Chronic Illness - Burden, Curse, Gift? All of the Above?

Today's church sermon really stuck with me: 

"God's fire burns wet wood." 

Even if you're not religious, I think these are truly beautiful words. I think at my own life - and all the times I have felt just like that - like wet wood. Too broken for fixing. Too dejected to go on. To beat down to think good things would come out of the mess that is life, sometimes. How many times in my life do I think those words would have been applicable! I wish someone had told me them long ago.
The mysteries in life, sometimes, seem too great to wonder. Things fall into place that you only see when the big picture comes together, but all the small pieces fitting into place feel hardly noteworthy, scarcely noticeable at times. And how easy it is to feel broken down by our trials and tribulations.

This has certainly given me a lot to ponder over the last few hours. I think often of the work that I do, why I felt called to healthcare, and how I find my place in the world where I feel that I am making a difference and doing something important. There comes a time in our lives where I think we start to wonder when all of the questioning, thoughts, and ideas swirling in nonformed patterns in our head come together into something tangible with which we carry on our lives. 

In this present moment, though, I am grateful for all of the lessons that have been taught to me in 25 years. There was a time 5 years ago where I sat at my kitchen sink, unsure of where my life was going, unsure of whether I'd make it into school and where I was supposed to go from there and what I was supposed to do with the mound of heartbreak and other misfortune I carried at the time. Something I always marvel on in my life is how I feel I have always been carried through those difficult times - in spite of so many obstacles, questions, and hurdles and hurdle, there was always been some way in which to trial through and press onwards. And furthermore, I always seem to possess an almost inextinguishable fire in which to push through these things. As much as I find my own trials difficult, as I'm sure we can all call to mind events and circumstances in our lives that have evoked this same feeling in us, I love that my own difficulties have changed my heart in many ways that I feel, are changes for the better. In little ways - thinking twice about what one of my own patients is going through. Considering the emotional and mental ramifications of illness, and the amount of strength and capacity for perseverance that a person must develop or prepossess in order to overcome it. The lessons on compassion it has taught me. The lessons in humility - feeling that the very thing that makes me human, that the body that I rely on - has failed me, and the disappointment and fear that causes you to feel. Being previously health but then suddenly needing something that is oftentimes difficult to get, to keep you alive. The humility of having to rely on the kindness of others or seemingly happenstance but remarkable provisions to help you get through on a month to month basis. I suppose the lesson is, that even in our darkest moments, we are undergoing changes within ourselves or learning things that get us closer to who we are supposed to be, or equip us to help or connect with someone else somewhere along their own journey. 

I was working with a patient last week, who is very young for being in a nursing home, and whom I've worked with earlier that year during another visit. This was my first day on this particular visit working with them - other therapists had worked with them the past month, with little progress having been made. No walking. No standing. Not even being able to get out of bed without a lift. We were in the parallel bars, and I was listening to them crying, very obviously anxious, about trying to walk. They had the strength - there is no technical reason why they shouldn't be able to - but something was holding them back. I wouldn't say this to every patient, nor would I seek to interject my own experiences on them to make it seem like I am lessening their own difficulties - but having known this patient pretty well from before, I looked at them, and I asked them, "I know you're scared, but what is the alternative?"

They looked at me. "Being in a wheelchair..."
"Right," I said. "When I was diagnosed with Type 1 Diabetes, needles were my biggest fear. I cried as a teenager every time I had to get shots or lab work. I couldn't have imagined anything worse than being diagnosed with an illness that required me to confront my biggest fear daily. And yet I was. And I was angry. But more than that, I was scared. Terrified. I didn't think I could possibly do it.
But then someone else close to me asked me, "what is the alternative?" And the only answer I had for that was dying. Because that was the only alternative, if I didn't find a way to get stronger and overcome my fear. And so I learned, little by little, and I taught myself, to overcome this. No matter how hard it was - I learned to be stronger. 
I know you're afraid, but overcoming your fear is so much greater than living the alternative. I know that was the case for me, and I promise you that that will be the case for you, if you try. So please try. I know you can do this."

I would like to say the patient just got out of their wheelchair and could magically walk perfectly without help after that, but that wasn't the case. But they did stand. And they did walk. Albeit it wasn't pretty, but they did it. Twice. And that moment really touched me. In that moment, I did feel that my own struggles with anxiety, fear, pain, and the loneliness and isolation of illness equipped me to truly help somebody. And the next day I had them walking further, getting in and out of bed on their own, standing up from a mat - and that was such a good feeling. To have overcome something to be able to lend my own experience to help somebody else. 

God's fire burns wet wood. Things we don't understand - the bad, the scary, the painful, the tragic - these things, while not good, can in miraculous ways be used for good. And we, in the midst of feeling broken and run down - we can rediscover the sparks that keep us going. We can find deeper strength. We can become people that spread goodness. 
This is a reminder I believe we all can use, from time to time. I know I can.

Saying, "Things Will Be Fine" is a Luxury Not All Of Us Can Afford.

I was very smug in highschool about my political beliefs. Free market with limited government intervention. This had to be the missing piece in our broken country. Medicaid was a drain on our system. More competition was the answer to sky high medical prices. Obamacare was the worst possible thing that could happen. How could the government force us to buy healthcare? I couldn't imagine anything more wrong.

You would not have been able to change my mind. I could argue until I turned blue in the face, and I practically did, on many occasions. And there's a correlation to this: I didn't have a chronic illness yet. I'll be the first to say that I don't think that that means all of my ideas are right. But, having suffered with a very expensive illness for almost 8 years now, I feel that I've garnered enough insight to know what is and isn't helpful to people battling to pay for their medications day in and day out.

