Posts Tagged ‘medical issues

03
Sep
20

Doctor Hate, mk 2

So, after being subjected to a surprise sleep study, the results came back. To no one’s surprise, except apparently my doctor’s, I have severe sleep apnea.

Well, no shit, Sherlock.

The doctor then, rather than accepting the results, mandated that I do an inpatient sleep study. So I get to go somewhere, sleep in someone else’s bed with a bunch of wires strapped to me, so they can confirm the results because, in his words, “sometimes things are a little different at home.”

In other words, he thinks I rigged it and is checking for trickery. At least, that’s how I took it. Meanwhile I’m sitting here wheezing and thinking to myself “just prescribe the goddamn C-PAP machine already, dickhole.”

I’m so tired of this crap. Playing doctor roulette is getting exhausting, and going through the same battery of tests every time – I also get to redo my allergy needles and spirometry – so they can hit the same brick wall, scratch their head and decide I’m lying or they don’t know is infuriating.

Sorry for the less than positive post. I’ll try to be cheerier tomorrow.

26
Aug
20

Take a Breath

Take a deep breath. Hold it in. Let it out nice and slow. Now do it again. Once more.

Feels good, doesn’t it? I hope so, but I wouldn’t know for sure. I can’t do that anymore and haven’t been able to for nearly three years.

I have severe asthma, bordering on COPD, and my condition has been degrading steadily over the last few years. It’s gotten to the point where nearly any exertion, even something as simple as brewing a pot of coffee or taking a shower, leaves me heaving and struggling for breath. I frequently have to use a nebulizer just to attend a doctor’s appointment and generally am so exhausted and weakened afterwards that I end up having to sleep the rest of the day.

I miss being able to step outside just after the rain and breathe deep, feeling that beautiful, damp air slide through my body. I miss being able to stop by the game shop and have a chat about what’s coming up. I miss going to my job, helping people, training others, and socializing with the great friends I had there.

There’s something that may help; it’s called a bronchoplasty. Essentially, they want to shove tiny laser beams down my throat and burn away the parts of my lungs that aren’t working right. Very sci-fi. They tell me this may help, that while it may not remove all my symptoms, it will at least hopefully lessen them to the point where I can take a deep breath once in a while, or go back to work.

Problem is, it’s not cheap and the insurance I have won’t cover it. Being away from my job for almost three years has murdered what credit rating I used to have, cancelled the semi-decent insurance that my work provided, and left me clinging to a state health plan that barely covers my meds, let alone something like major surgery.

I do what I can, trying to bring in some income. I don’t just sleep all day. I write, I blog, I try to stream when I’m feeling well enough and can manage to talk for more than five minutes without a severe coughing fit or fainting spell hitting me. None of them pay the bills, let alone build up enough of a nest egg to get what I need, but at least they pass the time and sometimes can buy a sandwich.

That’s where this comes in. I’m throwing myself on the mercy of the masses. For those of you who have the fortunate position of being able to take a deep breath without pain or fear, just think about what it would feel like to have that taken away… and consider if that is worth your mercy. If not, I understand. Times are crazy and tough for everyone these days. But it’d sure help.

The amount listed for the campaign covers the approximately $15,000 worth of surgery and includes a $5,000 buffer for aftercare and living expenses while I recover. I know it’s a lot. I wish it was less, and that I didn’t have to ask. But it is what it is.

That’s all there is to say, I guess.

Take a deep breath. Be thankful you can. Consider helping someone else do the same. Thank you for your time.

The campaign can be found here.

13
Nov
19

Doctor Drama

Nothing much to report today; work continues on Chrysanthemum Graves, though at a snail’s pace. I think I’ll have a chunk I feel like sharing tomorrow, or maybe Friday, so if you’re into that sort of thing, feel free to check back then.

Today is a medical day, though. Three different doctors in two different cities who are going to poke and prod me and likely leave me exactly as I entered with the exception of less room on the credit card after paying the three different $80 co-pays. Getting really sick of going to these. But if I don’t go, my employer and the folks at disability assume “oh, he’s fine now, no need to worry.” Never mind the back pay they should have dealt out months ago, but they’ll definitely put a hold on anything forthcoming. So I keep going to the doctors, who keep telling me the same thing, and they keep dragging their heels.

I am so utterly sick of dealing with medical personnel and all the associated extensions it requires. This should be very simple. Send one human with a brain to my house and watch me try to do chores for an hour or two. Do a two-hour phone call. Discover “wow, he’s fucked up!” Sign off on form that says “Wow, he’s fucked up!” Send a second person to echo that sentiment. Be done.

