Welcome to the United States of America, where we apparently proudly don’t use universal healthcare because medical help isn’t a right here. We don’t want our taxes to go and help our fellow people, but we won’t complain much that we pay hundreds of dollars for insurance which is blatantly more expensive to .
Now, if you’re in the United States reading this, there is a good chance you laughed and said “Damn straight bitch.” If you’re in like, Canada, France, Sweden, Brittain or most other first world countries, you probably sighed as you know where I’m going with this and the culture I am trapped in.
My name is Ariel, and I suffer from Narcolepsy with Cataplexy, and Fibromyalgia.
For years, I struggled to maintain a job, because I was sick. I didn’t choose these ailments. Neither of these ailments were preventable by my part. This isn’t a result of lifestyle choices, this is a result of being born. I inherited this. From parents that didn’t use birth control properly because our education system relies on abstinence based teachings rather than protection and awareness. That’s not my parents fault. That’s the systems fault. Apparently they used some kidna sponge thing, the fuck if I know what the hell that is. But as a result, Lil ol’ Narcoleptic me was born. Thanks, I hate it.
Put movie tropes aside, everyone suffers a bit differently. For me my Narcolepsy means night terrors, sleeping 18hours and waking up exhausted, some early morning or late night hallucinations, sudden collapsing with minimal warning and paralyization spells that last anywhere from 4 minutes to 40 minutes. Oh, and pain flashes that feel like I got assaulted head to toe with a baseball bat. Ok, now you know my case. Welcome to my nightmare.
I was on meds for Narcolepsy for years. The first ones prescribed gave me crippling anxiety and heart palpitations…..and didn’t do a damn thing to help my condition….No bueno.
The next ones DID help my Narcolepsy symptoms. By like. 10%…don’t misunderstand me. Anything is better than nothing. I clung onto those mediocre functioning pills like it was my own accidental infant. Side effects is just massive dry mouth. Didn’t touch Cataplexy, didn’t touch Fibromyalgia. But hey. I went from needing 18 hours of sleep a day to 14. I’ll take it.
I assumed I’d just be suffering forever. I attempted disability numerous times but when you look at a girl in her early twenties apparently the trend now a days is too assume I snorted tide pods and want a free ride. When I spoke to lawyers to help me they literally told me and I quote. “You have a strong case but there’s just no way we would win since you’re so young. I’m sorry, good luck…” Ok. So that’s out.
For a while I managed to survive. I was very sick. And bosses at first would be empathetic. Assuring they’d work with me. I am a very hard worker, and when I have a good day I will out of moral obligation out perform everyone around me. Sadly those days are few and far between. And no matter how empathetic your boss is, there’s a job to be done and if you aren’t doing it, you don’t stay. “I have to let you go but I will happily be a job reference for you….” That’s nice.
Do I blame them for it? No. I get it. That’s just life. That’s just the cards I was dealt. Suffering is the norm. If you can crawl to work when your legs are paralyzed and your spine burns while half asleep you obviously aren’t going to last long. Since I’m not disabled anyway. (Let’s get something straight. I am disabled. Our system rarely acknowledges disabled persons under 40 and even then it’s still a challenge.)
Well it get’s better, and by better, I mean worse.
You see, ailments don’t just. “Stay the same”. I wish it were that simple.
I miss the time where I only had a cataplexy attack like twice a week and F ibro was once a week. At some point, shit got way worse. And before you start spewing alternative medicine life style BS at me, it got way worse when I was at a healthy weight, relatively physically active for what I could manage, being nicknamed “The Rabbit” by coworkers for my love of vegetables. Are we clear?
So, my narcolepsy med was losing efficacy. And I didn’t have other options.
Copays were expensive (for me compared to my income, despite insurance) and my 15 minute timed visits with docs wasn’t helping our communication problems.
I was just getting sicker and out of options.
Well after my health taking an absolute horrid decline and me basically losing a large portion of my autonomy and only managing to barely get by, by the golden heart of my fiancé some good news fell before me.
Moving to Central Massachusetts was a smart idea as the medical community here is overall more versed than any I experienced in my home state NH. Not to mention, they have a healthcare program for adults that works “Kinda” like universal healthcare, but they are still picky and choosy about who gets what care and how. Doing anything more than your yearly doctors appointment requires “Prior Auth forms” (forms that your doctor says “Hey she needs this” and the insurance goes “…naaaaaah” or “ugh fine”) And you kinda just repeat the process over and over again until one side gives up. I assume our system is simply a fan of childhood nostalgia.
