Happy 6th birthday to our pretty little baby 💝 if you know @ChronicallyC you know Aisling is her whole world 🥹 dream girl is the best doghter, granddoghter, niece, and now big sister 🥰 love celebrating the sweetest silliest menace ever everyday 🥳
Art made of Disabled artists art ✨
It’s been a minute since I’ve made/posted any art but found out about a disability pride disability arts event through @jtknoxroxs and got to meet them & see their incredible art in person Saturday. It was so lovely to see all the incredible artists! i was inspired to make some art yesterday from bed. I included c & my fits we wore to the event. The design on my shirt is made by the lovely @sun.not.sunny . I steal this from c so often even though i got it for her lol. Check out their shop in their bio and support them! I also included lots of stickers from my bestie @bogbatart a collage queen. Always appreciate our friendship & the art they share with everyone. check out their shop in their bio as well! They just dropped new items for July!
On another note this collage includes some things about me being neurodivergent. This is something i haven’t talked about a lot specifically. Though i haven’t gotten tested as I’ve been told it would be hard to really pinpoint things due to me having so many conditions and factors… i have had multiple therapists talk to me about autism and ADHD and i honestly can’t unsee it now. I always felt a sense of being understood by the neurodivergent community similar to how i felt with queer people before i realized i wasn’t just an ally to both. Disability helped me find my queerness and embrace coming out after having people know I’m different as a Disabled person already first. I never knew what i was going through as a kid, & this community is helping me to accept and learn to navigate living as a person with AuDHD and CPTSD. As I’ve gotten sicker I’ve gotten more overstimulated and struggle to mask it. It’s been freeing & terrifying to be myself out of not having the capacity to hide anymore. It’s been a journey. I’m honestly going through so much while processing how much this has always affected my life & how I’ve been treated/viewed for it.
Check out my channel where i share Disabled artists and chronically ill creatives. Happy Disability pride month from this enraged autistic who always will be obsessed with art! An outlet that always helps me make sense of myself as i learn & grow.
3 years of giggles, kisses, & cuddles. through all the medical madness & chronic chaos. i wouldn’t have it any other way 🥰 here’s to a million more! first video from when we first met in person 🩵 love you cutie @ChronicallyC 🤭
Happy Disability Pride Month (from @ChronicallyC & I) As July ends our Disabled joy, love, and existence as a whole is something we continue to fight for. Existing out of spite. Learning to romanticize & embrace the moments we have. Not only despite the tough times but within them.
I often think about how it’s viewed as a bad thing to romanticize illness. It’s no wonder people can’t imagine Disabled people being loved. We are taught we are not deserving of it. Romance. Or even just platonic love. To simply be cared for.
Existing through the medical trauma. Knowing we are loved. It makes this life so much easier. worth living for. There are many people who have gotten us through recent events that we are forever grateful to. you know who you are. this community has changed my life. meeting C & so many of you who are now family to me. It’s hard i won’t lie to you. being sick. taking care of someone so ill. seeing them in pain. knowing sometimes there’s nothing i can do. wishing i could fix some of the most deeply engrained ableist practices in this world. watching people ignore & deny our painful reality. it’s a grief i will never get over.
The layers of grief we & so many of our loved ones experience just by being Disabled. being told we’re too “complicated” for having a body that doesn’t function properly. the neglect. the heartbreak. it’s never ending. video calling our loved ones to get eachother through. texting my day ones updates during emergencies. crises. existing in survival mode wrecks the mind, body, & soul. do we even have a chance at love?
and to that i say it’s about what love means to you. i have had to find love in the darkest places. i have been struggling with that. feeling like i am missing out. behind. dreaming of what it’s like to be able bodied. or even just how things have changed. not like they were before. and while I am grieving what i am missing i am also recognizing new things that i am loving.
Disability is complex. it’s more than a love/hate relationship. That is something I am processing. not only a good or bad thing. Just simply life as it is for me. in the midst of all this pain my heart is so full.
in the last 3 months i’ve had bacteremia 2x, multiple PEs, pneumonia, a hard fall, & a wrist that broke which no one can figure out how/when/why. been admitted twice + countless er trips. acquired enough medical trauma for many lifetimes. & been sent into freefall in almost every sense.
thanks so much to all my friends & iman’s friends who have checked in on me during this ridiculous time. i love you all greatly 💖 your msgs have kept me going
its hard to know what is coming next for me especially now that my life looks so different w/o a CVC & my iv meds. i’m very scared
send all the love & good vibes this way pls bc i really need it ✨
📺 Breaking News‼️ @ChronicallyC & I on @PBS Weekend @NewsHour ! The Disabled & Dating segment went live right before Valentine’s Day! #PBS #PBSNewsWeekend
As I sit here tonight typing this up, C is in the ER. it’s been a little over a week since her birthday & a little more since Valentine’s Day. What if i told you she ended up at the ER right after Valentine’s Day last year? Her last chance to be seen at pediatrics before her birthday! that is the reality so many of us live separately within a life of chronic illness & Disability. Between the two of us we spend most of our lives together focused on medical care.
living together after being together for 2 years. People would love to hear what obstacles we face. it’s only brought us closer. We don’t need to give people another reason to believe what so many assume. we fight against so much just by existing as we are. teaching us patience and understanding through caring for one another.
