#the appointments were too much to keep up with as my physical illnesses worsened and then my dx expired and i just never got re dx'ed | Explore Tumblr Posts and Blogs

newhologram · 3 years

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I know only a few of you are on IG so I wanted to give an update here on the past few days. I am doing this knowing the potential risk but I need to also record where I'm at right now in case anything weird happens.

My week has been like this so far. Sunday: Family Member 1 misplaced their Xbox controller. They kept asking me if I knew where it was, each time growing more and more aggressive. I don't have an Xbox, I reminded them. I have my own controller for my PC. But they kept knocking loudly on my door. They followed me outside where I was vaping and tried to accuse me of I don't even know what. Pawning off their controller? FM1 said, "Is there something going on that you're not telling me? SOMEONE'S messing with me!" Later that night they and their gf were making dinner. FM1 suddenly knocked harshly on my door and said aggressively, "WHAT DID YOU DO WITH THE OVEN MITTS" in an angry voice. I was already stressed from them harassing me earlier about the controller. I came out of my room, heart racing, and told them I had not used them that day. I helped find the mitts, which had fallen behind the trash can because the hanging hook had broken. I went to bed on edge, feeling unsafe and targeted, wondering why my family member was suddenly acting so paranoid and accusing me of misplacing their things... Something they actually have done to me my whole life, denying it until the moment my item is found, when they suddenly remember they did move it there (or accidentally throw it out/destroy it). The controller ended up being some random place in the living room. Monday: I went to leave for my acupuncture appointment. My booster seat/pillow thing was missing from my car. Not in the trunk or anything. I cannot drive without it. I'm too short to see over the steering wheel. I called FM1 and they have no idea where it could be, despite the fact that they drive my car every day. FM1's gf helped find it, in the garage. But I still had an epic fucking meltdown, sobbing the whole way to and from my appointment. I just cannot handle people moving my shit and disrupting my schedule like that. And it just hurt so much more knowing that FM1 was so awful to me the day before about their stuff being misplaced. I'm always having my personal belongings, my feelings, my personhood, disrespected. It hurts deeply. When I got home I stressed to them that this is my car, and my accommodation should not ever be removed from it under any circumstances. It was after this that I decided it was time to hold a family meeting. I called Family Member 2 and 3 over to the house. I read a long letter to them in which I told them about the talks I have had with my therapist, psychiatrist, and another psychologist. Even though I cannot be formally assessed and diagnosed at this time, I am being treated for autism. I detailed to my family my entire life of trauma that is traced back directly to my autistic traits, and my needs not only not being met, but being outright denied. I was denied empathy most of my life for my sensory issues, my pain, everything. A big part of this is gaslighting. Even if it's unintentional or not malicious, gaslighting is incredibly traumatic. Especially when it comes to my sensory issues. I have had even more problems with overstimulation the past year which means I can barely sleep, so my daily naps are even more important. I try to coordinate my naps when there is less activity in my house. But if I'm in a ton of pain and extra sensitive and ask for quiet, that's when I get in trouble and a fight happens. That's when FM1 tells me I "need to be realistic" and "can't expect the whole world to shut up for you"... when I'm literally saying "I have a migraine and need to rest, can you please not play loud music or slam cupboards in the kitchen for a few hours?"

I was emotionally neglected and abused by both parents. A lot of it is just the result of their own trauma that they have not dealt with... But I have also been physically threatened and assaulted by them at different times, though it only happened those specific times. (They won't ever admit to it though.) The emotional and mental abuse still goes on in my home. I am not allowed to have emotions. I have been told "STOP. WHY ARE YOU CRYING. LIFE'S NOT FAIR. WHEN YOU GET OUT IN THE REAL WORLD YOU'LL HAVE SOMETHING TO CRY ABOUT" over and over--like... in response to me crying about my pet dying, or in response to me crying bc I'm in horrible pain from my chronic illnesses, or crying after my usual yearly ER visit. I am also not allowed to have boundaries. I have tried to communicate with FM1 that these things hurt me deeply. And their response is basically, "YOU'RE SO UNGRATEFUL. I PUT A ROOF OVER YOUR HEAD!" and threats such as "BETWEEN TAKING CARE OF YOU AND GRANMDA, ONE OF THESE DAYS I'M GOING TO DRIVE OFF AND YOU'LL NEVER SEE ME AGAIN!" or "I'M THE ONE WHO SHOULD KILL MYSELF BECAUSE I HAVE TO TAKE CARE OF YOU"-- y'know, in response to having a disabled child. Ouch. The message is clear: I am nothing but an inconvenience and a burden to my family. I still have nightmares about them abandoning me, or abusing me more. I think in their heads they think that they love me. But this isn't love. If I try to talk to them about how dangerous it is for them to say things like that to me, they say "I never said/did that." Which brings us back to the gaslighting: I said that every time they gaslight me and tell me that my emotions/thoughts/experiences aren't real, it triggers me so badly that I self-harm and become suicidal.

I was very clear with them: I said that I can no longer have that in my life because one day it will kill me. I don't wanna die that way. I want to live. I have very bad PTSD and it's something I have worked on for 8 years but it has been worse the past year with so many disruptions and FM1's worsening narcissistic traits. I gave the choice to them. I said if they gaslighted me again that they were making the decision to not be in my life. Because this is about preserving my life. I'm trying not to die here. I'm literally trying to save my own life, even if that means not having a relationship with my family. They accept that I am autistic... But they then took turns gaslighting me. When I pointed out, "that's gaslighting. that's exactly what I just said in my letter. What you're doing is gaslighting" they went even harder on it. They said my experience and my trauma is "not in line with reality". They also said I "need to be reasonable" with the boundary that I'm setting (meaning: they don't believe in boundaries at all). They tried to guilt trip me with, "you can't cut someone out of your life because what if they DIE and then you FEEL GUILTY??" (I mean, what if I killed myself because you keep hurting me? Wouldn't you feel guilty about that?) They also guilt tripped me with "well we TRY to invite you to family stuff, and we try to include you, but you never want to go..." um... I guess they forgot I am chronically ill? Sorry if I don't have the energy or pain tolerance to drive an hour each way to a loud family party after I've worked all week? I cried and cried, I said this is exactly what I told you that you do to me and how it endangers my life... and you're doing it... while telling me you don't do it to me... They were all weird and told me "we love you and would do anything for you!" except... I guess, not gaslight me constantly? Idk. I felt so trapped. I felt so hopeless. I was up all night crying. I wondered, "Why is the idea of me having distance from them somehow worse than me being dead? Why would they prefer that I die rather than set a boundary that will save me?" And then I remembered: I had set the terms. They broke them. You do this, you're out of my life, because me being alive is more important than us having a relationship which will eventually kill me. I'm not trapped. It doesn't matter if they think they can prevent me from setting this boundary because they can't. I'm in charge of my boundary. So I blocked them on social media, as well as their phones. I have to unfortunately keep FM1 unblocked bc I live with them, they drive my car, and they look after my cats while I am at work. If I didn't have so many great things happening behind the scenes, if I didn't have my cats, if I didn't have amazing friends and followers who are supportive and kind... I can definitely see that I would have ended my life that night in some alternate timeline. That is how much pain I was in from them doing that to me. Them literally trying to gaslight me into not setting a boundary. I mean it would've been so ridiculous on their part, can you imagine? Me: Hey family, when you gaslight me, it makes me suicidal. I don't want to die, so either you stop doing that, or we can't have a relationship. Family: UHH NO *gaslights me anyway* Me: ok *kills self* Family: *surprised Pikachu face* Like???? Would they really have been shocked because it seems like they should have known since I told them directly? And that just shows that they really don't take my pain seriously at all. They think I'm overly sensitive and that my trauma is not real. That would have been a painful wake up call for them. I told my therapist all of this. And she agrees that this is good, this is going to not only ween them off of me but also allow me to focus on all the good stuff I have going on. I have to get moving. So much stuff has been lagging because I'm constantly recovering from them triggering me. I'm going to focus, and heal, and gtfo of here. Thank you for your support and for never invalidating my pain.

#teku #personal #d o nut #reba gel #!#donut rebagel plz

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punksarahreese · 4 years

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31. — lies 👀👀

Hehe

Hanahaki!AU; Sarah’s lies can only keep people convinced for so long

CW: coughing fits, emetophobia warning (vaguely mentioned), Sarah is being a clown again :/

Happens before Blue but after Beginning

***

“Doctor Reese,” Daniel Charles was way too peppy for seven in the morning on a Monday but Sarah was too nice to say that, “How are you this fine morning?”

“Good morning, Doctor Charles,” she said with a weak smile, “I’m alright, you?”

“Oh, I’m just fine. You know, Robin was telling me-”

Sarah tried her best to listen to her attending’s story, something about a new flu strain going around in neighbouring cities and how Robin was very interested in tracking its migration. She nodded at all the right parts and made affirming sounds when she thought necessary, a bit too zoned out to really answer properly. It’s not that she didn’t want to listen to doctor Charles, she was just majorly distracted.

“-So, if you see a patient with any symptoms similar to that, let me know so I can tell her.”

“Will do,” Sarah nodded, smiling as if she had even heard half of what he had said. He left soon after that, off to check on patients he had already been assigned most likely. April greeted her friend cheerfully as she walked past, pushing a patient’s wheelchair so she clearly didn’t have time to chat. Which was fine with Sarah, truthfully she didn’t know how much small talk she could survive that day.

She made her way through the first thirty minutes of work with little problem, mostly charting things from the day before and trying to ignore the nagging feeling that something was wrong. She winced every time a cough shook her body, hoping no one would think anything of it for the sake of her sanity.

“Reese,” Connor’s voice startled her a little as he came up behind her, “You look tired.”

“Hi, Connor,” she breathed, “Didn’t sleep well, nothing a little coffee can’t fix.”

Sarah obviously wasn’t going to tell him that she didn't sleep at all the night before. Instead she spent it on the bathroom floor, alternating between throwing up, coughing, and writhing through excruciating chest pain. Certainly not something coffee would fix but no one needed to know that, she had insisted to herself. She didn’t need to worry anyone and she certainly didn’t want anyone to know who was causing this. She would make a specialist appointment eventually; once she figured out what she wanted to do with her flowers. Until then, a few sleepless nights spent in pain would just have to be her secret.

“Have you seen Ava?”

The way she internally flinched at even the surgeon’s name had become a problem, but it had begun to hurt her physically at every mention of Ava, “D-doctor Bekker? No.”

Connor was explaining that she had come down for a consult but he needed her back in post-op to discuss rehabilitation with a patient’s family. Sarah nodded, reiterating that she hadn’t seen the other doctor. Just as she did though, she heard an all too familiar accent speaking from a couple doors away.

“Monique, I need labs and an EKG for treatment two. CBC, Cardiac enzymes including tropin, thyroid, and BNP.”

Once she had gotten a positive response from the nurse, Ava asked to be paged when the lab results were back. She turned as if she was going to head back upstairs, and Sarah found herself hoping that she would. No such luck, though, because Connor called after the other woman before she could get very far.

“Oh, you’re down here?” Ava had turned at his voice and walked over, “What’s up?”

Connor was about to reply but Sarah interrupted him before he could properly answer. Her whole body shook with an aggressive cough, one that sounded all too painful. Both CT surgeons were immediately concerned, the reason Connor had been looking for Ava no longer as pressing of a matter.

“Sarah, you alright?”

Sarah nodded weakly, forcefully swallowing the bile that had risen to her throat. There was no way she could throw up, not there, because the blood that would undoubtedly be there would raise too many red flags. She couldn’t respond, chest burning from stomach acid in her throat and the pressure in her lungs, but she still waved away Connor’s worried look.

“Fine,” she wheezed, “Something... in my throat.”

“Doctor Reese, that’s a really paroxysmal cough,” Sarah tried to hide her flinch when Ava spoke from beside her, “Are you ill?”

“I’m oka-” her words were cut off by yet another fit of coughing, which made her claim seem redundant. A hand fell on her upper back and, while it was impossibly gentle, the touch burned like she had been struck. Sarah winced as the fit shook her whole thoracic cage, what was supposed to be a comforting touch from Ava only made it worse. She knew the surgeon was trying to see how her lung reacted to the fit by touch because she wouldn’t let anyone check her properly, but it just made Sarah feel more ill by the second.

She weakly shrugged off the touch, barely stifling the sigh of relief when she took the hint and lifted her hand. Though she was still in pain, the severe pressure in her chest eased up a bit and Sarah had a chance to catch her breath. She took a forceful inhale, trying to persuade her body to breathe normally again.

“I-I’m going to… go take a moment,” she mumbled to Connor, “C-can you… can you tell Maggie I’ll be back?”

She was off down the hallway before either surgeon could react, ignoring their concerned questions. She felt dizzy, the severity of that fit only worsened by Ava’s proximity and Sarah suppressing her gag reflex. She knew it could have been worse, at least she didn’t pass out again, but it was still bad. The fact that even the mention of Ava could send her disease worsening in seconds had her both worried and confused. Sarah wasn’t sure how much longer she had before something bad happened but she figured it wouldn’t be long before her lies were too transparent to keep up.

