#lyme diaries

[neuroborreliosis]

www(.)ineedatherapist(.)com/

written in a bad bout of brain fog - 7/20/23:

i sit here like a screensaver staring out, taking nothing in i sit stupefied by very mundane surroundings while time wastes itself on trivialities my brain booms with echoes of thoughts that evaporate before they hit me my ears are tornadoes where white noise and tinnitus ring around and clang against my consciousness like vehicles and furniture and other things lost to encephalitic winds

saran-wrapped brain suffocates me in my wakeful state just enough to make me go a little bit dim, not enough to call a doctor in i feel like if i don't scream and keep screaming i'll die forgotten like this, cold-war collateral strung along by b. burgdorferi, silent slo-mo fadeout from the sickness that screens me in.

[yallwildinrn]

Only in a post-bed bug house are you happy to find out it’s a tick on your bed

[chronicalsofcricket]

Mondays and Mercy

Well, if you've been following my story since I created this page two weeks ago, you'll never believe what I did today. I got AHEAD in my work and I also

D E C L U T T E R E D!

Yes, maybe it was only a fraction of what actually needs to be decluttered. And yes, I also accidentally started a fire today. But thats not important.

What is important, is that I actually did something. Something that doesn't involve my face an inch from my phone screen. My screentime is, no joke, 12 hours a day. That feels pathological to me.

Depression really is a terribly nasty beast. The veil of darkness finally lifted a little bit a few days ago. I thought the switch happened on Monday, but suddenly Monday is already tomorrow? Sometimes I blink and i'm somewhere else.

Having memory problems really fucks with your sense of time. It kind of blurs the edges of life a little bit.; everything feels so very far away. I don't even have that nagging feeling that i'm forgetting something, because at any point in time, I know I am.

And it's no use trying to figure out what it is. That's for no one to know and me to find out. Sometimes it's nice being in the dark, like covering a dogs' crate with a blanket. It can be an act of mercy.

Anyway. I'm grateful I have a little bit of sunshine right now. Man, it's crazy. You're telling me there are people who feel like this without multiple psychiatric medications?

I swept a little, and folded a ton of clothes, and eventually, I started to see the floor again. I'm going to hold onto this feeling for a long as I can. I think i'm doomed to a lifetime of emotional pain. Days like these give me so much hope.

I can live on hope.

Goodnight,

xoxo a cricket

[love-lacie-grey]

I’m not going to do a real diary I’ll just say the c4ls. I have Lyme disease and I’ve been doing a lot better lately when it comes to being able to do things, but this evening everything crashed and now I feel like I can barely move. So fun.

I ingested 1,441 c4ls. (More than my d!et but I burned a lot too)

I burned 1,409 total.

That brings me to an end total 32 technically but in ny head it’s still probably like 100 c4ls leftover.

I hope all of you are doing well and having a good couple of days. Be safe lovelies. 💕

[caughtupindrama]

*The List* (1 of 2)

Current list of musicals I've listened to and/or seen!!

* = seen live (includes high school productions, amateur theatre, etc.) ^ = seen a recording/movie musical version & = listened to multiple recordings or demos !! = performed in (partially or fully)!! ! = was otherwise involved in a production favourites are in colour <3

Hamilton * Death Note Falsettos ^& (March of the Falsettos + Falsettoland) Be More Chill & SpongeBob Squarepants: The Musical *&!! Little Shop of Horrors *& Book of Mormon *^ Mean Girls ^ In Trousers ^& Avenue Q ^& Everybody's Talking About Jamie Heathers *^&!! Nine ^ The Lightning Thief & Dear Evan Hansen ^ Matilda ^& Spring Awakening *^&!! Junie B. Jones Frozen *^ The Little Mermaid *! Six *& Hairspray ! Adrian Mole Legally Blonde ^& Chess Starlight Express & Emojiland Hadestown Bright Star * Wicked Sophia, Our Beloved 25th Annual Putnam County Spelling Bee * Frankenstein Cats * Charlie and the Chocolate Factory La Cage Aux Folles & Addams Family Mary Poppins ^!! Beetlejuice &!! Aladdin ^ Bare: A Pop Opera The Theory of Relativity Little Miss Perfect Curtains !! Lizard Boy Hedwig and the Angry Inch Treasure Island Co-Op Jagged Little Pill A Year With Frog and Toad * The Prom ^& Newsies *^ Carousel & Camelot & Oklahoma 21 Chump Street ^ Ordinary Days Shrek the Musical !! Bat Boy *! The Sound of Music * A Strange Loop *& Crazy for You Chicago * Goosebumps The Musical: Phantom of the Auditorium Natasha, Pierre, and the Great Comet of 1812 Fancy Nancy: The Musical Come From Away Amélie & The Mad Ones 3hree Island Song Snoopy!!! / The World According to Snoopy & Drag: The Musical Flat Stanley Dear Edwina Guys and Dolls * A New Brain Beauty and the Beast *^ Wuthering Heights Meet Me in St. Louis * The Fantasticks [title of show] Cabaret *& John & Jen Les Misérables * The Great British Bake Off Musical Into the Woods *& KPOP Shucked Kimberly Akimbo The Lion King Bend it Like Beckham Footballers' Wives Dog Man: The Musical Hats! The In-Between In Transit A Chorus Line The Golden Apple The Love Note She Loves Me Octet Preludes Candide The Music Man Linie 1 Mamma Mia! ^ In the Heights The Secret Life of Walter Mitty Oh Captain! 13 Waitress & Ushers Rats! Spamilton Weird Romance & Juliet You're a Good Man, Charlie Brown * A Very Potter Musical ^ Ride the Cyclone The Three Billy Goats Gruff The Wedding Singer Babes in Toyland Urinetown Dear Pen Pal Women on the Verge of a Nervous Breakdown Finding Nemo Blues in the Night Unfortunate Sole Mates Operation Mincemeat * The Three Little Pigs Anastasia The Phantom of the Opera *^& Arf! Back to the Future: The Musical * Pellets, Cherries, and Lies Rocky Horror Picture Show ^ A Little Night Music * Sunday in the Park with George Pretty Woman: The Musical Sweeney Todd: The Demon Barber of Fleet Street & Carrie Fun Home Hello Again Kinky Boots The Full Monty A Man of No Importance The Producers Jesus Christ Superstar 36 Questions ^ The Little Big Things * Jersey Boys * My Son's A Queer (But What Can You Do?) The Dolls of New Albion Band Geeks The Band's Visit Wait Wait Don't Kill Me Diary of a Wimpy Kid Groundhog Day Anything Goes* Technically: A Musical * Footloose * The Trail to Oregon ^ tick... tick... BOOM! * Epic: The Troy Saga Leap Day Grease * Duolingo On Ice Nunsense Don't Let the Pigeon Drive the Bus! Pinkalicious Parade * How to Dance in Ohio Tootsie Something Rotten! !! Two Strangers (Carry a Cake Across New York) * The Last 5 Years Next to Normal Buddy: The Buddy Holly Story Wuthering Heights Supernatural: The Musical The Pajama Game Kiss Me Kate * Babies * Knuffle Bunny: A Cautionary Musical Mad Libs Live! Lyme Disease: The Musical Your Lie in April * Lempicka [continuation]

[gettingthebestofyou]

So, who am I and what am I doing?

I’m a 40 year old woman living in the northeast US. I’m documenting my journey on a GLP-1 Medication. Feel free to come along for the ride or to ignore entirely. There will be frank discussions on weight loss, body image, and injectables.

I’m keeping this as anonymous as I can make it. I want it to be a diary of sorts.

