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bigskydreaming · 5 years

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In the best (personal) news I have had in oh, over a year, FINALLY got the results of the MRI back and it is NOT a tumor lurking in my nonexistent jaw joint area and causing all my Issues, as my doctor was worried about from the latest CT scans. Which, like. Yeah. I don’t really have the words for how grateful I am to hear that because like, hahahaha I was getting super tired of my rock bottoms introducing themselves to new rock bottoms, you know???

So I am currently buzzing and high on that news, life in general, and y’know, sleep deprivation, cuz ngl, it was definitely not fun hearing I should know by Monday whether or not like, I have cancer, only for that to be dragged out until freaking Friday. Hahaha what is sleep, I have had like, five hours all week maybe? Needless to say I am super behind again on work, rent, insurance and all that fun stuff BUT as long as I can say “but I don’t have cancer!” at the end of each of those things, like....yeah I’m gonna milk the fuck out of that qualifier for energy, as long as I possibly can lololol.

Did talk to my insurance ppl today though and I’ve got at least until Tuesday to pay my premiums, so got a couple more days of breathing room there. Can’t get it extended past that though because my doctor’s already gonna be calling in preauthorization requests for like, the actual surgery and stuff as early as Monday and I reeeeeally don’t want ‘okay but this dude hasn’t even paid up yet’ being a factor at all in whether or not they approve my 25K surgery.

Fingers crossed that my good luck continues to hold, as there’s a possibility this might all get dealt with once and for all, a lot sooner than I’d hoped for?? Like, cuz of the MRI she was able to get a clear view of exactly what the problem is, the inflammation around the joint and actual erosion of the bone, etc, which cut out a lot of the other steps we were preparing to take to isolate the exact issue before moving forward. It also apparently lit a hell of a fire under their asses cuz they were able to see not just that the joint is totally wrecked (which we’ve known for like, nine months now, wasn’t news), but just how badly eroded my jawbone is at like....the other point of the jaw that holds it at least somewhat connected to my skull still even though the joint itself is nonexistent? Idk not explaining that right because again, sleep deprived like whoa.

ANYWAY. Point is my doctor was like, so basically because of the constant damage being done in that area every time you open your mouth at all, you’re fracturing it further and its only hanging on by the barest sliver at this point - which, DUH, is exactly what I’ve been telling all these doctors it felt like, for over a year BUT I DIGRESS - so she’s all, yeah, we need to move this along as fast as possible because if you erode that area much more like, she doesn’t even know what that’ll look like in practice cuz she’s never actually had to deal with a case that bad, but reading between the lines it sounds like I would just not be able to close my mouth shut at all after that point, which....lol bye bye basic eating and talking? Idk. So its super fun being the worst case of this particular issue she’s ever seen personally haha yay me (but at least I don’t have cancer!)

So. Still putting it in the win column.

But yeah, so she found another surgeon that does potentially take insurance for the actual surgery costs, if we can get my insurance to approve it, and in the meanwhile now I gotta set up appointments at this OTHER imaging place for another more specific CT scan to measure how big the prosthetic will need to be, and they don’t take insurance there at all so that’s gonna be $600 no matter what. BUT, this new surgeon has a bunch of premade prosthetics they keep on site and so there’s a possibility they might be able to fit me with a premade prosthetic that’s already the right dimension instead of having to order a custom made one. And if I can get the surgery approved by my insurance and they find a premade that works, the surgery can be set up in as little as three weeks (which omg holy shit is that a light at the end of the tunnel, IT JUST FUCKING MIGHT BE crap I totally jinxed it didnt I fuck). If they can’t find a premade that works though it’ll still be the 4-6 months to make a custom one so, boooooo, we’re really hoping that doesn’t happen, cuz, again. I do not know precisely what several months of not being able to swing my jaw shut at all even lopsidedly and thus no eating or talking....like lmao what would that even look like how do you not like, starve in that case? Idk. So....super duper hoping that we can find a premade and get the surgery scheduled quicklikearabbit and not have to wait several more months and risk just eroding whatever it is that’s still up there in that general vicinity that’s left to erode, idk, like I said what are words right now even.

