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.
Tuesday, June 26, 2018
Monday, June 11, 2018
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.
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.
Tuesday, February 6, 2018
Diabetes: What's It Like?
This is totally ripped off a post I read on Six Until Me, the Diabetes blog that originally got me started on wanting to blog about my Diabetes. It wrote about what taking insulin was like and I found that fascinating. Diabetes is an incredibly misunderstood, unique, and complicated disease with a lot of nuances that most people wouldn't, well, think to even think about. I know I didn't prior to my diagnosis - the most I had read was in a book about a girl with Type 1. She had to return her lunch tray at camp to get a "diabetic friendly" option and everybody silently judged her for it. Little 6th grade me seethed a little at how unfair that seemed. She also felt terrified of the concept of ever having to stick herself with a needle every day. My teacher, who had diabetes, made us read that book. Back then, I thought that would be... the worst hell imaginable, honestly. To face needles every day.
How trapped I would feel.
Here I am, though. It's been more years than I can count since sixth grade. Almost 13... I've got a disease I never wanted. In fact, I got the one, singlemost disease that I though was the equivalent of hell as a child. What's that like?
When I got Diabetes, I thought it was a mistake. It was like waking up to a bad dream that was real. My mind tried to grasp at the last possible thing it could to successfully rationalize that what had happened wasn't real. I tried to wake up. I remembered waking up, fuzzy, nurses passing by m room. Begging for a coke slurpie for some odd reason and fixating on it. I was told I couldn't have those anymore. I was allowed some ice chips after begging, insanely thirsty from what I would later learn was caused by insane hyperglycemia. Someone have me a potassium shot. It stung so bad. Mind you, I hated needles, so we were off to a bad start.
I spent a lot of time crying that week. I felt alone. Why had this happened to me? Was I going to die sooner? I wanted to know the answer to morbid questions. And was I really going to have to take insulin forever? Why?
When I went home, it didn't get better. I cried every night. The truth is, Diabetes is loneliness. It's incredible loneliness. Imagine having a misunderstood disease that people make fun of everytime they eat a donut. Imagine people waving it off and laughing, saying, "you can eat anything you want if you just give a shot, right?" or the opposite, "it must suck to not eat any sugar." Imagine that you know no one else with it. Imagine everyone else wants to give their opinion on what they think is right for you. Imagine how many people turn and whisper to their friends about how gross it is that you're giving shots in public. It's a glass box. It's the disease where no one can see it, but it's there, and it separates you from everyone.
Diabetes is pain. You decondition yourself to it. I give shots slowly. I slowly prick my skin, and then gauge how painful it's going to be as I push the needle into my skin, and if it hurts to much, I go to a new spot. It's the only way I can get around my fear of needles. It's shrugging off bruises from needles and getting blood work all the time and imaging your skin is a giant pincushion that everyone expects you to be okay with without asking you how it makes you feel.
Diabetes is having a life ripped from you. I used to know a life where I could eat without a second thought. When I was first diagnosed, I used to dream of those times. And now I reflect back on them. I miss what I had, honestly. It's stupid. but I miss how healthy and worry free I was.
Diabetes is money. Truly, it is. Don't have money? Insurance? Go f*** yourself. Because the importance of your life is automatically determined by how good your health coverage is. And if it isn't good, then you settle for subpar. You settle for black market. You settle for pity drugs. You settle for used syringes and a couple of packets of test strips here and there. You struggle from all the stress that having an incurable illness entails + the feeling of inadequacy and unworthiness of having a disease that you take care of by begging for medicine and then you're judged on how you don't manage it perfect by people and med professionals who think it's as easy as just giving a shot when it's not. It's calculating a hundred different factors and hoping your body responds the same way each time.
It's depression.
It's feeling trapped in a life you didn't want.
Diabetes is judgement. It's getting angry at your situation. It's getting depressed over the skyrocketing cost of insulin and wondering if there's going to come a day when you don't have any more. It's trading financial security for medication someone who owns a pharmaceutical company set the price for without thinking of what you'd have to sacrifice for it. It's a little girl, honestly, and I mean that - it's a girl, wondering how she's going to afford it for the next 7 years. I was a girl when I got this disease. Not even an adult. And I've thought about it every day since.
Every day, Diabetes is something you think about. It does not end. Wake up. Check my sugar. Do I feel nauseated because I'm sick or because my sugar is high... am I peeing at night because I have to pee or because my sugar is high?
If I give (x) amount of insulin will I be low when I'm at work at noon? I was last week... maybe I'll do a unit less.... if I'm high I guess I'll fix it... but my A1C will suffer.... I'll take the lower amount. My new vial doesn't seem to be as potent as the old one. Should I use a 5 carb to 1 unit ratio of 7 carb to 1 insulin unit?
Leaving home now. Can't find my insulin vial in my purse. Where is it? I spend 5 minutes rifling through my purse. Did I remember spare syringes? No, but there's my insulin. I'll use the syringes I have. They hurt but I shouldn't have forgotten to grab the other ones. Happens.
It's lunch. Damnit. I am low. No sense checking. I can feel it... I guess I can give insulin after I feel better... just got called into a meeting... my coworker cringes and screams every time I go to give insulin because she tells me she hates needles. I guess I'll go to the other room.
it's 4:00. Am I sweating because I'm hot? Am I low again? Where are my glucose tabs? I forgot to get a small container. I only have that big container and it's in my purse. How will it look in my meeting with my patient's family if I leave to get glucose tabs? Is that unprofessional? I mean, passing out is unprofessional. And oh my god I am so thirsty. I'd kill for some water right now. Focus. We're talking about discharge plans for patient x. I am so shakey right now. When is this over?
Okay, I'm home. I'm hungry. I shouldn't have a snack then... I'll have to give another shot... let's go get food. We go out somewhere that's not a chain. I'll just have to guess how many carbs are in this. Here we go.
I'm about to crawl in bed. Did I give Tresiba? Novolog? Should I check one more time? I'm tired... maybe it can wait until morning.... but my endo will yell at me. I'd better check. It's a little high. I give insulin.
I wake up at 1 am. I'm low. I feel weak and shaky, but I stumble in the dark to grab some food, hoping I won't be high again by morning.
This is just one example of a day in the life. It's never the same.It's easy to judge, easy to say you would do things different, but if you have to stay on top of it everyday, statistically, you're going to forget a thing or two every now and again.
This is a sad post. I've been sad lately. I'm frustrated by my illness. I'm frustrated by the technology at my fingertips that comes with an insane price. I'm sad that I have this disease I never wanted and I remember how I never had it. I'm sad because I feel misunderstood and I feel lonely and I don't want this disease. I was I could throw it far away. I'd do anything not to have it. But day after day, it's here. We're stuck with each other, so long as the T-cells in my body keep attacking Beta cells they shouldn't. This post is sad because diabetes makes me sad. And many days I'm happy, but sometimes I go through sad phases...sometimes I just need to share that to get it off my chest.
How trapped I would feel.
Here I am, though. It's been more years than I can count since sixth grade. Almost 13... I've got a disease I never wanted. In fact, I got the one, singlemost disease that I though was the equivalent of hell as a child. What's that like?
