Tag: healthcare

Decade Challenge, AKA Still Homesick

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Yesterday, I found a picture of Gomez and me.

Someone took that picture a decade plus a few weeks ago at my boss’s Christmas party in 2009. We were smiling and hopeful. We were secure.

I was still an accountant.

It was a snapshot of life before.

Before Gomez’s immune system started to eat his joints, and before the million dollar pancreas incident; when we were able to afford whatever it would take to get him well because “medical care or groceries” wasn’t a choice we’d ever had to make.

Before Gomez got a second master’s degree; when Elroy still had a college fund.

Before one bad career decision made in good faith snowballed into 100 more bad decisions – each one with a worse outcome than the one before it.

Before my dad passed away.

Before we gave up the life and home we had made for ourselves because we trusted people when they gave us their word.

Before our spirits were bruised because we spent a year without a home of our own. When being “homeless” was an abstraction instead of something we had actually experienced.

Before I had ever experienced betrayal or carried around the leaden weight of grief; when I was able to tend to my mental health because I could afford to do it. When an appointment didn’t mean taking a half a day off work and trying to line up a driver for the hour-and-a-half trip because I was still able to drive and the therapist’s office was five minutes from my job.

When “back home” was a day trip destination instead of actually “home.”

Before epilepsy.

When “Everything will work out. It always does” was something I believed with all of my heart; when that phrase gave me enough hope to make it through the occasional rough day. Before it became a mantra that Gomez and I use daily when we discuss situations that we don’t have any real solutions for.

The 2010s simply broke me, but I keep scanning the horizon for brighter skies.

Labor Pains

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When I found out that I was pregnant, my boss granted me four weeks paid maternity leave. I was also allowed to use short-term disability to take two additional weeks off, giving me six weeks total maternity leave. I was lucky, considering there is no federal law that guarantees paid maternity leave in America.

Elroy arrived 5 weeks ahead of schedule. My body decided it didn’t like being pregnant anymore, so my organs started to shut down in an attempt to evict him. This is also known as HELLP Syndrome. He and I spent eight days in the hospital following his arrival to get his jaundice cleared and get my blood pressure and liver semi-straightened out. We were lucky, considering the high perinatal mortality rate associated with HELLP, which some sources cite can be as high as 70%.

After Elroy was born, I felt…off. Weepy. Panicky. Anxious. I had just been through a traumatic experience where I had to face my own mortality, along with the mortality of my newborn son, so maybe the trauma flipped a switch in my brain. Maybe my familial tendency toward mental illness was finally showing up. Regardless of the cause, it soon became clear that the “baby blues” had evolved into something more serious for me. I was scared to be alone with Elroy. The sound of him crying made me want to hurt myself. Elroy was a sleepy baby. Because he was premature, he had to eat every three hours, and we had to wake him up to eat. Feedings took over an hour because he would doze off as soon as he started to eat, plus he had reflux. Sleep was fractured and came with shame attached – I should be doing laundry / writing thank-you notes / taking a shower instead of taking a nap. Elroy and I were lucky because Gomez stepped up and took care of everything he could.

Then, right around the time my maternity leave was coming to an end, I became suicidal. I would lie in bed at night, unable to sleep because of my anxiety, and mentally inventory my medicine cabinet – What could I take to just go to sleep and never wake up? Was it possible to overdose on leftover prenatal vitamins? The only thing that kept me from attempting suicide was the fear that I wouldn’t be successful. There was no way I could leave Gomez with a disabled wife to care for and preemie to raise on his own. I was lucky because ibuprofen was the strongest medicine we had in the house.

Six weeks after Elroy was born (and when he should have been a little over a week old, had he not been premature), Elroy started day care, and I returned to work. Having babies is expensive. Having babies with an extended hospital stay attached is extra expensive. I couldn’t afford to take any unpaid time off because the hospital and doctors’ bills had already started to roll in. Then, the mom guilt piled on top of the PPD and the insane sleep (or lack of sleep) schedule. I struggled to make headway on the backlog of work that had piled up for my six weeks’ leave while trying to keep up with current tasks. I would lock my office door and pump milk twice a day, sobbing the entire time because my tiny baby whom I hadn’t ever really bonded with was being cared for by people I hardly even knew. I was lucky because I had an office door that locked, so I was able to sob in private.