When I discovered that I had Type 1 Diabetes at age 17, the very system that I had lauded as a drain on our taxpayer dollars was the very system that saved my life. And I mean that, fully. My parents are divorced and my mother is self employed. We didn't have health insurance. When we were sick, we stuck it out or went to the urgent care or the health department. When I was hospitalized, the bill was $20,000 for a 5 day stay. And when I was told I couldn't leave the hospital until my parents bought my meds, I told the nurse, "Oh, well I don't have health insurance, but I'm sure my parents can just buy them."

I'll never forget the words she told me: "I don't think you realize how expensive they are."

And she was right: I didn't. $500 for a one month supply of my medication. And that's significantly cheaper than what it is now. I would not have been able to afford my hospital stay or medication without Medicaid. Before Obamacare came into effect, most private insurance charged 3 times as much for someone like me, and didn't cover any of the medications, including insulin, I needed to live. I truly do not know what I would have done.

Regardless, I stuck it out for the long haul. I kept insisting and insisting that Obamacare was wrong. Competition was key. I couldn't villianize big pharma all that much - it was their product, and they had a right to charge what they wanted, no? Year, after year. I stuck to this belief. But this year, I feel like I simply can't cling to these beliefs anymore. Politicians all sell us overinflated promises to get votes, sure. But, as a consumer of drugs on the healthcare market, I've been in almost any position you can be in now - Medicaid holder, underinsured, no insurance, high deductible plan, gold and platinum level employer-sponsored health insurance; and, having taken all of these experiences into consideration, I find it hard to cling to a system that places the dollar above the lives of people like myself, each and every day, even as they are crying out for help. I find it hard to justify a drug sold at $300 a vial when it was once sold for $1 by a man who refused to patent insulin because he wanted people everywhere to have access to it.

And furthermore... I'm tired. I'm tired and I'm frankly, really angry of people who have the luxury of throwing out their "I'm sure it's fine's" and advice used simply to find a means to justify the current problems that our healthcare system causes people who literally did nothing wrong except for losing in a poorly weighted game of genetic lottery. We do not all have the luxury of being able to have the faith to believe that things will be fine. We do not all have the luxury to believe that options will simply present themselves, or things will "eventually" work out. "Things will be fine" is a saying for the healthy. Those who are ill are not so lucky. Those who are ill without health insurance, doubly so. Because it's month to month, sometimes day to day, for these people. Saying "it will be fine" is not a solution. These people need fixes. Not excuses from others used to justify their not being able to afford to live well or live at all. And I say that having been there more times than you can ever imagine. Picture pouring your heart out to the world, humbling yourself and admitting that you struggle to afford a drug that most people have the luxury of natural producing as a hormone in their bodies themselves. Imagine the anxiety you feel month to month, worrying about what you'll do when the insulin runs out - worrying about what you'll do for the next three years without healthcare. As I did. And if you don’t know how that feels, please take a second to consider how lucky you are. Please take a second to realize how lucky you must be to even feel justified to entertain the thought that it’s okay for someone else to feel like this. And then imagine someone - more than just one person - comes along and says,

"Well you can just get insulin at Walmart."
"Have you checked GoodRx? Most drugs have coupons to offset the cost."
"All pharmaceutical companies have programs to help you afford your medications if you can't."
"Well if I needed a drug to live, I'd spend all my money on it because I have to. It really could be worse. You could go without some luxuries and maybe then you could afford your medications."
"Well (so and so) has no trouble getting insulin, so how can you?"
"Well it could be worse. If democrats had their way, we'd be paying for everyone's insulin! Imagine how much that would cost taxpayers!"

How would that make you feel? To have everything you feel, that you go through, disregarded because someone who knows nothing about your situation (and I guarantee you it's almost never diabetics saying these things) thinks their 5 minutes on Google and that time they got their antibiotics really cheap with a GoodRx coupon and that friend who told them drug companies have drug assistance programs makes them qualified to assume that you haven't already explored those options and that they possess some superior knowledge to you that makes you unqualified to be upset at your situation?
It's hurtful. To have everything you do criticized through a microscope and have people pick your choices apart and tell you how they think you could have done better and that somehow make it out that it's still your fault that medication is so expensive that it's unaffordable. You cannot imagine the anxiety that not being able to afford medication puts you through. Whether it's for a month, or for me, years. You don't know how it tests you as a human being. How it belittles your own self worth, or strikes fear deep within your heart. You don't know unless you've confronted that situation. But, as someone who has faced it, I can tell you that that's how it's like. So when I get emotional, for myself or others in a similar situation, I feel that it's my due right. I've been on this soapbox for years, but this is my life. I have watched people's lives be ruined because of unexpected health care expenses. I interact with my own patients daily and witness how a healthcare system designed to value the dollar over human lives makes people suffer. And how I have had my own life altered because of being thrust into a system that values the dollar over my quality of life, and my life itself. Over and over, I have seen flaws in my own beliefs regarding healthcare come to life. Including the hard truth that a free market system doesn't work when you hold someone's life in your hands. When you're selling a need, not simply a want. Free market works great for TV's. It works great for automobiles. It works great for cell phones. Want to know something it doesn't work great for? Insulin. Because drug companies have learned that it's more profitable to, instead of competing, collectively raise prices yearly - like they did just this month.What can I say about that? It doesn't matter whether insulin costs $40, or $300, a vial. It doesn't change how much I need it. Competition isn't working because the money isn't in the competition. Demand for life saving drugs is not effected by price. What is the incentive, therefore, to offer lower prices? There is none. So here I am: it's been 8 years since high school, and 11 years since I was a high school freshman, and almost 8 years with Diabetes. And I no longer believe that high school me was right. What I believe is that people should not suffer so greatly because of human greed. What I believe is that money is not more important than people. And I think that this is a simple but powerful stance to take, regardless of party affiliations or political beliefs.

