#on monday i had three failed lumbar punctures

[listen-to-the-inner-walrus]

so the other day, i had to deal with transphobia at a hospital i was at and tbh it didnt really bother me that much apart from the way i had to react to it. and i cant stop thinking about that.

for context, i dont pass. im a trans dude, but i dont look like a dude so im used to being misgendered and i dont normally correct people.

so when the receptionist was confused, it was like routine bullshit. i was happy to deal with it, but my mom ended up having to because if i had stood up for much longer, id have collapsed because I'm ✨disabled✨.

and while my mom was trying to calmly explain it, the receptionist very loudly outed me to the entire waiting room. which you know, not fun. she was also not subtle about her finding me weird and a freak which you know, not fun.

but then she made the active choice to fuck up my name in the system. she could have just deadnamed me, but instead she decided to put my dead middle name (which is a feminine name) into my current name instead.

so thanks to that, i was then misgendered the whole time and deadnamed and it confused literally every member of staff. pretty sure it also confused the system which led to me having to wait longer which you know, not fun.

that wouldnt have bothered me if i hadnt been sent to the hospital as emergency because i have a condition that can lead to total vision loss, and also can be caused by or lead to a stroke. like death was on the table.

and then after that fiasco, my mom headed to the car to get a drink as we (me and my brother) waited to be called. and when we were, i got to interact with another transphobic receptionist which you know, not fun.

she called my name and when i went up, she made it very clear that she did not believe me that my name was kai. she was condescending to me and was clearly trying to catch me in a lie . it was incredibly uncomfortable and honestly it was scary.

and what i hate the most about it is that i couldnt react.

the minute i react negatively, im suddenly the crazed trans person who will call the police on you if you use the wrong pronouns.

i cant get angry; i cant firmly correct them; i cant show any excessive emotion. i had to stand there and calmly react to their microaggressions.

my mom and brother got angry on my behalf. they corrected people, they complained, they made it clear that they were not going to tolerate transphobia aimed toward me. and i love them for doing that for me, but i hate the fact that i cant do it.

they can be angry about it because theyre cis.

no one is going to look at them and say oh see all cis people are crazed and unstable.

but me? if I react negatively, i risk making the situation worse and confirming their bias and hence causing problems for other trans folks.

im the one being hate crimed, im the one being discriminated against, and im the one who has to be calm and diplomatic about it.

its such an insidious form of transphobia. i felt so powerless, it was terrifying. and i felt like my only choice was diplomacy because at the end of the day, im at a hospital for something that can kill me. i cant risk being kicked out or accused of faking it or anything like that. i was fucking trapped.

and i just cant stop thinking about it now.

[justinsdaysinthedark]

Post #2 - Thank You

What an overwhelming 36 hours it's been. An endless amount of phone calls & messages of support got me through what was an agonising day of waiting yesterday. This blog was started to keep my family and close friends informed about my journey but it's grown into so much more.

From the bottom of my heart, thank you to each and every single one of you that took the time to reach out and wish me the best of luck. A simple message of support may not seem like much to you, but when you're in a situation like mine it means so much. Thank you.

Monday night provided the worst sleep I've had in weeks. Keep in mind, i've had some terrible sleeps in that time! Why? It was nerves. Simple as that. I was nervous for the gastroscopy and biopsy. It wasn't the procedure itself but the anaesthetic side to the operation. I haven't been under since I was five and the unknown had my measure. What if they didn't put me under fully? What if I could feel the procedure? What if I woke up early? What if I didn't wake up at all?

In retrospect, I lost sleep over nothing.

With the little sleep I did have, I woke up Tuesday morning earlier than normal. I was expecting the gastroscopy between 8:30am - 11:30am and knew I was booked in for a Radionuclide Ventriculography (RVG) scan of my heart later that afternoon.

Since being in hospital, 9am has been my regular time to get up, shower, brush the chompers - y'know, get ready for the day of sitting in my little 3x3 room and watching the world go past. Tuesday however, I was up and about at 7:30 - showered and ready. I hate feeling dirty, so if my procedure was at 8:30, I'd be ready to go.