But no. Six doctors, a year, and having to call every single day because they can’t be bothered or trusted to return my calls or call me back. The latest on that one is my employer called me yesterday to ask if I had my original rejection letter. This is the first I’ve heard from them since two weeks ago when I finally got through to a third-tier supervisor and manually sent all the info to him. I told them “Um. No. I’ve had to move, and I have roughly a crate’s worth of medical records, so I’m not sure where that would be at the moment.” They inform me they’re going to have to pull it from their records, then.

They’re damn fast about finding paperwork when it’s something that supports them telling me to go pound sand, but apparently, it’ll take them a week to find a document they sent to me, that should be in my damn file. Ugh.

Anyway. Off to the doctor’s. Send chicken. Or drug money. If you feel like doing either, you can stop by my Patreon or GoFundMe. Everything helps.

Until next time, folks.

KA Spiral no signature

 

02
Oct
19

“Do you have an appointment?”

That’s a phrase I’m getting really sick of hearing. The answer is generally “no, because that’s what I’m calling to schedule.” The scheduler will then inform me that they have nothing open until March or some other ridiculous timeframe, and frequently add that “they don’t schedule that far out, so call when it’s closer to that time.”

Here’s the situation: I haven’t been able to work for almost a year. I’m on medical leave because my GP at least gave me a note for that, but my work’s disability folks and the SSA don’t think his word is sufficient for any kind of payout, temporary or otherwise. So I got a referral to a pulmonologist. He wanted to cut on me, swapped one med, and then couldn’t be bothered to see me for three month periods. He wouldn’t fill out any disability paperwork because he didn’t feel he had enough knowledge of my case, but couldn’t be bothered to see me in anything resembling a timely fashion so he could learn about it.

The local physical therapy folks don’t do the tests that are apparently required to show that I can’t breathe or move around well enough to sustain activity for 8 hour periods. So they referred me to someone else, who couldn’t see me for two months and wanted an $800 deposit to do the tests. That’s after insurance. Then they turned around and said they don’t do the tests I need, I need to talk to someone else.

So I get a new pulmonologist. She’s on the ball. She sees me two days after I call her, plays roulette with the meds, orders referrals to two places that will do the tests I need, schedules to see me again in two weeks, actually acts like she cares. Her documentation isn’t sufficient for that the disability/SSA folks need, either.

Call one of the places to schedule, they say they didn’t get the referral. Call the pulmonologist, she confirms she sent it, confirms all the info. Call back the PT place, they say “We have that. We’re waiting for insurance to confirm. Call back in two weeks.”

Call the other place – and apparently, I need both – and get danced with for three weeks with them before they finally find a “possible” opening in December. I have to be in Portland (which will be a 2 hour drive for me), skip my meds, no eating, no drinking anything but water for 24 hours prior and be prepared to spend six hours being subjected to strenuous physical activity to see how much it takes to break me… on a “possibility.” They can’t guarantee they can see me that day, but I need to be there in case they can. Otherwise, I’m out of luck until March.

Still waiting to hear about the first place. Disability doesn’t care; they’re of the opinion that “you’ve been messed up for this long, someone should be able to sign off on it.” You’d think so, but even having them on the line with the scheduling folks doesn’t change their minds or at least give me a grace period.

I’m not sitting here staring at the walls and doing nothing. I’m stuck at the mercy of the medical system. I spend hours on the road, shuttling between Salem, Albany, Corvallis and Portland and paying out the ass at every stop so they can tell me to wait longer or talk to someone else, and the net result overall is most of them want to cut on me (even though none of them will sign off and say “he’s broken, we want to chop him up and try to fix him, but no guarantees,” in a goddamn state where you can skip your vaccines because little Timmy doesn’t do shots on a day that ends in “Y” and where potheads and meth addicts can get treatment for free and immediately for problems of their own manufacture.)

It’s exhausting. And expensive. And my insurance is about to be canceled, my credit is completely shot, I’ve pawned everything I own that has any value (unless I really want the $20 I’ve been offered for my PS4, which will buy me some Popeye’s and refill my antidepressants, but not much else.) And I am just so done with all of it.

I don’t know why I keep trying; it seems like everything these days is rigged against you when you try to follow the rules and do things the right way. If you want to play lets-pretend, the identity game, or ignore law and order, you get a lot farther it seems like.

Anyway. Back to waiting on hold. Sorry for the depressing post. If you can help keep me afloat while the doctors sort it out, it’d be appreciated; I have a Patreon as well as a GoFundMe. If you can drop a dime or even just share the links around, it’d be super helpful.

