#got my brain MRI today

[beesinspades]

///

[luciensbabbles]

Oh my god so I'm doing my NDIS application again since the first time it just fucking vanished into the ether and. It turns out my psychiatrist doesn't keep copies of the NDIS application form she fills out. So the only one in existence is my hard copy. And I don't even know if I have all the pages because I put it somewhere safe and I don't fucking remember where that is! I don't even know if I put it somewhere safe and didn't just leave it on my desk or floor after fighting the printer for like an hour to scan it all!!!!!

And the worst part is the NDIS person wanted this *today* and I don't have it!!!! It's friday here!!¡! I'm domed!!!! Can't keep things going until Monday now!!! I'm so upset and stressed !!!!

[lordsardine]

.

[crustyfloor]

What is this horror that I just woke up to

Firstly, Luka's tattoo has finally been revealed (too bad it's not where I theorized it was...) Unlike the others, one detail is stark this time, that being that he was awake during the entire process. He's not even lying down when it would probably be less (by a pinch) painful, and more efficient if he did. He's watching. Even helping by keeping his shirt up.

And it seems he is still maintaining his heart rate even through the pain.

(And, expectedly he is thin so this would've hurt a lot more. I wouldn't be surprised if keeping him awake was to benefit his ability of endurance)

And we have his mugshot too. there are a lot of scribbles on his page so I tried to decipher the two clearest ones to me

LUKA - 010401 (His ID number)

And alongside that, we finally have the full cast tattoo process. (save my Till loving heart what are they doing to him.) HyunA and the girls on the top and Luka and the boys on the bottom.

On the topic that the Aliens in ALNST are horrible and can't be bothered to even put the pet humans to sleep while going through such a painful process, it doesn't look like Ivan is spared either and was also awake. otherwise, I don't know how he maintained that grip.

There's no telling for sure yet but his grip looks loose, perhaps he has a good pain tolerance.

And Till's picture. I think that's a full-body restraint right there (Like a straight jacket) If he was awake the whole time too then that's probably to be expected. There also seem to be wires around his face? a mouth gag? I can tell his is just...gonna be horrible to look at. (I am going to cause a scene. bashes my head against the concrete ARGH)

And we have everyone's mugshots, Sua -> Mizi-> Till -> Ivan -> Luka -> HyunA

(These were especially hard to read 💀 but they all seem to have their own signatures on their own pictures )

Sua (x2) - 1132 (in the circled area) - 020201 (That's close to her ID number- 020211.) - The rest is indescribable except for the "No"(?)

Another interesting part of this, we're shown Till's part of the Season 50 data book. A lot of the text is scribbled out.

Lyrics to unknown Till the end (And something scribbled out on the top) it looks like a draft copy. I can't tell if much changed from the version we have today..just got to see when the full version is out.

I tried to decipher as much as I could, take this with a grain of salt but his profile (left) is more of a teacher's note, one of his flaws being that he's aggressive, and he has a strong suit in performance. (Heavy emphasis on practicing music because his performance is his strong suit)

The C might be his overall grade, his only passing class was music.

(So many star scribbles..Mizi liked stars)

-

The album cover looks like a Brain (it reminds me of an MRI scan kinda) Is it Till's brain after all the experiments he's been through? if so, I'm not surprised it seemingly has a lot of abnormalities.

Also, the prominent signature in the middle looks a little bit Like Ivan's.

And finally the main piece, Given the similarities in data the person going through the test is still Sua.

The bandaging on her head is very confusing though, (is this the process of creating Anakt's child?) She also looks like she's yelling more than singing in this piece. (with the tight restraints it's hard to even tell but she doesn't look as relaxed as the second picture.)

Mental - Good (despite the red light?)

Cry (singing. maybe.) - Good

This could be in the literal sense that Sua was actually crying during this test, or this phase of the test. But Aliens have a warped perception of human sounds. They call crying, singing so...I don't know. If there was a lot of resistance from Sua during the earlier phases then the bandage is probably there as another restraint..so many restraints.