Here’s my story…

I was always overweight as a kid, but I learned to have a very dysfunctional relationship with food because my mother hated her weight. I can’t remember a time where I wasn’t on a diet or I wasn’t thinking about what foods were good, what was bad, or how much I could have without looking bad in public.

I managed to keep my weight under check as a child, but I was always “chubby.”

In college I went up to 180 lbs. Even with being very active, I had no control over how I was eating and didn’t ACTUALLY understand nutrition.

After college I had a fairly active job, and I tried to keep active with gyms. I went on multiple diets many times. My weight fluctuated a lot.

Part of my job requires me to be in specific kinds of clothes, and to be in front of mirrors often. I see myself all the time. I do not like what I look like.

I did not like dieting and exercise, but I managed to stay just a little overweight for the majority of this time.

I was able to keep my body in check until 2014.

In 2014 I contracted Lyme Disease, but because I did not see a target rash and my test kept coming back negative (falsely) they wouldn’t medicate me. Over the course of 4 months I went to 5 different doctors, including one who wanted to diagnose me with Fibromyalgia and treat me with a course of muscle relaxants to sleep and caffeine to keep awake. The last Doctor finally treated the Lyme, and within 24 hours of being on medication I saw a 50% reduction in symptoms. I gained about 30 lbs in those four months.

In 2014 I also went back to school and my lifestyle changed drastically. From 2014-2019 it was a struggle to have energy, to move, even to sleep sometimes. It was all symptoms I had with the Lyme, but on and off, sometimes better, sometimes worse. Dieting became a struggle for me and the things I had done to lose weight before weren’t working.

During this time, I tried many drastic things to lose weight, which only worked for a time. I started to accept that I wouldn’t never be thin.

No matter what I did, in the end, my weight always went up.

When Covid hit, like so many others, everything stopped. I was unable to move, and keeping my weight in check was a dream at this point.

In 2022 I decided I’d lived with my head in the sand long enough. While I had been well other than my weight for years, I hadn’t seen a primary care doctor since 2015, and mine had retired during the pandemic. I went to a new primary, who found a myriad of issues.

Of note: high cholesterol, high lever enzymes, high A1C and high TSH.

I ended up changing primaries because I didn’t like how she seemed so unconcerned with my high results as I have a myriad of health issues in my family history.

My new PCP is amazing. With his guidance and the help of a nutritionist and a personal trainer, I’ve decreased my overall cholesterol to normal levels, my LDL is only slightly out of range, my liver enzymes (which indicated non-alcoholic fatty liver) are also now normal, and after referring me to an endocrinologist, I was diagnosed with Hashimoto’s Thyroiditis which is now being treated.

Over the last year and a half, I have not been able to get my A1C down, though, no matter what changes I make.

After my last round of blood tests, and with my PCP’s agreement and cooperation, my endocrinologist has put me on Zepbound.

I am engaging on a GLP-1 Journey, like it or not. Some days I like it, some days I don’t.

Here, I’m going to recount it all.

Today is February 3, 2024.

Today I start finding the best parts of me.

[duskys-mind-palace]

Made this in the beginning of 2023 (this was harder than expected)

10/29/23

Dear Diary,

I’m tired of putting off my hobbies for whatever reason. Here’s to creating and sharing art without limitations.

I won’t share this blog with anyone I know IRL so that way I won’t feel embarrassed to post or anything. Ya know that’s one thing i hope to change for the coming year. Straight up not giving a fuck about what others think so I can live my life in peace.

And by that I mean a healthy lack of fucks not being given. Like how eventually I’m going to have to stand up to my parents. I would consider myself a person who values harmony and balance and the inevitable conflict makes me feel uncomfortable. I cannot fulfill all their expectations and simultaneously live authentically.

It’s one of those things I’ve been dealing with my whole life though. Sure I’ve gotten better at being more assertive with others in my life but doing that with my parents…. It’s like the final boss of fixing this flaw. I love them and I know they won’t be in this life forever. I guess I’m at an age where you really start to realize how short life is. I’m not *that* old tho haha

It’s just that my mom sent me a selfie and I saw wrinkles on her face that weren’t there before. I’m crying typing this but I really needed to get this off my chest. She has chronic Lyme disease and arthritis and other heath issues so…. Ahhh I just have to enjoy the time I have with her.

Ok happy stuff now. Im visiting everyone for Christmas break yay. Ok I know I said happy stuff but the thing I’m not admitting about going home is that I’m afraid of running into my ex even tho it’s highly unlikely. Im more likely to run into one of his parents…. Which would also be undesirable and gut wrenching. If I’m being honest I don’t want to be in the same place I shared a lot of memories with that part of my life.

It’s probably for the best that I confront my issues rather than run away from them. Haha reminds me of that meme “men will do anything but go to therapy”

I’m no man tho, clearly

Other than that, I truly am looking forward to seeing my friends and family.

I can’t wait to show you more art! I’m cookin something up with ms paint :3 I might take it over to Krita to add other details, we’ll see :D talk to ya real soon!

Sincerely,

Me

[psalm40speakstome]

Impossible so I’ll just do current ships screaming loudly at me or that I’ll always ship. And I won’t say half of what I want to say about their glorious-ness but this was fun! 😍 Thanks @chipmunkfanno1love and I nominate @what-breaks-my-heart 💛

1. Love Between Fairy And Devil.

Orchid and Dongfang Qingcang.

Just finished this drama and obsessed with them! 😍

2. Once Upon A Time.

Emma Swan and Killian Jones.

One of the best romances American television has ever give us…

3. Healer.

One of the most glorious adorable ships and drama’s ever! Timeless and perfect.

4. The Vampire Diaries.

Bonnie Bennett and Enzo St. John.

A surprise ship later on in the shows airing that took over my soul and destroyed me.

5. The Lunar Chronicles.

Princess Winter and Jacin.

“He is the only thing that is real."

I LOVED these from the beginning because of everything. I’m also a sucker for a guard and princess type trope…but even without that these two are glorious and steadfast and beautiful.

And knowing now that I had Neurological Lyme when I first read them makes even more sense why Princess Winter resonated with me so deeply and gave/gives me hope.

“It has to be this way. I will accept this side effect. I will accept any amount of monsters my mind wants to give me, but I will not become a monster myself.��

Princess Winter Hayle Blackburn.

“The wounds would become her armor, and a constant reminder of her victory. She might be broken. She might be crazy. But she would not be defeated.” Princess Winter Hayle Blackburn.

Bonus: Because I CAN’T leave them out.

Crash Landing On You.

Yoon Se Ri and Ry Jeong Hyuk.

One of the best couples ever and best drama’s ever. I ADORE them. I will never be over them and this drama.

Favourite Ship Tag Game

Since tag games are so popular around here, I thought I’d give it a go and make my own. :D

Choose 4 romantic ships (fictional couples and/or fictional characters you *wish* were couples) you love from any fictional source whether it be books, movies, TV shows, mobile/video games, etc. Please also reference the fictional source they come from. The list doesn’t have to be in any particular order.

Give your reasons why you love this couple and/or why you think they’d *make* a great couple. If you can, please include a picture or GIF of the couple.

Tag 5 of your followers to share this game with. You may choose to tag more or less if you wish, but I do recommend choosing 5. No pressure, just please share this game with others for the sake of spreading the word. 

Please be respectful of others and there opinions. No abuse please. :( Also, have fun. :D

*Warning*: Story spoilers ahead.