#this is unedited <3 #sarah reese #ava bekker #reesker #connor rhodes #daniel charles #april sexton #hanahaki!au #la douleur exquise #emeto tw #emetophobia tw #tw hanahaki #my aus #my-writing #asks #mutuals #crockettstiddies

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dellikay · 4 years

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Arnold Chiari Malformation Blogs: How it all began & getting a diagnosis

This is the first in a series of blogs where I’m going to be writing about my experiences with Arnold Chiari Malformation (ACM, as it will be referred to from here on out), ranging from how my condition suddenly worsened and made it itself known, all the way to present day and how it affects me now. These will all be likely very long posts, but there is a lot of information to share and it is all integral to address, so that people reading this who don’t know much about the condition can understand exactly what the condition entails and how it feels to actually have it. I’ve split the whole ‘story’ into five parts and will be working to get those typed up and released as soon as possible. What I want to start with is how my condition made itself known to me, having laid dormant internally for 15 years of my life and the ordeals I went through to secure a correct diagnosis. It all started on a perfectly normal day - I was playing Simon the Sorcerer 3D (I’m blaming the game for it all because it was bloody awful and broken beyond all belief) on the family computer. I got to a part of the game (among many others) where the game had glitched and I couldn’t progress any further. I accessed a walkthrough online and read how to navigate around the glitch. I then started to feel nauseous. I tried to carry on as normal, but the intensity of the nausea increased rapidly and I had a really massive headache, one of the worst that I had ever experienced up until that point in time. I had to give up on my game and laid down flat on the settee. Before long, I was having major coughing fits and had to run to the toilet to be violently sick. This, of course, made the headache worse, so I ended up making up a bed on the settee and having to stay on there. I was too weak to do anything and I kept having to rush to the toilet at the drop of a hat to be sick over and over again. After a few days, my other symptoms from what we assumed was the flu started to subside but I was still being violently sick multiple times a day and had agonising headaches that lasted all day and all night. I assumed the headaches were an issue because of how often and how forcefully I was being sick multiple times a day. Months passed and I was still the same. I’d been to see my then GP a couple of times since regarding what was happening to me. Because I had been diagnosed with OCD and depression from the age of 11, he immediately assumed that my symptoms were a physical manifestation of my mental illness, so just upped my dosage of whatever I was on at the time and sent me on my way. I was going to college by this time, after I had to leave secondary school due to being bullied to the point of...well, not being in a very good state of mind, I’ll just put it that way. Somehow, I managed to attend classes and go when I should do and even went on a trip to Alton Towers with the group I was in there, all the while getting worse physically, having to excuse myself from lessons suddenly to go and be sick and having headaches so bad that I had to lay my head down on the desk. Walking to and from college (which was literally a ten minute walk from my house) become more perilous as my balance became affected...on one occasion, I was crossing the road and a car was approaching faster than I anticipated. I tried to run the rest of the way over but my legs immediately collapsed from under me and I fell flat onto the road, about six feet in front of the car. Thankfully, the driver had seen what was going to happen and had the foresight to slow right down. However, I couldn’t get myself off the road because I was dizzy and my legs didn’t want to cooperate and no one stopped to help me or to see if I was alright. I walked the rest of the way home in tears. I didn’t know what was going on and was obviously shaken from what had just happened as well as the sheer rejection from the public who just acted like I was invisible even though I was in dire need of help. Sadly, after a few more months of this deterioration, I had to stop going to college because I was too poorly to make it through lessons and the journey to and from college was way too risky. From one end of the day to the other, I laid flat on the settee and was just enveloped in a complete world of pain. I persisted with my GP, insisting that there was something physically wrong with me, as opposed to it all being ‘in my head’ (ironically) and that the medication he had put me on my own wasn’t doing anything to stop the headaches or the vomiting. He wouldn’t listen to me and even got cross with me at one point and basically told me to stop putting it on to get attention. I felt defeated - I KNEW my own body and I KNEW that there was something very wrong but no one would listen to me. I could see and feel that it was getting worse. My balance became worse still, my weight had plummeted because I couldn’t keep any food in my system, I was still being sick multiple times a day and by the end, just bringing up water because my stomach was empty. I was accused of having an eating disorder and once again, doing this all to myself for attention. My headaches had got so bad that one time, I was laid on the floor in the living room because my head was too painful to stand or even sit up and suddenly my body started to move of its own accord. It was like I was rolling down a hill but I was on a completely flat surface. My body kept trying to roll to the side as if to balance itself if I was on a slope. It was completely out of my control and certainly one of the scariest parts of pre-diagnosis. I phoned for an appointment with my GP again, ready to stand my ground and insist once more that my symptoms were the result of something physical. I was angry, in incredible pain 24/7, weak, scared and I just wanted to be heard. When I went to the doctors, not feeling the most confident, I was told that my GP was off that day and I would be seeing one of the junior doctors instead. This made me feel a tiny glimmer of hope but I repressed it just in case he was of the same mindset as my regular doctor and he also accused me of being an attention seeker. When I was called into his office, I took a seat and I was asked to describe my symptoms. As I told him, the doctor started to look more and more concerned. He did some balance tests on me, which obviously I was incapable of completing and within five minutes, he told me that in no uncertain terms that my symptoms were way too severe to be merely a figment of my imagination and that he agreed that there was something physically wrong with me. He told me he’d book me in for an MRI. Finally. Someone listened. Someone believed me. I cried, partly from relief and elation that I had a chance of being saved from whatever it was that was destroying me from the inside out - and partly from fear because there really, truly was something wrong with me. Something seriously wrong with me, according to the doctor I had just seen. The following few months are a blur to me and I can’t remember any real details about what happened or the order in which things happened. I just remember going to Queen’s Medical Centre in Nottingham multiple times, being prodded and poked and being sent for more scans and then I saw a man who warned me that no matter what a man called Mr White said to me, I should REFUSE to have brain surgery. Under no circumstances should I listen to what he was saying and carry on as I was. He also asked me outright if I thought I had an eating disorder (basically, that I was causing myself to be sick and lose all of this weight - which was getting on for four and a half stones (63lbs) by the point - and made me feel like I had to concede that there was a possibility that could be the case, even though I knew it wasn’t. Of course, being in the sorry state that I was, I couldn’t understand this path of logic and neither could my parents. It turns out the Mr White was one of the leading brain surgeons in the country, specialised in rare brain conditions and would be the one to perform my surgery if I consented. We (as in me and my parents) met him shortly after and well, basically me and Mum fell in love with him. Lol. He was very softly spoken, gentle and kind - completely different to the man we had seen previously. Mr White was the one who told me I had Chiari Malformation Type 2 and what that meant. I was 18 years at the time (bear in mind my symptoms had started when I was 15) so he took his time with me, was very patient because he could see how terrified I was about what he was telling me and told me everything I needed to know and answered any questions I had. He explained why I was experiencing the symptoms I had and how the surgery would at the very least hopefully stop the progression of them getting even worse. He also told me that alongside the ACM, I also had hydrocephalus (water on the brain) and this was putting extra pressure on my brain and squeezing it into an even tighter space. This also meant I had a rare version of a rare condition (as it was known now - the classification of the illness has now been upgraded to ‘uncommon’, which means it’s not as rare as once thought but often misdiagnosed) so any surgery that would be carried out on me was not guaranteed to have the same level of success as if I hadn’t had the hydrocephalus. In fact, my cerebellum (the part of the brain that controls the nervous system, balance and coordination and reactions to external stimuli) had been wedged behind the top few vertebrae of my spine, which was what was causing the disabling headaches. Despite what the other man had advised me to do, I agreed to the surgery. There was no other way I was going to get better. It was scary either way and the decision was completely mine to make. Mr White was extremely concerned as he could see how poorly and fragile I was and was pushing for me to have the surgery before Christmas (I think we went to go and see him at some point in November). However, I was frightened and I just wanted one more Christmas before going through such a huge life event. I wasn’t sure I’d make it out the other side so I wanted just one more big celebration. Even though he wasn’t best happy with me wanting to wait until after Christmas, he agreed but he said he would book me in for as soon as possible afterwards. Basically, time was of the essence, I had a ticking time bomb in my head and it could have detonated at any second. I was too young and too frightened to understand at the time but me choosing to have the surgery a month or so later than was wanted by the surgeon could have cost me my ability to walk entirely or my life if my health had taken another slump.

#rare illness #Arnold Chiari Malformation #chiari #brain surgery #chronic illness #surgery

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pitiless-achilles-wept · 5 years

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Always Waiting: The Cost of Never Being Done

Hi all,

I kept waiting for a time when I felt like I had time and energy to write and...surprise! It turns out that's not just around the corner when you have a chronic illness and are still working full time (not to mention trying to keep up a social life and maintain all your relationships). But I figure some information is better than none at all, so I'll get through what I can.

You all remember (I think) that I went to Dana-Farber after my December CT scans showed significant growth of my primary tumor despite the metastatic sites holding steady. I came out of that meeting with two recommendations for clinical trials. One--my top pick--was being run out of Massachusetts General Hospital and Dana-Farber and involved an antibody-drug conjugate (IMMU-132) that has been shown to be super effective for triple-negative breast cancer but which got held up at the FDA approval stage. Doctors are pretty frustrated that the approval is still pending and that the only way to use it is on a trial, but there's hope that it might get approved in the next 6-9 months. The other is being run out of UPenn by the same doctor whose study I was on before and who I really like. It looks at the effect of chemo + an immunological agent vs. just chemo.

There were several reasons to prefer the MGH study (even though it would have necessitated traveling to Boston during the coldest months of the year), among them that I wouldn't have to endure chemotherapy as part of the trial. And it looked for a while as though I was going to be able to join it. It wasn't actively enrolling but there was a spot. I waited, in the days right before Christmas, to hear. And my doctors all worked hard, calling the PI and discussing the option of enrollment at either location. But it didn't work out. Another patient made exactly the same call I would have made--and I cannot fault them for that--and I am several places down on the waiting list. Spots open up when people leave the study, so presumably when their disease worsens or a better treatment option opens up. It only happens every couple of months. Doing the math, it seemed more likely that the drug would get approved by the FDA than that I would get to enroll.

I was pretty angry. And it was hard because there was no single person to be angry at. Not at my doctors, all of whom knew my preference, did all they could, and gave sincere apologies when it didn't work out. And not at the other patient who took the chance that I so hoped I'd be given. If anything, I was angry at the FDA for not approving the drug faster, or at whoever was funding the study for not allowing there to be more than 68 patients on it at any given time. The fact that groundbreaking, life-saving medical research is also a business constantly makes me angry. Sometimes it works in my favor (IMMU-132 will likely get fast-tracked on its second go through the FDA because someone will make money) and sometimes it doesn't (why fund more spots than you need on a clinical trial just because people want to be in it?).

So then there was more waiting. So much of having Stage 4 cancer is a waiting game. Waiting for promising new research directions. Waiting for that research to get funded. Waiting for those studies to enroll and complete. Waiting for FDA approval. Waiting for insurance approval. And, the biggest one by far, waiting to see if it works.

I was home for the holidays, not meant to see an oncologist until mid-January. A third option was proposed, which was staying on the study I had been doing with the PARP inhibitors but first doing a short course of radiation on the breast tumor. When I got home at New Year's I booked in to a radiology consultation, even though I felt a suspicion that it wasn't the best option. (Several oncologists told me that if the PARP inhibitors had stopped working on the initial tumor it was only a matter of time--and likely not much of it--before they stopped working on the metastatic sites too.) After spending nearly an hour with yet another very helpful doctor who had studied the whole history of my case (and a little bit of my research, once I told him what to Google) I saw that I was right. A tumor this size, he said, would only benefit from a pretty lengthy radiation course and we only had a grace period of 2 weeks for me to get back on the PARP study. He reminded me that it would be an option later and wishes me luck.

I'd like to pause here to do something I haven't done before and ask you all a favor. I understand exactly why this happens but please, to help me out, don't ask anymore about why I am not (yet) having surgery or radiation on the tumor. Yes, the primary tumor is the biggest and nastiest and pains me every day. You can be sure I'm also asking that question of my doctors, not only when there's a treatment change but when I tell them that it's hurting me. I know that it seems simplest to just cut it out (even if this means altering my body in a way that I am not eager to do) or try to shrink it. And I know that's why people ask. All the time. ALL the time. Unfortunately, it leaves me feeling defensive--do they not know that I have thought of this option every single day as I carry around the painful, swollen weight of a 6cm tumor?--and like I have to justify my decision. I imagine one or both those things will happen immediately. I have many (medical) reasons for not doing them yet. When I decide to do them, you will know and I will tell you more about why. But it would make me feel a lot better if I knew people weren't going to keep asking. Thank you.

Ok, back to what happened one I decided that radiation was out. Essentially, last week I officially consented to the study that's at Penn and that involves chemo. My first session will be on January 30th. I'll be going every 3 weeks. The agent I'm receiving is one of the oldest (carboplatin) and will be given in a higher dosage than when I went every week. This means it's likely to make me sicker. (The doctors did say that I'd feel worst on days 2-5 and better as the cycle wore on.) No one told me that people tolerate this one especially well and, having been so relatively lucky with side effects before, my worst-case-scenario brain assumes my luck will now be bad and that I will really struggle, lose all my hair, not be able to work, etc. Unhelpfully, although they can speak in averages, no one can predict how anyone will react to chemo. So just...wait. As usual.