[oneshotnewbie]

soooooo HIIIII !!!! tis i again back from another tumblr hiatus bc college work womp womp!

hear me out,,

amelia shepherd x fem!reader

where they are both surgeons and one of the interns flirts with reader and amelia gets jealous when she sees and walks up behind reader wrapping her arms around reader as she questions the intern on why they thought it be appropriate to flirt with a head of department and amelia establishes that reader is hers, fluff!! ☺️ ☺️ 💗💗

(sorry for the ramble, i’ve had this thought on my brain for a WHILE)

from yours truly,

- ❤️‍🩹 anon !

Authors note: My beloved ❤️‍🩹 anon!! I'm so sorry that I'm only posting this now, but life is really hectic at the moment and I'm totally behind!! I hope you read this anyway if you're still following me <3

ᕚ---ᕘ

Amelia Shepherd hurried through the busy hallways of Grey Sloan Memorial Hospital, her thoughts revolving around the surgery that should start soon and the endless list of patient files she still had to sift through. As one of the hospital's most renowned neurosurgeons, her schedule was always full, but today it seemed particularly overflowing.

In the distance she saw you, her partner and colleague, engaging in a conversation with one of the young interns. A slight smile graced Amelia's lip as she watched you patiently listen to the intern's questions and share your experiences as a renowned surgeon. She not only admired your medical expertise, but also your ability and competence to pass on your knowledge to the next generation.

However, as Amelia got closer, she noticed another intern approaching with a mischievous grin as the gaps in the other intern's knowledge were filled. "Hey, Dr. l/n, I was wondering if you would mind going out for a drink after your shift?" the male intern asked with a hint of confidence in her voice.

You, who accepted the question with a friendly smile, answered politely but slightly dismissively. "Thanks for the invitation, but I'm afraid I already have other commitments tonight."

However, the trainee wasn't easily brushed off and continued, with a hint of persistence as he edged further towards you at the counter where you stood to write a few remaining notes in your newest patient´s file. "Come on, it'll be fun. I could show you some great bars nearby and maybe you could pass on some knowledge to me afterwards."

Amelia felt a slight tension building up inside her as she listened to the dialogue between you and the young medical student. Even though she knew it was unreasonable to be jealous, she couldn't deny that her heart was beating faster and her mind was racing.

You continued to respond politely, but you felt slightly harassed. It was as if the newbie didn't understand that you had no interest in him. "I really appreciate your offer, but I already have plans. And I think I'm out of your league."

The trainee still didn't seem to want to fully accept the rejection, but before he could elaborate further, Amelia intervened and stepped next to you. She noticed your tension and the slight look around for help. "Hey, y/n, I received the results of the latest MRI scans. We should look at them together before we start the surgery."

You nodded gratefully at her with a smile of relief and turned to the young man in front of you. "Excuse me, but I really have to go now. You should get on with your work rather than standing here."

The intern mumbled a vague and quiet agreement before finally turning away as you and Amelia walked towards the operating room. Although the brunette remained calm on the outside, she felt an uncomfortable feeling spreading inside her.

Amelia entered the hospital break room, a place of momentary calm amidst the hectic hustle and bustle of everyday hospital life and the last successful operation. Her eyes searched for you, her partner and colleague, who found her standing at one of the coffee machines with a serious expression on her face. A slight tension ran through her body as she noticed that the same young intern who had flirted with you before was standing near you again and seemed to be talking animatedly to you.

The neurosurgeon approached slowly, her eyes on you and the young medical student as she tried to keep the rising jealousy at bay. But as she got closer, she could not only see the Intern's relaxed posture and teasing look, but also the words he spoke and the rejection you showed him.

"So Dr. l/n, I just wanted to say that I really admired your approach in the last surgery. You have such a calm and competent way of dealing with the most difficult situations. It would be an honor for me to have someone like you to learn."

Amelia felt her heart heavy as she heard the intern's words of praise. A mixture of pride and jealousy permeated her thoughts as she watched you nod and thank him briefly, wanting to end the conversation as quickly as possible.

Jealousy flared up inside her as she watched the Intern continue to hold on to you, and she couldn't help but feel the need to make her presence known. With a determined step she came behind you and her arms wrapped around your middle. Her head rested on your shoulder from behind and a loving look etched on her face, although her darkened pupils gave a hint that she was driven by jealousy before she looked at the young medical student with a cool look.

"I'm sorry for disturbing you," the brunette began in a quiet voice, but there was a distinct edge to her words, "but I'm wondering why you think it's appropriate to flirt with the chief of cardiology while she obviously is in a relationship."