As I’m fond of saying lately: Hold the thoughts and prayers. Send chicken. Popeye’s #3, Spicy with Coke and Mashed Potatoes.

KA Spiral no signature

21
Sep
19

Guinea Piggin’

Apparently, I get to be a guinea pig for an ailment tracker. This should be exciting.

The short version is that any time I have a noticeable change in symptoms relating to my asthma, depression, schizophrenia, migraines or what have you, I’m supposed to log all details relating to the incident. Time, day, weather, circumstances, severity, duration, cross-correlation with other issues if any, etc. Then I send it all off to la la land, where they collate it and cross-reference it with other people doing the same thing, and somehow that’ll help people who have similar problems that while chronic are not always at peak presence and tend to fluctuate.

I don’t know how this will benefit me in the long run, but it’s an amusing exercise, at least. Gives me something to do while I wait for symptoms to subside so that I can do anything that I actually want to or should be doing.

I suppose it won’t be helpful if I just draw a black line through every day and write “blah” on it, though that’s tempting. It’s about how I feel.

Send chicken.

KA Spiral no signature

25
Aug
19

Who needs lungs, anyway?

Not me, apparently. The doctors are… charming… individuals. They have decided that they have problems in good faith as marking me as actually having a problem because I am capable of blowing into a tube really hard.

This is called spirometry. If you’re lucky enough to have not had to do this, what it entails is they shove a tube in your mouth, tell you to breathe normally for a few seconds, then take as deep a breath as you can before blowing it out as hard and long as you can.

I apparently test very well in this department. The fact that it hurts like a bitch to draw that breath, and that I see stars, almost faint, or go into 2 minute long coughing fits after doing it is apparently irrelevant to the results. They normally do this three times, but had to do it seven for me, because two of the results were “not good enough” (couldn’t blow hard enough for it to register) and two more were interrupted by coughing fits while I was trying to blow.

But yeah, no, nothing wrong here, right?

They say my weight is likely to have something to do with the problem, neglecting that I used to be 260 pounds (which, at 6 foot 5, isn’t all that hefty) but have put on 40 pounds in the last year, primarily due to a sedentary lifestyle in attempts to avoid as many asthma attacks and coughing spasms as I can. Also neglecting they upped my antidepressants (for all the good they do me lately), which can have a negative impact on weight. It’s almost like the problems caused the weight gain, not the other way around, but hey, what do I know? (I mean, aside from having been exposed to medical texts since a young age and at one point having aspirations of being in the psychiatric field, which required med classes…)

They have done multiple X-rays of my chest, and have me scheduled for a CAT scan, an EEG and an EKG. Who knows what any of that will show, though at this point I suspect they’ll say “Well, looks fine, as long as you lie perfectly still, don’t talk, and have doubled up on all your meds in preparation for surviving the two hours of driving and six hours of poking and prodding we’re going to do.” Neglecting that perhaps the problem is that I have to sit still, not talk, and double down on meds to do anything more strenuous than walking to the bathroom.

The shrinks have yet to weigh in on anything, as they apparently think leaving a schizophrenic with bipolar depression who’s having all kinds of other medical problems and is bloody miserable to swing in the wind for months while they “figure out” when the doctor can see them is totally okay. But don’t worry, they sent me to a therapist.

I am about 99% certain my problems are not relating to anything a therapist can help with. I’m well aware of the historical and current stressors on my mental state and am quite capable of dealing with them on my own. I doubt they’re going so say “well, have you thought of it like this” and a magic lightbulb will go on and I will be healed. Fairly certain my mental issues are chemically related, need a tweak to my meds, and are being exacerbated by external stressors, not created by them.

The doctor also tells me I need church. I neglected to point out that I was sent to Catholic school for a chunk of my childhood, followed by LDS doctrine up through high school and had Jehovah’s Witnesses try to recruit me, all without having any real relief from my problems, medical or otherwise, while piling on more guilt, shame, self-loathing and abuse. I don’t think Jesus is going to kiss my boo-boos. (Or Allah, Buddha, Krishna, Vetala, Shiva, Satan, Lucifer, Odin, Baal, the Green Man, Zeus, the Horned God, aliens, the Flying Spaghetti Monster or any other higher or lower power you may or may not subscribe to.)

Then to top it off, I got slapped yesterday with a summons. I’m being sued in Small Claims Court over $500 of medical bills. Yay.

I wouldn’t consider myself suicidal – I am far too afraid of what afterlife may await, or the possibility that I’m already in it, to take the plunge – but I won’t deny that every day the sharp objects look a little more appealing and the urge to even crawl out of bed looks more pointless.