So I ask you: How long will people with health conditions such as Diabetes continue to suffer? How long can you ignore people who are rationing their insulin and dying because of $1200-$1500/month insulin costs? How many excuses will you make to tell yourself that's okay? How many times will you brush those concerns off, assuming these people just haven't tried hard enough or missed something along the line that will keep them from struggling month to month, to tell yourself it's their fault, not this broken health care system? I implore you to remember that, regardless of your political belief, money is a man-made construct. Human lives cannot be valued in money. But some in the health care industry are clearly putting prices on our lives. I implore you to look inside of yourself and ask why you think those people who control the drug industry deserve your excuses while the people the market to suffer. And continuously, I ask you to raise your voice. I've seen awareness over insulin prices increase dramatically this year, and it's only picking up momentum. This issue is not going away. Us diabetics cannot afford to let it go away. I may have good health insurance with a low deductible and copay this year, but somewhere out there, there's a 20-something struggling to get insulin month to month just as I once was. I raise my voice not just for me, but for them. All it takes is a turn of the dice to fall back into a situation like that. It shouldn't be that way.

Let's change it.

"You Have Diabetes? Oh... I'm sorry."

Here's a fact that might make you laugh:

I'm still quite afraid of needles. 

It's flu season, and I work at a nursing home, so they encourage we get the flu shot a. to protect our patients and b. to protect ourselves from bugs that patients tend to get this time of year. And of course, health care professionals always recommend us lucky immunocompromised patients get it, because, you know. Poorly-functioning T-cells, and the like.

I was lamenting about this to the nurse who administered it, having cornered me in the office as I was searching for a patient chart and asking me if I was there to get the shot. I laughed to her as I rolled up my sleeve, methodically tapping my foot and staring at the wall, intentionally trying to distract myself. "It's sad I get nervous for these," I said. "Seeing as I give shots 6 times a day or so." 

"You have Diabetes?" She asked. "Type 1," I nodded.

"Oh, man." "I'm sorry."

I never really know what to say to people who tell me they're sorry that I have a disease out of my control. It's such a human reaction, isn't it? To sympathize. I often don't know what to say to patients myself when I see how they're suffering with particularly difficult health conditions. "I'm sorry" is our (perfectly normal and understandable and okay) attempt at empathy. On the receiving end, though, it's hard to process that, sometimes. Which is why I try with my patients to tell them that I'm there to help them function as their best selves despite whatever condition(s) might be in their chart. Back to the fact that we are more than our diagnoses.

I suppose, in my case, it's a hard thing for me to reply to because I didn't...do anything to cause this. It just happened to me, and so it feels more like a divinely intended occurrence or random turn of fate. And yes, I've spent more than my fair share of time being angry over my diagnosis. Feeling sorry for myself. Wondering why I was the one who got it out of the other statistically lucky ones. There's no answer to that question, of course. You don't get to choose. There's many things you have control of in your life - but this was never one of them. I consider it my proverbial cross to bear, in a way, one that I've learned helps me connect with people in difficult times and given me a depth to my life that has humbled me and shown me the fearful feeling of my own fragility and morbidity. So, partly, me not knowing how to reply is because I've already been through the mental leg work of lamenting my loss of former health - coming out on the other end of that, and also reshaping my identity around this disease I call my own.

It never becomes something you're "used" to, I think, and I always try to make that distinction when people tell me that injecting needles each day must be horrible but that I must be used to it by now. I'm never used to it - it will always be a deviation from the normal life I grew up with. Accustomed, yes. Adjusted, yes. Come to terms with, yes. It's a battle I fight daily, and I'm okay with that now. Because I've come out on the other end of that difficult time, accepted it, and become (what I feel) is vastly stronger for it.

Of course, my viewpoints on the acceptance of illness and hardship might be way different than yours -- and that's okay, too. Maybe, "I'm sorry", is just what you need to hear. I know I did, at one point. Especially early on. And sometimes, when I'm going through a particularly tough time, it's what I need to hear, still. This is simply how I feel when people say that to me, which often happens when I tell new people about my condition.

So I just shrug. "No need to be sorry," I say. "It's just how it happens."

Digging Into Lilly's New Patient Assistance Program: Helpful or Another Bandaid?

There are a lot of people who would say that what's happened to me shouldn't be happening. Or couldn't be happening. How can you have so few options for insulin? With patient assistance programs, coupons, copay cards, prescription discount cards, goodRx, Walmart - there's an option out there for me. People that work in pharmacy swear by it. Right?