The intern looked surprised to hear Amelia's words and cleared his throat nervously. His hand slid up and down his head as he touched his lips, embarrassed. "Um, I.. I just wanted to express my admiration for Dr. l/n. It wasn't my intention to cross any boundaries."

The neurosurgeon didn't let up and fixed the intern with a penetrating look. "Well, it's important that you know what those boundaries are. Flirting in the workplace can be inappropriate, especially when it crosses the boundaries of professional relationships. This morning was enough, and now you're trying again?"

You felt the tension in the air and in your girlfriend's body. You quickly pulled a hand out of your gown and turned it back to touch Amelia's thigh, calming her. "Thanks for the compliment, but I think it's important to maintain clear boundaries. I'm your boss. I think we should maintain a professional work environment."

The young man nodded sheepishly and quickly retreated, leaving Amelia and you alone in the room, surrounded by an atmosphere of jealousy that radiated from her.

When your eyes met, Amelia felt the simmering passion blazing between you. With a demanding look, Amelia lured you into a nearby chamber and pulled you into a hug. Her lips found yours in a hungry kiss that ignited her longing and desire.

You returned the kiss with equal desire, your hands roaming over the brunette's body as you pulled her closer to you. You felt the fire of your passion burning your skin and you longed for more. With a hand on your throat and a passionate glint in her eyes, she whispered in a seductive voice. "You're mine, y/n. Only mine."

You moaned in need as you felt the dominance in Amelia's voice, and you couldn't help but give yourself completely to her. Your hands found their way to her back as you kissed her passionately, as if you were confirming her words in every moment of touch.

The neurosurgeon felt the heat of her desire as she let herself fall further into the vortex of passion, without fear of loss or getting caught. Her hands greedily explored your body, each touch a promise of pleasure and devotion.

She pushed you against the nearest wall, her breathing hot and heavy as she cuddled close to you, one of her hands slightly squeezing your throat. She whispered with a sensual smile. "You are mine, y/n. All of you and no one else's."

You gasped as you felt the obsession in Amelia's touch, and you couldn't help yourself from completely succumbing to it. Your fingers dug into her skin as you desperately pulled her even closer, as if you never wanted to let her go again.

Your bodies joined together in a passionate dance, the flames of your desire consuming you in an intoxicating rush of pleasure. You were one in your passion, inextricably linked by the bond of your love and obsession for each other.

When you finally sank into a sea, you could feel that you were forever connected through the heat of your love. United in the flames, you didn't even notice the two beepers going off almost in sync, separating you from the heated moment between you.

[horusmenhosetix]

Brain Surgery in October!!!

I finally got my MRI results yesterday and sent them to my surgeon and he came back to me today and said the surgery is planned for OCTOBERR!!!!!! He didn't give a specific date tho so I need him to tell me that before I can start planning the trip! My friend has agreed to come with me, which I never expected but I am very grateful for, so I look forward to seeing them in person again as well!

[k0dster]

OK question, who is everyone personal favorite, well written, mentally ill character?

Bc to this day nobody has topped Lucas Baker for me. I was kind of thinking about this Re7 au I had with an old friend today and started thinking about him again. Capcom has always done such a wonderful job with writing their characters, but something about Lucas makes me think about him every once in awhile.

It's hard to explain in words but the way he was written is just so scary. Not because he's got a bunch of molded henchmen and that creepy barn, but because he's so unpredictable and yet so smart and tactical. The kids a genius and shows it all throughout the game and his DLC, but he's also probably got some form of severe schizophrenia that has clearly gone untreated for near his whole life. He's incredibly smart and resourceful though - as in most cases - is limited by his mental illness.

