Category Archives: Personal

Obituary Link

I’m posting this here because I finally have the strength to do so. Click here to visit our son’s obituary.

Hail and Farewell

I’ve been playing Pokemon Go for roughly 6 months now and I think this may be the first time I’ve acknowledged this (here) publicly which is more than just slightly amusing considering my username for the game is “jewleedotcom.”

Yes, you have reached the gal who diligently grinds at the Capitol several nights a week, walking “Jimmy’s loop” typically until the sun comes up (or at least into the wee hours of the morning!) in what seems an almost impossible feat to actually be the first female in the United States to reach Level 40. As far as I know, I’m still on track with this goal, although I’ll be the first to admit that life can unexpectedly throw curveballs (with ZERO bonuses for nice, good, or even excellent throws because life is a straight up ASSHOLE sometimes). Of course, these curveballs inevitably lead to the inability to accomplish much more than getting out of bed on some days (and some days it’s not even guaranteed that I’ve the ability to do even that), much less try and attempt to stick to any type of formal playing schedule because OBVIOUSLY.

At any rate, for those of you curious, I don’t plan to post here much more going forward (not that I’ve been posting much of anything here publicly anyway) because I’m in the process of setting up a new domain, in light of all of the devastating changes my family and I have experienced over the past few weeks (and will certainly continue to experience for the foreseeable future). That said, I have no intention of changing my in-game username, if only because that’s how so many of y’all have gotten to know me (or know of me). Once the new domain has been purchased and a content management system has been installed to facilitate publicly writing, I’ll post it here for a few weeks before likely setting it up so that this domain you’re visiting right now simply forwards to the new site. Regardless of how I ultimately usher people away from here and guide you instead towards my new place not here, feel free to leave a comment introducing yourself (and/or please feel free to share your own website/blog link!). I’ve met so many wonderfully supportive, incredibly kind, and genuinely loving members of the local Pokemon Go community and I’d love to be able to keep up with you all, much in the same way so many of you have been able to keep up with me. Besides, it seems a little one-sided for you to be able to stalk me online if you aren’t willing to afford me the same opportunity, amirite? [;

OK folks, that’s all for now. I’ll post the new link as soon as I’m able. Until we meet again…whether it’s here or at the Capitol…

(And if you’ve somehow landed here on my little island in the sea of internoodles and have NO idea what I’m talking about, just ignore the above as it likely makes no sense to anyone who doesn’t play PoGo. Either way, you can follow me along to my new domain (the link will be provided soon) or sift through the handful of posts here that are still publicly available.)

Getting it out of the way…

I’d like to emphatically state a few things for the record:

1. Even though I’ve never thought of myself as disabled, it’s impossible to deny the fact that I do have a physical disability.

It’s hard to believe that it’s been almost 3 years since my last (public) post here. Much has changed and a LOT has happened during my time away and eventually I plan on (publicly) writing about the important bits in detail. However, I’m here tonight to write about something that’s been weighing on my heart for the last couple of days.

For many of you out there (especially if you’re someone I know IRL), it’s old news that I suffer from chronic pain. It’s an issue that I’ve had to deal with since my early teens but only got to the point where it was disabling during my last pregnancy (i.e., my pregnancy with my son, Halsey, who is now four-and-a-half years old).

It began at around 18-19 weeks into this pregnancy, when I was once again forced to begin seeing a pain management doctor due to needing narcotic pain medication in order to treat the symptoms of a condition called pubic symphysis diastasis.

[I just found that if you search Google for this term, the first result is actually a resource page I wrote about this condition a few years ago when I was still a “Brain Behind the Band” and is archived by the Wayback Machine here). Ed.]

As if that wasn’t bad enough, the narcotics I was taking made me gain well over 100 pounds, mainly from fluid retention, because my liver hadn’t properly recovered from taking narcotics for approximately 20ish weeks or so with my pregnancy that had only ended a few weeks before my last pregnancy began.