My new neurologist, whom I was hesitant to meet (I had been through 4 neurologists already. The previous one I loved very much and he was frustrated at my struggles. The other three who knew I had narcolepsy just reminded me that I’m young. Thanks, I didn’t know my numbers before now. Could you help with my A B fucking C’s too?) turns out to know a whole damn lot about Narcolepsy. He being younger himself more mentally aware that this disease doesn’t discriminate. Tall, thin, fat, short, White, Asian, if it’s in your genetics it’s yours. (And hey you can get it spontaneously too! And it doesn’t go away! Hahahaha…ha…ha…..)
“Xyrem” the name of a medicine he asserted has a high success rate. My google searches after hearing the name assured me the same. A majority of Narcoleptics (We’ll say 85 v 15) have most of their symptoms managed by this med. That alone was mind blowing. Most? You mean not just the sleep part, but the pain and sudden paralyzing too? No more night terrors where I wake up sweaty, crying, heart racing and knee twisted from kicking? Holy shit. Take my money. Oh nevermind. It’s like. $800 a month lol. Insurance please, please don’t be assholes. Give me this one break in life. Let me try the med that might help me be a mostly normal functioning person.
Well, after a year (yes a year) of that ‘Doctor vs. Insurance Company ring-around-the-rosie ‘ / ‘tag, you’re it’ childhood nostalgia thing I referenced earlier. (mind you, accepting several times that I was never going to be covered and I should probably just kill myself.) My neurologist that beautiful stubborn bastard won. I got it covered. I was in disbelief. Excitement. Shock. Happiness. Hope. Which ya know, thinking about it now. That’s pretty fucked up. Getting this excited and happy to get medicine for a disease I didn’t choose to have. Yeah, here in America that’s something to get excited about I guess.
Xyrem was everything I hoped it to be, and maybe even more.
It’s a very controlled substance. You can’t go to your local CVS or Walgreens and get a refill. This stuff is based out of friggin Ireland and sources to specific pharmacies in the united states (there’s only a few) they over night ship it to you from there and you have to be home to sign for the package. “It’s legit”. Since Xyrem can be abused for reasons I don’t really need to get into in this write up, if you’re curious you can look it up yourself.
I had Xyrem for 4 months and what was 4 cataplexy attacks a day- became twice in that fourth month period. That’s it. Just twice. What was 18hours of sleep (sometimes 14), was now 10. Fibromyalgia only flares up under specific conditions, and every night when I take my Xyrem any Fibro I have goes away.
I can’t even remember most of my dreams now. I hadn’t had a single night terror.
When I went to see my neurologist for the first time since starting Xyrem …he walked in confused. “Where’s your man?” and I smiled and told him “He doesn’t have to take time off work to help me to get appointments. I have some autonomy back thanks to Xyrem.” His face lit up he shook my hand. I began to tangent how much better and healthier I am doing and caught off guard I see my neurologist crying. “omg please don’t cry” and he is like “ahhh. Sorry. I’m just happy for you.” Then I start to cry because he’s crying . And we are both crying and laughing. Warmed my heart. This guy really, really, really cares. And he really, really, really gets it.
I could tell my life was going to get better.
“Lol made you look.” ……….
I get a letter in the mail that reads:
“If you don’t notify masshealth by 03/01/2018 that you wish to keep your current plan, you will automatically be switched to a new plan. This one: “
The date, that I received that letter, was 03/06/2018.
In a panic, I call. They inform me that I can switch back to my old plan but because I didn’t call before 03/01 it’d be a “process”. How could I have known? My first warning, my first notice was 03/06. What the literal fuck.
The agent on the phone tries to assure me, “Don’t worry. You can keep all your doctors.” I ask “What about my prescriptions? Do I need prior auth all over again??”
The agent reassures me “Nope, if you’ve been on those prescriptions with your last plan you should be all set.”
Damn my naive ass accepting that answer. “Should be” here in the US means “No but I don’t wanna deal with it so you can find out later that it’s not.” Sorry, I forgot my dictionary that translates bullshit that day.
So, I assumed I was ok. That this plan would be fine.
I dutifully told my neurologist, and the Xyrem Pharmacy about the update and they got right on it.
Now, early April. I went to get my refill of Xyrem.
“Needs Prior Auth?”
My doc submitted Prior Auth over a week ago.
“Oh…I see..I’m sorry Ariel…it says denied…”
But Why? They said I could keep my medications.
“I can’t answer that for you, you’ll have to call the main line on masshealth.”
So I call the main mass health line.
Thankfully, I only had to wait an hour and a half before reaching a human.
Thankfully that human, clearly miserable in their own life and hates their job was nice enough to inform me that he can’t answer that question and that I should call the actual insurance that masshealth assigned me. Oh. Ok. Thanks Jake.
So I call the insurance Masshealth assigned me.
