#she got this referral like four months ago

[kitsunelike]

okay. my doctor won't send me in for genetic testing bc my mom already has a referral for that for her genetic condition. which is stupid but understandable. but the thing is my mom is taking fucking forever to figure out her referral and actually getting her testing done. im literally dying here can we speed this up jesus fucking christ

[icyhotheartwritings]

Pet death/incoherent grieving ramble

Loki passed away Tuesday night. It doesn’t feel real. I mean, we just celebrated his birthday - our birthday - three days before. He was fine. He tried to buck me off a couple weeks ago. He was sprinting around acting a fool when mom got Waffles out without him not a day before.

He was only 22. We were supposed to have years left. Years. I was expecting at least 28, hoping for 30 or more. I never expected to lose him so soon. He was so healthy, I did everything I could, every supplement he could possibly need, vets and farrier and anything he needed, he got.

We were training for a show next month. I was working out ways to cure him of not wanting to ride alone. We had plans to ride with people. We had a whole show schedule for the summer. I was going to build trail trial obstacles. We were going to conquer the fucking world. And now he’s gone. Just like that.

The worst - and best - part was… there was nothing that could have been done. It wasn’t a case of if we got there an hour or two earlier, gotten to the vet sooner, he would’ve been fine. There was nothing. There was no hope. When we got to the vet they were talking surgery, then said it was too bad for a referral, then she got the bloodwork back and he was gone. Suspected internal melanoma that killed his digestive system, or something similar. Wasn’t a gas colic. Wasn’t something that could be healed.

Some incredible stranger helped my dad bury him next to Dreamer. Dad buried his peppermints with him, every piece he could find in the tack room, like Dreamer had his butterscotches. We’re buying wildflower seeds to scatter over them.

The morning feeder bought some plastic flowers and taped them to his gate with an led candle light. I cried.

I swore that Loki would be my last horse, that I couldn’t go through the pain of losing them again and again like Star and Carrots and Quinn and Dreamer but I was supposed to have more years with him and I don’t think I’m done yet. The barn owner said his stall is mine, that I can take all the time I need to find the right horse and I think I’m giving it a couple months before I begin to look in earnest. Nothing could replace Loki. But he never replaced Carrots. And Carrots never replaced Star. And I know I can love another horse, but I just… I need time. There’s two BLM mustang auctions in about four months. I might go. Waffles is a mustang. He’s a good horse.

These past 6 months have been. Absolute hell. I’ve lost a cat, a dog, and Loki. Almost lost another cat, it’s a fucking miracle we still have him. But Darcy and Loki were not even 4 weeks apart. It’s been a hell of a March.

With Snarky and Darcy, at least, we knew it was coming. We had warning. Snarky had cancer. Darcy was old and sick. They were both old, older than they had any right to be. But Loki was young. And it was so goddamn sudden.

When I’m hurt and grieving, I don’t… show much outward emotion. I’m the rock for everyone else. I hold it down until I’m alone and can let myself cry. For him, I screamed. I fell to my knees and I screamed.

It feels like a piece of my soul has been ripped out of my chest. Torn out, pulled apart, and the pieces set to light. I loved that horse with everything I am. I hope he knew how much I loved him. He was part of me. All my animals are, but he was special. He was my baby, my everything. I thought he was dead during the big fire, the last thing I heard before the cell service went out was that my mom couldn’t get to the barn and my horse was trapped, and all I could think was that I wanted to run down that burning hill and join him. But we got through it, both of us, together. We got through everything together. He’d always be there for me, he’d wrap his big head around me and hug me as I held onto his neck and he’d let me groom him while I prattled on about this and that. And now I have to get through this alone and I don’t know how I’m going to do it.

I don’t know how to end this post. I miss my horse. And I don’t want to go to work at the barn tomorrow and see his empty stall with the breakfast he didn’t finish.

[lickmykickslove]

Wasted Time

I have wasted the last 10 years of my life, and have no idea how to cope.

10 years ago, I met the man that I thought was my forever. We were inseparable. We LOVED to be together, we loved to spend time together, and we just loved each other.

We went through life together. The good: We moved states, got our first apartment together, and adopted a cat together. The bad: we were homeless for a time, we both lost our jobs, and the cat we adopted got stolen. And even the ugly: I spent a month in a mental hospital after being at his mom's house, his relationship with his mom, my temper/anger.

I started therapy to reign in my temper/anger and learn how to better direct it. He also started therapy, he stated, with the intention of working through his past traumas. I love my therapist, I love going to therapy. I feel like it's working for me, I'm learning new things and how to better myself. He hates therapy. He hates his therapist and feels like his therapist hates him. Rinse and repeat for 2 additional therapists.

Life passes us by for 2 years. We live in his mom's attic, we don't work, we don't have any means for supporting ourselves. It makes one of us more miserable than the other (insert my mental hospital stay), and we discuss ways out.

An opportunity comes my way.

My aunt bought tickets for me and her to attend a concert in another state. She also offered me the opportunity to stay with her temporarily, while I'm looking for work in her state. She even told me to apply at the hospital she worked at and use her as a referral. I couldn't pass it up. At this point, we were still in his mom's attic, still jobless, and jobs I did apply to weren't calling me back. I was ready to try something else.

Life was renewed.

I came to the new state, alone. Went to the concert, and that same week, had a job. I was ECSTATIC to say the least. Shared the news with the partner, and he said all the right things, but he was upset that things weren't going the same way at home. I worked and worked until eventually I was able to get me a car. And then I rented my very first apartment, by myself. The plan once the apartment was secured, was for the partner and pets to make their way to the new state. I personally paid to book the travel for that to happen. 1st time he wanted to drive, i booked the rental car. He told me to cancel the rental an hour before he was supposed to pick it up. The 2nd time, he wanted to fly. I was about to buy the ticket, had it in the cart and was confirming the details, when he told me to cancel it. Both times, the reason was because he had to do something for his mom.

His mom.

She has 2 other children (my partner is the youngest) that don't speak to her. She is very manipulative and could/should be classified as a hoarder. The dynamic that her and my partner has is that she treats him like her husband. He "works" for her but never gets paid unless she decides to pay him, he has to be her emotional support, and he just has no backbone when it comes to her. He tells her no but she doesn't accept it and makes him feel bad until he just does whatever she asks. Mind you, she has a husband. Apparently, according to my partner, he's a "deadbeat husband that doesn't do anything" so that's why my partner feels the need to do it all. The hoarding is so real. She had a 4 bedroom 2 bath house. 3 bedrooms were packed floor to ceiling with stuff... So much you couldn't even get into the rooms. Her own living space was so cluttered and filled with shit. She once told me she had over 50,000 GOLF BALLS in her room, because she collected them. The attic that we lived in?? Had to make space for us amongst the shit that was already stored there. Looking back, this should have been the BIGGEST, REDDEST flags... But I loved HIM.

Four whole years later.

I have lived in the new state now for 4 years. All of those have been alone. Partner has never been able to put me before his mom (even though before I left, i got promoted to WIFE) and even TRY to come here for a better life. I haven't seen my dog in those years because partner still has him and was supposed to bring him to me. I'm still employed at the same place, working on a promotion, and working on moving into a new apartment. Life on my own hasn't been the worst; I've taken trips with friends, took a trip on my birthday, and have a few more trips planned that are coming up, but I do miss partner. I think more accurately, i miss having A partner. Because the one I have now, isn't. He has no idea what it means to be a partner and I'm tired of waiting.

[stahfakz]

My Fu$ked up life 26/2/24

Sooo, going back Christmas 2023, I get a call from my mum, except it's my older sister, calling from mums phone saying mums in the hospital and wanted me to pick up her partner, so that they could fuck off for the four days.

Bear in mind, I haven't had a holiday from work since b4 dad passed, over 2 years, and I was really needing 4 days off work to chill out. I didn't get it, I ended up with mum at the hospital everyday, and I ended up having burnout at work about a month later, and had to get senior manager approval to take off 2 days stress leave. But I digress.

Anyway apparently mum started her bs to Caz and caz told kez her partner who told her to take mum to the hospital because Caz a 53 yr old woman, is unable to make decisions on her own.

What they didn't tell me was that they were heading out, and wanted me to take care of mum without asking what my plans were or anything. I was dropping my own kid off at the airport that day. Ugh anyway. So I'm at the hospital, and the drs are telling me they think shes got a UTI or whatever, and awaiting some blood tests, but apparently when they dropped mum off, she was spouting her bs and it;s like FFS, Caz had fucked off and left me to deal with it. Stayed at the hospital for HOURrrrrsss with mum, but no results, I went home after 9pm I was so tired. I go back tot the hospital the next day, they've moved her out of the emergency ward and into a private room, they're still monitoring her, and they've sent the mental health care team to assess her, but cos mums religious, they can't do anything, cos it's 'god' talking to her or whatever.

Anyway, I ended up talking to Brocks mum about the sitcho, cos I know shes worked in aged care. She was really helpful, advised me on how to get aged care assessment done, etc, etc, as the drs would not allow mum to leave just yet.

I called Caz after talking to Brocks mum, and Caz had no fucken clue how to approach the situation, and I wondered why the fuck I even called her, and getting frustrated that she wasn't taking responsibility for her shitty decisions and fucking off, leaving me to deal with her drama so she can have time off work, cos she doesnt have kids, and the last time she had a holiday was 3 months ago, and wow thats so terrible for working for so long without a break.

The next day, the social worker visits mum and gets an aged care assessment referral for mum, and caz is back from her holiday. Because she wasn't around, all the referrals had my contact details, so when the next day, they finally let her out, I got several calls the following days about it all.

Mum missed her aged care assessment appointment, apparently they couldnt make it and had to re-schedule when they called her, but she hasn't heard back since.

I've set it up so that she gets groceries delivered, and sometimes Id go over and clean her house, I took her mower to be fixed, and brock mows her yard sometimes. Anyway, fast forward to today, on my last week of holidays. I pop over last week with milk, cos they didnt have any in her order last time, than I said I'd pop over on monday and pay her bills, etc. So I come over in the morning, wash and hang out her sheets, vacuum the floors, tidy up and mop her floors. Then I suggest she needs new sheets and towels and things, cos she can't see how moldy they are and they need to be thrown out, so i go to Capa and get her a bunch of new stuff all clean, come back and then tell her that she needs to call the aged care people, cos moving forward, I simply won't have the time with work, my own house work, my kid is in their senior years of high school and needs extra support for studies, and driving lessons, etc. Mum says, like always, that shes not going to worry about it, and I'm getting pretty stressed about it, cos she needs someone to clean her house, since Caz never does and I will not haven any more time, I told her I won't be able to come over again for months.

Anyway, I get so stressed, that I go to set this shit up on my laptop, but I can't she has to call them. So I tell her you have to call them now. And she screams at me saying no. So I said whatever and left. Just her yelling at me like that made me realise how fucked my life is. Doesn't matter that she fucking kept me away from dad and the rest of my family for years, I was never allowed to do anything as a kid, watch anything, have boyfriends or do anything, constantly abused psychologically and it's like fuck. Why the fuck do I bother to help my family anymore, who clearly give zero fucks about me.

Like, get a text from my older brother on my birthday saying hey hbd I have no idea where youre living or what you're doing. And its like, bro really? Are you that fucking stupid that you cant remember that I've been living at the same place for 5 years, working at the same place for 6 years.

I'm just over it. Everyone can go fuck themselves.

Fuck me right

[thelastspeecher]

dipperpines-kin replied to your post: "I rolled my ankle last week and it was still..."

usually if ur skin is purple and swollen theres a broken bone. i hope ur able to get it fixed

yeah that was why they x-rayed it seven years ago when I hurt it twice, and both times resulted in severe bruising and swelling and other signs of a broken ankle. the specific kind of fracture I have, with the tiny bits of bone being loose, is more difficult to spot, which is why they didn't see it back then.