Keep reading

[cynicalpositively]

NOT TO SOUND LIKE A PSA BUT!!!! I GOT LYME DISEASE AND THIS SHIT IS NO JOKE OK, SPRAY URSELF DOWN WITH BUG SPRAY BEFORE U GO INTO POSSIBLY BUGGY AREAS!!! I had to be hooked up to an iv overnight in the ER and had a lumbar puncture to make sure the lyme disease didnt get into my spine or brain!!!! Be careful! Be safe! Dont get fucked up like I did!!!!

CHECK YOURSELF FOR TICKS AFTER BEING IN TALL GRASS OR IN THE WOODS!!!!

[neuroborreliosis]

2.3.2024

friends fall by the wayside but we don't want to let them go, lest some precipice open its lip and swallow them whole.

what to do with all the feelings that come up? how to write them before they are dampened?

how to write about feelings when you're so accustomed to big feelings that they don't even feel so big anymore?

i haven't written an update in the better part of a week. i've been crocheting a lot, mostly. i'm making a shrug for myself, with big flared sleeves. it's coming along - the neck/chest is complete, and i'm almost done with one whole sleeve. then i gotta crochet the next sleeve and it'll be complete.

i've also been depresso sauce. i guess. not anything sensational, just the afternoon doomies reaching down from gray skies to wrap around me.

i think it's from the antibiotics. but maybe it's from lack of sunlight. but i'm taking vitamin d! maybe it's from being alone in this big house for hours while dillon and jules work all day. maybe it's from having the energy sucked out of me by spirochetes.

i don't know what to say. i gotta say something. i'm here. i'm shitting regularly again, at least. i ate a burger two nights ago, and salmon last night, after going too long without a good hunk of meat. i felt so weak. i feel a little less feeble since i got some boosts of protein.

my one friend in particular, whose name i won't mention (i don't want to put his shit on blast) is going through it. he always is. he has been for several years. we met at my third high school, city-as, the one i actually graduated from. we had a class together and sat next to each other and found out that both of us were really into film and wanted to make movies. we swapped movie recs, we talked about cinematography. he was also a talented photographer of all things very nyc. all of us city-as homies used to go to what we called "thirsty thursdays" at the galleries in chelsea. the school was in the west village. after school on thursdays, like clockwork, we'd trek up to chelsea and go to free gallery openings, where we'd look at the art and get drunk off of free wine and beer that they served at these things. it was awesome. sometimes, we'd sneak into gallery stairwells to smoke weed. sometimes we'd walk the couple blocks to riverside park to light up. either way, this was definitely a highlight every week. this friend of mine, he would come. and later, after we'd all graduated, he actually had a show there! his debut photography exhibit. this kid could go places. he had something, a special kind of sight, that he gave us all through his photographs. he's still around, but for the last several years, pretty much since high school (almost ten years ago, jesus! i feel old) he's been dealing with dope addiction. he can't afford a phone, hasn't been able to for years, but we keep in touch over instagram, which he sometimes gets to access on other people's phones, and he calls me every so often from random numbers. he usually is asking for money. i throw down, because i love this kid. i want him to be safe and i don't want him to have to do sex work for money because i know for a fact that he hates it. anyway, he called me last week for money. i told him i could send him a few bucks, but that i'm broke and what money i do have came from my gofundme and it's set aside exclusively to be used for lyme disease treatment.

i dunno why i felt the need to write about this. maybe because i'm just sad. i'm sad for him, for the loss of his father to suicide, for his dreams and his brilliance shelved. i know what it's like to be deep in addiction, and it hurts so goddamned much to know all i can do is be here for him. it hurts so much to know that i can't make things easier, that i can't make him want to stop using. i just hope he keeps up with his art - he's also a brilliant writer, by the way - and that he finds a way to keep at it and share it with the world. and i hope he stays safe and warm and out of harm's way.

[wren-birdie]

Lyme Diary #2

Important things to know about Lyme (that you may not know!):

There is a chance Lyme could be spread sexually. It can be spread from mother to child, and since syphilis is sexually transmitted (and also is a spirochete), it is a concern. Not enough testing has been conducted to show a bias one way or the other. Either way, use protection! Dental dams and condoms are your friend.

Chronic Lyme is more common than you may think. Once a test is shown to be positive, you have Lyme. If future tests come back negative and you are still symptomatic, you should push to continue testing. If you are symptomatic and do not get a positive test result on a simple blood draw, consider using the ELIZA test, and before doing the blood draw for it, work out in the AM for 30-60min (something that will jostle the cells, push yourself hard), go home and take a warm shower, get a 60-90min deep tissue or heavy handed massage. Then, within an hour or two, get your blood drawn!

Next week I’ll start posting about my medications.

[behappybeusefulbekind]

Okay, so from the perspective of a doctor who has done chronic fatigue clinics here’s some background and advice. Sorry if any of this is obvious or patronising.

Whenever you visit a doctor (in this context for first visit usually a GP / family doctor) and they’re trying to find out what’s happening with you they will be listening, and asking questions and examining you to try and put your issue into one of these classes (mostly, lets face it life is complicated and an issue can have multiple causes so could be all of these things)

Is this something imminently life threatening?

Is this something common and easily fixed / addressed?

Is this something rare or unusual I need to refer to a specialist for?

Is this something that is a problem but not one that can be easily medically fixed?

So when you’re seeing a doctor for fatigue what they’re probably thinking is:

Is this cancer?

Is this hypothyroidism/diabetes/anaemia?

Is this obstructive sleep apnoea/kidney disease/liver disease/some chronic infection/autoimmune disease?

Are you drinking too much caffeine because you’re tired then not sleeping properly? Are you too stressed to sleep? Are you too ADHD to sleep? Is this post viral fatigue syndrome or long covid or chronic fatigue?

So first thing they’ll do is ask a load of questions some of which may seem unrelated (black poos sign of internal bleeding, menstrual period frequency as lots of young people with uteruses can be anaemic from this, weight loss as sign of chronic inflammation). Snoring and neck circumference are very useful for sleep apnoea. Some of the questions may be insulting or obvious but we have to ask them as it’s amazing the amount of people who will drink a load of caffeine and swear it doesn’t affect their sleep but get benefit if they switch to decaf.

They might also ask about risk factors - things not directly related to your issue but do increase the chances of certain causes. Do you have a family history of diabetes? Do you go out walking in areas with lots of ticks full of Lyme disease? Are you a shift worker? (really knackers your sleep patterns)

They should examine you for signs and symptoms of anything flagged up on your history - for example signs of hypothyroidism, swollen glands in neck and armpit if possible chronic infection.

They will very likely do blood tests - looking for anaemia, inflammation, diabetes and liver and kidney function.

Then they will give you advice which may sound obvious but they have to address - this is the “Stop drinking caffeine and go to bed on time instead of scrolling tumblr till 1am” part - again, rather patronising but some people genuinely need to hear this. Sleep apnoea is worse if you are overweight so some doctors may ask you to loose weight first but that’s really difficult to do so I don’t and honestly CPAP machines are the best and people spontaneously loose weight after they’ve started CPAP because your whole metabolism changes when you get enough sleep and oxygen funny that.

Then depending on how overworked your GP is they will either organise a follow up appointment or say they’ll call you if there’s anything concerning on the bloods and you should call them in a few weeks if you’re still feeling tired all the time after following their advice.

If you’ve done this a few times, either seeing a different doctor or not it can be helpful to speed things up in a repeat appointment by writing things down (with a copy to leave with them for their documentation). Useful suggestions are:

Sleep diary - at least two weeks worth of what time you went to bed and when you woke up.

If you’re falling asleep during the day write that down too.

If you drink caffeine document when and what type.

Outcome of previous investigations - so if they say “oh we should check you for this” you can point to it and say I was not anaemic or hypothyroid on these dates why do you think that might have changed when symptoms are the same?