YEAH. SO. That’s my status update for those who’ve been messaging and checking in and whatnot, like, y’all are rockstars and I fucking adore you and am so grateful. I am now going to go sleep the sleep of the dead because hahahahahaha ow light is actually physically painful at the moment, I just came to sit up straight at my desk and I’m honestly feeling so attacked right now.

Then its back to work for me but also I might have some fic updates??? lol. Cuz of people who’ve donated and made non-imposing requests or suggestions for things I could write and thus mitigate my OMG I Do Not Deserve Your Generosity ulcers of doom. That I’ve been writing off and on but mostly just off this last week in particular where I unfortunately did a lot of like, staring at the wall watching paint dry except not really cuz they weren’t freshly painted or whatever, look you get what I mean probably.

Right. So. Assuming any of this makes sense to anyone and I’m not actually just stringing together nonsense series of words here at this point, still likely to be scarce for a few days to a week. Gonna leave my paypal link again, cuz I mean, yeah. I’m way more sick of posting it than anyone could possibly be of seeing my post it lolol, trust me, but hopefully there is a point now in the near(ish) future where I will once again be able to work productively and non-chronic-painfully again and thus not be in desperate need of the kindness of strangers 24/7. That would be so awesome omgwtfbbqicanteven. You don’t even know.

But also! At least I don’t have cancer. So. I actually have a bizarre amount of energy at the moment despite being two seconds away from faceplanting into my keyboard from exhaustion. Look I dont even get how that works either. I’m nuanced okay.

I feel like there was something to write here like in conclusion or in summation or tl;dr but also fuck it, I think I literally just heard my last remaining synapse fire in my brain I gtg ttyl byyyyyyyyyyyye.

https://paypal.me/bigskydreaming?locale.x=en_US

#i do the words so good #like omg look how good i do all the words

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the--social--anarchist · 5 years

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Sunday Sixx

1. My therapist and I spoke at length yesterday about my MRI results (cervical spinal stenosis) and she's going to ask around to her colleagues and see if anyone knows of any local Healthcare support programs that I'm unaware of. I doubt it. I've looked under every rock and tried all I could try. I’m an educated person (so educated I don’t qualify for disability - insert eye roll here- and I’ve spoken with hospital social workers, who literally knew less than I did, I’ve researched medicaid laws extensively and spoken with every local social security agency, plus I had a lawyer for my disability case, I tried for MONTHS to get into the free county clinic. All I’ve been able to qualify for, or at least what I’ve found, is the current hospital financial assistance program and a sliding scale clinic. Which is better than nothing, and I love my primary care doctor at the SS clinic but theres only so much she can do.

2. The pain/pressure is pretty awful today. I haven't taken any klonopin since my last big headache so I popped some before my extra long shower but am still only feeling mediocre at best. I even rotated ice on the head and heat on the neck. I doubt this shitty pain management office has assigned me a new doctor (my original one left the practice) which is why I haven’t received a phone call to discuss my MRI result. Calling them is on my Never Ending List of Shit To Do tomorrow. I’ve read reviews that the office in the town over is much for efficient and professional so I’m probably going to ask to be seen over there.

3. I had a few things to return to Michaels, and a top to return to TJ Maxx. I walked out with a new top, same brand as one I bought last year in a different color that I LOVE, along with two pairs of pants. I have been hunting for a pair of tapered black paper bag waist pants all summer and FINALLY fount some. I am in love with them. They even have pockets. The second pair is just a greyish plaid pair that are pant/legging (no pockets sadly) that will look super cute with a sweater - I couldn’t pass them for only $10.

4. I can’t tell if I’m just not used to the weight Missy has lost, or if shes still losing. It’s giving me major MAJOR anxiety. I’ve started to increase her food and may talk to her vet about switching to regular food (she’s been on diet food for the past 3+ years.) Again, she has given zero indication that anything is wrong. I’ve not noticed any urinary straining, and I don’t feel like shes over drinking anymore either. But, I have PTSD. My therapist is in the loop and we are going to start working on this topic to prepare me for the teeth cleaning Missy needs to have done in six months.

