No, people with disabilities* need my help! 

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This fool (with a summer camp’s worth of experience with disabled kids) with the “We need to have compassion and understanding for the socially inept because they might be disabled” rhetoric won’t give up. I gave it one last shot and told him as a disabled person, I ask for understanding that disabled people may not want all this defensiveness on their behalf. Further, the person in question might take offense to being labeled disabled regardless of whether or not she is. 

I realise I should have not gone back, as he’s some random ignoramus who won’t listen. But, it’s one of those topics I can’t hold back from. My impulse to argue against the ignorance drowns my desire to not stew over how ignorant people can be. 

Fb’ing past nine is a bad idea. On one hand I want to delete it from my phone again, but on the other I need the interaction. Sometimes it’s “interaction,” but meh. Sigh.
Now for a two hour overdue meditation video to help along the sleep medication. 

*I prefer disabled person, but it’s individual-specific: “This world we live in disables me by treating me like a second-class citizen because I have a few impairments…” And no, if help is not asked for (unless it’s something you’d do for anybody else, like holding open a door) then step off. 

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Ableist ableism policing

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I need to stay away from FB comments, far far away. I am compassionate to a fault, and CRPS has lowered my tolerance threshold. 

But, trying to justify and call for compassion over somebody’s rude behaviour because they might have a developmental disability is condescending and trivialising, especially if the person doing the calling does not have any such disability, nor did a person with a disability make such a connection. 

I can’t be coherent about it. This post explains my feelings so much better: 

“It makes me really uncomfortable when people (especially neurotypical people) try to explain away incidents of harassment, disregarding lack of consent or sometimes even assault with the “autism is to blame” mentality, particularly when the perpetrator’s neurotype is unknown and people are making huge assumptions often based on probably-false stereotypes.”

I may not have an Autism Spectrum Disorder, but I have enough problems functioning and people jumping on my case for not functioning the way they want for this to really piss me off. I try really hard to say and do the “right” things, to the point where I have stayed in unhealthy relationships. For random fb’er to say, “What about their feelings,” for people overstepping boundaries, regardless of the status of their neurons, is flat out egregious. 

Cheers!

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I ripped out this sock at least seven times and it still turned out wrong.

But, I knitted on and I’m a couple inches from being done. I don’t know if I will keep them since I know actual Vikings fans who will appreciate the colours. Maybe I could send the eventual pair to my aunt in Wisconsin who loves to perpetuate the Vikings-Packers feud with her husband. 

Since my doctors won’t give me any reasonable amount of pain medication, red wine is a swell, very short term stopgap. I don’t recommend it after hazelnut ice cream though. It’s pretty much the opposite of the recommended meat or spicy food, and it’s a bad, bad combination of flavours. Waiting a bit, however, makes everything in life a splendid combination of black cherry, plum, and raspberry flavours. Cheers to liquor stores!

Perfect Side Eye

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There’s a weird lump of bone on my toe joint that has to have been on scans, even if it was small, unless it rose up like a magical weed after the scans were completed. Wait, if a certain magical weed were legal for chronic pain I might be less bitter about medical professionals stringing me along. Ba dum tiss. 

I have all the symptoms of Hallux Rigidus now, which is basically arthritis. Except I’m crazy and my pain has nothing to do with what’s in my foot, but the nerves in my back. Right. Picture a perfect side eye and you’ll come a quarterway to how I feel about this. 

My evaluation appointment for the implant isn’t for a month. Am I really supposed to wait that long? Then again, if I let it worsen some more they’ll pay more attention. What self-approving medical professional wants to treat a smallish problem? 

I’m gonna look crazy if I go see Dr S again, or any of the other people I’ve seen about this, for that matter. Maybe I should go see my primary, and ask her what to do. I want to for the constant fatigue, anyways, and see if maybe I get a different response than “Walk around more.”

Tomorrow I have an appointment with somebody from an organization that helps disabled people get jobs, because unrelenting pain isn’t a disability. I can’t do anything distracting like read, knit, or write but for somewhere between a few and twenty minutes, but I can totally show up for people to pay me to be able to concentrate. 

Rough Ruff

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Well now, how’s about a bad day?

Last week’s MRI apparently was absent of any suggestion of problems. Dr S doesn’t want to do surgery for fear of making my pain worse. After delivering the news he thought I was looking at him like I hated him, but I was trying to wait until he left the room to cry my buckets of hysterical grief tears. I am terrified of surgery but I have faith in it, probably more than is due. 

He’s referred me back to the so far useless pain clinic for a spinal cord stimulator, which is an implant into my nerves either in my back or somewhere on the way to my foot to shock my nervous system when it tries to deliver pain signals. I described it as a pacemaker for nerves to my friend Horseradish Whisperer, but I just realised it’s a bark collar. This is the singular instance in which I want my independence to be muzzled. 

If I’m approved for this implant it better work. Except, I’m confused how it will work while the nerve blocks didn’t. These guinea pig treatment strategies are way past the borders of offensive. Medical communities truly don’t know much about the human body. 

Bring Your Own Hand Tool

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The MRI with contrast injected into my toe joint was today. I took an entire gram of Clonazepam, and found out trying to preempt anxiety inducing situations doesn’t work. I ended up with a mental status of “Hey man, everthins alright,” and a physical status of “EEEEEEEEE! TERROR! STOMACH TWIST UP NOW!!” It was completely bewildering. 