The point of me being vocal about my journey isn't for you to judge me for how I've gone about surviving. I do understand that there's different ways to handle what has happened to me. My story is my own, though. This is what I've done to live. And the point of me being vocal is to point out the immense flaws in our system. I want to ask the deeper questions of why 3 drug companies raise prices on insulin yearly in conjunction with each other instead of being competitive and making sure that we don't need coupons and programs in the first place to afford our medication. I want to know why they blame rising costs on "research" but then publicly defame researchers searching for affordable cures and laud expensive, technology-driven systems that will keep diabetics coming back to buy more. I want to know why they claim generics are "too hard to make". I want to know why politicians feel like people with pre-existing conditions deserve to not have healthcare coverage or die because they were tossed a bad hand at genetics, in many scenarios. And I want to know why people are so passive about it. So here's a story about how you can end up being someone like me, and how you can fall through the cracks of the system. 

I think that many of you know my story up to this point, and if you don't, much of it can be found on this blog. I was diagnosed at 17 years old, and two months away from moving out of state to college. My parents are divorced and my mother is self employed. We did not have health insurance back then and we were both relatively healthy individuals. I was very fit, not over 100 pounds until I was 15, and a competitive gymnast. We don't have a big family history of major health issues. My diagnosis took us all by surprise, and we were all very unprepared for the reality of life with a chronic illness. Including the $20000 hospital bill. This all slammed me like a train when I was being discharged from the hospital and told that until my medications were purchased, I wasn't allowed to leave.

"Oh." I told the nurse. "My dad will pay for it, I guess." 

I'll never forget what she said next. "Oh, honey," she said, shaking her head. 

"I don't think you realize how expensive this medicine is." 

And she was right. I didn't. Thankfully, though, I did qualify for Medicaid due to my condition and my age. Medicaid covered my bill, pediatric endocrinologists agreed to see me under my health plan, and my insulin was covered without a copay each month. Was it ironic that I spent my life in high school denouncing programs such as Medicaid only to come to have my life rely on it? Yes. But working in healthcare, as well as having a disease of my own, I've certainly developed many new ideals and opinions when it comes to healthcare since then. My doctor prepared me for as long as I was able to keep Medicaid and see them. Until I was 21, I stockpiled insulin and I saved as much as I could. I knew the day was coming, and I wouldn't graduate college until 23, and start working until almost 24. How would I survive until then? I thankfully did - I worked, owning my own business, and I stockpiled more, and I found people - strangers, friends - who were able to give me what they had. In undergrad, I had to lie about my insurance so that I could still get Florida Medicaid as I was required to have health care at school. My Florida Medicaid didn't cut it, but if this was discovered, I'd be forced to by the school insurance since I wasn't a resident and had to live on campus, disqualifying me from residency. The school insurance wouldn't cover my medications. I put my info in every year, saying it was Georgia Medicaid, counting on the fact that Medicaid didn't answer the phone. Nobody bothered to verify the kind of Medicaid I had. So I was able to live like that until I went to graduate school. I lived off of stockpiled insulin, some expired, and was able to keep my Medicaid until that first fall, when I turned 21. The school insurance was so expensive, I'd have had to take out another loan to pay for it. An expensive private one, at that. So to cut costs, I continued to submit my old Medicaid information. This worked until my last year of graduate school, when they found out. They made me get the school insurance, then.

It had been 2 years since I'd seen a doctor at that point. Since I hadn't had insurance, I qualified for patient assistance programs. But to qualify, my doctor had to give me a prescription and fill out an application. I had never had a primary care provider, since my parents didn't have insurance. I didn't have an endocrinologist as I wasn't a pediatric patient anymore. And seeing an endocrinologist - a specialist - involved seeing a primary care provider, paying out of pocket, and then paying additional out of pocket for a specialist who required me to also get labwork - over $500-700, when all was said and done. So I went without, and opted simply for self-managing and paying for spare insulin from other people. When I was forced to get the school insurance, I made an appointment- a 4 month wait - for an endocrinologist. I paid my $250 copay and I saw him and I cried because I knew I hadn't been managing well. I was depressed. I was rationing. My A1C had creeped up since grad school. I was running out of insulin. I was not in a good place. My doctor helped give me the push to get back on track, and he got me samples. I couldn't afford my prescriptions because my school insurance didn't have adequate coverage, but I made it. 

So how did I end up here after I graduated? I felt as though I did everything right. I selected the job with the better insurance. I came to love my job. 2 months in, I learned the company was pulling out of the nursing facility I was in, leaving me the option to stay on with the nursing home under the new company, or transition with the old company, but to an outpatient setting, which I don't like. My heart is in geriatrics. I love geriatric PT, and for a gamut of personal reasons, I do love the building I work in. It is a fast-paced, high admission facility with patients with a wide variety of diagnoses and is unlike a lot of other nursing homes. I love that about it, and I've learned a lot. The company that was taking over also offered me a considerable pay raise, so despite my reservations, I opted to stay on. It was November 1. I chose an Aetna plan for the last 2 months of the year, which covered my scripts with a $40 copay, but my doctor wasn't in network. So for open enrollment for 2018, I took the survey to recommend an insurance plan for me within network with my doctor. A UHC plan came up. Before you make any judgement, please bear in mind that these months were the first in my life that I'd ever had healthcare or selected health care plans. I didn't know much about it. The plan said it covered my prescriptions with a 20% copay, and I thought this sounded reasonable, and the premium was reasonable - my Aetna plan for two people was almost $650 a month. UHC's was closer to $400. So I selected the plan and figured I didn't mind the added expense. It wasn't until January when I went to fill my prescriptions that I learned that this applied after I met my deductible of $4500 for the year. The information about the plan stated it covered my meds, but I didn't realize this was after the deductible. This wasn't going to work. I desperately called and begged HR to let me change my plan. I tried to file an appeal. It didn't work. I was outside of the enrollment period, and this involved government rules. It wasn't HR just being jerks. I understood their hands were tied. I weighed my options. My choices were to find a new job and leave the one I loved, or stick it out. I made the decision to stick it out. Since then, I've been very vocal about the disparities and the underinsured in our system. I always have been - since my diagnosis - but especially now. I interviewed for an article with Bloomberg. I've posted on social media. I've reached out to Senators to laud for witholding the pre-existing condition mandate and holding drug companies accountable for their prices. 

