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#i am going to a referral to have someone look at my blood work
xcziel · 2 years
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#i am going to a referral to have someone look at my blood work#they sent me a dozen pages of paperwork to fill out and want me to bring my will and power of attorney#neither of which do i actually have written out and i am not going to try to put together in just a few days?#it is a consultation#like ok if i were going into the hospital but literally he's supposed to look at my blood cell count#there's not any point where they need to see my legal paperwork?#like medical history ok i understand and i understand wanting to know my medications#but i'm not disrupting my entire life for a consult that may not even be relevant?#like my referring doctor is just guessing at things now she has no idea what's going on#gonna call them and be like sorry i'm not trying to find a lawyer and draw up paperwork in a week while also working#i don't think it's even legal to ask to see someone's will? like what the fuck?#my parent's were being treated for stuff and we had to dig the wills out of my dad's files#nether one had an official power of attorney filed i don't think or medical power of attorney#like how is that your business when i haven't even met the doctor yet and may not even want to deal with your practice?#this thing where medical practitioners just assume you're going to go along with whatever they say is really irksome#like the ct scan place they're like you might be going straight to the hospital if your doctor says so#when at no time was i ever warned or given intimations that that was a possibility?#like what if i had plans? or a pet or a kid? like you have to let people know about things ahead of time?#especially if it's not an emergency?
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jakey-beefed-it · 7 hours
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Went in for a checkup today and got basically all good news- they'll be able to re-issue all my prescriptions so I don't have to get just a month at a time anymore, my blood pressure is pretty good, and I've got a referral for my usual diabetic bloodwork.
Over the past couple years, from my peak weight, I've lost an entire shirt size, my face has gone from bright red and spherical to mostly even colored and ovoid, and I've got a lot more energy for things like walking short distances (like 2 km at the outside). So I really thought I would've lost a significant amount of weight.
But no. I've lost, maybe, 25-30 lbs, like 12 or 13 kg, when I needed to lose almost ten times that much to get down to 'healthy'. Reasoning it through, I've put on a lot of muscle specifically in my legs, having gone from totally sessile computer lump who rarely walks father than the distance to his car to mostly-sessile computer lump who lives on the 3rd floor and has to walk down to the grocery store a few times a week. And as every person who's ever worked out to lose weight has told themselves in a panic, 'muscle weighs more than fat'. Meaning it's more dense, presumably, to avoid whole the 'steel's heavier than feathers' Limmy thing.
So okay. I've gotten healthier, that's the main thing. My blood pressure is looking genuinely good, and while my blood sugar is probably too high still due to being addicted to coffee but unable to drink it without lots of creamer, on the whole, this is good news. I should be happy.
I am not happy.
I feel like a guy who's climbing a mountain through raw determination and teeth-grinding effort, thinking he's at least nearing the halfway mark, turning a bend to realize he's not even where people pitch their goddamn base camps. 'Sisyphean' springs to mind, though aside from putting some weight back on last year when I was back in the US for 6 months, I haven't actually lost much progress, at least. I've just made... so little progress compared to what I thought.
Part of the problem of course is that I'm too fat for regular scales; they're just not rated to deal with someone my size and report 'error' if I'm lucky and they don't just fuckin break. So I had no means of measuring my progress other than 'shirt fits better now' and 'can walk a few blocks without feeling like death now'. And then I got weighed properly for the first time in two years, and, oy vey.
It's not going to change anything, I'm still going to live on the third floor and need to walk around the neighborhood on a fairly regular basis, but man is it discouraging. And before anyone says it, yes, I know it's technically a significant amount of weight for a human to lose, and it's healthier to lose it more slowly over time than all in a rush, and I'm on the right track, but god. I thought I was doing better than this.
Anyhow that's why I'm in a funk tonight, how's by you kind folks?
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saintsenara · 1 month
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for 16 of the very normal asks, rather than an illicit substance, write them a prescription, suggest a course of treatment, or give them a referral
screaming! thank you very much for this cunningly-adapted question from the very normal fic writer ask game, anon!
16 [asenora's version]. write each of your fics (or a selection of them) a prescription, course of treatment, or referral to a specialist
well. let's do this for my main multi-chapter wips. plus a couple of extras. for fun.
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the plot of one year in every ten hinges on harry displaying a run of extremely reckless behaviour - which builds on symptoms evident since his childhood such as impulsivity, fidgeting, hyperfocus, difficulty concentrating on tasks he finds uninteresting, irritability, and so on.
all of which is to say... he's clearly got attention deficit hyperactivity disorder. 50mg lisdexamfetamine every morning.
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voldemort - at least as we see him in scylla and charybdis - isn't going to bother following up with a psychiatrist [which i doubt any psychiatrist considers a great loss] and so nothing is going to be done about the extremely sinister manifestations of his complex post-traumatic stress disorder [which looks, if you're so inclined, quite a lot like antisocial personality disorder... often known as sociopathy].
he might want to go and have his atrial fibrillation looked at though - even if his canonical fear of doctors isn't going to make him the easiest person to give an ecg...
[and, as always, it probably wouldn't hurt him - or snape - to go and see a priest...]
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sirius in the war of the roses has a leg injury i'm keeping obscure as a future plot-point for now. he also has a kidney infection - luckily he hasn't died in the department of mysteries so he can lie on the sofa feeling sorry for himself until his course of antibiotics is done.
lupin won't visit him once.
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the titular subluxation is probably going to need surgery, i fear - especially because rodolphus won't give up brandishing his wand at people he'd like to kill, which is aggravating the injury.
i'm not sure how such an avowed blood-supremacist would feel about muggle inventions such as x-rays or mri scans, though. he's struggling through with his sling and his pain relief potions, like thousands of stubborn idiots before him.
all percy needs is a backbone, but you can't get those on the nhs yet.
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a caesarian section from someone who actually knows what they're doing comes too late for merope in the shack at the end of the lane, but hopefully she's able to heal from her birth trauma and smack dumbledore in the face for blaming her for her own death in the afterlife.
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i am invested in the headcanon that walburga black suffered from post-natal depression - as seen in lamentation and nor all that glisters gold - and i think that antidepressants and a series of sessions with someone who [very much unlike orion] actually listens to her would work wonders.
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and poor wee tom is wracked by scarlet fever in the velveteen rabbit. this is easily treatable nowadays with antibiotics. in the 1930s, the doctor who visits the orphanage [and decides to charge a pretty penny for it] can only advise mrs cole to wait and see whether he pops his clogs in the night.
i'm not saying that - had he gone through childhood in the post-penicillin age - tom would have had less of a thing about death... but i'm also not not saying that...
[other answers from this ask game]
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Saw the dietician today
Putting my musings under a cut in case this triggers someone.
I think I mentioned before that I was hoping to see a dietician to discuss my iron deficiency and a vegetarian focused diet... today it finally happened. I was less nervous about it than I expected, but I still felt a bit on edge going in. I had kept a food journal for three days because I read online that that’s a good idea before the visit. I was worried that she would judge me for my choices.
It’s so hard to be normal about food. No matter how I eat, I always feel like it’s somehow wrong. Too much, too little, wrong foods, etc etc etc. The amounts are the hardest thing for me, because my hunger signals have mostly been destroyed during the worst ED years. I never know what’s a reasonable portion of anything. I can always eat more, until I feel sick, and that’s a lot later than most people would feel sick.
The dietician was extremely nice. I also instantly felt like she knew what she was talking about. She was sensible! She looked at my food journal and told me neutrally what all was good in it and then some ideas to make it work better from the iron standpoint - what foods to eat together, and what veggie proteins would be good to have. She gave me a few good practical things to implement right away, which was nice, because practical things are much easier to handle for me. I’m going to add a dairy product to my breakfast, and a slice of full grain bread and a small handful of nuts to my snack. I will start this weekend and see how I go.
One thing that surprised me was that she said I may be eating too little. I didn’t really know how to react to that... I was expecting that she would say my portion sizes are too big. Apparently the portions are mostly OK but I should add some elements to get more energy (like the nuts and such). She was not crazy about the intermittent fasting, not in the long term at least, but she didn’t tell me I need to stop. I wouldn’t stop anyway, because it works so well for me.
All in all, I feel very positive about the appointment. I feel validated, if that makes sense. I now had an actual professional tell me that my diet is mostly good. I don’t need to read online about different so called experts preaching about their chosen “right diet”. This was a safe way for me to figure things out. She also said that she will put in her statement that she recommends a second visit, so I will have to ask my doctor if I could get another referral. I’ll ask him when he calls me about the blood test results.
I don’t know why I am writing all this... maybe I just needed to air my head out a bit. These are big things for me, even if it’s all now somewhat shadowed by the apartment hunting. I’m actually going to see an apartment on Monday - the location is perfect, but the pics in the listing and the general description are lacking. I will see how it is in person. It would be amazing if it worked out... but also, I do have a lot of time left so it’s not a disaster if it doesn’t. It’s just in my nature to be impatient - now that I know I need to move, I want it to happen as soon as humanly possible. Perhaps not at Christmas though. I have a dear friend coming over on Boxing Day to spend two days here - I hope I won’t be buried in moving boxes at that time...
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a-lil-strawberry · 1 year
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I'm feeling very frustrated about my doctor's appointment that was today. I'm very frustrated with my doctor. I feel like she doesn't fully listen to me. I just present an issue to her and she instantly comes up with something random to treat it that makes no sense to me, but I do it anyway because idk how to stand up for myself in appointments, and then whatever it was doesn't work and we're back to square one. I'm very frustrated. I just wanted to come in today and do some testing to figure out what's going on instead of just trying some random solution again that I know isn't going to work. Like it's a skin issue specifically, can't I get a referral to a dermatologist and actually find out what's wrong?? I'm so frustrated. I actually asked to see someone else other than her but they just called to set me up with her anyways. I need to speak up more but it's also so frustrating that I should have to. I asked for someone else in the first place bc I knew it would go like this. I am so frustrated and sad about this. Plus I wanted her to look at a mole that concerned me and she wouldn't look at it because it had a scab and she said "if we take the scab off it will just look bloody and I won't be able to see it. Just keep an eye on it" I DID KEEP AN EYE ON IT THAT'S WHY I NEED YOU TOO LOOK AT IT NOW, PLUS BLOOD?? REALLY??? SHOULDN'T IT BE PRETTY EASY FOR YOU AS A DOCTOR TO STOP THE BLEEDING OF A LITTLE MOLE?? PLUS WHEN I GOT HOME THE SCAB FELL OFF AND THERE WASN'T A SINGLE DROP OF BLOOD IT WAS 100% DRY
That's it I'm calling in the morning and requesting an appointment with my other doctor and I want this lady to not be my primary care provider anymore. I want to cry about this.