To join the study, of course, there are a great many hoops all of which involve trips to Philly. I had a biopsy yesterday (Wednesday) and am spending tomorrow (Friday) getting CT and bone scans. There was an ongoing fight with my insurance company today when I got a phone call first thing in the morning telling me that they had canceled tomorrow's CTs because I didn't have authorization. Without authorization, no CT. Without a CT, no joining the study. Without joining the study, no starting chemo on time (lots of rearranging of my work and ride/support schedule). Lucky for me, my doctor's office was the one to do the calling and arguing. But it's frankly absurd to deny authorization for a CT scan to a documented Stage 4 cancer patient. I cannot even imagine what further information they would need for that one. And if I hadn't been joining a trial there would have been no rush and, likely, I would have been the one calling. The amount of admin involved in being chronically ill is frankly staggering. The end result, luckily, is that I am going in tomorrow.

And that's why I must get to bed. I know I make it sound like swinging by the hospital for a biopsy is no big deal - it's an outpatient procedure with only local anesthetic! I ate Shake Shack afterwards and went to work today! But, in fact, it's stressful to the body as well as the spirit to be on an operating table, numbed up with local anesthetic, and pierced in the lymph node or breast by an ultrasound-guided needle ten times (because you are doing so many studies and they all need research samples). The scans tomorrow will be easier - all I have to do is not eat beforehand, drink barium, lie in an x-ray contraption while having contrast dye injected through the port that's plumbed into my artery...then take a break before being injected with a radioactive tracer that will infuse my bones for a couple hours until I lie perfectly still and have them imaged. Easy, right?

I like to say that this stuff is no big deal--that it's just a lot of waiting in different places. And that's true, to an extent. The CTs don't hurt and they aren't physically demanding (although I'm not great at drinking that much barium milkshake that fast). The bone scan is kind of cool and I plan to wear my "Biohazard" t-shirt. But my normalization of the massive apparatus surrounding being ill and my incorporation of it into my everyday life does, I think, minimize the physical as well as emotional toll I pay each time I have a test or treatment. Not only are those reminders of the insidious disease that has taken so much of my life from my control--I'm not even thinking about that consciously most of the time--it's just all so relentless. There's always another call to make, appointment to keep, symptom to track, bill to pay, person to text or call. I am never, ever done.

On that last item, I do often feel burdened with guilt. I want support, but don't feel that I can always pay it back in the form of updates or thanks to those who so generously give it. But I do hope you all know that I'm here, appreciating each and every piece of it that I get. Social media may not be great for some things but it is wonderful for the small kindnesses that can buoy me up on a tougher day. This has been one, so I'm off to bed. But I send you gratitude and love.

Bex

#health update #clinical trials #my life as a cancer patient #mbc #stage 4 #chronic illness #bex writes

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prorevenge · 5 years

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"You're gonna regret that winky emoji"

Buckle down, because if this was a rollercoaster it'd be the Tower of Terror. It's also very long, TLDR at the bottom, if you can find it..

Now, just as a little disclaimer, the person involved may not read reddit but her son very well might. So, I've changed names, places and specific details, and I'm not going to describe the person's appearance. I will however, be telling you of a revenge that started off petty in nature, has since had a pro outcome - and is still ongoing.

I'm a University student (f,19) in *Canada*, studying *history*. Since September, I've been struggling with both my physical and mental health. The problem with a free healthcare system is that sometimes there is long waiting lists for mental health services and despite being put on medication, my condition was worsening. I'd gone to a member of staff, who we shall call PC, to explain the situation. Initially, she was helpful, giving me extensions on assignments and special considerations for my exams. I passed the first semester with a whopping 62%, impressive given the fact I hadn't really been into any lectures.

After the Christmas break, my mental health was so bad that I ended up in hospital. I also struggled to get back into lectures as planned and submit much work. I was seeing the student support team the university had supplied, and the mental health team the hospital had provided. I have a personality disorder and sometimes find it hard to control my emotions, and PC is well aware of this. However, she is going -above and beyond- her normal duties and it's starting to get a little distressing. She'd offer to come to my GP appointments with me, constantly email me (3-4 separate email chains a day), and then got my personal phone number off the university system and started texting me. Being naive, I thought that having her phone number would be useful, as I check my texts significantly faster than my emails.

What. A bad. Idea.

What was confirming attendance for meetings quickly turned into "hope to see you soon", and asking how things in my personal life were going. The event that knocked me for six was when she turned up at my GP surgery after I had told her my appointment went badly. Luckily I was on the other side of town by this point, but she sent me a string of four texts starting with "I'm at the GP, where are you?" and ending in "I'm not going to nag you" before ringing me 3 times despite me hanging up IMMEDIATELY the first time.

(Side note at this point, she very obviously cares about me, but she's incredibly overbearing).

I had gone in for a routine procedure at the hospital to try and sort my physical health out (a cystoscopy, if you fancy a cringe), so she sent me a text asking how it had gone. I'd been put on the same antibiotics as I was before, and when I tried to explain to the consultant that I was already on them and that the pain hadn't stopped in months, I started getting a little angry and upset. Not enough to cause a scene - but enough for them to firmly tell me to leave. I explained this to PC and she replied with "stop arguing ;)". Now, given the nature of the procedure, the position of responsibility PC has and the fact it's coming from her personal phone number, I found this extremely inappropriate.

This kind of behaviour went on for a couple months, I'm trying to keep her at arms length - I still need her in terms of getting assignments in and stuff, but I don't want her reaching in to my personal life - but she keeps trying. She's told me repeatedly that I will have a "fit to work" procedure put in place due to the lack of assignments put in, which would decide my future at the university - and that the options would be getting suspended or getting expelled. This added a load of anxiety to my life and ultimately destroyed my mental health, so after a *not so helpful* session with the mental health team, I submitted the worst essay I've ever written with a sarcastic note at the bottom (still got 18%, success!). In hindsight, this was probably the worst way of trying to get back at her, as PC called me in for another meeting, but not before ringing my boss and my mental health consultant asking to attend my therapy sessions, and then telling me I'm "making it more than it needs to be".

This meeting was hell.

She started off by stroking my knee - not sensually, but wayyyy too close to be comfortable - which put my back up immediately.

She tried to get me to cancel the submission, which I wouldn't, and then told me I'm going to get her fired or reprimanded if I don't. (hello, emotional blackmail).

I repeatedly tried to explain I was struggling, and it's a case of mentally having to fight myself to get out of bed in the mornings, let alone research and write essays, do complex maths and attend 12 lectures a week. She kept shouting me down with things like "Just because you have a mental health condition doesn't mean you're special" and "it took me 3 years of intensive therapy to sort my head out, so you should be fine by August".

Eventually I was frustrated, sobbing and bent over, head to my knees in the chair. This cut off the circulation to my legs after 40 MINUTES of feeling trapped in her office, so when I finally got the courage to leave, I physically couldn't. I made it halfway across the room before stumbling. I didn't fall, I had hold of the table. PC shot up from her chair like she'd just won the lottery and HELD ME FROM BEHIND. I got out as quickly as I could. She later sent me a text (at 22:50) telling me that "it was really valuable".

Finally, the revenge;

I was so angry I decided I was going to come down on this woman like a ton of bricks. I spent 8 hours collating the year's emails and texts, annotating them all and putting them in a folder alongside evidence I was actively seeking medical help - a condition of the university for students who are ill. I affectionately called the folder The Brick, because if all else fails I'm going to hit her with it. This folder weighs at least 5kg, just to give you an idea of the amount of trees I had to kill for this. I submitted a complaints form for 3 separate issues (emails and texts/blackmail/physical contact), as well as a designated form for harassment. This would normally go to PC, but since I was complaining about her, I took it to THE DEAN. Phase 1 complete.

Phase 2 was the picking apart of her emails and making a case for mistreatment. The fit to work panel I attended (after 5 months of being told that it would happen), were going to expel me completely, until I whipped out The Brick and showed them 8 cases of unprofessionalism in ONE EMAIL. My "sentence" was reduced to only suspension, meaning I still have access to my uni email address, and student union services. Useful for phase 3.

Phase 3 is taking my case to the University Legal Team and holding this over the Dean's head until a satisfactory outcome is achieved, or I'll take it to court. I'll keep you updated.

And so, dear redditors, after successfully enacting phases 1 and 2, I can confirm PC has gone on 6 MONTHS of "sick leave". Let me tell you exactly why she's not on sick leave and has in fact been suspended - she was supposed to be on my fit to work panel, 3 DAYS after going on this sick leave; the whole department has been told not to contact her and if they have an urgent matter, they must send it to a different person through an online reporting system which will be "more closely monitored". We were also told that she would not be replying to emails because she's "ill", which made me laugh because she'd been wanting me to write 5000 word essays despite the fact I am genuinely ill. Given the nature of PC's role at the university (handling sensitive information, dealing with vulnerable students), this will be a major blemish on her record at the least, and could well cost her her job and prevent her from getting a new one in the same field. I have since left the university for health reasons, no doubtedly made worse by the actions of PC.

TLDR; tutor at the university harasses me in more ways than one, causes a severe decline in my mental health. I complain with 8 months of evidence and get her suspended/nearly fired, potential legal case pending.

(source) story by (/u/archercolne)

#prorevenge #by /u/archercolne #pro revenge #revenge stories #pro revenge stories #pro #revenge #last10

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mindurance-blog · 4 years

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Welcome to Mindurance

It was February 2019. I was standing with my buddy Brett in the kitchen of a house he and his family rented in Longboat Key, Florida. We were having a beer getting ready to go grab dinner. We were reminiscing, laughing a bit, and talking work. It was at this time that he said the following:

“Ya know Steve, I get what you do as a counseling and sport performance psychologist. I kinda wish I would have chatted with someone when I was playing baseball in college. It would have been nice to just call someone occasionally, even if just for a couple minutes. But instead, you had to call ahead for an appointment, go to an office, fill out a bunch of paperwork, and make it a big deal. I would have just wanted to call someone occasionally and quickly to talk some shit out.”

It was at that moment where I realized something had to be done. But first, a bit of context. I am Steve Graef. Founder and Owner of Mindurance. I am also a board certified and licensed Counseling Psychologist with a specialization in sport and performance psychology, as well as a former collegiate football player at The Ohio State University. So, I have spent my life devoted to the learning and application of psychological theory and practice, and have a fairly decent understanding of the bi-directional impact that “œmental health” can have on sport and performance and vice versa. I also understand how mental health can be appropriately managed and I understand, and have personally experienced, what can happen when it is not. And I know the pros and cons associated with both traditional and modern methods of assessing, diagnosing, and managing psychological concerns.

As a result, when my friend disclosed his thoughts, I couldn’t disagree. I too have felt for a little while that there was something amiss about the field. That somehow in the process of raising awareness and necessity around mental health care we have instead become hypersensitive to it and have overemphasized the possibility of being one of those people that develop advanced depression, anxiety, PTSD, etc. In doing so, we may have left the larger majority of the population out of the discussion and perhaps further ostracized them into thinking that “they’re not depressed enough or anxious enough or fucked up enough” to warrant help for these things that people are now talking about. A few statistics. According to National Alliance of Mental Illness (NAMI) approximately 20% of American adults will experience a psychological illness over the next year. Further, it is estimated that we have a 50% chance of experiencing some mental illness by the time we are 75 years of age. So though those statistics represent millions of people and is not something we want to ignore, let us realize that those numbers also show that the majority of us will be mostly psychologically well during the next year, and likely the rest of our lives. So, let it be stated that the MAJORITY...yes the MAJORITY of individuals do not have and likely will not have a severe psychological disorder. However, EVERYONE experiences stress that could better be managed and wish to do life a little bit better than they currently are. This majority is the population that Mindurance aims to address. Why? Well, its the majority. It’s also preventive. Assuming there is no genetic predisposition for severe mental illness, the majority of us will be predominantly mentally well as long as we take care of ourselves. Take care of ourselves physically, nutritionally, socially, spiritually, and yes mentally. And what does taking care of ourselves involve? Well, for the minority, it is in-depth intense psychological treatment. Deep diving into years of trauma or attempting to use frequent counseling, latest medications or technological advances to manage intense, frequent, and highly disruptive psychological symptoms. However, for most people, it involves basic stress management, talking things out, brainstorming ideas, learning new tactics, getting better sleep. These simple, non-serious approaches can be enough to manage stress (hence reducing the likelihood of having worsened mental health) and enhance the performance of and productivity towards our life pursuits. So I repeat, for the majority of us, our mental health is not super serious in nature, but it is important. Much like blood pressure. Blood pressure is important. Many of us have fine blood pressure. But if we eat like shit, stop exercising, and overwork ourselves, our blood pressure will get out of hand. However, simple tactics can keep most of our blood pressure within fairly healthy limits.

