#MALS
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hey guys! this isn’t kny related, but I need advice, and I have a wider audience on this blog compared to my main.
I have a doctor’s appointment tomorrow, for a specialist I’ve been waiting six months to see regarding my chronic illness. I’m really worried about it- to even get this appointment, we had to threaten to claim medical negligence because nobody would take me seriously enough to look at my case file. I’ve had doctors cancel appointments on me week-of because they didn’t mean to make them. I need this appointment to go well. I need to start taking steps towards the surgery to fix MALS, but i need doctors to take me seriously enough not to dismiss it as menstruation or a normal food intolerance. Im afraid they’ll look me over, then send me home with an ibuprofen and a $700 bill. Its happened before.
I’m bringing my cis male friend to pretend to be a relative of mine, and he’s going to tell the doctors he’s been very worried about me and made me come in. Does anyone have any other advice on how to get doctors to listen to you? Any advice is appreciated- i need this appointment to go well.
I know I may be overthinking this, but I’ve had bad experiences in the past, and I can’t spend another year begging professionals who are supposed to help me to even consider my pain. I just want to be prepared to self-advocate.
#leon says words#not kny#medical negligence#chronic illness#invisible illness#invisible disability#chronically ill#MALS#medical advice#tw medical
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I had 3 doctors appointments in the last week AND a call/long conversation with my case manager/care plan manager, and she’s doing her damnest to get me back into palliative care. (For those who don’t know, palliative care is basically hospice for those who aren’t expected to die in the next 6 months.)
Looks like the specialists are finally starting to agree with me… I’m done with trying to find a cure, I’m exhausted from years of surgeries trying to fix the root problem/cause.
I just want to treat the symptoms and try to improve my quality of life as much as I can and focus on comfort and reliving suffering, rather than fighting so hard to fix everything and be cured. I just want to stop suffering so much.
This partially feels like “giving up,” and makes me sad… but the other part of me feels so much relief in finally giving up the fight. I just want to live the rest of my existence in as little pain as possible, and try to prevent more health crises-es and emergencies.
It’s been a lot of years of this… I’m ready to focus on being comfortable and getting my life back a bit. I’m finally coming to terms with that hard conversation a doctor had with me 8ish months ago about “accepting that I will always be disabled” and “coming to terms with a new normal.” At the time, I was so mad at him suggesting that… but now I’m realizing it may be more peaceful for me to go that route. I’m tired of constantly fighting it and spending so much time researching experimental surgeries and treatments to find a miracle cure. I just wanna focus on living.
#chronic disease#chronic illness#disabled#disability#disabilties#invisible illness#spoon theory#spoonie#rare disease#rare disability#rare disorder#rare diseases#actually autistic#actually disabled#disabled and proud#ambulatory wheelchair user#wheelchair user#chronic pain#chronically ill#chronic fatigue#pain management#pain medication#pain medicine#mals#neurogenic MALS#neurogenic median articulate ligament syndrome#median articulate ligament syndrome#SMAS#small mesenteric artery syndrome#Bonnie blogs
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She's slaying yall:D
#legend of zelda#pfp#found it on pintrest#malon#mals#the legend of zelda#loz pfp#i was gonna use this but i wanns keep my pfp the same on all platforms idk
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vimeo
(Vascular Compression Syndrome Introduction on Vimeo)
An *outstanding* explainer video about vascular compression syndromes incl. MALS, SMAS, May Thurner, Thoracic Outlet Syndrome and more.
#vimeo#compression syndrome#vascular health#chronic illness#May Thurner Syndrome#MALS#SMAS#Thoracic Outlet Syndrome
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No yeah, just go ahead and starve that organ, I probably didn't need it anyway. :/ [disappointed emoticon] Thanks
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*me noticing I have a high heart rate not knowing why
Me: why this time body? I’m sitting down? 🤨
Body: You dared to have dinner
Me: Oh for f***s sake…
#life of being chronically ill#POTS#postural orthostatic tachycardia syndrome#SMAS#superior mesenteric artery syndrome#Wilkies syndrome#chronically ill#chronic illness#me/cfs#eds#ehlers danlos syndrome#median arcuate ligament syndrome#MALS
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[malnutrition, food, medical diet, weight discussion]
My entire body hurts so bad today and I am so exhausted despite having like 10 hours of sleep. My body and nervous system are so overwhelmed from malnutrition on top of my usual complex chronic illness stuff and it is seriously difficult to come out of it. The intense fight or flight response that I’ve been in for months feels never ending and nothing has really been able to calm me down. I was always aware of physical effects of malnutrition, but my level or anxiety is higher than I’ve ever experienced and my dissociation threshold feels nonexistent. And the worst part is knowing that food will help, but if I overdo it I’ll end up in the hospital again with significantly worse symptoms.
