Multiple Sclerosis Sucks but Good ARC Reviews Rock!
Medical Leave is not a vacation.
Hi all! Today’s Substack is a little shorter and more personal than past adventures. I’ve been recently put on medical leave due to my multiple sclerosis (MS) flaring up. Unfortunately part of my ‘rest and recovery’ regimen involves limiting screentime, so if you follow me on social media, you’ll notice I’m not quite as active. Yes, I feel like a naughty teenager. So I’ve given myself an hour to write today’s Substack (based on hand-written notes, no less!). Hold on tight!
But first, the good news!
My First Reviews
Brightening up my dark days, I got my first official review for THE END OF THE WORLD on Goodreads, and it’s a glowing five-star rating! The reviewer, known as @BlueSmokeFire on Twitter and Instagram, shared some wonderful thoughts (you can read the full review here). These are my favorite excerpts:
Additionally, an ARC reader reached out by email to express her enjoyment of my book. These words of encouragement mean the world to me, especially as a new author often doubting the worth of my work.
Now, back to darker days….DUN DUN DUN
What’s the Story?
In 2015, I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), a condition marked by periods of stability and flare-ups. Basically, my immune system gnaws away at the protective lining of my nerves, leading to all kinds of neurological issues. If you want to know more about MS, check out National MS Society’s What is MS? page.
Most of the time, my life proceeds normally. The medication I’ve been taking has been very effective in keeping my condition stable (a drug called Mavenclad). Looking at me, you wouldn’t know I have MS (I’m walking and talking!).
What does my ‘normal’ look like? I move about normally, but my feet and hands are always mild to moderately numb. On different parts of my body, I experience random prickles, numbness, and weird sensations (my personal favorite is the sensation of having water poured on a spot; I’m less fond of the one that feels like a very bad sunburn).
The last three weeks has seen an escalation of my normal issues. I get painful muscle spasms in my hands. I get occasional tremors in my hands and upper legs (you know those YouTube videos of Parkinson’s patients holding a glass of water and the water spills? Yeah, that’s me…). My chest and arms frequently feel like they’re on fire. My fatigue is off the charts. I have constant dizziness that is aggravated by things like looking at a screen, standing too long, or moving too fast.
Considering my day job is technical support and data analysis, and my evening job is marketing my book online, you can imagine how devastating this flareup is.
Recommended Treatment
Doctor’s Orders: reduce stressors, minimize screen time, and light exercise for 2-4 weeks. I’m taking a medication, Gabapentin, to reduce pain and other neurological symptoms, but this doesn’t slow down disease progression. For that, I undergo what they call a disease-modifying therapy (DMT).
My last DMT used a medication called Mavenclad, which has been very effective in the past. Because of my recent flare-up, however, my neurologist has scheduled me for an MRI and, if the MRI shows new lesions (scars left on my brain from the attacks on my nerves), I’ll likely need to undergo another course of Mavenclad or switch to a different DMT.
How Am I Feeling?
I’m struggling with the restrictions, to be honest. In the few minutes I’ve been typing this, I’m already starting to get ‘the spins’ and the skin on my arms and chest feels like it’s burning off. I’ve said to my co-workers (fellow nerds) that this is my worst-case scenario. I always imagined that disability would involve me lying in bed with a book or tablet. Instead, I find myself dusting off my treadmill and closing the lid of my laptop.
Buuuuut the good news is that my flareup will likely clear in a few weeks, as is the nature of the MS beast.
What Am I Doing With My Time Now?
Attending doctor appointments.
Getting plenty of rest.
Editing Book 2 using pen and paper, which seems to be easier on my condition.
Catching up on my paperback TBR (to-be-read) pile.
Singing and playing the piano, though my hands are a little clumsy.
Visiting friends and family in person.
Doing some offline Christmas shopping, though I’m mindful not to exert myself.
Good News About My Book Launch
It’s not! Fortunately, the pieces are already all in place! Book 1: THE END OF THE WORLD is still set to launch on February 5th. Pre-Orders are mostly available, but IngramSpark had issues pushing out my paperback, so it’s about 50/50 whether it’s available. The important thing, though, is that there will no delays in my launch! What’s affected is the amount of time I can spend working on marketing materials and doing online posting.
Book 2: SEPARATE WORLDS is now being manually edited from a print-out, so even that is not delayed. Yes, I’m getting hand cramps. I feel like I’m back in the 80s!
After seeing numerous neurologists, I was given the diagnosis of MULTIPLE SCLEROSIS. I was given medication, which helped, but my condition was rapidly deteriorating. Ultimately, I learned about the useful MS-4 protocol at vinehealthcentre. com. This treatment has helped greatly with reducing my symptoms, it was even more effective than the prescription drugs I was using. My tremors mysteriously disappeared after the first month of medication, and I was able to walk better. Within 4 months on this treatment most of my symptoms has vanished. The MS-4 protocol is a total game changer for me. I’m surprised more people with MS don’t know it. This MS-4 protocol is a breakthrough
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