5. Speaking of dogs, and dog health, and anxiety - My mom came to me last night really upset and told me Linen (one of her boyfriends Chihuahas) has a nasty rash all over her belly. Guys... I’m a true crime fan, and I love crime scene photos and medical stuff... but this... omg. I have a phobia(?) of holes/patterns, mostly on skin. I didn’t let it be noticed but I swear to god I thought I was going to vomit and pass out. Guys it’s bad. It’s like a pimply rash, a few have blistered and popped. Oh my god, I feel so fucking bad for this dog. I gave her some Benadryl so at least it wouldn’t be itchy and maybe she could get some sleep but I definitely would have had her at the vet today. Of course he didn’t though. They went out today and I haven’t spoken with them or seen the dog (I mean shes in her kennel but I haven’t got a good look at her) but she definitely needs antibiotics. I feel so bad for these dogs. I know my dog is spoiled to shit but damn, at least give them medical treatment. They both had some bacterial infection a couple months ago with explosive diarrhea and it took 3 days before my mom convinced him to take them to the vet, and he only gave them like 3/14 days worth of their medication.

6. After 12 days my period finally ended. Honestly, that’s not a bad run for my body. 4 months no period, 12 days of period. And only maybe 5-7 of those days I was actually symptomatic. We’ll see if she comes around in another 4 months. But will say this birth control is fucking my skin up so bad. I’ll probably have a check in with my primary care in 6ish weeks and we may have to discuss using a different brand. Idk. I hate hormonal birth control. I have having a uterus that is never going to be used anyways.

#sunday six #daily blog #daily blogger #Chronic illness #chronic pain syndrome #spinal stenosis #cervical stenosis #mental health #ptsd #anxiety #dog mom #chronic fatigue syndrome #chronic illness blogger #postural orthostatic tachycardia syndrome

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braindamageforbeginners · 6 years

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More FAQ

So, before we go on to the main event, I did see my favorite (or maybe second or third favorite) oncologist recently for a check-up; Radiation Oncologist. My “Top Three” rating might seem like a slight, but I estimate I’ve probably had at least a dozen different oncologists and surgeons over the years (all of whom are, professionally, world-class). She gets bonus points for thinking of “Captain America” with my new hair, which is definitely the look I was going for. She also gave me a clean bill of health and made a later appointment, and mentioned that, usually, patients who make it a year get recommended for observation. Again, I don’t think the medical establishment is prepared for someone successfully completing surgery, radiation, and chemotherapy, then shouting, “What more ya got?!” Of course, by typing that, I’ve probably guaranteed I’ll get hit by a truck tomorrow. Anyway, unlike previous versions, this FAQ is actually inspired by questions I’ve received from various sources.

1. What is the ideal l reaction to you, as a cancer patient/survivor, when you tell people you have cancer? Ideally, that you have a proven cure for cancer. Or have ties to a research group working on that. If not buy me a beer and have a little patience with me if I’m a little slower or grumpier today. Again, if you are completely stumped, go for, “I’m so sorry. Is there anything I can do?” Or just show up with a pot-roast (never discount the June Cleaver approach). Really, there’s only two bad options here: indifference, or ostracizing the patient. That latter one might seem like an obvious no-no that anyone would know not to do, but, if you’ve ever not invited someone to an event or hike or whatever because you’re worried about their health, you’ve unwittingly participated. Just give us a call and we may come, or we may not. If all else fails, just send money. I know that might seem crass, but here’s the deal: the leading form of bankruptcy in the US is medical bankruptcy. It’s nigh-impossible to get back to a normal existence after something this disruptive; adding a tinge of deb-slavery makes it worse.

2. What’s Temodar really like?

Really horrible, surprisingly. You know who’s actually more-qualified to answer that than me? I mean, apart from an actual, qualified professional? Breast cancer patients. It’s not commonly given as a front-line drug, but if breast cancer starts metastasizing, I’ve heard it’s not unusual to add Temodar to the mix. Physically, it’s not too terrible - you’ll probably get constipated, but that’s usually treatable with OTC laxatives (or would be; I suffer from Unpredictable Bowel Syndcrome, so I usually reserve that sort of activity for quiet evenings at home, when I know my own bathroom is within reach). It’s painful, in a “whole body flu/hangover” kind of way, and it causes - in me and one other guy I know - weird insomnia. I’ve been able to kind of overcome both with medical marijuana, but you still don’t feel great. My main complaint with Temodar is “chemo brain’ - trouble focusing, or recalling details, etc. it’s a little too much like brain damage for me to ever be comfortable with. However, so far it’s not permanent, and it only seems to really hit the last few days of any cycle. However, it is disruptive enough that I don’t drive while on temodar, and I try to avoid any major life decisions or complex calculations or tasks.