My recent social media post went viral and I received a lot of feedback about (more) use of coupons and patient assistance programs, all of which was greatly appreciated, as anyone seeking to help is always appreciated. Prescription savings cards aren't run with your insurance, so if a savings card saves you $100, but the cost of the drug is $500-600, this is still a great deal of money. I've applied to every coupon and savings program for all of the drugs I'm on, still to encounter this problem. Walmart insulin I wrote a post on a few weeks back which I'll refer you to. But in short, Walmart provides cheap insulin manufactured from the 80's. The Reli On, aka Walmart brand of insulins (novolin or humulin, I know they sometimes switch who they carry) are the older generation of insulins, and so they don’t provide quite the same coverage for blood sugars. They have a shorter half-life than name brand insulins. Their intermediate long acting has to be taken two times a day instead of one. 70/30 is an insulin they don’t even teach most patients to use any longer, because it’s outdated, and it has a high risk of causing increased hypoglycemia because it can be effective up to 24 hours with a peak effect at 2 hours. Not to mention the obvious, they're vials that involve the use of syringes, versus other more technologically advanced methods these days. Will they keep you alive? YES! Are they an awesome, state of the art method of giving you the best glucose control without giving you an increased risk for lows? Do they give you a good quality of life? No. They keep you alive. That is all. And I like being alive, but there is no denying it's harder to control my glucose on these medications, which I have used when I've had nothing else. 

Now let's move on to patient assistance programs. I automatically don't qualify for patient assistance programs because of the fact that I have insurance, but a few people brought it to my attention that Lilly, one of the three insulin companies, changed their program to cater to individuals with high-deductible plans like me. So I promised I would check into it, hopeful again that this might help. It didn't take me long into the application to realize I'm well above the income threshold, posted here: 

In case it's hard to see, here's the link. The income threshold for 2 individuals, as is the case with me, is $47,790 per year. The average salary for a physical therapist is $83,000/year. 

That's plenty to pay for insulin, right? Let's break that down. For the record, I'm being transparent with this because I legitimately want people to understand what it's like to crunch the numbers for yourself. That salary listed above leads to an average of $3000/per 2 week. About $600-800 of that is taxed, and then another $250 goes to health insurance + HSA contribution. Rent is $1600, then there are utilities, insurance, streaming, groceries, has, etc. I pay a larger amount on student loans to avoid compounding interest because I don't want to pay them forever, so I pay about $1100 per month. I then work gigs with my own business to supplement my income with $1000-$2000 per month. 

Now imagine your health insurance pays for... pretty much nothing. Insulin is $800-1100 minimum. Not withstanding other supplies. You do the math, and tell me how much money will get saved every month. I am not below the poverty level by a long shot. I'm well into upper middle class. But I'm in the 22% tax bracket. My insulin + additional diabetes supplies costs almost as much as my rent. Does this make sense to you now? Yes, I get it, get your priorities straight. What's $1100 compared to your life? But imagine going to school for 8 years. Working harder than anything to get there. Weigh my desire for financial stability, starting investments when I'm young, and taking mental health breaks and the occasional vacation to have time to relax from consistently working 5-7 days a week. I had my first day off in 2 months last week. 2 months. Am I wrong to occasionally splurge on myself? Am I wrong to want to save my money instead?

I would argue no. And to those who would say otherwise, I would say: shame on you. I have worked hard my whole life. I have sacrificed more than you will ever know or imagine to survive with a disease I never asked for. I never asked my pancreas to stop working. I also never asked myself to sacrifice my dreams because it stopped working, either. I would never ask that of someone. And neither should you. We as Americans should not have to make choices that sacrifice financial stability or rewards for our hard work for basic life needs. Insulin is not a choice. Insulin is a NEED. If I don't have it, I'll die. Period. If prices keep raising, I'll have to keep finding ways to make do. If insurance premiums continue to be unaffordable, I'll have to continue to make do. I will sacrifice these things if it comes down to it. It will be hard. There is no debate that I will do what it takes. But is that the way I want to live my life forever?

No. I've fought this battle since I was 17 years old, and I will always fight this battle. But it takes its toll on you. The lack of stability in my healthcare journey has been a hard one wrought with anxiety, depression, rationing, eating disorders, and the like. I know I am not wrong in wishing it was not this way. Just like I know I am not wrong when I say, again, that your coupons do not work. Your patient assistance programs do not work. Insulin/Pharmaceutical companies are using these programs as a guise in which to act as though they care about helping people like me without actually doing anything to help people like me. Too "rich" to qualify for help, to "poor" to afford my lifesaving medicines. Here is an idea instead, if coupons are that effective: make the medications cheap enough so that you don't have to use a coupon to pay for them. You'll save money not having to pay people to process the coupons in the first place. And, people like me could then afford them regardless. Until this change happens, though, I will not be silent. I will continue to fight in what I believe is the only sustainable, long term option: holding drug companies accountable for continual rising insulin prices. And I hope that reading this inspires you, too. 