It’s often also useful to highlight what you think the problem is so they can either explicitly tell you “No I do not think you have X because Y” Or “Yes, I can see why you might be concerned about X, let’s do Z or refer you to a specialist for more investigations”.

You can also ask to be referred to a specialist! Chronic fatigue clinics have resources to investigate you and specialist counselors to help with symptom management.

Fatigue is one of those things which is so disabling but so difficult to treat. When I worked the fatigue clinic my role was to try and find an underlying medical cause that could be treated. Sometimes I did, mostly diagnosing and treating obstructive sleep apnoea or diabetes. Sometimes my assessment was “of course they’re tired all the time they’re working two jobs and a full time carer for their mum and can’t afford the time or money for making nourishing food and they’re worried about money and the general I-think-there’s-a-word-for-it-in-German depression-from-living-on-a-planet-being-destroyed-by-late-stage-capitalism.

A key thing to remember is even if there’s not an easy medical fix and there are lifestyle factors which can’t be helped there are still coping strategies (practical and psychological) which can be learned and do help. Good luck and please don’t lose hope.

How do you do doctors visits for the same thing? Like I've seen this doctor about my fatigue 5 times overs the last year, each time she orders different tests or suggests another thing to try and then a few months later I go back and it's kind of awkward to be like, yeah well, the fatigue I've had for the last 21 years is still happening... Is that how you're supposed to do it? Do you go back the week after the blood test or wait?

The last time I went was 6 months ago and I THOUGHT she referred me for a sleep study but actually I didn't have a high enough "day time sleepiness" score so I can't be referred.

Anyway I was waiting for a sleep study but that's actually not happening. So I have to just go again and I guess I just say "I'm still fatigued, what now?". Is that what you say? Is there some other way you're supposed to handle this?

I wonder if there's any point in even going because they haven't found anything so far so will they ever, so it's hard to motivate myself especially with having to also deal with the anxiety over what to say.

The "visits" are maximum 15 minutes (but usually less because you feel pressured to be quick) so you don't have much time to say a lot, especially when you have to first recap everything you've already told them and what's already been tried and for them to look up your notes and everything. It's so stressful.

[diariesofabuggygirl]

What a couple of weeks to come...

Tomorrow (today/in the morning) I’m off to ATL to see a new doctor.

He’s an MCAS specialist - we’re hoping he has some more ideas of how to more effectively treat my MCAS which could potentially make me feel better and also make my other treatments more effective. MCAS causes mass inflammation (I’m basically one big ball of inflammation) which causes your cells to be too big and tight against each other. It is therefore hard for meds to get into the cells as well as non inflamed cells.

We think ketotifin (my MCAS med I was on) might have played a part in me gaining 100 pounds back in like a year. We also think my MCAS played a part of it so who knows.

Cromolyn sodium seemed to sedate me too much and contribute to me being in bed for a couple months. 

OTC stuff doesn’t seem to be as effective.

I’m trying to stay positive, as I’m afraid he won’t have anything else to offer.

Really hoping it goes well and he has ideas.

In a few days I’m going to Baltimore to see another - more experienced - EDS knowledgeable neuro surgeon. We are looking into CCI (I already have the diagnosis but it wasn’t too extreme, so my doctor wanted me to go see the guy he learned from before going through with a dramatic surgery), possible re-tethering of my spinal cord, and anything else he can think of -like lack of blood flow/encephalitis/etc.

Then like a week after that I think? Not sure... But then I’m off to SFO to see my main bartonella etc. doctor. She’s basically the ring leader of all of my health issues. MCAS, infections, immune deficiencies, MCAS, methylation stuff. Ya know the full package of yours truly.

I looked at old pictures today trying to find good pictures of some of my symptoms for the new doctors and saw how much better I was feeling a couple of years ago. It’s exhausting to get better and then worse so many times...

I’m hoping someone we see this month will have some answers. The last puzzle piece.

[witchstone]

So...how do I tell my parents that I'm dropping out of this year and am going to see if I can finish my degree next year via correspondence?? And at the same time could they please come and pick me up

[allmybirdsofparadise]

I’m so proud of myself for getting through today, and so tired! I had a doctor’s appointment and I hadn’t slept last night because I was anxious and had pms and felt like I had the flu, but I got myself to the appointment and it went okay. He reassured me that I will 100% recover and that there is light at the end of the tunnel, which is more than I could have asked for. I’m eating some chopped apple and honeydew melon now and resting for the rest of the night

[to-read-or-not-to-read3088]

70+ disabled, neurodiverse and chronically ill authors COLLAB

This post is in collaboration with several other bloggers whose links are included here:

Artie Carden

Anniek

Hi! It’s been a while since I posted anything, but this post has been a month in the making. I have twenty books by twenty authors for my part in this collaboration, and you can check out the other parts of the collab with the links at the top of the post.

I haven’t read some of these books but almost all of them are on my to be read pile, and I did extensive research to make sure I got this right, but please let me know if there are any mistakes or if anything needs to be corrected.

1. Meet Cute Diary by Emery Lee

📷

Meet Cute Diary follows Noah Ramirez who thinks he’s an expert on romance. He must be for his blog, the Meet Cute Diary, a collection of trans happily ever afters. There’s just one problem. All the stories are fake. What started off as the fantasies of a trans boy who was afraid to step out of the closet has grown into a beacon of hope for trans readers across the globe. Noah’s world unravels when a troll exposes the blog as fiction, and the only way to save the Diary is to convince everyone that the stories are true, but he doesn’t have any proof. That’s when Drew walks into Noah’s life, and the pieces fall into place. Drew is willing to fake date Noah to save the Diary. But when Noah’s feelings grow beyond their staged romance, he realises that dating in real life isn’t the same as finding love on the page.

The author, Emery Lee, is a kid lit author, artist and YouTuber hailing from a mixed racial background. After graduating with a degree in creative writing, e’s gone on to author novels, short stories and webcomics. When away from reading and writing, you’ll likely find em engaged in art or snuggling with cute dogs.

Emery Lee is nonbinary, and uses e/em pronouns, and e’s debut book, Meet Cute Diary, features a side character who is also nonbinary (and asexual!). Emery is also neurodivergent, and frequently speaks about what its like being a writer with adhd on twitter.

Meet Cute Diary is a book I only discovered last month, when it was published, but I’m excited to read it. It has representation of all kinds, and I love any book that has even a little mention of an asexual character because its so rare to see.

2. Ace of Spades by Faridah Àbíké-Íyímídé

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At Niveus Private Academy money paves the hallways, and the students are never less than perfect. Until now. Because an anonymous texter calling themselves Aces, is bringing two students’ dark secrets to light. Devon, a talented musician, buries himself in rehearsals, but he can’t escape the spotlight when his private photos go public. Chiamaka, head girl, isn’t afraid to get what she wants, but soon everyone will know the price she has paid for power. Someone is out to get them both. Someone who holds all the aces. And they’re planning much more than a high school game.

Faridah Àbíké-Íyímídé, is the author of the instant New York Times and IndieBound bestseller, Ace of Spades, billed as ‘Get out meets Gossip Girl’. Entertainment Weekly has called it “this summer’s hottest YA debut”. She was born and raised in Croydon, South London, and Faridah moved to the Scottish Highlands for her undergraduate degree where she completed a BA in English Literature. She has established and runs and mentorship scheme for unagented writers of colour, helping them on their journey to get published. Faridah has also written for NME, The Bookseller, Readers Digest and gal-dem.