I'm back at PT for the sprained ankle I got a couple weeks ago, so that part is being fixed. or at least, as fixed as it will be, given that I have hypermobility and also permanent damage to the ankle at this point.

agent-jaselin replied to your post: "I rolled my ankle last week and it was still..."

that really is unfortunate. Will you need to get it repaired after it’s healed from the sprain? Or is it just something that will continue and you now know why troubles you?

I'm not sure if my doctor will want to do anything about the loose bits of bone. I went to urgent care, after all, and haven't spoken with my doctor since I got the results of the x-ray. I think that for this kind of fracture, this many years on, the only thing that could be done is surgery. but it might be a case where the upsides don't quite outweigh the downsides, and they decide to forgo surgery.

I get the feeling my doctor will at the very least want to refer me to ortho and go from there. I'll ask her at my annual physical in a couple months. I mean, even if I wanted to, I might not be able to schedule an appointment before then. doctors are so booked up lately.

I love to complain on here, tho, so don't worry, y'all will be able to hear any ankle updates when I talk to my doctor.

eregyrn-falls replied to your post: "I rolled my ankle last week and it was still..."

UGH. I’m glad they found it now, but UGH.

...yeah. it's been a rough couple weeks, tbh. the person at urgent care told me what the treatment would be for that sort of fracture, and then said they do the same sort of treatment (a boot, crutches, referral to ortho, PT) for severe sprains.

and seven years ago, my doctor then thought it was a severe sprain bc they didn't see the fracture on the x-rays they took. but I didn't...get that treatment. I didn't get a referral to ortho (which I should have, after I sprained it like four or five months after spraining it the first time) and I didn't get a referral to physical therapy (which I ABSOLUTELY should have had, given how fucked up my ankle had gotten).

and my doctor back then was GREAT. she was thorough and did her due diligence for my gallbladder and heart arrhythmia. I genuinely don't know why she dropped the ball for my ankle. but because, for whatever reason, I didn't get the treatment I should have gotten, my ankle is permanently damaged.

that's something I've been spending the last couple weeks coming to terms with. (and something that I spent most of my therapy session today talking about; not PT, talk therapy.)

ANYWAYS on a lighter note, my physical therapist thinks that the bone pieces aren't from an avulsion fracture (when a ligament tears away a piece of bone) like I assumed. going off how I originally hurt my ankle and the location of the "loose bodies", she thinks that when I inverted my ankle (rolled it under me), it was done with so much force that the bones in my ankle smashed into each other hard enough to break off small bits.

and I think that's kinda metal.

[baker-father-figure]

The Label…

Almost a year ago, my wife and I started to get really concerned with the behaviors that our oldest son was displaying. He was getting in more trouble at his mother's day out program, having to go home several times for hitting/pushing other kids and his teachers. Initially we assumed it was always provoked by something and was just an over the top reaction on his part. The more we saw it happening though, the more it seemed to come out of nowhere the majority of the time. His speech skills were falling behind his classmates too. Even though he had a good vocabulary, he was incoherent a lot of the time becasue of how fast he was speaking and it sounded like gibberish. On top of those issues, he never participated in writing/coloring activities so he had no pre-writing skills. We would get pictures from his teachers on the GroupMe that they used to communicate with the parents and he would be in the backgroud of the pictures, laying down on the carpet or playing with toys by himself when everyone else was doing table activites. All of these things had us wondering what was going on with him. I had suggested that he might be on the Autism spectrum when some of these things started to become problems, but never really pushed it because of how smart he was. We finally started to realize that this could be a possibility, so we started the process of getting him evaluated.

We talked with our pediatrician to see what her thoughts on everything were and she gave us some steps to go through to eliminate other things as possible issues first. Step one wastion through our school districttion process through our school district. They l taking him to a pediatric ENT to get his hearing checked and everything came back normal there. After that, we had a consult with the pediatrician and got a referral for an appointment with a pediatric neurologist. That doctor's assessment resulted in a diagnosis of being on the high-functioning end of the Autism spectrum. At the same time, we were going through the evaluation process with our school district. They did two speech evaluations and also came to the same Autism diagnosis as the doctor. This started a whole new process of what behavioral treatment options we wanted to pursue to help him and us learn how to deal with the problematic behaviors.

Initially, we thought that the best route would be to get him enrolled in the school district's Early Childhood Special Education program. This process was able to happen relatively quickly and he started going to to ECSE five days a week for three hours in the afternoons. We also began the process of trying to get him started on Applied Behavioral Analysis therapy. This one was much more drawn out because we had to find a program we liked, have them do an initial evaluation, and then get their reccommended treatment plan approved by insurance. We fought this battle for almost four months until we were finally able to start him in ABA therapy for a half day, five days a week. During that four months, he attended the ECSE program and seemed to be doing pretty well. They had began trialing him in the general education pre-kindergarten class and ended up moving him in ther permanently. They almost weren't seeing any of the problem behaviors at school anymore, but we still saw them at home. We learned that in the GenEd PK4 class, he was there for recess and elective blocks (all the fun stuff that he liked) and none of his non-preferred academic tasks. n't ebeing pressed into doiThis is when a lightbulb went off for us. They were reccommending full-day PK4 moving forward, where he would be in a class of 20+ kids with one teacher and one aide. When he eventually was put into the situation where he might act out, they would most definitely not be equipped to handle it. After only a week of ABA, we felt that they had a better picture of our son and a better plan to address his behaviors so we decided to make the move to full time ABA therapy.

Aside - I do feel like I need to say that the school district did the best they could with our son given the circumstances. I'm a public school teacher and have faith in the people that work within the system. ABA therapy is a specialized field and they just have more specific training that better equips them to address the kind of issues that our son has.

So now the issue we're presented with is the insurance battle. We spent a couple of weeks in limbo waiting for the full time ABA to be approved. Come to find out, insurance didn’t approve the increase for a myriad of reasons that culminated in saying he was making enough progress with his current time at the center. Insurance sucks. It’s so crazy that someone in an office somewhere gets to make that decision without even knowing my son. The broken health care system is a whole nother blog post in itself though. We’re appealing the denial and we’ll see how long that takes, but I’m not getting my hopes up.

All this to say - parenting is hard. No matter what. For me as a father though, a child with special needs is that much harder to parent just because I'm in unfamiliar territory. I've had my fair share of students that were part of the SPED program, but they come with a list of academic and behavioral accommodations so I know how to best teach them. It's almost liek anke an instruction manueal that's been created through trial and error up to this point. I"m'm in the rough draft stages of my son's instruction manual and it is rough. We're still learning about what makes him tick - the reason for his behaviors. Something that I've learned through this too is that one behavior can be a result of various stimuli, which explains why sometimes strategies work for one thing but not another time. It is struly exhausting and frustrating. I love this kid so much though. He is so intelligent, kind, and loving. He's fun, happy, and sillyfunny. It breaks my heart that life is going to be more difficult for him because of this diagnosis and that it will put a label on him that comes with all kinds of negative connotations and stereotypes, but I know that we're doing the right thing by getting him help this early. It's going to set him up for success in the future, even though it's hard right now and likely will be for a long time. I just hope that one day he can look back and see the reason for all thisthat, knowing that this has all been done out of love.

I'm so thankful to have my amazingly wonderful wife to walk through this with because this thing is not for the faint of heart and we do a good job of checking each other when one of us is at our breaking point. We're still learning new thingshow to navigate this whole thing and balance it with being good parents toraising our other two boys at the same timeas well. Again, not for the faint of heart and definitely not something to undertake alone. The occasional extra trip to the pantry late at night for a snack or the garage fridge for a fine pilsner after a particularly stressful day might make this line sting a little more eventually, but it's not a dad bod...it's a father figure.

[billgenbrough]

Run down of a week's worth of events.

This happened, like, early to mid November. I only remember that because I went to the orthopedist the Friday before Thanksgiving. But let's rewind a week.

As I have posted before on here, I get bugs REALLY bad during season changes. I mean literal invasive species hiding in my house, mainly my room (my mom thinks she found a nest of them in one of our bedding cabinets, but she won't clean out to verify this information).

I know you aren't supposed to kill stink bugs, but these suckers are terrifying. I'm like 90% sure these ones had been in my house for the last year, or at least since the spring, because they were MASSIVE, okay? Way bigger than normal. Loud, gross, and huge.

For like two months, I was using a sandal to kill them. Then the sandal went missing. So I got an old shoe.

Reader, there's something you need to know about this old shoe.

I had it since middle school — sixth grade, to be exact. Absolutely no padding in this fucker. Holes in the fabric inside to the point you could feel the foam sole.

Reader, I did not think about that.

I put this nine-year-old shoe on my hand. And punched my wall.

It hurt. Obviously.

I couldn't move my fingers for the rest of the day, but my mom was asleep because she had work, so I had no one to tell about it.

I told her when she woke up. She rolled her eyes and said she'd take me to prompt care if it was still bad the next day.

I continued on as usual. Unable to use my right hand. While being right-handed.

I went to therapy the next day. Couldn't even sign myself in because I couldn't curl my hand. My finger was swollen and purple. My therapist persuaded me to beg my mom to take me to prompt care.

So I go to prompt care. The nurse thinks I'm being dramatic. Could not give a fuck, called me dumb for punching a wall.

Then the doctor comes in.

Doctor is like, "Oh, it was a stink bug? Fucking yikes, man. Your hand looks pretty bad, let's do an x ray."

So I get the x ray done. Feels like my hand is about to break when the x ray tech is trying to make me do this one pose I told her I literally could not manage (I couldn't straighten my hand or make a fist, are you fucking serious right now).

Not even 10 minutes later, the doctor is saying my hand is fine, just a bruised bone. No way you developed four x rays in less than ten minutes, but okay.

So I got home. This was a Friday.

I get a call Sunday night.

Hey, man, we had, like, three people look at your x ray since Friday, and everyone is saying you fucked up your hand, so we're sending a referral to an orthopedist.

I was like... Well, fuck, okay??

So I schedule the appointment for that Friday because the orthopedist is only at my local office on Fridays, apparently?

I go to the orthopedist. He asks what happened. I tell him.

"I did the same injury 8 months ago, are you actually serious right now"

I was like. What?

Then he demonstrated. Pretended to punch the wall and talked through how he also fucked up his hand.

Then he was like, "Dude. Give me your hand."

So he starts checking the mobility in my fingers and is like, "This is literally fine. It's just gonna be sore occasionally for the next 6 to 8 months."

And then he asks me to straight my hand

And I do

And he's like

"You can hyper-extend your fingers pretty far, they're clearly not broken"

What. I can what

I leave the office confused as fuck. Embarrassed that this orthopedist literally thinks I'm dumb as fuck ("You can't even see tendons on an x ray, why would they tell you that you have a tendon injury" I don't know, man, they told me everything was fine, then changed their minds two days later). Frustrated that the hospital referred me to an orthopedist when there were no abnormalities in my x rays.

And also just really fucking confused what the Hell he meant by saying I can hyper-extend my fingers.

So I Google it.

Reader, this is literally how I found out, at almost 21 years old, that I'm double-jointed.

What the fuck

What do you mean I never posted the thrilling saga of Atlas Possibly Broke Their Hand

[awheckery]

so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

[mimzy-writing-online]

Writing A Blind/Visually Impaired Character: Canes, Guide Dogs, O&M

Wow, back in June I decided to take a few months break from blogging to recharge and focus on my mental health. About a month ago I began writing this specific post, slowly and in stages because of how demanding, detailed, and long it is.

I’m not sure when I planned to come back. I have about 200 posts with tags and image description in my drafts folder, waiting to be queued, but I wanted to finish this guide before I fully came back.

Come back with a bang, right?

But this blog, and specifically, my Writing a Blind or Visually Impaired Character  guide, has gotten so much traffic and support that I felt incredibly motivated to come back now.

So I finished the guide, and now here it is. It’s been a year+ in the making. Since the very beginning of this writing advice series about writing blind characters, I’ve promised to write a guide specifically about canes, guide dogs, O&M, and other accessibility measures the blind community relies on. 