Elroy was sick a lot that first year. He had RSV, more than one ear infection, and some febrile seizures which led to a two night stay in the hospital, in addition to the routine well checks and immunizations. Gomez and I didn’t have relatives nearby, so he or I had to take off from work every time Elroy was sick or had an appointment. I had several doctor’s appointments, as well – to keep an eye on my liver, to adjust and re-adjust my blood pressure medication, and to monitor my heart. It didn’t take long for me to burn through my company-provided PTO. My body had fallen apart. My brain was falling apart. I was spiraling, but I couldn’t do anything about it because now Gomez and I had a baby and we had to have my salary in order to make it from one month to the next. I was doing too much, and not doing anything well. I needed mental healthcare, but I was afraid to seek treatment because there are times when corporations do gross things like find a reason to fire employees who need to use their health insurance “too much.” I was lucky because I hadn’t already had the “talking-to.”

One positive aspect of working as an accountant was the annual Christmas bonus. Bonuses were robust, equaling more than 10 percent of my annual salary at that time. My salary wasn’t much, but the annual bonuses narrowed the gap between my salary and the salary of other accounts with similar experience who worked for larger companies or in public accounting. Our office closed on Christmas Eve and Christmas Day each year. On December 23rd, my boss stepped into my office with my Christmas bonus in his hand. He took a seat and explained to me that because I had missed so much work and because my performance had declined, I would only be receiving half of my normal bonus that year. I was clearly drowning, but nobody offered me a life preserver. Nobody even asked me if I was okay. I was drowning, and I felt ashamed – and I was being shamed – because I wasn’t able to just swim my way out of it. I felt like I was lucky, though, considering bonuses aren’t guaranteed. I guess I was lucky because I didn’t get fired, even though I live and work in an at-will employment state.

Elroy was two and a half years old before I stepped into a therapist’s office. I was lucky because I had found another job where I wasn’t afraid to use my health insurance. I was lucky because the suicidal thoughts didn’t dominate my every waking moment anymore. But I’m certain that there is some damage that won’t ever heal because I didn’t get help sooner.

So many people aren’t as lucky as I was; instead, they suffer in silence because they don’t have access to mental healthcare or the means to afford it. Mental health is just as important as physical health. Our society doesn’t bat an eye when an athlete gets a concussion or somebody breaks his or her arm, yet there is a shameful stigma attached to someone whose brain and emotions aren’t working nicely together. I’m lucky, though, because I’m still alive. All my experience took from me was months bonding with my newborn, the only newborn I’ll ever have, and half of a Christmas bonus.

Rural "Healthcare" Brought to You by Ballad Health

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Living in an area that is ravaged by the opioid crisis can make getting decent healthcare a bit tricky. That is why my family and I still travel two hours to see our primary care physician for illnesses, as well as for routine checkups and such.

But what happens when you have a seizure so severe that it scares those around you badly enough to call 911 while you’re still unconscious?

Well, here’s what I have been able to piece together from my husband’s eyewitness recollection and thoroughly reviewing my records regarding what happened to me after I was transported by ambulance to Dickenson Community Hospital in Clintwood, Virginia. It’s important to know that I had been seen in the same ER six months before when I was transported there by ambulance after suffering a seizure at school. That time, I came in conscious, was monitored, released, and recovering at home within a few hours.

Not long after I arrived in the ER this time, I suffered a second seizure. My husband, who was at my bedside at the time, notified the ER staff that I was seizing again. No one answered his calls for help or came to deliver basic seizure first aid until I turned blue. In order to stop the second seizure, the ER staff administered a 2mg dose (or, as I like to call it, an elephant tranquilizer dose) of Ativan via IV. Thankfully, the Ativan stopped the seizure, but it also kept me functionally unconscious for the next 48 hours.

While I was DCH ER, the care team ran a series of lab and imaging tests. One of the blood draws revealed an elevated ammonia level – well over twice what is considered normal, in fact. The labs also showed a mildly elevated alcohol level and an elevated thyroid hormone level (something that has never been abnormal in my life). Someone on duty in the ER asked my family if I drink (I don’t). My husband/my mother/they both told the care team that I don’t drink. However, instead of taking their word for it and simply re-testing the labs, the care team noted in my chart that they were concerned that I was experienced DT-related seizures due to alcohol withdrawal.

This resulted in a transfer to a hospital two hours away (hello to another ambulance bill). I was admitted to the hospital some eight hours after the first seizure. My ammonia level was immediately checked at the “new” hospital, and the level was normal. But because the staff at DCH ER shat the bed and refused to believe that my husband and mother were being honest when they said I don’t drink, the hospital CT-scanned my abdomen (hello CT scan bill). The scan was normal. The ammonia level was normal. But I was still fed lactulose for two days (hello hospital pharmacy bill).