3. With chemo/radiation, should I be worried about mouth sores, bleeding easily, or being immunocompromised?

Again, ask your doctor about that. I did and was told that as long as I washed my hands and avoided obviously sick people, I should be okay. Depending what chemo regimen you’re on, you’ll get blood-tested at various times. I trust the folks running me (as it were) to let me know the minute it looks like I might have a serious issue (one the nurses once got me a hand-out on potassium-rich foods when I tested low)(apparently, potato skins are better for potassium than bananas - who knew?), I’ve noticed I tend to bleed a little easier these days, but it’s hard to tell if that’s cancer treatment or me just being more aggressive shaving. Speaking of shaving, you’re not supposed to do that either, but, since one of the rarer side-effects of Temodar is leukemia (this is true), and one of the potential side-effects of radiation is,.. brain cancer (also true), I just decided the whole “Do this, don’t do that” list would become onerous and impossible to keep track of, and result in me living in a bubble (which would not only do nothing to help me in this struggle, and prevent me from making it to my book club). I’ve also been signed up for a number clinical trials (before anyone asks, all but two of those fell through; and I’m only in the marizomib trial and Radiation Oncologist’s neurocognitive evaluation program), and I know that - legally - the research coordinator (or nurse practitioner - I’m never really sure who gets that part of the job, unless it’s a form of administrative punishment or something) has to read to you all the potential side-effects of an experimental treatment. In the case of an experimental substance like Marizomib - which, remember, was still being tested for side effects when I signed on - that can take quite a whlle. In those situations where all the side-effects and dos and don’ts become overwhelming - which is more frequent than I’d admit - I’ve got your line: “I realize the side effects include lots of possibilities. I could die.This could make my disease worse. I could grow a third arm. But, of all the likeliest, dangerous side-effects, what are the ones I need to pay special attention to?” That usually trims a bit of fat off the safety warnings. My personal favorite in this area came when the Warlocks cleared me to go on Cycle 5 (that was kind of a big moment, because I’d had an iffy MRI before that one) SELF: Anything I should or shouldn’t do? Things I should stay away from? SENIOR WARLOCK: Yeah, lead a healthy life. He doesn’t strike me as a micromanager.

4. Should I wear a mask?

Why, yes, of course!

My apologies to BMT patients or others who really do have to wear a mask to maintain their health; If you’re in an doubt, though, ask your doctors about it, and, bear in mind that you’re never going to lead a risk-free life again, even if you beat this thing; you’re going to have to determine your new level of acceptable risk. Ultimately, I’ve decided that, at the moment, looking slightly closer to normal and not having extra things on my face to keep track of (especially since my left hand isn’t quite as dexterous as it used to be) was more important to me than potential airborne microbes or the risks thereof. I’ve heard one ER doctor claiming that we should all wear surgical masks whenever we’re in public (which, in retrospect, is an interesting stance coming from someone with a beard). With that in mind, I’d also point out something Shrink mentioned a few sessions ago; that if you physically hurt, yeah, you’re going to be inclined to stay in and avoid the gym or your friends, but your inactivity will make you feel worse. etc. It may seem like some sort of Dear Abby schlock, but it’s in keeping with the general attitude of most of the healthcare providers I’ve met around here; they want their patients living as close to a normal life as possible (Molly, if you’re reading this, I’d say that might be something to look for in rating hospitals; if they automatically an dramatically demand all in-patient treatments all the time, be wary).

