Tag: MS

I don’t know if it’s sad or if it’s an actual achievement today, but this is the longest I’ve gone posting consecutively. 23 days. And since January 1st, likely long before it as a matter of fact, I’ve found that I loathe my job.

It’s not that the job is a frustrating one, toxic, or any of the typical complaints heard from job environments. There is the occasional micromanaging, but it’s slow, and when the calls take ten to fifteen minutes between each, the hands get fidgety and I reach for pen and paper, paint and canvas, or clay and start creating something that wasn’t there before. It’s just simply not something wanted for long. I’m nearing my bachelor’s in a year, and want something that ties in with interests I hold dear and I truly enjoy writing here, and about everywhere.

But through readings, continued research, and a feeling that there’s more I can do than just talk about a personal observation, perspective, and the emotions that touch the sensitive spots in the mind and heart.

The plan still remains as I shared the other day (see Day 20). My focus will maintain on the goals, in all honesty I feel more and more that I have to. And here’s why.

I’ve neglected to share a prominent concern, though I think I’ve mentioned some concerns I shared about the MS, being positive for the JC virus, and the Ocrevus infusions that started late November 2023. What I may have not shared was prior to starting the Ocrevus, my cousin visited me in dream. The biggest reason I feel this to be important, is one, he passed away about five years ago, two when I was given the news he was sick, I knew he wasn’t going to make it.

Ever have those times where beyond doubt your heart and mind consecutively concur with the details, the information, and the reality of what’s to happen? It’s almost as if there’s a grabbing at a time tunnel that only the mind can pass through to see it and then it fades. This happened the day I was called with the information that my cousin was sick. It hit me like a train, and after hanging up I broke, and wept knowing, beyond a shadow of doubt, science or faith wouldn’t heed what was to come. He passed in April 2018.

He spoke to me a month before the Ocrevus with this one line: “We’ll see you soon.” But there was another voice sharing it, my brother, who had also passed from a brain aneurysm two years ago, they spoke in unison, my cousin smiled and I woke up. I kept it to myself for a day or two, rather shaken but tried not to let it bother me. My figuring was due to the concerns I had shared with my neurologist, fear of knowing I’m positive for JCV, and the small warning heard at the end of the Ocrevus commercials. It’s not a small one, mind you, it’s rather shocking; increased risk of cancers, including breast cancer, PML, and death.

I breathed in and took a risk, accepted the chances and thought, it’s either I have ten years left of typical living or take the chance and gain 41 years to live with my family. So I went through the two-step infusion for the first run and did it with slight apprehension but with a relief that I had made a decision. It went surprisingly well, a small infusion reaction typically seen with Tecfidera patients. It’s another MS medication and the flare up reds the body like a lobster with an agitating itch, but luckily the nurses resolved the small reaction. I exhaled and started painting, writing, and pushing myself into everyday, making sure that I tried to live my every hour with purpose.

Now MS comes with a myriad of symptoms, annoyingly so, making it hard to distinguish a headache from the myelin sheath around my spine being eaten away, nerve pain that screams through the legs, arms, back and anywhere else. The symptoms become easier to recognize but still nerve racking being in my 30s, with the exhaustion, confusion, and showing signs of memory issues, cognitive ability issues, and motor function issues, but I learned to deal. Sometimes I didn’t want to but I’m trying to stay strong.

Seven weeks from the second infusion and I’ve checked 5 boxes off for the signs of PML, shooting pains like steel rods suddenly appearing in my arms and throughout my body, memory issues where the space of a memory is gone, visual issues similar to seeing things like hallucinations, depression (still unsure), and an exhaustion that beats on the body but holds on to the sleep leaving me awake at 12:53 am or longer and waking at 5:00 am.

I want to call the doctor, but then again it’s MS, and I keep telling myself it was just a dream I had during a nervous time, that it’s in my head and it’s likely just the MS being difficult, and then there’s the fact, though I know I’m likely dreaming every night I sleep, I haven’t had such a vivid and daunting dream since, that I was able to remember upon waking.

That’s why the plan has been set, my hope is that my life will be long and rewarding, that I’ll get to see the grays on my son’s beard as he ages, that I’ll walk my baby girl down the aisle for whomever they love. And that I’ll be able to resurrect my marriage before I pass.

But I just don’t know, and to be frank, I’m fearful of what may happen, because the more symptoms that share similarities with the data of PML reports, bring worries of living either one more year, being in a vegetative state, or having the original set theory that I’ll live how I’ve lived for another 10 years before it gets too difficult and I’ll need a live-in aid.

So now you have it, and now maybe you see why I’ve been more than forthcoming about who I’ve become, how I observe the world and the joys and perspectives that are within. I will continue to write, paint and share what I have to share til there’s nothing left.

Note: I don’t have many to share this with, so yeah it’s raw and yeah I’m showing a fragility to me and what is happening but why not?

Goodnight and Good morning, good morning and goodnight.

Nosce Te Ipsum