I’ve unintentionally lost so much weight over the past few months because I haven’t been able to eat normally and I don’t tolerate my Soylent meal replacement shakes anymore. It’s quite scary watching my body change like it is and that definitely confounds my anxiety. I’m really glad my pcp was able to get me a prescription for a meal replacement shake because I really don’t want a feeding tube and am doing everything that I can to avoid one. I just really miss food and making meals, which is making my medical diet more difficult. (It helps knowing I absolutely can not tolerate the pizza I really want, but it’s just hard restricting myself so much).
And it’s so fucking difficult to actually hydrate myself and stay hydrated even *with* IV hydration. I am really so miserable and in so much pain and so nauseous.
#cw food#cw weight#cw medical diet#cw malnutrition#Olive’s medical updates#olive blogs#disability#I really just want to eat food so badly#but my gastroparesis keeps telling me no#malnutrition recovery is honestly so difficult and so slow#but I know it can’t be faster#ugh#abdominal vascular compression syndromes#SMAS#MALS#nutcracker syndrome#gastroparesis#endometriosis#and I’ve also been very heavily dissociated for months my#osddid#signed: kim & olive & ann
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Döner Kebab met zwarte looksaus maken op de BBQ
View On WordPress
#Barbecue#barbecueën#bbq blog#BBQ saus#Döner#gegrild#gemakkelijk#grillen#houtskool#kebab#koken#kruiden#kruidenmengsel#kruidig#lekker eten#mals#recept#smaakvol#street food#traditioneel#Turkse keuken#varken#varkensvlees#vlees#vleesgerechten#zonder spit
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I’m in the hospital unexpectedly for a few days and FEROCIOUSLY consuming Stolitz content to survive/heal myself ♥️🥰
Pls send your fave stolitz fanfics, one shots, fanart, COMICS, especially 🥹👉🏻👈🏻
#Bonnie blogs#stolitz#mals#neurogenic mals#median articulate ligament syndrome#SMAS#hb#blitz helluva boss#helluva boss#blitz/stolas#blitzo#helluva boss blitz#disability#disabled
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I have a condition called Median Arcuate Ligament Syndrome (MALS). In my case it was, ironically, caused by a corrective scoliosis surgery. Usually it's associated with connective tissue disorders, from my understanding, but that's not my experience. It's where a major artery to the digestive system gets pinched and causes all sorts of digestive issues and pain. The doctor that diagnosed me hadn't even heard of it until we suggested its sister condition on a different artery.
I also have AIWS which I've seen a couple of people mention in the reblogs already. I hadn't considered that a condition until I saw other people mentioning it.
it makes me sad that the same few conditions consume disability discussions. the disability community is so diverse and I know there are other people out there who have diverse experiences. I think the community needs to do a better job of lifting up the voices of people with rare conditions (or even just conditions that aren't spoken about) I want to hear from people who have different experiences from mine. people with rare diseases often have very unique experiences and it's really shameful that we don't get to hear those voices very often.
anyways, if you have a rare disease (hEDS is not rare) or a condition that isn't talked about often feel free to promote your blog or share something on this post.
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#einfach mal jetzt schon legendär#liebe alles an dem video#german stuff#Brot Zeugs#sie müssen das schon sagen 👀#wie heißt das 👀👁️👄👁️#du weißt was du tun musst 🐽🐽
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𝐒𝐦𝐢𝐥𝐞 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐂𝐚𝐦𝐞𝐫𝐚! 📸✨
Grace finally has a Magicam account, and what better use for it than immortalizing their friendships?
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 yuur_grace
❤️ 630 🗨️ 43 🔄 22
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 I finally made an account!! First pic, tea party preparations with housewarden of Heartslabyul! 🌹🫖
❤️ 𝗮𝗰𝗲_𝗼𝗳𝗵𝗲𝗮𝗿𝘁𝘀 LMAO? HE'S SUCH A PRUDE LOLL
¬♠️ 𝘀𝗽𝗮𝗱𝗲_𝗱𝗲𝘂𝗰𝗲 @ace_ofhearts dude you're aware that housewarden Rosehearts owns a magicam account right?
♦️ 𝗱𝗶𝗮𝗺𝗼𝗻𝗱_𝗺𝗶𝗻𝗱 totes adorbs!! but kinda bummed u didn't pick me for such a cute pic idea... (ㅠ‸ㅠ)
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @diamond_mind Oh I'm so sorry!! I got so busy with preparations that it slipped my mind u_u; I'll save you a spot next time, promise!
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 yuur_grace
❤️ 450.2k 🗨️ 130.1k 🔄 130k
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 ....okay so this MIGHT turn into a series. I pray to the Seven that Leona isn't active on magicam or else I'm migrating (he looks so peaceful tho, doesn't he?!)
🐺 𝗷𝗮𝗰𝗸𝗵𝗼𝘄𝗹__ Grace.