I almost feel bad for him. He's smart, talented, "gifted" if you must, though clearly limited by who I'm guessing to be Jack. There's a whole little story in game that really stuck out to me, when you're in Lucas's old room looking through his old journal entries he writes about Marguerite taking him for what I assumed was probably an MRI or maybe a CT scan of his head showing she clearly thought something was wrong with him. In an entry pretty close to that one he talks about his friend, Oliver, who keeps messing with him so he locks him in the attic. He talks about how he could hear him banging and screaming for help for about a day before he stopped and was eventually presumed dead to Lucas after he started to be able to smell his corpse. (I actually feel as crazy as him rn I can't find it but ik somewhere there's a document talking about how bad the smell was to him. I almost wanna say he talked about something dripping from the attic too on the same page but idk maybe i made that up)

The whole thing was a clear episode and I almost wanna pressume it happened before the doctors visit. Though that isn't really the point, I think alot of his issues stem from Jack. Not because he's ill too, but because he doesn't take it seriously. I live in the south myself and the stigma around men and their mental health here is so awful I don't even wanna start to imagine what it would do to a kid with schizophrenia who's dad choses to ignore it. I personally think Lucas would have grown up to be alot better of a person, hell, he might not have been in the house he was so well off if Jack had taken the time to acknowledge him. From just the look of the house and the way he acts in the daughter's (?? Sorry i seriously haven't played this game in almost a year) DLC really gives me that 'man of the house' 'men don't have feelings' kinda feel. I can only assume, the only other people in their home being women, that Jack really tried to drill that mentality into Lucas and completely glanced over Marguerites worries about him.

"Untreated schizophrenia can cause severe problems that affect many areas of life. It can disrupt how the brain works, interfering with thoughts, memory, senses, and behaviors. This can lead to difficulties in daily life, such as trouble organizing thoughts and behaving in ways that increase the risk of injury or illness." Which would explain Lucas's entire character during the game- minus the mold.

Ik this isnt my usual posting and an absolute yap fest but I seriously needed to talk about him again. He's so well written it makes me wanna foam at the mouth.

[angryschnauzer]

When i posted a week ago that this year has been utter clownshoes with all the shit that has been thrown at me, i had really hoped that as October drew to a close i could just calmly, quietly freewheel downhill to the end of 2023. But thats not the case, things are just getting worse.

We travelled 200 miles to stay with my elderly MIL for the weekend and to visit FIL who is in an old folks home as he has severe dementia. All going well until Saturday night my husband has a series of seizures. He gets taken to hospital and over the course of 24 hours he has numerous tests including a CT scan which shows a small leison on his brain. He is declared ok to be discharged but with emphasis being put on 'getting home the next day so our usual GP/Doctor can handle any further tests.

That all goes up in smoke when we've been at MIL's place an hour and he has another seizure. He goes back to hospital in an ambulance.

MRI and full body scan today shows he's got a brain tumor. He's going to be operated on within the week, locally here in Wales rather than back in London where we live.

Between now and then i've got to get back to London, get mine and my sons medications as we only brought enough for the originally planned 'long weekend', find legal paperwork for hubs work where it says what the company will pay, and find his Will. Oh and i've got to go on the train as we brought hubs car here (its smaller and would be very difficult to climb in and out of for him post operation) and then drive the 200 miles back in my car which is bigger as i use it for work etc.

My businesses is now effectively shut down for the rest of the year. But that right now i dont care about. I just need my husband to get through this operation.

2023 needs to be over now. I've had enough.

[kickthecan-revolution]

I am so exhausted and emotional today. I had to drag myself to the surgeon's office to learn about the next steps, and I could barely process the information. I ended up in a Lyft talking to my sister, crying. This fatigue is unlike anything I have ever experienced and all of the sudden I got so scared again. I know it's just the second to last treatment, I know it's going to get better but today is today and all I have to do is just get through it. It's hard to picture a future today, there are so many steps - I have to get another biopsy during an MRI for something weird that they can take out during surgery if it is cancer (a non-invasive kind). I got scared it's in the lymph. nodes - I have to meet with a plastic surgeon next week. I know I am just really tired and my brain isn't working well. This is what I was warned about. Still though, it's super hot and there is a helicopter that won't stop flying around and I want to shoot it down. I hate everything.

[lololollywrites]

STEWING in anger today. My younger sister - she's 33 - was diagnosed with multiple sclerosis (MS) 16 months ago, which obviously has been devastating. She is no longer able to work as a nurse, which has been a huge adjustment mentally for her (she LOVED her job in post-labor maternal care). She and her husband had only recently bought a house, but now they can barely pay their bills; he has to work extra hours, and she's home with both of my nieces, one of whom (at 8 years old) has severe behavioral issues stemming from ADHD and OCD. They've already had to file for bankruptcy. She's a wonderful mother, but the stress of it all certainly doesn't help her MS symptoms, and it all piles up (she isn't always physically able to clean the house, etc.). I live about five hours from her and come down when I can to help, but I can't do that as often as I'd like.