Faridah Àbíké-Íyímídé’s book is one that I pre-ordered months in advance, after discovering that I actually really liked this sub-genre of YA, and although I still haven’t read it yet (sorry!), I’m still super excited to dive into it. From what I hear, it has some gay rep, which we all know by now is something I seek out in my books.

3. Lycanthropy and Other Chronic Illnesses by Kristen O’Neal

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Priya has worked hard to pursue her pre med dreams at Stanford, but a diagnosis of chronic Lyme disease during her sophomore year sends her straight back to her loving but overbearing family in New Jersey and leaves her wondering if she’ll ever be able to return to the way things were. Thankfully she has her online pen pal, Brigid, and the rest of the members of “oof ouch my bones,” a virtual support group that meets on Discord to crack jokes and vent about their own chronic illnesses. When Brigid suddenly goes offline, Priya does something very out of character; she steals the family car and drives to Pennsylvania to check on Brigid. Priya isn’t sure what to expect, but it isn’t the creature that’s shut in the basement. With Brigid nowhere in sight, Priya begins to puzzle together an impossible but obvious truth: the creature might be werewolf – and the werewolf might be Brigid. As Brigid’s unique condition worsens, their friendship will be deepened and challenged in unexpected ways, forcing them to reckon with their own ideas of what it means to be normal.

Kristen O’Neal is a freelance writer who’s written for sites like Buzzfeed Reader, Christianity Today, Birth.Movies.Death, LitHub and Electric Literature. She writes about faith, culture, and unexplained phenomena. Her debut novel, Lycanthropy and Other Chronic Illnesses is based on her own experiences with being chronically ill. Kristen has two autoimmune disorders and “a number of other problems and issues” with her body. According to her website, she is doing much better than she used to, but still has flares somewhat regularly.

I cannot describe the feeling of seeing a published book with the best group chat name I have ever seen. Oof ouch my bones is absolutely something that I would be part of if it really existed, because its just such a mood, and funny at the same time. I pre ordered this book too, but like all the others, I still haven’t gotten around to reading it. I’m super excited about it though and cannot recommend it enough.

4. Only Mostly Devastated by Sophie Gonzales

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Will Tavares is the dream summer fling – he’s fun, affectionate, kind – but just when Ollie thinks he’s found his Happily Ever After, summer vacation ends, and Will stops texting Ollie back. Now Ollie is one prince short of his fairy tale ending, and to complicate the fairy tale further, a family emergency sees Ollie uprooted and enrolled at a new school across the country. Which he minds a little less when he realises it’s the same school Will goes to…except Ollie finds out that the sweet, comfortably queer guy he knew from summer isn’t the same one attending Collinswood High. This Will is a class clown, closeted – and to be honest, a jerk. Ollie has no intention of pining after a guy who clearly isn’t ready for a relationship, especially since this new, bro-y jock version of Will seems to go from hot to cold every other week. But then Will starts “coincidentally” popping up in every area of Ollie’s life, from music class to the lunch table, and Ollie finds his resolve weakening. The last time he gave Will his heart, Will handed it back to him trampled and battered. Ollie would have to be an idiot to trust him with it again. Right? Right.

Sophie Gonzales was born and raised in Whyalla, South Australia, where the Outback Meets the Sea. She now lives in Melbourne, where there’s no outback in sight. Sophie’s been writing since the age of five, when her mother decided to help her type out one of the stories she had come up with in the bathtub. They ran into artistic differences when five-year-old Sophie insisted that everybody die in the end, while her mother wanted the characters to simply go out for a milkshake. Since then, Sophie has been completing her novels without a transcript. Sophie Gonzales tweets about her experiences with ADHD on her twitter.

Only mostly devasted is one of the few books on this list that I’ve read. I read the whole thing in one sitting because I just couldn’t put it down, which is weird because I normally don’t read contemporary at all. I have recommended this book to literally everyone I know, and even bought my best friend a copy to convince her to read it.

5. The Bone Houses by Emily Lloyd Jones

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Seventeen-year-old Aderyn ("Ryn") only cares about two things: her family, and her family's graveyard. And right now, both are in dire straits. Since the death of their parents, Ryn and her siblings have been scraping together a meagre existence as gravediggers in the remote village of Colbren, which sits at the foot of a harsh and deadly mountain range that was once home to the fae. The problem with being a gravedigger in Colbren, though, is that the dead don't always stay dead. The risen corpses are known as "bone houses," and legend says that they're the result of a decades-old curse. When Ellis, an apprentice mapmaker with a mysterious past, arrives in town, the bone houses attack with new ferocity. What is it that draws them near? And more importantly, how can they be stopped for good? Together, Ellis and Ryn embark on a journey that will take them deep into the heart of the mountains, where they will have to face both the curse and the long-hidden truths about themselves.

Emily Lloyd-Jones grew up on a vineyard in rural Oregon, where she played in evergreen forests and learned to fear sheep. After graduating from Western Oregon University with an English degree, she enrolled in the publishing program at Rosemont College just outside of Philadelphia. She currently resides in Northern California.

Another book on my to be read pile that I’m super excited to read, but still haven’t gotten around to. This one features disability rep, but because I haven’t read it, I don’t know much more, sorry guys.

6. Mooncakes by Susanne Walker and Wendy Xu

📷Nova Huang knows more about magic than your average teen witch. She works at her grandmothers' bookshop, where she helps them loan out spell books and investigate any supernatural occurrences in their New England town. One fateful night, she follows reports of a white wolf into the woods, and she comes across the unexpected: her childhood crush, Tam Lang, battling a horse demon in the woods. As a werewolf, Tam has been wandering from place to place for years, unable to call any town home. Pursued by dark forces eager to claim the magic of wolves and out of options, Tam turns to Nova for help. Their latent feelings are rekindled against the backdrop of witchcraft, untested magic, occult rituals, and family ties both new and old in this enchanting tale of self-discovery.

Suzanne Walker is a Chicago-based writer and editor. She is co-creator of the Hugo-nominated graphic novel Mooncakes (2019, Lion Forge/Oni Press). Her short fiction has been published in Clarkesworld and Uncanny Magazine, and she has published nonfiction articles with Uncanny Magazine, StarTrek.com, Women Write About Comics, and the anthology Barriers and Belonging: Personal Narratives of Disability. She has spoken at numerous conventions on a variety of topics ranging from disability representation in sci-fi/fantasy to comics collaboration.

Wendy Xu is a Brooklyn-based illustrator and comics artist. She is co-creator of and currently draws the webcomic Mooncakes. Her work has been featured on Tor.com, as part of the Chinese American: Exclusion/Inclusion exhibit permanently housed at the Chinese Historical Society of America, and in Shattered: The Asian American Comics Anthology. She occasionally teaches at the Asian American Writers Workshop and currently works as an assistant editor curating young adult and children’s books.

Suzanne Walker suffers from hearing loss, something that she wrote into her graphic novel, Mooncakes, making Nova hard of hearing. I read this in a few years ago as an advance reader copy for Netgalley and it was honestly one of the best graphic novels I have ever read. The main characters are Chinese American, queer AND magic, which is an amazing combination of representation.

7. Six of Crows by Leigh Bardugo

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Ketterdam: a bustling hub of international trade where anything can be had for the right price—and no one knows that better than criminal prodigy Kaz Brekker. Kaz is offered a chance at a deadly heist that could make him rich beyond his wildest dreams. But he can’t pull it off alone… A convict with a thirst for revenge A sharpshooter who can’t walk away from a wager A runaway with a privileged past A spy known as the Wraith A Heartrender using her magic to survive the slums A thief with a gift for unlikely escapes Kaz’s crew is the only thing that might stand between the world and destruction—if they don’t kill each other first.