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jp-owl · 2 years
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a little more real every day
I’m now almost a real person in norway. the steps to getting into the system are numerous and never posted in order anywhere that i’ve seen.
your employer can get you a tax ID before you get there, but after you’re granted a temporary residence paper. then you need a D-number. to get your ID ordered and your official D-number, you have to go to a police station in Norway and hopefully skip all the steps that you did in your not-in-Norway interview. Just bring your passport and try not to look too dead for your new ID photo. Your d-number is NOT written anywhere. It’s like your social security number. Don’t give it to anyone... except every institution that demands it from here on out. Once you have a D-Number And a Tax ID, you can get a bank account. You will see this “Login with Bank ID” everywhere. You cannot use it yet. With your new shiny bank account, go back to the bank IRL and ask for a Bank ID.  They’ll set you up once they look at your passport and make sure all the previous info is real. Now and only now can you  do shit the easy way. Like use Norwegian venmo (VIPPS), log into the healthcare system, log into the mental healthcare system, log into your workstation (unless you have creative workarounds and savvy tech helpers), etc. it took 9 months to get a d-number, 5 days for a tax ID (once i knew i needed one), 15 minutes each at the bank to get a bank acct, code brick, and bank ID.
there a tonne of steps to actually get to the job that brought you on this journey, but i’ll post those on demand.
so now, now I can get real mental healthcare. which you need a GP for a referral. but no GPs in my city are taking new patients. so the Emergency room is my doctor until I can get a GP. But they can refer me to a mental health person just like the GP and dispense a fair amount of meds/renew prescriptions. After spending $200, my deductible will be paid and my healthcare will be covered gratis.
i need this mental healthcare. i still feel like my soul got ripped out. i am so grateful that it’s gonna get easier (physically... i still mostly want the light at the end of the tunnel to be a train). but man this process is not a great one for someone who’s already had a constant anxiety episode for like four months. now, NOW, i can get little bits of relief with meds. but the work. oh the work is coming.
the times i feel okay are when I’m actually training, teaching (some exceptions), sleeping, or running. it’s weird to think that my mental health got so bad that i trained up to a half marathon. some people harm themselves with razors. i do it in running shoes. i have not let my bad brains lead me down pathways of planning, rest assured. my cognitive load is just too damn high and i am overwhelmed all the time the only thing makes it all STOP is running until I can taste blood or juggling or doing something absorbing that i can’t do or think anything else.
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art-babbu · 10 months
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Let me complain real quick (spoiler: this is not quick to explain)
A bit of TMI: as a trans man, I hadn’t had a period in like nearly 3 years while on T but in February it suddenly came back for a full on 7 days of cramps and bleeding and hell. The issue is: I have been consistent in my shots. I haven’t missed a single one since starting and therefore my period returning had no explanation. I didn’t have a period again after that, except after my period ended I never stopped blood spotting. This went on until I got a gynecologist appt in May.
Had a Pap smear in like March I think and everything seemed fine but the blood spotting still went on so I went to the gynecologist in May and tbh, I was gonna go to the gynecologist to discuss sterilization anyways so I was open to any options.
After seeing this doctor, we decided a hysterectomy (leaving my ovaries and cervix alone, just taking out the uterus and the fallopian tubes to eliminate the bleeding issue while also sterilizing me as a win-win) was the best course of action.
SO, made the appt for the surgery, dealt with insurance going back and forth a bit because the doctors office kept trying to bill me a surgery deposit when insurance is like no man you pay the day of to the facility, whatever.
The day before surgery rolls around and I get blood work done real fast cause they told me Friday I needed it and the surgery was set for June 11th. Monday I get the blood work done and get home and get a call from them, they inform me I suddenly can’t do the surgery with them. I’m like why??? They say well your CPT code changed to reflect the actual type of hysterectomy you’ll get and turns out that code with your insurance makes it so an ambulatory surgical center won’t get reimbursed. So I couldn’t get it done there. They tell me they can do it at their main OR hospital in their building in July instead and I was like sure???
But then I called my insurance to double check if the hospital they were gonna move my appt to was in-network and they tell me no??? So I call them back and am like hey turns out I can’t go through with this surgery with you guys because I personally need it all to be in-network in order to afford this, so I’ll have to find a new doctor to do this in an in-network hospital.
So I was back at square one, still blood spotting every single day, but now I was calling my insurance and providers every single day since the 11th. Either I’m told info that doesn’t get me anywhere, or offices simply do not wish to speak to me if I don’t have a referral, won’t answer my questions, won’t give me information, at one point my insurance told me the name of a doctor that works in-network at an in-network hospital but I tried looking them up and this doctor literally does not EXIST…
So yesterday I was so fed up with calling and trying to get help and get the healthcare I have been TRYING TO GET, I ended up crying while speaking with my insurance agent and they started calling people for me because they have more authority to get information and verify it. Still didn’t get me anywhere cause by the time I found someone to help me it was already closing time for most doctor office number lines.
So today I call and go through it all again with a new insurance agent, and we get to a point where she is looking at hospitals and she mentions one is in-network and I’m like hold on this is the hospital that I was told was out of network and caused me to go through all of this, it isn’t in-network.
The lady goes “I’m looking at it on my screen right now, and it is in fact in-network.” And I was ready to scream.
She explained that they must have renewed smth with the insurance to get back in network, and when I called it wasn’t renewed yet therefore it appeared out of network. Regardless, that hospital is in-network.
Which means….I can go back to my original gynecologist and just schedule the surgery with her. I went a full 360 degrees of insurance/medical search trauma just to end up right back where I was. Theoretically, I could have not originally checked if that hospital was in-network and would most likely have just been fine, but now I am calling my original gynecologist office to please schedule that surgery we cancelled a week ago. I will hear back tomorrow hopefully.
God I hope I hear back tomorrow because I didn’t just spend every waking moment outside of summer class calling insurance and doctors just to be ghosted by them because I kept calling and doing all this bullshit. I don’t even care anymore as long as they just do this fucking surgery as quick as possible and it doesn’t cost me an arm and a leg.
Only reason I have the copay money for the surgery is because a very generous friend paid it in exchange for a very in-depth commission I’ll do for her, because god forbid people actually request commissions when they’re finally opened when they were asking if I do commissions for years beforehand.
I am going to eat drywall and then walk into the ocean over everything I put myself through just to end up back in the original spot but able to do The Thing now.
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Just let me remember
In the dream, I was at the doctors clinic in the waiting area and sitting on a seat and I was waiting awhile for my turn with a doctor. Some people appeared that did business with CWH, we regularly get deliveries from them and they had our invoices for the latest delivery on their person. Maybe they forgot to drop them off. It was two envelopes. I thank them and said I would drop it off at work tomorrow but they said you’d better do it today because then they can’t use the stock that got delivered. I agree to this because I felt for the situation. Even though I hadn’t had my appt with the doctor yet, I had to leave and go to TAFE to attend my pruning class
When I got there and entered the classroom, I chose a seat and sat down. I was purposely not thinking about AJ but also by virtue of that, I kind of was. I kept myself from looking around for him. And then I think I felt him come into the classroom and MH who was sitting near me even said something to mention his arrival like, look its annoying big head (as a joke). I looked in his direction and sure enough it was his back, his tell-tale hair backpack. I couldn’t see his face. I never saw it. We didn't really say a proper hello to each other, barely acknowledging each other and it felt quite awkward. We were shielding our emotions from each other and hiding something, not being open. Thing is, I could feel that even though I was trying to not let him affect me, he was. This coldness I felt was just a mask, the reality was that I missed him. I was so glad he turned up to class. I wanted to fall back together with him again and have fun and laugh like we always do, but we were holding back. He didn’t immediately sit next to me, I think he was talking to Sakura and although he did end up sitting near me, it wasn’t near enough. Then I had to go because I had rescheduled my doctor's appointment for around 3:30. I didn't want to leave I wanted to be there with AJ and potentially rekindle our friendship to what it used to be.
At the doctors, I was waiting again in some other side room that was out of view. After while I started to think that I had been forgotten about, so I moved into the waiting area where all the receptionists for the different doctors could see me and remember me. It was like an open floor plan with receptionist desks for each doctor as well as a lot of other office clutter. It was cramped. Someone said hi Katherine so they knew I was waiting. While I am sitting there, I feel like I don’t really know why I am at the doctors at all. On some level I know I am just here to distract myself and waste time and make up a complaint about my body when really I have no complaints. After awhile of scrambling in my mind with what to bring up, I decide that I will bring up my iron levels since I have been anaemic in the past and are probably still am even though I know exactly how to treat myself. I will tell the doctor that I want to have a blood test (even though I don’t actually want to) and I will say that I have been feeling weak and dizzy. Deep down, I know that I won’t follow up with a review appointment after this one, at all. I will just take the blood test referral home with me and not do anything about it. I am getting impatient now because I have been waiting awhile but the other reason is that I am hoping there is a chance that if this appointment goes by fast enough, I can make it back to class before it finishes and spend a little more time with AJ.
When I'm finally in front of the doctor, there is some kind of strange situation with a lawyer sitting on their mini desk right beside the doctor's desk. It looks like a set up for a child. Before the doctor even says anything, the lawyer is introducing herself and makes a show of saying a bunch of things to do with liability. She had me watch a video about disclaimers but before the lawyer played it, she said we like to play this video (because it's easier), but if you prefer to read it on paper then just say so. I was so engrossed in the video, and it was weird video indeed. There was so much green in it, I see the camera pan and focus onto some grass or something, like it’s a horticulture video. It doesn't feel like it's about what the lady said it was about, I forget that I am even watching anything. I zone out while watching it. I am not there. The NPCs seemed quite chipper
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cuttoothed · 3 years
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For the second day of @jonmartinweek, mostly for the prompt "injury", though also a little bit "love confession" (by omission).
Set directly after episode 92. Content warnings for mild descriptions of Jon’s canonical injuries (blood, burns).
*
Things are...tense, when they go back down to the Archives. Actually, “tense” is probably an understatement, after finding out that Elias murdered not only Gertrude Robinson, but also the unknown man in Document Storage—who as it turned out was none other than Juergen bloody Leitner.
A lot to take on board, all in all.