In fact, if you look at my master post for this guide (now pinned at the first post on my blog) you’ll find that it was reserved as Part Four, even as other guides and additions were added over the last year.

In this post I’ll be explaining 

What Orientation and Mobility (O&M) is

How one learns O&M

About canes, from different types of canes and their parts, as well as how to use a cane. 

I will be explaining the sensory experiences of using a cane and how to describe it in narrative. 

I will include small mannerisms long-time cane uses might develop. 

At the very end will be a section on guide dogs, but this will be limited to research because I have no personal experience with guide dogs, being a cane user.

Disclaimer: I am an actual visually impaired person who has been using a cane for nearly three years and has been experiencing vision loss symptoms for a few years longer than that. This guide is based on both my experiences and my research. My experiences are not universal however because every blind person has a unique experience with their blindness

What Is Orientation & Mobility

Orientation and Mobility (O&M) is the specific skill of understanding and navigating the world safely and confidently with vision loss.

I’m going to quote Vision Aware’s specific definition [link]

"Orientation" refers to the ability to know where you are and where you want to go, whether you're moving from one room to another or walking downtown for a shopping trip.

"Mobility" refers to the ability to move safely, efficiently, and effectively from one place to another, such as being able to walk without tripping or falling on steps or elevation changes, crossing streets, and using public transportation

O&M can involve :

-learning how to use a cane, as well as what cane works best for you

-safely navigating obstacles with your cane, including stairs, ramps, elevators, uneven or curved sidewalks, through crowds, around furniture

-learning safe strategies for crossing the street

-planning routes to new or recurring locations

-using technology enroute, including GPS and apps like Uber and Lyft

-safely accessing public transportation

-how to ask for help when needed

-working with human sighted guides

A Note on the Blind Community and Their Relationship with Canes

The Perkins School for the Blind estimates that only 2-8% of the blind community rely on canes for navigation. The rest rely on remaining vision, guide dogs, and sighted guides. Only about 2% of the blind community relies on guide dogs however, and to get a guide dog in the first place, a person must go through O&M classes and use a cane for six months before they can sign up for a guide dog.

What this means is that 90% of the blind community don’t use a cane.

I didn’t know this fact until I begun research for this guide, and that number astounds me. 

Truth be told, while I have navigated my life without a cane before, I can’t imagine going back to the way it was before I got it. Even if I only need my cane some of the time, I can’t bear to not use it in the situations I need it. Having a cane made my life a lot easier, a lot safer.

I don’t know what to attribute this number to.

I might attribute it to the concepts of invisible vs. visible disability, internalized ableism, or the feeling of ‘not being blind enough’ for a cane, as well as accessibility to the blind community and knowledge, and access to buying a cane in the first place. I could write a thing about it, but if I try it’s gonna be its own post.

Onward~

How Do You Learn O&M? How Will My Character Learn?

You will have to find an Orientation and Mobility instructor and have them personally teach you O&M skills.

The O&M Instructor is a sighted adult who has gone to school for a bachelor’s degree and gone through O&M training themselves while blindfolded, usually fulfilling a certain requirement of hours (one program required 400 hours of O&M practice blindfolded before you could become certified), and apply for certification to teach O&M.

(Or, as is the process to become an instructor in the United States, where I am from. Becoming an instructor would vary in other countries, I’m sure)

To find an O&M instructor, you would reach out to your local school or foundation for the blind. Finding your nearest school for the blind could be done through…

Google search

Your Ophthalmologist (eye doctor) referring you to a school for the blind

A Social Service Worker reaching out to you and helping you contact the school

Possibly your school (as in grade/primary school, high school, university) reaching out to the nearest school for the blind on your behalf.

Unfortunately, there is not an abundance of schools and foundations, so your nearest might still be a far travel distance. My local school is a 45 minute drive away. For some it might a few hours away. 

This is, again, a U.S. experience, because our land mass is spaced out, and something like a six hour drive feels like nothing to most people (although is highly impractical and very difficult to a blind person who cannot drive themselves), but in other countries a six hour drive would mean crossing several borders, and other countries have different social programs.

There is not a full and complete database of every available school for the blind either, no one website to find every possible option. For example, the school I went to wasn’t listed in most of the website resources I found, even though it has seven branches and locations. 

This is more a complaint at the real life struggle to find disabled services, that there are few comprehensive resources out there. If you ask me, it should be made significantly easier to find and access your local blind communities. Accessibility and disabled services should be easily available everywhere.

If your story is based in a real world location, googling ‘school for the blind (city/county/country)’ should suffice in finding the one most local to your setting.

What might a school for the blind provide for your character?

Well, on top of helping your character connect to an O&M instructor, a school for the blind might provide other rehabilitation classes and access to additional resources.

Those rehabilitation classes could include lessons on:

-Reading/Writing Braille & using brailling machines

-Technology classes for screen readers, magnifiers, etc on your computer and smart phone.

My local school has separate classes specific to Andriod, iOS, JAWS, Zoomtext Fusion

-Independent Living skills (cooking, cleaning, organizing, planning how to get groceries and medications)

-Self Improvement (dancing, art, music, self defense. These were classes my school taught)

The additional resources form these schools might include- 

Referrals to counselors for coping with vision loss

Access to their audio-book and braille library

Access to magnifier devices, brailler machines (think of a typewriter for writing braille)

Some schools also offer grade-school or high-school education, meaning blind children/teens learn there instead of a mainstream school.

Some schools have lodgings for clients to stay at while going through rehabilitation, especially if the vision loss is sudden and severe. They live on-campus and take part in classes. Other schools only have day classes offered and you need to find transportation for every visit. Many schools might have a rehabilitation specialist or O&M instructor visit you in your home.

My local school did the last two. They had on site classes, but the school is a 45 minute drive from me, so I only visited a few times. They were able to send an O&M instructor to me. 

On Wednesdays at 3 pm she would drive to my house and give me lessons on using my cane. Those included her driving me to different locations to practice certain skills (like using stairs and escalators at the mall, or crossing a moderately busy intersection, or visiting a bus station to practice boarding a bus safely and communication with a bus driver where my stop was).

She also brought multiple different types of canes for new students to try out and determine which felt best for them.

The Many Types of Canes

Long Canes are used to sweep the immediate area in front of the cane user as they’re walking. This is the cane type that the general public is most familiar with seeing. There are several sub-types of long canes. They can also be called white canes or probing canes.

[Image Description: Man in business clothes traveling on the side walk with a white and red cane. End Image Description]

White cane can be a misnomer for two reasons: One, the concept of the standard cane for the blind can look different in different countries. In America, the standard is white with a red tip. In some countries the standard is an all-white cane. In some countries an all white cane might mean the user is blind while a white cane with a red tip means the user is deaf-blind.

Two, some companies like Ambutech allow customers to customize their cane colors and tips. Example: Molly Burke’s hot pink cane. My white cane with a purple tip. An all black or all sky blue or all red or all purple cane. A black cane with a blue or purple tip. Ambutech also allows customers to request neon-colored reflective tape to make their canes more visible at night.

Probing cane is not a term I’ve personally heard before, but it is a term Vision Aware uses on their website.

There are three main types of long canes:

Non-folding Canes: a cane that has no sections, cannot be folded or collapsed.

[Image Description: stock photo of man in business suit with a non-folding all white cane. End Image Description]

Folding Canes: The cane has 3-6 sections depending on its height. The taller the cane, the more sections it has. The sections are separate pieces that are made to snap together and are held together by a strong elastic rope inside the sections.

[Image Description: a folding cane with four sections, white with a red tip, and a rolling marshmallow tip. End Image Description]

Telescopic Canes: in which the sections slide into each other, similar to a telescope/spyglass, rather than pulling apart and folding. The handle is the widest section, and the tip section is the thinnest.

[Image Description: Three stacked images of a blue telescopic cane. First is of the cane completely collapsed. Second is of the sections partially sliding out. Third is the cane sections completely out and locked.]

Beyond that is also the Identification Cane. The function of this cane is to visibly identify the user as blind. It’s not used for O&M the way long canes are, there is no sweeping out the next two steps. It can be used as a support cane, however. 

It’s appeals most to the elderly who not only make up a huge percentage of the blind community, but might also benefit most from having both a support cane and an identifier for their blindness, in case they need assistance. 

[Image Description: identification cane with curved handle. All white with red tip. End Image Description]

A note: From what I’ve heard in the blind community, some people prefer solid/non-folding canes over folding or telescopic canes. The reason for this is that solid canes transfer vibration better than folding or telescopic canes. It’s said that the more sections a cane has, the less precise the vibrations are. 

Some cane users train themselves to understand the vibrations of the surfaces their canes are touching. It tells them what kind of surface they’re on (wood vs. marble vs. concrete), if there are nearby objects to their cane. While I rely somewhat on cane vibrations to tell me what surface I’m walking on (more on that later), it is beyond my current O&M abilities to use cane vibrations to sense nearby walls or objects.

Cane vibrations are just an additional information-sense to add to the others in use, and extra bit of data input.

Parts of the Cane: Materials, Handle, Tips, Sections, Elastic Band

Material

The three most common types of materials used to make canes are aluminum, carbon-fiber, and fiberglass. Each material has some drawbacks and benefits.

The ideal cane is lightweight and durable. It should be strong enough to withstand hitting something solid without bending or splintering.

Aluminum is strong and durable, but heavy. If it’s damage, it’s more likely to bend than break entirely. A bend can be straightened out, but it takes considerable strength.

Carbon-fiber is lightweight and durable. It’s stronger than fiberglass, and it can bend out of shape rather than splintering.

Fiberglass is lightweight but a bit rigid. If it breaks, it splinters.

Handles and Elastic Bands

While some canes can have specialized grips (plastic, wood, corkboard) the most common handle material is a black rubber handle that is about ten inches long, give or take. In the previous photos you’ve seen, the canes have had black rubber handles.

Here is an example of a cane with a wood-mesh material used as the handle.

[Image Description: a four section white cane with a red tip and a orange wood mesh handle, with black elastic band attached. End Image Description]

The benefits of black rubber handles over others are that it’s easier to hold onto, especially if your palms are wet or sweaty, than a plastic or polished wood handle. It also wouldn’t show the indents or scratches from wear and tear daily use. I’m guessing that is cheaper to make on the manufacturing standpoint, and thus is conveniently the standard.

Pay attention to the black elastic band attached to the handle in the above photo. Notice how it has a tied off loop? That is so that when the cane is folded, that loop can be stretched over the folded sections to hold it together.

[Image Description: a four section folding cane folded up with the black band around them. End Image Description]

Additional benefits or functions of the elastic could be to use it as a wrist strap while using the cane, or hanging it up on a hook while not in use. I tend to have my cane folded up and tuck my wrist under the strap to hold it more securely while carrying it. Images of that ahead in my cane-isms section.

Cane Height

Ideal cane heights depend on the user. For most users, you want your cane height to be to your shoulder, give or take a few inches. You might need a longer cane if you are a fast walker with long strides, or a shorter cane if you prefer to hold your cane at a lower angle than is traditional.

What I mean when I talk about holding your cane at a certain angle is that the standard is to hold your cane handle in your dominant hand and position it in front of your belly button, moving it side to side with each step. Traditional grip methods are holding your hand palm side up with your cane in hand, or to hold the cane at the section joint closest to the handle with what is called the pencil grip, holding the cane like a fat pencil.

Depending on the height, a cane can have anywhere between three and six sections. Longer canes have more sections. The top section includes the handle, and the last section includes the stripe color (traditionally red, unless customized) and the tip. 

The sections of the cane are generally slightly reflective, regardless of color. If you hold a cane up to the light you’ll see tiny specks of light reflected back, almost like very fine, tiny particle glitter paint. This detail is important in cane production because it makes the cane more visible at night, especially if something like car headlights reflect off it while someone is crossing.