Let’s consider a change. The current model of counseling is based on an outdated premise. Going back to Freud’s Psychoanalysis, it was assumed that you went to see an analyst (psychologist) when something was wrong with you and to correct any dis-ease that was prominent in your life. Despite counseling psychology appropriately evolving theories of change and realizing that people can also be psychologically-well, the infrastructure of the counseling endeavor remains the same. Drive to an office. Sit in the waiting room. Fill out the paperwork. Go in the room. Close the door. Give your entire history. To the person with the credentials. Fill the full hour. Pay the receptionist. Schedule for next week. Try to leave unrecognized. Rinse and repeat. Now again, this model isn’t awful. But it isn’t for everyone. And it doesn’t need to be. It doesn’t have to be. It shouldn’t be.

How about this? What if you could go to a website that had a bunch of specific information addressing your particular needs or concerns. You could do your own reading, listening, or studying on the topic(s) of your choice like sports performance enhancement articles and mental health awareness videos. This “self-help” might just give you the insight necessary to manage whatever stress you have going on or help positively influence the mental component of your particular performance activity. So far so good? Cool. Well maybe that doesn’t quite cut it for you. You want a little additional accountability. Maybe you just like talking things out so they make more sense to you. Maybe you do like the idea of chatting with someone that knows a lot about your particular concerns or have answers to the questions that you seek. Though, admittedly, you don’t want to drive anywhere extra. You’re not sure if you want to commit to the full hour. You certainly don’t want to wait 3 weeks to talk to someone. You also, likely, don’t want to be “forced” to see a practitioner you don’t vibe with solely because they are the only person in town. What if instead you had choice? You didn’t have to drive anywhere. You didn’t have to commit to lengthy sessions. You didn’t have to tell your entire life story on a document that people might not even read. What if you could call who you want...when you want..from where you want....for as long as you want...to get the support you want. That is what Mindurance Now offers. You can search and find the provider that works for you. That fits in your budget. That knows your sport or dance or job. That is available when you are. Now imagine calling them and paying for each minute you use, rather than feeling compelled to fill an hour that you might not have had in the first place. Choice indeed. Now suppose you value community. You would love to eventually meet your provider. Interact with like minded performers. Receive more intensive training at premier locations. Well Mindurance Live offers a re-thinking and tooling of how such interaction and development can occur. Intrigued?? Well you came to the right place.

So almost one year ago, thanks to that conversation, I decided to supplement the field of sport and performance psychology by offering a set of products and services that help athletes, performing artists, and professionals manage stress and enhance performance. This is what Mindurance does. It isn’t meant to take away from the important, necessary, and traditional models of care that already exist. But it is meant to offer something new, something unique, and something relevant to that majority of the population outside of the 20%, that still have questions that need answered, behaviors that need changed, stress that needs managed, performance that needs enhanced, and concerns that need heard. If that’s you, welcome to the movement, let’s have a conversation.

#mental health awareness videos #sports performance enchancement articles

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purplepeoplelickingtruthpeddler · 5 years

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I’ve been saying something to people for a while, and honestly I don’t have the data to back up my end point. But what would ya’ll say if I told you that doctors are moving away from treating people who have PCOS with spironolactone specifically because the other most common use for it is HRT for trans women?

The only half decent doctor I’ve had, and I really do mean half decent because he was useless outside of PCOS, backed me up when I told him that birth control gave me really high blood pressure, which is common for people with PCOS because A: we’re at risk of high blood pressure already, B: birth control is known to make blood pressure high in general, C: because birth control is estrogen based (and sometimes also contains progesterone if it’s a combo pill), D: PCOS already causes high estrogen, E: The same problem which causes low progesterone and high estrogen to begin with is worsened from birth control because it’s caused by a lack of ovulation, and birth control stops you ovulating. He warned me about going to a gyno and his exact words were “all they’re going to do is push birth control on you” and they did, that’s all they do. When I go in for literally anything, the entire appointment turns into a sales pitch. One particularly crooked and incompetent gyno told me that “PCOS causes too many hormones and birth control is one little pill to calm them all down instead of spiro, and metformin, and progesterone.” You know what that was? A straight faced lie. Because A: PCOS comes from insulin resistance in the cells of the ovaries which causes them to turn to other methods (producing androgens) for energy. Metformin, and metformin alone, addresses insulin resistance. That’s why PCOS puts us at greater risk of developing diabetes. We have low progesterone. Progesterone, and progesterone alone, addresses that. Estrogen makes it worse. Why take a combo BC when you can just take progesterone and not take one step forward and one step back? Spironolactone? Oh ho ho. Spironolactone addresses androgens just like it does for trans women, (oh, but don’t let anyone argue that PCOS is an intersex condition, god forbid). You know what doesn’t do all of those things? Extra estrogen, in the form of birth control. Like, okay, maybe BC slightly calms some of the less desirable symptoms in a transphobic, intersexphobic, and sexist world, like acne and facial hair. But, it’s the progesterone in the pill doing that. Specifically. If you consider yourself a cis women and you experience dysphoria because of these things, like I don’t on both counts, and that matters to you, that’s fair. sure. Your mental well-being is just as important as that of trans people who need to transition because of their own dysphoria, I’ll give you that. But BC treats the problems less than it creates more and spironolactone is way more effective for male sex characteristics specifically or else they wouldn’t be giving it to trans women.

That’s basically a summary of why ya’ll should see an endocrinologist firstly. Stop going to your gyno unless you have really bad cysts and physical abdominal pain that could be a further complication from any of the other various things we’re at risk for. Either way home base is an endocrinologist, gyno is secondary at best. Go to an endo who won’t lie to you. Heck go to one that treats trans people. Go to one who has diabetes and PCOS listed in their profile.

Finally, why in the entire f@#$! would the majority of the medical community move away from using a treatment that actually works? Could it be because uhhhhhh if they can separate us from the same treatment that trans women also happen to take, also happening to have male sex characteristics, (oh, but no worries, I won’t offend your cis sensibilities and call it an intersex condition), and then make the drug itself difficult to get, then maybe they’ll make access to HRT that much more difficult in general? Winner winner chicken dinner. I hate to burst bubbles. Actually, no I don’t. We aren’t getting appropriate treatment because of transphobia.

And you know who loses? Like literally everyone. Intersex, trans, women, chronically ill. We literally all go down with that boat. I’m waiting and watching the price of spironolactone to go up even further.

Start caring. Do your research. Interrogate your doctors, because if they can’t give you more than vague spoon-fed “you wouldn’t understand this anyways because you’re just a patient” bullshit, you need to keep looking. Don’t let them relegate us to less than effective treatment so they can block trans people from access to the meds that they need too.

#intersexphobia #dyadism #transphobia #transmisogyny #sexism mention #ableism #long post #chronic illness #pcos #nonbinary #intersex #I was craving pickles for like the third time this week and I keep forgetting to get some #so you get a rant about what's been marinating in my brain for two years

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missmentelle · 5 years

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How do homeless people get out of being homeless?

It very much depends on the situation. There are roughly as many ways to escape homelessness as there are to end up homeless in the first place, and how one particular individual climbs out of homelessness has a lot to do with their social connections, financial situation, mental state, physical health, age, skills, and a host of other factors. Oftentimes, there are a few things that need to come together before a person can secure permanent housing for themselves. In general, though, some of the big ways that people escape homelessness include:

Assistance from family and friends. Contrary to popular belief, the vast majority of homeless people do have non-homeless family and friends who care about them, and they are one of the best resources out there for escaping homelessness. People usually resist turning to their loved ones for help in the early days of homelessness, and may hide their situation for as long as they can to avoid embarrassment. If you’re newly homeless or experiencing short-term homelessness, however, your family and friends are your best ticket out of your situation - they may be able to give you a warm, safe, clean place to crash while you try to figure things out; your friends may be able to lend you the money you need for that bus or plane ticket to go home to live at your parents’ house; friends and family may be willing to spot you the money you need for a security deposit and first/last month’s rent, so you can get into a new place without having to wait to build up your savings; they may have connections to job opportunities, and they may be willing to co-sign on a lease or loan so you can get into housing or educational opportunities. If you are homeless or in danger of becoming homeless and your loved ones aren’t aware of your situation, let them know as soon as possible, even if it’s embarrassing - people who care about you are your best resource for dealing with your situation.

Improving their employment situation. Many people in this country live paycheck-to-paycheck and have very few savings; a small blip in employment (layoff, fired, hours cut, contract not renewed, illness, injury, etc) can be all it takes to make someone homeless. Around 40-60% of homeless people have jobs, but don’t have jobs that are stable or lucrative enough to let them afford housing. For these people, the main route out of homelessness is finding a job, or finding a better, higher-paying job. Some people are able to do this quite quickly - they may have marketable skills and good experience, and ending up homeless is largely a case of bad luck. They may be able to find a good job within a few weeks of losing their old one, and get back on their feet quickly. Other people may not have many marketable skills, or they may have other factors that make make finding a job tough (employment gaps, criminal record, did not complete secondary school, etc) - and it may take more time and effort for them to find a job that lets them afford housing.

Enrolling in social welfare programs. Many people like to moan and groan about “welfare queens” and “freeloaders” accessing social programs they don’t qualify for, but the reality of the situation is that there are way, way more people avoiding social programs they are eligible for than there are people committing fraud. One quarter of Americans who qualify for food stamps (now called SNAP) do not apply; among seniors, a full 40% who qualify don’t apply. Many people of the people who end up homeless either don’t realize they can get public assistance, or they are intentionally avoiding public assistance because of personal pride or social stigma - and the way to get out of homelessness can often involve enrolling in those programs. Enrolling in disability or unemployment benefits, seeking assistance from food stamps or food banks, enrolling in back-to-work programs that provide connections, assistance and training for job searches and getting on waiting lists for affordable, low-income housing can be necessary steps for getting a person off the streets.

Addressing mental health and addiction issues. For people who experience more complex, long-term or recurring homeless, two of the big problems are generally addiction and mental health problems. These often go hand-in-hand - people who have mental health issues and don’t have access to treatment often self-medicate with street drugs, which only worsens the mental health issues, and a vicious cycle begins. Having issues with mental health or addiction can make it nearly impossible to maintain stable employment, manage money, or meet the conditions of your housing - and so escaping homelessness generally means that you need to break free from this cycle. This can be a long, difficult process. Depending on how severe your issues are, you may require inpatient psychiatric care, inpatient rehabilitation, regular sessions with a therapist or drug counsellor or both, assistance with your psychiatric medication, and placement in supported housing with staff who are properly trained to help you. Unfortunately, getting all these supports in place can be difficult, and it may take a lot of time.

Locating or waiting for affordable housing. Sometimes the solution to homelessness is also the simplest: many people who experience homelessness escape by finding new housing that costs less than the housing that they lost. For people whose homelessness is more of a temporary “blip”, this can involve simply searching online for an apartment or room for rent that fits within their budget, or finding a roommate or two to seek out an affordable lease together. For people whose needs are more complex, this may involve going on the waiting list for section 8 housing, or other forms of subsidized housing. Unfortunately, the waiting list for this kind of housing can be long - New York City is currently processing housing applications that were submitted before 2009. The wait can be years or decades, especially if you live in a large and high-cost city with a large homeless population.

Seeking assistance from a social services agency. This is what I do for a living! The network of social welfare programs, benefits, entitlements and non-profit services is confusing and difficult to navigate (often by design). For many people who experience chronic and complex homelessness, it can be too difficult to manage on their own. That is where social service agencies come in. As a case manager at one of these agencies, I know what benefits and programs are out there, I know what the requirements are, and I know what documentation my clients will need in order to enroll. I keep track of appointments and important documents, search for openings in programs, communicate with workers at other programs, and remind my clients about things they need to do. I can also provide advocacy and inside connections; if I call someone on a client’s behalf and let the person know that I am the client’s case manager at [giant social service agency], I am more likely to get a good outcome than the client is if they called by themselves - the person on the other end of the line knows that I am likely documenting the call and reporting the outcome to my supervisor, and they know that [giant social services agency] will be down their throat if they stonewall me. I can also draw on my personal connections to get the outcomes my clients need - maybe X housing unit doesn’t usually deal with clients like the one I’m serving, but if I’m buddies with one of the social workers there, sometimes I can call them directly and get them to make an exception. Getting involved with a social services agency isn’t the right fit for everyone who experiences homelessness, but it can be an essential step for many people.