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @jackhowl__ Jack...... 5 replies
🐆 𝗿𝘂𝗴𝗴_𝗯𝘂𝗰𝗰𝗵𝗶𝟯𝟵𝟳 you owe me a deluxe cutlet sandwich now btw 😇
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 I don't recall that being on our TOA?? 1 replies
🐰 𝘀𝗮𝘃𝗮𝗻𝗮_𝗻𝗽𝗰 ????? LEONA KINGSCHOLAR???? ISN'T THAT THE PREFECT WHAT. 1435 replies
🦁 𝗺𝗮𝗴𝗶𝗰𝗮𝗺_𝘂𝘀𝗲𝗿𝟮𝟱𝟲𝟯𝟴𝟮𝟵𝟮𝟱𝟮 Sevens you narrow minded idiot.
¬ 🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 is that literally fucking leona kingscholar 34572 replies
➻oh, except.... maybe they forgot one little detail...
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 yuur_grace
❤️ 23.2k 🗨️ 2.3k 🔄 442
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 Decided to pay our octobuddy a little visit at the @mostrolounge this afternoon 🐙🍹What a face! (also, wow where did all of you come from?? Was Leona's sleeping visage that baffling of a prospect? ùᴗu,, actually, I'm now realizing that I hadn't even set this account to private...oops.)
🐬 𝘁𝗵𝗮𝘁𝘀.𝗮.𝗺𝗼𝗿𝗮𝘆 ahahah!! oh man look at his face! little shrimpy's got guts~
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 thanks for being the cameraman buddy ùᴗu ͙͘͡★ 7 replies
❤️ 𝗮𝗰𝗲_𝗼𝗳𝗵𝗲𝗮𝗿𝘁𝘀 I'm surprised you didn't get ptsd just from walking into that room LMAO
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @ace_ofhearts hm okay how about you join me next time
¬❤️ 𝗮𝗰𝗲_𝗼𝗳𝗵𝗲𝗮𝗿𝘁𝘀 @yuur_grace no thank you <3
🐬 𝗷𝗮𝗱𝗲.𝗹𝗲𝗲𝗰𝗵. hahah. how swift. perhaps i may join you one day to capture such riveting images. 3 replies
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 ok no I'm actually so invested we can't just move on from the fact that this guy showed up all of a sudden and just KNOWS Leona kingscholar personally?!?? 200 replies
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲
❤️ 530.5k 🗨️ 221k 🔄 138k
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 Another face cradled! And a dear friend hugged! Had a blast at this wonderful get-together in Scarabia dorm ☀️🏮🎇 I think I'm ready to sleep for a week though hahaha ^^;
☀️ 𝗸𝗮𝗹𝗶𝗺𝗮𝗹𝗮𝘀𝗶𝗺✪ I'm so glad you came! I don't think I've had that much fun with friends in a while! You're always welcome whenever you feel like visiting 😊✨
¬ 🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @kalimalasim always!
¬ 🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 ARE YOU FREAKING KIDDING ME 1240 replies
🐍 𝗷𝗮𝗺𝗶𝗹_𝘃 There's still some leftovers if you'd like to take some for Grim. Or yourself, really. 2 replies
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 oh okay so there's even MORE. why not. SURE. 212 replies
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲
❤️ 970.6k 🗨️ 596.3k 🔄 502k
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 Nothing better than a long evening spent with the beauty queen himself @vilshoenheit. And look, he reciprocated! How sweet~ 💜✨ A wonderful idol, an even better friend.
👑 𝘃𝗶𝗹𝘀𝗰𝗵𝗼𝗲𝗻𝗵𝗲𝗶𝘁✪ How precious. Do take good care of that manicure.
¬👑 𝘃𝗶𝗹𝘀𝗰𝗵𝗼𝗲𝗻𝗵𝗲𝗶𝘁 Wait, Grace, is this a private post?
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 will do! 🤍 2304 replies
🍎 𝗮𝗽𝗽𝗹𝗲𝗽𝗲𝗹_𝗳𝗲𝗹𝗺𝗶𝗲𝗿 man you're better than me, i can't stand a second doin any a this balderdash
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 your loss,, it's sooo relaxing 🙂↕️
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 YOU GUYS I CANT COPE ARE YOU KIDDING MEEEEEEE 784 replies
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 is this guy some sorta undercover cop or sum?? how's he got all these crazy ass ties??
🏹 𝘁𝗵𝗲𝗵𝘂𝗻𝘁𝗿𝗼𝗼𝗸 oh, là là... quelle beauté, the calm before the storm~
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲
❤️ 60.3k 🗨️ 43.4k 🔄 22.5k
𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 Seems like I've been graced with this nice little picture from @0r1h0_shr0ud2 during a visit to Idia's dorm! No face hold unfortunately, but it's quite cute!🩵🤍 Very rare, it seems Idia has yet to realize the photo being taken ^o^. Peep the adorable little PreMo gacha figure I got for him...? 👀
🩵 𝟬𝗿𝟭𝗵𝟬_𝘀𝗵𝗿𝟬𝘂𝗱𝟮 I was so happy that you decided to stay and keep my brother company, Grace Alexander-san. Idia doesn't show it, but you really made his day!