Additional visibility at night can be added by wrapping stripes of reflective tape along the shaft.

Cane Tips

There are several different tip options for canes.

[Image Description: four different types of cane tips on a blue background with labels. From left to right: marshmallow tip, ball tip, pencil tip, glide tip.]

[Image Description: a rolling marshmallow tip with a blue background. End Image Description]

[Image Description: Bandu basher tip with a white background. For anyone not familiar with the name, the long, curved cane tip that looks like a hockey stick. End Image Description]

Some of these tips are better for the tap-tap method of cane travel, as in tapping the spots where you plan to step. They can also be used to feel out the shapes of objects, stairs, etc. 

marshmallow tip, pencil tip, 

They should not be scraped over surfaces, the tips will wear down much faster than they should. There are better tips for rolling over surface

Some tips are better for the rolling method of cane travel, which is the method I use. They aren’t great for tapping, but it can be done in a pinch. 

rolling marshmallow tip, ball tip, glide tip

The Bandu Basher tip, the hockey stick shaped tip, is best for hovering an inch off the ground and lightly tapping objects. It could be tapped. It should not be scraped over the ground like a rolling tip. It hovers.

After enough use, the tips will wear down and need to be replaced. The part of the tip that has the most contact with the ground, usually the edge of the shape, gets scrapes, sands down, and eventually begins to look like it was shaved off while still having bits of plastic still gripped to it.

Never fear, cane tips can be removed and replaced when they wear out, replacing the whole cane is not necessary.

Some tips slip on or twist on. Others hook on. By hook on I mean that the elastic that keeps the cane sections together also has a loop at the tip end that a hook onto and stay held into place. Look back at the photo of the rolling marshmallow tip and you will see the hook that attaches to the black elastic.

Cane tips sell for about 5 - 10 U.S. dollars, plus shipping, so it’s advised to buy several back up tips with your cane. I replace my rolling marshmallow tips once every six to twelve months. I don’t know if that’s considered too much or too often. The last time I needed to replace mine was June 2019 (It’s July 2020 at the date of writing this, but I’ve hardly left my home for the last six months because of COVID-virus related quarantine/social distancing.)

Sensory Details/Describing What Using a Cane Feels Like

Every surface type feels and sounds different when tapping or rolling a cane over it. It’s this difference that tells us a lot about our environment.

It tells us when we stepped off the side walk onto the grass, when we’ve walked inside because the concrete changes to wood or carpet flooring. These little details become trail markers too, useful for places we anticipate traveling to a lot.

Example: A week before every semester in college, I would travel to each of the classrooms and learn necessary routes. I learned that certain paths had giant cracks in the sidewalk that would be distinct enough to use as a trail marker to where I was on a path, or that certain paths went from cement to gravel, or cement to brick.

Carpet: The sound is very soft, and if you’re rolling your cane across carpet it sounds like a quiet swish-swish-swish. Tapping sounds depend on how thick the carpet padding underneath is, the thicker the carpet the softer the sound. If there’s a lot of padding then taps don’t make much sound, but if the padding is thin or underneath the carpet is tile or concrete then you hear a louder thudding tap. It’s still pretty quiet. If you’re rolling the cane you would feel a little bit of drag, the cane moves slower over the carpet. The thicker or shaggier the carpet is, the more drag it has.

Wood floor: Cane tips make rumbling sounds when rolling over wood floors. The smoother the wood, the less it rumbles. There’s a little vibration moving from the cane tip, through the cane and into your hand as you roll over wood planks. Very small. The more sensitive you are to vibrations, the more you feel it. Tapping makes hallow, thudding sounds on the wood. Sometimes they sound a little snappish if you’re tapping harshly. You feel stronger vibrations when tapping. Older wood feels softer, with more give. New wood is stronger, more vibrations in the cane.

Tile:It depends on the size of the tiles and the wideness of the grout lines, but it’s not a pleasant feeling. Tiles have grout lines, which are little divets between the tiles. The smaller the tiles or rougher the grout lines are, the more the cane vibrates in your hands. Every bump is felt running from the cane to your hand. The sound is a little grating too. Imagine fifty sets of stiletto shoes walking on tile, that’s what it sounds like when you roll your cane over rough, small tiles. Larger tiles with smoother grout lines aren’t so bad. Tapping the tile with your cane sounds like one really loud step of a stiletto heal, one step for each tap. Tile floors are usually found in bathrooms, kitchens, and industrial locations where the room is going to have harder walls (more tile, concrete, etc) and few furniture, so the room echoes more.

Linoleum: is a smooth even surface. It feels like your cane is gliding when you roll it, barely feeling any vibrations. The rolling sounds are very soft because of the lack of bumps, however tapping sounds are a bit louder. Not as snappish as tile or marble, but almost.

Marble: is similar to linoleum in its smoothness. Your cane glides when rolling. Tapping sounds are sharp. Because marble floors are common in high end malls, luxury homes, and fancy office building entries, places that usually have high ceilings and hard walls with minimal decorations and minimalist furnishing, those sharp tapping sounds may echo. Assuming there isn’t too much noise and the environment is relatively quiet.

Concrete: (I’m referring to concrete found in parking garages and industrial buildings, not sidewalk) It depends on the age of the concrete and how it’s maintained. Old concrete with lots of cracks and mini-craters feels very different from smooth concrete that was set less than a year ago. With old concrete there’s a rattling sound as your cane tip rolls over the bumps and those vibrations travel up your cane. New concrete can feel similar to marble or linoleum. The taps are loud thuds on dull concrete and sharper on new concrete.

Sidewalks: are made of concrete, but in my experience they feel a little different than the above example. Sidewalks have a grittier surface, they’re slightly rougher, more dry. There’s a bit more rolling cane vibration with sidewalks and the taps have more of a thud sound. And because they’re outside, you’re unlikely to hear any echoes unless you’re walking in an alley or between buildings.

Asphalt: is one of the worst surfaces in my personal opinion. Asphalt is the material used in roads and it’s made to be rough and gritty so that car tires can grip onto it and not lose traction while driving. The older and more damaged it is, the rougher it is. Because it’s rough the vibrations are much stronger, sometimes irritatingly so. I can’t roll my cane over asphalt because the bones in my hand can’t handle those kinds of vibrations, so I almost always use the tapping method instead. The sounds are gritty and dull. Unfortunately, asphalt is an unavoidable surface, unless you can find a way to never need to cross a street or walk through a parking lot.

Note: the white or yellow lines that have been painted into asphalt sometimes feel smoother because of the material they’re made of and because they’re added after the asphalt has been laid down.

Note: There’s something called tarmac which is similar to asphalt, used for a similar purpose, and more common in the U.K. (I believe) but I can’t say that I’ve ever knowingly walked on it so I have no personal experience to give you.

Gravel: Another one of those evil surfaces. Gravel is just loose rocks and they’re common in rural roads, driveways, some landscaping. The looseness of them is what makes them untrustworthy. It makes a crunching sound. If you roll your cane, you’re likely to end up tossing small bits of rock and dust here and there. If you tap, you’ll hear the crunch but your brain might not translate that into “it’s gravel” until you’re walking on it and only realize when you walk over it and the sharp rocks begin digging into your shoes.

Wood Chips: I don’t have any experience with this since vision loss and getting a cane, so I’m using my memories of being on the playground in grade school because the surface on the playground was wood chips. I’d say wood ships are a love child between gravel and wood floors. The surface is loose and rolling your cane over it would kick up loose chips and dust. It would probably sound similar to walking on sand I think, because wood chips are much softer than gravel but not as consistent as wood. If it’s rained recently, then the waterlogged wood chips sound even softer.

Hard Dirt: I’m thinking dirt roads here, which are a lesser evil to asphalt and gravel. They can be rough like all roads, but the material isn’t has hard and solid. Rolling your cane will kick up dust on a dry day, but if it rained a few days ago you might hear a soft crunch as you roll over wet dirt. Tapping will have a very soft thud.

Soft Dirt: Think gardening dirt. Because it’s so soft, it makes very little sound and is easily kicked up. There’s a bit of drag, about the same or slightly more drag than grass or sand. Tapping has almost no sound but you might feel a slight give as your tip lands in the dirt, a slight resistance as it sinks in.

Mud: Yuck. I’m imagining this getting in my cane tip and how gross it would be after. Sound and feeling depend on how wet the mud is. Wet mud sounds slurpy. There’s more squish if you roll or tap your cane. Your character might not identify it right away until their shoes begin slipping as they walk over the mud. This is a personal experience. Drier mud sounds soft and feels almost solid underneath your cane. Wetter mud has more drag for a rolling cane. Muddy areas are also generally uneven because top soil has been displaced, so muddy hills and fields have unexpected but usually subtle changes in elevation.

Puddles: have both a slurpy and splash-splash sound. The slurpy sound is more common with rolling cane techniques. The splash sound is more common with tapping. The deeper the puddle, the louder is sounds and the more drag you experience. I am not fond of this texture/experience.

Snow: I have zero experience with snow since the development of blindness. So no experience of what it’s like to walk through with a cane. This is something I hope a blind reader can inform me on so I can edit this at a later date. My best guess is that it has a soft crunch, softer than the crunch of shoes in snow. A lot of drag too. Rolling through snow would probably be near impossible, especially if it’s deep snow or hard packed. Again, my best guess. The last time I experienced snow was when I was twelve.

Grass: One of my least favorites personally. Too much drag. Worse than shag carpeting. It’s very soft and doesn’t make much sound either. Like a crisp crunch you can barely hear. If the grass is wet or frosty you hear it a bit more crunch.

Surface with fallen Autumn leaves: Leaves everywhere! This is a bit dependant on whatever surface the leaves are on. It would soften the sound of cement, but there would be a louder crunch on grass. If the leaves are big and very curvy/pocketed then they’re easy to push aside. Smaller, flatter leaves don’t push as easily. The driest ones will crunch under your cane. It’s fun sometimes, if you’re the kind of person who likes stepping on leaves on purpose, but if you can’t see the leaves it might lose some of its fun and be more unexpected. 

Sand: I’ve never personally taken my cane to the beach, despite living so close to the coast. The reason is because beach sand is so squishy and loose that it’s already impossible to stay steady on your feet. The sand is always sinking under your feet, unless you’re next to the water line and the dampness has made it firmer. So a cane isn’t very useful to me at the beach. Not to mention that sand isn’t something you want inside your cane joints if you want the cane to last. Sand will erode and damage the joints, regardless of if they’re metal or plastic. If I were to take my cane to the beach, it would make the softest crunching-swishy noise of sand sliding over sand, similar to what your footsteps sound like on sand, but possibly even quieter because canes are lighter.

Side Note: My mother sarcastically asked about rolling your cane through dog poop or gum left on the floor. Can’t say I’ve ever rolled through it, so couldn’t tell you. Use your imagination I guess, Mum

The Invention of Tactile Paving

These are amazing! Tactile Paving are those yellow (or sometimes grey) bumpy squares you see on ramps leading into parking lots or when crossing the street. In 1965, Japanese engineer Seiichi Miyake used his own money to develop a tactile brick that you could feel even when walking over it with shoes, and he designed this because a friend of his was losing their vision and he wanted to help. These are amazing, and accessible to everyone, even the blind who don’t have a cane or guide dog. These are literal life savers. Before I got my cane, if I felt those bumps under my shoes I knew to immediately stop because I was about to walk into the road. Because less than 10% of the blind community uses canes or guide dogs, this is the most accessible form of blind aide available.

[Image Description: a yellow rectangle of tactile paving in front of a ramp leading into a parking lot. End Image Description]

Note: similar detail, most doors in commercial buildings (in my localized experience) have a metal plate on the threshold to hold the door in place so there are no cracks underneath. The metal scraping sound when you roll or tap your cane on it is distinct but temporary and non-repeating, so it’s a good indication that you’ve reached and passed the threshold.