“Yeah it says we cover that medication so I don’t know why we didn’t cover it?”
There’s no notes?
“Just says we rejected two of your doctors prior auths….Oh here is why! Because we don’t cover meds that get mailed to you. You have to pick it up from a pharmacy.”
I annoyedly (and unfairly at him) sigh because this was the same thing with the last masshealth insurance I had.
Sir, my med legally cannot be picked up at a local pharmacy. I have to sign for it. It’s a higher level controlled substance.
“Whoa that’s crazy.”
Uh. Yeah. I guess? (What do I even say to that.) (in his defense he’s very nice and I’m clearly depressed and not able to cater to his fun demeanor. But A+ for trying Robert.)
“To be honest. I have no idea what to do in this case. So I’m going to forward you to our pharmacist line and see if she has any info is that ok?”
Now I’m talking to pharmacist lady.
I explain my dillema…for the third or fourth time.
“Oh wow that’s complicated.”
“I have no idea what I could do on my end. I only know how to instruct people when Prior Auths are approved. Not rejected. “
…so now what?
“Here is this phone number. For mass health”
I already called masshealth. They told me I had to talk to you guys. I was on hold for over an hour with them.
“Right, but this number is a special number that directly routes you to their pharmacy department. No waits. Don’t press 1, it’ll take you to the main masshealth line. Just stay on the line and tell them that I told you to call that line, then explain your situation. “
“is there anything else I can help with?”
Yeah a reference number please?
So, then I call that number. I ignore option one and just stay on the line until someone picks up.
“Masshealth pharmacy blah blah blah this is blah how may I blah you?”
Yes hello, I’m a masshealth member and was told to-
“MA’AM, sorry. You have the wrong number let me re-route you to the main line..”
No no non! I just spoke to a pharmacist who told me to just let you know that-
“MA’AM we do NOT talk to masshealth members on this line. For any reason regardless of who told you to call.”
beeep. Beep. Beep. “Thank you, for calling masshealth, if you are a member press 1.”
So I hang up.
I try to call back my insurance now because I’m lost. I’m fucking lost. I need help.
An agent picks up, I ask her if I can give her my reference number.
“Hmmm. Nothing comes up. Do you remember the date of your call?”
Yeah. Today. Like. 15 minutes ago. Or less.
“I see that you spoke with Robert?”
Yes. Could you pass me along to him?
“He’s busy right now but I’ll take your number so that he can call you back?”
Here is the number to call me back.
“Great he’ll call.”
If he doesn’t, when should I call back to reinquire?
“Um, no more than an hour call back then if he doesn’t. But he should.”
Ok thank you.
I wait an hour. On the dot. I call.
“Our office hours are M-F 8-5”
The time is now 5:02.
Oh. You instructed me to call you…when you close……
And tomorrow night is my last dose of Xyrem before I am out……
The medicine they suggest if you do want to quit, that you wean yourself off of it……
And now, as I type this., crying like the loser I am, all I can think is…reminiscing on life recently before Xyrem….how long will it take before it all comes crashing back. Will it be immediate? How long until they finally cover the med that helps me live? Will it take a year again?
The land of the free and the home of the stupid.
“So leave.” They tell ya.
To which, it’s obvious they can’t read, listen or focus. Because if I could, I would. But it isn’t free to leave. It’s a process. A long one at that. You have no idea how sick I am. And how much harder that makes an already complicated process become.
But you don’t care. Because it’s not your sickness. That’s fair. Just know that I care, I care about your wellbeing. I care about your brain. I’m sorry our education system failed you. I’m sorry we live in a country that the norm is to fear and distrust your neighbor and assume everyone wants to leach off your check so that they can snort donuts.
Maybe I’ll get lucky, and this will all resolve in a week and only for a few days will I be extremely ill suffering withdrawals and in a mini coma unable to brush my own hair. But hey, I’m only 24! Clearly that counts for something. (Spoiler Alert: It doesn’t.)
INB4: “well have you seen the wait times in Canada?”
I have been the ER too many times to count in my life.
I don’t think a single time did I get in sooner than 4 hours of waiting.
And still have to pay like $250 copay lol fuck you.
I can’t even imagine (Actually, I can. But for my own sanity I try not to.) those that have it harder than me, with worse ailments that are my age. That don’t have a loved one holding your hand and asking you to please keep trying, and remind you that you are loved regardless.
I’m sorry. I’m so sorry.
The average person doesn’t get it. Truth be told even if they try they still won’t.
Sadly, there’s even some people in the same pit as me but wouldn’t have it any other way because they don’t KNOW of any other way, and change terrifies them.
Press 9 for more options.
There are none.
Well. Thoughts and Prayers! (Seriously, don’t bother.)