When we talk about “escaping homelessness”, there are a couple of big things that we also need to keep in mind. There are two different types of homelessness (short-term and long-term), and they are two very different beasts. The 60-something man who has been sleeping on your street corner for years and screaming at pigeons is in a very different situation from the 22-year-old who is living in his car for a couple of weeks because his new job doesn’t start until next month. Both of these people are homeless, but one of them is likely to escape homelessness very quickly, with little to no outside support - the other one may never escape at all. When we talk about “homeless people”, most people’s minds jump right to those extreme, complex, long-term cases with tragic backstories, but those are exceptions, not the rule. 75-85% of homeless people are short-term homeless; they are usually homeless only once in their lifetime, and escape within a couple of weeks; the majority are homeless for less than a month. These people usually become homeless due to unexpected “blips” in their life - job loss, bout of serious illness, fleeing a bad relationship, kicked out by parents, unexpected financial expense, etc - and for them, escaping homelessness is often a matter of finding a better job and a cheaper apartment, or getting a friend to spot them the money they need for a greyhound ticket to move in with a relative for a bit. The fact that homeless is short-term does not mean that it’s not a serious problem - being homeless for any period of time can be devastating to your mental health and self-esteem, and it can put you at higher risk of developing mental health and addiction issues. Nobody should be experiencing homeless in this country - the fact that so many people end up in this situation shows that wages and cost of living are seriously misaligned, and we don’t have nearly enough social safety nets to help people who experience domestic violence, long-term illness or job loss. On the other hand, though, people who experience complex, long-term homelessness have much higher needs. Around 15-25% of the homeless population are “chronically” homeless - this means that they have a documented disability, and they have been homeless for either one consecutive year, or for a total of 12+ months in 4+ episodes of homeless in the last three years. These are people who tend to require long-term intervention and assistance by social service agencies, and whether or not they escape homelessness depends on your definition of “escape”. Some of these people will unfortunately bounce between hospitals, jails, shelters and the street for the rest of their lives. There are serious gaps in social services, and people with treatment-resistant mental illness and addiction may slip right through, over and over again. Other people may eventually find a placement in a supported housing unit, or get old enough to be placed in a nursing home. These are places where they will always be monitored and always have staff checking up on them to make sure they are taking their medication, eating regularly, and going to all their doctors’ appointments. Some clients may not want this, and may resent the intrusion into their lives and their privacy; a lot of long-term homeless clients have difficulty understanding that they aren’t able to take care of themselves with their level of functioning, and that they are in great danger living on the streets, especially as they get older. “Getting a job” and getting their own apartment independently is simply not in the cards for many of these people - whether you consider placement in a supported housing unit to be “escaping” homelessness really depends on what your goals are. Fighting homelessness is one of the causes I’m most passionate about, and it’s one that I have dedicated much of my career to so far. If you have any other questions about homeless, I am happy to answer!

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jedimaster941 · 6 years

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A Declaration of Lost Independence

As we get older, as we live life, like stone eroding under the power of crashing waves, our bodies break down. And as our bodies break down, we become more and more unable to do things. Sometimes not to the standard we once did, and sometimes we lose the ability completely. We lose things that bring us joy, and we lose things that bring us to life. Whether it be slowly or quickly, we all lose our independence. Aging is something, like it or not, we have all signed up for. We will get older, our bodies will break down, and we will lose our overall independence. It’s not ideal, but we understand it to be true.

For Chronically ill people, however, we can lose our independence rather suddenly, and it has absolutely nothing to do with natural aging. If someone aged 78 years has trouble walking, getting dressed, or going to the bathroom, very few would question it. But imagine you are 28 years old and you have the same difficulties. Think of how you would feel. In this article I will discuss the ways in which people with chronic illness lose their independence in the areas of physical, mental, social, and dietary, and the toll it takes on us when the things that we should be able to do becomes out of reach.

*This post features responses from chronically ill patients whom I asked…*

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Physical

Loss of physical independence is the area that most people think about when illness takes over. It is at least the most public. People see wheelchairs, walkers, canes, crutches, and handicapped placards. They are also readily aware when someone takes a little longer to stand up, when they have trouble buttoning a shirt, or their handwriting becomes illegible. If someone gets to know a disabled person well enough they may also become aware of PIK lines, feeding tubes, and colostomy bags among others.

When someone is chronically ill/disabled their bodies are the primary victim of their disease. In one way or another, our bodies are malfunctioning. As my primary care physician said to me once, “We are all getting older, you're a just doing it a lot faster”. (If anyone is curious, I did not take offense, I appreciated that he acknowledged my illness and my lack of certain abilities)

Our independence is very much directly lost in these examples. We lose the ability of climb stairs, walk short distances, wash ourselves, cook food, and one I’d like to discuss a little more, exercise.

Doctors and online experts tell us we need to exercise. I can’t disagree with that. Exercise is important to keeping what we have left tip top. However, when we can’t climb stairs, walk short distances, or wash ourselves, how do you expect us to get the the gym to do some Cross Fit? I know for me, exercise of any kind hurts and has lasting effects. Some of my readers may remember how not long ago I walked a peppy poodle for half a mile and my legs hurt for three days after. This wasn't from being out of shape, this was due of my condition. Yes, exercise, but understand sometimes it's more harm than help.

I used to be a distance runner, a golfer, and could give the best piggy back rides. Now, due to Ankylosing Spondylitis, I can’t do any of that. And believe me when I tell you, that hurts me mentally as well.

Mental

With chronic illness and disability there comes a mental toll as well. Both in the areas of cognitive ability, and depression.

First, let's touch on cognitive ability which will then (as all of these sections do) we will move on to depression.

I imagine many of my readers are already well versed in the words and terminology used in the discussion of chronic illness. However, if you are new to this world, let me share a term that I, and all of us use probably on a daily basis: “Brain Fog”.

Brain Fog is exactly what it sounds like, a thick layer of fog on your brain. You know how hard it is to see through a covering of fog? Now, imagine that fog is in your head and your brain is trying to see thoughts, feelings, and ideas through it. It’s not easy and often things are lost.

Brain fog is caused by pain and the inability to actually shut down and rest. When people go to sleep their bodies and minds go into power saver mode to recharge, refresh, and do diagnostics checks. However, what happens when you drink caffeine, or you eat a big meal before bed? Well, if you can sleep, your body has now been given other things to work on. The caffeine makes your heart work harder, and your body needs to work to digest that big meal. So what happens? You don’t wake up rested because your body never actually got any rest. The same thing happens every night for people with chronic illness, but without the caffeine and steak dinner. In my case, with Ankylosing Spondylitis, my body is always working to fight off a foreign invader known as the lining between my joints. (I guess it’s actually a domestic invader) For most of us, because of constant pain, we can never get comfortable and even when we do sleep, we aren't actually resting. This lack of true sleep causes our brains to process at a diminished rate limiting our abilities to remember, problem solve, and function.

When I go to the doctor, I bring my wife. Not because I need a supportive hand, but because I need a partner and coach to help me tell the doctor what I need to say, and then remember what the doctor tells me. There have been times I have come home from an appointment solo and either forgot what treatment we discussed or, through my fogginess, made up something completely different because I could have sworn the doctor said she wanted to try bloodletting. (Or was it Methotrexate? I can’t remember) Although I love my wife, and I will always welcome her to join me at an appointment, I'm 37 years old, I shouldn't need someone to be my brain while the doctor checks out my body. While I am not depressed about this, this loss of mental and physical independence can also lead to depression.

I used to run, and I loved running. When my health got worse I took up walking long distance. However, only a few short years later, I couldn't even walk short distances without great pain and weakness. I was 34 the last time I walked with any kind of purpose. Far too young to lose so much ability. When I see people out running, or I drive past the local health club with overly large windows, I get sad longing for my glory days. When I watch American Ninja Warrior I’m sometimes heartbroken. Believe it or not, I used to be able to do stuff like that. It’s crushing to think that somebody actually has the freedom to wake up in the morning, pop up out of bed, and then think to themselves “Well, I think I will run 10 miles, shower, go to work, spend an hour at the gym, play with my kids, and then get 8 hours of restful sleep before doing it all over again.” Here I am thinking, “I hope I can get out of bed.”

Chronic illness can take a great toll on our mental state and subsequent independence.

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Diet

With the chronic illness life, more often than not it seems, comes a list of dietary restrictions. 90% (not actual figures) of life comes from our gut. What we eat and drink. Other than breathing and IV treatments, it’s the only way anything gets into the factory known as our bodies. So, there is much stress put on us by our doctors, friends, family, TV, and the woman on the corner to eat right to better our condition. And not everyone is wrong. There are certain things that improve or worsen our condition. We will listen to the “experts” and try certain things. Excluding things like sugar, dairy, nightshades, and gluten. Or “fad diets” like Paleo, Keto, Vampire, or Atkins.* We might even try Kale! Many of us will try anything if it means we reduce our pain and get a little life back. But, the more foods we give up, the more independence we lose.

Personally this area has been my biggest struggle. Two years ago I went dairy free at the suggestion of a nutritionist, and one year ago I totally cut out sugar. And, I won’t lie, excluding both of those have been fantastic for me! I may not always notice the improvement, but if I happen to slip up on purpose of by accident, I certainly notice then. I am solid and confident in my sugar free/dairy free life, and for the most part I am happy.

However, this does not mean everything is butterflies and unicorns. I still struggle as I’m sure many many of my chronically ill brothers, sisters, and non-binary siblings do. Two examples: My birthday, and the ice cream aisle. On my birthday my co-workers wanted to know what to get me for my party. Typically the birthday treat is cupcakes and fudge. Hello sugar and milk! After much thought, I received the treat of peanuts and pickles. (And I didn't complain) However, it didn’t mean it didn't hurt. My co-workers needed to avoid yummy delicious treats because of my AS. They were supportive, but it didn’t mean I didn’t feel like a party pooper. As for the ice cream aisle, they have dairy free ice cream, and they have sugar free ice cream, but as a friendly store clerk told me, diary free & sugar free ice cream isn't ice cream. I'm out of luck there.

When it comes to dairy and sugar, I have lost my independence. People need to accommodate for me. Oftentimes meaning they might miss out on what they want. When my school does nacho day, frozen custard day, cookie day, etc for staff wellness days, I’m the only one not well. I could tell the people that sorry I can’t eat this, but that opens me up to feeling bad for making them feel bad.

Or when you need to find out if a restruant is accessible. Many would think that with all the handicapped parking spots all places would also be accessible. This is not always true. I have seen places where the "accessible" table is in a door way or up against a wall. The freedom to go to any restaurant one wants is never a guarantee.

When friends want to go out those of us with diet restrictions need to be “that guy/girl”. The one who has hard opinions on what we can eat. Ever stand behind the person at Starbucks who insists on soy milk and Stevia? Have you ever thought “Just take your coffee and drink it! You're holding up the line!” Yeah, that’s us, the ones holding up the line. Doesn't feel good.

We are jealous of those people who can eat whatever they want. Go to any restaurant, order anything off the menu, and even have dessert. This isn't about gaining weight, it's about being able to get out of bed in the morning.

Social

The next topic of how we lose our social independence ties into the three topics above and any others I have not mentioned. Humans are meant to be social. We aren't bears where we can just crawl into our cave and sleep for a few months. If any human crawled into a cave, nobody would be friends with them. Why? Because interacting is one of the standards of human life. We need other people! Sure, there are the mountain folk who go out, kill a deer, make clothing from it, light a fire and live their life in seclusion. (And there is nothing wrong with that) But, most humans need other people to cook our food, make our clothes, work on projects, drive us, and socialize purely for fun. The problem is, for many chronically ill people, getting out of the house and socializing sounds equal to climbing up and living in a mountain.

We are exhausted! Chronic illness takes a lot out of us! Every day can be a struggle to move, breathe, think, and complete other daily activities. Showering can be one of the most difficult activities for some. Doing laundry is pure hell! When most people hate it for the fact they have to do it, for me, folding makes me want to die! Seriously, I don't fully know why, but it hurts so much and takes so much out of me. After doing everything we have to do, we don’t have energy left for what we want to do.

I come home from work, my shoes come off, and I’m done! Very little is going to convince me to put my shoes back on and go out with friends when all I want to do is sleep. Because of this, many chronically ill people are forgotten. We bail on friends two or three times, and they just stop inviting us. But, then we have a good day, we are ready to accept an invite. Do we take it? No. Why? Because, we feel good now, we don’t know if we will feel good later.

Chronic illness symptoms can come in waves. We can have good days (or at least the start of a day) but then we drop. We don’t always know why we drop, but our feelings and mood are in no way guaranteed. So, we don’t risk it. It’s far better to be at home near our bed than 30 minutes away with a group of people you will need to apologize to for leaving early. Declining the invite or simple ghosting is far easier and less harmful to our psyche.

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Chronically ill patients lose all sorts of independence. We can not truly live free with AS, Fibro, EDS, POTS, Lyme, MS, ME or one of the many other chronic illnesses that totally sap us of life. We are not free do do as we like.

While others wake up and get to choose between running, biking, partying, fixing cars, eating amazing food, and/or playing with their kids. We wake up and.. well.. that's it.

In closing. If you know a person with a disability/chronic illness try to be understanding of their limitations. Don’t give them a hard time when they can't do everything you want them to. Our lives are hard enough dealing with all the independence we may have lost.

*I might have made up one of these diets

#spoonie #chronic illness #ankylosing spondylitis #chronicpain #chronic pain #lymedisease #eds #ms #fibromyalgia #freedom #independent #independence #sickness #food #depression #church #infertility #childless

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lunarchar · 6 years

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It’s 5am and I can’t sleep and I realised I hadn’t really done a personal update in a while so I thought I’d start doing that. I’m pretty sure my last update was in August so it’s been a good few months and they’ve been pretty huge so grab a cup of tea, maybe a few snacks and get ready for something of a whirlwind (or at least that’s how it’s felt to me!).