Breakfast rolled around at 8:00 and I had to politely decline it as I was required to fast from 12am for the procedure.

This is about the time when my previous blog post took off and messages started coming in for the remainder of the morning. Before I knew it, it was 11am and nobody had been to get me for my procedure yet. I called the nurse and enquired to which I was told to hand tight, it shouldn't be much longer. Whilst she was around, she did my daily observations and it was no surprise to see my heart rate up to 100+BPM (regularly around 65BPM resting) and a slightly higher blood pressure. I guarantee this was due to the nerves.

Lunch comes around at 12:30 and once again had to politely decline. 12 hours fasting thus far - lucky I don't have an appetite still and honestly didn't care! It was around this time the doctor comes around with the results of my Lumbar Puncture. This fortunately came back negative as there was no major changes to the one I had three weeks ago. White blood cells still present with a marginally higher protein count than normal. I once again mentioned about my gastroscopy or there lack of and the doctor assumed I'd already had it. He said he'd follow it up and get back to me.

Mentally, I'm okay. Still incredibly nervous and a little frustrated I prepared myself for a procedure between 8:30 - 11:30 and still nothing. Your messages of support continue to light up my phone, which certainly kept me pre-occupied and made the time fly by.

Finally! 2:43pm and somebody comes to my bed to pick me up. "Justin Smith for a procedure? Let's go." I mentally build myself up as they take me. With my heart beating the quickest it had all day, we get going. Minutes later, we get into quite a dark room with a single scanner to my left and a glass wall. The radiographer, Liv meets me and goes through the basic questions. Name? Date of birth? Address? What are you here for? "A gastroscopy and biopsy" I reply. A few seconds of awkward silence follows so I split it with an "I think..." hoping to relieve the slight tension.

Liv replies with "not quite. We're here to do your Radionuclide Ventriculography scan of your heart."

My heart dropped. I spent the past fifteen minutes mentally preparing to go under and it's not even for the right procedure; I almost feel robbed!

To give you a brief understanding, the RVG scan involves injecting a small amount of radioactive material into your blood stream where they then track it until it passes through the heart, ensuring the heart is healthy and working as it should to a level that it should. Why am I having this scan? Good question. The doctors wanted to get ahead of the game essentially. Providing the biopsy comes back positive for lymphoma, I will need chemotherapy. The level of that chemo will depend, however if I do happen to require a strong dose, it can have negative effects to the heart. This scan is to ensure they have a baseline reading of my heart and ensure it will be able to handle a high dose of chemo.

This scan took 40 minutes from start to finish and before I knew it, I was up in my ward again. By this time, dad had arrived so at least I had somebody to talk to and reassure me when the time comes to get my gastroscopy.

4:00pm and the time finally came. 16 hours of fasting, I was slightly hungry but by this stage, I just wanted to get the procedure over and done with. I was still nervous, but more relieved the time had come. Having dad there for the hour or so beforehand made me feel a lot better about the whole thing.

The operation itself involved a gastroscopy (camera down my throat into my stomach) and if they could see lymphnodes, get a biopsy to test.

Cutting to the chase, was it worth worrying for 16+ hours? Not at all. All I remember is them checking my blood pressure, putting something in my cannula and asking me to count to 10. I got to 12 and next thing I know, I woke up coughing my lungs up in recovery with a nurse next to me. Luckily, the coughing only lasted for about fifteen minutes and that was just a result of irritating my throat.

Apparently, the gastroscopy went well and they were able to get a couple of good tissues from the lymphnodes to biopsy. Additionally, they also took the following photos whilst they were inside - I have no idea what they're of or even if anything is okay, but I thought they were cool!