Basira seems to have accepted her new employment status with eerie calm, and starts setting up at Sasha’s old desk (oh god, Sasha’s dead, has been for months), fetching notebooks and folders from the stationery cupboard and arranging pens and highlighters in a desk tidy. Daisy is nowhere to be seen—thankfully, Martin thinks, because she was even scarier than usual in Elias’ office. Melanie storms off into the stacks and there are sounds of shouting and things hitting the floor, which Martin is in no hurry to investigate. Tim sits at his desk with his feet propped up for about five minutes, then stands up and says: “Fuck this, I’m off to the pub.” He doesn’t invite anyone else to go with him, and Martin thinks their presence probably wouldn’t be welcome.
Jon arrives in about half an hour later, smelling of fresh cigarette smoke. Normally Martin would disapprove, but the way things are right now he’s tempted to take up a few bad habits himself. Jon looks...exhausted, defeated, his shoulders slumped wearily. His clothes are smudged with dirt, and there’s drying blood crusted around the injury on his neck; the bandages on his hand are starting to slip, revealing the angry, raw burns beneath.
Martin’s not sure he’s ever been so happy to see someone in his life.
Jon gives him a small, tired smile as he passes, then heads into his office and shuts the door. Martin knows that no sane person would try to go straight back to work looking like they’d just been through a war zone and still with an open wound; he is also aware that Jonathan Sims is the sort of person to do precisely that. He hesitates for a few moments, then makes a decision.
He fetches the first aid kit from the break room, and goes and knocks on Jon’s door. It’s a firm knock, a knock that he hopes says “I’m coming in whether you like it or not”, because it’s not beyond Jon to try to avoid them all for an extended period.
“Come in,” Jon calls, and even his voice sounds exhausted. When he sees Martin enter the room, his expression softens in a way that’s difficult to parse. Is he just relieved that it isn’t one of the others? Or is he actually pleased that it’s Martin?
It’s been two months since Jon went into hiding while suspected of murder, and the last time Martin saw him he had been quite sure Jon was planning to—to hurt himself, somehow. Before that, though, there had been a time when they were...well, close, in a way. Jon had let his guard down around Martin, in the midst of being so suspicious and afraid. He had trusted Martin, when he didn’t trust anyone else, had eaten lunch with him and talked about boring, ordinary things, the tight set of his shoulders relaxing just a little. He had even laughed, sometimes. It had been, despite everything, one of the happier times in Martin’s life, and if that’s not pathetic he doesn’t know what is.
“Hi, Jon,” he says.
“Martin,” says Jon, his tone soft. “It’s so—ahh, how are you?”
“How am I? You’re the one with a bloody great gash in your neck and looking like you put your hand in a fire.” Martin brandishes the first aid kit. “You really should go to the hospital, but I know it would be a waste of my time suggesting it.”
“Thank you for bringing that,” Jon says. “I appreciate it. You can just leave it on the desk.”
“Nope,” Martin tells him cheerily, setting the kit down and opening it. “I know you, Jon. If I leave it with you it’ll still be sitting here untouched tomorrow. Plus, I got my first aid certification when I was working in the library. It’s probably expired now, but I think it still counts.”
Jon looks as if he’s about to protest, but then he huffs a breath that might be a laugh, and nods in concession.
“All right then,” he says.
Martin snaps on a pair of disposable gloves and directs Jon to sit on the desk and undo the top two buttons on his shirt, so Martin can examine the wound on his neck. It’s shallow, fortunately, and the bleeding seems to have already stopped. Martin cleans away the crusted blood as gently as he can, though Jon still winces a few times.
“What happened?” Martin asks, as he smears on antibiotic cream.
“Daisy. She, ah, she decided that I was dangerous. Needed to be dealt with. Fortunately Basira was able to convince her otherwise.”
“Bloody hell,” Martin mutters. He’s not sure why he’s surprised; he’s always felt afraid around Daisy, like a rabbit being in the same room with a fox. But he just sort of assumed it was typical Martin fear of, well, everything. He never thought Daisy would actually hurt any of them. He applies a bandage carefully over the wound, and then turns his attention to Jon’s hand. Unwrapping the bandages reveals the red, blistered mess beneath, and Martin hisses in sympathy.
“Please tell me you went to the hospital for this.”
“I went to a walk-in clinic,” Jon says. “They cleaned it up, gave me some antibiotics and painkillers. They, uh, they did recommend I see my GP for follow up monitoring, and that I should get a referral to a physiotherapist, but, well, it’s been a busy few days.”
“Jon,” Martin sighs, exasperated, and Jon smiles a bit shakily.
“I know,” he says. “I will go to a GP, I promise. It’s just a bit tricky when you’re wanted for murder. Anyway, it seems to be healing rather well, all things considered.”
Martin considers whether to apply antibiotic cream, but the skin doesn’t seem to be broken, and he knows it’s best not to touch the area more than needed. Instead, he rewraps it with clean, dry bandages, being sure to keep them loose.
“How did this happen?” he asks, to distract himself from the fact that he is, technically, holding Jon’s hand. Jon gives a self-deprecating laugh.
“I, uh, I was trying to get information from a devotee of the Lightless Flame. This was her price.”
“The Lightless Flame? That cult—from the statements?”
“The same. As it turns out, a—a lot of things from the statements are real. Unpleasantly so.”
“I—yeah, I sort of figured that out when Tim and I got trapped in these weird corridors for days by that Michael...thing.”
Jon’s face blanches, his brows furrowing.
“You—god, Martin, I didn’t know. Are you—I mean, you’re okay, obviously, but— Have you seen Michael since?”
“No, and I hope I don’t.” Martin feels faintly nauseous at the memory. He doesn’t realize his hands are trembling slightly until the fingers of Jon’s hand, the unburned one, touch his wrist.
“I’m so sorry, Martin,” he says. “When I realized a-about Sasha, about that thing, I hoped I could take care of it myself, spare you and Tim. I never wanted to drag you into all this.”
“I don’t think there’s much avoiding it,” Martin mutters miserably. “And you didn’t seem to mind dragging Melanie into it, while you were on the lam.”
“I shouldn’t have asked her for help either. It wasn’t fair to put any of you in the position of aiding a suspected murderer.”
“I never believed you did it,” Martin tells him fiercely. “It just would have been nice to know you were okay, you know?”
“I know, and I’m sorry. I—I wanted to contact you, but it seemed too risky. I knew the police would be watching you, since we’re friends. Or—or at least friendly.”
Everyone I’ve talked to says you and him were close. Martin had been ridiculously pleased by the accusation at the time, and he feels the same now, with Jon’s injured hand cradled in both of his. Jon trusts Martin with his wounds, his vulnerability. Jon wanted to contact him; Jon thinks they’re friends.
“I—” Martin starts to say, and he doesn’t know if his next words will be I missed you or I worry about you or some humiliating romantic confession blurted out and impossible to take back. He draws a deep breath, and instead says: “I’m glad you’re back, and that you’re okay. I don’t have that many friends, I can’t afford to lose one.”
He says it like a joke, and mercifully, Jon takes it as one, and gives a relieved laugh. Martin realizes he’s long since finished bandaging the burn and is now just sort of...holding Jon’s hand; he releases it, reluctantly, and Jon smiles, lifting his other hand to touch the bandage on his throat.
“Thank you, Martin,” he says, hopping down from the desk. “I appreciate it, really.”
“As a token of your appreciation, you can go ahead and make a doctor’s appointment for that hand,” says Martin firmly, closing up the first aid kit.
“I will,” Jon says solemnly, and Martin believes him, but he’s also going to check in and remind him at the end of the day because Jon has a tendency to forget about trivial things like his own wellbeing. It’s just who he is, and Martin’s made his peace with it, like he’s made his peace with being utterly, hopelessly gone for Jonathan Sims.
“I was going to make some tea, if you fancy,” he says as he opens the door. “You look like you could use a cup.”
“Oh, yes, that would be lovely, thank you. Oh, and Martin?”
“Yeah?”
“I’m glad I’m back as well. I—” Jon hesitates a moment, then says: “I missed your tea.”
It’s not much of a declaration, but Martin understands what Jon means by it; for the two of them, it means a lot.
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Did you hear about the Fraktz haunting in New South Wales (1995ish)?
It has gotten a little folklore-y and probably sensationalised over the years, but the basic premise is that Dina and Hans Fraktz were one of those overly helpful religious types, and were raising their three kids (Curtis - 11, Angie -8/9?, Louisa-May - 3) just about the same.
They lived in Albury, NSW which is in Australia in a dept of housing place, not much room but they made do and were always grateful to god about it. Enough that, as the story goes, it catches the attention of some demonic entities.
Belphorn bets that Lucifer can't corrupt the whole family in under a year, and of course the overachiever that he is, the head of hell says 'Hold my beer mate' and goes to work.
It starts as every horror movie starts, weird noises, bad dreams, smell of decay, something in the corner of their eye, etc. Louisa-May is the most sensitive, and of course, gets taken first after promising something to her 'imaginary friend'.
The paediatrician isn't sure what to do when her frantic parents present at the clinic with a toddler that keeps cackling maniacally and contorting in ways bodies shouldn't. They rationalise it's probably ehhlers-danlos sydrome or a varient, and this needs further observation. A referral for a specialist is provided, and that's that apparently.
Of course with a 'sick' child, the stress and tension in the house is high. Dina and Hanz are having whispered not-arguments so the kids won't hear, and Hanz pretends to ignore that Dina's gone back to smoking ten a day to keep herself calm. In the same way she turns a blind eye to his fermented grape juice dinners... and breakfasts.
Curtis shows the stress by acting out at school, getting detentions frequently and just skirting away from suspension by technicality alone. His friends distance themselves, he has no energy for footy anymore, and he can barely concentrate because something is always just behind him. He screams himself awake, begging it to just leave him alone, he'd do anything to just be left alone.
"Anything?" the shadow asks one night in late June, detaching from the wall. There's a few variations of the pact that the demon makes, but they all boil down to 'you can't be scared of us, if you're one of us' and Curtis is so tired he accepts.
The next morning Curtis is muttering in ancient sumerian under his breath, with bloodshot eyes and a strange echo to his voice.
Hanz speaks with their local minister about an exorcism, or some sort of spiritual guidance. A bake-sale to assist in medical care is organised, and a prayer night held for the two Fraktz children.
Nothing seems to change. Dina can only turn the crucifixes in the house rightside up so many time a day, and starts to just walk past them now. Who cares anymore?
