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awheckery · 1 year

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I need some help

so. this is hard. here goes:

for the last six-ish weeks, I've had an exceptionally challenging time of things re: my haunted devil body being exceptionally haunted and full of devils, and I have missed a lot of work. a lot of work. might be losing my job soon, in fact, but I'm trying not to think about that.

I'm trying to crawl my way out of the hole, but I have nothing in the bank right now and no money coming in, literally this is a screenshot of my account from today, and it's not showing the insurance payment that put me $50 in the negative this morning.

I have no other savings, my credit card's maxed out, I don't know how I'm going to pay my upcoming rent and my cupboard's down to baking ingredients and canned vegetables, so the sitch is looking pretty gd grim for me right now.

if anyone wants to donate and can afford to be kind, I'm linking my paypal and cashapp below, but I'd prefer to be able to offer something in exchange.

I think most y'all are following me because it is known that I make quilts, but that's mostly a side effect of my true hobby: collecting fabric. (this is a joke. mostly.)

I don't know that I have the energy to commit to making quilts or other complicated goods right now, but I do have a truly massive stash and excellent color sense. I've pulled these curated fat quarter collections as examples of what I have on offer:

this is a very small sample of what I have in my stash; I've been collecting fabrics since 2014, so I have a massive collection of rare & out-of-print fabrics from Moda, Free Spirit, Windham, RKaufman and other brands, a portion of which I've catalogued and uploaded to gdrive here.

that's nowhere near my full collection, it's just a jumping off point of what I've got to work with. I'd put fq bundles on etsy or something similar to make it easier, but the total lack of funds has temporarily kiboshed that idea.

in the meantime, I'm selling individual fat quarters for $2.50 each and curated stash-builder sets of five like the ones above for $15. I'd also be happy to make coordinating pot holders not unlike this one at $35 for a pair.

(pls don't ask me for oven mitts, I don't want to talk about one of my greatest failures)

NOTE: all fabric comes from a smoke, pet and fragrance-free environment, and will not be prewashed. I know that makes a difference to a lot of folks, not just me.

I'm also open to assembling pre-cut quilt & other craft kits, PM me to discuss what you're looking to make and I'll figure out if I can make it happen for you.

I appreciate any and all help more than I have words to communicate, and I know I'm pretty damn wordy! I'm pretty far down in the weeds at the moment, and I need to raise around $1800 in the next ten days in order to pay rent, catch up on my bills and pay for food and medication.

please help out a chronically ill artist and shop my stash!

cashapp

paypal

#help needed #signal boost #idek how to tag this #fabric destash #I guess?#I cannot overstate how much more awesome stuff I have than is listed in gdrive #that's just the fabric I had at least a yard of #(and had enough of the selvage to record the name and designer)#I also have a ton of unbranded fq's and yardage from joann's #idk how but I'll try to find a way to work some of that into the stash library #it's shockingly hard to photograph fabric tbh #quilting hell #sufferpunk life

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awheckery · 1 year

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tonight I'm all about those

mental health crisis mozzarella sticks

#I made them from scratch and they were a pain in the ass #nothing says a great time like acknowledging the weight of all the horrors at once #by which I mean:#being forced to acknowledge the weight of all the horrors at once #I tried to make a list of Reasons I Can't Leave My Apartment and started shaking violently #so that was great #tbh this was kind of overdue #the last three years have combined the worst parts of 2006 & 2012 & 2015 #I was handling shit too well and I recognize in retrospect that was suspicious #food cw #sufferpunk life

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awheckery · 2 years

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#I am so gd frustrated #my wonderful SIL & brother are having a halloween party #and I really wanted to go #but I'm rolling into my third week of respiratory misery #I'm so tired of coughing and I'm TIRED of my head and throat hurting #and I am so gd tired of my body cancelling events that I was excited to attend #I'm fucking sick of it #sufferpunk life #stupid haunted devil body

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awheckery · 2 years

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HAVIN A WEIRD ONE, Y’ALL

cut for discussion of chronic illness treatment and weird medication effects; as has been previously established, my body is a horror show, but this is odd even for me

two months ago I crawled into the office to see my wonderful new rheumatologist because I was having An Bad Time, and it turned out I’m one of the unfortunate folks for whom Plaquenil is not a feasible treatment option - it was doing an all right job of mostly keeping my immune system in check buuuuuuuut it was tearing up my insides so much it was tanking my quality of life

(I was also coming off a brutal six weeks of asthma flareup chased by maybe-covid chased by respiratory infection. this year has been non-optimal for me, healthwise)

at that time, my doc sent me home with a steroid prescription I’ve been taking since then, and three weeks ago we added an immunosuppressant named leflunomide to the cocktail

things have been Okay? I’m making it to work more often than not, and I’ve had the energy and gumption to throw myself into a crafty project for the first time in a good long while

and then last week I noticed something was wrong with my feet.

namely, that they had fucking shrunk.

that. is not a usual turn of events.

steroids like prednisone are known to cause fluid retention and swelling, so if anything one would expect one’s feet to puff up, but suddenly I was pulling the buckles on my shoes a full centimeter and a half tighter to keep them secure on my feet, and they just fit differently, the edge of the toe box started hitting a different part of my foot, I am thirty-six years old this is not normal

never let it be said I was not methodical in double-checking that I wasn’t just losing my fucking mind again. I collect Hot Chocolate Design shoes, which are remarkable in the consistency of their sizing, and I double-checked the fit in all nineteen pairs I own, just to be sure I hadn’t somehow stretched out a few from wearing socks and/or insoles, but it was pretty damn clear that somehow, I had lost half a shoe size in a v. v. short amount of time

theory: I am on steroids and a serious immunosuppressant, maybe they’ve taken down some long-standing inflammation I wasn’t aware of?

counterpoint: I have worn the same shoe size for well over a decade, and it has stayed the same through multiple major weight and activity changes

counter counterpoint: yeah but my feet have hurt that whole time like?

counter counter counterpoint: yeah true but I was working retail that whole time and that is really hard on the body

counter counter counter counterpoint: I am not a doctor, there may be some concerning reason why my feet have suddenly gotten smaller, I should consult a medical professional just in case this continues and I suddenly can’t wear my nineteen pairs of fantastic statement shoes

so I emailed my rheumatologist.

in the interim, I tried google, and even with all my fantastical powers I wasn’t able to summon a halfway satisfactory answer, unless I somehow have a spontaneous mutation for something like extremely atypical extremely late-onset Charcot-Marie-Tooth, which is just. no. I am already a weird outlier with two seronegative autoimmune diseases and a mess of hereditary neuroses, I am experiencing something strange here but not statistically impossible.

my rheumatologist got back to me this afternoon, and I apparently continue to be the rarest, most beautiful unicorn ever, because despite his decades of medical practice and research in four different countries he has never seen nor heard of a patient’s feet suddenly shrinking. that said, his best guess is my best guess, he can’t think of any other possible explanation besides better living through massive immunosuppression, but he would like me to inform him immediately if anything else remotely odd crops up.

love that weird outlier life.

#sufferpunk life #chronic illness #sjogren's syndrome #in the style of john mayer:#my body is a horror show #medical cw #stella is an outlier adn should not be counted #I don't know how to tag this to stay clear of weird fetishists but uh #podiatry issues #maybe?

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awheckery · 3 years

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so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

#long post #sufferpunk life #chronic illness #chronic pain #sle #lupus #aka why I've gotten nothing interesting or creative done since last year #fml

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