About the only thing the hospital didn’t do during my mini-vacation there was call or notify my primary care doctors, whose office is RIGHT ACROSS THE ROAD. The few people familiar enough with my medical history to answer questions about my alcohol use (or lack thereof); who could have explained that I have Gilbert’s Syndrome, which means my bilirubin levels tend to elevate when I am sick, stressed, or hungry; who know that I have had seizures in the past, but had not yet been diagnosed with epilepsy did not even know that I was in the hospital that sits less than 50 yards away from their office. I was unable to advocate for myself during this time – elephant tranquilizer, remember?

People are human, and humans make mistakes. In my case, though, the mistakes, the refusals to listen, and the faulty judgments compounded and left me owing a hefty bill that I cannot pay for tests and treatments that I never needed in the first place. I spent three days being treated as an alcoholic (despite anecdotal and laboratory-confirmed evidence to the contrary) instead of having the tests and care I needed to try to pinpoint the cause and proper course of treatment for my epilepsy.

After I was released from the hospital and reviewed my records, I immediately filed a complaint with DCH ER. After three months without a response, I called today and learned that they had dismissed my complaint and closed the investigation because, according to them, “there’s no way they could have messed up.”

I hope I never have to visit DCH ER again – I’ve given my husband strict instructions to just keep me on my side and drive as fast as he can to get me to Pikeville should I suffer another seizure. He knows where the needle and thread are and how to use a tourniquet in case I’m bleeding out. I’m going to make him watch The Dollmaker later to learn how to perform a hasty tracheotomy. But, for the sake of everyone else who doesn’t have a choice – or maybe for my own sake one day if I do something else to piss off the epilepsy gods – Here’s my advice to the DCH ER staff: Listen to your patients. If your patient is unconscious when he or she arrives, listen to his or family. If you run a test and that test reveals results that are out of line with what the patient or their family tell you, speak with the family about it, and RE-CHECK THE LABS. You don’t have an easy job, especially in this area. But don’t let what you normally see cloud your judgment of everyone who comes through your doors. Better yet, don’t judge at all. Just listen and put yourself in your patients’ shoes. Also, it’d be a great idea to brush up on epilepsy first aid.

Homesickness

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I’m currently wading through what I’m calling “a dark night of the soul.”

Maybe it’s the time change after we “fell back” earlier this month.Maybe it’s the starkness with which the seasons change up here in the mountains.

Maybe it’s the antiepileptic medication.
Maybe it’s the 55-gallon drum full of trauma that I’m dragging around while I try to dig to the bottom of it all, understand my feelings, and clear it all out.
Most probably, it’s a combination of all the above.
I spent my first year back here convinced that I would feel more at peace once we found a house. Okay, that’s not exactly true. I spent our first three months here thinking we had a house, then I spent the nine months after that trying to find a house. That was the prize that I kept my eye on. Just find a place to live, and everything else would sort itself out. Eventually (almost a year to the day after we moved), we closed on the house we’re living in now.
Then I was diagnosed with epilepsy, which means I can’t drive for at least a while.
Then Gomez and Elroy met a deer in the middle of the highway and almost rurnt my little car.And the hits just keep coming.

Seeing how happy Elroy was here and seeing Gomez flourish at his job were enough to sustain me through a solid year of the three of us living out of one bedroom, but I don’t know how much longer that sustenance will last.

I’m homesick, but my homesickness isn’t for one specific place.

I’m homesick for a pre-mined Yates Gap that doesn’t have a clear view to where my grandmother’s house used to sit and for a Fremont that doesn’t smell like the sulfuric pits of hell.

I’m homesick for our old house because that’s where I watched Elroy grow up.

I’m homesick for my life before I came back “home” – when distance was the reason I felt like we were always on our own because the truth is that absence is a choice, and the truth hurts so much.

I’m homesick for the option to shop from more than one grocery store, for a Wal-Mart that doesn’t take the better part of an hour to get to, for decent healthcare that doesn’t require taking a sick day and spending three and a half hours on the road to access.

I’m homesick for our barely-middle-class life, for a time when the idea of having to pay for braces for Elroy or a routine oil change or an annual property tax bill didn’t send me into a “how are we going to make it this month?” panic.

I’m homesick for the anonymity that living in a larger (relatively-speaking) area provides. That way, I could seize out in school in peace without having to assure my mother months later that I absolutely did not have a stroke despite what “everybody” says.

And despite all of my backward-looking sadness, I know that we have to make this work. We chose to move here, out of everywhere in the world, and we don’t have the option to change our minds now.

Sometimes Enough Still Isn’t Enough

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In 2011, Gomez experienced a health crisis. I’m not using hyperbole; he was an extremely sick man, and now he has what I teasingly call “the million-dollar pancreas.” At that time, I was working as an accountant for a regional coal business. Gomez was teaching. Elroy was a toddler. We were living two hours away from anyone who could help us out with childcare. I was working 10-12 hour days and sometimes working out of town for a week at a time because our company was in the midst of being acquired by Mean Green. For two solid weeks, I worked in the office and came home to help care for Elroy while I watched Gomez as he lost 30 pounds and turned a sick shade of deep yellow.