Morning and Evening prayers go by the wayside, and even saying Grace falls out of fashion because its horrifying to hear it babbled back in dead languages, or one of your children shrieking at the holy words burning her ears...
By September, Dina's exhausted. Something's scurrying in the walls at night and she knows its not rats, it can't be. She checks on Curtis and Louisa-May to make sure it's not either of them climbing the walls again.
Hanz won't get up anymore, so she tends to wander the house with a flashlight trying to find the noise, and ignoring the lingering sensation of something breathing on her neck. She ignores it, because their minister said acknowledgement gives it power.
Something has written an ominous message across her kitchen wall in what is either blood or thick jelly, and that's the straw that breaks the camel's back. Dina bursts into tears and starts yelling for whatever was doing this to get the FUCK out of HER HOUsE because she JUST WASHED THAT WALL and WHO DID IT THINK IT WAS to go doing something like that?
Something knocks a few jars over, and four slash marks appear on the bench. Dina's scared but still angry, she screams at the air, turning in every direction. "What do you want? Tell me, and I'll do it, just leave us alone!"
By the time Hanz stumbled into the kitchen, swaying and dizzy from his skinfull, Dina wasn't there anymore. Well, at least, her body was.
Hanz would tell his neighbour, the minister and his church group about finding Dina walking on the ceiling and singing an old lullaby to the sleeping Louisa-May in her arms. She reportedly screams at him when he asks what in god's name is she doing?
Terrified, Angie asks her father if she can go stay with her aunty (Meryl) in Woodonga, just a town over. Hanz readily agrees, and drives her there himself, before again seeking assistance from the church.
The minister, clearly not ever having been prepared for such things when he'd accepted the small town position, was at a loss and offered platitudes. Using comparisons to Job to try and help Hanz feel that his faith was merely being tested, and not that God had abandoned him...
For the first time in his life, Hanz began to doubt in the power of the Lord. He left a few journal entries around October 1995, many of which contained the phrases "I feel like I'm going mad" and "I know I'm not crazy, but it feels like I am", as things spiralled out of control.
The main barrier to accessing help, is that Dina, Curtis and Louisa-May were perfectly capacble of acting like themselves when people came around. So Hanz came off as having some sort of mental health episode, and the minute they left, things deteriorated again.
At his wit's end, Hanz locked himself in his bedroom and begged the lord for help. Sobbing and pleading, clenching his hands so tightly in place that his nails pierced the soft flesh between his fingers and the crucifix imprinted on his palms.
It was not entirely clear what happened after this point, as the tales all like to make interesting claims but the key point is there were no actual witnesses, except Hanz and the already 'taken'. But by the next morning Hanz had been subsumbed by the entity as well.
Despite being with her aunty, Angie continued to have nightmares that she would shriek herself awake from, well into late November. Her aunt and two adult cousins would take turns reading to her, distracting her, and reminding Angie about Christmas coming up soon so she had something to look forwards to.
They also took turns sleeping on the floor by her little bed in the guest room, so that there was always someone to point out there was 'nothing there and nothing can hurt you' when Angie woke up distressed. [Her older cousin Deliah has a book about the ordeal, and I think it might be in e-reader, but you can google it if you want.]
So Christmas rolls around, and excitement for Santa overlays even the deepest fear of shadows, which seems to breathe some life back into little Angie. Her aunt is relieved, but is still fighting to get some in-home supports for her brother, his wife and their other two children; she knows something's wrong, but suspects it might be something in the old council pipes...
Angie struggles to keep her eyes open as the countdown begins, and just managed a solitary enthused 'tooooooooot' from her party blower before falling asleep on the couch against her other cousin, Javin. The adults laugh uproariously and take photos, for when she's old enough to be embarrassed by such things.
Oddly enough, the new year seems to have snapped the rest of the family out of their funk, as if 1996 has a power all of its own. Things seem to slip back into place as if people had not been puppeted by a demonic entity for nearly 12 months...
Down in hell Lucifer was fuming and Belphorn was far too smug.
But what could be said about the bet? Lucifer was bound to lose, because he didn't possess all the Fraktz.
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Hi! I've had what are apparently neurological issues my whole life and am now as an adult looking into them. I went to a neurologist for the first time ever a couple weeks ago. The thing is that he brought up multiple options that after about 5 minutes of considering I decided couldn't possibly match my experience. I don't know if he suggested them because an answer wasn't immediately obvious and they're some of the most common or if I didn't explain myself well (I'm both autistic and tend to play down my issues due to trauma), or if he didn't listen. He did believe I have something, so that's a good sign. But in the course of researching his suggestions I discovered, for the first time ever, something that's really rare but could explain my problems exactly. I want to go back and bring it up and ask about how getting tested would work. But I don't know how to be knowledgeable and convincing in a way that seems both like I did my homework but am not too pushy. I'm scared he won't initially believe me and I'm not sure how to be appropriately assertive. Do you have advice for bringing it up and being listened to? Thank you if you answer!
This is one of those things that no matter what you do, the ultimate result is on the doctor. So if you don't get taken seriously, it's not necessarily that you did anything wrong.
There are things I've learned that help my case though. Asking questions is a really useful and non-(ego)threatening method. So not what I did when I first got sick:
"Hi, I did my research and I think I have x and here are the 50 reasons I think so and some papers I printed out. Please test me for it."
Clinicians are human and have limited processing power. The above scenario is A LOT to take in! If the doctor has an ego and finds the subject out of their comfort zone, they might act dismissively or even aggressively. If the ego problem is bad enough, they may react that way just because someone had the nerve to offer an idea they hadn't thought of. Also, asking for tests is a delicate thing. Some doctors find it pushy, some are fine with it, some encourage it. You kind of have to feel them out.
Here's an option I like to use now:
"What do you think of x as a possibility?"
This is less threatening to (dumb) power dynamics so ego driven doctors are less threatened. It sounds less pushy and much more reasonable. You are showing you are open to possibilities and full of curiosity. Idk, it seems to work better. A good doctor will ask you why you think you might have "x" and then the discussion begins. And in that case you are giving your supporting information after being asked for it. So again, keeping the (dumb) power dynamics unthreatened. A good doctor will also admit when they don't know something. That's actually an ok outcome. Ideally, you'll get concrete answers after thorough testing. But if you have a doctor who is willing to work with you, that's a good first step and a decent outcome for that appointment.
Also, if the doctor doesn't get there on their own, you can follow up by asking, "what are the next steps?" This is my favorite because it's a direct question that asks for concrete answers. It makes it less likely that you'll leave the appointment with no progress or plan.
It sounds like you have a good start with your neuro. He's not dismissive and believes there is something wrong. If he can't help you, he might know someone who can. And if he can't help ou and doesn't offer referral, it may be time to try a new neuro. One way to find a good doc is to see who fellow patients recommend. Lots of illness based support and advocacy groups have physician recommendation pages on their website.
Unfortunately even when everyone involved is doing great, the path to diagnosis and treatment can take a long time. I'm working with three AMAZING doctors right now figuring out some dodgy blood test results and we are a year in with no answer yet.
Hopefully your next appointment will be more fruitful and you'll get the answers you are seeking!
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m34gs · 3 years
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For that ship ask: 6, 7, and 9 for Ikkaku/Yumichika.
Thanks for the ask friend! (regarding this post) hehehe, I am so excited to answer these questions. I love Ikkaku and Yumichika as a ship, and these are some great ideas!
6. Single parent AU: Which one is the single parent? (Alt. if they’re both single parents: Which one is open to starting a new relationship from the start? Which one is never planning on finding love again… Until they meet the other and are instantly smitten?)
So, while I think that they both would be great parents, I think Ikkaku would be the one to be the single parent. Maybe he messed around a bit without thinking everything through and had a surprise baby with someone who wasn't interested in staying to raise the child, or maybe tragedy struck and his first love was taken away too soon. Either way, he now has this adorable little child, completely dependent on him. And damn it, he is gonna be the best dad. His kid is never going to want for anything, he will teach them how to fight, how to play, how to do everything they need. He isn't as good at some things, like cooking (I like to think he gets impatient and either undercooks things or turns the heat too high and burns everything), but he makes sure his kid gets the four food groups at every meal and snacks in between, even if it's pre-cooked or take out. (Which, in my opinion, there isn't anything wrong with those, and his kid is happy so Ikkaku is happy).
Ikkaku spends so much time doting on his kid that his friends worry about him, saying he still needs to take breaks and time for himself. Ikkaku is nervous at first (he would die before admitting it but he is worried about his kiddo), but he reluctantly lets someone (probably Orihime, who he is friends with through Ichigo) baby sit his little one and goes out to a pub with some friends to just have fun and relax. And damn if he doesn't see the most beautiful man he's ever met serving drinks and food to customers there. He's literally tonguetied. This man is so pretty, and he knows it. Lucky for Ikkaku, he is also a catch, and this man is bold. He slips Ikkaku a paper with his drink, and it has a name and a phone number on it.
They meet up a few times for coffee. Orihime is steadily becoming Ikkaku's number one baby sitter. (He trusted Renji once. Never again.) And Ikkaku is really into this guy. He doesn't have to pretend to be all tough, the guy, Yumichika, he gets it. He admires his strength, but also calls him beautiful and that is something Ikkaku is not used to hearing, but it definitely makes him blush. And he really enjoys his outings with Yumichika.
Then, comes the moment of truth. Ikkaku was open from the beginning about having a kid. He had to be. His kid is his world and he would never want to be with anyone who wouldn't love his child like their own. So Yumichika has been asking to meet his kid, and Ikkaku finally arranges it. He is more nervous than he was for the first date. He wants this to work so badly, but what if his baby is having an off day and acts shy or scared or throws a tantrum and scares Yumichika off? Or what if Yumichika is uncomfortable around children?
But then, Yumichika arrives. And Ikkaku introduces him to the kid. They stare at each other for a long time. Then Yumichika kneels down and offers a smile to the little one. The kid looks up at Ikkaku, who prompts him forward with a nod. So Ikkaku's child walks up to Yumichika and says, as is typical of children, the first thing on their mind, which is "can I wear colours on my face like you do?" (referring to his eye shadow and make up, which is of course flawless) and Yumichika is all for this. hell yeah. He says 'of course' and they spend the day doing make overs together, while Ikkaku watches them with a soft adoring expression he never shows for anyone else.
7. Doctor AU: Which one is the longsuffering doctor? Which one is the patient?
Yumichika is the doctor. He most definitely is. I think, he'd be a surgeon, maybe plastics? And Ikkaku is the patient. Ikkaku came into ER, severe work-related injury, needing immediate treatment, blood transfusion, and prophylactic antibiotics, the whole works. He got his leg crushed under machinery, there's blood and bone everywhere.