When I got Diabetes, I thought it was a mistake. It was like waking up to a bad dream that was real. My mind tried to grasp at the last possible thing it could to successfully rationalize that what had happened wasn't real. I tried to wake up. I remembered waking up, fuzzy, nurses passing by m room. Begging for a coke slurpie for some odd reason and fixating on it. I was told I couldn't have those anymore. I was allowed some ice chips after begging, insanely thirsty from what I would later learn was caused by insane hyperglycemia. Someone have me a potassium shot. It stung so bad. Mind you, I hated needles, so we were off to a bad start.
I spent a lot of time crying that week. I felt alone. Why had this happened to me? Was I going to die sooner? I wanted to know the answer to morbid questions. And was I really going to have to take insulin forever? Why?
When I went home, it didn't get better. I cried every night. The truth is, Diabetes is loneliness. It's incredible loneliness. Imagine having a misunderstood disease that people make fun of everytime they eat a donut. Imagine people waving it off and laughing, saying, "you can eat anything you want if you just give a shot, right?" or the opposite, "it must suck to not eat any sugar." Imagine that you know no one else with it. Imagine everyone else wants to give their opinion on what they think is right for you. Imagine how many people turn and whisper to their friends about how gross it is that you're giving shots in public. It's a glass box. It's the disease where no one can see it, but it's there, and it separates you from everyone.
Diabetes is pain. You decondition yourself to it. I give shots slowly. I slowly prick my skin, and then gauge how painful it's going to be as I push the needle into my skin, and if it hurts to much, I go to a new spot. It's the only way I can get around my fear of needles. It's shrugging off bruises from needles and getting blood work all the time and imaging your skin is a giant pincushion that everyone expects you to be okay with without asking you how it makes you feel.
Diabetes is having a life ripped from you. I used to know a life where I could eat without a second thought. When I was first diagnosed, I used to dream of those times. And now I reflect back on them. I miss what I had, honestly. It's stupid. but I miss how healthy and worry free I was.
Diabetes is money. Truly, it is. Don't have money? Insurance? Go f*** yourself. Because the importance of your life is automatically determined by how good your health coverage is. And if it isn't good, then you settle for subpar. You settle for black market. You settle for pity drugs. You settle for used syringes and a couple of packets of test strips here and there. You struggle from all the stress that having an incurable illness entails + the feeling of inadequacy and unworthiness of having a disease that you take care of by begging for medicine and then you're judged on how you don't manage it perfect by people and med professionals who think it's as easy as just giving a shot when it's not. It's calculating a hundred different factors and hoping your body responds the same way each time.
It's depression.
It's feeling trapped in a life you didn't want.
Diabetes is judgement. It's getting angry at your situation. It's getting depressed over the skyrocketing cost of insulin and wondering if there's going to come a day when you don't have any more. It's trading financial security for medication someone who owns a pharmaceutical company set the price for without thinking of what you'd have to sacrifice for it. It's a little girl, honestly, and I mean that - it's a girl, wondering how she's going to afford it for the next 7 years. I was a girl when I got this disease. Not even an adult. And I've thought about it every day since.
Every day, Diabetes is something you think about. It does not end. Wake up. Check my sugar. Do I feel nauseated because I'm sick or because my sugar is high... am I peeing at night because I have to pee or because my sugar is high?
If I give (x) amount of insulin will I be low when I'm at work at noon? I was last week... maybe I'll do a unit less.... if I'm high I guess I'll fix it... but my A1C will suffer.... I'll take the lower amount. My new vial doesn't seem to be as potent as the old one. Should I use a 5 carb to 1 unit ratio of 7 carb to 1 insulin unit?
Leaving home now. Can't find my insulin vial in my purse. Where is it? I spend 5 minutes rifling through my purse. Did I remember spare syringes? No, but there's my insulin. I'll use the syringes I have. They hurt but I shouldn't have forgotten to grab the other ones. Happens.
It's lunch. Damnit. I am low. No sense checking. I can feel it... I guess I can give insulin after I feel better... just got called into a meeting... my coworker cringes and screams every time I go to give insulin because she tells me she hates needles. I guess I'll go to the other room.
it's 4:00. Am I sweating because I'm hot? Am I low again? Where are my glucose tabs? I forgot to get a small container. I only have that big container and it's in my purse. How will it look in my meeting with my patient's family if I leave to get glucose tabs? Is that unprofessional? I mean, passing out is unprofessional. And oh my god I am so thirsty. I'd kill for some water right now. Focus. We're talking about discharge plans for patient x. I am so shakey right now. When is this over?
Okay, I'm home. I'm hungry. I shouldn't have a snack then... I'll have to give another shot... let's go get food. We go out somewhere that's not a chain. I'll just have to guess how many carbs are in this. Here we go.
I'm about to crawl in bed. Did I give Tresiba? Novolog? Should I check one more time? I'm tired... maybe it can wait until morning.... but my endo will yell at me. I'd better check. It's a little high. I give insulin.
I wake up at 1 am. I'm low. I feel weak and shaky, but I stumble in the dark to grab some food, hoping I won't be high again by morning.
This is just one example of a day in the life. It's never the same.It's easy to judge, easy to say you would do things different, but if you have to stay on top of it everyday, statistically, you're going to forget a thing or two every now and again.
This is a sad post. I've been sad lately. I'm frustrated by my illness. I'm frustrated by the technology at my fingertips that comes with an insane price. I'm sad that I have this disease I never wanted and I remember how I never had it. I'm sad because I feel misunderstood and I feel lonely and I don't want this disease. I was I could throw it far away. I'd do anything not to have it. But day after day, it's here. We're stuck with each other, so long as the T-cells in my body keep attacking Beta cells they shouldn't. This post is sad because diabetes makes me sad. And many days I'm happy, but sometimes I go through sad phases...sometimes I just need to share that to get it off my chest.
Wednesday, January 31, 2018
The Rule.
Coping with death is hard, period. There’s not a single easy thing about it. I’ve been relatively fortunate in my life thus far to have not gone through a tremendous amount of loss. I have had some very hard moments - I remember learning of the death of my grandmother, Violet, when I was 10 I believe. I never got to know my grandmother incredibly well, but I will always recall fond memories in her Naples condo, playing with Barbies, trying wheat germ for the first time, and visiting grandma at the Publix bakery where she worked. I'd always send my grandmother letters and she'd send cookies and the sweetest gifts back. I remember the last letter I sent, with new easter photos; ones with a real white bunny. Mom had reminded me to do so. I remember that my grandmother got the letter the week she died. Mom told me when I got home from school that day, and I spent the afternoon crying in my closet. I'd experienced a few other deaths from that point on - but none from people terribly close to me.