To my Coworker Who Tells me Not to Inject Insulin in Front of Her.

"Ugh! Lacy! You know better than to do that in front of me."

I stare at my coworker from across the office. Our office is more of a closet, really, small and cramped. It fits about 3 or 4 people comfortably. It's where we eat lunch, do notes, or take a break from the crowded and hectic gym. It's where I keep my insulin. It's where I give injections when I eat my meals so that other people don't see me, or so I don't have to do it in the hall or gym, both more considerably open places.
I love my coworkers, but there's one who is very vocal about how she doesn't like needles. At all. I don't really know what to say to her. Do I feel bad and go somewhere else, inconveniencing myself so that she is comfortable, because she is my friend? Do I ignore her? Do I keep turning around into the corner and inject facing the wall when she isn't looking? In public, were it a stranger, I feel that I would act differently. Perhaps I might say something, as I've done in the past. When it's someone I know, I don't know how to tell her that this hurts my feelings and make her hear me. This has gone on for a year. A year of "Ewws!", and "Eek! You didn't tell me you were doing that", and, "You know better than to do that in front of me!", and, "Ugh, even though you're turned around I still know you're doing it, and it makes me shudder."

I flashback to a moment I remember vividly in my undergraduate years. I stood in the middle of the admissions office, where I worked as a work study student. I gave an insulin shot in front of my boss, whom I was relatively close to.
"Why do you always look away when you give insulin shots?" She asked me.
I hadn't realized I did that. I shrugged. "I guess I'm kind of self conscious about what people think. They think it's weird. They don't like it. Some people tell me so."
She looked me in the eyes. "Don't feel like you have to look away," She told me. "This is something you have to do to live. That's nothing to ever be ashamed of."

I remember this moment, and I look back at her, and I say sorry. And then I say, "Wait, why am I apologizing? This is my pancreas."

It's not a huge deal, in the grand scheme of things. My coworker is harmless. She doesn't mean to be hurtful. I find it funny, working in a nursing home with a lot of "gross" things, and this is what grosses her out. My needles. But I think that it makes me sad, still. My Diabetes has always been a wedge of misunderstanding between myself and other people. Waitresses will joke that I don't need diet coke. People will comment that I obsess over carbs too much if I'm discussing it with someone as I'm ordering without realizing why. I'll pay extra at a restaurant to get extra vegetables instead of loads of rice and noodles and people will think I'm picky. Diabetic dietary restrictions are tricky - they're not as clear cut as vegan or gluten free. If you're those things, people seem to understand more. If you're trying to eat low carb, an imprecise art that does help with managing blood sugar levels, people find you, at times, unreasonable and difficult. People tell me they don't know how they could ever be diabetic because they hate needles too much. I guess those people would die, as I would have if I hadn't overcome my severe phobia of needles at the time of my diagnosis.
My Diabetes has always made me someone that people stare at if I inject in a restaurant. I cover my glucose monitor screen as waiters and waitresses will nosily look over my shoulder as I check my levels, curious as to what the machine is. These things feel private, and yet they're also a part of my day to day life that I sometimes don't even stop to think about. Like pulling out a phone or putting on chapstick. But I still feel eyes on me. My husband and I were at a restaurant about a month ago, and I gave insulin while sitting next to a group of two guys and a girl about our age. After giving the first shot, the two guys stared at me while they didn't think I was watching. I saw them out of the corner of my eye. They kept glancing at me, and it made me self conscious. They all whispered amongst themselves. When my food came out, they glanced it up and down, then glanced back at me, as if weighing whether or not I could be eating what I ordered. I wanted to say something, but I also didn't want to start that kind of a conversation when I was trying to enjoy time with my husband.

I feel as though I can't complain about these kind of things, because I don't go give insulin shots in private. But going to the bathroom just to give insulin shots when in public is something I liken a little bit to someone asking you to eat your meals in the bathroom. Something that is a little bit gross and a little bit of an inconvenience. I think that Type 1 is enough to suffer through on its own, without the added stress of judgement from others for what we have to do to survive. I don't blame human nature's need to be curious, and I encourage that. I welcome questions. But I wish that you would see that I'm just trying to stay alive like we all are. I'm just having to do a little extra to achieve that each day. And I wish that you might see my injections through that lens, instead of through one of a gross needle in my skin. I don't like it anymore than you do. I don't want to be an inconvenience to you if you don't like needles. I don't want to make you cringe. The truth is, sometimes it makes me cringe, too. Because it hurts. It hurts me to know that this is what I have to do every day now. It physically hurts because of the fact that needles hurt. It hurts when they bruise. It hurts when the insulin stings. I don't want to make a show, or get your attention. That's not why I'm doing it. I'm just doing what I have to do to survive.

The Loss of Normal.

As I lay on the ground, staring up at the ceiling, heart pounding, mind unfocused, sweat accumulating on my lower back and forehead, I am tempted to think that this is normal. 

And truly, it is kind of normal. This has been my normal for seven and a half years now. Those seven and a half years feel acute. I have noticed every moment of them, every second of the presence of Type 1 Diabetes in my life. How could you not? Early on, when I was diagnosed, I used to dream of going through a drive through or eating lunch and just eating. Not stuffing my face eating. I mean, eating without thinking about it. No counting carbs, no stopping to check my blood sugar or give insulin. What would it be like to think of food as just food again? What would it be like to not think twice? For my days to not be filled with practical little math equations and calculations in my head?