Once they get him stabilized, admitted, treated, and he's starting to heal, plastics is consulted. The top Plastic Surgeon, Yumichika Ayasegawa, is sent a referral, and he, of course, accepts, because he never turns down a challenge.
He finds Ikkaku attractive at first sight, but Yumichika is a professional. He would never date a patient. Instead, he focuses on his work, and does an amazing job. After about a year, Ikkaku's leg looks awesome and he's ready to be discharged from Yumichika's client list. Sure, there's scars (there always will be from an injury like that) but Ikkaku is highly impressed with Dr. Ayasegawa's work. And also his face.
Yumichika still wants to be careful. He may be in the same city, but he remains aloof and keeps his distance for a couple months afterward, but he can't help but flirt when he finally does see Ikkaku again, in the grocery aisle. Ikkaku is totally into this (the doctor has the most beautiful face he's ever seen!) and he ends up with Yumichika's number by the end of it.
9. Pirate AU: Who is the pirate? Who is the member of the royal family who did not sign up for this?
OOOOOH THIS! PIRATES! YES! HELL YES! THANK YOU FOR ASKING THIS ONE I LOVE PIRATES!!!
OK, ok, so. I have IDEAS. First, Ikkaku is totally the prince, first Prince of the kingdom and set to inherit the throne. Meanwhile. MEANWHILE. Yumichika is the King of Pirates. Yes. Yes. He is the most powerful pirate on the sees, with a notorious reputation for targeting any rich merchant or nobility he comes across on the seas. Ikkaku at first thinks this man must be fearsome and terrifying to look at, and he's a plague to the people. It makes his blood boil (and his heart race at the promise of a thrilling fight). He sets out on an expedition to hunt down this pirate king! But. When he finds the Pirate King, he is surprised (and entranced) by his beauty. And also a little confused, because even though Yumichika is beautiful and the Pirate King and says he loves to collect beautiful things, he doesn't seem to have retained a single piece of the wealth he stole. It's confusing, until Yumichika captures Ikkaku and brings him back to Yumichika's home island, where the wealth has been split among the people and shared. They are an island under the current king's rule, and they are heavily taxed to the point it is difficult to make any profit or survive. Yumichika shares all his spoils with them.
Ikkaku confronts him, demands to know why? Why, if Yumichika values beautiful things, is he giving wealth away? It doesn't make sense. Is this a set up to trap Ikkaku and manipulate him? And Yumichika just shakes his head at him and gestures to the people. "They're smiling," he says. "Is there anything more beautiful than a genuine human smile?" And that is when Ikkaku falls head over heels for this beautiful Pirate King.
Whew! This is a bit lengthy, but there you have it! I hope you enjoyed my answers and thoughts to those questions!! Feel free to ask more if you like, friend!
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jedimasterkelly · 3 years
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Shit happens when you're a woman. A lot of shit. Bad shit. And a lot of the time, you will run into doctors who do not listen to you. Will not care about you, and will not take you seriously.
This story is about the Great Cancer Scare of 2020.
I was 49, and 3 yrs post menopause. I was pleased about that, as it means no more period ever. I could deal with the occasional hot flashes, and the snapping of necks of anyone who dared bother me. Then in May of 2020, after the pandemic fully hit and the University I work at closed and sent all of us to work from home, I got very sick. Not from Covid, thankfully, but something else. I had started bleeding, and it wasn't menstrual blood. It was bright red and HEAVY. I was filling post-natal pads within 2 hours. I called the Women's Clinic where my OB-GYN lived. They couldn't see me until July. WTF! I called my GP, who got me in on an emergency basis, I mean, 3 yrs post-menopausal women don't just spring a leak, you know? My ovarian function had been almost nil for 3 years. He called my OB-GYN and demanded I get seen right away. They made an appointment for 2 weeks later. Keep reading, because it's quite a ride!
Seriously! 2 weeks later!
In the meantime, my GP discovered my thyroid was tanked out, so I was put on Levothyroxine 25mcg. It helped a lot. I started to feel a little bit more human, at least in the brain area. I finally got in to the OB-GYN, and he did a biopsy and trans-vaginal ultrasound. We got the results 2 weeks later and he called me in to go over them. He said I had hyperplasia with atypia. Cells were dividing rapidly, and he was very concerned. He recommended an endometrial ablation, or a full hysterectomy. At 49 he wasn't concerned with me having a sudden maternal urge (I have no kids), so he was fine with either choice. I decided on the hysterectomy, because why not? Endometrium grows back after an ablation, and why bother at my age? Just yank it all and let me get back to my life.
He said he didn't feel safe doing the procedure, since the cells were most likely cancerous and rapidly dividing, so he sent a referral to one of the cancer centers in OKC. I expected a call within a couple of weeks. I mean, really, if I have the early stages of endometrial cancer, they'd call me in immediately, right? Right?
Crickets. Literal crickets for 4 months! I was very concerned, hell, worried I was going to get full blown cancer and these jackasses weren't going to try and help me at all. I called OB-GYN several times during that 4 month period, and was told the cancer center in OKC wasn't returning their calls. I called them numerous times, and could never get a person on the phone.
I was told it was the pandemic. The pandemic was shutting everything down and causing huge backlogs for non-Covid issues to be seen. I told OB-GYN to refer me to the oncologist from Tulsa, who also worked once a month in Stillwater at the SMC Cancer Center. He didn't want to, he wanted me to see the doctor in OKC (who wasn't returning anyone's calls!) I called SMC Cancer Center and asked how soon I could get in with Dr. Thomas. His office called back within 2 hours asking for my chart and biopsy results. I had the Womens Clinic send my information to Dr. Thomas in Tulsa. Within a week, they called and had me on the schedule to see him in Stillwater on his next visit.
This is where the story gets good. And by good, I mean, WHAT THE ACTUAL FUCK. Thanks for sticking with me this far.
Got in to see Dr. Thomas. I researched him and learned we have the same Alma Mater. That day, we were both wearing t-shirts from said same Alma Mater. Instant bonding! I also work in Administration at said same Alma Mater, so we spent some time discussing (gossiping) about my department since he had taken classes with a lot of my faculty during his undergrad. Then he got serious and handed me my biopsy report. He told me he was going to assume I wasn't shown this, since I am:
1. A Master's of Science graduate student in Education Leadership - this making me a researcher who knows how to do research, do research, and understand research.
2. Work full time in a Physical Sciences department at a Big 12 University.
3. Edit manuscripts for my Dept. Chair, thus proving I am scientifically literate. You can't edit scientific manuscripts without having a good, solid knowledge of said science. If he's alternating between "adsorb" and "absorb", I have to understand his research in order to correct his manuscript. This is important because his manuscripts have to be peer reviewed before they can be published in a reputable journal.
"Read it to me, out loud," he said.
I started reading from the paper in my professional scientist voice. It didn't take long before I began to falter as I came to the realization I had been lied to.
"Read it again," he said.
This time, I read it with a lot more heat in my voice.
Diagnosis: no hyperplasia with atypia, no abnormal cells detected
Dr. Thomas waited for me to explode. I didn't. I just stared at him in anger and horror. He offered to do another biopsy to make sure, but he suggested I fire my OB-GYN immediately and find someone who actually gives a shit about me.
I was still randomly bleeding, 6-9 weeks at a time, so we agreed on another trans-vaginal ultrasound and biopsy. The attached photo shows he took 3 samples from my uterus. He wanted to be sure.
A little ditty about endometrial biopsies:
They hurt like a motherfucker.
Take 2-3 ibuprofen before you leave the house to go to your procedure.
Relax. It usually only lasts a couple of minutes. The doctor normally takes 1 or 2 samples. Pinch, snip, clip, done.
Not this guy. He wanted to be surely sure.
He went for a 3rd pinch snip clip. My uterus seized up in the most painful spasm I ever had in my life. I almost came off the table. He was seated on a little rolly stool so he shot back away from me before I could connect his head to my foot. He triumphantly held up his little weapon of Uterine Destruction and declared, "Got it!"
"Yeah, you almost got your ass kicked mister," I growled at him.
"It was worth it to get this beauty of a sample."
So, after a biopsy of your uterus, expect some bleeding and cramping. I had severe cramps for 2 days. I was not amused. We're talking laying in bed with a heating pad and ibuprofen every 4 hours kind of cramping.
Got the results back in a couple of weeks. No cancer. No hyperplasia. No abnormal cell growth. He recommended I find a new OB-GYN fast. I decided fuck it, I'm done. I'm never seeing another OB-GYN ever again.
Dr. Thomas said several times he's convinced my issues are endocrinal. I filed that away in the back of my mind.
(if you ever do test positive for cancer and you are in the Tulsa area, I highly recommend Dr. Eric Thomas! Make sure you have a sense of humor with him.)
My GP started pressuring me back in March of 2021 to find a new OB-GYN. The Women's Clinic has several, but they have a fucked up rule you can't switch doctors there. So if you go there, you are stuck with the same doctor and can't move over to his colleague on another floor. I saw my GP again, and asked if he was still best buds with a gynecologist who had his own clinic. He was always full, and not taking new patients, so GP would have to call his buddy to get me in.
Which he did. Buddy-GYN's office called the very next day to schedule me in. He had been sent my chart and was concerned about the long bleeds (6-9 weeks in duration) and why the fuck were they happening after being 3 yrs post-menopause.
I went in for a consult in April of 2021. First thing out of his mouth, "Has anyone ever talked to you before about PCOS?"
I laughed.
I laughed because every GYN I saw over the last 20 years told me I didn't have PCOS, endometriosis, or any sort of hormonal issues. I was just fat, lazy, and a piggy pig pig. I actually had one OB-GYN tell me to go on The Biggest Loser. Fat shamed while sitting there naked on his table after an invasive exam of my female bits. Thanks a lot, asshole.
I told him about that. He informed me he could tell by LOOKING at me I have the classics signs of PCOS. I use an epilator on my crazy man-hairs, so he asked if I was tweezing or waxing. I about fell out of my chair. Nobody ever believed me that I was having to remove crazy thick hairs off my chin and neck all the time. He asked if I ever had ovarian cysts. Affirmative, I was diagnosed with ovarian cysts the first time one exploded back in 1994. He stood there, holding the bridge of his nose and shook his head.