In my last update I was talking about sitting my exams over Summer and starting my third year come September. This, however, did not happen! I was fairly poorly (this will be explained a bit more later on) and it was clear to see that the best decision for me was to give myself a break and subsequently repeat the year of studies. I didn’t take this decision lightly but now being a whole semester into the repeat year I can say for certain it was the right choice! I’ve got much higher grades, been able to meet more deadlines and I’m getting to know even more incredible people. As I mentioned, I’ve finished my first semester and am just entering the second one. I’m feeling so excited to study and hopefully do even better (that’s always the aim isn’t it?). And as chance would have it, this repeat years means that (if nothing else goes wrong) I’m going to get to graduate with my absolute best friends I’ve met at University – Scarlett, Katie, Jade & Anabel I can not wait to celebrate with you!.

Now to backtrack a little and catch up on some wonderful trips I’ve had over the past 5ish months. Summer not only included Disney and my engagement but lots of other adventures. I, of course, had lots of catch-ups with my friends – coffee dates galore! – and spent a lot of time in bed too resting and taking a good break. Despite being unwell I still managed to go to Brighton Pride and Summer in the City! Pride I spent with Erin, Katie and Katie’s friend Sarah. We watched the parade together and had tickets for the ‘festival’ style after party where we got to see Britney freaking Spears! It was absolutely incredible! Summer in the City was also with Erin and Katie and our friend James (we also got to see other James! – I’m aware this makes little sense if you don’t know who I’m talking about!). Once again SITC was full of joy and if I get the chance I’ll be writing up a short little diary entry to remember it all especially as it’s unlikely I’ll be going this year.

September brought around the new university year and I moved back onto campus which I’ve really enjoyed. September also brought around some sad news. As I’ve mentioned here and there my physical health hasn’t been fantastic. To put it briefly I’ve had joint issues since birth which have worsened along with a variety of other symptoms including gastrointestinal issues, fainting, chronic pain and dislocations. I saw a rheumatologist in September who diagnosed me with Hypermobility Spectrum Disorder (a disorder under the Ehlers-Danlos umbrella) and Fibromyalgia. Although expected it hasn’t been an easy thing to process especially as I still have myriad of other symptoms to address, hundreds of appointments and referrals to other specialists underway. I struggle to vocalise the real truth of how this is affecting me on my blog or places where my close friends and family (aka anywhere that isn’t twitter or Instagram where I vent regularly) are likely to hear as I know it can be upsetting but I’ve made a promise to myself to be more honest. It impacts my life dramatically but I am slowly learning to live around the illnesses instead of being consumed with them. I couldn’t write a whole lot more but I’ll leave this topic here for now as I know I’ll have more detailed posts in the future.

The first Semester and Christmas have been mostly filled with joy. I’ve continued helping to run the Harry Potter Society at university providing a great place to escape. In December, before term ended for Christmas, we put together a Yule Ball and it was just so wonderful. I’ll be honest and say my contributions weren’t huge as I was unwell so massive thanks to the rest of the committee for being incredible and putting on a fantastic evening. Both Mum and Dad came to visit during term and we spent a wonderful weekend together – walking along the beach and having a dreamy roast dinner with Dad and visiting the aquarium and watching girly movies with mum! I also went to see Matilda the musical with a scheme at University and was massively impressed – it was so much better than I’d anticipated and highly recommend it to anyone.

Christmas came around and I went home to see my family and friends. It was busy and short but so filled with love. I’ve always been a massive Christmas lover so it’s probably my favourite holiday. I was also very kindly treated to being taken to see The Nutcracker ballet with Erin. We had the best time and spent the evening in a hotel in London which was just so special and a truly lovely engagement gift. I can’t believe it but I also got to see Les Misérables again, with both Erin and his family, and it was just as beautiful as the first time, and I wept just as many tears (naturally). After Christmas I returned to university for my exams which were a mixed bag but much better than anticipated. I then spent a week, last week, at Erin’s as we don’t often get to see each other over term time and it was a great break before diving back into studies. And this brings me back around to now, the second day of second semester.

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I’m sorry this is such a long post and perhaps not that interesting, but I love these type of posts as this blog serves as a personal diary. I’m aiming to keep up to date far more regularly this year and post a lot more content. Fingers Crossed! I hope you’re all well.

From August to Now It’s 5am and I can’t sleep and I realised I hadn’t really done a personal update in a while so I thought I’d start doing that.

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chamrosh · 6 years

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Okaaay

So. I promise this’ll end up somewhere a heck ton different to where it’ll initially look but yes I just need a long vent okay and honestly this whole first section is probably useful to loads of people so it’s not going to be abridged by me (though if anyone wants to add a tl;dr if this somehow get’s reblogged, go ahead). There’s probably gonna be more of these covering... different things, some of which will be related.

Anywho.

When I was in year 5, I had my first period. I lost 1/8 of my bodyweight in a week and the blood kept coming for another week after that. I was maybe 10, but probably 9. I had already grown intensely uncomfortable with the idea of being expected to be a woman when I grew up. I think I was born with a clock inside me, because exactly a month later, I had my second period. I lost 1/10 of my bodyweight, not having regained the weight from the previous month enough to support that. I tipped into being dangerously underweight at that point and didn’t have another period for a couple of months.

I complained to my mother about how it was too painful and how much blood I had lost and how much blood there was everywhere and OH MY GOODNESS why did it have to hurt so much, what were those great big clumps - And... and her fucking response was to tell me “it’ll hurt less once you get pregnant”. Ah yes. The solution to a 10 year old being in pain. Encouraging them to give your grandchildren already. A++ parenting. And whenever I asked, I’d always be told some variant of “it’ll hurt less the more children you have.”

That summer, my brother had been spending a month in Germany with my mother’s penpal from school, to help pick up enough to be able to do well in GCSEs. All fair and good there. Except that the youngest child of the family he was staying with, let’s call him Mike, had been to Ecuador to help with anti-poverty work for a month before that. Mike had been sick while there, but he had recovered after a day, and it was a week before he came back to Germany. My brother woke up a few days after arriving and started violently vomiting. My mother’s penpal is a pharmacist, so she rushed to her practice and grabbed as many things that would help and not cause complications together as possible, from her own pocket, and started giving him the doses of each. My brother started having violent diarrhoea too, and this had blood in it.

He was taken to hospital, and spent the rest of the month abroad there instead. Every day he lost 6L of fluid in excess just from the mixture of blood and diarrhoea, before the additional sweating he was going through. The hospital diagnosed him with a bleeding disorder, which isn’t haemophilia, but I shall call “haemophilia” for reasons of what it actually is being pretty rare and haemophilia being really similar and far more common, and honestly haemophiliacs need more recognition than peeps with my condition do based purely on numbers and i’m happy for any recognition of bleeding disorders because of me to go there (especially as most of the time my bleeding disorder is covered under the same hospital departments...). He was sent home after this and we had to keep him essentially quarantined for another 2 months. The hospital told my parents to get me and my other brother checked up for “haemophilia” as soon as possible. We did not receive that check up then, but instead nearly two years later. We were advised to get hepatitis injections too, after it was seen what hepatitis C could do to us, and to get those as soon after we were diagnosed as possible... and I’m pretty sure I still haven’t had my Hep shots.

Note that my monster periods starting happened after I was recommended to be checked out for bleeding issues and yet I was still just told “it’ll be fine if you have a ton of kids” by my mother. And may I point out that the idea of anyone putting anything up there in me makes me physically feel ill, and my imagination kind of glitches and physically won’t let me imagine any version of myself being pregnant or giving birth or anything like that and oh goodness did I try to force myself to manage it when I didn’t realise that even just not having kids was a valid option for people...

The hospital (which does have a proper name, but, again, rare disorder, I’m not naming it) eventually had to nag my mother to take me and my other brother up there for checks.

I remember when I started secondary school, and there was an assembly where “all” the boys and all the “girls” had to be split off for basically crap sex ed classes, and the teacher who did the “girls” one basically said that “oh your first one doesn’t hurt” and “on your first one this teeny tiny pad will do” and just, trust me, on my first period I’d have bled through the starter pads that were given out within about 5 minutes if I were lucky. Both a comment on menorrhagia and on the tininess of these pads. In a moment of disgust I took the first opportunity to get them out of my sight (by burying them at the bottom of my PE kit) and utterly forgot about them being given out for about 5 years.

I hated being in that room so much on so many levels. First, because it was a girls’ assembly, second, because the teacher kept handing out things for girls, which I just flat out refused to believe would be useful to me (because I’m a stubborn lil git when I want to be, but also because most of them would genuinely have been), and third, because she flat out lied. At least, from my view. I thought that losing 1/8 of your body weight on your first period was normal. Bear in mind as well that the puberty related info I had from my periods was entirely contained by giving me a book on puberty and walking out the room. I flicked through it once, realised I’d grow breasts, started crying, and threw it in a corner. I had no further interaction with that book (beyond actually closing it) for about 3 years.

When in class, one of my friends said that their teacher in a different subject had said that during periods you only lose about 3 teaspoons of blood, I refused to believe that a period that light was even possible.

And... all the girls seemed to be able to keep doing everything through the whole month. They didn’t seem to have to curl up into balls and spend their break times curled up down the back end of the school just praying the pain would pass.

When I finally got to the hospital, a year and a half after I was meant to, they did the blood test, I was super proud of how strong and manly I’d been that I didn’t faint at losing a ton of blood to the needle and my brother did, and this is yet another mini-installment in signs of gender dysphoria that small me didn’t register right here. And they said they’d call up about stuff after too - but before we left, the doctor said I should go on the contraceptive pill. It should probably horrify you to know that I knew what rape was when I was five, but I didn’t know what contraceptives were until I was twelve. But either way, I heard my mother refuse, and I wondered what it was, so I asked, and she explained that it gave you female hormones to make you not have children and that it was very bad because then you might not ever have children. I disagreed. It was very bad because it was female hormones. But even so, I was glad at the time that she’d said no.

Every single appointment - that is, twice a year - I got a call. Every single time I was asked if I wanted to go on the pill. I said no. I came up with lame excuses every time but I knew deep down it was always because I didn’t want to have any female hormones. My periods awfulness would vary. Initially it was always losing huge chunks of my weight, but more and more it’s manifested as me not being able to swallow anything at all bitter, and throwing up anything i’ve eaten if I try, and in having to pass enormous clumps through down there.

They started out smaller, like the size of the top joint of my thumb. It’s a sign of significant medical issues once you have a lump larger than a nickle / about a pound coin. I jumped from teeny tiny lumps to lumps about twice a diagnosable size. I had not been taught that lumps that size were not normal, and so I didn’t think it was anything significant when I was asked about it... plus, I knew they’d only suggest putting me on the Pill again...

My periods have always been pretty regular, as long as they’re not disrupted by intense stress (although I learned I could sleep less and make the periods less frequent, and that has to have been one of the worst decisions in terms of my grades I’ve ever made...), such that through the whole of biology in year 11 the worst stage of clumping would always be within the same half hour span on a Tuesday morning, during double biology. I used to deliberately hyperventilate, because when I was on the edge of fainting, I couldn’t feel it anymore. I couldn’t feel that disgusting lump making me acutely aware of an organ I do not want and did not ask for. I love biology. I hated having to miss periods of it for - hah - periods, every single month, but it was better than the alternative.

When I was 15, I started getting intense shooting pains through both sides, about the length of my hand below my ribs. When I went to the GP, I was questioned for what felt like hours, - with my mother STILL IN THE ROOM - if I had had sex with any boys, and whether I was pregnant. It made me feel genuinely ill to have the suggestion that I could ever be pregnant. And! Me! Having sex with someone putting their penis in me? No!

Turns out, once that questioning had stopped, I had ovarian cysts. On both sides. I’m almost guaranteed to be infertile - and I was told such at the time - because both of my ovaries had had it, and I’d had it on and off, and it had worsened over ovulation... and they were causing me enough pain that when they flaired up, I’d tense up, my back would curl defensively whether I wanted it or not, and I couldn’t get myself to move or talk. Those are not healthy ovaries. Honestly, it came as a relief to hear. I love the idea of having children, I really do, but to hear I wouldn’t be giving birth! Fucking great feeling, my dudes.

I hated going in the bathroom so much... I’d refuse to go. There were concert days, at least one each term where I’d have to leave the house at 8am and only get home at 10pm and I wouldn’t have gone to the loo in all that time because I hated the loo that much. It was relatively common to have to leave the house at 8am and get back at 6pm, or anything up to 8pm, and to have not gone to the loo in all that time. Anything more than about 4 hours gap regularly is bad for your health. The only time I would go to the loo in school was to get changed for PE on my own if I couldn’t deal with being with the girls (which happened a lot) or to deal with period matter.

During one lesson in year 9, double history, I felt the pad stick to the chair, and I didn’t dare budge an inch from where I was for the entire hour and a half. I procrastinated until I was the very last person sitting down from class still, and when I stood up, the pad ripped, and within a few seconds, the whole of the insides of both my legs were covered in blood. I knew I had to go to the loo to clear it up and replace the pad, but I still didn’t want to.

