It’s been a little over a year since I came out about my real life and wrote my article about how Chris Hardwick’s The Nerdist Way got me started down the right path to evil villain success, following that up through the winter and spring with a couple of assessments about the progress I was making. Over the summer I got scattered in the impending Xanga relaunch wind, but now it’s time to see where I’m at.
Last year around this time I had come through eight weeks of physical therapy for severe lower back pain and extensive nerve involvement affecting various functions and was starting to regularly visit a fitness center to build core strength. I started out on a NuStep barely pulling about ten minutes at work level 2 or 3. Seriously, that was all I could do, but after several years of severe illness and consequent weakness and immobility, that was actually pretty good. Over the winter and spring I managed to increase my workload and workout length and add a couple of machines, even through a lupus flare up. I did another eight weeks of physical therapy through the spring and added more workout machines, and then sixteen more weeks through end of summer and early fall where we were able to identify how I trigger waves of severe fibro lasting several days using certain machines, even at the lightest workloads and a handful of reps, so I was told NOT to use those machines (my muscle tone is quite excellent, thanks to the continual kinetic working out the fibromyalgia puts me through, so I’ve been commanded to stay focused on core strength, flexibility, and mobility). At present I am able to pull 20 minutes on a NuStep at workload 5 or 6 (depending on how I’m feeling) doing 20 more steps per minute than I could several months ago, and afterward tool around town running errands, carry in groceries, and then work on easy chores through the rest of my day. I never dreamed I’d be this capable again. I still have a time limit with the chronic fatigue before I hit my wall, so I’m still pretty limited to driving only as necessary. Once I hit my wall, my brain falls out and I make very poor decisions in traffic (any aspie and spoonie would know that driving in inclement weather or in the darkness decreases the time I have left till I splat all over that wall). On days I stay home I can easily brisk walk for about 30 minutes now, which is sweet since 4 years ago I was having to use a motor cart to get my shopping done because I could barely walk at all.
In the meantime, I’ve been perplexing several doctors with an all new thing going on, which I finally talked about at spaz: Agrajag. It’s still going on, very weird, but I’m hoping that the ‘numbness’ I feel nearly all over my body sometimes now (starts with my head) is just my nervous system going through a sort of shock from my pain level being so drastically lowered, because all anyone can agree on at present is dysesthesia, which I try not to think about as terrifying, given CNS lupus (but I have to keep in mind all the occipital, trigeminal, and cervical nerve damage I’ve been through, so this might actually be ‘normal’. I honestly haven’t known what normal feels like since I rolled the car when I was 19.) I still get pretty good pain levels that some people would probably think is a ten on the pain scale (the pain scale is objective and relative, this isn’t a contest!), but it’s so much nicer than my nervous system continuously screaming at me that I’m almost happy about it and don’t mind much. Still, it’s very ‘unnerving’.
The problem with this new sensation stuff is that I can trigger these numby sensations a little too easily by working out too much without enough rest in between. I hit a big wall this week, so I’ve got to back off again and let it all settle back down, because the last thing I want is an inflammation flare up in my brain (vasculitis caused by lupus flare, the brain is Nerve Central, as it were). I may be in the best health of my adult life now as a 30 year lupus survivor, but that doesn’t mean I can do whatever I please and get away with it, and I sure don’t want to find out the hard way! Now that I’m having more energy, it’s hard reigning myself in on days I feel more fantastic than usual.
So right now I’m staying focused on plenty of rest and water, good nutrition, yes I take vitamins and a magnesium supplement (no herbal supplements, I have allergic reactions to too many things, sorry), and staying busy with fun stuff so I won’t feel depressed with thinking about this weird numby stuff. There’s no reason right now to think this is a bad thing (it’s been going on for months with nothing getting worse), and I’m actually very thrilled I passed a treadmill stress test with flying colors earlier this month. Even the cardiologist couldn’t believe it given my age and medical history, so THANK YOU CHRIS HARDWICK.
In other assessment, my Lexx blogging has come to a standstill while I wait to see where the Xanga dust settles (as they call it) before I put more work into it, and my first book launch timetable has undergone a schedule revamp because the blogs are a mess, and with holidays coming and cold weather spiking a few problems for me, I’m just rolling with what comes. It’s helping a great deal that SnarkAlec Radio is keeping me on a schedule of sorts. I’m the kind of person who needs a schedule from an outside source to keep my own stuff on track better, helps me pace myself mentally and physically. It’s also helping a LOT to have twitter buddies so I don’t sink into an emotional lethargy being a hermit. If you’re struggling with disability and feeling a little lost, I really recommend getting a twitter account so you can feel like you’re part of the world in real time.
I still have really big plans. I’m contracted for two books to start with, have several more in the queue, have discussed a podcast idea with several people, and of course I still intend to build the largest Lexx film study on the internet. Takes time. As you can imagine I really don’t watch a lot of TV, but my fave shows right now are It’s Always Sunny in Philadelphia, Continuum, Once Upon a Time, Key and Peele, Strangest Weather On Earth, The Big Bang Theory, Tosh.0, and I’m waiting for the Doctor Who 50th Anniversary. Scott watches all the rest- The Walking Dead, Hell on Wheels, Revolution, Arrow, Grimm, Defiance, Marvel’s Agents of S.H.I.E.L.D., The Tomorrow People, Sleepy Hollow, and I’m sure I missed a couple. We both watch Person of Interest, Falling Skies, and Under The Dome. Scott’s shows are stacking up in the DVR because he works around the clock and watches only an hour of TV on weeknights most of the time. I’m sure we’ll catch up over the holidays, unless he gets lost in Legend of Zelda again. And through it all I’m still filling up my stack of spirals.
Oh yeah, one more assessment. I haven’t been able to read very well since 2004 when a virus first hit my brain and screwed up more nerve stuff with my eyes, but this month I flew through a novel in about 3 days flat for the first time in years without getting eye strain, and last night I drove home in the dark without getting nasty shooting pains through my eyes every time light hit them. I’ve noticed I’m more easily reading black and white on my monitor, too, so this is icing on my assessment cake. There was a time I thought I’d be going blind (not that uncommon with lupus) and even prayed to if only the pain would go away.
So in spite of how this all looks, I’m having a truly fabulous year, I’m enjoying so much more than I use to be able to, and I’m looking forward (pleasepleaseplease) to more improvement over the coming year. I think the key to it all is holistic health and psychoneuroimmunology, which I’ve been working real hard on. Years on pills never made me better, it only jacked me up enough to keep me working till I crashed completely. I think the question is How badly do I want to feel better? What am I willing to do to feel better? What kind of commitment am I willing to make? This year has been a real grind, 32 weeks of vigorous deep tissue therapy, getting my workouts in at the very least once a week but usually 3 times a week no matter how rough I feel or what the weather is like (I have to commute to a fitness center, I’m way out of town), keeping my shopping done so I’ll have good food to eat instead of junk, and definitely making myself do something nice or useful every single day for someone else. Feeling good about being here on this earth is crucial, and I have to work at it every day, it doesn’t come easily to me.
So where will I be this time next year? I’m *hoping* I’ve got the publishing ball rolling and my blogs all fixed by then. I have no idea if I’ll make any money, but who cares! Main thing is I’ll be splatting my brain all over you guys, a sport I truly love and get joy from. My long term goal is to make it to Ireland someday. Need the money and need the health. Working on it. 
I love this guy. 
And for the MerLexxians, thanx for stopping by! 
This continues at The Nerdist Wayfarer.
Arch Heretic 
I had no idea you were going through so much Janika; I’m sorry that you’ve been suffering but so glad to have connected with you!
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