"Well, going by your chief complaints, your abdominal circumference, history of bursting cysts, and no period for 3 years, I am saying you have PCOS."
He went on to discuss my need for an appointment with an endocrine specialist, he was convinced my thyroid tanking out sent my ovaries back into production, and now my hormones are all over the place, most likely, and I needed specialized care.
He must have talked to GP, because I soon got a call from the endo clinic to come in.
This post is already long and tedious, but I am happy to say I finally have 3 doctors who listen to me. My new Endo doc tripled my levothyroxine and scheduled a follow up blood test for next month. Buddy-GYN talked me into a pap smear and cervical exam in July as well. He also wants a mammogram, which I begrudgingly need to schedule so he doesn't chew my ass in July when I walk in with no results. GP is working on my other issues (weight, bad fluid retention, etc...). We discovered from a blood test last Friday my iron levels are dangerously low. I am now on a Rx iron supplement. I've always struggled with anemia, but it never occurred to me or GP to check my iron levels. If you're a woman, and you feel like absolute dog shit and your doctor can't figure out why, have your iron and electrolytes tested. It'll probably take about 3-4 weeks for me to see any results from the iron supplement, but I can already see a reduction in fluid retention.
In September, I have an appointment with Dr. Le at Integris in OKC. He's a bariatric surgeon. I have gained so much weight from having PCOS and Hypothyroidism that I need to drop a lot of fat fast. I'm pretty healthy - I don't have the normal problems obese people tend to have. I'm not diabetic, don't have sleep apnea, my cholesterol levels are good. I am what they call "healthy fat" which seems like an oxymoron. However, it will improve my chances of getting approved for a sleeve gastrectomy.
I turned 50 last week, and had to endure 3 decades of no one listening to me. I feel I lost so many years of my life and I can never get them back. I hope this post reaches a lot of younger women having issues. Keep looking for a doctor who will listen to you. It sucks we have to hunt for these unicorns, but they do exist. I finally have a good team who actually cares about me.
You have a right to be listened to! You have a right to be heard!
I was asked: Who are my doctors?
Dr. Daniel Brown D.O. Stillwater Physicians Clinic
Dr. Yasuto Taguchi M.D. Taguchi Women's Clinic
Dr. Wynter Kipgen M.D. Stillwater Diabetes & Endocrinology
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kyotakumrau · 4 years
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2020.09.19 ROCK AND READ 091 - interview with utA - translation PART 1/2
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'I'll be damned, what was that?!'
Interview: Yukinobu Hasegawa
Photos: Yosuke Komatsu (ODD JOB LTD.)
Translation: kyotaku You can buy the magazine on amazon, tower records etc ฅ( ̳• ·̫ • ̳ฅ)♡
After Kyo, Takumi and YUCHI from sukekiyo, it’s time for the interview with utA.
He’s experienced white collar work in his hometown Niigata, but couldn’t give up his dream of being in a band, so he moved to Tokyo, his band 9GOATS BLACK OUT attracted attention because of their fantastical music yet then disbanded, but because Kyo had listened to their music utA has started a new episode of his music life.
We ask him about the very start of his interest in music and his life until now.
And then... With many interesting stories like the one about the eerie episode when he came to Tokyo, we can show you utA’s odd music history.
utA  / sukekiyo: profile & information
birthday March 26th. joined Kyo’s project sukekiyo as a guitarist in 2013. other members are Kyo (vocal), Takumi (guitar, piano), YUCHI (bass) and Mika (drums). their last release is the video compilation ‘LIQUEFACIO’ with the live footage from their show in Nakano Sunplaza in June 2019.
-- First, I’d like to ask you about the time you got into rock and playing the guitar. Were there any significant bands or guitarists for you when you were young?
utA: I think it was around elementary grade 5 or 6, it was X (-Japan). I was born in Joetsu city in Niigata, there was a CD shop stocked with v-kei and rock stuff there. It was a rural town, but at that time, there was a shop that was selling nothing but rock stuff.
-- It seems to be a quite early to start frequenting CD shops as a elementary school student.
utA: Yeah, I think it was early. I had a friend who was playing the piano, I heard him playing songs like “Silent jealousy” from X, I think that was how I got to know X and their heartrending phrases I love. After that I wanted to hear more from them so I listened to their first indies album “Vanishing Vision”. And then their first major release “BLUE BLOOD”.
-- You weren’t playing the guitar yet when you got to know X as an elementary school student?
utA: It was accidental, but my brother was playing the guitar. I think he liked ZIGGY, JACKSONS’N’JOKER, COLOR, BUCK-TICK etc when I was five. So I have seen my brother playing the guitar at home, but he didn’t influence me at all (laughing). I remember he liked to sing by himself while playing, I have this impression that he was a good singer, but didn’t play the guitar that well (laughing). But we were far apart in age, we weren't that attached, I felt if I just grabbed the guitar I could play. So I borrowed it and fumbled trying to play the songs as I listened to them.
-- But playing the guitar was then just something fun to do?
utA: It was definitely something fun, but I remember entering a music studio around junior high. I briefly started a band with friends. I guess there was no proper shape to it, but I wanted to play some songs, gathered friends and we played “Silent Jealousy”. I played the guitar, I tried really hard with the main phrases and so on. But I really couldn’t play well (laughing). My brother taught me things like A chord or E chord, in basic power chords, things like guitar solos came out very shaky. I recorded that. With a very simple cassette recorder with two buttons, play and record. I have no idea what happened with those cassette tapes, but I’d really kill to listen to them now (laughing).
-- To start a band and use a music studio in the junior high, that's quite remarkable. You were driven this much?
utA: Yeah, by X. I was also attracted by their looks and make up. It's not like all my friends were into the exactly same stuff but there were people who liked music. And there was one music instrument shop, I also went there often. The recording on the cassette tape happened at the end of junior high or start of high school. After X came LUNA SEA. It's a bit hard to explain, but in a way LUNA SEA matched my preferences better. Isn't LUNA SEA a metal band? With INORAN's clean guitar and SUGIZO's distorted guitar, this kind of separation was also novel. I got a shock running through me like 'I'll be damned, what was that?' There is such an awesome clean guitar like that? I though cleanly played super impressive phrases were amazing.
-- Your guitarist opinion was born at that time.
utA: That's right. It was a great impact, from creating sound, through phrases all the way to arrangement. I needed to know how do they get such beautiful sound. Until then I kept thinking that guitar sound should be distorted. I also learnt from music magazines etc that with a delay and chorus you will get a nice effect. And I remember listening to late night radio show "Break Out" or it was in some magazine that SUGIZO advised 'you can get our sound if you use an effector like this'. That's why the first effector I bought was the delay and chorus. My brother had the ones to create distortion, so I only had to add the delay and chorus. I also used my brother's Fender Made in Japan Strato(caster), so it was perfect for clean sounds.
-- So when you became a high school student did you get even more friends interested in music?
utA: I did. I would start talking about music right after coming back home. My home was our hanging out place, people were often surprised by the amount of CDs in my house (laughing). Listening to songs, we watched live DVDs and we all talked about the cool phrases we heard. And then I decided to buy a guitar model used by the artist I liked. So then it was exciting to talk about saving up for one (laughing).
-- You were already using a Stratocaster, but had another guitar you wanted?
utA: Now I know well that Fender’s Strato is a really good guitar, but at that time the look of the guitar was very important, it felt like strato was too simple. And that’s why I bought a guitar used by the artist I haven’t mentioned yet, so it might feel like coming out of nowhere, but it was the model used by Shin from Kuroyume. It was a Les Paul Model that came from GrassRoots, with two single coils. One of my friends was a big fan of Kuroyume so I often listened to their music and really got into Shin’s playing style. Les Paul models have nice shape and they can produce both clean and distorted/dirty sounds, so I decided to get Shin’s model. I was torn if I should get INORAN’s model instead, but it gave an impression of clean sound and because I also wanted to produce distorted sound I went with Shin’s. As a stupid kid your whole evaluation criteria is based on the sound created by the musician, right? Ah, but I just remembered that time I chose single coil. Even though for rock you’re much better off with guitars equipped with Humbucker.
-- You’re using the Fender’s Strato with sukekiyo.
utA: I am. I’m also using a Dragonfly, I’m swapping between them with a tap switch. If I had to say which is better, I like the sound of the single coil. I definitely got influenced by the clean sound created by INORAN. Even now I care a lot when creating clean sounds.
-- When JHS students get into bands and guitars, isn’t it easy for them to get easily misguided? They start to neglect their studies, join some band as a bassist, choose their high school based on the chances of starting a band there and so on.
utA: By some band you mean sukekiyo (laughing)? I don’t have an interesting story here, I really did my best studying as much as I could. My parents were so amazingly kind/supportive so I wanted to make them happy. I still feel like this. I didn’t want to give them any shock (laughing). At that time I remember I often felt they would be happy if I got good test scores. And I simply hate losing. I’m not someone for whom studying comes naturally, so I remember studying extra hard before the tests. In the past we also got ranked (depending on the test scores) so it was another motivation not to lose. But well, I ended up losing (laughing).
-- So you properly continued to high school?
(kyotaku: in Japan compulsory education ends with junior high school at the age of 16; high school is mostly for the sake of going to university.)
utA: If possible I wanted to go to the a good high school, but my teacher told me ‘it might be a close call so it’s better to go there’ (laughing). I went to the school they recommended. It wasn’t a normal high school, it was a technical school.
-- You get specific qualifications. So the course of your future was decided then?
utA: I loved music and guitar, but I didn’t see it as my dream future then. That’s why I was planning on going to university. If not I would be starting work, so I wanted to go to university. At the technical school you learn things like civil engineering or construction. So I applied for the referral to the university that had classes like that, but I was rejected. And I came to hate studying for entrance exams so I gave up on university (laughing).
-- Didn’t Takumi go to the university to study designing?
utA: He did. In this we are a bit similar. Our personalities are totally different, but we definitely share some things like our roots and some points. Takumi managed to go to university though, as I failed to get referred I had to look for another way (laughing).
-- And finally we are talking about starting a band?
utA: No, I started to work full time. At a surveying office in Niigata. I worked there for about 2 years. I hated studying for the entrance exams, but I got the national qualification for surveying. I remember I was thinking that if I have to do it then I have to get it and I was studying like crazy (laughing).
-- When you start working full time I think you shift to a totally different mode from being a student.
utA: Yeah, it was like that. But even as I was doing my best at work, after coming back home from work I was just listening to music all the time. And I spent all the money I earned going to music stores and buying up all the CDs. I had meant to enter a different mode but in the end it wasn’t possible. Most of the bands and musicians who were releasing music at the time were the same age as me, or just a bit older.