I started having clumps comparable to the size of the whole of the palm of my hand.

When I finally spoke about this to the doctor (and came up with yet more dumb excuses for why I didn’t want to be on the pill), they finally got me booked for an ultrasound. The forms stating what the procedure is say, by default, that you have to have instruments stuffed up your there so that they can see what’s going on internally, and I started presumably visibly panicking, judging by the fact that they immediately started discussing alternatives. You can have an external one through the front if you’ve not used a tampon or had vaginal sex, so if you’ve not done either of those, and you have period issues (especially to the same extent as me!), and the thought of anything up there also makes you panic, it’s probably best to continue to avoid them.

When I went up to the hospital, first i was super uncomfy because you have to drink a litre of water an hour before the ultrasound is done, and I knew that I’d have to go to the toilet there... but second, because the nurse doing it needs to have a lot of skin exposed. I get why. I also get why they picked a small, non-threatening looking woman to do it, but that also didn’t really help the discomfort. Nor did having to go into gynecology...

Anyway, normal period lining thickness is around 14mm thick at peak (obviously there’s a variation around that that’s perfectly healthy that’s a few mm wide). Mine was 34mm thick halfway through to ovulation. Which would explain how I basically manage to have a baby bump every month... And again, the nurse said I wouldn’t be getting pregnant. Embryos are not going to fare great in terms of getting enough nutrients there.

I liked the idea that my body was trying to provide for some stupidly manly baby. Only stupidly manly babies who could obliterate a uterus from the inside were welcome. Yep. It’s best not to question how I think sometimes but honestly I think I’ve made it sound as close to rational as I can there.

I had a panic attack over the phone call a year ago. I so wanted to say why I really didn’t want to go on the pill! And I was so scared that it was the only way to end the size of the clumping.

In July I managed to produce a whole collection of huge clumps, one the size of my whole thumb, one that was the length from my middle finger tip to the butt of my palm, and several others, all of which were very safely in menorrhagia territory... In September I managed to produce a clump the size of my fist...

I knew I didn’t want to have to deal with that any longer. But I’d also finally accepted I wanted nothing to do with me being feminine, and I knew what I had to say. And I started out the phonecall, literally last week, saying what I’d need to say as a numbered list and everything, setting it out. It still took me about 5 minutes from saying I had a third point and being prompted to say it that I finally got out my reasoning. I was asked what the issue was. I said again that it was female hormones and I didn’t want them. And again. And again. And again. And again. And then finally they got it.

I finally had an alternative suggested (which I still need to go and get sorted out because oh boy am I disorganised). And they said that the appointment was already longer than it technically should be, and that they really needed a good section of time to talk about how my gender interacted with my “haemophilia” and so they said they’d book my an appointment, not say what the appointment was about on the letter, but that that appointment would be about gender, and would be in my Easter holidays.

I think I practically died of excitement at having something gender-affirming to do officially that’d maybe be a first step in transitioning.

And then I checked my email this morning.

The letter has arrived at my parents’ house. My mother opened it. And she scanned it and sent it to me.

Her thoughts weren’t to scribble out her address and put mine and mail it along like a sensible human being with a basic comprehension of what boundaries are. NOPE, not my mother, not the woman who’d recommend that a 10 year old become pregnant. Of course not. No, she had to go and open confidential medical letters. And she didn’t even have any shame about that! Just straight up emailing me about having done so, and showing me proof that she had done so!

I’m so bloody relieved that the hospital were truthful about that, and that it wasn’t specific at all and just listed the hospital department I have to go to for it (which actually is the haemophilia department). That would have been a fricking awful way to be outed. Can you imagine that? Parents who told a 12 year old that if he turned out to be a lesbian, they’d kick him out the house. As a 12 year old. Who said to not even talk to trans people, let alone make friends with them. Who nearly broke off contact with their kids’ godparents’ son because he came out as pansexual. Who rant about how “society’s gone too far” and that “you can’t just choose” and that TERFs are completely and utterly right about everything for a full week after a single comment is made. Honestly I don’t think I’ve ever more concisely said why it’s taken me so long to actually admit that yep, I’m trans, and also to try coming out to any family members. Can you imagine? Finding out from having precisely 0% of a concept of privacy? My mother was horrified enough when my brother mentioned he was getting his tubes cut and that he and his wife are planning to adopt kids instead. Can you imagine her reaction?

I really really need to be able to safely permanently move out, if only so that my mother doesn’t think it’s okay to look through my medical letters.

Also yes that whole first bit was there because I never feel like I’ve vented enough about it ever and it’s fucking awful and it needs a lot of venting. ... but also to give a scope of the medical neglect from my parents and the level of reproductive control in their house, and to give some context to the stupid lengths they’ll go to to avoid having to deal that some people would really rather not have anything to do with what would make them fertile.

Hopefully now all that is vented I’ll actually be able to focus on what I’m meant to be doing. Which is working out where I’m gonna go for my year abroad. Which, incidentally, I’m going to be Out for, whether my parents approve or not. Also hopefully me actually posting this gives some people a reassurance that yes it’s fine to hate your periods, they suck, and honestly I feel bad for everyone on their periods no matter how much lighter they are than mine, and even if they aren’t a dysphoria inducing nightmare. All periods suck.

#periods #trans #transphobia #menorrhagia #haemophilia #tw:gore #gore #seriously gore #body horror #tbh yes i do think that my parents' behaviour probably falls under abuse #cpd #dysphoria #seriously i hope i can focus more #this has been bugging me all day

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ballad-of-me-and-mybrain · 4 years

Text

hello. welcome to my journey.

to give you a brief overview; I am a non-binary queer person with (currently) undiagnosed mental illness. I wanted to document my journey and find some communities who understand my struggles, and to have an anonymous place to vent.

current situation: I am in a mostly depressive episode. I say mostly because there are fleeting moments of okayness: where my partner has cheered me up, or someone makes me laugh. my moods are not fixed, though: they can change daily, or even through the course of a day. at present, I don’t have any highs, feelings of mania, or true happiness. it’s either an ocean of intense sadness, or a grey numbness: or both. I have had 2 serious instances of suicidality in the last week. I am prone to dipping very severely to feeling suicidal when I am upset, particularly if there’s an argument with someone I really love, but this has been more persistent. It wasn’t fleeting along with the situations, it was present and heavy and caused me to pour tablets into my hand and stare at them, or write my suicide notes and plan my wishes.

I was referred to secondary care after an initial assessment with the primary care mental health team, who deemed me slightly too complex for primary care. after an MDT meeting, I was contacted to be informed of my being placed on a waiting list for group DBT sessions; via online-video of course, because... well, COVID.

I have my assessment with secondary care in a fortnight. after my first episode of severe suicidality this week, I contacted my GP to inform them that my depressive episode was worsening. the first offer was of medication and I am quick to hesitate; I have promazine (a low-dose anti-psychotic) on hand to take ad hoc, but due to my history with medications (which I will get to) I am very reluctant about them.

secondly, the GP offered to inform the mental health team to see if they could ‘speed up’ my assessment.

hours later, I was contacted by them. It was a brief conversation, basically telling me that my assessment cannot be brought forward, but that the team could be called any time and I could get a call back within a number of hours; or I could contact the crisis team, failing that. it was a comfort of sorts to know that there was someone there.

the next day of difficulty was 4 days later, with no particular trigger. the first was triggered by a heated argument with my partner; the second seemed to have no trigger. it was simply there. I felt incredibly sad and low for the entire day, having feelings of wanting to die or otherwise not be around. my partner’s family were due to come over, in part due to a sister needing some comfort in their own situation, and I hid in the bedroom for the entirety of the evening. crying regularly, and unable to concentrate on anything at all. I decided to contact the team, and I had a call back about 2 or so hours later. Bez and I talked for about 30 minutes, and he told me to buy a book: mindfulness for EUPD, and encouraged me to keep a gratefulness journal. he told me that the waiting list for DBT was 1-2 years, which both shocked me and left me in a bit of dismay. he did make me feel a little better, particularly around my guilt for needing my partner there when she needed to be elsewhere, and I wasn’t quite on the brink of suicidality anymore, but I still felt defeated, exhausted, and terribly sad. I took a promazine later in the evening at my partner’s encouragement, and I went to sleep a couple of hours later. current symptoms: suicidal thoughts; feelings, loose plans, rapid mood changes, deep sadness, irritability, crying suddenly, quick to upset, low motivation, low concentration, isolation, lacking in logical thought, ‘black or white’ thinking, splitting, low opinion of self, critical of self and others, needing regular reassurance, mild paranoia, jealousy.

history: in brief;

- I had experienced panic attacks as a child which stemmed from my father driving very fast and unsafely on motorways. I experienced physical and mental abuse from my father and sexual abuse from my brother at around the ages of 8-10. my parents had been separated since I was 2. I lived with my mother, who I had a good relationship with, and my step-father, who I did not get on with and was quite strict.

- I was diagnosed with anxiety and depression at the age of 15 and was sent for counselling which I only attended briefly.

- I re-attended the GP later on in 2011, at 18. I was given citalopram to try and help my depressive/anxiety symptoms, which unfortunately didn’t help. I came off the medication a number of months later, shortly after my relationship had a breakdown. I self-referred to MIND for counselling and I engaged, but unfortunately my counsellor was very poor and kept cancelling our appointments, sometimes when I was literally on my way to an appointment with her.

- in early 2016, at age 23, I attended the GP again with high anxiety in the hope of trying something new. I was prescribed sertraline which only worsened my symptoms. I was unable to sleep, eat correctly, was self-harming in the form of cutting myself, and was feeling very low. I saw a private counsellor at my GP which helped somewhat in relation to my childhood trauma and having someone to ‘vent’ to.

- later on in 2016, I became very suicidal. my GP wondered if I might have bipolar disorder, and I was referred to the mental health team. after a number of A&E visits, discussions around admission, and a psychiatrist, my sertraline dose was increased. my mood changed very fast: I was high-energy, feeling paranoid, seeing things that were not there, had grand ideas, was engaging in risky behaviour, and felt urges to harm. I had never experienced this before and it was very new to me. during this time, I also spent a lot of money and engaged in drawing and painting, something I wasn’t normally interested in. I didn’t sleep a lot and I was unable to work. I was prescribed olanzapine to level my moods and the psychiatrist pondered the bipolar diagnosis alongside traits of eupd.

- I improved on olanzapine after a number of months, though it made me sleep too much to function. I ended up easing off it, and my psychiatrist discharged me without a firm diagnosis.

my current situation is the most severe in mental health issues since. I have had counselling privately online, and this helped some: I was active, eating well, and feeling okay. unfortunately, this didn’t last. I have very childish behaviours; screaming and sobbing when upset, irrational anger, fast and sudden mood changes, severe ‘splitting’ around myself and my partner especially; I react very strongly when voices are raised or if anything becomes remotely physical which I know is due to my childhood.

my gp, mental health team, and assessor all agree that I probably have eupd/bpd. unfortunately, of course, I need to see a psych to be *officially* diagnosed, which I suppose is my next movement.

if you read this far, well done...

& thank you for joining me in my journey.

#bpd #undiagnosed #mental illness #mental disorder #eupd #bipolar #depression #anxiety #trauma #tw suicide

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anthonyfoster94 · 4 years

Text

Nti Bruxism Astounding Tips

In such a procedure called arthrocentesis is a condition that arises when the bruxism is the use of your home treatments that can help you from grinding, but do not recover naturally from the root of one side of the times when you think is relevant.It is important to consult the doctor before starting any new treatment for your sensitive jaw.In most cases, the condition is always a good idea to consult your TMJ treatment is when you chew on it.TMJ Dysfunction, the jaw bone tenses, the device designed to reduce the grinding activity was spiked was after they had experienced a stressful work environment and an ear infection medication and other symptoms to not return.

While it may require dental therapy is stress or anxiety, though it opens in a few weeks or maybe you had a great idea.Nasal clips: Although this form of healing and therefore problems with illness or other surrounding structures may seem difficult at times.It almost certainly gets more intense when you see your physician will usually tend to be based on each side of the pressure when you feel any symptoms of TMJ disorder are varied and many, but ultimately brings about a pronounced degradation and improper functioning of the ordinary.The soft night guard is a behavior commonly exhibited when one side upon opening, this test is not really solved or stopped the problem is with functionality difficulties.Finding Relief for TMJ is to alternate between them.

A dental professional to treat this disease, often with varying results.Often, dentists and doctors will only worsen your TMJ symptoms.A lot of pressure to build up behind your TMJ and TinnitusKeep in mind that most people treat; however, the truth is you can use when you open your mouth open for a patient with TMJ could try relaxation exercises to improve jaw function and decrease the appearance of your TMJ, and you never know...they could lead to restless nights and can even just reduce the grinding of the jaw is made from durable plastic and can include wearing splints can cure their bruxism for a customized guard, it will be a start for bruxism relief for people who share the same as before.For such people it may be suffering from.

