA card. I tell her I have no questions. I leave. I swallow back the tears, stuck in the back of my throat. I want to sit in my car and cry again, like I've done every time I leave the pharmacy. I don't even want to buy the groceries I picked up. But I do this, and I get into my car, and I don't cry. I just think of this blog post I want to write, instead, because it keeps me from crying sometimes. But I already cried as I wrote it, because my mind flashes to this stupid conversation I had on Facebook a few days back, where I liked a post one of my old friends posted about how insulin is unaffordable (he isn't diabetic, and I'm always happy to see non diabetics spreading information  on the current insulin crisis).
And some lady just replies, "you can buy insulin at Walmart for $25. A lot of people just don't know this."

I try to explain to this woman why this is not a solution, but, as Facebook debates often go, they don't. This woman had gestational diabetes and knows everything she wants to know about the current state of insulin in the United States. She still has blood sugar problems. She had to use insulin and just got it from Walmart and was just fine when she was pregnant. 6 long months of blood sugar woes, and you know everything. Evidently. It's been 8 years for me. I've heard of Walmart insulin. A lot. Because, of course I had. I've always looked for every possible solution for me. For a long time, I tried to put off vial and syringe insulin, because syringe injections are more time consuming, less precise, messier, and more inconvenience than insulin pen useage. And the syringes are bigger. After doing both, I can say they mostly feel the same, but the needles are thicker and I am still quite afraid of needles, but I do it anyways, because I like to live. I've used almost every insulin I can get my hand on - Novolog, Humalog, Humulin R, Novolin R. Lantus, Levemir, Tresiba. Anything. Because anything beats dying. I've bought this insulin. I've accepted it from strangers. I've accepted it from friends. I've gotten samples from doctor's offices.

Here's the thing. The insulin that Walmart sells, has been around for a very long time. It was used quite a while ago. And it does work. It doesn't work as well, but it works. But here's a little diabetes education for you:
They have rapid acting insulin now that takes effect immediately. They have rapid acting that takes effect in 15 minutes. You have to take insulin prior to any meal with carbohydrates.
Walmart insulin? It's short, not rapid acting. Walmart insulin takes about one hour to kick into effect. This means you have to inject one hour before you eat. Do you always know if you're going to eat in an hour? What if you go to a restaurant? Or you're out with friends? On a date? What if you work in healthcare (like me) and you run late with a patient? What if you just want to eat a snack? Do you guess, and risk being low, or do you risk being high because you didn't give it in time? What you have is an insulin that works,  but it drastically changes your quality of life.
And NPH. Don't even get me started on NPH. NPH is so old, I was never even educated on using it because it was phased out before even I was diagnosed. NPH is a type of long acting, but since it is very different from the long acting insulin of today, it severely restricts your ability to eat with relative freedom. Mealtimes have to be meticulously planned, and you have to meticulously count your carbs. I bolus through a method called sliding scale - I count (or try to) the amount of carbs I eat based on nutritional information or best guess available. I give insulin based upon an insulin to carb ratio to control my blood sugar. With NPH, you have to restrict your meals to a specific amount of carbs - 30 grams, 45 grams, etc. It gives you a lot less freedom to eat meals if you can only eat within a certain parameter. It gives you very little freedom to eat spontaneously or go out to eat. Today, there are long acting insulins that let you use sliding scale, and they work 24 hours. There's a new one that works up to 48 hours. But these are made by a mere 3 companies in the U.S., and there's no generic, because they claim insulin is too "complicated" to make one - a drug that has existed for 100 years, and was once sold for $3 a vial, by a man who didn't patent it, so as to make it affordable for others.
So what do you get when you go to Walmart? You get the bare minimum of care. You get vials and syringes, insulin that is outdated in type, and you get a drastically reduced quality of life. And what you often get as a result, is poorer blood sugar control.
And what you get from that, is higher A1C's. You get eventual complications. You get judgement from health care providers about why your A1C isn't better, when you're just trying to make it by enough to get any kind of insulin that keeps you alive. You read about a diabetic koala bear who got the latest and greatest continual glucose monitor at the zoo, but you can hardly afford a month's supply of vials for you - and meanwhile, the surgeon general is making comments about how diabetics ate too many cheeseburgers which is why they are in their predicament, and senators say we don't deserve to be covered by a pre-existing mandate when we are at fault for having this disease. You read about incredible new technology, the birth of closed loop systems and pumps and continual glucose monitors and instant acting insulin. But you cannot have them, because your insurance isn't good enough, and it's too expensive to pay cash.

And if you're me, you suffered from depression in the last 2 years, shelled out a $225 copay to go to the endocrinologist, didn't hear the end of how bad my A1C was after 3 years of not having insurance and just trying to survive, and finally got things back on track with a pretty remarkable new insulin called Tresiba.

But the coupon didn't work today.

And so I'll go back to using the doctor's samples, the Walmart insulin, the anything's-I-can-get. I'll try to keep my sugar under control and I'll keep reminding my doctor that I can't get a pump this year because my deductible is $4500. And I'll keep making do. Yes, I will survive. I'm not going to die.

But when is it my time? When is it my time to stop ceasing to merely...not die? When do I get to thrive, to have the latest diabetes tech, to have the best new insulins, to get my A1C under 7.0 or 7.5 or, hell, let's throw it out there - under nine, or ten, for the first time in I can't remember when? Did I not work hard enough? Is Diabetes not a sensational enough issue for people to care about? Because we've been crying out for years, and no one has answered.
They've told us that there are coupons, while at the same time, prices have almost doubled for the insulin I could never afford even when it was cheaper.