I cursed and giggled hysterically during the injection, and came close to crying hysterically after. The doctor said it was a very thin needle, but it felt like he used a screwdriver then set the mess on fire. Lying completely still with my hand tool foot in an immobiliser for the 30 minutes scan was…well I had to try very, very hard not to get hysterical. 

Coming down from it now, I realise the Clonazepam probably just delayed the inevitable. I guess that’s good, in that they got the scan. But now, on this beautiful day, I have this very strong urge to run down the street screaming. 

Another mid night nervous breakdown

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What even is life if one doesn’t have mobility, range of motion, or the energy to deal with the lack? 

I’m a hyper person. Not moving around gives me anxiety. Not being able to move around – let’s just say these days the anxiety cradles a nice bit of impotent rage. 

Somehow I’m supposed to [insert chronic pain/injury/illness cheerleader axiom]. I think those sayings come from people who

  1. Are not in chronic pain
  2. Have never had to deal with chronic pain
  3. Have forgotten what their chronic pain situation was like and now feel entitled to tell people how to live

or any other variety of reasons I don’t care about thinking of anymore. 

I’m tired. I want this to be over. I want to have a life again. I command thee to commence the patching up sequence, Universe. For an injury that was supposed to heal in six to eight weeks, forty weeks is way overdue. 

Practicing aloofness

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Despite my intentions to keep random people out of my medical business, my automatic response is to be nice and sociable. I can’t turn it off! I have to figure out how to be selective with it, or else I’m going to remain ashamed for not standing up for myself.

Today some lady asked me what “I did.” I said I tore some ligaments. She goes, “You have to be more careful!” in a laughing, jokey mom voice. I just smiled, right under my side eye. After I left and did fifteen minutes of angry crying, I came up with “I’ll take that into account next time I have a freak accident.” Can you feel the breeze from my eye roll? Sigh. But I guess because of her, I was able to be a little rude to the busybody librarian.

“Oh, you have your crutches again!”

Annoyed shrug.

“But you were doing so well!”

“Not particularly, actually,” I said in a Get Out of My Business voice, already three feet past and not looking at her.

“Oh.”

Ugh. I need to put up a banner in my bedroom that says, “It is not mean or selfish to have boundaries.” And maybe another that says “Not abiding passive aggression is okay. You’re still a nice person.” It’s hard being Super Empathetic.

Fear and Anxiety in the Hinterlands

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I wrote a long post and the WordPress app ate it. 

Fuck you, WordPress app. 

I’m really scared of and done with my health problems.  

[insert nervous breakdown]

My pain is at minimum on the scale of a bad headache. Currently, at two AM, it’s worse than a bad migraine. 

There’s no pain medication I can take regularly without crazy repercussions. Medical procedures give me bad anxiety and I have one in eight hours. 

Life is fucking unfair. 

Mostly ranting, and some lace

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Today I realised the value of going back on Ritalin. I haven’t been taking it because I didn’t see the point. I can’t work, and I live in a tiny town so options for befriending folks is low. However, I took one this afternoon and I feel closer to normal than I have in months. Obviously it can’t do anything for the pain and exhaustion, so my brain fog in that aspect is the same, but it’s nice to feel cheerful and somewhat calm again. I’ll stress that some more. My default is cheerful, and it is excellent to feel it again.

Unexpected necessary ranting: The town library is minimally ADA compliant, and attitudes about me elevating my foot vary from indifference to “Ugh, why?!” One of the librarians has cultivated a nicely sour attitude, as a swell icing on the crap cake. She probably thinks she’s being sympathetic or nice when she asks or comments on my injury, but no. She doesn’t talk to me about anything else, so she just sounds like a gossip spouting poorly veiled pity. Boy, that doesn’t sound cynical. Meh.

I’ve come across the “Pain changes you” axiom many times, and thought that I did change. I think it’s only happened for real in the last few weeks, mostly because it’s tough to reconcile my chronic warmth with being hard. I realised I was different the other day when some random woman in the street commented on my boot: “Boy that looks uncomfortable, all hot and sweaty! Ha Ha Ha!” and I felt ashamed and at mad myself for not responding in kind. “Yeah, thanks for reminding me,” or “Gee, you don’t say,” or even the slightly self-deprecating “Uh huh, aren’t you glad you don’t have to wear one?” I see those intrusive, supposed attempted small talk comments as a type of harassment, except cutting those people down will earn me a dirty look or an Angry Injured Person title, instead of possible physical violence. I refuse to feel sorry anymore for being sick and injured.

I refuse to feel sorry for being sick and injured!!

I found a different pattern for the team colours sock! I’m going to adapt the lace from TinCanKnit’s gothic lace cowl.

From the pattern page

I’ve gotten minorly obsessed with gothic lace in the last few days. I want to knit them all. They’re so pretty yet somehow kind of creepy, like if the Addams Family or the Munsters dressed in Sunday Best. That’s the best kind of creepy, though – when it draws me in and then I realise something is just off kilter. Now I need to go find a good horror movie on Netflix for tonight.