Anyway. Sorry for the depressing post; just needed to vent a bit. Hopefully we’ll have some more of Dr. Gale tomorrow.

As always, if you think you can help out, my Patreon is right here, and if you want to contribute to the surgery/medical/staying alive until I can fix this fund over on GoFundMe, it’s right here. Never required, but always appreciated, and even if you can’t donate, a share helps, too. Thanks to everyone who already has, and again, no guilt if you can’t or won’t.

Take care, everybody.

KA Spiral no signature

22
Aug
19

Doctors are Evil

I am wiped the hell out after today’s doctoral adventures, so this will be short and bitchy.

  • I just want to say: it is ridiculous that I have to play pinball with five different doctors, all of whom are pointing fingers at each other for who needs to fill out paperwork so my employer knows I’m borked and they’re trying to fix me. On top of spending all day without my meds or eating and being subjected to spirometry, which is a miserable experience as I’m sure anyone who’s dealt with it knows. CAT scan and EEG next week. Hooray.
  • Anyway. Sorry for nothing exciting today. Hope everyone is well.
  • 23
    Sep
    18

    Keeping Boats Afloat

    “Whatever floats your boat.” It’s a phrase I’m fond of, for no particular reason. It’s frequently spoken slightly dismissively, usually in relation to a habit or endeavor that evokes little or no emotional response in myself but that seems of interest or import to another. Doubly so if it’s an interest or important subject that I don’t understand why it’s important.

    Everybody’s out there just doing their thing, living their lives. Frequently the things going on in one person’s life are of no relevance to another. That’s how we get along; doing our best to keep our own boats floating without crashing into someone else’s or letting them ship water onto ours to save their own.

    Maybe I’m going too far with the analogy. Oh well.

    There’s going to be some whining and begging here, so you are free to skip with no hard feelings. I’m doing my best to get more content up, which isn’t always easy for reasons we’ll delve into in a moment, but hopefully there’ll be some more stuff for fiction, gaming or general horror fans soon.

    I’ve had a lot of health problems this year. Severe jaw infection, pneumonia twice, strep, mold infection in the lungs, severe asthmatic beatdown from multiple forest fires, poisoned by algae in the water supply, constant fights with depression, schizophrenia and bipolar disorder and now the potential of autism rearing its head. I’m a bloody mess.

    None of those things help with writing, obviously; worse, they make it hard if not occasionally impossible to work, which means no money, which means no meds, which exacerbates the problem, compounding it exponentially.

    To continue the above metaphor, the boat is springing leaks faster than I can find corks and bail water; drowning becomes an ever-more-realistic prospect… in a more literal way than one would like, given the penchant for lung problems I possess.

    So, anyway. That’s why you haven’t seen much of me lately; I’m either lying on the couch staring at a visual novel while hooked up to a nebulizer or scrambling in brief periods of wellness to try to catch up or sleeping off the latest cocktail of medications that will supposedly fix me “any day now.”

    I need help. (“So what?” I hear you say, “So does everyone!” I hear you shout.) So I turn here, where there are supposedly roughly 400 people who pay at least some attention to the things I say and do.

    First, to each of you that reads this blog, pays attention to my Tweets, watches my videos or has bought or read my books, thank you. Intellectual and moral support by way of the idea that someone, somewhere is paying attention and may even like my stuff matters. Keep at it.

    To those of you who’ve been in bad places and crawled out, or take pity on those who are sitting in their mental and physical caves somewhere despite not having been there themselves, or those who’ve drawn some entertainment or inspiration from the things I’ve done, thank you.

    To all of them (and anyone not already covered who happens to read this) give me a moment of your time; I have a GoFundMe and a Patreon, both of which are there to help me keep paying for my meds and keep the lights on in those periods where I can’t work. If you feel like it, you can drop by and drop something in the bucket. Doesn’t matter if it’s a dime or a thousand, it’s appreciated and helps. But don’t think this is just a begging drive; sure, cash is great, but there’s less physical ways to show that what I do matters to someone.

    A like. A share. A “keep at it, bro” e-mail or Tweet. Something to show that I’m not beating my head against a wall in the hopes that the concrete cracks before my skull and shouldn’t just throw my hands up in the air and walk away or let myself go down with the ship.

    Okay, I’m done whinging for now. For those more interested in “real” content, I should have the second chunk of “Three Blue Hearts” up during the coming week, and I’m trying to put something together for Halloween – might be a stream of Death Mark or Call of Cthulhu, might be a livechat, might be something else, suggestions are welcome.

    That’s all for now. And don’t forget, go hug your favorite artist or mentally ill person (or both) today. They probably need it.




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