She's been hospitalized five times in the past year (unable to walk, with spasms and pain) and received planned infusions even more often, though has thus far only received steroid treatments because HER INSURANCE COMPANY DIDN'T COVER THE INITIAL MEDICATION SUGGESTED BY HER NEUROLOGIST, then REFUSED TO COVER THE SECOND RECOMMENDATION (after the first one was ineffective) despite it being the one they argued should have been chosen in the first place. That's meant she's only had treatment to **manage** her symptoms rather than **treat** them. For over a year. FOR A PROGRESSIVE DISEASE. After more than five years of being misdiagnosed with POTS despite clearly having more going on (and a doctor's office "misplacing" an MRI from years ago that could have showed early signs). Fortunately, she recently got approval from her insurance and will begin treatments next month that will hopefully help.

But this post isn't even about that. This post is about the fact that, as she can no longer work (and briefly tried another desk job at the hospital that was also impossible due to her MS brain fog), she applied for disability. 15 MONTHS AGO. They've made her jump through SO MANY HOOPS - so much paperwork and waiting with no updates that she's been in tears more than once. My mother even contacted her state's Congress representative, who's reached out directly to the disability office to inquire as to why it's all taking so long. Without disability, she and her husband will barely be able to cover their bills, let alone save to repair the many things that need repaired in their new home or to support their children. Or even to just, you know, take a vacation for the first time in ten years to ensure their marriage is salvaged. We started a GoFundMe at the beginning, right after she was diagnosed, which was wonderful, but she doesn't want to do that again now; it feels like begging to her.

Yesterday, her disability request was denied. Who the hell knows why. It was just an instant updated status; we don't yet have the letter. She's devastated, as are all of us. It just seems incomprehensible, though apparently up to 77% of disability applicants are denied in the hope that no one appeals (about 50% do). She now has to get a lawyer and fight for what she deserves. More stress (making her symptoms worse) and more money. And more waiting.

This whole experience has just further radicalized me. I have no idea what to do. I'm just SO ANGRY.

[balkanradfem]

Neck pain update!

Okay so last time I wrote about this, was when I got the MRI results for my neck, which was blank, zero issues found. However the pain in my neck was still so bad I can't walk without pain, can't jump or run at all, and can't carry anything over 2kg. I was too scared to try and fix it on my own, because messing with an injured neck without training is dangerous, and can do damage, so I didn't want to risk making it worse. However, if the scans say the neck is fine, then I can't really ruin it, right, so I've started looking for exercises that don't hurt.

As I was looking for neck-related exercises on youtube (they all hurt too much), youtube was starting to recommend me back exercises as well, some of them specifically for Rhomboid pain. Now, I didn't know what this rhomboid was, but it so happened that I had pain in that exact spot, between shoulder blades, but that pain came and went, so I thought it must be psychosomatic (when you have chronic pain you assume most of what hurts is psychosomatic).

Anyway, I decided to do those exercises because it's much less scary to work on back pain, and they didn't hurt as much. Then I found, in the same source, some neck exercises that seemed a bit dangerous; they instructed me to lay down with my neck hanging over the bed, then hold my own head with my arms, and move it, like I'm fixing it in place. I was shocked to find out that this didn't hurt me, so I did that exercise twice. And then the shocking thing happened.

That exercise immediately changed how the pain felt while I was walking. Before, I used to feel every step as a punch to the back of my neck; now it was to the back of my head. This made me dizzy, nauseous and want to vomit, the first time it happened, and I was very scared that I made it worse. Pressure and pain where my brain is, felt even more serious than neck pain, and I didn't repeat that exercise ever again, in hope the pressure and pain in my head would go away. It didn't, however, go away, but I learned to deal with it, and it became somewhat bearable. I am due in few months for a brain MRI so if there's something actually wrong with my brain, I will find out then. I am suspicious though that maybe there's some muscle in my back that is extending up to the head causing issues. But I don't know if there is such a thing.

I kept doing the exercise for the back pain, but the back pain did not go away from it, the exercise just keeps getting more painful as I keep doing it, unsure whether I should just stop.