Leigh Bardugo is a #1 New York Times bestselling author of fantasy novels and the creator of the Grishaverse (now a Netflix original series) which spans the Shadow and Bone Trilogy, the Six of Crows Duology, The Language of Thorns, and King of Scars—with more to come. Her short stories can be found in multiple anthologies, including the Best American Science Fiction & Fantasy. Her other works include Wonder Woman: Warbringer and Ninth House (Goodreads Choice Winner for Best Fantasy 2019) which is being developed for television by Amazon Studios.

Leigh grew up in Southern California and graduated from Yale University. These days she lives and writes in Los Angeles.

In the acknowledgements section of Six of Crows, Bardugo reveals she suffers from osteonecrosis and sometimes needs to use a cane; this was a source of inspiration for one of the story's six protagonists, master thief and gang boss Kaz Brekker, who uses a cane.

I read Six of Crows a few years ago and I really loved it. I’m not going to pretend I managed to finish the whole Grishaverse series, because I haven’t even gotten close yet, but it really showed Kaz’s struggles with his disability, and his mental health. This is part of a duology, and the duology is part of a large series of books with another duology and trilogy, but Six of Crows can be read without reading the others.

8. Hyperbole and A Half by Allie Brosh

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This is a book I wrote. Because I wrote it, I had to figure out what to put on the back cover to explain what it is. I tried to write a long, third-person summary that would imply how great the book is and also sound vaguely authoritative--like maybe someone who isn’t me wrote it--but I soon discovered that I’m not sneaky enough to pull it off convincingly. So, I decided to just make a list of things that are in the book: Pictures Words Stories about things that happened to me Stories about things that happened to other people because of me Eight billion dollars* Stories about dogs The secret to eternal happiness* *These are lies. Perhaps I have underestimated my sneakiness!

Allie is an American blogger, writer and comic artist best known for her blog in the form of a webcomic Hyperbole and a Half. Brosh started Hyperbole in 2009 and told stories from her life in a mix of text and intentionally crude illustrations. She has published two books telling stories in the same style, both of which have been New York Times bestsellers. Brosh lives with severe depression and ADHD, and her comics on depression have won praise from fans and mental health professionals.

Another book on my tbr that I just haven’t gotten around to but really want to.

9. The Rest of Us Just Live Here by Patrick Ness

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What if you aren’t the Chosen One? The one who’s supposed to fight the zombies, or the soul-eating ghosts, or whatever the heck this new thing is, with the blue lights and the death? What if you’re like Mikey? Who just wants to graduate and go to prom and maybe finally work up the courage to ask Henna out before someone goes and blows up the high school. Again. Because sometimes there are problems bigger than this week’s end of the world, and sometimes you just must find the extraordinary in your ordinary life. Even if your best friend is worshipped by mountain lions...

Patrick Ness, an award-winning novelist, has written for England’s Radio 4 and Sunday Telegraph and is a literary critic for The Guardian. He has written many books, including the Chaos Walking Trilogy, The Crash of Hennington, Topics About Which I Know Nothing, and A Monster Calls. He has won numerous awards, including the Guardian Children’s Fiction Prize, the Booktrust Teenage Prize, and the Costa Children’s Book Award. Born in Virginia, he currently lives in London.

Patrick Ness has written about OCD and anxiety in at least two of his books, inspired by his own experiences with the two disorders and how it affects him (The Rest of Us Just Live Here & Release)

10. Every Heart A Doorway by Seanan McGuire

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Eleanor West’s Home for Wayward Children No Solicitations No Visitors No Quests Children have always disappeared under the right conditions; slipping through the shadows under a bed or at the back of a wardrobe, tumbling down rabbit holes and into old wells, and emerging somewhere... else. But magical lands have little need for used-up miracle children. Nancy tumbled once, but now she’s back. The things she’s experienced... they change a person. The children under Miss West’s care understand all too well. And each of them is seeking a way back to their own fantasy world. But Nancy’s arrival marks a change at the Home. There’s a darkness just around each corner, and when tragedy strikes, it’s up to Nancy and her new-found schoolmates to get to the heart of the matter. No matter the cost.

Seanan lives in an idiosyncratically designed labyrinth in the Pacific Northwest, which she shares with her cats, Alice and Thomas, a vast collection of creepy dolls and horror movies, and sufficient books to qualify her as a fire hazard. She has strongly held and oft-expressed beliefs about the origins of the Black Death, the X-Men, and the need for chainsaws in daily life.

Years of writing blurbs for convention program books have fixed Seanan in the habit of writing all her bios in the third person, to sound marginally less dorky. Stress is on the "marginally." It probably doesn't help that she has so many hobbies.

Seanan was the winner of the 2010 John W. Campbell Award for Best New Writer, and her novel Feed (as Mira Grant) was named as one of Publishers Weekly's Best Books of 2010. In 2013 she became the first person ever to appear five times on the same Hugo Ballot.

Seanan McGuire has an invisible disability due to herniated disks in her spine. She is slowly coming to terms with this, and talks about it occasionally on her twitter, and about the struggles she faces.

I loved this book, and so did my best friend. We both read it in one sitting and talked nonstop about it afterwards. Although short, its filled with amazing characters, plot, and representation (asexual character!!)

11. Girls of Paper and Fire by Natasha Ngan

Each year, eight beautiful girls are chosen as Paper Girls to serve the king. It's the highest honour they could hope for...and the most demeaning. This year, there's a ninth. And instead 📷of paper, she's made of fire. In this richly developed fantasy, Lei is a member of the Paper caste, the lowest and most persecuted class of people in Ikhara. She lives in a remote village with her father, where the decade-old trauma of watching her mother snatched by royal guards for an unknown fate still haunts her. Now, the guards are back and this time it's Lei they're after -- the girl with the golden eyes whose rumoured beauty has piqued the king's interest. Over weeks of training in the opulent but oppressive palace, Lei and eight other girls learns the skills and charm that befit a king's consort. There, she does the unthinkable -- she falls in love. Her forbidden romance becomes enmeshed with an explosive plot that threatens her world's entire way of life. Lei, still the wide-eyed country girl at heart, must decide how far she's willing to go for justice and revenge.

Natasha Ngan is a writer and yoga teacher. She grew up between Malaysia, where the Chinese side of her family is from, and the UK. This multicultural upbringing continues to influence her writing, and she is passionate about bringing diverse stories to teens. Ngan studied Geography at the University of Cambridge before working as a social media consultant and fashion blogger. She lives in France with her partner, where they recently moved from Paris to be closer to the sea. Her novel Girls of Paper and Fire was a New York Times bestseller. Natasha has a heart condition, and talks about her struggles with her health, and gives updates on her health and her books on twitter.

I’ve heard a lot about this book, but for trigger warning reasons it sadly isn’t on my to be read list. Everything I’ve heard about it says its an amazing book though, and the cover is beautiful.

12. Queens of Geek by Jen Wilde

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Three friends, two love stories, one convention: this fun, feminist love letter to geek culture is all about fandom, friendship, and finding the courage to be yourself. Charlie likes to stand out. She’s a vlogger and actress promoting her first movie at SupaCon, and this is her chance to show fans she’s over her public breakup with co-star Reese Ryan. When internet-famous cool-girl actress Alyssa Huntington arrives as a surprise guest, it seems Charlie’s long-time crush on her isn’t as one-sided as she thought. Taylor likes to blend in. Her brain is wired differently, making her fear change. And there’s one thing in her life she knows will never change: her friendship with her best guy friend Jamie—no matter how much she may secretly want it to. But when she hears about a fan contest for her favourite fandom, she starts to rethink her rules on playing it safe.