Connecting with @ClaireMufson through @JacquelineeChild of @DateabilityApp (also included in this) brought such light to our lives in the midst of hard times. i had the chance to speak to Claire & keep in touch through her process as the producer. What was to be recorded as a FaceTime long distance date turned into a cameraman capturing us in person together sharing our story. At the end of June when we filmed, i was just starting to process recent traumatic events. this topic is already so vulnerable for so many of us. i appreciated the consideration within the sensitive subject and loved getting to connect with the people behind the making of the final product. doing it with c eased my nerves immensely.
We were not expecting 3 minutes worth of footage of us in between lots of other community sharing their experiences together. We are honored and blessed to have gotten to represent some of the many intersectional identities between us both together.
Being in the @NYTimes piece written @ByFortesa right after C & i just started dating i felt so out of place. that hasn’t changed a lot. more than anything so many have changed my life by sharing their stories & continue to so i hope to do the same for others out there ❤️🩹
Take a look at my girlfriend she’s the only one i got 🤞🏾🫀@ChronicallyC
Celebrating my love always! February being when everything began… ✍🏾
my whole world. everything i always wished for and more in a best friend…turned girlfriend 🤭
C,
Ami tomake bhalobasi habibti 🩵
my love. you have brought me so much joy in the short time we’ve known each other. feels like we constantly are fighting the world existing as we are. doing this thing called life together. unlearning hegemony with each other. forever love getting to know you. your passions. all that makes you the beautiful soul you are.
you bring me laughter with your contagious giggles. laughing so hard it hurts. always in tears with you. you are my comfort. in the good and the bad times. my home. mi corazón.
you always give me my flowers & i hope to give you yours forevermore 💐
yours,
Mani 💌
Update 1/13/24
I meant to update after surgery but things got very chaotic in the worst way very quickly.
The surgery was good and resulted very well! Apparently my wrist was so messed up he had to fold my tendon over on itself & try to construct a new one. My surgeon also said there was enough severe arthritis that it looked more like a 70y/o’s arm rather than a 22y/o’s. I left in a cast. I saw the surgeon a week later & got the cast off & was very pleased with the results & how well he did w/ my tattoo. Been in/will be in a muenster splint for the coming weeks to stop my arm rotation to allow full healing. Starting hand therapy soon too.
Now for craziness
For surgery, I had to stop my immunosuppressive med for quite a few weeks which hit me HARD. I was in agony everywhere as well as the worst GI symptoms and was just miserable for weeks. Every day felt the same and I couldn’t leave bed—simply going to the bathroom 5 metres away was an ordeal.. Since we saw the incisions had healed well, God is good, I was able to go back on my immunosuppressive. I thought this would fix most of the pain and problems I was having, as I was starting to have new symptoms pop up and was not able to handle it on top of everything else. One of these symptoms was a headache; I never get headaches.
Long story short, I went to the ER 4x starting on Christmas Eve until 1/6, including beginning the new year there. First to make sure I didn’t have a clot in my brain, then serotonin syndrome, then electrolyte imbalance due to migraine, then finally sent there by my neurologist bc she was concerned by my symptoms. So now I am in status migranosis and have what seems to be a permanent migraine :)
However, the reason I go to my specific hospital, I have quickly gotten treatment & some that I know other migraine-sufferers take years to receive. I am incredibly blessed to have gotten a really good neurologist who I really like & that she is taking good care of me.
Just to be safe we did a lumbar puncture & I am waiting to get all the results from that.
Love y’all sm 💖
hey long time no c 💖
here’s what you missed medically in the past year
•iv fluids taken away bc of medical neglect causing chronic dehydration
•temporary NJ tube for ONLY WATER while awaiting for testing for said dehydration
•gastroparesis causing me to throw up said tube multiple times lol
•chronic dehydration causing several pulmonary embolisms, pulmonary infarctions, & fluid in my lungs
•restarting iv fluids & being told to be careful to not accidentally drown myself bc of heart issues
•chronic dehydration causing issues w chronic uti causing abx issues
•abt to lose my health insurance again 🥲
•my wrist tearing in multiple places for ✨no reason✨
so w/ that last one its at the point that the arthritis is destroying the joints & ligaments & the tears must be repaired. so today i am having surgery :)
i’ve been taken off my immunosuppressive for a few weeks pre/post surgery which has me nervous bc i’m VERY autoimmune & its already showing in my pre-op labs 😅
i’m a bit overwhelmed at the 3 month recovery but hopeful it’ll go smoothly🤞
all prayers and good vibes sent this way are super appreciated ❤️