Blind-isms

I have a section in this guide about blind-isms, but these ones are focused specifically on cane use.

-Do. Not. Touch. My. Cane. Don’t. Just fucking don’t.

-The above ism comes from the fact that our cane is our safety net, an extension of our body, our eyes, the one thing that makes sure we’ll get somewhere safely. For that reason, blind people hate having their canes (or their on duty guide dogs) touched by strangers, acquaintances, friends we’re not very close to, some family members.

Important Note: That is a universal thing for disabled people. Don’t. Touch. Their. Mobility Aides. It’s assault. Touching someone’s wheelchair or pushing them around without their expressed permission is assault. Moving their wheelchair while the user is currently standing is assault. (Most wheelchair users are not paralyzed, but they still need the wheelchair because of their medical condition, which is not your business to know). It doesn’t matter if the wheelchair is in the way, the disabled person needs it right there, do not touch it. Touching or grabbing someone’s support cane or their long cane is assault. Touching or moving someone’s walker is assault. Touching, poking at, or tampering with someone’s hearing aids is assault. Touching their oxygen tank or cannula is assault.

Back on topic-

-Idle motions with your cane while waiting in line. I often rest my chin on my cane or lean on it

-twirl my cane like a staff when I’m alone and no one can see. I would not ever do this in front of anyone because I don’t want anyone thinking it’s a toy or they can just touch or grab it. I’m just a little childish and bored sometimes and idle motions are a common thing for people with ADHD.

-When carrying my folded cane inside (like say a store) I hang it from my wrist by the strap.

-Keeping my cane within arms reach at all times, even in situations where I don’t need it currently. Example: if we’re doing a classroom assignment where I need to leave my desk, I know the classroom well enough to not use my cane, but I won’t leave it at my desk, ever. (This does not apply at home. And in the homes of a very few, very trusted friends I will leave it somewhere I deem safe.)

-Having a set, specific place in my home (living with my immediate family, who almost never have guests) for my cane. In my case, it’s the top of an antique dresser in the living room, across from the door. It has a little bowl for my sunglasses as well. If I move out and have roommates, my cane will be in my room.

-Love me a bag or backpack that has enough space to discretely store your cane, but most of my bags cannot do that.

-People with folding canes develop a muscle memory for folding and unfolding their cane, so they can do it without really thinking about it.

-Unfolding my cane: I hold the black handle between my thumb and palm with my other fingers folded over the remaining three sections, cane tip pointing up. I slide the elastic over the tip, loosen my four fingers and roll my wrist to the side. The red colored section unfolds first and snaps into place with its neighboring section. I roll my wrist in the opposite direction so the next white section can unfold and snap into place with it’s neighboring section. Roll it back in the first direction and the third section snaps into place with the handle. My four section cane is now unfolded and straight.

-Sometimes I just grab the black handle and let the sections fall and unfold as they will, but this is less controlled and risks your cane bumping into something or someone.

-Folding my cane: I start with the black handle, lifting it up so the joints unlock. I fold it down, grab both sections in my hand and lift the second section away from the third and fold it over. Wrap my hand over all three sections and unlock it from the red section.

-Because I have a four section folding cane, the cane tip and the handle are on the same side while the metal joints are on the opposite side. Those metal joints are what my elastic slips over.

-A three or five folding cane will have the head of the handle (and its elastic) on the opposite side of the cane tip, and you will be folding the elastic over the cane joints and tip.

-A six section cane has the tip and handle facing the same direction like the four section cane.

-People with non-folding canes like leaning their canes up against walls and other objects when not in use. Corners are popular, the corner of a desk up against a wall too.

-But oh god the frustration when the cane randomly rolls out of place and hits the floor, it’s a combination of “Not again” and “did that really just happen” and “you had one job. one job.”

-Sitting with our cane tucked between our legs. Picture a bit of man spreading, the cane tip leaned against the side of our foot to keep it stable and the cane leaning against our shoulder or opposite knee, possibly also held securely with our fingers too.

-The no-manspreading alternative of that is with the cane leaning against our shoulder, cane tip resting on the toe of our shoe or the outside of it, held securely with our fingers or our arm wrapped around it, elbow hooking it.

(Okay, a while back I was looking for photos of someone using a cane to use as a reference for drawing Ulric. I only found three, and two of them were Daredevil promo photos. Which, no offense to Charlie Cox, but he is not blind and he does not use a cane in his daily life, he does not have that relationship a blind person has with a cane and the concept of a fifth limb, and it shows. So the photos were stiff and unusable, so I had to like use several photo references of different poses and Frankenstein them together to get what I wanted.

And I still haven’t finished the painting... fuck)

-In a car with a non-folding cane: 

-Right passenger seat- The cane tip goes all the way into the corner of the foot well to the right of my feet, with the handle resting over my right shoulder or on the seatbelt. It pokes a bit past my headrest. The longer the cane, the harder it is to tuck into a car.

-The U.K. / Austrailian / New Zealand / Japan version of this (because they drive on the left side of the road with their drivers seats on the right side of the car) it’s like this: Cane tip in the foot well to the left of my feet, handle on my left shoulder or on the seatbelt.

Backseat: the absolute worst. There’s less foot well room, and if you’re in a sedan there is almost no room behind your shoulder for the handle. I position my cane diagonally with the handle on the shoulder closest to the door and the tip next to the foot closest to the middle. 

-For this reason, no one with a non-folding cane will want to be sitting in the backseat.

About Guide Dogs

While my knowledge of guide dogs is limited only to what I can research and not personal, I will give you some basic facts and practical knowledge from said research.

Guiding Eyes for the Blind estimates that there are 10,000 guide dog teams out there in the world. That makes up 2% of the blind and visually impaired community.

Guide Dog Training

Becoming a guide dog is the most difficult form of dog training there is. The majority of dogs who enter guide dog training wash out and either become family dogs or go into a different type of service dog training, like medical response or PTSD/anxiety response, or possibly become therapy dogs, which is a career altogether different from being a service dog.

Guide dogs go through two or three years of training, which includes puppy training, basic socialization, proper behavior when on duty and actual guide training. Most service dogs only go through a year to a year and a half of training before they are partnered with a disabled handler.

Between the cost of training, the cost of housing and feeding the dog and the cost of vet bills from birth until being partnered with a blind handler, the overall cost of a guide dog is something like 30k to 40k. While most service dog training organizations require handlers to fundraise and pay for the cost of training (usually something like 15-30k), guide dog organizations give their dogs to qualified blind clients for free. These organizations pay for the dog costs through their own fundraising and charities. Fortunately for these organizations, guide dogs are a highly respected field and have a lot more charity directed their way, while other service dog types have less public interest when it comes to charity.

Guide Dog organizations have an application process, requirements, and a wait-list before you can be partnered with a guide dog.

Requirements to get a guide dog are (usually) as follows: 

Must be legally blind (as in not visually impaired, but legally blind) and have had at least six months of O&M with a cane and demonstrate enough O&M stills to navigate by oneself. They also require you to be responsible enough to independently care for a dog, able to keep up with training and retraining of the dog, as well as financially able to handle food and vet bills (which are at least a few thousand dollars every year).

The reason for cane training before getting a guide dog is because the dog cannot do everything for you. You, the dog handler, are responsible for knowing where you are and how to get where you need to be.

The dog can’t read stop signs or tell when a light is green or red, nor do they have GPS to find a brand new location nor can they learn that route on the first try, nor will they know exactly where you want to go when you say “Starbucks” or “library” or “school” or “mom’s house” and guide you all by themselves. That falls on you, the dog handler, having enough orientation and mobility skills to know when a street is safe to cross and knowing how to learn new routes and how to keep on route and make sure you make the correct turns. A guide dog can’t communicate with bus drivers for you either, they don’t know which number bus to use or what stop to choose. That falls on the blind person’s own skill.

Other Guide Dog Resources

Molly Burke is a guide dog user and has made several videos about what kind of work guide dogs do, her personal experience being a guide dog user for over ten years, how she got a guide dog, specific commands, unique experiences with things like travel, etc. She has a playlist all about guide dogs, but here are some of my favorite videos.

How Guide Dogs Guide A Blind Person

Guide Dog User Answers the Most Googled Questions about Guide Dogs

How I Met My First Guide Dog

Final Thoughts:

There is a lot more to be said about Orientation and Mobility, such as:

How do you safely cross the street with a cane?

How do you learn new routes?

How does getting a cane significantly change your life?

How do family, friends, and strangers react to you “suddenly” having a cane?

I could also write a ton on other tools the blind community relies on so strongly, such as screen readers, magnifiers, etc. In fact, I originally promised to include those in my master post when Part Four was titled  Part Four: What Your Blind Character Needs to Survive and Not Die. However, this guide is ages long and it feels better to focus on this specific topic for here.

Did you like this guide?

Consider checking out my other guides, links of which can be found on the master post here.

Follow my blog, I write and curate writing advice guides outside of blindness, I reblog writing memes with image descriptions, reblog soothing aesthetic photos with image descriptions, talk about disability, lgbtqa+ issues, ableism, and mental health.

If you want to further support me, this is the link to my ko-fi (however there is no such requirement nor pressure to do so, and please don’t worry about it, especially if you are in a financial situation that can’t afford it)

[pointatthesky]

Hello again, Hell. How're the devils doing?

Some of you know that three weeks ago I got fired. Nothing personal - the company wanted to save money and thought there was an awful lot of people in the office in the afternoons when very little happens and cut four positions.

About six months ago a friend with autism 'confessed' (?) that she recognised some autism traits in me and asked if I'd considered getting that checked out. ("Don't take this as an insult!" Sweetie, if I thought it insulting I don't think we could be friends, but here we are)

I thought now would be an ideal time to do that.

Also because such a diagnosis could grant me what's called a Flex Job. A flex job is for people with special needs, either wheelchair ramp, braille, someplace very quiet or whatever. They might not work the full time hours, or need to be 'shielded' from certain things (triggers or whatnot) and this rest entirely on the employer, because the work they are able to do is worth the same as any other full time employee, so they get full time pay.

I went to the doctor and got a referral for a psychiatrist who might determine if I have autism or not. Today I finally got through to one on the phone and she read the referral and simply stated "I see you have schizotypal personality disorder. Autism is a symptom of that so I can't help you. Have a nice day. Bye"

Ma'am… Ma'am, can I get that on paper? Ma'am, what do I do now? MA'AM? I don't think the municipal unemployment office are aware of this!

I called my case worker right away and told her the situation, though.

But like… apparently I do have autism? I was not made aware of this. It was not explicit. How was I to know?

The road to flex job is gruelling - you have to prove that you cannot perform certain tasks, or work more than a certain number of hours per day without serious negative effects and that you NEED certain things/environments to function your best at work - but at least there are things I know about myself already that I hope can shorten that trip through Hell a little. I'm trying to steel myself up for a dance marathon to the Devil's tune until he decides I have no rhythm and kicks me out the other side.

[xxisxxisxxis]

Gateway Drug | Part Eighty-Four

Words: 4K

Warning(s): Drug abuse (Overdose), explicit language, suicide attempt

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Duff and I move like the speed of lightening, him getting his pants on and me just putting my panties on and his t-shirt that got pulled off, before we rush next door with Steven, seeing people scrambling out the door, into connected suites, flushing drugs, all while Sally and Slash are working on waking him up, smacking at his face, to no avail. 

"Wh-What happened?!" I ask them. 

"Someone fucking shot him up and he fell out." She states.

"Who?" I ask and she sighs. 

"Vivian, we really don't have time for questions, help me get him to the bath." She says just as I'm looking over her shoulder where we're crouched over Nikki, to see Sparkie, shock on his face. 

We make eye contact and I just know he did this. 

"Vivian!" She snaps and I'm back to reality, helping them to drag him to the bathroom all while Sparkie takes the opportunity to get out of dodge. 

Suddenly Slash starts crying hysterically, clearly drunk and under the influence of many different substances. 