I don't remember anymore. I don't remember, and that upsets me. I have to think long and hard about those times now, because it has been so long. I have to try to forget that Diabetes happened to me. Because the truth is, the feeling of normal has been erased from my life. I can hardly remember a time now where I don't think of food in the way that I do now. I could try - and have tried - to salvage that. I've tried to ignore the illness that is there, stop caring for myself in some silly protest that accomplishes nothing except for harming myself. I've had burnout, gotten tired of being a full-time pancreas. But it doesn't erase the loss of normal. Nothing does. 

We take for granted the little things in our life that are normal. Working as a physical therapist has taught me that, and so has living with a chronic illness. How many things do you - do I - take for granted each day? Our ability to walk, to talk, to remember, simply to be free to have autonomy over your schedule and when you want to do things that you want to do, or to eat food, or a number of things. I work all day with people who have lost so much autonomy over their lives because of their debility. It makes your heart ache! I cannot be mad at myself or for other people who take these little things for granted that add up to so much. I don't think it's truly possible to fully appreciate them until you miss them. I know that was the case for me. And now that it's happened, I spend every day wishing I could go back to how things were.

That sounds really sad, and it is sad, but it's not supposed to be completely sad. I do appreciate what diabetes has done in my life. I don't mean the stress of paying for it, or the highs and lows, or the needles, the insurance woes. I appreciate that it's changed me, though. Suffering deepens us. I, personally, like the rest of humanity, do not like suffering. But I do know that I am a deeper person for what I have gone through. Someone once close to me told me, "I don't know if I'd know you the same way if I had met you before you were diagnosed with Type 1." This comment upset me a little bit at first. Were they saying they defined me by it? That wasn't the case, though. They had an illness too. Having an illness has helped me to connect with a lot of other people going through their own suffering when it comes to help. Having an illness has helped me to identify with a platform I care deeply about. It's given me a lot of ground to stand on. Do I hate it? Every day. But I am who I am with it. This is my life. I have many things I love about my life, and I'm incredibly blessed, and I have found ways to make peace with the difficulty.

I am reminded as I lay on the floor, feeling too weak to get up, that this isn't normal. I laugh a little bit at that. How many little moments throughout the day do I go through these things and no one sees? I down glucose tabs as I face paint a big gig, not skipping a beat, even when my shaking hand can't keep the paintbrush steady due to a hypoglycemic attack. I'm sweating in between patients, I try to take a quick break in the office, steady my feet, drink some juice to not feel this way. Go back out to treat too soon because I can't let Diabetes get in the way of my job. I lie on the floor of an apartment that isn't mine with friends. They tell me I can eat some of their pizza, but I've already ate to correct the low. If I eat more, my blood sugar will get too high from the over correction. This is hard to explain. It's hard to explain that you don't feel instantly better after eating, either. I just wait until my body cooperates again. Every low is different. How do you explain the difference between a bad low, an okay low, and really bad low? You can't. You can try, but they don't quite understand. And that separates you from people, and you have to learn to be okay with that, and not be bitter about that. 

This isn't normal. It's my normal, but it isn't normal. I was once normal. Once, and it's hard to remember now. I will manage. In a few minutes, I'll be fine. But sometimes, I remember that this is an experience I often carry alone, when it comes to the people around me that I know. That's hard, and that's humbling. But I hope that you, the reader, read this - and take a little less for granted today. I hope you know that I feel for you, in the ways that you may suffer that are invisible to the eye. It is not easy to have invisible problems, or an invisible illness. Let's be kind to each other. Let's try to understand a little better. That way, we bear these burdens feeling a little less alone.

One of the Toughest Things I'm Learning in Adulthood so Far is... Relaxing?

Anxiety is definitely something that has reared an ugly head at me lately, and I suppose that shouldn't come as a surprise seeing as I tend to push myself a little too much. It's funny, though, because my whole life I've always thought I never struggled with anxiety - but really, I think I just didn't have a name for what I felt until recently. In school, I always used to tell myself how much less stressed I would be when I graduated, but now that I'm out of school, it always seems as though there's something else to tackle, to manage, to overcome. Then again, I suppose that could be considered adulthood. But shouldn't adulthood also be seeking a healthy balance between these things?