5. Will my tastes change as treatment progresses?

I’ve heard this one a lot from various people without any clear consensus. I think this is a correlation/causation mistake. I’ve gotten more assertive and aggressive post-initial-treatment just because that’s a new requirement/skill to be alive, but I don’t think that’s because of the disease or treatment (well, possibly, the night is young and they still haven’t completely established Marizomib’s safety and side-effects). Similarly, it’s possible radiation or chemo will change your tastes and/or tastebuds (I’m fairly certain biochemists were still trying to definitively demonstrate how taste works, chemically, so it’s possible that dangerous, damaging substances would permanently change that). But I think, really, it’s that your body is a constantly-changing, hostile, alien warzone, and, just like any time you’re sick and you’re aware of it, it’ll have an impact on your tastes. Just like you may not leap at the thought of a cheeseburger and fries when you have a stomach flu, you’re not going to be one for brunch if you wake up with a queasy, hung-over sensation.

And then you bring human psychology into it and that adds a whole new layer of incalculable insanity to it. I remember exactly where I was when I had my TIA (or “ministroke,” if you want to get more technical); it was a little cafe by the hospital - perfectly nice place - and I had trouble (noticeable trouble) swallowing for a few minutes. I’ve taken a neuroanatomy class, so this set off a few alarm bells, but, since it went away almost immediately, I didn’t give it much more thought until the next scan showed that horrifying little dimple (it did turn out to be a TIA, which, given my obsession with cardiac health, is a barely-noticeable radiation side-effect). Nothing permanently terrible happened to me, and I know there’s no correlation between eating at that cafe and neurological disease, and I’d still recommend to anyone looking for a place to eat, but I’m not eating there ever again. And that might be the underpinning of this complaint about changing taste, there’s just a lot of potential for really, really bad, horrifying things to happen to you at any given moment of treatment. If I have an unexpected seizure while eating toast, I don’t know if I’d ever have toast again. For healthy people for whom this might seem ridiculous (as my step-mother did), let me put it this way. Let’s say you go to your favorite restaurant, and, completely randomly, get mugged and assaulted by a roving gang of GOP congressional candidates. Badly. Like, you need a night or two in the hospital and a month in a leg cast or something. Now, when you recover, even though you’re aware it’s all random chance and circumstantial, would you go back to the same restaurant? I still love steak burritos and beer, but nothing terrible’s happened to me while eating them (yet, anyway). That’s my guess, but there isn’t any hard data to support it.

#stupidcancer

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cadpadawan · 4 years

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A Black Winter Day 4 Years Ago...pt.1

Ok, now that I have the most pressing issues off my chest, maybe it's time to shed some light on the surreal chain of events, that changed my life quite drastically back in 2016. Those weird times pretty much account for why I needed to get re-educated in the ripe old age of +45.

Oh yes, I'm old as shit – there's no two ways about it.

Maybe this jovial stroll down the memory lane will also hint, why I ended up picking up the blogging pen, after years and years of absence from the blogosphere. I'm not really sure if anyone reads blogs anymore. I'd guess not. Everybody's just too busy posting duckface selfies in Instagram, or vlogging some utter bullshit about their day in YouTube. I think maybe a handful of sad boomers, like me, still occassionally follow the rare eloquently written blog, or even administer a blog of their own. I must confess: I might be a bit pre-occupied with the idea, that the human condition may be better contemplated in written form. Although, the extremes of that condition can be expressed quite evocatively via YouTube, too. Undoubtedly. Digital platforms offer modern solutions to recording, in full detail, how fucked up we really are.

Well, anyways...let's pretend for a moment, that blogging was cool, like it was 2005 again!

Was it really cool even then, I wonder?

In hindsight, it seems that the vast majority of blogs were pushing some corporate agenda, disguised as trendy lifestyle blogs, whose main initiative was to suggest, that in order to reach the ultimate boss-level of cool, you needed to eat certain full-vegan superfoods and support certain street-smart clothes brands, while exclusively listening to a bunch of generic indie disco-rock bands, that some washed-out, has-been, good-for-nothing celebrity had cherry-picked on behalf of some unheard-of indie label CEO.

Well, a monkey dressed in casual designer clothes is still a monkey.