Jen Wilde is the YA author of QUEENS OF GEEK, THE BRIGHTSIDERS and GOING OFF SCRIPT. She writes unapologetically queer stories about geeks, rockstars, and fangirls who smash the patriarchy in their own unique ways. Her books have been praised in Teen Vogue, Buzzfeed, Autostraddle, Vulture and Bustle. Originally from Australia, Jen now lives in NYC where she spends her time writing, drinking too much coffee and binging reality TV.

Researching for this collab was the first time this book popped up on my radar as something I might be interested in reading. Jen Wilde, the author, is herself autistic and suffers from anxiety, which gives the narrative “authenticity that is lacking in similar books” according to socialjusticebooks.org.

13. The Upside of Unrequited by Becky Albertalli

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Seventeen-year-old Molly Peskin-Suso knows all about unrequited love—she’s lived through it twenty-six times. She crushes hard and crushes often, but always in secret. Because no matter how many times her twin sister, Cassie, tells her to woman up, Molly can’t stomach the idea of rejection. So, she’s careful. Fat girls always have to be careful. Then a cute new girl enters Cassie’s orbit, and for the first time ever, Molly’s cynical twin is a lovesick mess. Meanwhile, Molly’s totally not dying of loneliness—except for the part where she is. Luckily, Cassie’s new girlfriend comes with a cute hipster-boy sidekick. Will is funny and flirtatious and just might be perfect crush material. Maybe more than crush material. And if Molly can win him over, she’ll get her first kiss and she’ll get her twin back. There’s only one problem: Molly’s co-worker Reid. He’s an awkward Tolkien superfan with a season pass to the Ren Faire, and there’s absolutely no way Molly could fall for him. Right?

Becky Albertalli is the author of the acclaimed novels Simon vs. the Homo Sapiens Agenda (film: Love, Simon), The Upside of Unrequited, and Leah on the Offbeat. She is also the co-author of What If It's Us with Adam Silvera. A former clinical psychologist who specialized in working with children and teens, Becky lives with her family in Atlanta.

Becky Albertalli has generalised anxiety disorder (GAD), and has spoken about it in several interviews, which you can find online. She has also written several characters in her books who also suffer with anxiety. Her first book, Simon vs the Homosapien’s Agenda (or Love, Simon), is the only book of hers that I have read so far, and I loved it. It was the first contemporary book that I read and actually enjoyed.

14. Carve the Mark by Veronica Roth

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Cyra is the sister of the brutal tyrant who rules the Shotet people. Cyra’s current gift gives her pain and power—something her brother exploits, using her to torture his enemies. But Cyra is much more than just a blade in her brother’s hand: she is resilient, quick on her feet, and smarter than he knows. Akos is the son of a farmer and an oracle from the frozen nation-planet of Thuvhe. Protected by his unusual currentgift, Akos is generous in spirit, and his loyalty to his family is limitless. Once Akos and his brother are captured by enemy Shotet soldiers, Akos is desperate to get his brother out alive—no matter what the cost. Then Akos is thrust into Cyra's world, and the enmity between their countries and families seems insurmountable. Will they help each other to survive, or will they destroy one another?

Veronica Roth is the #1 New York Times best-selling author of the Divergent series (Divergent, Insurgent, Allegiant, and Four: A Divergent Collection), the Carve the Mark duology (Carve the Mark, the Fates Divide), The End and Other Beginnings collection of short fiction, and many short stories and essays. Her first book for adult audiences, Chosen Ones, is out now. She lives in Chicago.

Veronica Roth suffers from anxiety, like a lot of the authors on this list, and talks about it in interviews. A quote from one: "I've had an anxiety disorder my whole life, so I've been to therapy on and off throughout, before books and after books. I went back and tried to talk through some of the things I was feeling and experiencing, and it was helpful."

I’ve never read any of her books, not even the hugely famous Divergent trilogy, though they’ve been on my radar for years. I’d love to get into her books at some point, but it might take me a few years.

15. How to be Autistic by Charlotte Amelia Poe

📷An urgent, funny, shocking, and impassioned memoir by the winner of the Spectrum Art Prize 2018, How To Be Autistic by Charlotte Amelia Poe presents the rarely shown point of view of someone living with autism. Poe’s voice is confident, moving and often funny, as they reveal to us a very personal account of autism, mental illness, gender and sexual identity. As we follow Charlotte’s journey through school and college, we become as awestruck by their extraordinary passion for life as by the enormous privations that they must undergo to live it. From food and fandom to body modification and comic conventions, Charlotte’s experiences through the torments of schooldays and young adulthood leave us with a riot of conflicting emotions: horror, empathy, despair, laugh-out-loud amusement and, most of all, respect. For Charlotte, autism is a fundamental aspect of their identity and art. They address the reader in a voice that is direct, sharply clever and ironic. They witness their own behaviour with a wry humour as they sympathise with those who care for them, yet all the while challenging the neurotypical narratives of autism as something to be ‘fixed’. This is an exuberant, inspiring, life-changing insight into autism from a viewpoint almost entirely missing from public discussion. ‘I wanted to show the side of autism that you don’t find in books and on Facebook. My story is about survival, fear and, finally, hope. There will be parts that make you want to cover your eyes, but I beg you to read on, because if I can change just one person’s perceptions, if I can help one person with autism feel like they’re less alone, then this will all be worth it.’ Charlotte Amelia Poe is a self-taught artist and writer living in Lowestoft, Suffolk. They also work with video and won the inaugural Spectrum Art Prize with the film they submitted, 'How to Be Autistic’. Myriad published Charlotte's memoir, How to Be Autistic, in September 2019.

Another book I didn’t know about until researching for this post, but I really want to read it because I haven’t read many books about autism, and practically none of them were actually written by someone who actually is autistic. Charlotte uses they/them pronouns.

16. Ask me about my Uterus by Abby Norman

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For any woman who has experienced illness, chronic pain, or endometriosis comes an inspiring memoir advocating for recognition of women's health issues In the fall of 2010, Abby Norman's strong dancer's body dropped forty pounds and grey hairs began to sprout from her temples. She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis. In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a pre-existing condition.

Abby Norman’s debut book, ASK ME ABOUT MY UTERUS: A Quest to Make Doctors Believe in Women’s Pain, was published by Bold Type Books (Hachette Book Group) in 2018, with advance praise from Gillian Anderson, Lindsey Fitzharris, Jenny Lawson, and Padma Lakshmi.

The book was praised by The New York Times Book Review, The Wall Street Journal, New York Magazine, The Washington Post, The Sunday Times, The Irish Times, Literary Review, The Times Literary Supplement, The New Republic, Book Riot, Toronto Star, ELLE, Health Magazine, Undark Magazine, BUST Magazine, Bitch Magazine, Ms. Magazine, BBC Radio 5, and other international media outlets.

​In 2019, the paperback edition was published in the U.S. and the Korean translation in Seoul (Momento Publishing/Duran Kim Agency).

​Her work has been featured in Harper’s, Medium, The Independent, Literary Hub, The Rumpus, Mental Floss, Atlas Obscura, and elsewhere. Interviews and profiles have been seen and heard, including NPR/WNYC, BBC, Anchor.fm, The New York Times, Playboy, Forbes, Glamour, Women’s Health, and Bitch Magazine.

Abby Norman suffers from endometriosis, which was a large part of why she wrote her book, and why she advocates so hard for fellow patients at conferences such as Stanford University’s Stanford Medicine X and the Endometriosis Foundation of America’s medical conference and Patient Day. She is

Abby has served on technical expert panels including the National Partnership for Women and Families’ CORE Network (Yale University), the American Congress of Obstetricians and Gynecologists (ACOG), the Centres for Medicare and Medicaid, The Society for Women’s Health Research (SWHR), and Health Affairs.