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @0r1h0_shr0ud2 awww! I'm always happy to spend time with you both! 🤍 3 replies
💙 𝗴𝗹𝟬𝟬𝗺𝘂𝗿𝗮𝗶 woah when was this?! you can't just spring such a rare event out of nowhere! delete, delete!!! 5 replies
♦️ 𝗱𝗶𝗮𝗺𝗼𝗻𝗱_𝗺𝗶𝗻𝗱 oh my Seven!! you both look so dope! truly inspiring— and can we talk about how *adorbs* you look with that biscuit hanging from ur mouth?? (˵ •̀ ᴗ - ˵ ) ✧
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @diamond_mind brothaaaa keep this up and you'll be fighting off rumors for days LOL ùᴗu ahuahu
¬❤️ 𝗮𝗰𝗲_𝗼𝗳𝗵𝗲𝗮𝗿𝘁𝘀 @yuur_grace OH U WANNA HEAR ABOUT RUMORS??? HAHAH
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 Am I tweaking or is that like. *The* Idia Shroud from the family Shroud part of the largest technological pioneers in Twisted Wonderland. Or am I insane.
¬🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 this HAS to be a social experiment atp?? What in the world is this guy's power??? 467 replies
.𓂃˖˳·˖ ִֶָ ⋆★⋆ ִֶָ˖·˳˖𓂃 ִֶָ.
🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲
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𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 it felt almost special, leaving my vest off. Maybe it was the winter breeze. Tsunotaro helped me with his cape, though, despite my insistence. What a sweet personality! 💚🐉 We took a long walk through an abandoned woods, found some gorgeous gargoyles. To end my little series, I asked to hold him as well. He doesn't own a magicam account so I can't tag him... But at least he can keep the pictures :) Hurray! It ends! 🤍✨
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 THERE IS NOOOOO FUCKING WAY I REFUSE NO NO ABSOLUTELY NO WAY THIS IS AN EVIL PRANK WHAT WHAT WHATTTTATSYSYTHJDHJ WHO IS THIS GUYYYYYY 1204 replies
🌐 𝘁𝘄𝘀𝘁𝗻𝗽𝗰 OH YES DROP THE BOMB ON US WHY NOT. OKAY. THREE OTHER CELEBS WEREN'T ENOUGH I GUESS. 762 replies
🦇 𝘃𝗮𝗻𝗿𝗼𝘂𝗴𝗲𝗲 Grace, you must know I have never been so entertained in my long life. Why, Malleus himself sits beside me and stares down at the screen in bafflement!
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 @vanrougee ???? Explain?? ToT
¬♦️ 𝗱𝗶𝗮𝗺𝗼𝗻𝗱_𝗺𝗶𝗻𝗱 @yuur_grace you sweet summer child 😭✋
¬ 🐊 𝗹𝗶𝘃𝗶𝗻𝗴.𝘇𝗶𝗴𝗯𝗼𝗹𝘁 @yuur_grace YOU ARE ENTIRELY UNCONNIVING. YOU PLACE MALLEUS UNDER INTENSE SCRUTINY FROM THE MASSES AS WELL AS LADY MALEFICIA! YOU SHOULD BE MORE MINDFUL, HUMAN!!
¬🦐 𝘆𝘂𝘂𝗿_𝗴𝗿𝗮𝗰𝗲 OH my god.
HEHEHE I HOPE YOU LIKED THIS AS MUCH AS I DID THIS WAS SO EXHAUSTING BUT SO FUN TO MAKE !!! 🩷🤍🩷✨✨ Also pls don't look too hard at the numbers ik a lot of them are wrong I'm sleep deprived and high on 3 monster cans 🤍
#twst#twisted wonderland#mal draws#ace trappola#deuce spade#cater diamond#riddle rosehearts#leona kingscolar#ruggie bucchi#jack howl#azul ashengrotto#jade leech#floyd leech#kalim al asim#jamil viper#vil shoenheit#epel felmier#rook hunt#idia shroud#ortho shroud#malleus draconia#lilia vanrouge#sebek zigvolt#twst x reader#twst x yuu#twst x oc#twisted wonderland x reader#twst yuu#twst kalim#twst yume
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a wikipedia poem on software entropy
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Aha. Ow. How dare I eat food my bad.
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Life is not worth a single line of Baudelaire.
—Akutagawa Ryūnosuke, “Life of a Stupid Man”
Mals, Italy (August 2024)
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