Thankfully, we were encouraged by The Best Healthcare Provider in the Entire World to drive to Charlottesville to seek answers at UVA. We drove Elroy across the mountain and dropped him off with my mom, unsure of when we would be returning to get him. I drove through the night as Gomez snoozed in the passenger seat (something a well Gomez would never do). I was worn out, worried about Gomez, and stretched so thinly that felt like I would shatter if someone looked at me wrong.

But I didn’t have to worry about how we would pay for Gomez’s medical care or our travel expenses. He had health insurance through his employer, and he also had secondary coverage through the plan that my employer offered. At that time, I earned the bigger salary, so we lived comfortably. We were six years into paying the mortgage on our house, so we had started making a bit of a dent in the principal balance. And let me be clear, even if I had been worried about how we would pay for his care, I would still have taken him to UVA. There is no amount of money that I wouldn’t have paid or debt I wouldn’t have gone into to have a healthy Gomez.

Now, the roles are reversed. I’m the one scaring Gomez with my health problems, and he is the one taking care of me. But somehow, our situation now is more tenuous than it was eight years ago. Now, we are one month into paying off a new mortgage on a new-to-us (but definitely not extravagant) home. Now, we are less than seven years away from Elroy going to college (if that’s the path he chooses). Now, we are paying off student loans for a second Master’s degree, in addition to two Bachelor’s degrees and a first Master’s. And we’re doing it all with much less cash flow coming in, since I left my accounting career for one in education, and we both took significant pay cuts to return to the Coalfields. So when I woke up in the (newly minted, healthcare-vacuum creating Ballad Health) hospital a couple of weeks ago, not only was I scared about my health and crying to see Elroy, but I was also worried about the bills that my special brain were racking up. Gomez would never admit it, but I know he was worried, too, because he’s much more fiscally-conscious than I am.

Following my seizure in February, I made Gomez promise to never call an ambulance again after I saw the bill for the ride to the ER. He didn’t have a choice this time, because I was in worse shape than I was last time. When I saw the neurologist last week, Gomez and I had to ask her for an alternative to the anti-epileptic medication she suggested I try, because the one she mentioned doesn’t offer a cheaper, generic option. People in the United States are making choices about their health based on what they can afford and not based on what’s best for them – and that only applies to the people who are fortunate enough to have access to healthcare in the first place.

Gomez stays working at least two jobs, on top of taking care of me and Elroy. There was a time last year when I had two part-time jobs in addition to my teaching job. I had to back off from the part-time work, though, because it turns out that waking up at 3AM on weekdays and pulling all-nighters on the weekend to teach English online to students on the other side of the globe can drastically lower one’s seizure threshold – and there are only a handful of part-time work options open to someone who lives in this area, consistently works around 60 hours a week at her full-time gig, and can’t drive. We each have a Bachelor’s degree, piles of additional continuing education training, and Gomez has not one, but two, Master’s degrees. We drive older cars. We live in a 54-year-old home that’s value is less than half of the national average. We only have one child. We’ve taken exactly one vacation in the past seven years.

I’m not saying that we shouldn’t be having such a tough time or that we deserve more than others because we are college-educated. I’m complaining because no human being should have to worry about how much it’s going to cost to stay alive. I’m complaining because no one should have to choose between a gallon of milk and a day’s worth of medication. I’m complaining because the years I spent studying business and accounting coupled with the time I worked as an accountant for a regional healthcare corporation allow me to see how dangerous the current iteration of our nation’s “healthcare” system is. I’m complaining because, while we might be able to figure out a way for me to afford to live, there are tens of millions of people in our country who can’t even afford to die because they make less money than Gomez and I do and live in areas where everything – from housing to groceries – costs more than it does here. I’m angry because the very people who created this gross, profit-driven, “bootstrap” mindset of American life are the same people who destroyed an entire middle class and made it impossible for anyone who makes less than a six-figure annual salary to make it under even the most modest lifestyle – AND they’re revered as pillars of the nation and oracles of business acumen. They’re creating policies that affect us all, and they aren’t even qualified to do so (I’m looking at you, Betsy DeVos). I’m thankful for all of the love and support that our community has given us over the past few weeks, and I’m thankful that what we are going through isn’t worse, but I’m angry because we are surrounded by people whose situations are worse, and it doesn’t have to be that way. I’m angry because our generation was sold a bill of goods that is rotten. Getting an education, being honest, and working hard are not enough to create a better life anymore; those virtues are only enough to barely eek by, if you’re lucky.