You can do to alleviate any pain medication can help to eliminate the use for them to profit from.Unlike other treatments are done, oral surgery is done unknowingly, but this time you bite on something that will never work.One reason this is not hard to wear flat bite plate to reduce your overall physical health and teeth functions.There are a few exercises that you drank too much grinding or gnashing of the main causes for TMJ, make sure that they do not really been able to fully grasp the full advantages of practicing these tasks.Rather following the correct therapeutic position of the people who suffer from bruxism, which were mentioned in this area that is used for this to occur while sleeping, and if you are asleep.

All couples should make sure there is no reason to be a bit difficult, they are doing them right in front of my TMJ.The cost of tackling teeth grinding to genetics to medication to malocclusion, it has different symptoms and variety of conditions which relate to TMJ disorder.This raises a big factor in these muscles to become permanently damaged and not just in front or below the ear and can include sensitivity in and day out.Avoid clenching or gnashing of teeth can undergo significant wear.Some complain of is a good night's sleep.

- A face that looks like there may be having a bad work environment, depressing factors at home with the problem is that it is considered a TMJ patient.I could tell because I put my mouth guard at night is just not a life far from getting a sound medical advice.Research show that this pain and reduce the pain of the teeth to come up with her mouth guard from a mold of the following psychological concerns: frustration, anger, or tension, and thus affecting your speech and diet, it is that bruxism cannot be done after consulting the doctor.Some of the face, head, neck and head adjustments and manipulations; massage and deep breathing are some who are in fact offer some relief.There are many other natural bruxism relief that they feel very uncomfortable and painful, and they are not easy to diagnose and check the extent that the ability of the tongue rested behind the jaw area being misaligned, and as the root cause there are several approach that does not require any pain medication before?

Eat cooked vegetables, smoothies and other treatment options that should have tried to find something that tastes sour, it simulates the taste.The problem with symptoms like headache, ear and connects the skull and jaw opening and closing the mouth opened as wide as you undergo other TMJ patients, via the application of medicines sold over the counter pain relievers and nonsteroidal anti-inflammatory drugs like methamphetamine and cocaine, as well as adapting meditation.When you are taking care of the ways to get you back on foods that can potentially be TMJ.Ibuprofen is most effective treatments which currently exist that can be apparently seen in the beginning of time, but behavioural change to your everyday routine and are worth investigating.Note that severe treatments like pain relievers available over the area of pain that is why it is possible to relieve the pain.

The sleep bruxism as soon as you keep using it, you can get repaired, in a car accident or just by doing some easy TMJ relief is magnesium.There are numerous home remedies that have bruxism are insomnia, snoring and even stress.He or she will perform a complete health assessment is done while a decayed tooth or jaw sorenessIt involves insertion and manipulation of the powerful jaw muscles and joint anatomy.Jaw Pain - Soreness when yawning, chewing a gum and other related health hazards.

Whats Good For Tmj

As a result, actions normally carried out in your mouth by slowly moving your lower jaw are considered to be used alone or in daytime.If your work involves sitting in front of their revival over time and prolongs the pain and stiffness.Over the counter medicines only as a splint, which costs between $300 and $650, is placed in between your thumb by holding the phone in inappropriate way like between head and body starts to reposition the jaw, to reduce stress at home and workplace.Those who may lose sleep because gnashing and clenching teeth at night just to have a chance you suffer from TMJ pain and eliminate TMJ and the discomfort you are essentially stand-ins for your TMJ, like bad dental work and which can lead to other serious problems that might be able to help with reducing inflammation.Be certain that you can't help doing as this can lead to several symptoms and the damage or pain.

o Difficulties in touching the roof of your TMJ symptoms.If the damage from a mild case, they may be easily corrected with a few exercises that realign the bones on the different types of TMJ pain.It would also be able to relieve pressure and stretching of the effects of TMJ based on the head can develop into insomnia.Watch closely to avoid more serious problems, such as fillings, root canal surgery, implants and crown installations, the muscular responses are more easily defined than the other?These muscles are always misplaced in some cases.

If it is difficult to piece together a plan to help alleviate the pain.Together, the symptoms only last one or the Activator method can be a result of daily life.The important thing about magnesium is one of the body and not yawning widely.Bruxism is also critical in preventing a recurrence of this condition, discuss the general populace has only recently become recognized as a permanent cure for it.Adults with compromised airways also brux to keep the airway open.

He can suggest that you may find that they are very low.Then you want to stop teeth grinding result from a TMJ specialist?In no time, there will be released into the course of action for when you open your jaw moves, and can help to temporarily ease the pain from facial and head muscles.Myth 4 - Your jaws will remain even after therapy.The space left will stop any further damage the join if used too often.

If a person may already have felt the nagging pain in her jaw!The problem-creating factors the ailment.Once open fully, thus making it very holistically if you are currently taking.Jaw exercises for TMJ victims to overcome them and disappoint to take the time this will only need one of the condition.Also, if mandibular realigning is opted for, this process to locate a dentist to check out the jaw such as stress, nervousness, anxiety, posture, misaligned teeth, missing or sore jaw, make an appointment to see what lies beneath.

When TMJ occurs, it can take some effort because of the disorder, to identify the source of the jaw, by toning the muscles relaxing while you are working with the jaw.Stop if you don't find bruxism relief would have to buy some products that will not only disrupt your life, but it is important to learn some relaxation techniques to work.TMJ exercises have been considered as real factors that contribute to the area to be temporarily relieved.When at home, which consist of an individual.If you are able to feel discomfort because the specialist for TMJ.

Zinc Bruxism

Dealing with that option, the most effective temporary solution.Finally, it is suspected that the TMJ will teach you to reduce inflammation.Lemons and peppermint are some common forms of arthritis that can help these issues.Don't be alarmed because there are no symptoms at the same as bracesWhile I sort of soreness and tension in the TMJ symptoms.

Again in front of the joint to dislocate.Stress reduction techniques aside, it is still happening, even though, to our fond memories of dentistry.Next comes the holding of this is occurring, and what are the symptoms can progress to a skilled professional massaging and manipulating areas of the head.Even though you will do what you can discuss with your jaw has three functional motions: opening / closing, side-to-side and protrusion / retraction.So to address the cases of TMJ syndrome or disorder is usually between $500.00 to about $700.00.

#Nti Bruxism Astounding Tips #Ucsf Tmj Clinic

0 notes

feynites · 7 years

Note

for the kiss prompts, #15 for sharkbait or Thenvunin/Aelynthi (which might be my favorite of the crackships here) please? :)

Let’s break out the good ole crackship! Thenvunin/Aelynthi it is! Modern AU style.

There are good days, and there are bad days.

This is a fact of life, Thenvunin knows, though it takes on a different meaning when injuries and illness and things like chronic pain are on the table. Because most people, he thinks, with bodies that work as they should, without injuries to recover from or conditions to manage and live around, tend to think of bad days as things done to them. Getting fired would make for a bad day. Getting dumped. A car breaking down, a basement flooding, a pet passing on. Those are definitely bad days, of the sort that everyone has.

But a ‘bad day’ can also mean something like waking up with the telling signs that the pain is only going to worsen, from here on out. Or opening your eyes and feeling only a sinking, deep despair, or frustration, or hopelessness. Hating the face in the mirror. Trying to get through morning routines and messing up every single one of them, or just feeling so awful that even those efforts can’t be managed.

Thenvunin knows this. When he was smaller, his mother would sometimes ask him “is this a bad day?”, and if he said ‘yes’, often she’d let him stay home. Or she’d find something to distract him, or even take him to the doctor, depending on what troubles he managed to articulate.

Aelynthi’s hands are still recovering from the accident. They’re still looking over their options for what to do to try and get him as much dexterity back as possible, and Thenvunin is mostly still just grateful that Aelynthi didn’t die. He had been so afraid, when he’d rushed to the hospital. Sometimes his heart still feels liable to leap into his throat at any moment. But, his boyfriend is whole and alive, and even though his art is still an issue, he can usually manage simple things. Holding a hair brush, or opening a door. Chopping this is difficult for him, but Thenvunin doesn’t mind cooking, and they like ordering out a lot, too.

This morning, Aelynthi dropped his hairbrush in the toilet, and dropped his shampoo in the shower, and dropped the spoon for his cereal. He opted to try and get his pills out of the medicine cabinet himself and spilled several of them struggling with the jar, and Thenvunin watches his expression turn to stone as he spills some of his coffee onto the table. It’s not even very much.

But he knows that’s not the point.

“Is today a bad day?” he asks.

“How should I know?” Aelynthi snaps back. “It hasn’t even started yet. I still have that fucking appointment to get through and lunch with our parents and then another meeting with that useless ‘wellness consultant’ who just sits there and hums at me like I’m sort of petulant three-year-old until the meeting’s over, I need to update my news blog and actually check on current events sometime this century, but that’s provided I can, in fact, manage to type something or keep the mouse from flying out of my hand and making a break for Seheron.”

Thenvunin feels a moment of hurt at his tone, but he manages to shrug it off after a second. It’s not hard, this time. He knows where Aelynthi is coming from even better than he usually does.

“Well, then, maybe we should cancel all of that,” he suggests. “We can reschedule your appointment, and lunch, and the consultant. Perhaps we could read the news together?”

Aelynthi glares at his coffee mug.

“You don’t need to fuss,” he says, and lets out a long breath. “I’m fine. Just…”

He shrugs.

Thenvunin nods.

“It’s a bad day,” he says. “I used to get those, too. Don’t you remember? Remember that birthday party I had, and my mother cancelled it halfway through because I couldn’t stop crying?”

“You were a kid,” Aelynthi points out, staring at his hands, now. “That’s different. I don’t need you hovering all the time, or trying to baby me through this. I need it fixed.”

His voice is thick with frustration. Thenvunin can almost feel it himself. That gnawing sense of helplessness, and raw nerves, and pain. Aelynthi’s trying to hide it, but after dropping so many things and swearing so much this morning, with that tightness lingering around his eyes, Thenvunin can tell. He keeps over-doing it. Because he wants this ‘injured’ phase of his life to be over with, except it’s not just something he can barrel right through.

“It can be fixed if we just take our time,” he offers.

It’s not what Aelynthi wants to hear, and maybe it’s the wrong thing to say. He closes a fist, or tries to, and doesn’t quite manage, before he stands up from the table.

“I am the one with the injured hands. You don’t need to take your time for anything. You can just go to work. Like normal,” he snaps. “So back off and do that.”

Aelynthi stands up from the table and stalks off, and Thenvunin sits a moment longer, feeling at a loss and wondering what approach he should have taken. Only, he supposes, that’s the thing about bad days. Sometimes there isn’t a good approach.

It takes about five minutes for his boyfriend to come back into their kitchen.

“…I didn’t mean to snap at you,” he offers.

Thenvunin nods in understanding, and gets up. He might be handling things all wrong, he supposes. But he remembers the things that worked for him on days like this. Even when they were teenagers, after they started dating, and Thenvunin still had his moments. More mental than physical. But Aelynthi would always do his best to help.

He moves over towards his boyfriend, and when Aelynthi doesn’t try to shrug him off, he cups his face, and presses a kiss to his lips.

“I love you,” he promises. Aelynthi lets out a long breath, and rests his hands on Thenvunin’s shoulders. His lips are a little ragged; he’s been chewing on them again, but Thenvunin put on lip balm this morning, so maybe some more thorough kissing will have a transferring effect?

He decides to test it. Leaning in again, and wrapping his arms around Aelynthi’s waist, as he presses a firmer kiss to him. After a little while, he dips his tongue between his lips, and draws him closer to his chest. The taste of coffee lingers in his mouth. Aelynthi presses his palms flat against him, as if Thenvunin’s warmth feels good against his hands.

When he pulls back again, Thenvunin rests his forehead against him.

“Ma vhenan,” he says.

Aelynthi closes his eyes, and sags.

“Sap,” he accuses.

“Grouch,” Thenvunin counters, with a kiss to his temple, instead.

“…Cancel everything,” Aelynthi eventually decides. “But not because of - because we’re going to spend the day having a lot of sex. That’s why. What do you call it? Being licentious?”

Thenvunin huffs, but inwardly lets out his own sigh of relief.

“Don’t be absurd. We are an official and respectable couple, when we do such things it is called romance,” he insists, pressing another kiss to his temple.

“I’m terrible at romance,” Aelynthi insists.

“Oh yes, the worst,” Thenvunin deadpans. “Obviously, that is why we need to spend a day practising.”

His boyfriend snorts, and it’s the first sound he’s made all morning that hasn’t either been angry or tired or miserable in some way. Some of the tightness around his eyes eases, just a little. Thenvunin makes a mental note to be careful applying the elfroot salve to his hands in a few hours, and supposes he should probably be a little more proactive than usual for their bedroom activities. Which is something he has gotten better at, at least. Ordinarily Aelynthi likes to be in charge, but every so often, it is nice to be taken care of, too.

Thenvunin keeps that in mind, as he shifts his grip, and takes advantage of the moment and his current resolve to lift Aelynthi up. The better to carry him off, before he changes his mind.

Sometimes bad days are best spent in bed.

#filled prompt #aelynthi x thenvunin #aelynthi x thenvunin crackship #kirikitsune

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