"Slash, calm down." Sally assures him as we get some cold water on Nikki's body, Duff and Steven still slapping at his face. 

"Damn it, Nikki." Duff mumbles, trying to keep himself calm. 

"Slash," Sally repeats as he starts getting louder and louder to the point it's hard to focus on the issue at hand. 

She stands and goes to the bathroom door, and Slash stops crying in a second. 

"I'm sorry to knock him out but the last thing we need is to get hysterical over this, we can get him back if we try hard enough." She assures us. 

After another minute and nothing's changing, I get uneasy. 

"The ambulance is on the way." I hear someone say over the noise of the running water and the blood throbbing in my ears from my mind racing.  

My heart feels like it's about to burst, my lungs feel flat, like they don't have the muscle to expand and let me catch my breath.  

Duff's t-shirt that I'm wearing is soaked with freezing cold water, Nikki's grayish-yellow skin now blue…  

Steven tries to knock him awake with his cast--from an injury he'd gotten earlier this week--before me, Sally, Duff and him get Nikki from the cold shower and get him back in the living room floor, tearing at his shirt and the buttons fly off.  

"Holy shit." Steven says just under his breath as I go to start cpr but I'm stopping when my hands hit something like ice. 

I quickly see what it is and I nearly fall back.  

It's my crucifix that I thought I had lost when I left it in Duff's hotel room a couple months ago…

"He knows." I say it with a panic in my voice, beginning to hyperventilate. "Duff, he knows." 

Duff looks at me, confused and frantic before he eyes the crucifix and if he had time to think about it, he would. 

"Viv, just stay calm." Steven tells me as Sally starts pumping on Nikki's chest. 

"C'mon, Nikki," She pleads by the fourth round. 

Nothing. 

"C'mon, I'm getting tired." She states and Duff takes over while Steven waits by his head for any sign of life. 

"Nikki, I swear to God if you die," I threaten him, running my hands through my hair, tears streaming down my face as I look at the smidge of blood on his forehead from where Steven tried to wake him up. 

"Let me try," I sniffle as Duff continues chest compressions and in between rounds of compressions, I try mouth to mouth resuscitation. 

The more time that passes, the deader he looks. 

"He's not waking up," I tell them, my adrenaline starting to wear off a little. "Nikki's not waking up, what else do we do?" I refuse to give up, looking to them for plan B. 

"Shhit." Steven sighs out, sorrow in his quiet voice as he starts to pace. 

It's very evident they don't have a plan B as ambulance sirens wail in the distance, coming closer and closer at the speed of light. 

"We let the paramedics try to bring him back." Sally says, continuing CPR, and the thought paralyzes me. "And if they can't then…" 

She doesn't finish, as if not wanting to entertain the possibility of Nikki dying tonight. 

Within the next minutes, medics are all but busting the door down with a gurney. 

Duff pulls me out of the way and I await them to start CPR, or pull out a magical pill that they shove down his throat and he magically comes back to life. 

They check his pulse while listening to his heart with a stethoscope, and look at each other. 

"Call it." The first one sighs out and my reality is beaten into me with a two ton hammer. 

My body and mind disconnect, my heart wrenching in my chest as my soul screams out through my throat, struggling to get away from Duff, as I plead, "Nikki, don't leave me!" 

"This is Nikki Sixx, he's not dying on my watch!" The other medic snaps to the first one over my cries. "Grab some adrenaline!" 

"Nikki, I love you, I love you, please don't leave me!" I shriek, my throat raw as I claw against Duff, trying to get away so I can go to him. 

"He's been out for too lon--"

"He's not dying tonight!" He barks over him and reaches for their bag, uncapping a long needle and plunging it into Nikki's heart. 

Nothing happens. 

What my new normal is about to look like flashes through my mind and I can't bear to even imagine what living in a world without him would be like. 

"Vivian!" Duff screams as he, Steven and Sally scramble to pull me away from the balcony railing overlooking a thirty foot drop as I keep a white knuckled grip on the steel railing, trying to pull myself away from them. 

"Let me go with him!" I scream at them, trying to kick them away from me. 

Paramedic number one sedated me while paramedic number two shot another dose of adrenaline into Nikki's heart...he came back to life while I was subconsciously praying I'd lose mine.

When I wake up, my head's groggy, my heart hurts, and my body just feels heavy. 

I'm in a hospital bed, confused for a moment, until it all comes back to me in a sudden, thundering moment. 

Tears come to my eyes, panic kickstarting the pounding of my heart as I try to sit up. 

"Hey, hey," I hear my dad say, getting up from the chair next to the bed to see me, and I look at him, confused. "They called me a few hours ago he explains." And I nod, my lip shaking as tears steadily roll down my cheeks. 

"Is he…" I can't finish my question, scared of the answer. 

"They got him back." My dad assures me with a nod and relief floods my body. 

"Oh, God," I close my eyes and my dad hugs me tightly, my face buried in his shoulder. "Oh, God, thank you." I acknowledge God for the first time in a while, my heart tensing at the sorrow I was so close to facing in a reality where Nikki was dead. 

"I'll go tell the nurse you're awake, they wanted to ask you some questions." He tells me after a moment and I nod. 

He kisses my forehead and gives a reassuring smile before stepping into the hall. 

I wipe my eyes and a doctor is stepping in behind my dad in a matter of moments.

He asks me questions about whether or not I've been suicidal in the past, if I'm still taking my antidepressant...I just say, "I've never tried to kill myself, I've never thought about it" and "No, I'm not on Nardil anymore, it made me worse." 

He decides my attempt at hurting myself was a spur of the moment panic, not a contemplated plan come to fruition at unlikely timing, and with a referral to a new Psychiatrist, they let me out of the psych wing of the hospital. 

Steven, Slash, and Duff are waiting in the waiting room of the E.R., and when we get down there, Duff sees me and stands up, stepping to me slowly before quickening his pace, wrapping me in a vice grip of his arms when he gets to me...I feel a few of his tears against my temple as he holds me. 

When we pull away, I look at my dad, and he looks away from me for a moment, eyes on the floor, brows furrowing slightly…

"I'm just gonna go home with my dad for a few hours." I tell Duff quietly, wiping my tears and he does the same, nodding. 

I give his hand a squeeze before stepping to Steven and Slash, who're both standing hesitantly...guilty expressions on their faces. 

"We're sorry for scorin--" I shut Steven up, hugging him to me and he squeezes me. 

"You could've ran like everyone else but you didn't." I point out, my voice hoarse from screaming during the night. "He probably wouldn't be here without you caring in the first place, so thank you." I add, looking at him, his tired eyes. I don't think he's slept at all. 

I hug Slash next, feeling sorry for him since he and Nikki are like brothers at this point. 

"They said he should be alright." He tells me. 

"Dad told me." I reply. 

"It used to happen to me all the time." He says next. "I just didn't think it'd happen to him like that." He adds. "That bad, I mean." 

"He's sick, Slash." I repeat Duff's words, finally accepting the fact that Nikki really is sick. "He's just sick." 

I finish saying bye and me and dad make our way to his car, and he fumbles in his pocket for the keys, getting it unlocked and I get in, staring at the windshield. 

Dad gets in next and shuts the door, completely silent. 

"It's been happening since September." I tell him, lowly, and something tells me he knows exactly what I'm talking about. "Me and Nikki separated after the Vanity thing happened in July and Duff and I started seeing each other in September." 

"Does he know?" He asks and I sigh. 

"I didn't think he did, until last night." I reply, feeling ashamed, sniffling.

"Can I tell you something I haven't told anybody before because your mother swore me to FBI level confidentiality?" He asks and I nod as he hands me a paper towel from his pocket. 

"Your aunt Lily didn't get into heroin from her boyfriend she was head over heels for, they did it together, but he's not the one that introduced her to it." He admits and I furrow my brows. "Your mother was on methadone for part of her pregnancy with you." 

"What?" I nearly snap out, shock shuttering everything I've been taught my whole life. 

"She got untangled from that web by the time you were born because she wanted to be better for you, and that's why she's always been so hard on trying to have you make the right choices, she just didn't want you to end up like her, and when Lily kept struggling with drugs over the years, she felt like it was her fault because Lily grew up knowing Charlette was on it and she felt like she was the one who brought her baby sister into all of it--even though your mother was clean years before Lily even touched it. Then you and Nikki getting engaged, she just…" he trails off, sighing. "...I don't know, she just has her own demons she fights with, still, I guess. But she does love you, Vivian. And everything she's done has been to try to protect you from making the same mistake she did--even if it wasn't worth the emotional turmoil you went through, and there's no excuse for it. And I know I didn't protect you as much as I could have from her, as much as I should have, I was just used to being with her for so long...I took things with a grain of salt, and I wasn't thinking that you were too young to understand that you just needed to do that with her sometimes. Even now, when she drives me up the damn wall, I still find some good in it, because I remember that it can be so, so much worse. She was so much worse at one point." He informs me. "My point is, don't be so hard on yourself. You had an affair--God doesn't hate you for it, you're not a bad person or a sorry excuse of a woman or any less of a Christian. You're human. God is well aware we are all human and don't make the best choices sometimes. And given that I've been you before, married to what seems like somebody you love one day and then the devil the next, I can see why you wanted something that wasn't weighed down with the burden of a goddamn demon like heroin." He adds and I try to blink back more tears. "So the question is, now what?" 

"I don't know if I still want a divorce." I confess, rubbing my lips together. 

"You think?" He asks, a little smile on his face. "You tried to throw yourself from a two story balcony so you wouldn't get left by your momentarily dead husband, and you think you don't want a divorce anymore?"

I find myself chuckling at his point, wiping my tears again. 

"I just want to get him back, Dad. The old him, because I feel like I've been married to a stranger."

"I think you need to go get help for yourself before you start trying to help him, though." He tells me next, reassuringly patting the crown of my hair. 

"Okay." I nod and he reaches over and hugs me, kissing my hair before pulling back, cranking the car, sniffling. 

"Alright, now, you're getting me teary eyed, you gotta stop that." He tells me and I laugh, just as a radio announcer states, "Last night, rock n roll bassist, Nikki Sixx, died of a heroin overdose at the Frankli--" my dad quickly cuts it off.

"I just wanna go home." I mumble.

"Alright." He replies, putting the car in reverse. 

"I mean home-home, Dad." I clarify and he looks at me. 

Mom was off at the women's Christmas dinner for church, so it was a perfect opportunity for Dad to have mercy on me and bring me back to the house I grew up in--that I hadn't step foot in for six years.

"You still haven't painted over that?" My finger traces over the measurements notched into the doorway of our living room. 

"Your mom wants me to, but I'm not." He replies, putting his keys on the counter. 

"Your mom won't be back for a few more hours. Why don't you go get some sleep that you haven't been induced into?" He suggests and I nod. 

I step into my old room, nothing's been touched. 

Dust has settled over old books, my desk, picture frames I didn't take with me...my bed is still unmade, exactly how I left it. 

I get on the mattress, laying my head on the pillow, smelling the perfume I used to wear in high school.

I turn over and stare at my window, remembering all the times Nikki's climbed in to see me, and helped me down when I was sneaking out. 

All the times Tommy would toss forbidden records up here for me to listen to when my mom wasn't here and the times my dad would help me out and hide them in his own stash of Charlette-band music. 

I miss being a teenager. 

I chew on the inside of my lip and look up at the ceiling, closing my eyes for a second. 

I end up falling asleep, waking up to a single knock before the door opens. 

The figure in the doorway is tall and lanky and at first I think it's Duff until I realize it's a brunette, his hair longer and more curly than Duff's. 

"Hey," Tommy lowly starts, and I hear Heather downstairs laughing with my Dad. 

"Hey," I sit up and he sits down on the bed next to me.

"So, I heard about Sixx." He tells me, slightly awkward, rubbing the back of his neck. 

"Everybody's heard about him." I mumble. 

"...I heard about you, too." He adds and I look at him. "I talked to Steven and Slash." 

