#spoonie lit

[unabridged-adventures]

This novel means so much to me as a disabled/chronically ill woman with POTS. I have never seen my experience represented like this in any other book except for maybe Get a Life, Chloe Brown. I will forever be thankful for Lillie Lainoff and her bravery in sharing her own experiences so openly.

[s0fter-sin]

i’ve somehow managed to fuck up my leg despite the fact that i literally don’t move

[serenebutterfly]

As Invisible In Books As I Am In Life

"The more time I spend inside books, the more my life feels as fictional as what I'm reading. Because books rarely reflect any fragments of my reality of living with a #chronicillness."

[sleep-safe]

i bought cara delevingnes book (mirror, mirror) from the dollar tree of all places (in hardcover too????) and tbh it was good. i just read all 400 pages in one sitting.

[zevthejewitch]

Having a really witchy day.

☕️ This morning, when I added creamer to my coffee and stirred it in, I stirred clockwise to bring the intention to fruition and I just asked for a good, positive day.

🍓 For dinner, I went over to my partner’s new apartment and brought a jar of strawberry jam which I read was a Sephardic tradition upon moving to a new place. My partner took a spoonful of the jam and placed it in a small dish I picked out. It was for the sheydim of the house to snack on as a sort of introduction and to prevent negative feelings from the sheydim.

❌ Then I looked into curses and hexes. I don’t think I’m quite ready to do that yet and I’m a little hesitant karma-wise, but there’s some politicians and transphobes that really have it coming, so I’m studying it and on the lookout for a good beginner one.

⚧ When I got home, I cleaned and organized my space lightly. I carved the trans symbol into my candle and lit it with the intention that it should strengthen the trans community (myself included).

🎵 Now I’m listening to one of the songs on my witchy playlist, watching the candle, and reading up on some low energy magic for spoonies.

🧿 I’m also wearing my new evil eye necklace and it’s so comforting and makes me feel powerful and safe and connected to my ancestors

[thesickpanda]

All Aboard the Train of Despair!

 It has been a while since I posted a spoonie rant on my blog. Here goes.

Long story short: I have been sick with a chronic illness for most of my life, which has steadily worsened over time. Recently, I saw a top-rated (and eye-wateringly expensive) specialist in Sydney who, after many blood tests, diagnosed me with a chronic gut infection (I lit up like a Christmas tree for inflection markers). We think we know the exact time and place I became sick, and it was in South Africa when I was aged 11. At that time, I accidentally drank borehole water from a rural area and became violently ill. My neglectful parents never took me to see a doctor about this, even after serious gut problems persisted for years after the initial infection. As the infection went untreated, I grew sicker with every passing year (with a 5 year period of remission when I moved to the UK, before contracting what we think was swine flu in 2009, which effectively restarted the illness as my immune system became overwhelmed). Anyway, in response to this chronic, 25-year-long infection, I have (as I have suspected for years!) developed a mast cell disorder which is wreaking absolute havoc in my body, including, most recently, gastrointestinal bleeding. The specialist decided it was best we treat the mast cell response with stabilizers and H1 and H2 blockers, because he cannot test for, and thus cannot treat, an infection I procured in another country. (He did test me for Australian bacteria, just in case, but unsurprisingly I did not test positive for those). He supported my suggestion that I reach out to South African specialists in the hopes they might provide me a list of microbes and viruses they would test for in their own patients if they shared the same history as me. I would also need to know what lab they’d send a patient’s blood samples to, so I could try to get my blood tests sent overseas to them for analysis. (This would cost me thousands of dollars to do, btw).

I have emailed an infectious disease specialist in S. Africa and had no reply, so I will try an integrative medicine specialist next. I will keep spamming SA experts until someone responds. In the meantime, I started the drug regime prescribed to me by my local specialist. He told me that because my body was so hyperactive (my gut has rejected numerous other MCAS drugs in the past) that it would not be surprising if I rejected one or more of the drugs he was going to trial me on. The first was a mast cell stabilizer which, in theory, should prevent my mast cells from getting all uppity, and thus make way for the H2 blocker and then Low Dose Naltrexone (both of which my body rejected last time).

It is day 5 and.... Guess who has developed diarrhoea in response to the drug that is supposed to stabilize my mast cells so I can eat a wider variety of foods so I can start getting well enough to fight the infection? :D

I have more food intolerances than you can shake a stick at, which has led to all manner of deficiencies and health issues. Chronic low grade infections leads to iron deficiency (I am very anaemic), and the doctor strongly reckons my MCAS is in my lower abdominal tract or even my large bowel, which explains nutrient malabsorption. For example, I have the early signs of osteoporosis as my body cannot seem to absorb calcium, no matter what supplements I throw at it.