The year 2005 was actually one of the turning points in my life. It was almost as if some cosmic nudge pushed my life into a downward spiral in 2005. It was one of the most emotionally ambiguous times in my life. I became a dad – which scared me shitless, and at the same time, made me the happiest person in the whole wide world, for a moment. Only six months later, I experienced a severe burnout due to sleep deprivation and excessive overtime at work – and at that time, I also experienced my first epileptic seizure. Though, at the time, I didn't have a clue what it was about. First, I thought it had something to do with the burnout. It probably did. I think the burnout triggered the first seizure. It happens. I later found out, that you can have an epileptic seizure due to a number of reasons, even if you are not diagnosed with epilepsy. The kind of seizures I started having on an irregular basis, for years to come, were not convulsive – so it was pretty easy to mistake them for something else completely: stress reaction and whatnot. You see, I worked as an express courier, which qualifies as a high-stress job – hands down. I worked long hours, played in at least two active rock outfits at the same time for years on the side, tried to spend quality time with my new family...

In retrospect, I wonder now: when the hell did I have the time to get any sleep during the years 2005-2016?!?

No wonder, my memory is full of holes, concerning that time. It's all just one big hazy blur. I kind of lost the most part of those 11 years. Yeah, I unlocked all kinds of life achievements – mortgage, a son and a daughter, various music-related things – but I guess I was so busy burning my candle at both ends, that I never stopped for a second to appreciate all the little things in my life – and now I can't remember shit.

Of course, it also had something to do with my epilepsy. Any type of epileptic seizure may potentially affect the memory, either during or after the seizure. If you experience frequent seizures, memory problems are more likely to occur. Eventually, when I finally consulted a doctor and started keeping a seizure journal in the early 2016, I used to have 10-15 seizures a week, sometimes 3-4 times a day. My seizures were of the focal type that affected only part of my brain – the temporal lobe, to be exact. Abnormalities in that region are the most common reason for memory problems in people with epilepsy. One common trigger for a seizure is lack of sleep.

Focal epilepsy is a neurological condition, in which the predominant symptom is recurring seizures that affect one hemisphere of the brain. Temporal lobe epilepsy (TLE) means that the seizure starts in one of the other of the temporal lobes. My symptoms included: feelings of strong deja vu, and a rising sensation in my stomach – the so-called epigastric aura that resulted in an impromptu vomiting first few times. Most seizures were brief, lasting only few seconds – until in 2015, almost 10 years after the first episodes, I had a seizure that lasted for minutes – my first jamais vu-experience.

In psychology, jamais vu refers to the phenomenon of experiencing a situation that you recognize in some fashion, but nevertheless seems very unfamiliar – the opposite of deja vu, so to speak. It involves a sense of eeriness and the impression of seeing something for the first time, despite rationally knowing it cannot be true. In my case, it meant getting lost on my way home from the local supermarket, as if having been sucked into a sudden dementia simulation. I was driving home from the grocery store, the usual route that I had been driving for the previous eight years so far. At some point, I felt the usual signs of the epigastric aura – that slightly nauseating sensation rising in my stomach. It predicted a seizure. I was pretty accustomed to having those every now and then. Nothing to it. It usually didn't affect my ability to drive a car in the slightest. Heck, I had been driving a van for a living for years with this little nuisance. It didn't worry me one bit. It usually lasted for a few seconds, and then it was gone. An epileptic seizure is basically a disruption of the electrical communication between neurons in the brain – an uncontrolled burst of electricity. That pretty much sums up how it usually felt: a burst of something inside my head, fluctuating like a liquid for a few seconds. It felt pretty fucking weird. So, there I was, coming home from the grocery store, blasting metal in my car stereos. Then, the stomach thingy, something sparkling in my head for a moment...I guess I didn't really pay much attention to the seizure. Maybe there was some kick-ass song playing on the radio. I probably didn't realize, that the seizure had already lasted way longer then ever before. I came to a T-junction. Suddenly, I didn't have the slightest clue where the fuck I was! I was less than one kilometer from home. I turned right. Then my wife burst out wondering, what the actual fuck I was fooling around for. I should've turned left. I grinned back, as if this manouver was some spur-of-the-moment prank. I made a U-turn, and soon I was back at the same T-junction. This time I was supposed to drive straight. Guess what?

I didn't. I turned left this time.

My wife suggested, that i should maybe go and see a doctor...