The environment I work in is a difficult place, in this respect. Life in a nursing home brings you face to face with people oftentimes in the last few years of their life. Or months. Weeks. Days. I remember my first patient to pass away - I remember his incredibly kind daughter, sobbing as she carried his belongings out. I didn't know him well. He had just arrived. But he was there one day, I told him good evening - and he was gone the next. I've had many other patients pass since then. It still hits me with sadness. I think that this is a natural and good thing. I've been told in clinicals to be careful with this; told I have an empathetic heart and to guard it. Not take things home with me. This is good advice. I care for all of my patients who walk through the door. I also know that the nature of my setting is going to bring loss across my path more often than not. Over the last two weeks, I've lost several more patients. One of them was found unresponsive and the paramedics tried to revive them for 45 minutes in the building before giving up. The door to the room was shut all day until the coroner came. I had to help him open the fire exit door to wheel the body out. I hated it. I think I am like every other person who hates death. There is always some kind of loss it leaves behind. Someone hurts, whether it seems obvious or not. I couldn't shake that last one off for a few days. I lost another one to pneumonia last week, and she was incredibly kind. I had just done her evaluation. We laughed in the gym together as I showed her how to do a TUG test to measure her gait speed. I never saw her again after that day.
This post is getting to seem really morbid. I'm not actually sure if it's socially acceptable to talk about all this, but I feel that it's a good way to let some of it out. Because the truth is, it is sad, and it is hard, and it helps to talk about it. Especially as a new grad, I believe it is particularly hard. I think we tend to get more invested than others who are more seasoned and experienced. I think we might take things a little harder. It's part of learning. I believe that I will get better at coping. I believe I cope fine now - but, honestly? Part of me doesn't ever want to get to the point where I shrug off death as though it isn't a big deal. I guess I've just spent so much time seeing how lovely and beautiful the lives of the elderly are to ever truly stop myself from caring and connecting with people. Don't get me wrong, I don't get along with all of my patients, but I believe that being sad is also a way to show respect towards someone's life and someone's memory. And I believe all of us deserve that when it's our time. Someone to think of us. Someone to care.
My own opinions aside, this week was the hardest I've experience so far, though. It hit me like a train I was not prepared for. Obviously, HIPAA prevents me from getting into great detail, however, there was a patient I have been treating since the beginning of October up until now. Really complicated case - multiple medical conditions making it impossible for them to return home alone, but perhaps, if enough progress was made, to an ALF. I picked this patient up following a PRN evaluation a few days into their time at my facility. I was one of the sole therapists working with this patient - for the most part, I ensured that they were on my schedule, as we worked well together and built a good camaraderie. I watched this patient go from not being able to roll over in bed, lift their head off the pillow, or lift their legs, to walking with a walker, over the course of months, because so many obstacles were in their way. The progress was incredible, and it was so enriching for me to see how hard work, dedication, and time spent investing in a patient could truly make remarkable things happen. I remember the first day standing in the bars. Then marching. Stepping! Triumphantly walking across the gym with contact guard assist. This patient took a lot of patience, and a lot of time. They frequently asked for some assist with setting up their room, making sure the heat was on, that their table was in the right place - things I was completely happy to help with (unbilled, of course). When they needed clothes, I'd go down to the lost and found and scour them for clean ones that would fit. I advocated for this patient when others wouldn't. They told me about living through things such as communism. We talked about traveling through Europe. I learned about their whole life over the course of months and was completely in awe of what an incredible array of experiences this patient had had. I remember so clearly the last time I treated them on Friday. I had just learned about the death of one of my other patients, and was reflecting on it sadly. I lingered for a moment at the door as I left my patient's room. They smiled, bowed their head a little, thanking me for my patience. I smiled in return, telling them I'd see them Monday, and we'd try to get out of bed and walk again next week. But... I'm sure you already know where this story is going. I came in Monday and they had gone out to the hospital. I asked, concerned, what had happened. Nobody seemed to hear me, so I didn't get an answer. But they'd been out once before... surely they'd be back. But Tuesday, I came in, and I saw their family cleaning out the room. Nurses hugging them. Crying. And I worried, but I tried to tell myself that it just meant that... maybe they would be in the hospital longer. It wasn't the case, of course. I did find out that they had passed away. I was silent for most of the rest of the day, sullen, trying to hold back tears. That Monday session never happened.
You're always going to have patients that touch your life if you're in health care. This patient was one of them for me. Just... an incredibly kind person. Someone who showed me how important it is to listen. To invest time and to truly care. And if you do that, you watch people flourish so much more than if you didn't show them you actually care. Someone who showed me how meaningful my work is. My coworker, who has been in this world of snf's so much longer than me, chided me a little. "It's the first rule of working here. Have empathy... but not too much empathy.
Or else you'll become old far before your time."
I tried to hold back tears. "I know," I told her."It's just hard. It's just so hard." And I did - I do. I know that's the rule. You can't get too invested. You can't care that much. I have a habit of wanting desperately to fix everyone that I encounter. I know I can't. I also know that I tend to try anyways. And I give things my all. I find it both a gift and a flaw. I think it can make your work incredibly meaningful. I also think it can make you susceptible to a lot more hurt. I'm not afraid of hurt - I know how to handle it. I know stress relief and work life balance is important. Hurt and I have a functioning relationship. I believe that it is healthy to feel it - it reminds us of our own human-ness. It reminds us that we are on this earth to love others and to show them kindness and to care deeply and that no matter how much hurt there is, a kind work or a listening ear or someone to believe in you is always going to be needed. It's how we get through another day. And that's why I'm willing to invest a little more. Hurting means that something mattered to you.
I know that I'm still a young therapist, and I have a lot to learn about loss and handling it and guarding my own heart so that I can have a long career of caring for others. I love my profession and I particularly love this setting a lot because there is such a capacity to touch people's lives in the geriatric setting. I firmly believe that it is a very special opportunity that some of us, not all, are called to do, and I just feel it on my heart at this time in my life, and perhaps always (who knows?) to do so. But it still hurts. And it's still hard. I was hurt. I teared up. I was angry. What's the point?, I thought for a while, even. Is it naive to think that the progress we make with people in this setting matters? Is it helpful if they end up here one day, gone the text. I remember this proverbial question from the first day I entered a nursing home as a student, and my CI told me confidently, of course it does. Anything that betters someone's quality of life is meaningful. I believe that, but it's hard not to feel bitter sometimes at the world. It's hard not to feel angry about the loss. I feel good in my heart about always doing what I felt was right in this case. But I still walked past that room today, glanced in at its emptiness, now sterilized and devoid of any life at all, and that Friday afternoon as I walked out the door following that last session is going to stick with me for the rest of my life.
I'll miss them.
The environment I work in is a difficult place, in this respect. Life in a nursing home brings you face to face with people oftentimes in the last few years of their life. Or months. Weeks. Days. I remember my first patient to pass away - I remember his incredibly kind daughter, sobbing as she carried his belongings out. I didn't know him well. He had just arrived. But he was there one day, I told him good evening - and he was gone the next. I've had many other patients pass since then. It still hits me with sadness. I think that this is a natural and good thing. I've been told in clinicals to be careful with this; told I have an empathetic heart and to guard it. Not take things home with me. This is good advice. I care for all of my patients who walk through the door. I also know that the nature of my setting is going to bring loss across my path more often than not. Over the last two weeks, I've lost several more patients. One of them was found unresponsive and the paramedics tried to revive them for 45 minutes in the building before giving up. The door to the room was shut all day until the coroner came. I had to help him open the fire exit door to wheel the body out. I hated it. I think I am like every other person who hates death. There is always some kind of loss it leaves behind. Someone hurts, whether it seems obvious or not. I couldn't shake that last one off for a few days. I lost another one to pneumonia last week, and she was incredibly kind. I had just done her evaluation. We laughed in the gym together as I showed her how to do a TUG test to measure her gait speed. I never saw her again after that day.