-- Did you start to feel a bit envious, feeling more that you could do that as well?
utA: Yeah. I started to write my original songs a bit from the end of HS. I was thinking that if I could make music that was my own style I could make it in music. That feeling has not changed until now.
-- If you were to describe your first original song, what was it like?
utA: Simply saying, it was very influenced by LUNA SEA (laughing). It wasn't a metal song, but it had clean and distorted sounds layered. I created 2~3 songs before I turned 20.
-- Did you do anything wanting to release those songs?
utA: So. I'd made a firm decision to quit my job at surveying office. When quitting I said honestly 'I want to pursue music, so please let me go' (laughing). And then my boss and coworkers cheerfully told me 'then do it!' I even had a farewell party with 'let us know when you release something' (laughing).
-- But for parents, there's no way they reacted like that. Like, 'my son who tried so hard, started working and even got a licence, now wants to quit to do music', there's no way a parent would be happy about that (laughing).
utA: You're right. My parents had a lot to say. It was probably the biggest nagging of my life, seriously. It was worse than puberty (laughing).
-- But you didn't change your mind?
utA: No, the need to pursue music was stronger than that. I quit my company when I was around 20, started to look for band members when I was around 21, when I actually managed to start a band I was around 22~23.
-- Did you try contacting your band mates from elementary and jhs times to network?
utA: I stayed in touch with my classmates, but they totally quit music. There was no way for a deep talk there. That's why I had to do it by myself, in a way starting from zero. First I started to look for band members through the music instrument shops. I've made posters about looking, wrote my contact information, the type of posters where you tear off the bottom bit. The shop staff let me post them in their shops.
-- A simple method. If I remember right, people used to post some self-introduction and a description what kind of band they'd like to do.
utA: I will again add another band name, but I listed X, LUNA SEA and La'cryma Christi. I was also hit hard by La'cryma Christi's worldview. Even as I heard about them quite late, I think after I graduated high school. X, LUNA SEA and La'cryma Christi had the biggest impact on me. My 3 pillars. I absolutely adore La'cryma Christi's "Henseifu". The moment you hear the song doesn't it feel like various scenes just come up?
-- Those scenes are stateless.
utA: Exactly, they are stateless, and full of sadness. When I first heard the 7/8 time signature, I was surprised like 'I'll be damned, what was that?' I was totally owned by that worldview. At that time, La'cryma Christi was my number one. For a while now I've been friends with HIRO, was able to play together with them once and even had a photo shoot together.
-- But currently TAKA is working in a jewellery industry, no? By the way, when you posted your 'looking for band members' ad, how many replies did you get?
utA: There were few, but one came from someone with whom we formed a band at the time. In 2013 my own band had disbanded, but I was most surprised when contacted by the guy who then spent all this time with this band. He asked 'please let me join', but I also asked him formally to join. I'm talking about the bassist, hati.
-- This band we're talking about is the visual kei of Niigata that has changed several times?
utA: Yeah. First it was Laypua, after that Layarch, then Rayarch. It was changing keeping the 'Lay/Ray' connection. The live performance activities were focused on Niigata city.
-- From looking for the band members to the formation of the band it took about one year, during that time were you writing original music ?
utA: I don't think we had more than 10 songs,  but we had enough for one album. The band that done those songs took about one year to finally start activities. At the time, there was a music club (live house) near Niigata station called Z-1. I think now it's called CLUB RIVERST., my first live performing experience was at that club.
-- So it was the first show as a band that is the first step in following your dream. What was the response like?
utA: I think it was really terrible (laughing). At the time it was when we just decided our form/style, so we just went with 'let's hope this is cool enough' (laughing). I was looking for guitar phrases that would be very me, but I couldn't play them at all. We were trying really hard only with things to show, we also had heavy make up. For the so called artist photos, our vocalist was very skilled with creating great photos, so there was a lot of 'let's do make up more like this' etc, so at the meetings of band members the topic of the vusuals came overwhelmingly more often than music (laughing).
-- Your songs were similar style to La'cryma Christi?
utA: Nope, I loved La'cryma Christi, but our music was more like 'The Visual Kei' style. For our worldview, it felt like there's still more to come. It was quite heavy rock, could be said it was Tsutatsuta-kei (laughing). I was playing in this band in Niigata until I went to Tokyo, for about 4, 5 years.
(*Tsutatsuta-kei was a v-kei subgenre that developed in the early 2000s, as you can imagine from utA's comment it's heavy and fast; and like Nu Metal that influenced the subgenre there's a lot of shouting, and unconventional structures and variety of different styles)
-- If you continued for that long it means you had to have some fans?
utA: In Niigata we did, yeah. I felt 'I can do it' as it wasn't a band with no fans, so from the band's later time I started thinking about going to Tokyo. In Niigata what we could do was limited. So I told the band 'let's go to Tokyo, but most of members wanted to stay in Niigata. Each of them had their own life there.
-- Did other band members have proper jobs?
utA: Nah, everyone was working part-time. All of us prioritized the band. That's why I suggested we should go to Tokyo, but only me and hati, the bassist, were interested. And we left our home Niigata with guitar and bass for Tokyo having only about 40~50k yen between the two of us.
(*400~500 US dollars, 300~400 euro)
PART 2 HERE
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stonertransdad · 3 years
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Life Update since I hadn't been on here in forever
The pandemic was/is wild! Lockdowns started literally around the time we were going to the fertility specialist to get her pregnant. I lost my job to COVID in March shortly before we did the procedure, but we decided there's never really a good time to have a kid. Why not during a global pandemic when one of us in unemployed? (BTW, I don't recommend having a kid during a pandemic. Not being able to go to all of the appointments and having to sit in the parking lot was brutal.)
Let's talk about May friends...it was rough. (TW for mention of suicide btw. I'll post a gif where it's safe to start again if you wanna skip over it.)
So May 1st is the anniversary of my father's suicide. It had been 4 years. I found his body and since he wasn't married, I had to handle his affairs and arrange his funeral. May 1st, 2020 my wife and I had a Zoom game night with our friends and I got drunk because everyone was drinking (except my wife because she was pregnant). After our game night at like 2am, I had a psychotic break. I threatened to kill myself numerous times. My wife tried to talk me down, but eventually called the cops to take me. I thank her for that because looking back, that was the moment I knew something needed to change. I was convinced the cops were gonna kill me because I'm a trans dude in rural West Texas. I legit took the phone out of my wife's hand, hung up on 911, and yeeted her phone across the backyard and tried to hop the fence. Eventually the cops came and talked me down. They took me to the hospital an hour away in handcuffs (for their protection I did nothing wrong). They took me to the religious hospital that I was born in. So when they looked up my info by my name and date of birth from my driver's license (I only changed my middle name) literally all my paperwork and my bracelet had my deadname and wrong gender despite all of my legal stuff saying male with my new middle name. I mentioned it to them and they didn't care. They misgendered me the entire time I was there. I had hit my head hella hard on the bath tub when my wife was trying to snap me out of it, did the hospital even check me for concussion? Nope. I had punched so many things and my hand and wrist were swollen and discolored. Did they check out my hand and wrist? Nope. I was there for over 10 hours before I was able to convince them I was okay and that it was just the alcohol. Did I mention during that 10 hours I was literally out in the hall on a gurney with no mask and this was when COVID was running rampant in Texas (the first time)? I heard people die that night. I had nothing to distract me because they took away all of my personal items and clothes. My wife picked me up and we went home and I have been sober ever since. It's not the first psychotic break I've had with alcohol in my system. Alcohol just doesn't agree with me, but I'm finding new things to replace it with.
TW has been lifted...it's safe now.
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A couple of weeks after that I began teletherapy because I had been on the same mood stabilizer and anti-depressant for almost a decade. The more I thought about it, the more it made sense that I felt like it hadn't been working for at least a year. This is a reminder to check in with your doctor if you feel like your meds aren't working. You may just need a different dose or a new med. There's no shame in that. I bounced around on various medications trying to find the right combo, some side effects scarier than others, but we got there. Before this, I had been diagnosed with ADHD, Major Depressive Disorder, Borderline Personality Disorder, and Generalized Anxiety Disorder. My therapist threw out my Borderline diagnosis and said it was CPTSD instead, which made sense.
Fast forward to December because my wife was pregnant, I was unemployed still, and we did absolutely fuck-all because the global panini was still raging.
Our son was born on December 3, 2020. He weighed 5lbs 9oz and scared the ever loving shit out of us. He wasn't breathing when he was born so they called NICU in ASAP. I'm freaking out because I can hear and see what's going on while my wife was asking if he was okay as they put her guts back in place to sew her up. 5 or so minutes pass and a nurse asks if I want her to take some pictures. I'm like is he okay, he still hasn't cried. She's like "oh yeah, he's chillin." This goon was being held by a nurse and was just looking around not crying or anything. Chillest baby ever (he still is btw). I held him next to my wife's head until it was time to go back to the room. Little dude did have to spend 4 nights in the NICU because he couldn't keep his sugars or temperature regulated, but he was healthy otherwise. He's now 4 months old and is starting to sit up on his own a little bit and he's OBSESSED with standing. He's still a little guy, but very healthy and growing like a weed. He saves my life daily.
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So after being unemployed for over 9 months, I started a new job working in a call center. I absolutely hate talking on the phone. It gives me anxiety and throws me into panic attacks, but I had been putting out hundreds of job applications since I lost my last job and this was the first offer I got. I wasn't really in a position to turn it down since my unemployment had ran out 2 months prior. It was 2 months of training, then we'd be on our own. I got thru the training and thought I could handle it...until they started putting us on live calls with someone helping us if we got stuck. My mental health hit the lowest point it had in a few years and my wife was terrified she was going to lose me. She convinced me to quit on February 28th (not because I didn't want to, but because I'm a stubborn ass who felt guilty). My meds got tweaked a little bit more dosage wise during this mess.
Starting about mid-February, I was experiencing severe shakiness, tremors, and spasms. I've always been a shaky person and never really thought too much about it, but at some points I could barely feed myself, or get a drink, or hold my son. On March 7th, I tried to make an appointment with my doctor about the weird symptoms I was experiencing, but she was out of town and her next opening wasn't until the 31st. My body said that won't work and my wife rushed me to the ER on the 9th...I had begun having seizures that day. I had no previous history of seizures. Got to the ER and had a seizure literally as I was walking thru the door, so they rushed me straight back. They took some blood and that was literally it. No MRI. No CT. They pumped me full of Ativan and said it was just a panic attack and to go home and chill.