I NEEDED the Sodium chromoglycate to work, not just for my physical health which is declining year on year, but also for my mental health. I NEEDED something to go right after so many things have gone wrong.  But it’s basically giving me IBS symptoms so far. I have not been on it a week, and perhaps he will just tell me to persevere and perhaps my body will get used to it and stop acting out, but based on my history? I doubt it. Generally, my body gets angrier and angrier the longer I stay on a medication it does not like, and I get sicker as a result. I was meant to trial out moderate trigger foods while on this drug, but I can’t because I won’t know if it is the drug or the food causing diarrhoea! I also cannot introduce the other 2 meds until such time as my body settles down (which it may never). And, TMI but fuck it, this is the reality of living with any IBS-like disease, I have chronic hemorrhoids and painful anal fissures which take WEEKS for me to get under control. I just managed to calm down my last bout when I started this drug, and guess who has a sore butt hole again as a result of constantly going to the toilet?

I am also recovering from the Covid booster shot I had on Monday, so have had extra Fibro pain and swollen lymph nodes to add to my suffering.

I have emailed the doctor to find out what to do next. Persist and hope for the best? Desist and then what? This bottle cost me $180 and the LDN another $270. I have not even tried the LDN! I was a fool to get both made up at the same time from the compounding pharmacist, because it is looking like I won’t be able to tolerate either. We are haemorrhaging money and cancelling days out, short holidays and basically any form of joy, to both afford and get through a treatment regime that so far is just making me miserable.

I fucking hate everything right now. It’s just an endless misery-go-round of exorbitant doctors, failed treatments, body horrors, financial distress, emotional distress and having to re-explain to my friends that no, sadly, the latest attempt at restoring my health also failed. 25 years of feeling like hell, and now there are grey hairs on my head and creases around my eyes. My youth has been lost in sickness, my opportunities robbed from me, and my life put on pause as I wait, endlessly, for the living part to actually start.

[plushies-and-petrichor]

Plushies-and-petrichor Sideblogs:

**This is a list of all the sideblogs I currently run and will be updated any time I create any new blogs or delete/retire any of these.**

@labelhoardinggremlin (label hoard)

@adventuringslimerancher (Slime Rancher)

@maybepossiblyghostkin (ghostkin)

@foghornleghorndrawl (Knives Out)

@undergroundmusicbox (Undertale)

@memoirsofalibraryghost (English lit/linguistics)

@sowibblywobbly (Centaurworld)

@pinkminnieisbestminnie (pink Minnie Mouse)

@i-steals-so-i-can-feels (kleptomania)

@zfiend (Report! the Genetic Opera)

@onepagetorulethemall (Lord of the Rings)

@innerchildofwoe (gothic agere/Wednesday kin)

@mummyofnightmares (agere CG/Sally kin)

@b00tyyyshaker-9000 (TMNT)

@angeldustedantics (Hazbin Hotel/Helluva Boss)

@ittybittymerkitty (pink agere/kitty mermaid petre)

@sibbydonteatthat (pica/Sibby says I'm a "puts everything in my mouth" autistic xD)

@longlostpevensie (Chronicles of Narnia/Lucy Pevensie kin)

@muppets-r-us (Muppets)

@plussizepinkiepie (Pinkie Pie cosplay)

@genewilderwonkasupremacy (Willy Wonka)

@wheeling-to-disney (Disney spoonie)

@welcomehomeyou (Welcome Home Puppet Show OC/fandom)

@celestiallyineffable (Good Omens)

@weebabyangel (Aziraphale-kin agere)

[eorumrosae]

about my new yule traditions

So yesterday (Sunday) was the last day of my new Yule time tradition. Hearth Week. Today marks the day for the next one "Healing and Meditation with my Spirit" week. I guess I started that with tarot and doing one of the 'get to know thyself' spreads. Hearth week was all about lighting up the hearth for the week. In the most middle I could manage, I set up my altar, with a hearth fire in the middle (charcoal with incense or a bigger candle to light each evening) and five tea lights lit from the hearth fire around it, to illuminate the dark evenings. Enjoying the warmth and the energies. To provide myself and my spirits a connection to our home and each other. I can't say it went the best it could have. I had a break down the very first evening I lit the charcoal. Maybe this week I can dissect the emotions of that with my Spirit. The Fire brough warmth and happiness aside the rocky start. Despite of my mood swings, I still lit it each night -- there's something to say about doing things even when you don't feel like it. It helps you to be consistent, and it shows respect over agreed upon things. Small little unvoiced promises, it's nice to keep them, too, even if there's no tangible expectations. And there's always a chance it will enhance your moods/well being, when you do something you decided to do, even if you really really don't feel like doing it. It's still, good to see the difference between not really feeling up to it, and not really being able to. It's okay to know when you can't do something, and postpone it. As a spoonie, I wasn't able to do personal tarot, so I didn't, but I still did what I could otherwise - lighting incense, candles, the hearth.