This post is getting to seem really morbid. I'm not actually sure if it's socially acceptable to talk about all this, but I feel that it's a good way to let some of it out. Because the truth is, it is sad, and it is hard, and it helps to talk about it. Especially as a new grad, I believe it is particularly hard. I think we tend to get more invested than others who are more seasoned and experienced. I think we might take things a little harder. It's part of learning. I believe that I will get better at coping. I believe I cope fine now - but, honestly? Part of me doesn't ever want to get to the point where I shrug off death as though it isn't a big deal. I guess I've just spent so much time seeing how lovely and beautiful the lives of the elderly are to ever truly stop myself from caring and connecting with people. Don't get me wrong, I don't get along with all of my patients, but I believe that being sad is also a way to show respect towards someone's life and someone's memory. And I believe all of us deserve that when it's our time. Someone to think of us. Someone to care.
My own opinions aside, this week was the hardest I've experience so far, though. It hit me like a train I was not prepared for. Obviously, HIPAA prevents me from getting into great detail, however, there was a patient I have been treating since the beginning of October up until now. Really complicated case - multiple medical conditions making it impossible for them to return home alone, but perhaps, if enough progress was made, to an ALF. I picked this patient up following a PRN evaluation a few days into their time at my facility. I was one of the sole therapists working with this patient - for the most part, I ensured that they were on my schedule, as we worked well together and built a good camaraderie. I watched this patient go from not being able to roll over in bed, lift their head off the pillow, or lift their legs, to walking with a walker, over the course of months, because so many obstacles were in their way. The progress was incredible, and it was so enriching for me to see how hard work, dedication, and time spent investing in a patient could truly make remarkable things happen. I remember the first day standing in the bars. Then marching. Stepping! Triumphantly walking across the gym with contact guard assist. This patient took a lot of patience, and a lot of time. They frequently asked for some assist with setting up their room, making sure the heat was on, that their table was in the right place - things I was completely happy to help with (unbilled, of course). When they needed clothes, I'd go down to the lost and found and scour them for clean ones that would fit. I advocated for this patient when others wouldn't. They told me about living through things such as communism. We talked about traveling through Europe. I learned about their whole life over the course of months and was completely in awe of what an incredible array of experiences this patient had had. I remember so clearly the last time I treated them on Friday. I had just learned about the death of one of my other patients, and was reflecting on it sadly. I lingered for a moment at the door as I left my patient's room. They smiled, bowed their head a little, thanking me for my patience. I smiled in return, telling them I'd see them Monday, and we'd try to get out of bed and walk again next week. But... I'm sure you already know where this story is going. I came in Monday and they had gone out to the hospital. I asked, concerned, what had happened. Nobody seemed to hear me, so I didn't get an answer. But they'd been out once before... surely they'd be back. But Tuesday, I came in, and I saw their family cleaning out the room. Nurses hugging them. Crying. And I worried, but I tried to tell myself that it just meant that... maybe they would be in the hospital longer. It wasn't the case, of course. I did find out that they had passed away. I was silent for most of the rest of the day, sullen, trying to hold back tears. That Monday session never happened.
You're always going to have patients that touch your life if you're in health care. This patient was one of them for me. Just... an incredibly kind person. Someone who showed me how important it is to listen. To invest time and to truly care. And if you do that, you watch people flourish so much more than if you didn't show them you actually care. Someone who showed me how meaningful my work is. My coworker, who has been in this world of snf's so much longer than me, chided me a little. "It's the first rule of working here. Have empathy... but not too much empathy.
Or else you'll become old far before your time."
I tried to hold back tears. "I know," I told her."It's just hard. It's just so hard." And I did - I do. I know that's the rule. You can't get too invested. You can't care that much. I have a habit of wanting desperately to fix everyone that I encounter. I know I can't. I also know that I tend to try anyways. And I give things my all. I find it both a gift and a flaw. I think it can make your work incredibly meaningful. I also think it can make you susceptible to a lot more hurt. I'm not afraid of hurt - I know how to handle it. I know stress relief and work life balance is important. Hurt and I have a functioning relationship. I believe that it is healthy to feel it - it reminds us of our own human-ness. It reminds us that we are on this earth to love others and to show them kindness and to care deeply and that no matter how much hurt there is, a kind work or a listening ear or someone to believe in you is always going to be needed. It's how we get through another day. And that's why I'm willing to invest a little more. Hurting means that something mattered to you.
I know that I'm still a young therapist, and I have a lot to learn about loss and handling it and guarding my own heart so that I can have a long career of caring for others. I love my profession and I particularly love this setting a lot because there is such a capacity to touch people's lives in the geriatric setting. I firmly believe that it is a very special opportunity that some of us, not all, are called to do, and I just feel it on my heart at this time in my life, and perhaps always (who knows?) to do so. But it still hurts. And it's still hard. I was hurt. I teared up. I was angry. What's the point?, I thought for a while, even. Is it naive to think that the progress we make with people in this setting matters? Is it helpful if they end up here one day, gone the text. I remember this proverbial question from the first day I entered a nursing home as a student, and my CI told me confidently, of course it does. Anything that betters someone's quality of life is meaningful. I believe that, but it's hard not to feel bitter sometimes at the world. It's hard not to feel angry about the loss. I feel good in my heart about always doing what I felt was right in this case. But I still walked past that room today, glanced in at its emptiness, now sterilized and devoid of any life at all, and that Friday afternoon as I walked out the door following that last session is going to stick with me for the rest of my life.
I'll miss them.
Sunday, January 28, 2018
Poor Planning and a Little Regret
I'm packing for our move on the 15th and I always go through this period of time where I get really nostalgic because I start packing the books and then I get to the old memorabilia and journals...next thing I know it's been an hour and I'm still on the floor reading and I have been totally oblivious to what has gone on in the past hour. Well, that's me today. I just finished reading my old journals from before my big move to Atlanta and wiping a few tears and feeling a large amount of gratitude for where I am now and where I've come from. I have several journals; I'm a big fan of writing and it's always been how I've vented over the years. I have one from early 2008 to 2009, followed by my longest kept one - 2009 through 2015, chronicling a great deal of my teenage years, from my first big crush, relationship, family issues, a short period of living with my best friend in high school, and the ups and downs of my life through those years. A lot of it I shake my head at and think, "I was a typical shallow/silly teenager" but some of it really hits my heart hard. Reading about the ups and downs is hard - seeing all the ways in which you could have avoided those by recognizing the signs of something bad is hard too. I read through years worth of praying out my frustrations, being naive enough to think I was being supportive of someone who just took advantage of me, being depressed when things were going bad, and being overly hopeful and giddy when things were going good. A roller coaster. I read an entry from early 2014 today - shortly before my life fell apart and spiraled into one of the top 2 hardest years of my life. It was an earnest letter to the person I had loved for years - practice for the conversation where I had to buck up and finally admit that things weren't working and weren't ever going to work. They weren't going to get better by covering them up with fresh apologies and temporary best behavior. They called out the glaring lack of effort, the skewed priorities, the taking advantage of me, despite multiple opportunities to do the opposite - one of the big times in my life where I was truly honest with myself. And while it always hurts to admit things like that to yourself, it's good for growth, isn't it? I think so. A lot of things in my past still haunt me. I don't think they ever go away. Spoiler: I'm even going to counseling to try and talk a lot of it out. It's been apparent to me this year just how much my past has effected the way I handle stressful situations and how I could handle them so much better. It's become apparent how I run and ditch hard things when I sense any "danger". How I lock away my feelings and push everyone away and try and bear burdens on my own. These are hard realizations to make. I want so badly to be the best version of myself I can be, and for years, I've drowned myself in work and more work and told myself that staying busy is the answer to the hard and hurtful things in my life, whether that's relationships, or dad issues, or hurt and frustration over my chronic illness or the feeling of fighting battles alone. That it's the only way to truly feel like I've done something fulfilling and meaningful, even though I know that isn't true. It's resulted in me putting unreasonable and very stressful standards on myself and those around me. It's all part of life to recognize (and hopefully try to fix) these things I suppose...