"I'm fine, Tom--" 

"--Fucking knock it off, Vivian, damn it." He sighs out, standing back up, rubbing his face. "You're not fine. If you were fine you wouldn't have tried to do that." 

"I'm depressed, Tommy, I think everyone freaking knows I'm depressed, and I've been depressed for years now, I'm not suicidal but I'm not the most mentally stable at the moment and I panicked in a stressful situation and did something without giving it a second thought." I argue, my voice shaking. 

"Well, why not? Why not give it a second thought or something? You're not even together anymore." 

"Because it's him, Tommy, that's why." 

"You're not even together anymore, Viv--"

"--He's been all I've known for the past six years, Tommy, you can't expect six years of everything together to go away just because he fucked up." 

"What about us, huh? Me and Vince and Tansy? We've been friends for years. You and me have been friends for nearly twenty years, Viv, and you were about to make all of  it go away just because he fucked up." His voice cracks and I breathe out, my eyes watering as a result of him forcing back tears, rubbing his eyes. 

He plops back on the bed, and buries his face in his hands, his elbows on his knees. 

"I knew this would happen." He tells me next, sniffling. "I knew this would happen, and that's why I didn't want him going anywhere near you because I knew somehow, someway, he'd fuck you up, and he has. And I have, too, because I fucking let him." He adds, exhaling. "I know you don't want to live without him, but I can't live without you. And I know I've done a lot to push you away and I-I've taken his side over your's on a lot of shit but, Viv, you can't just decide to leave me without telling me, without giving me a chance to say 'goodbye,' and you can't…" he trails off, sniffling, quickly rubbing away at his eyes to block his tears from falling. 

I don't say anything, because I don't know what to say. 

I just wrap my arms around him, my cheek against his shoulder, my eyes closing as he starts crying quietly. 

I rarely saw Tommy cry, the last time I'd seen him cry until then was when Razzle died…I don't know if he was crying over Nikki nearly leaving us, or me, but he didn't brush it off. He just sat there for a few minutes and let himself actually feel stuff. No drugs. No alcohol. Just actually allowing himself to process.

The next morning I wake up in Tommy and Heather's spare bedroom, Heather on one side, Sharise and Skylar on the other…all of them curled up with me. 

It's heart warming knowing that I've managed to wrangle in some good, stable women into my life along the past several years. Making up for lost time with my mom and my aunt, I guess. 

I think back to what my dad told me yesterday about my mom. 

Who the hell would have ever thought that my mother would be into something like heroin at one point? 

Despite not being able to forgive her quite yet for everything she put me through, I know my dad was right: she was just trying to keep me in line so I wouldn't make the same mistakes she made. 

No wonder she lost her shit when me and Nikki went public with our relationship. All she could see was me losing myself in the money and access and swimming in melted black tar and China white. 

I scoot to the foot of the bed, careful not to wake the girls and I go to the hallway and grab their phone. 

"Hey, it's Nikki. I'm not here because I'm dead." Our answering machine beeps and I hang up, feeling a hole in my soul. 

At least he made it home alright, I tell myself, tired of crying. 

I hang up the phone and go to the kitchen to make some coffee, stopping by the counter to see "VIVIAN" written in big, black marker on a large manilla envelope. 

I furrow my brows and open the prongs, pulling the papers out. 

The top is labeled, "California Judiciary." 

[blindedbythedarkness]

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

[mental-health-advice]

Submission about loss and derealisation

I’ve always had issues with anxiety. It held me back for years, to the point where I got sick frequently. It got a lot better, and I’ve been doing well & been happy. However, lately I haven’t been feeling myself. I’m not sure when it started, but a while before I realized I felt this way I started smoking weed for the first time. Since the first time smoking I’ve smoked almost every night going on 2 months through a dab pen and an occasional joint. After a few weeks of smoking, my grandpa passed away. I’ve never had a death in my family before and even though his wasn’t unexpected, I was in shock. I had a hard time accepting he was gone. I didn’t cry. I just kind of shut it out. A few days later I started having cold symptoms. It escalated into a severe migraine that lasted almost a week, consistent that didn’t stop. I was scared I had something wrong with me. I got a shot and it eased away, but I still felt very down and lifeless. It’s now been a month later and it’s only gotten worse. The way I look at my life is different; it’s almost like I feel out of my body. I feel like I’m watching my life and not living it. My headache is still there faintly. I’ve still been smoking - because it’s such a habit. I had a horrible panic attack a few weeks ago smoking. I felt like I was hearing voices and hallucinating. I looked up how I felt and the symptoms of derealization matched so well I started freaking out. I was almost confused on what was even going on around me. I feel like I don’t even know who I am anymore. It feels like I’m in a dream, not reality. Just wondering if it’s the smoking, the stress from my grandpa, or if my anxiety has finally reached it’s peak and I’m going through a psychotic break?

Hey lovely,

It sounds like there’s been a lot going on. I’m sorry to hear that you’ve been having to deal with all of that. 

It’s good that you managed to identify that smoking weed might have been a trigger for not feeling yourself. Identifying the trigger is often the first step! A second step would be to figure out how you could go back to feeling yourself. Would for example stopping smoking be of help there? Is that an option to try, or do you feel like that isn’t an option right now? There’s no right or wrong answer, I’m just curious as to what is doable for you! 

Losing someone you love is honestly so tough. It comes as a shock, even when you’re expecting it to happen. I’ve lost a few people and each time it’s been different in dealing with it. That’s how grief works; it’s unique and raw. Some people cry, some people don’t cry. There’s no right way to respond and there’s definitely no wrong way to respond. 

Sometimes when we’re under a lot of emotional distress, this turns into physical symptoms. This could be why you got a cold and migraine after losing your grandfather, and why you’ve still been having faint headaches. You can treat those symptoms like you would physical illness, but that might not help completely. It’s better to work on healing from the emotional baggage.

And the question is- how do you heal after losing someone? Unfortunately there is not one answer. Everyone heals differently from grief. But there are some things you could try out. These things can be small. For example, I like putting up a picture. My best friend passed away nine years ago, and I’ve had a picture of her up ever since, both in my own house as well as in my room at my parent’s house. That way, wherever I am, she’s there with me. And if I want, I can sit with her, talk to her. I’ve also written a countless amount of letters. I always found it really hard that I couldn’t share things about my life with her anymore, so instead I’d write them down in a letter addressed to her. That way it felt a little bit like I was sharing it with her, even though it isn’t entirely the same. We have a page on grief that you might want to look through. There’s some helpful tips that I hope give you a starting point on your healing process.

I can imagine that you freaked out when you noticed that you were dealing with symptoms of derealisation. That must have been scary for you! Derealisation is a form of dissociation where you feel like the world around you isn’t real. This can range in intenseness, from feeling like you’re living in a dream to questioning everything you see. Derealisation, and other forms of dissociation, can happen for a variety of reasons. They can be caused by stress, they can be a trauma response, they can be from anxiety. It’s hard for me to pinpoint what could be causing it for you, since as you already say, there could be a few contributors. It might also not be one thing but more a combination of factors. 

When dealing with dissociation, grounding techniques can be very helpful. They can help to bring you back to reality, to feel less like you’re living in a dream. We have a page with grounding techniques. I’d urge you to try out different ones, so that you can find out which ones work for you. Since everyone is different, different techniques work for different people. My personal favourite is the following one, as it really requires you to use all your senses:

Describe five things you can see;

Describe four things you can hear;

Describe three things you can feel;

Describe two things you can smell;

Describe one thing you can taste.

You don’t have to deal with this all by yourself. Is there anyone you can reach out to about what’s been going on? A friend, family member, other trusted adult? You can also consider reaching out for professional help. I think that could be very beneficial for you. You can visit your GP / local doctor and explain to them briefly what’s been going on. They can then arrange a referral for you to a therapist, psychiatrist, counsellor, or other mental health professional. You can read more about getting help here. I hope this answer was helpful though!

Sometimes what seems impossible, is just hard. Love Pauline

[stanandcharleyandfriends]

COVID-19 pet boom has veterinarians backlogged, burned out

May 23, 2021 - Kelli Kennedy, Associated Press

Veterinary clinics around the country, including Brooklyn, have been overrun by new four-legged patients, adding to stress among veterinarians and their staff. Vets interviewed by the Associated Press have extended hours, hired additional staff and refused to take new patients, and they still can’t keep up. Burnout and fatigue are such a concern that some practices are hiring counselors to support their weary staffs.

Approximately 12.6 million U.S. households got a new pet last year after the pandemic was declared in March 2020, according to a COVID-19 Pulse Study by the American Pet Products Association. 

Meanwhile, fewer people relinquished their pets in 2020, so they needed ongoing care, experts said. And as people worked from home and spent more time with their pets, they’ve had more opportunities to notice ailments that could typically go untreated.

VERG (Veterinary Emergency and Referral Group), a 24-hour emergency and specialty animal hospital on Fourth Avenue in Gowanus, Brooklyn, reported a 40 percent jump in emergency care since the pandemic began. That’s also meant more pet hospitalizations, straining various specialties like surgery and cardiology.

“The demand continues to grow,” causing extreme weariness in a profession known for its big-hearted workers, said Verg’s chief medical officer, Dr. Brett Levitzke.

“Fear of the unknown with the pandemic leads to more intense emotions from our clients,” said Levitzke.

He’s seen expletive-laced outbursts and threats from pet owners, and also outpourings of love, with cards and baked goods. After the toll on the staff became noticeable, they hired a compassion fatigue specialist for support.

“Unfortunately, compassion fatigue, anxiety, and depression already plagued our profession, and the pandemic has certainly taken it to another level,” Levitzke said.

Vets were already struggling to meet the pre-pandemic demand, with veterinary schools unable to churn out enough doctors and techs to fill the void.

Banfield Pet Hospital, one of the largest national providers of preventive veterinary medicine, which has a location on Atlantic Avenue in Boerum Hill, had approximately half a million more pet visits in 2020 than in 2019. And its telehealth service more than doubled in volume from March through the end of last year.

During the gloomiest stretches of the pandemic, Dr. Diona Krahn’s veterinary clinic in Raleigh, North Carolina, has been a puppy fest, overrun with new four-legged patients.

Typically, she’d get three or four new puppies a week, but between shelter adoptions and private purchases, the 2020 COVID-19 pet boom brought five to seven new clients a day to her practice. Many are first-time pet owners.

Like many veterinarians across the country, she’s also been seeing more sick animals.

“Everyone is working beyond capacity at this point,” said Krahn, who added evening hours last year.

Krahn left her practice three months ago and now oversees nine veterinary and animal hospital clinics across Utah and Idaho under Pathway Vet Alliance. “All of my practices are booking out several weeks in advance.”

Thrive, another veterinary hospital primary care group, with 110 facilities across the U.S. but none in Brooklyn, reported a 20 percent increase in demand during the pandemic. Both repeated a common refrain — as humans spent more time with their pets, they were more in tune with their ailments — big and small.

“With COVID, a lot of people became powerless to the ones closest to them,” said Claire Pickens, a senior director at Thrive, “but the one thing they still had the ability to control was caring for their pet.”

Clinics have been forced to streamline, having patients fill out forms online or by phone pre-appointment because hiring additional staff often isn’t an option.

“The industry is growing at a rate that it can’t fill all the roles needed to keep up with the increased demand for services,” said Pickens.

Veterinary positions are projected to grow 16 percent by 2029, nearly four times the average of most other occupations, according to Bureau of Labor Statistics. Vet tech jobs are expected to increase nearly 20 percent in the next five years.

“We are still short staffed despite active seeking of additional staff,” said Dr. Katarzyna Ferry, Veterinary Specialty Hospital of Palm Beach Gardens.

[losingitinjersey]

Didja miss my face, ‘cause here it is in excess!  