Nah, I decided to wait six more months. Why not wait until I fucked up my life to a point of no return, before going to see a doctor? It became increasingly obvious, that I was in for a major life changing event. Was I subconsciously sabotaging my life, in order not to feel tempted to go back to the old ways, when the shit finally hit the fan? In April 2016, I was diagnosed with a benign tumour in the brain, which was the reason for my epileptic seizures. In the meantime, between my epic jamais vu-experience and the MRI scan that revealed that alien implant attached to the hippocampus in the right temporal lobe of my brain, I managed to fuck everything up in the most beautiful and thorough way you could imagine: my job, my marriage, everything...as if I was laying down the foundation for the oncoming midlife crisis the best I could. Well, being some sort of an artistic personality type, I can handle chaos much better than the average person. Although, I never deliberately looked for chaos, and never actually wanted to stare into the abyss, it seems that the chaos looked for me, to stare me into the eye.

I can tell you a story...

It all started on a black winter day, January or February 2016.

(To be continued...)

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ultimatestudyabroad · 4 years

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Health Insurance: Adding Insult to Injury

Not only have I been unemployed and homeless since I arrived back in America, but I’ve also not had any health insurance. So, on top of worrying about how long I can make my money stretch and stressing about whether anyone will ever hire me, I’ve had this nagging voice in the back of my head: You’d better not get sick, Mel. You’d better not need a prescription filled, Mel. Don’t go ice skating with your friend, Mel. If you break your ankle, you don’t have health insurance.

I feel the need to pause here and clarify for my Australian friends: no health insurance = no health cover of any kind. This isn’t a “I don’t have private insurance, but Medicare still covers me” situation. (Note: universal health care in Australia is called “Medicare” whereas “Medicare” in the U.S. is primarily for the elderly – this can admittedly get confusing). In the United States, if you don’t have a job, you don’t have health insurance (unless you buy it yourself, but we’ll get to that). There is no automatic social safety net.

When I was younger, I would simply take the risk of not having insurance in between jobs. In retrospect, I was lucky nothing serious happened. But now, I’m older, wiser, and only two years away from the age my mom was when she was diagnosed with breast cancer, so no insurance is no longer a risk I’m willing to take. Before I left Australia, I tried to figure out how to get some insurance until I get a job. I didn’t have much luck. Because here’s another oddity in America: you can only buy/make changes to your health insurance at certain times of year, the “open enrollment period.” There are exceptions to that, of course, for major “life events” like getting married, etc. and it turns out that returning from living abroad is one of them. However, outside the open enrollment period, options are scarce. They are also tied to the state you live in and I wasn’t sure where I was going to live! The only plans I could find were so expensive and so crappy that I decided against buying “real” insurance and instead obtained emergency cover through a travel insurance plan for expats returning from abroad. I figured I just needed something to cover me in case I was in a car accident or I needed an emergency appendectomy or something like that. I figured I’d only need it a few months and then I’d have a job (hahahahaha, joke was on me). I bought the plan and extended it once. Then open enrollment hit and I still didn’t have a job, so I knew I needed to bite the bullet and get some health insurance.

Some of my friends in Australia assumed that Obamacare gave all Americans health insurance and I had to explain to them that it merely required us all to have insurance; it didn’t give us anything. It did add some regulations to make our health insurance plans suck less and it created the marketplace, a website where individuals could go purchase their own health insurance if they didn’t have any through work. And this is where I went to buy my insurance plan, an eye-opening experience. I entered in some demographic information and where I lived so that the system could identify plans I was eligible for. I got to a screen that asked for my anticipated 2020 income. I entered “$0.” I mean, the whole reason I have to go through this is that I’m unemployed! In return, I got the message that, based on my answer, I do not qualify for subsidies to help cover the cost of my insurance. What?! How can someone with no income not qualify for the assistance the law provides for the insurance the law requires people to have? Oh well. I wasn’t terribly surprised by this. I’d already made weak attempts to see if I could qualify for any kind of social welfare program. Unemployment? Nope. Medicaid? Nope. For food stamps, I was at least asked to provide some additional information, but after that, I never got any kind of response…