Anyways, that's all an incredibly long intro to say, I left my Diabetes educator's office on Friday crying big a** alligator tears and almost had to call out of work due to what I think was the closest thing I've ever had to an anxiety attack on Friday. I felt legitimately upset and unstable that day, and the weight of the world felt like a goddamn wrecking ball that someone had just dropped on my head. I don't get like that very often - I'm usually a pretty calm, easy going person. I describe myself as
"the most Type B Type A you'll ever meet" simply because I am very particular about the key things in my life - work, financial stability, my home, and my relationships - but everything else, as far as hobbies, day to day life, traveling, adventure, actually doing things - is usually pretty laid back. I like to mix spontaneity with organization and "wing it" a little more than I should mostly because I get tired and try to juggle too many things at once. One of those things I'm really Type A about is my Diabetes though. For those of you that don't know, I had started working for a company in August who ended up having the building I was working out of bought out by another rehab company. I switched health insurance in a relative rush, and I did the little online survey that recommends a plan based on your health conditions, doctors, and medications. And... I chose that plan. Which seemed totally fine; I had no issues, until I went to the pharmacy last week to buy my insulin and expected the $0 or $25 copay I had been paying.
And heard a sentence I have come to dread so much over the years. "It's $330 for the one insulin, $400 for the other, and $130 for the test strips... do you have a new insurance card?" And found out that all of my insulin will be full price until I meet my pretty high deductible. You can imagine how that felt after spending... let's count... 7 years now stressing about where my insulin is going to come from, and then graduating, feeling like I had made it to the promise land, paying NO copay for my insulin later last year, and then announcing to the whole world that I was going to make the switch to an insulin pump a week ago.
Spoiler: It felt like failure, and it felt like bitter disappoint, disenchantment with life, and cold, hard worry and exhaustion. It felt like I was reliving the 7 years of my life where I struggled every day just knowing that the next month I might not be able to pick up my prescription. It felt like... almost a kind of PTSD, to be frank. Something about the price of insulin legit flips this switch in me that automatically trigger tears and irrational panic every.single.time. Just thinking about everything I've had to go through to crunch things and make ends meet and just make sure that I could baseline survive all these years while putting myself through school. The past 3.5 years especially. They've been... legitimate hell, you know? I've had to use all of my resources to try and get insulin, and it hasn't been easy. And to be honest with you, sometimes it isn't even the going to great lengths to get insulin that is the hard part... it's just the uncertainty. Of not knowing how you're going to pull it off next. There's no stability and comfort in that. There's nothing that feels good about counting the insulin in your fridge to see how long it's going to last you. The uncertainty wears down on you and it makes you feel like everything in the world is against you and no matter how far you come on top, you're always 2 floors down from everyone else because they're healthy and you're stuck with a pancreas that doesn't work and there are some things you can't do because you're sick or that are harder and you can't do anything at all without a drug that is made ungodly expensive by insurance companies and you have to work for the rest of your life to pay for those... sorry. That was a tangent.
But anyways - it hurt. It hurt really bad. And how did I get into this situation? Quite frankly - poor planning. I shouldn't have trusted a website that recommended insurance and said it covered my meds. I should have read the fine print - that it would come out of my deductible with this new company - I only saw the part where I'd pay 20%. I have never had legit health insurance before last August, so a lot of these things I didn't even know to look for. But now I'm here, and I've begged to change my insurance plan, but the only lifeline I have to even give me a sliver of hope at that happening is the appeal form my company is mailing to see if they'll deign to allow me to change partway through the year outside of the enrollment period. Friday I went to an appointment in regards to the insulin pump only a week ago that was supposed to be exciting and thrilling and hopeful - and instead I ran 30 minutes late because it was early and I stayed up too late, then sat in an office with a very understanding woman who wrote down the one per day readings on my meter because I'm still not out of this rut of hating my diabetes and feeling burned out in ways I can't explain and re-remembering how bad of a diabetic I am right now even though last year I promised I'd get better and then looking at the pumps I liked and beginning to have my eyes fill with tears as I tell her, "I don't think I'm going to be able to get it now... not with this insurance." It felt overwhelming because I legitimately think I need the continual glucose monitor and the pump because I am so unmotivated right now and I really want those things to help me get back on track. I want the constant readings to remind me of my sugar. I want the tighter control.
I was overdramatic, but it was that switch again, you see. The one that just gets triggered with the stress of bad insurance and a world of treatments that I can't afford even with a technically "good paying" job now. I still feel like I ended up on the bottom this year. That I'm not any better off than I was last year. And that's hard. Even if it was my fault - due to bad planning and misinformation and not seeking enough information - it's hard.
So I left the office and got in my car and I cried. I asked what was wrong with me. I cursed the forces that be for giving me a disease that has tested every fiber of my being... from physically, to emotionally. Especially emotionally... a disease that I have come to despise so much that I can hardly bring myself to put in the effort to treat it, but a disease that will kill me if I don't. I don't normally get like this, but Friday - I hated it all so much I could hardly stand it. I pulled into the parking lot at work and grabbed a scrunched up napkin from the side of the door to wipe my face and took a deep breath. "You've got to pull it together," I whispered to myself. "You do it because you have to. Even when you don't want to."
And I did. I wiped off my face a final time, put some makeup on my nose that was red from the tears, I swallowed my tears, and I got my ass out of the car and pasted a smile on my face and I drowned myself in the problems of others for 9 hours and then I went home and I didn't cry again.
Because this is the ugly life of having a chronic illness. And the stakes of just a little bad planning are big ones.
