Being disabled: the coronavirus edition!

CW: medical things, disability things, discrimination things

 

So my doctor disappeared, and then, after referring me to a pain specialist who decided to lecture me about hypnosis, the replacement doctor disappeared! Woe! Drama!

And then we got told we had coronavirus and not to go out unless we had to. “Have to” being rather loose, but still.

Suddenly the specialist is just handing me a script and his mobile number and saying he’ll handle everything and I can find a new GP later.

Suddenly the replacement GP is requesting my file and telling me I can see him so long as I drive 15 mins down the road to his other practice.

Suddenly everyone believes me. Because, you know, it’s easier than dealing with me while there’s a pandemic and they need the resources elsewhere.

(Except the Wednesday pharmacist, who’s a concern troll and thinks my medication is too strong and I have to Be Careful. Who wants to tell him that the problem is that I’m burning through the meds faster than 80% of everyone else? Not me.)

And then? I get my March cold in April, and the flu meds I normally take aren’t working. The hot flashes that had mostly gone away? Are back, and they aren’t flashes as much as chills, but I don’t have a temperature. I have the band pain, even though I managed to finally get food and haven’t had to do much.

And then? Everyone who’s sick gets permission to go get tested. Everyone in the whole state? And I was going to! But then I had a no-walking day, and a sleep-all-day day, and then I spent three hours going around all the official websites trying to find out whether the dedicated clinics can handle people with disability and what information I need to take. They don’t say.

So I decided to write out everything I could think of that they could possibly need, and went. Continue reading Being disabled: the coronavirus edition!

Spork me, spork me

CN: medical issues, again

 

So I had been wondering what to do with this space. After my first few posts, it seemed like there was no community here, the occasional like and sporadic spam comment aside, and re-experiencing all this just to write it out and put it online seemed pointless when mine wasn’t the only story and other people were louder, more heard, more supported.

Then I thought I had finally reached a plateau where things were good. I got my surgery, even though the hospital complaints department were useless and thought that they could fix my complaint by having the anaesthetist offer me hypnosis and never actually responded to me themselves. I had a doctor who gave me pain meds and I was functioning enough to get through and take care of my dad and handle family drama without cracking too much. Sure, I still couldn’t sit for long periods, still could only eat a cup or so of soft food a day, but I wasn’t in as much pain.

 

And then I went to the doctors last week for a refill, only to be told that my doctor wasn’t there any more. Continue reading Spork me, spork me

So that happened.

CW: medical/trans drama

Today I went for another surgical follow-up, because the last one went so well.

These things happened:

  • I got my statutory declaration saying I have had gender reassignment surgery. This means I can change my gender on my birth certificate without having to go through counselling again.
  • The doctor apologised for the trauma and that it happened and he was part of it.
  • The doctor thanked me for being a trailblazer and told me that they’re working to do better for other people.
  • The doctor thanked me for writing in to complain. I know! I am not making this up!
  • I don’t have to do HRT because I’m informed enough to make my own choices thank you, also, stroke risk. “But that’s for contraceptives, not the gentler ones for menopause…” *glare* … “We can manage osteoporosis risk in other ways.”

I had cake for tea.

make. it. stop.

CW: medical/trans drama, suicidal ideation, dysphoria, panic attacks

 

Thank you for your nudges, likes and messages since my last update.

 

I had hoped to come back with great news but alas, I cannot.

 

The Zoladex, after ramping to a critical mass of hormones, ended up working. The migraines faded, as did the pain, and the gynaecologist admitted to having delayed my hysterectomy and I was given a date. This came with a warning -that on the day I would have to fight for it. Instead, I needed to fight -not- to have it, and I failed dramatically. And, now, kinda dying? Maybe.

Continue reading make. it. stop.

A New Low…

CN: “helpful” people, discrimination…

 

So if I had known that I would be going for over a week with no rest days and spiking pain and other, yucky, icky, blerky issues, I may not have decided now was a great time to be trying concerts again. But, I went without food for a week or so back in August and bought a ticket to see Skillet. Because, you know, Skillet, right?

 

Come today and I was regretting this immensely when I got stabby spiky pain about five minutes before I had to leave. I had prepared everything though; I had instant ice packs, my medication in the box with the prescription label on it so nobody (SECURITY) could say it was illegal and take it away. I had money for a tshirt and drinks. I had my knitting. I was good to do this with the least pain possible, and it was going to be a treat, and I could just, like, maybe actually sleep after (ha).

Continue reading A New Low…

Broken Down…

CN: disability as inspiration, car drama

 

I have been babying my car for a while now – no extra trips, no long trips, no diversions, no resting on the side of the road until the pain subsides. The reason? It hasn’t been serviced in a while. It’s, technically, not even my car, and technically, my parents are responsible for upkeep and servicing, and this is part of our complex deal where I get to live in a house and not the street and in exchange have to do random things like let them know where I am at all times, half their shopping, and filter media. I am not, technically, homeless, so I don’t do anything to upset this.

So when I went to my mum and said ‘the car needs servicing’ and I had to wait until there was money, and wait until they came up so the (male) mechanics could talk to my (male) dad instead of me, with a side of “but you can’t talk how could you do it yourself anyway”, I waited.

 

Until today, when I was on my way home from a blood test, feeling very wrong (and the way I was treated there could be a post of its own…), I went over roadworks (I had forgotten to avoid them), and the car started making a sound that wasn’t normal, even for this car, because that conversation was two years ago.

Continue reading Broken Down…

Escalations and Revelations

CN: gender-related medical stuffs, codeine drama, pain, discrimination, medical ick, brief mention of suicidal ideation

 

Did you know it’s possible to be in so much pain that you forget to take pain meds? To forget they even exist, that there’s a way to make it not all-consumingly awful?

 

I didn’t. Now, this is me, we’re talking about. I refused anaesthesia for my last surgical procedure, twice, and the thought of taking it was highly amusing. The one before, I insisted on only using a local, and that for reasons of muscle relaxing only and, because I wasn’t allowed to type in the OR, and they didn’t ask the right question, I went through that without the local actually having an effect. (Try saying ‘it’s not a sharp pain, it’s an I-can-feel-the-needle-on-my-bone-and-that’s-not-normal-pain in sign with your bad arm being held, dislocated, above your head and the other arm covered by a blanket and held down and stroked for “comfort because you’re so brave, don’t you like being touched?”. Yeah. That’s about right.) This pain was no greater than my normal pain. After my appendectomy I was able to drive and function within three days, and the nurses controlled my pain meds because I was just like ‘but it doesn’t hurt more’. I can’t tell you what my “worst” piercing was because they don’t bother me. If I am complaining about pain it is black-out-in-the-toilet-after-throwing-up pain. The stuff I used to be able to get up to is more extreme than any of the fics I’ve written, and I used to be unmatchable because nobody else read ‘dark’ as anything other than ‘mild angst’.

 

So this morning, I was knitting and watching TV, and I looked at the clock and was like it has been three hours I can’t take my meds yet. Continue reading Escalations and Revelations