After that I fell depressed for a while, and just played stardew valley laying down using my touchpad, and this is where the pain got worse in my left arm. Before that, my arm hurt a little, if I was bending it backwards or extending it too far or carrying anything, but now, it hurt a lot, at all times, whenever I was trying to do anything at all. I thought I made it worse with my irresponsible video gaming, my wrist was now hurting badly too, and I couldn't bend my arm to use the laptop anymore. I tried with my right hand and then my right hand started hurting too.

I was trying various wrist exercises thinking it was the video game problem, that made no difference whatsoever, so today I finally looked up all possible causes of pain in the arm, and found something that was close to the pain I felt - coracobrachialis muscle pain. I've never heard of that muscle, but it's under the arm and connects the back and arm, and can get damaged from overuse. I found instructions on how to locate it, and upon pressing on it, I felt such intense pain I was crying and curled into a ball for a while, it's clear to me that this muscle is in bad condition.

Now, all the pain relief instructions for this were to give this muscle a massage, but I absolutely cannot do that, I can't touch that muscle, I can't press on it, the pain of just the smallest pressure is insane, while I'm happy to have found the source of my arm pain, I am absolutely lost as to what to do with this. Does anyone have any knowledge or experience with this specific muscle? I can't force myself to massage it until I find a way to somehow relax it, or relax the area around it, so that it would be this painful to touch.

Also, the neck itself has shown some tiny improvements. It feels like it got a little stronger, because now I can lift my head while lying down, which I couldn't do before. I can sometimes sit for a bit more than I could do before, I was limited to 20min of sitting before I had to lie down, now I can sit for an hour (with discomfort, but not pain). It still hurts while I walk but now it's more like pressure than being hit with pain, my head instead takes the hit. If I try to run, I get intense pain and pressure in my head, and it extends to my neck as well.

I think I did something okay along the way, maybe few mistakes. There's probably more than one problem with my muscles, I suspect, and I hope I will find ways to resolve them one by one. I even thought for a second that I maybe lack collagen because I'm vegan but then when I looked it up, it's something body produces by itself and doesn't need a supplement. So it's just a big mystery at this point. I still blame that tree-falling accident because this wasn't going on beforehand.

[chronicallyuniconic]

A letter came about my blood results.

As well as the "big diagnosis" of Multiple Sclerosis, I may also have Lupus on top of it. How did they miss this, way back when I had that first & second full blood count. Is this how they missed I was anaemic too? It makes sense why things are, but doesn't make it any better.

On top of the "being disappointed with med professionals" feeling, I'm utterly defeated by this kind of betrayal from my body.

In a completely absurd turn of events a few weeks back, I was upset that I'd invaded my brains privacy by having an MRI. Seeing the pictures of my brain, felt like I'd violated it's existence.

I felt really awful that I didn't ask my brain permission to have a look at it, which is ridiculous when it's my brain giving me these thoughts in the first place.

I know it's an outrageous, nonsensical, preposterous thing to feel, I never thought I'd feel like that about a body part. I never felt bad when I got an x-ray on my hands, wrist, feet, ankle(due to breaks/fractures). I never felt bad for the bones in my body or ask them for permission. So why did I feel this about my brain?

Almost like I have the brain that I think with, and the brain that exists/lives in my skull, that somehow, is it's own being. Why did brain do that. It's fucked w my mental health completely cus it's so incredibly irrational, laughable, silly, unreasonable. It's made me feel stupid, which isn't a word I like to use as a descriptor for a person.

Two brains, and none of them wanna tell me what my body is playing at, or why it hurts today, or why sleep never refreshes me, or why that bit of skin is itching at me, why it feels like bruises all over my head one minute and nothing the next, why my legs and knees go weak, why my hips collapse, why I have to rush to the bathroom EVERY time, why I have seizures, why I'm nauseous again, why my hands go fizzy and turn numb.

Two brains & neither can say.

None of it makes any sense.