And sometimes, we as people, just need a break. The craft isn't about grinding it through, expending your energies thin, even everyday thing that you 'should' be doing. It's good to practice, have a curriculum for yourself to follow, but it's not a school and you're not getting tested for it. It's more like life, sometimes you gotta learn things outside of it, to understand things inside the craft. Experience begets knowledge. Pushing your limits is normal when you've got the drive and the goal, and even when you 'don't really wanna do it' -- but pushing yourself to do something because of intangible, unspoken expectations hanging in the air? Who the hell are you trying to please? What's that got to do with your path or your craft? Weave your goals for yourself. Create that purpose for yourself. Call the world you want yours to look like, for yourself. Don't live for the 'ghosts' that don't even know your face. Onto healing and meditation. This week might be difficult. I'm really no good at meditation but it's something I choose for myself. So lets see where that takes me..

[howtobeapersonwithfibro]

#spooniebookclub January 2021 Book Vote

Hi all,

(if you’re new to this and haven’t seen my other post, feel free to join!)

I’ve looked up lists of popular/well-liked books centered around disability, and here’s a few options for us to vote on. We will read the winner of this vote in January (doing our best to find it in libraries, etc. - I hope we don’t have too much trouble finding it. I recommend the library app Overdrive and other recommendations would be greatly appreciated) and discuss it around the end of the month. 

If we find accessibility to the book is an issue, we will pick the top two books to discuss, giving people a better chance to find at least one.

(The remaining books on this list, if they have interest, will be rolled over into next month’s vote.)

Option 1: The Center Cannot Hold: My Journey through Madness by Elyn R. Saks (a nonfiction personal memoir)

[description copied from a Bookriot(.)com list]

Elyn R. Saks began hearing voices when she was a teenager, at a time when schizophrenia was largely misunderstood. Throughout her young adulthood, she struggled with crippling paranoia and the frequent inability to tell reality apart from delusions. Through years of treatment, however, she was able to overcome significant barriers related to her disorder and become a lawyer, professor, and psychiatrist. This memoir details Saks’s experiences as well as ongoing challenges she still faces related to the disorder.

Option 2: On the Edge of Gone by Corinne Duyvis (fiction)

[description copied from toledolibrary(.)org]

On the Edge of Gone by Corinne Duyvis is unique in that it focuses on what happens when an autistic woman named Denise is faced with the apocalypse. I wanted to include this book since I read an article about disability and the apocalyptic narrative a few months ago, and thought the discussion was incredibly interesting.

Option 3: The Giant’s House by Elizabeth McCracken (fiction)

[description copied from lithub(.)com]

This poignant and affecting novel about spinster librarian Peggy Cort’s love for James Sweatt, a younger man who was already 6’2” at eleven years old, can be seen as a counter to Diane Arbus’s famous 1970 photo, “The Jewish Giant at Home with His Parents.”  Whereas Arbus’s giant is but a metaphor for our fear of difference—as well as the photographer’s own sense of herself as freakish—McCracken depicts the inner life of James Sweatt, as well as his life with his family, who welcomes Peggy into their fold.  McCracken doesn’t shy away from the physical issues that beset James’s body as he grows older and taller. The humanity of this novel is breathtaking.

Option 4: Good Kings Bad Kings by Susan R. Nussbaum (fiction) 

[description also copied from lithub]

Playwright Nussbaum’s fiction debut, recipient of the Bellwether Prize for Socially Engaged Fiction, is told in the voices of seven diverse characters, patients or employees of an institution for adolescents with disabilities. 15-year-old Yessenia describes the situation succinctly: “I do not know why they send us all to the same place but that’s the way it’s always been and that’s the way it looks like it will always be because I am in tenth grade and I been in cripple this or cripple that my whole sweet, succulent Puerto Rican life.”  Nussbaum gives voice to every character with an unsentimental vitality rarely matched in fiction.

Option 5: Laughing at my Nightmare by Shawn Burcaw (nonfiction memoir)

[desc copied from toledo library again]

Laughing at My Nightmareby Shane Burcaw is a very humorous account of Burcaw’s experience growing up with spinal muscular atrophy. His work is very relatable to teens as he was only 21 when he wrote his book, and makes difficult discussions accessible through humor.

