#Spoiler alert: It didn't help and now I use a walker and can barely walk a block or take stairs without fall risk | Explore Tumblr Posts and Blogs

stonertransdad · 3 years

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Life Update since I hadn't been on here in forever

The pandemic was/is wild! Lockdowns started literally around the time we were going to the fertility specialist to get her pregnant. I lost my job to COVID in March shortly before we did the procedure, but we decided there's never really a good time to have a kid. Why not during a global pandemic when one of us in unemployed? (BTW, I don't recommend having a kid during a pandemic. Not being able to go to all of the appointments and having to sit in the parking lot was brutal.)

Let's talk about May friends...it was rough. (TW for mention of suicide btw. I'll post a gif where it's safe to start again if you wanna skip over it.)

So May 1st is the anniversary of my father's suicide. It had been 4 years. I found his body and since he wasn't married, I had to handle his affairs and arrange his funeral. May 1st, 2020 my wife and I had a Zoom game night with our friends and I got drunk because everyone was drinking (except my wife because she was pregnant). After our game night at like 2am, I had a psychotic break. I threatened to kill myself numerous times. My wife tried to talk me down, but eventually called the cops to take me. I thank her for that because looking back, that was the moment I knew something needed to change. I was convinced the cops were gonna kill me because I'm a trans dude in rural West Texas. I legit took the phone out of my wife's hand, hung up on 911, and yeeted her phone across the backyard and tried to hop the fence. Eventually the cops came and talked me down. They took me to the hospital an hour away in handcuffs (for their protection I did nothing wrong). They took me to the religious hospital that I was born in. So when they looked up my info by my name and date of birth from my driver's license (I only changed my middle name) literally all my paperwork and my bracelet had my deadname and wrong gender despite all of my legal stuff saying male with my new middle name. I mentioned it to them and they didn't care. They misgendered me the entire time I was there. I had hit my head hella hard on the bath tub when my wife was trying to snap me out of it, did the hospital even check me for concussion? Nope. I had punched so many things and my hand and wrist were swollen and discolored. Did they check out my hand and wrist? Nope. I was there for over 10 hours before I was able to convince them I was okay and that it was just the alcohol. Did I mention during that 10 hours I was literally out in the hall on a gurney with no mask and this was when COVID was running rampant in Texas (the first time)? I heard people die that night. I had nothing to distract me because they took away all of my personal items and clothes. My wife picked me up and we went home and I have been sober ever since. It's not the first psychotic break I've had with alcohol in my system. Alcohol just doesn't agree with me, but I'm finding new things to replace it with.

TW has been lifted...it's safe now.

A couple of weeks after that I began teletherapy because I had been on the same mood stabilizer and anti-depressant for almost a decade. The more I thought about it, the more it made sense that I felt like it hadn't been working for at least a year. This is a reminder to check in with your doctor if you feel like your meds aren't working. You may just need a different dose or a new med. There's no shame in that. I bounced around on various medications trying to find the right combo, some side effects scarier than others, but we got there. Before this, I had been diagnosed with ADHD, Major Depressive Disorder, Borderline Personality Disorder, and Generalized Anxiety Disorder. My therapist threw out my Borderline diagnosis and said it was CPTSD instead, which made sense.

Fast forward to December because my wife was pregnant, I was unemployed still, and we did absolutely fuck-all because the global panini was still raging.

Our son was born on December 3, 2020. He weighed 5lbs 9oz and scared the ever loving shit out of us. He wasn't breathing when he was born so they called NICU in ASAP. I'm freaking out because I can hear and see what's going on while my wife was asking if he was okay as they put her guts back in place to sew her up. 5 or so minutes pass and a nurse asks if I want her to take some pictures. I'm like is he okay, he still hasn't cried. She's like "oh yeah, he's chillin." This goon was being held by a nurse and was just looking around not crying or anything. Chillest baby ever (he still is btw). I held him next to my wife's head until it was time to go back to the room. Little dude did have to spend 4 nights in the NICU because he couldn't keep his sugars or temperature regulated, but he was healthy otherwise. He's now 4 months old and is starting to sit up on his own a little bit and he's OBSESSED with standing. He's still a little guy, but very healthy and growing like a weed. He saves my life daily.