[gabbagepatch]

Wasn't a virus ~ 4-3-2024

Okay, so... I got a ~flare~

I didn't know this shit could flare. I figured the nerve pain had stagnated, apparently not. Honestly it's kindof scary, I'm trying to cope with the fear while waiting for the neurologist. I'm having a hard time. I cry almost every night. I'm really tired of dealing with this, I just want to be well. I'm okay-ish. I'm doing things I enjoy, spending time with my loved ones, etc. But at night it still hurts and that's really difficult. I'm very impatient to see the neurologist because I just want them to tell me I'm okay.

Four weeks ago when this started I had about a week of intense nerve pain and vomiting + other unsavory GI issues. Lack of appetite, malaise, brain fog, twitching, etc. It stagnated at a manageable mild-moderate discomfort via twitching and tingling. Then three days ago it ramped up again and last night I had an intense attack that echoed the first flare.

There was certainly some improvement from the first time though. The first time the burning sensation was nearly constant for 2-3 days with multiple bouts of vomiting. Last night after the peak of the flare it was manageable and I was able to get to sleep at the reasonable time. For reference, the first flare I was up until 6am.

I'm feeling worn out and poorly today with some unpleasant sensations in my face but otherwise it's still more manageable than the first flare. Hopefully this means the severity will keep decreasing until it goes away? It sounds weird but I'm a bit hopeful since this time is much easier than the first.

Me and my PCP suspect I have gadolinium deposition disease. The issues began within a week I received an MRI with contrast and my symptoms match it near perfectly. It's not an "official" disease, whatever that means, but if the shoe fits! I'm fighting to get a 24hr urine test so we can know for sure. I think it's kind of ridiculous that it's so difficult to get a test for a substance 15 million Americans receive every year.

My last therapy session is next Tuesday too, so I'll need to start looking for a long-term counselor soon. Another doctor to search for lol. Honestly the appointments make me feel better, like I have a witness and it gives me something to do. A goal. I miss having goals that weren't centered around my health.

I really appreciated my last therapy session, she helped me do mental exercises working through the death of my dog. She also helped me find some coping mechanisms to deal with the fear of having an undiagnosed illness. Her recommendation was to write down my symptoms, especially when they're making me feel isolated.

I'm feeling a lot of guilt about the stress this is putting on my parents. I was crying last night being held by my mom and said, "I'm so sorry, I never wanted to put you through this again."

She replied, "You're not putting me through anything. We're going through this together."

That made me feel a lot better. You can never completely silence the negative thoughts but that certainly lowered the volume. I love my mom.

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"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34

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[ashleywool]

Chippin' around, kick my brains 'round the floor/These are the days it never rains but it pours

Hey y'all. It's been a minute. Here are the main developments in the life and times of your fourth-or-fifth-favorite T-list Broadway person since last I checked in here:

I moved out of my apartment. I'm really gutted about that. I'm lucky I've still got both of my parents' houses to jettison between (currently at my dad's place in Westchester while I finish up some NYC gig commitments, will mostly be at my mom's place going forward), and I know there will be other places, even better places. But that apartment was the first place that was ever truly mine. It was my elder millennial theatre kid manifestation of the American dream. Still, the core grief is not even about the "financial independence" aspect, or even the "why is capitalism" aspect...the core grief is that I had a place of my own to cultivate community within. I got to have friends over for tea or iced coffee or brunch, I got to cook Christmas dinner for me and my dad, I got to foster my friends' kitty and hang out with my kitties. And I miss that.

I recontracted with the Medicare brokerage I worked for previously. I'm actually excited to get started with them again, especially with the busy season right around the corner, and I was actually planning on returning to them anyway even if Ohio had continued (and my health held up), but the old "don't quit your day job" stigma is still weighing on me today--especially since I'm in "new hire" training right now and having to patiently wait to do all the things I already know how to do and wait for all the actual newbies to catch up. I'm sure I'll feel better about it once I'm back in the swing of things, though.

I am working on a solo show. It was supposed to happen last weekend, but it didn't. It's now most likely happening in January.

Pending additional lab work (as usual), it looks like the root of my endocrine issues can continually be addressed with medication adjustments and won't require surgery. I just need to get yearly-or-so MRIs to check on Otis. Hope it stays that way.

[acertainmoshke]

Episodic Ataxia Part 1: Background Info

Happy disability pride! I have been encouraged to ramble, and I'm going to, starting with some background.