For the first 45 minutes after the procedure, I felt fine. I was great! I felt incredibly thirsty and hungry but I assume that was simply due to the fact I hadn't eaten. Things from here turned pretty quickly once I had some dinner and a glass of water. I started to go downhill pretty quickly - feeling incredibly fatigued and tired....essentially dopey. It was from here I knew I just needed to have some rest and I'd wake up better in the morning. Needless to say, I was asleep by 9pm and basically slept through the night...except for when the nurses woke me up at 11pm, 12pm. 3am and 5am.

Waking up this morning (Wednesday July 17th), I instantly felt a lot better than I had last night. Admittedly, I had a bit more of a sleep in than I generally would've - it was great. I use the term 'sleep in' lightly though - it's nothing like a sleep in at home! What was the plan of attack for today? Well to be honest I wasn't too sure. A doctor yesterday mentioned briefly about a bone marrow test however the nurses and doctors on had no idea about one and couldn't see one booked in. I hadn't eaten since the night prior however the nurses got me to fast once again whilst they investigated. As a result, breakfast was staring me right in the face and I couldn't even touch my beloved weetbix, milk and sugar!

The clock ticks over to 10:37 and a Young, lanky doctor comes by. "Hi Justin, I'm Alex and I'll be doing your bone marrow procedure today..." Alex went on to explain the procedure, risks and what to expect. As he finished and started to walk away I had one last burning question. "When are we doing it? Later this afternoon?" "Now" Alex replied.

Woah. Wait. What? Hang on two seconds. I'm not prepared for this. You mean now...as in like, once Alex had finished preparing? You betcha....

Now I was under the assumption I'd be getting knocked out as I had done the night before however Alex proceeded to explain they'll put some medication in my cannula that "makes you feel like you've had four or five beers" as well as some local anaesthetic. No point being worried or scared about it - if it's getting done bedside, it couldn't be near as bad as the lumbar puncture, right? Once again, like I have been for the past few weeks I was completely and utterly wrong.

First though, what's this procedure involve? Basically, blood, white blood cells and platelets are produced in your bone marrow. This can be accessed via key areas of your body depending on your age...for me it was my hipbone - left side to be exact. The aim of the procedure is to get these fresh samples of blood, white blood cells and platelets as well as get a sample of my bone marrow - generally one small sample of the bone.

Alex got me curled up in the fetal position, lying on my right and basically began straight away. A few local anaesthetic needles numbed the surface before he inserted a needle in to collect the blood samples. This part was similar to a lumbar puncture, but I couldn't feel as much internally.

Alex then stated he was starting the bone marrow collection, which was without fail the worst part of this whole experience so far. He used the large needle with a blue handle, which can be seen below.

Alex hit the bone and advised me the next part was only going to tickle a little bit. What's he do? He starts to screw into my bone. Whilst I couldn't see, it felt very similar to uncorking a bottle of wine. Whilst he went in no deeper than 1mm, christ it hurt. The worst part was yet to come. Much like the pressure behind uncorking a bottle of wine, this happened too. Alex yanked the sample out and the pressure and pain was immense! Done. It's all done. Thank goodness. Then Alex said the words I didn't want to hear next. "Y'know what Justin? We want to make sure we only have to do this once, so let's get another sample, eh?"

Oh my lord. Are you kidding me? Whatever. Lets do it. I want to get it over and done with. I don't even think I replied, just mumbled something along the lines of whatever. And thus, the process happens again. I've attached photos of the two samples below, which I thought were pretty cool!

I must admit, Alex was incredible during the procedure. I asked at the start to keep me informed throughout the whole process. I'm quite an inquisitive character when things are happening that I don't know what the process is and this was no different. Alex not only kept me informed, he did as much as he could to keep me as comfortable as I could be during such a procedure. One thing I was incredibly surprised at was how much blood was on his hands!

Not much happened throughout the rest of today to be honest. Courtney, dad and mum came to visit but that was it. The doctors advised they are expecting the result of the biopsy tomorrow afternoon (hopefully) however they said it could take anywhere up to 72 hours from the procedure - which puts it at Friday night or Monday. Where does that put me? Same boat as I have been throughout this entire process - just waiting for answers.