So after being unemployed for over 9 months, I started a new job working in a call center. I absolutely hate talking on the phone. It gives me anxiety and throws me into panic attacks, but I had been putting out hundreds of job applications since I lost my last job and this was the first offer I got. I wasn't really in a position to turn it down since my unemployment had ran out 2 months prior. It was 2 months of training, then we'd be on our own. I got thru the training and thought I could handle it...until they started putting us on live calls with someone helping us if we got stuck. My mental health hit the lowest point it had in a few years and my wife was terrified she was going to lose me. She convinced me to quit on February 28th (not because I didn't want to, but because I'm a stubborn ass who felt guilty). My meds got tweaked a little bit more dosage wise during this mess.

Starting about mid-February, I was experiencing severe shakiness, tremors, and spasms. I've always been a shaky person and never really thought too much about it, but at some points I could barely feed myself, or get a drink, or hold my son. On March 7th, I tried to make an appointment with my doctor about the weird symptoms I was experiencing, but she was out of town and her next opening wasn't until the 31st. My body said that won't work and my wife rushed me to the ER on the 9th...I had begun having seizures that day. I had no previous history of seizures. Got to the ER and had a seizure literally as I was walking thru the door, so they rushed me straight back. They took some blood and that was literally it. No MRI. No CT. They pumped me full of Ativan and said it was just a panic attack and to go home and chill.

Spoiler Alert: It wasn't just anxiety. I was having 20+ seizures a day. On the 10th, my wife rushed me to a different hospital...the good hospital over an hour away. First we had to drop off our gremlin with my mom to make things a little easier. Yet again, I had a seizure as I walked in the door and was taken back immediately. I don't really remember much because they kept pumping me full of Ativan and morphine because I had been in excruciating pain from the number of seizures I'd had. I do remember them doing a CT pretty quickly after I got there. Then they weren't happy with the results of the CT, so they took me to get an MRI, which showed possible signs of Multiple Sclerosis (but I didn't find that out until AFTER the notes showed up in my patient portal after being home a few days, so I raised hell...more on that later.) They did a 24 hour EEG on me and it showed nothing abnormal. Also, EEG glue is a bitch on your hair and scalp. After looking at everything and given my previous mental health history, they diagnosed me with Psychogenic Non-Epileptic Seizures, or PNES. It is a subset of Functional Neurologic Disorder, or FND. I couldn't walk well anymore and had to use a walker when I was discharged. I was in the hospital for 3 days.

When I had my follow-up appointment on the 23rd, I asked why the possibility of MS was never mentioned to me since it was very clearly in the notes. The doctor didn't have an explanation. He called in a referral to neurology so I could get a 2nd MRI to confirm MS and marked it as high priority. He also didn't take my pain seriously. My pain levels had been at a 5 or higher every single minute since they took me off of the morphine in the hospital. He told me to keep taking prescription strength doses of ibuprofen and Tylenol, which I had been. I let him know I had been and it didn't even take the edge off the pain. He ignored me. Leading up to this appointment, I had also added urinary incontinence to my growing list of symptoms and was forced to wear diapers so I didn't have to do laundry all the time. The doctor also took me off my ADHD meds because they were lowering my seizure threshold. He also took me off of my sleeping meds and nightmare meds for the same reason I'm assuming.

I kept my appointment on the 31st with my primary doctor because she's been my doctor for 5 years now and I knew she'd take my pain seriously. She did. She immediately wrote me prescriptions for a muscle relaxer and Tylenol 4. She also told me that my referral had been rejected by neuro. She said my case wasn't a good one for what she called a "wallet biopsy" and the doctors in neurology could be real assholes. She immediately sent the referral to other locations to get an approval. I am still waiting on that despite it being marked as high priority. She wrote me a prescription for a wheelchair because we both agreed my wheelchair was not enough for particular days.

Yesterday my wheelchair was finally ready for pickup, so my wife drove me to go get it. I'm still unable to drive due to my seizures and my tremors and twitches as it's predominantly in my legs and arms. I am an ambulatory wheelchair user now. Some days I can go short distances without my walker, some days I can't go without my walker, some days I can't even get out of bed, and some days I will be using my wheelchair. Don't judge a book by its cover, not all disabilities are visible. I have managed to keep my daily seizure count down in single digits and have even had a few seizure free days. They are still incredibly taxing on my body. I feel like I can't ever replenish my spoons fast enough to keep up with anything in my life.

So all in all, life has been chaotic. We are moving from Texas to New Mexico in the next few weeks, which should be interesting considering I can't overdo it without throwing myself into seizures. We will be closer to my mother-in-law so she can help us with our son and I can start resting a bit more on the more difficult days. Being a stay-at-home dad with an invisible illness has been one of the most challenging things I've done in my life, but I wouldn't change it for the world.

Sorry this is so long. I just wanted to update my followers since it's been over a year since I posted before a few days ago.

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