Spoiler Alert: It wasn't just anxiety. I was having 20+ seizures a day. On the 10th, my wife rushed me to a different hospital...the good hospital over an hour away. First we had to drop off our gremlin with my mom to make things a little easier. Yet again, I had a seizure as I walked in the door and was taken back immediately. I don't really remember much because they kept pumping me full of Ativan and morphine because I had been in excruciating pain from the number of seizures I'd had. I do remember them doing a CT pretty quickly after I got there. Then they weren't happy with the results of the CT, so they took me to get an MRI, which showed possible signs of Multiple Sclerosis (but I didn't find that out until AFTER the notes showed up in my patient portal after being home a few days, so I raised hell...more on that later.) They did a 24 hour EEG on me and it showed nothing abnormal. Also, EEG glue is a bitch on your hair and scalp. After looking at everything and given my previous mental health history, they diagnosed me with Psychogenic Non-Epileptic Seizures, or PNES. It is a subset of Functional Neurologic Disorder, or FND. I couldn't walk well anymore and had to use a walker when I was discharged. I was in the hospital for 3 days.
When I had my follow-up appointment on the 23rd, I asked why the possibility of MS was never mentioned to me since it was very clearly in the notes. The doctor didn't have an explanation. He called in a referral to neurology so I could get a 2nd MRI to confirm MS and marked it as high priority. He also didn't take my pain seriously. My pain levels had been at a 5 or higher every single minute since they took me off of the morphine in the hospital. He told me to keep taking prescription strength doses of ibuprofen and Tylenol, which I had been. I let him know I had been and it didn't even take the edge off the pain. He ignored me. Leading up to this appointment, I had also added urinary incontinence to my growing list of symptoms and was forced to wear diapers so I didn't have to do laundry all the time. The doctor also took me off my ADHD meds because they were lowering my seizure threshold. He also took me off of my sleeping meds and nightmare meds for the same reason I'm assuming.
I kept my appointment on the 31st with my primary doctor because she's been my doctor for 5 years now and I knew she'd take my pain seriously. She did. She immediately wrote me prescriptions for a muscle relaxer and Tylenol 4. She also told me that my referral had been rejected by neuro. She said my case wasn't a good one for what she called a "wallet biopsy" and the doctors in neurology could be real assholes. She immediately sent the referral to other locations to get an approval. I am still waiting on that despite it being marked as high priority. She wrote me a prescription for a wheelchair because we both agreed my wheelchair was not enough for particular days.
Yesterday my wheelchair was finally ready for pickup, so my wife drove me to go get it. I'm still unable to drive due to my seizures and my tremors and twitches as it's predominantly in my legs and arms. I am an ambulatory wheelchair user now. Some days I can go short distances without my walker, some days I can't go without my walker, some days I can't even get out of bed, and some days I will be using my wheelchair. Don't judge a book by its cover, not all disabilities are visible. I have managed to keep my daily seizure count down in single digits and have even had a few seizure free days. They are still incredibly taxing on my body. I feel like I can't ever replenish my spoons fast enough to keep up with anything in my life.
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So all in all, life has been chaotic. We are moving from Texas to New Mexico in the next few weeks, which should be interesting considering I can't overdo it without throwing myself into seizures. We will be closer to my mother-in-law so she can help us with our son and I can start resting a bit more on the more difficult days. Being a stay-at-home dad with an invisible illness has been one of the most challenging things I've done in my life, but I wouldn't change it for the world.
Sorry this is so long. I just wanted to update my followers since it's been over a year since I posted before a few days ago.
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Josh,
Sometimes it's really fucking difficult to not believe that the universe is personally biased against me. And I know that's kind of rich coming from the one of us that didn't get driven to suicide. But I just, I know you of all people would understand. I wish I had you to really talk to right now.
I'm gonna ramble because I just need someone to listen. But where to fucking start? Life right now is just spinning plates. On one day this week I found out a critical hospital referral I was relying on had never been made; I was rejected by yet another landlord for a house next year that I'd really been betting on; my supervisor met with and bullied me for a solid two hours and my one social event of the week got cancelled. So, that's about when it all started to get too much.
The doctor I've been seeing has been incompetent from the start and made so much work for me in the 6 months I've been in her care. Despite diagnosing my Potentially Life Threatening connective tissue disease, she never even named it in our appointments, leaving me to discover the true horrors of my body through playing detective with my blood results. Long story short, to be confident that I can go on a treatment for it without bleeding out, I need to see a geneticist. But despite agreeing that I should see one, she's refusing to refer me to one directly. Instead, she's referring me to a pain rehab clinic at a separate hospital and saying they can internally refer me to genetics. The wait on the pain rehab clinic? At least two years. Plus, of course none of this information was forthcoming and required weeks of emailing back and forth. So now I'm angry, anxious and stressed about my health. I want to make a formal complaint but I don't know when I'll find the time.
That wasn't even the worst thing, though. The worst thing was uni reminding me just one last time that it truly doesn't give a shit about its students and why I hate it to its very core. The final piece of work I have left to hand in is a research project that I've been working on all year. However, my supervisor is an utter cunt, and I don't say that lightly. He's incredibly narcissistic and rude for a start. For a presentation I had to do, he forced me to use his own slides without ever looking at mine. He once ended an online meeting because I misspoke when explaining a figure, telling me to call him back when I knew what I was on about because he "never forgets what he sees and doesn't want his brain soiled with incorrect information." Given he never remembers what we've spoken about from one meeting to the next, I call bullshit. Oh and this week? He asked me to explain a figure to him and when he said he didn't understand I asked him if he was looking at my screen share. He said no. I just despair!
To make matters worse, he's never fucking happy with me. He's made me start my work from scratch 3 times now and had a different problem each time. We're rapidly approaching the deadline now, so to get all the work done for the 3rd time I've been working 9am-5pm 6 days a week. Not that he cares. The results don't fit his hypothesis, so I must simply be incompetent. He even once had the audacity to suggest that I "didn't want to do the work" while looking through a 70 page document of my results, because I couldn't explain the findings of a figure I'd made a month ago off the top of my head.
In this weeks meeting, he again gave me an extortionate list of new tasks to do, while berating me at every turn. With a month left submit my thesis and my write up not started, I tried to explain to him that I wouldn't have time to complete the list. He just shrugged and said, "Well I think you should do it." And yes, this man is aware that I have been struggling physically and mentally recently.
I didn't know what else to do to make him listen, so I contacted the course supervisor (who I'd already briefly made aware of my issues with him). She told me to "quit" and "just get on with writing my thesis"... until four hours later after she had spoken to my supervisor and completely changed her mind. She video called me to tell me to do the work and I just broke down. I don't make a habit of ugly sobbing in front of people I've only ever met twice over Microsoft Teams, but this was a particularly bad day.
"Trying to do this work is going to destroy my physical and mental health."
"I can't do this anymore."
"He never listens to me."
"I've been working 6 days a week and it's killing me."
She didn't care. She told me that since my supervisor is an experienced professional, he must know how much he's asking of me and since he insists it's quick and easy stuff, it must be. This man has never done this analysis himself. He doesn't even know how; half the stuff one of his lab workers taught me and the rest I taught myself.
"Chill out" and "calm down" she told me, "do the work and if you have any problems ask John (the lab worker)"
By the time I pressed the leave button, I could barely breathe, let alone talk. I was just choking and sobbing and had snot pouring down my face. I was just so tired. So stressed. So... ignored. I didn't know where I would find the hours in the day, but I started by cancelling the trip to see my parents this weekend. To them I am not a student, and a student with health problems at that. I am simply a machine to use for free research.
I just wanted the stress to give me a break. I just wanted a break. I was genuinely afraid that my heart was going to stop from the stress alone. I didn't know where else to turn. The counseling service put me on a waiting list. My tutor told me to "just keep trying my best". My mentor told me to talk to my course supervisor. My course supervisor told me to work. A was busy revising for an exam the next day and I didn't want to bother him. So, I turned to my unhealthy coping mechanisms instead.
I didn't mean to do it as badly as I did. I just wanted to scratch my skin enough to feel it burn and give me something else to feel instead of the huge mass in my chest. But the scissors were sharper than I thought and when I looked down there were four long cuts that had gone through the skin and fat. I knew immediately I'd fucked up. There was no way those edges were coming together on their own. Honestly, I was just mad I'd given myself something else to do. So, I covered them with gauze and tape and kept on working. Because I needed to work. I needed to get it done. I would deal with going to the hospital later but I couldn't lose these working hours.
Once the blood was dripping from the gauze I finally, begrudgingly, went to the hospital. Honestly? They were surprisingly nice. They were understanding and they listened. I was so worried that they'd think I was some cringy emo kid looking for attention. I honestly felt like a total knob going there, but I didn't have a choice. I never felt judged or like they thought I was wasting their time or that it was all my fault. Of course, I know that it was my fault and I felt like a fool. But I also don't blame myself for becoming so desperate. At one point a doctor came in with a medical student who was visibly shy and embarrassed when examining me. I told her I had a place at medical school, so not to worry as I'd be in her place soon. And again, I was shocked because they didn't once tell me not to go. I thought they were going to say "if you can't cope right now, starting medical school isn't for you!" But they never said anything like that. Instead they were shocked I'd gotten in to such a good uni and seemed incredibly genuine when they wished me well.
Oh, and the wounds? Thankfully I didn't need stitches so I got them pulled together again with steri-strips. And in case you didn't believe me that I didn't intend them to be so bad, I nearly passed out three times after looking at them. So, I truly am a fucking idiot, Josh. Lesson learnt, I suppose. Though I'm still afraid what will happen next time I run out of options.
It's finally the end of the week now, but the universe still hasn't given me a break. My mum called earlier and told me my rabbit will be crossing the rainbow bridge tomorrow as he seems to have had a stroke. I mean, it's a small mercy that he's an old bunny and he's been unwell for a long time, so it's not a shock. But it's still so sad and I'll miss him so much. What really tops it all off is that I was going to see him this weekend until I had to cancel my trip home due to the workload.
Man, I just. Why does shit stuff seem to come so easily to me? It's difficult not to feel personally victimized when shit news after shit news lines up so well. I wish good things came as thick and fast. I hope to fuck my luck changes soon because honestly I'm terrified that it's taking years off my life.
Thanks for listening, Josh,
C
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