​In 2019, Abby contributed to a paper addressing research gaps and unmet needs in endometriosis published in the American Journal of Obstetrics and Gynecology.

This book is definitely one I will be adding to my to be read list, as someone who (unfortunately) also has a uterus, it is important to be informed. And Abby sounds like such a badass who wrote a whole book about her chronic illness to help others with the same condition.

17. Stim: Autistic Anthology by Lizzie Huxley-Jones

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Around one in one hundred people in the UK are autistic, yet there remains a fundamental misunderstanding of what autism is. It is rare that autistic people get to share their own experiences, show how creative and talented and passionate they are, how different they are from media stereotypes. This insightful and eye-opening collection of essays, fiction and visual art showcases the immense talents of some of the UK's most exciting writers and artists - who just happen to be on the spectrum. Here they reclaim the power to speak for themselves and redefine what it means to be autistic. Stim invites the reader into the lives, experiences, minds of the eighteen contributors, and asks them to recognise the hurdles of being autistic in a non-autistic world and to uncover the empathy and understanding necessary to continue to champion brilliant yet unheard voices.

Lizzie (Hux) Huxley-Jones is an autistic author and editor based in London. They are the editor of Stim, an anthology of autistic authors and artists, which was published by Unbound in April 2020 to coincide with World Autism Awareness Week. They are also the author of the children’s biography Sir David Attenborough: A Life Story. They can be found editing at independent micropublisher 3 of Cups Press, and they also advise writers as a freelance sensitivity reader and consultant. In their past career lives, they have been a research diver, a children’s bookseller and digital communications specialist.

I wasn’t even aware that there was an anthology out there by an autistic author, about autism, but now that I do I need to read it.

18. Chimera by Jaecyn Bonê

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Creatures unlike you've imagined before! Welcome to a world where myths and legends collide to create a new breed of monster. Savage and soulful, these monstrosities combine to form the mighty Chimera. In this anthology, talented writers weave 10 tales of fantastical beasts. Featuring stories by: Matt Bliss Jaecyn Boné Alexis L. Carroll Chris Durston Dewi Hargreaves Stephen Howard Samuel Logan Vincent Metzo Braden Rohl Michelle Tang

Jaecyn is a queer, non-binary, disabled Asian-American writer and digital artist fascinated by faeries.

Most of their writing involves wlw romance and faery-inspired creatures. Their first novel, Farzana's Spite is a 10-year-old work in progress and the first novel in The Faerth series. Other works include The Killing Song (novel) and Colour Unknown (short), both of which are also part of the Faerth universe.

Jaecyn's art can be described as a neorealistic pop art style with cel shading. They began their digital art journey with a 5-year-old refurbished iPad using their finger as a stylus and immediately fell in love. They do digital download commissions as well as sell prints of their artwork.

Jaecyn is the Co-Editor in Chief of the Limeoncello Magazine, an online Own Voices literary magazine which debuted its first issue on March 21st, 2021.

When not writing, drawing, or chasing after their two children, they can be found either gardening or practicing their ukulele.

None of Jaecyn Boné’s books are published yet as they are still in the stage of querying, but they contributed to the above anthology, along with nine other authors. I had no idea that this anthology existed, and now I’ll be closely following this author to see when their books get published!

19. Forest of Souls by Lori M Lee

Sirscha Ashwyn comes from nothing, but she’s intent on becoming something. After years of training to become the queen’s next royal spy, her plans are derailed when shamans attack 📷and kill her best friend Saengo. And then Sirscha, somehow, restores Saengo to life. Unveiled as the first soul guide in living memory, Sirscha is summoned to the domain of the Spider King. For centuries, he has used his influence over the Dead Wood—an ancient forest possessed by souls—to enforce peace between the kingdoms. Now, with the trees growing wild and untamed, only a soul guide can restrain them. As war looms, Sirscha must master her newly awakened abilities before the trees shatter the brittle peace, or worse, claim Saengo, the friend she would die for.

Lori M. Lee is the author of speculative novels and short stories. Her books include PAHUA AND THE SOUL STEALER (Disney/Rick Riordan Presents), FOREST OF SOULS and the sequel BROKEN WEB (Page Street), and more. She’s also a contributor to the anthologies A THOUSAND BEGINNINGS AND ENDINGS and COLOR OUTSIDE THE LINES. She considers herself a unicorn fan, enjoys marathoning TV shows, and loves to write about magic, manipulation, and family.

Lori struggles with anxiety, and the common symptoms like fatigue but she doesn’t let this stop her writing amazing books. I read Forest of Souls earlier this year, and it was seriously one of the best books I’ve ever read. I loved the magic, the characters, the world building. Everything about it, including the plot twist ending that had me losing my mind at 2am, was just so unlike anything I had read in any other fantasy before.

20. A Song of Wraiths and Ruin by Roseanne A Brown

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For Malik, the Solstasia festival is a chance to escape his war-stricken home and start a new life with his sisters in the prosperous desert city of Ziran. But when a vengeful spirit abducts Malik’s younger sister, Nadia, as payment into the city, Malik strikes a fatal deal—kill Karina, Crown Princess of Ziran, for Nadia’s freedom. But Karina has deadly aspirations of her own. Her mother, the Sultana, has been assassinated; her court threatens mutiny; and Solstasia looms like a knife over her neck. Grief-stricken, Karina decides to resurrect her mother through ancient magic . . . requiring the beating heart of a king. And she knows just how to obtain one: by offering her hand in marriage to the victor of the Solstasia competition. When Malik rigs his way into the contest, they are set on a course to destroy each other. But as attraction flares between them and ancient evils stir, will they be able to see their tasks to the death?

Roseanne “Rosie” A. Brown was born in Kumasi, Ghana and immigrated to the wild jungles of central Maryland as a child. Writing was her first love, and she knew from a young age that she wanted to use the power of writing—creative and otherwise—to connect the different cultures she called home. She graduated from the University of Maryland with a Bachelor’s in Journalism and was also a teaching assistant for the school’s Jiménez-Porter Writers’ House program. Her journalistic work has been featured by Voice of America among other outlets.

On the publishing side of things, she has worked as an editorial intern at Entangled Publishing. Rosie was a 2017 Pitch Wars mentee and 2018 Pitch Wars mentor. Rosie currently lives outside Washington D.C., where in her free time she can usually be found wandering the woods, making memes, or thinking about Star Wars.

Roseanne is another author that struggles with anxiety and wrote one of her two main characters with generalised anxiety disorder (GAD), despite it being a fantasy. I don’t even think I can name a fantasy that had a character with anxiety represented so well. This was a book I read around the same time as Forest of Souls, and I loved it. The cover was beautiful, the characters were brilliant, and I just loved the world building, the magic, and the plot. It was just different to the usual fantasy books I read, and I enjoyed the variation so much I’ve had the sequel pre ordered almost a year in advance.

So, this was my 20 books by 20 chronically ill, disabled or neurodiverse authors list. Blurbs and synopsis were compiled between Goodreads and author websites, and bios were found either on Goodreads, author websites or on amazon author pages. All the information about their chronic illnesses, disabilities or neurodivergence was found online, where they had either explicitly said it or written about it, but if I have something wrong, please let me know so I can fix it!

If you have any other suggestions or know any other books and authors that should be on this list, please let me know and I’ll do my best to add it to the list as soon as possible.

Thanks for reading 😊