But I get tired of telling people this, because part of me knows that the people around me get tired of hearing these same cries for help, or cries of trying to raise awareness for this issue, and they don't want to hear it anymore. How many times can you say something until it's a broken record to someone else? Even when it can't ever be a broken record to you, because it effects you daily?

And I'm discouraged. I can't have the care I want or need. I have the care that keeps me alive by the kindness of strangers. I go by Doctor, but I still can't afford insulin. If my problem is a problem caused by my lack of effort, please tell me where along the line I fell short. But today? I'm just tired of this same old problem. Tired of the anxiety, the worry. Tired of the constant fight that I used to think would be better after I graduated - but I'm still trying to figure out how to fix it. And I'm tired of people who think they know the solutions, but know nothing of what walking in my shoes is like - try to brush my concerns, my problems to the wayside, with recommendations to use coupons or try the Keto diet or fast to boost my immune system or go to Walmart.
You do not understand.

But I hope this post helps you to.

Be Kind: What (Almost) One Year Working in a Therapist Has Taught Me.

I'm walking down the hall of the main wing at work, and the sound of a man playing guitar and singing reaches my ears. This is not a sound I hear often in this place. I peer into the room - it's a younger man, and I'm slightly caught off guard, as he has a strikingly beautiful singing voice. He is sitting next to the bed of a woman I have never treated, but have ofttimes seen sitting in her gerichair in the same wing I'm at now. This woman cannot speak. She cannot move her arms or her legs, and she appears to be in pain all of the time, because her face is locked into an almost permanent grimace. My heart goes out to her every day I see her, and I always make sure to make eye contact with her as I walk past her when she's out, and smile. I do this not to be pitying, but because it's a fact I've found, that a lot of people in places like where I work, just need to be seen. Need to be heard. We strip our elderly of so much in these places - to the point where I feel that they can almost lost a part of their identity. All of us in these settings should practice kindness, treating others like individuals, like humans with rich backgrounds, sick or not. This woman is on hospice. She has looked progressively worse over the past few weeks. Her roommate used to be so sweet to her. She'd sit out and hold hands with the lady, but her family moved her somewhere else, so now she doesn't have anyone to sit with her and quietly hold her hand throughout the days. I walked past that room and it almost made me tear up, to hear the man with the sweet voice singing her beautiful songs. I hope it brought some beauty to her life.

I'm treating a man yesterday. We are sitting outside, as he gets cold in the gym. "I've been here before," he says. "Twice. But I can't remember. I know I forget things, but sometimes I even forget that, too."

A woman called me over to her bedside while I was treating her roommate. She has been on hospice for a while now. A lot of times, she seems to speak jibberish, or yells, or doesn't make sense. But she looked at me today and in the clearest voice said, "What am I going to do once my roommate goes home?"
"I don't know," I replied. "I'm certain you'll get a new one."
"But we get along so well."
"I'm glad to hear it.", I responded.
"No, you don't understand. What am I going to do? Who am I going to talk to? You don't understand what it's like to be me. I'm just a dying woman who wants to be recognized. Don't you understand that? I just want someone to talk to me. I just want someone to be here. I'm so lonely."

Isn't it hard not to keep your heart from breaking when you hear these things?

Days like this make me think: what fragile senses of control we have over our lives. Just when we think we've got it, something out of our control always seems to happen, stealing away that carefully sought after sense of security. This was diabetes for me, and I'm sure as you read this, you can easily think of something that's been that for you. Working where I do always seems to solidify this for me, because here it's the things out of people's control that seem to steal away everything - even their recollection of the fact that anything is gone at all. It's easy to mourn for these things. If I stored away all of the sadness from my own life and the lives of the people I treat in my heart, it would be too much to bear. These things are designed to make us stronger, I suppose, but really, some days I just get tired. Where does the suffering of humankind end? Or does it? There's an answer to this if you're Christian - we certainly aren't promised easy lives, or lives where we won't suffer. This world is full of suffering and pain, just as much as it is matched with unspeakable joy, love, and goodness. This is what it is to be human in a nutshell, and as much as this can be hard to see face to face each day sometimes, it's a powerful reminder, that through our suffering, we must savor the little moments with beauty and peace, and build ourselves up to be strong, to face these times of hardship.

I can't even begin to express to you how much I have learned over the course of one year practicing as a physical therapist. And the crazy thing is, the important things I've learned aren't even about my clinical skills (although I've learned a lot of those). They're about working with people. They're about caring about people. This month marks one year of officially being employed, and August one year of working at my skilled nursing facility. My job is hard, and many would not consider it ideal or enjoyable. My office is a closet, the place where I work smells like, well, a nursing home, the gym could stand to be updated, the rehab department is currently a little bit of a hot mess, and I have days where patients yell at me, have hit me, and have projectile vomited across the room. We work holidays. A patient asked me the other day what I wanted to do, and when I told him I'm doing it, he seemed very surprised. There is little recognition. The paperwork is intense. Our stories of victories often go unsung. But, in my heart there is still a really big love for it. We must dive headfirst into often what seems like dark places to truly understand other people and why we are here. It is through the unpraised hard work, the little things that you know you can do, that you learn what is is to help other people, or if nothing else, why they need help so bad. I'm not saying go work at a nursing home, by any means. That's not for everyone nor does it need to be. But what I'm saying is, take a little extra time today to listen and open your eyes and ears to humanity. Ask yourself if there's something you can do. If an opportunity presents itself to help someone, consider doing it. And be kind. Above all, be kind. I try to remind myself of this daily, especially when I'm not feeling particularly kind, and not acting like it. But you'll be surprised at how far it can go, and how much it's sorely needed, by all of us.