Anyways, that's all an incredibly long intro to say, I left my Diabetes educator's office on Friday crying big a** alligator tears and almost had to call out of work due to what I think was the closest thing I've ever had to an anxiety attack on Friday. I felt legitimately upset and unstable that day, and the weight of the world felt like a goddamn wrecking ball that someone had just dropped on my head. I don't get like that very often - I'm usually a pretty calm, easy going person. I describe myself as
"the most Type B Type A you'll ever meet" simply because I am very particular about the key things in my life - work, financial stability, my home, and my relationships - but everything else, as far as hobbies, day to day life, traveling, adventure, actually doing things - is usually pretty laid back. I like to mix spontaneity with organization and "wing it" a little more than I should mostly because I get tired and try to juggle too many things at once. One of those things I'm really Type A about is my Diabetes though. For those of you that don't know, I had started working for a company in August who ended up having the building I was working out of bought out by another rehab company. I switched health insurance in a relative rush, and I did the little online survey that recommends a plan based on your health conditions, doctors, and medications. And... I chose that plan. Which seemed totally fine; I had no issues, until I went to the pharmacy last week to buy my insulin and expected the $0 or $25 copay I had been paying.
And heard a sentence I have come to dread so much over the years. "It's $330 for the one insulin, $400 for the other, and $130 for the test strips... do you have a new insurance card?" And found out that all of my insulin will be full price until I meet my pretty high deductible. You can imagine how that felt after spending... let's count... 7 years now stressing about where my insulin is going to come from, and then graduating, feeling like I had made it to the promise land, paying NO copay for my insulin later last year, and then announcing to the whole world that I was going to make the switch to an insulin pump a week ago.
Spoiler: It felt like failure, and it felt like bitter disappoint, disenchantment with life, and cold, hard worry and exhaustion. It felt like I was reliving the 7 years of my life where I struggled every day just knowing that the next month I might not be able to pick up my prescription. It felt like... almost a kind of PTSD, to be frank. Something about the price of insulin legit flips this switch in me that automatically trigger tears and irrational panic every.single.time. Just thinking about everything I've had to go through to crunch things and make ends meet and just make sure that I could baseline survive all these years while putting myself through school. The past 3.5 years especially. They've been... legitimate hell, you know? I've had to use all of my resources to try and get insulin, and it hasn't been easy. And to be honest with you, sometimes it isn't even the going to great lengths to get insulin that is the hard part... it's just the uncertainty. Of not knowing how you're going to pull it off next. There's no stability and comfort in that. There's nothing that feels good about counting the insulin in your fridge to see how long it's going to last you. The uncertainty wears down on you and it makes you feel like everything in the world is against you and no matter how far you come on top, you're always 2 floors down from everyone else because they're healthy and you're stuck with a pancreas that doesn't work and there are some things you can't do because you're sick or that are harder and you can't do anything at all without a drug that is made ungodly expensive by insurance companies and you have to work for the rest of your life to pay for those... sorry. That was a tangent.
But anyways - it hurt. It hurt really bad. And how did I get into this situation? Quite frankly - poor planning. I shouldn't have trusted a website that recommended insurance and said it covered my meds. I should have read the fine print - that it would come out of my deductible with this new company - I only saw the part where I'd pay 20%. I have never had legit health insurance before last August, so a lot of these things I didn't even know to look for. But now I'm here, and I've begged to change my insurance plan, but the only lifeline I have to even give me a sliver of hope at that happening is the appeal form my company is mailing to see if they'll deign to allow me to change partway through the year outside of the enrollment period. Friday I went to an appointment in regards to the insulin pump only a week ago that was supposed to be exciting and thrilling and hopeful - and instead I ran 30 minutes late because it was early and I stayed up too late, then sat in an office with a very understanding woman who wrote down the one per day readings on my meter because I'm still not out of this rut of hating my diabetes and feeling burned out in ways I can't explain and re-remembering how bad of a diabetic I am right now even though last year I promised I'd get better and then looking at the pumps I liked and beginning to have my eyes fill with tears as I tell her, "I don't think I'm going to be able to get it now... not with this insurance." It felt overwhelming because I legitimately think I need the continual glucose monitor and the pump because I am so unmotivated right now and I really want those things to help me get back on track. I want the constant readings to remind me of my sugar. I want the tighter control.
I was overdramatic, but it was that switch again, you see. The one that just gets triggered with the stress of bad insurance and a world of treatments that I can't afford even with a technically "good paying" job now. I still feel like I ended up on the bottom this year. That I'm not any better off than I was last year. And that's hard. Even if it was my fault - due to bad planning and misinformation and not seeking enough information - it's hard.
So I left the office and got in my car and I cried. I asked what was wrong with me. I cursed the forces that be for giving me a disease that has tested every fiber of my being... from physically, to emotionally. Especially emotionally... a disease that I have come to despise so much that I can hardly bring myself to put in the effort to treat it, but a disease that will kill me if I don't. I don't normally get like this, but Friday - I hated it all so much I could hardly stand it. I pulled into the parking lot at work and grabbed a scrunched up napkin from the side of the door to wipe my face and took a deep breath. "You've got to pull it together," I whispered to myself. "You do it because you have to. Even when you don't want to."
And I did. I wiped off my face a final time, put some makeup on my nose that was red from the tears, I swallowed my tears, and I got my ass out of the car and pasted a smile on my face and I drowned myself in the problems of others for 9 hours and then I went home and I didn't cry again.
Because this is the ugly life of having a chronic illness. And the stakes of just a little bad planning are big ones.
Sunday, January 7, 2018
2018
2018 seemed like an incredibly long way away when I was a kid. I remember drives to gymnastics practice, talking about how the Aquifer was going to run out of water in 2016, or how all the cars would be self driving, or how Blu-Ray was the way of the future. Life seemed like such a mountain stretching before me, made up of unknowns and things so far I couldn't even imagine them. Even physical therapy school was a world away, not even a thought yet in my head, and even when it was, reading through the requirements for school made it seem impossible. Unlikely. Daunting. Tiring. I get tired just thinking of it right now, because having to go back through it would seem nearly impossible.
And yet here we are. Those afternoons in the gym practicing balance beam are long gone. My aqua blue room and days spent with my friends playing outdoors are distant memories. I feel a wave of sadness thinking about this - my childhood, all of the things I cherished as a young girl, have expired their time in my life, and I only have journals and some old photos to look back on and remember those days. One day, I'm going to wake up and those photos are going to look even older than they do now. I'll be far "older" than I am now. Life seems like an incredibly brief but also a long time, even at 24.
I used to sit and make a lot of new years resolutions. Some I've long since met - others recurring over the years; listen better, don't cut people off when they're talking, think more before I speak (see a pattern here, lol), learn a new language. For a couple years in college, I ditched my new years resolutions and, instead, used to write a list of bad or sad things on a piece of paper. When the clock struck midnight, I'd throw my list into the fire. Literally out with the bad, in with the new and unknown. I used to think I had my whole life figured out in undergrad. I was going to marry my first boyfriend, maybe settle down in Macon if Mercer started a PT program there, buy a house in the country, where I thought I wanted to live. I hated dancing. Wanted to do outpatient ortho physical therapy. Life does this funny thing of slowly tossing those premade plans away. There was no PT program in Macon. Why did I want to stay in Macon anyways? Things with the BF went aside in a magnificently horrendous way. I moved to Atlanta. I don't even like the country, I like the city. By the way, Macon sucks (God bless it, I love it, but it does). I decided I loved Geriatrics. I began dancing and met the love of my life there. Things change slowly, but massively. And the world keeps spinning on and you find yourself thinking of how all those little puzzle pieces came together years later.