I've been trying to be more introspective about it lately, and my stress/anxiety certainly has traceable sources. Namely, work. I love my job - there are some days where I find my job very stressful, but if you were to tell me to find a new job, I could give you a dozen reasons why I love being right where I'm at. But, even I have had a hard time lately reconciling the love I have for my job and the stress I feel. Working in a skilled nursing home, I find some days a lot more challenging than others. The patients can be physically demanding, with a large portion of my patients being bariatric, suffering from recent strokes, new amputations, or moderate to severe dementia. Some days, I find the work very rewarding. The day I helped one of my patients with a bilateral amputation stand, I cried with him in joy. I've helped patients get on their feet in time to discharge for their birthdays. I've made special patient relationships and learned a great deal. Other days, it seems like nothing goes right. My 30 minute treat turns into an hour. I get yelled at. I get yelled at again. A patient doesn't want to come to therapy but it's an assessment day so they have to get their therapy minutes. One patient's family member won't stop hanging around the gym asking non stop questions or stopping back in as I'm trying to just take a moment or catch up on the 2 pages of documentation I have. 7 patients will be admitted over the weekend and I'm the only physical therapist currently, leaving me trying to just play catch up the first half of the week. It's a job that, quite frankly, can breed stress, and this is something I've had to be very mindful of, especially over the past month, since I've been the only PT. I am the kind of person that puts my heart and soul into my work, no matter what it is, and I want to try to make a difference in people's lives. But some days, I leave work feeling like I've done no good and my best just isn't good enough. How do you cope with the ups and downs?
To combat these things, as well as to help pay off a bulk of my student loans from early on, I've continued to do gigs in order to make extra money, but also just to give myself a break from health care and get a few hours to feel truly good at my work. I've spent a lot of time reflecting on why I find my work as a children's entertainer at times, more rewarding than my work as a therapist. The conclusion I have come to is that, yes, they are both rewarding in different ways. Therapy is a more hard-earned, disciplined reward, with not always instantly gratifying outcomes. You may work with a patient for works before those small strides add up to something truly celebratory. And what's more - the very nature of therapy, of healthcare, is different. You are assisting people through some of the most difficult times in their lives. Entertainment, on the other hand, is instantly gratifying. I'm a special occasion expense. People hire me for a specific reason and they want me at their events. People review me and praise me for my expertise. Parties are full of laughter, song, and dance. Smiles and joy. I assist people with some of the happiest days of their lives. Entertainment is riding a high - whereas healthcare can be a combination of highs and lows. I believe a balance of the two has certainly been instrumental in combating any early new-grad burnout, as it's important for us as individuals to feel that we are good at things, while being challenged to expand our skill sets and push us on to more.
However, as a result, I know I've certainly asked a lot of myself. I always thought that doing extra work might be easier outside of school, as school was certainly stressful. However, I think I've found the opposite to be the case now that I've graduated. I find work a lot more draining than school was sometimes, as much as I love it. Perhaps it's the extra responsibility, or the standards I put upon myself... or maybe it's just because I'm getting older? But I'll come home from work a lot more tired than I felt after a day in the classroom. With this in mind, I don't feel as energetic as I once was, and I find myself needing a lot more mental health days and rest breaks in between. This is not as easy to execute as it sounds, with high student loan repayment, the rising cost of living, and trying to put away savings. I have been financially stable since I was 17 years old, having built a successful business in Georgia. I opened my first mutual fund at 18, as the financial adviser gawked at me and asked me how I'd managed to save what I had. However, life in this generation is expensive, and trying to save for bigger purchases - a car, maybe a home someday, and just have more financial security than I did when I was 18 (which, I'll readily admit, I had more saved at 18 than I do now, after a wedding and 7 years of college haha) - takes a lot of work. Combine this with the tendency to load too much on to yourself, and I know that it can be a recipe for unwellness, if not executed carefully. I am my own worst enemy, with the standards I hold myself to at times.

To help, I've certainly tried to incorporate a lot more "self wellness" into my routine lately. Meditation, quiet time, weekends off, hiking, date nights, stepping away from social media, joining a church community group, consistently going to church, yoga, learning dungeons and dragons (nerd alert), picking up a book - wellness is a lot of things. As best as I can... I have a very hard time staying still, and I like to fill every moment of mine with something useful, something worthwhile, something productive. Sitting alone and just sleeping or resting is a largely foreign concept for me, something I've been trying to get better at, especially seeing as my husband is very fond of being at home. But managing stress also certainly has implications with my health, I know, and a lot of what I've been trying to do has centered around trying to manage my health in terms of Diabetes goes. Just trying to change the mindset of "I'm too busy, I'll check my blood sugar later" has been a tough one for me. Or trying to sit down when I get hypoglycemic to eat and let my sugar come back up in between patient care. Taking the time to cook healthy, low-carb meals at home. And... yes, perhaps trying to find an option for work with better health insurance. As much as I love the work that I do, I've spent over 8 years putting my health on the backburner for the mythical "someday" I wouldn't be stressed and had perfect health insurance benefits. As I've gone through adulthood, I have certainly learned, with great disappointment, that the world is not like that. Perfect benefits don't exist, or if they do, they are transient, and life in America with an expensive chronic illness is a volatile, ofttimes emotionally and physically trying journey that beseeches you to fight and advocate for yourself every step of the way. I have had to spend a year coping with this reality, after fighting to be out of school and reach the light at the end of the tunnel for so long, and I've certainly had to build my desire to fight back up after learning how hard things would continue to be. There are days when you do get tired of fighting. There are days when you get angry. Days where you wonder why things couldn't have been different, or why you were chosen to shoulder this burden. But, I think another part of seeking better self wellness for me has been to accept the things I do not have control over, acknowledge what makes me unhappy or upsets me, and focus on what I can do to change these things. As a goal oriented individual, this method has helped me a great deal to focus on what's important, and to help me lead a proactive lifestyle. But on the same coin, taking that same intentionality and turning it into intentionally choosing to relax and sometimes do nothing, and to let go of the things that stress me, has been equally important in learning what I need to function better.

This post wasn't necessarily super exciting, but it's something I've been thinking about for a while, as I enter my second year as a physical therapist, having learned a great deal and having realized how much more I currently have to learn. And it's something I've been thinking about as I approach my 25th birthday, which I'll admit I've been having a hard time reconciling with, as I feel that adulthood is passing me so very quickly. 18 feels like a lifetime ago, while still feeling like a mere year ago. And I still feel somewhere very caught in between a teenager and an adult, waiting to feel as though I belong with other adults, but never quite feeling there. I suppose as a child I never considered that many adults might feel that way, but here we are.
Anyways, I thank you (as always) for reading my blog - stay tuned for more dia-ventures in the near future.