Anyway, I cursed the heavens and clicked through to see my plan options. Words cannot express how shit these plans were. As I report on this, bear in mind that I am a healthy, non-smoker with no pre-existing conditions. Plans that were affordable – around $250-300 a month – had deductibles upwards of $8,000! Meaning, I would need to utilize $8,000 worth of medical services before my insurance would kick in. Now, I neither intend to need $8,000 worth of medical services nor do I have $8,000 to spend on medical services. Some of the more affordable plans also had no cap to the out-of-pocket expense. For example, if once I had met my $8,000 deductible, I ended up in the emergency room, I’d still be responsible for, say 50%, of the total cost. For other kinds of treatment, insurance might pay 80% and I’d be responsible for 20% (again, this is all after I’ve met my deductible). Two things make these kind of plans a very bad idea. First, as I mentioned, I have a family history of breast cancer. My boobies are most likely going to turn on me one day. I don’t just need insurance; I need cancer-quality insurance. This fact was vividly driven home to me in the month before I went on the marketplace, when two people I care about were diagnosed with breast cancer. Crappy insurance is not an option for me.

Secondly, health care in America is expensive. How expensive, you ask? Check out this thread of responses from when Bernie asked the same question. From personal experience, I’ll give one example. Before I moved to Australia, I’d been having annual breast MRIs as part of my preventative care. My GP in Australia wanted me to continue that type of screening, but warned me that my overseas student health cover (basically, the equivalent of Medicare) didn’t cover MRIs. I immediately refused the test and we got in a bit of a spat over why I was refusing her recommendation. I told her I could not possibly afford an MRI out of pocket. We went back and forth a few times before she finally looked up the price: $500. FIVE HUNDRED DOLLARS FOR AN MRI! The total cost of this test in the U.S. is $3,000-4,000. I told her that. She almost fell out of her chair. This kind of experience happened to me several times in Australia. I’d be having a disagreement with someone on health care and there’d be this sense that neither one of us really knew why we were so opposed to each other and the reason turned out to be that we were operating from two completely different frames of reference. To close the story, I had my MRI (and my OSHC surprisingly ended up covering it! This – paying less than what you think you’re going to have to pay -- is something that never happens in America!)

But back to the Marketplace. I ended up choosing a plan that had an out-of-pocket maximum. I’m not interested in going bankrupt because of medical bills. I also chose a plan with $0 deductible because the difference in cost between low-deductible and no-deductible plans was fairly negligible. So, my plan isn’t that bad (or, I should say, it doesn’t seem to be. We’ll find out when I actually try to use it). What’s this costing me, you might be wondering? $580 a month! Please recall that my income is currently $0. I do not have $580 a month, which is only $139 less than what my mortgage was before I sold my house! Americans reading this are most likely thinking, “yeah, that sounds about right” whereas my Australian friends are probably a little shell-shocked.

To give my American friends some context … When I moved to Australia, in order to get my student visa, I had to pay for 46 months (the duration of my visa) worth of health cover up front. At the cost of my new American health insurance plan, that would have amounted to almost $27,000. Instead, I paid $1,893.12! That’s just over $40 a month. And for that, I got amazing health care. I went to my GP all the time because it was so easy and it was free. The only time I ever had to pay was $35 for a blood test that wasn’t fully covered (and I got part of that back from my insurance within a WEEK of submitting a claim!) My OSHC didn’t cover prescriptions or routine dental, but both of those things were cheaper fully out of pocket than they are in America with insurance. I once had to take an American study abroad student (who had no Australian health insurance) to the equivalent of urgent care for strep throat. He waited less than five minutes without an appointment (can’t remember the last time I waited less than 20 minutes in the U.S. even with an appointment). He paid $50 for the visit and $10 for his antibiotic with – I repeat – no insurance.

I listen to the Medicare for All debates in the Democratic primary and my first reaction is to be completely flummoxed that anyone (other than a health insurance executive) could be against it. But upon further reflection, I think that Americans are just so used to being screwed by their health insurance that they find it hard to conceive of an existence in which they are not. We are so conditioned by the structures that run our lives that a functioning system seems fanciful. Once I got to Australia, it took me some time to believe. During pretty much every encounter with the Australian health care system, I was confused/surprised/skeptical that it really was that easy/quick/cheap. Now that I’m back, I’m equal parts a) dreading the reverse culture shock that will occur when I need to go to a doctor and b) pissed off that the “richest country on earth” extracts so much profit from the health of its citizens. So to my fellow Americans I say: support universal, single-payer health care! Trust me, you’ll love it.

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