Even now, those puzzle pieces are still shifting every day. Things are in play that perhaps I'm not even aware of. Ten years from now, I'll giggle at how "old" 24 year old me thought I felt. I'll have made some new friends, lost a bunch, still be friends with a few of my closest. Heck, maybe I'll even have a kid of my own, but independent, highly career-driven, progressive, 24 year old me staunchly says no at this point to kids or even a dog. Life will change me little by little. Maybe hone is a better word? It's still me - I'm still that same 15 year old girl that sat in her aqua blue room, looking up at her glow in the dark stars at night, dreaming dreams of the future and the man I'd someday marry and how great my career would be and how it seemed like my highschool friends would be my friends forever and how Viva La Vida by Coldplay was definitely the best album ever (dang, 15 year old me was dumb). But I'm also not. 15 year old me never would have pictured life like it is now. She thought she had faced a lot of hardships, and she had, but she didn't know how many more were left to come. Life has a lot of challenges as you get older, and all the things you thought would be so great are marred by bigger responsibilities, risks, and failures. But it's enriching all the same.
I didn't stop to make a new years resolution list this year. But I'm constantly thinking of the ways in which I'd like to be better, and this year, as I'm sure is the same for everyone, was a big year of painful challenges, lessons, changes, and honing the person that I am. I, like probably everyone, am not exempt from wishing that I could tell past me so many of the lessons I learned the hard way. But, future me does have the advantage of already having learned a lot of these hard lessons. This year, as far as I know, does not portend to be one of great and massive changes. Hubby and I are moving into a pretty incredible new apartment, which is definitely the highlight thus far - it has a viw of the skyline to die for, and a view of Jackson Street Bridge, where we got engaged. I remember that night (naturally!) so clearly. I remember Kris looking at those very same apartments we are now moving into and saying that he dreamed of living there one day. Life is pretty cool when it surprises you with fulfillment like that. Other than that though... no major changes expected. I like my job, I hope to still be working there and thriving this time next year. I still adore my side business of face painting and balloons, and hope to still do that. I hope I change, though. I hope I change for the better. I hope I keep striving to dig for new information to make myself a better clinician. I hope to practice more German. Make my finance goals. Keep paying off big dents in my loans. I hope I can still keep practicing to be a better listener. To be a more compassionate person and stop blaming my hardship-hardened heart on my difficulties with empathizing. I hope I'm a better diabetic. I hope I actually use that elliptical at those new apartments. Don't get me wrong. I'm at a place in life where I am confident, proud, and happy with who I am. I've built a lot for 24. I'm financially stable. I have the health insurance I so desperately needed in my teens. I've run a business for years, learned some powerful lessons on communication, and found a church I adore so much that I am actually sad whenever I miss a Sunday there. I've handled communicating some major grievances with confidence to people, lost a friend or two, but felt at peace with how I chose to handle things. I've learned a lot about marriage and sticking things through and how to handle conflict in ways that are better than the ways I previously thought were good. I've learned to be a little less like Jonah in the bible, and remind myself that sometimes, my fears and frustrations aren't always coming from an outside source. They originate from within. And it takes a lot of work to untangle and resolve what is within. At work I've learned, even as a new grad, that I know more than I think. I've handled conflict successfully at work and learned to work as part of a team. I've learned lessons about treating patients and every day makes me better. I've learned that 20 years of physical therapy experience is not always better than 1. I think that 15 year old me would be very proud of my life now.
But still... that's the thing that makes life beautiful, isn't it? Never falling into complacency. Always striving for more. I know that drives us to lead healthier, more fulfilling lives. And that's what I aim to keep doing in 2018. Always striving for better.
And yet here we are. Those afternoons in the gym practicing balance beam are long gone. My aqua blue room and days spent with my friends playing outdoors are distant memories. I feel a wave of sadness thinking about this - my childhood, all of the things I cherished as a young girl, have expired their time in my life, and I only have journals and some old photos to look back on and remember those days. One day, I'm going to wake up and those photos are going to look even older than they do now. I'll be far "older" than I am now. Life seems like an incredibly brief but also a long time, even at 24.
I used to sit and make a lot of new years resolutions. Some I've long since met - others recurring over the years; listen better, don't cut people off when they're talking, think more before I speak (see a pattern here, lol), learn a new language. For a couple years in college, I ditched my new years resolutions and, instead, used to write a list of bad or sad things on a piece of paper. When the clock struck midnight, I'd throw my list into the fire. Literally out with the bad, in with the new and unknown. I used to think I had my whole life figured out in undergrad. I was going to marry my first boyfriend, maybe settle down in Macon if Mercer started a PT program there, buy a house in the country, where I thought I wanted to live. I hated dancing. Wanted to do outpatient ortho physical therapy. Life does this funny thing of slowly tossing those premade plans away. There was no PT program in Macon. Why did I want to stay in Macon anyways? Things with the BF went aside in a magnificently horrendous way. I moved to Atlanta. I don't even like the country, I like the city. By the way, Macon sucks (God bless it, I love it, but it does). I decided I loved Geriatrics. I began dancing and met the love of my life there. Things change slowly, but massively. And the world keeps spinning on and you find yourself thinking of how all those little puzzle pieces came together years later.
Even now, those puzzle pieces are still shifting every day. Things are in play that perhaps I'm not even aware of. Ten years from now, I'll giggle at how "old" 24 year old me thought I felt. I'll have made some new friends, lost a bunch, still be friends with a few of my closest. Heck, maybe I'll even have a kid of my own, but independent, highly career-driven, progressive, 24 year old me staunchly says no at this point to kids or even a dog. Life will change me little by little. Maybe hone is a better word? It's still me - I'm still that same 15 year old girl that sat in her aqua blue room, looking up at her glow in the dark stars at night, dreaming dreams of the future and the man I'd someday marry and how great my career would be and how it seemed like my highschool friends would be my friends forever and how Viva La Vida by Coldplay was definitely the best album ever (dang, 15 year old me was dumb). But I'm also not. 15 year old me never would have pictured life like it is now. She thought she had faced a lot of hardships, and she had, but she didn't know how many more were left to come. Life has a lot of challenges as you get older, and all the things you thought would be so great are marred by bigger responsibilities, risks, and failures. But it's enriching all the same.