So, I am 90% sure that what I have struggled with my whole life—and what my father and grandmother also have dealt with their whole lives—is called episodic ataxia. I use dizzy and wobbly pretty interchangeably today because I grew up saying I got dizzy, but in actuality what it is is more a loss of balance and coordination, making me feel like a toddler struggling to walk in a straight line, than what most people mean by dizziness (which, as far as I can tell, means either vertigo or the feeling of spinning around). So basically, I have these spells that can range from half an hour to several hours and mildly annoying to unable to stand up. Also, fun fact, it comes with brain fog! Bonus fun fact: I did not even realize that this narrowing of focus and inability to process was brain fog until like last year. It also affects all my muscles, which include my tongue, which means that speaking gets hard too, just when formulating thoughts into words is also a struggle.

I have been to the doctor...4 times for this total, 3 of them as a legal adult. My parents first noticed my balance issues when I was about 4 and I had to stop and sit down in the middle of tag. The first time I am aware of being taken to a professional about it, I was 7. I have no memory of this, but I know the doctor could think of no explanation besides Meniere's, which is an inner ear issue characterized by vertigo and hearing loss. Presumably this came up because my grandmother has a diagnosis as a sort of they-couldn't-find-anything-else answer. I didn't get an official diagnosis though because he thought I might be too young for it. Which is probably good, because I was actually too young to understand or explain that what I was experiencing wasn't really vertigo.

The next time, my mom took me to a dizziness specialist in a city 4 hours away when I was 18. I'm not actually sure why we chose then, but I know I agreed to it. Mostly I remember filling in the paperwork question about what triggered it, in my tiny cramped writing, so thoroughly that I was squeezing situations into the margins. I also got an MRI that gave me a panic attack. The doctor had no obvious answers and I didn't get to go back because I went to Europe a few months later and my family moved states when I got back.

The last 2 were on my own, after I moved out and got married. I went to an ENT to thoroughly rule out Meniere's, which they did almost purely by establishing I had no hearing loss, but I didn't argue because I already didn't think it fit. I got referred to the most useless neurologist, who pretty much had me take off my shoes and walk across the room, didn't seem to hear my explanations, and then gave me pamphlets on the two most common neurological balance issues, neither of which remotely fit me. But in doing research to be extra certain of that, I ran across episodic ataxia, and for the first time in my life a description actually seemed to fit my experience. There is a genetic test for it, but I am managing alright now and mostly wanted answers, so didn't bother trying to get diagnosed.

Now, how it affects me day to day varies so widely that I decided to make posts about each level. Because this is my blog and I do what I want. Happy disability pride!

[unfilteredrealities]

"small" life update 18.04.2024

I ended up with a lumbago with sciatica. It sucks. My right leg is semi numb and walking is agony bcs it keeps yeeting to the side and I keep almost falling and losing balance and I barely feel my leg. Sleep is shitty bcs I can only lay on my left side with an orthopaedic pillow between my legs.

I have to take painkillers. I keep almost falling because my right leg is giving out due to being semi numb. Sitting is a struggle. Walking is a struggle.

I went to the doctor today though finally after some convincing bcs idk my brain was like I’m not sick I just can’t walk properly that’s pff fine 🤡 (it was in fact not fine)

Turns out I have indeed lumbago with sciatica. Oh and I got a referral for the neurologist for the leg numbing and for the pots I think but idk if the neurologist can diagnose that 🤔

Update 22.04.2024 :

The neurologist was super nice and empathetic and didn’t even blame my weight or anything for my issues. She took 40min in the appointment asking me questions and testing stuff out with my feet by me laying down on my back and me having to push with me feet towards her and me telling her where I felt pain and if I felt pain.

So I have to do an MRI, an X-Ray of my Hip, some test thingy where they test if my nerves in my right leg are still ok, a gazillion of blood tests. Oh and I got prescribed Gabaran 300mg aka Gabapentin I think. Which rn I am too scared to take bcs she said it can make one drowsy in the evening but drowsy when waking up too to the point I could not go to work due to it maybe.

Oh and I have to get a crutch :)) didn’t expect to be 26 1/2 yo needing a crutch for stability to not fall over bcs my right leg is like whomp whomp muscle and stability and push energy 😭

This wasn’t it universe. I didn’t ask to get even more disabled than I am already 😩🥲

Having a paresis with my right leg sucks :((