Please post a reply voting for no more than two options with their numbers. (For example, you could say: I vote for Option 1 & Option 2 or Option 3 gets my vote!). 

[libertyreads]

Book Review #29 of 2021-

Lycanthropy and Other Chronic Illnesses. Rating: 3.5 stars.

Read from May 4th to 6th.

I had such a fun time reading this one...especially after the disaster that was The Past by Tessa Hadley. This was so readable and so easy to get lost in. I ended up finishing this one a day early because it was such a fun time. This is the story of a girl who has recently been diagnosed with Lyme disease and who turns to an online chronic illness forum for friendship and commiseration. But when one of the members of the “oof ouch my bones” forum goes missing Priya is on the case to track her down. What she finds might be more than she can handle.

I feel like I need to speak first to the representation of chronic illness in this book before we get to the fun werewolf stuff. As a person with a few diagnosed chronic illnesses, I felt like I could connect with a lot of what was said in the forum and a lot of the day to day things that Priya has to deal with as a chronically ill person. I felt like it was good representation without being what I call “sick lit.” It’s not there for the reader to become Inspired by. It shows the harsher realities of being a sick person and how sometimes it’s not inspiring, sometimes it just sucks. As for other forms of representation in this book, I can’t speak to any of that because I’m not a person of color. As for the werewolf side of things? I kind of loved it. I think the blurb on GoodReads is right that it is pretty similar to the antics that happen in Teen Wolf. But thankfully the 18-20 year olds all act their ages and don’t come across as adults trying to be kids. *stares in the direction of MTV’s Teen Wolf*

I also really enjoyed the friendship between Priya and Brigid. I enjoyed seeing them fight and argue about the things they were experiencing, but also being able to still be friends and hug and say I love you without any of it coming across as romantic. I think there’s a lot of value in platonic relationships and I enjoyed seeing that play out. I also enjoyed Spencer. He was probably modeled after Stiles from the Teen Wolf show, but I’ll allow it because he was a ton of fun. I also liked seeing the dynamic between him and Priya changed over time but never actually became romantic on the page. I think that would have cheapened what happened throughout the story.

I do think there are moments when it become obvious that this is a debut novel which is a shame because it was so much fun. I think the action scenes need more description because everything was pretty muddled as I was reading it. I also feel like there were a few moments after Priya first sees Brigid as a werewolf that should have held a lot of weight for me but didn’t. I think that should have been clarified a little bit.

But overall it was a fun time and a quick read. I really enjoyed seeing the friendships and relationships develop. And I loved the whole werewolf mystery that was going on throughout the novel.

[crippleprophet]

i’m taking an introduction to disability studies course this semester and because my instructor is incredible, all of the material we’ve been reading is available as pdfs, so i decided to start a google drive of that plus some other pieces i’ve collected. if you want to check out some disability lit it’s here!

it’ll be updated about weekly through december with what we’ve read in class that week. if you have any pdfs you’d like to share feel free to send me a dm and i’d love to add them!

[orangeblobby]

im working on a migraine questionnaire that i dont want to do...bc of my migraine

theyre like how many migraines have u had in the last three months and im like “too many, now let me go to bed”

[i-call-me-clarence]

When you’re having a bad day and have to use your walker but a banger comes on so you have to jam anyway:

[galaxyhazbin]

jesus christ what do you do for an ear infection. already on antibiotics but how do i stop passing out and being sick and like, crying.

[ohthehumanities]

September 16, 2020

The days seem to be getting busy already, but I have realized several times that my brain becomes primed to work as if my environment is busy. So, by the end of the week, when I have the chance to relax and spend time with hobbies, I still have a drive for productivity and I have to put in work to calm down.

2/100 Days of Productivity

I started my school day with a social psychology test, which went well. I did some studying and reading after the test, and I just got done with my wisdom literature class.

I’m excited because I won an Amazon Kindle Paperwhite yesterday! My library held a summer reading contest, with a Kindle as the sweepstakes grand prize. I was so surprised to win it. The first book I downloaded was a collection of short stories, including The Plague, by Camus.

I think I want to go exercise now. Later in the afternoon, I will study for abnormal psychology, complete research on A Tale of Two Cities, and do language study if time allows.

[Image description: a photo of items on a brown desktop. There is an Amazon Kindle Paperwhite on top of a copy of “Readings from the Ancient Near East”. The book is larger than the Kindle. Behind the Kindle and book are covered sewing machine and lamp. End description]

[pomegranatesanddevotions]

Me wanting to light Hades’ candle and meditate with him VS me having chronic fatigue and accidentally falling asleep every time I try to meditate and not wanting to leave his candle burning unattended