I didn't stop to make a new years resolution list this year. But I'm constantly thinking of the ways in which I'd like to be better, and this year, as I'm sure is the same for everyone, was a big year of painful challenges, lessons, changes, and honing the person that I am. I, like probably everyone, am not exempt from wishing that I could tell past me so many of the lessons I learned the hard way. But, future me does have the advantage of already having learned a lot of these hard lessons. This year, as far as I know, does not portend to be one of great and massive changes. Hubby and I are moving into a pretty incredible new apartment, which is definitely the highlight thus far - it has a viw of the skyline to die for, and a view of Jackson Street Bridge, where we got engaged. I remember that night (naturally!) so clearly. I remember Kris looking at those very same apartments we are now moving into and saying that he dreamed of living there one day. Life is pretty cool when it surprises you with fulfillment like that. Other than that though... no major changes expected. I like my job, I hope to still be working there and thriving this time next year. I still adore my side business of face painting and balloons, and hope to still do that. I hope I change, though. I hope I change for the better. I hope I keep striving to dig for new information to make myself a better clinician. I hope to practice more German. Make my finance goals. Keep paying off big dents in my loans. I hope I can still keep practicing to be a better listener. To be a more compassionate person and stop blaming my hardship-hardened heart on my difficulties with empathizing. I hope I'm a better diabetic. I hope I actually use that elliptical at those new apartments. Don't get me wrong. I'm at a place in life where I am confident, proud, and happy with who I am. I've built a lot for 24. I'm financially stable. I have the health insurance I so desperately needed in my teens. I've run a business for years, learned some powerful lessons on communication, and found a church I adore so much that I am actually sad whenever I miss a Sunday there. I've handled communicating some major grievances with confidence to people, lost a friend or two, but felt at peace with how I chose to handle things. I've learned a lot about marriage and sticking things through and how to handle conflict in ways that are better than the ways I previously thought were good. I've learned to be a little less like Jonah in the bible, and remind myself that sometimes, my fears and frustrations aren't always coming from an outside source. They originate from within. And it takes a lot of work to untangle and resolve what is within. At work I've learned, even as a new grad, that I know more than I think. I've handled conflict successfully at work and learned to work as part of a team. I've learned lessons about treating patients and every day makes me better. I've learned that 20 years of physical therapy experience is not always better than 1. I think that 15 year old me would be very proud of my life now.
But still... that's the thing that makes life beautiful, isn't it? Never falling into complacency. Always striving for more. I know that drives us to lead healthier, more fulfilling lives. And that's what I aim to keep doing in 2018. Always striving for better.
Saturday, December 2, 2017
It's a season of thanks: especially for having healthcare.
I'm sitting in one of my favourite old haunts, Taste and See coffee shop in Macon. I can remember so clearly passing away the summer days here, writing about how much I didn't want to leave this place, sipping counter culture coffee before I ever knew what counter culture was, taking time to myself after the long days of teaching gymnastics. I close my eyes, and life passes in an instant. Here I am - school is behind me - this place is all memories and long ago times and a place to be a passerby only, never to stay. Life feels that way - it's passed in an instant. I work in a place where I encounter this a lot, and it's taught me to respect time, my 20's, all that life as a young working person has to offer. I'm tired from work - a different kind of tired. Not the kind of tired I was in school. There's a weight of responsibility on me, and growing pains as I learn full-on adulthood. It's trying to find work-life balance, not gawk at how much money goes to taxes, and weighing healthcare plans. It's making financial plans and trying to pay off student loans and leaving work at 7 or 8 o'clock sometimes. It's finding new friends as my old ones move on into their new lives. It's keeping old friendships alive. It's (still) trying to learn how to cook. It's a season of many new things - including finally having health insurance.
Everytime I go to the pharmacy now, it's hard for it to not feel like Christmas. The concept of going to a pharmacy and not having fear and the feeling of a pit of despair in my stomach is still new. I used to regard pharmacies with a mix of hate and dread - isn't that funny? But I mean it. I hated the place that was filled with a drug I couldn't dream of affording. I'd even look at nursing carts during my internship at the hospital - nurses would open drawers, and pens upon pens of Novolog would be inside of them. They'd draw some insulin from a pen and throw the rest away. That hurt. I've spent a lot of my life going without, and it sucked. It feels like a bad dream now, but it's not, and it was really just a bad learning experience about what falling through the cracks of the American healthcare system means. The reason I write on all this is because of the story that recently made headlines about the 26 year old who died because he came up $25 short for his GoFundMe for insulin. What a sick reality is that? The sad thing is, it happens every day. I rationed insulin for so long. I purposely ate lower carb things to avoid having to give so much insulin. I'd go a unit or 2 without if it meant making my insulin last longer. I'd go without Lantus for an extra 12 hours so that I could have an extra day or two worth of insulin a month. I'd pull the extra insulin out of my insulin pens with a syringe so I could have the extra 10 units. I used insulin that had been expired for 2 years. I begged people for it. You don't leave that and forget it. As long as I live, I will never forget what it was like to have something I needed to live so far out of my reach that just thinking about it made me a little teary eyed. It's part of the reason why I love where I work for so much. I work with a lot of underserved people that need help. Who need advocates - and I hope to spend my life continuously learning how to better serve these people. Because I couldn't have made it through years without health insurance and scraping by with enough insulin through the skin of my teeth, without help from a lot of kind individuals. I'll always count my blessing for that $0 or $25 copay, because I'm happy just to have an affordable copay. Healthcare is a privilege I fought for, but I don't think it should be that way. It should be within the reach of people like you and I, whether that means holding pharmaceutical companies accountable for actually making these drugs affordable, or simply recognizing that there is a big problem, and that we all have to do something to change it. Whatever the solution, it starts with awareness of the problem. This blog is just one small way of making my own voice heard.
Everytime I go to the pharmacy now, it's hard for it to not feel like Christmas. The concept of going to a pharmacy and not having fear and the feeling of a pit of despair in my stomach is still new. I used to regard pharmacies with a mix of hate and dread - isn't that funny? But I mean it. I hated the place that was filled with a drug I couldn't dream of affording. I'd even look at nursing carts during my internship at the hospital - nurses would open drawers, and pens upon pens of Novolog would be inside of them. They'd draw some insulin from a pen and throw the rest away. That hurt. I've spent a lot of my life going without, and it sucked. It feels like a bad dream now, but it's not, and it was really just a bad learning experience about what falling through the cracks of the American healthcare system means. The reason I write on all this is because of the story that recently made headlines about the 26 year old who died because he came up $25 short for his GoFundMe for insulin. What a sick reality is that? The sad thing is, it happens every day. I rationed insulin for so long. I purposely ate lower carb things to avoid having to give so much insulin. I'd go a unit or 2 without if it meant making my insulin last longer. I'd go without Lantus for an extra 12 hours so that I could have an extra day or two worth of insulin a month. I'd pull the extra insulin out of my insulin pens with a syringe so I could have the extra 10 units. I used insulin that had been expired for 2 years. I begged people for it. You don't leave that and forget it. As long as I live, I will never forget what it was like to have something I needed to live so far out of my reach that just thinking about it made me a little teary eyed. It's part of the reason why I love where I work for so much. I work with a lot of underserved people that need help. Who need advocates - and I hope to spend my life continuously learning how to better serve these people. Because I couldn't have made it through years without health insurance and scraping by with enough insulin through the skin of my teeth, without help from a lot of kind individuals. I'll always count my blessing for that $0 or $25 copay, because I'm happy just to have an affordable copay. Healthcare is a privilege I fought for, but I don't think it should be that way. It should be within the reach of people like you and I, whether that means holding pharmaceutical companies accountable for actually making these drugs affordable, or simply recognizing that there is a big problem, and that we all have to do something to change it. Whatever the solution, it starts with awareness of the problem. This blog is just one small way of making my own voice heard.
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