I was advised that the results could come back either negative or inconclusive. Whilst this wouldn't be ideal, it's unfortunately just going to be another roadblock in this venture. In preparation the results don't come back the way we probably expect the, too, I'm booked in for an ultrasound of my gall bladder tomorrow. That will be their next avenue to answers. I suspect this is because my PET scan showed up significant areas in my gall bladder and I suppose that's not exactly a vital cog of the human body...so I suspect they'll just remove it, cut it open and see what's inside. But that's nowhere near a medical analysis of what's going to happen.

Before I finish for tonight, I'll leave you with how I am mentally. How am I going despite all this? Y'know what? I'm actually the opposite to what you probably think I am. I'm in the best mental state I have been over the past six weeks. Why? I think it's because we're close to (hopefully) getting an answer or at least following a more solid path to answers.

I end tonight with a final thank you. Thank you for all the messages and endless love. It's helping - trust me, it is.

Juzz xx

[relientkitten-blog]

2017.02.03

I failed at updates the last few days due to stress (not medical-related, interestingly enough!) So here’s what you’ve missed.

I was scheduled for my lumbar puncture on Wednesday, February 1st with an arrival time at the hospital of 11a and a table time of 1p. We planned to leave the house at about 10:25a to have time to park and navigate the hospital and find the proper registration (they have three, which I think is weird as fuck but maybe that’s normal?)

I received a call at 10:13a from my neurology team. The MRI and MRA both came back completely clean and they were suggesting cancelling the lumbar puncture since all diagnostics up to this point had been clean and they didn’t feel it was worth putting me through all of the rigamarole just to see if the o-bands are still present (which is the only thing that is really expected, if that.) They didn’t realize that we were supposed to be leaving for the LP in 10 minutes, lol. But we agreed that cancelling is probably the better idea right now. There may be plenty of future opportunities for spinal taps.

The good news is that a significant portion of the funk I’d been in the days prior lifted--apparently I’d been stressing about the LP and the MRI/MRA results pretty badly. Plus, clean MRI/MRA means !MS and !vasculitis.

The bad news is that we still don’t know what’s going on. And we’re back to “wait and see.”

I can’t complain, I guess. I mean, my sleep has been abysmal the past three nights (though I’m blaming the non-medical stress for most of that, plus possibly some hypo-mania) and I’ve had some touch-pain and electrical pain in my body. But for the most part, I’ve been doing pretty well. Well, today I can’t type for shit, but I think that may be more due to the lack of sleep. It’s hard to gauge where my systems are when my systems are not getting proper maintenance.

I do have a sleep study scheduled for the 13th so we’ll see if that provides any insight.

Bowel movements have been... interesting... lately. I’ve been reasonably regular--once a day!--and stool has been soft-ish, but I did have some abdominal pain paired with a bout of fecal incontinence via diarrhea the night before last as I was trying to fall asleep, which is always embarrassing. I’m blessed that my spouse is extremely laid-back and genuinely understanding. And of course today I feel like my stool is hard and impacted again. Sigh. Next week will be interesting because I’m having my wisdom teeth out--it’s basically the last straw I can grasp as far as this damned headache--so I’ll be on narcotics and I know those cause constipation. Good shit. (I made a funny. Hahahahaha! (If you grok that reference, we can be friends.))

Oh yeah, still having urinary bullshit on top of everything. Fever hasn’t cropped up in the last few days but the chills are back. I should probably message my PA but I don’t really feel like going in just to pee in a cup. If it’s still a thing on Monday I’ll go in I guess. They never cultured an infection the four pulls they did last time so I feel like it’s kind of pointless this time, too.

Spoons today are going to be spent on housecleaning. My first D&D game in forever is going to be on Sunday and I need the place to at least be slightly presentable for company. It doesn’t have to be spotless, but it at least needs to be halfway decent. Except the bathroom. That needs to be scrubbed.