I’ve been oh so happily living life at home with little erp.  I’m on day four of being solo with her  during the days before Kevin comes home at night (since my mom flew out from California the morning I went into labor 12/20 and stayed until Saturday 1/4, then Kevin went back to school Monday 1/6) and I’m absolutely positively loving it.  I always knew I wanted to be a stay at home mom because work, ugh, and home, yay, but actually getting to be responsible for a little one and cultivate my day around her needs has been both more demanding than expected but also more fulfilling than anticipated.  

The downside?  I don’t get to live this life for too much longer :(  My in-laws are arriving in eight days and staying for ten days then I only have six precious more days at home before I have to go back to work.  Insert all the grieving.  Thankfully, even though I’m going back to work it’ll only be in the office 2-3 days a week for six weeks and working from home the other days.  So it should be an easier transition back while still getting to indulge in more snuggle time.  

Amazingly, we found a woman to watch her out of her home with other children.  Erp will be one of the only infants so hopefully that means she’ll be focused on more than if there were a lot?  I don’t know, I’m extremely conflicted about the entire thing.  I don’t want to have to leave her, especially with a stranger.  Prior to finding this woman (thanks to a friend of a friend’s referral) we have been on five daycare waitlists with no openings projected until maaaaybe late summer so she’s literally my only option right now.  Thankfully, this lady is ridiculously cheap (cue suspicion) but she’s also 30 minutes away so that adds an extra two hours of commuting to my work day.  Uggghhhhh.  But, we do what we have to do, right?  All in all I’m glad we found a place we can afford and I asked for references which came back glowing, so that’s encouraging.  Hopefully it will just be temporary until a spot opens up much closer to home that’s actually a licensed, official facility (even though it’ll be double the cost).  The whole thing sucks and I just want to stay home with erp, but I’m the sole provider until we move for residency so I have no other choice.  (and even when we move, I won’t be allowed to stay home until maaaaybe he’s an attending physician which is still 6-8 years away. Boooooo)

My days consist of breastfeeding (30 minutes), feeding her a bottle (15 minutes), pumping (15 minutes) then putting her down for two hours while I either do productive things around the house or rest/nap.  Then doing it again and again and again.  She’s currently three weeks old today (and today is her due date!!) and she’s already been to the pediatrician five times to continue to check on her weight since she was dropping so much post birth.  As of two days ago she’s finaaaally back up to birth weight so at night instead of waking up every three hours to feed her (three hours from the start of her feeding so only like an hour and a half to two hours of sleep) we’re now allowed to go for five hour stretches!  Although, of course, that is if she’ll sleep that long.  Last night she decided she wanted to revert back to every three hours.  But still, progress!  

I’ve been spending my nursing time keeping very current with all your Tumblr happenings while also speeding through almost the entire six seasons of BoJack Horseman.  I’m enjoying it far more than anticipated since I usually don’t do cartoons, but also finding it waaaaay darker than imagined given its cartoon status.  I’m already sad I’ll soon be out of episodes but apparently the end of season six will drop at the end of January which I’m looking forward to even if I’m not looking forward to the end of January because it means I’ll be going back to work.  

Another thing I’ve been greatly enjoying while being at home is making myself breakfast every day.  Getting to spend the time making eggs, egg sandwiches, breakfast burritos, and anything else I can make over easy eggs on (since I was prohibited from eating runny yolk for nine months during pregnancy).  I haven’t started focusing on weight loss yet since I only recently have been allowed to do anything more than just rest.  The recovery process from this has been longer than anticipated since I expected once I got my body back to myself everything would be back to normal but that has not been the case.  I’ve been on two half hour walks so far and the first one, using a stroller for the first time, wiped me out for the entire rest of the day.  The second one, this morning where I used a baby carrier, went much better!  Hopefully I’ll continue to have energy to do even more things today.  I’m definitely encouraged that today’s walk was more manageable so hopefully I can start integrating these into my days even more and start getting back to longer walks.  I think I like using the carrier more than the stroller, but we’ll see what I end up using more.  Not having to worry about navigating the broken sidewalks with the stroller is definitely a plus.  I’m looking forward to when I’m healed enough to get back to weight lifting but for now, I’m glad I at least have the energy to walk and do all the things around the house. 

Thanks to @81welsh and @healthyontheinside for tagging me for SDS!  Here’s all the pics of my face for your viewing enjoyment.  Tagging @fitness-my-way, @abcd-adventures, and @dungeonsndiapers for your faces should you care to share!  

Also, huge news, I finally booked a haircut appointment for the first time in over two years.  I’ll probably only end up cutting off like two inches, but it’ll be exciting to have less dead ends, especially since I’m rarely taking the time to curl my hair (which hides the split ends) let alone shower and change my clothes.  Definitely living the scrub life up in here.  Although, every day is better and I’m feeling more able to integrate a self care routine into my days which include regularly showering and taking care of myself instead of just erp, Kevin and Saki.  

[crispturquoisewater]

This blog begins where the end of my journey should have been, but instead, it looks evermore likely, and evermore hauntingly, like it is in fact, just the beginning.

I had imagined that after four months of brutal illness, a multitude of infections, and endless other issues, that the turning of the new year would entail a welcome wave of freedom from hospital, god-awful doctors, and the hell that I had been staggering through in order to try and get better. Instead, the New Year has brought new challenges, the continuation of unreseolved illnesses, and even worse, a hightened sense of arrogance and narcissism from certain doctors that make this journey utterly unbearable.

Whilst writing this first post, I am passing an astonishing amount of blood, my back hurts, my bones feel like they’re broken they’re so painful, my feet are swollen and hard to walk on, and despite all of this, my doctor will not refer me to a nephrologist because it is “not his job”. I shall come to explain.

You wonder; when doctors took an oath to act within their patient’s best interest at all times, did they ever intend to adhere to that? Did they start off well and distend into a world of atrocity and cruel narcissism, acquiring a raw sense of vulgarity along the way? Either way, his leaving me to get sicker, in order to prove a point, is abhorrent and negligent.

Here’s what happened this week...

About 6 months ago, I started peeing large amounts of blood. Sometimes the urine sample would show infection, sometimes it wouldn’t. I got treated over 8 times with antibiotics, but after three months of repeated bloody urine, agonising pain in my back, swollen feet and a distended belly (in my opinion everything pointed to issues with my kidneys), and no infection showing, I told the surgery that I thought it was time that I was referred to a specialist - because constantly pissing blood is surely not normal. It’s beggars belief that after months of bleeding my doctors’ didn’t take the initiative to refer me themselves or even try to look into the issue further - instead of keep sending the sample off for cytology and getting the same results.

I got referred to Urology - even though the symptoms suggested it was my kidneys and the doctor actually asked if I had ever seen a nephrologist, they only referred me to urology - and after being throughly checked, the urology consultant sent a letter to my surgery and asked the GP to please refer me to nephrology, because the bleeding is clearly not right but is not coming from my bladder.

What happened next is, to say the least, astounding.

After spending a morning in hospital earlier this week (as many days are spent, now), the blood results showed that my white bloods, neutrophils and inflammation markers had raised from bloods taken 10 days before (I was in hospital for a ten-day follow-up because the week before I had developed a bad rash from new drugs I am taking for adrenal insufficiency). I said to the ER doctor that I had started passing loads of blood again that day (it comes and goes), and asked him to do a dip-test. He refused. He said that he didn’t want to give me more antibiotics and therefore, he didn’t want to test the urine to see if there was an infection. 🥴I don’t want anymore drugs. In fact, at this point, I think it’s probably dangerous to give me more antibiotics when they’re clearly not working. But surely, it’s not right for me to be passing so much blood and for the doctor to not even acknowledge it or try to find out what is going on. In fact, he didn’t even mention it in his discharge letter. I was happy not to spend any longer in hospital, but I left feeling slightly confused and, yet again, defeated. I find it bizarre that my bloods are showing an infection, along with bleeding profusely and yet I am told it is normal. I hate to dispute it, but I raised my questions, was told that the rise in bloods were due to my drugs (even though through multiple infections my inflammation markers have never risen and I know it isn’t my drugs because my dose has gone down, now up), and left.

If there is one way that this horrendous period of illness has made me feel, it’s defeated. As well as a feeling of being gagged and silenced and as though I could be screaming into the abyss, telling the doctors what is wrong, whilst being patted on the head, with a derisive smirk plastered across their faces, as they snigger and repeat, ‘there, there’. It’s been emotionally, physically and psychology horrendous.

After my midweek morning in hospital, I spoke to my GP that afternoon. I needed to ask him to make the referral to the nephrologist, as requested by the urologist in the letter. Nothing is ever done off the surgery’s own backs - even blood results that require attention takes for the patient to call up and prompt them to be looked at. I had called earlier in the week to ask for the referral to be made to the same hospital that I had been seen at for Urology, but I was told by the secretary that I would have to speak to a doctor for the referral to be made. Queue the 8am rush, and over 100 phone calls to try and get an appointment.

So, after three days, on the afternoon of the morning I had spent in hospital, my GP called me. Immediately, his tight, clipped tone was ready to bite. I explained that the Urologist had asked the surgery to refer me to nephrology in the letter and asked for the referral to be made. However, before I could finish my sentence, he told me that there was no letter on the system. He clearly had not looked. I explained that there was definitely a letter on the system because I get a copy and the secretary had printed their copy two days before, on the Monday. He looked again and miraculously, he found it, but not without making comment that it was in the “wrong” format. Of course, that was the reason.

I sat quietly whilst he read. And then, with an outraged scoff, he angrily spat that the referral should have been made internally and that it was solely down to “abject laziness” from the hospital that it had not been done. He told me that it was not his job to do it and, despite me bleeding heavily from what looks to be my kidneys, being in excruciating pain and feeling very sick, he told me that he would send the letter back to Urology and tell them to do it themselves. I was dumbfounded. But as ever, as with many who have had to undertake the constant battle of dealing with doctors through complex illness might be familiar with, I had to be the one to keep the cool head and stay calm.

I told him that when I had the conversation with my urology consultant, that she said it was for the surgery to make the referral, so I understood it was for them to do. He replied “absolutely not” before accusing the hospital of “workload shifting” and telling me that patients “choose to believe” that it is for the surgery to make the referral to another specialist. As it stands, I’m pretty sure that when one specialist has finished with you, the discharge letter has to come back to the surgery and the surgery has to be the coordinator, to refer you to the next specialist. But my GP was adamant that the hospital was lazy and useless and that they were the cause of any delay I might suffer.

Given how ill I have been, the amount I have been through, being immunosuppressed and any infection potentially being critical, I was flabbergasted that he was refusing to make the referral because he wanted to prove a point. I explained that whilst the two (the hospital and the surgery) disagreed, I was the one stuck in the middle whilst getting more sick. He said “I know” but told me that they had to learn to do it right.

I emailed the hospital the next morning, telling them his opinion and begging them to please make the referral. I followed up this email with a phone call on Friday morning, but as yet, have heard nothing. It’s always such a battle, and that, along with the already horrendous and draining existence of illness and constant hospital, makes everything so much worse. Multiple times I have told the surgery I am struggling with the stress of all of this, but despite offering help, or even acknowledging my concerns, they continue to play me like the ball against their two bats.

It’s Saturday evening and I am bleeding so heavily that I’m having to wear a sanitary as if I’m on a period. I feel sick. I’m in pain. And I have absolutely no idea where to turn anymore. Family have told me to go to ER but they will simply tell me that I’m waiting to see a specialist, which, currently I’m not because the referral hasn’t even been made.

The day after speaking to that GP, I spoke to another one. I told him that I needed my urine dipped. I handed in my blood-drenched urine and got told there was no infection but that it would be sent away to cytology anyway, just in case. I wonder what the protocol for these doctors is, when a young female patient is bleeding continuously, at times of no infection, with raised white blood counts and inflammation markers? Because all I am being faced with, is silence. I don’t even have the confidence to go to hospital anymore, because I feel as though I will be ignored.

And so, I am sitting here, desperate for the bleeding and pain to stop, but with no idea how.