Confused? Here’s a short math lesson regarding my back-to-back pregnancies:
* I got pregnant with my daughter, Coraline, in late August/early September of 2010.
* I delivered Coraline in late May of 2011.
* I learned I was pregnant again in July of 2011 (with twins no less!).
* I delivered Halsey in mid-April of 2012 (we learned at around 13 weeks that one twin had simply failed to develop).
* Hooray for having Irish twins who are only 10.5 months apart!

With a condition that made it feel like I had an ax permanently wedged into my pubic region, coupled with a massive amount of weight gained in a relatively short amount of time, plus a traumatic labour and delivery experience, and a sprinkle of postpartum depression and psychosis, I’m surprised that the only lasting effect was this TERRIBLE pain on the right side of my lower back, near my sacroiliac (SI) joint.

For this, I endured more than a handful of steroid injections into my lumbar and sacral vertebrae and quite a few “radiofrequencies” (a gentle term for what amounts to my doctor literally burning off the nerve endings in various dermatomes in order to eliminate the daily pain I suffered from). And when that stopped working, they decided that back surgery to implant a neurostimulator would be worth a shot, to see if that might finally get rid of the pain (and be the end of me having to take highly controlled, Schedule I narcotics on the daily).

It hadn’t occurred to me until now, but in just a couple of days (October 22) it’ll be two years since having that surgical procedure – the neurostimulator surgery that (only marginally) fixed the original pain issue (coming from the right side of my lower back near my SI joint).

Which brings me to the next point I’d like to make:

2. Having that surgery was one of the worst decisions I’ve ever made.

Having a neurostimulator implanted generally requires an overnight hospital stay. My hospital stay was damn near a week. For the first two days post-op, I was on morphine injections every 4 hours on. the. dot. and even then I spent the first 36 hours in so much pain that all I could do was curl up as best I could and just weep. “Two minor incisions” really turned out to be two four-inch-long gashes that required a combined total of approximately 60 metal staples – half in my mid-back (where the wired electrodes were implanted into my spinal column) and the remainder in my left hip (where the wireless battery that powers said electrodes calls home). And even though I was finally discharged after 6 nights in the hospital doesn’t mean I magically felt better. I was just tired of being away from my babies and was hell-bent on being home in time to enjoy Halloween (my favourite holiday of the year).

But that wasn’t the worst of it. Not even close. You see, in order to thread the electrodes into my spinal column, the surgeon has to do a procedure called a laminectomy, which essentially means that each side of one vertebra is removed (in order to make room to insert the wires). That’s generally all fine and good except the vertebra that the laminectomy was performed on is immediately underneath two vertebrae that are already fused together. (Remember the part where I talked about having had back pain since my teenage years? Well, it stems from this fusion a.) being located in an area of my thoracic spine which already doesn’t get much movement and therefore results in the thick muscles that support my spine constantly being in a cramped/tightened state, and b.) being congenital and not from a prior back surgery. Regardless, the end result is the same: the congenital vertebrae fusion and laminectomy essentially located in the same area means that all of the muscles that support that area constantly hurt. Muscle relaxers? I’ve tried every. single. one. my insurance will cover (which is 6 or 7) and they didn’t help in the slightest. Chiropractic care? I’ve tried it numerous times (with numerous providers) without benefit. TENS therapy? ZERO help. Ice packs and heating pads? Nope and nope. Literally, the only treatment that made my life worth continuing was continuing to take narcotic painkillers. Or lying down on a surface hard enough (i.e., not a bed) that it allows me to completely straighten my spine enough for the electrical impulses of my neurostimulator to hit the areas that hurt so that the electrical impulses mask the sensation of pain. Fun times, right?

Except, not really. Because apparently all some people see is me literally “lying down on the job” (i.e., lying on the dirty ass ground) when everyone else is “busting their ass.” And if that’s not what people notice, all they think is how unfair it is that they have to work a full shift (e.g., four straight hours) when I only work two or three straight hours. Because apparently all some people see is me sitting on the sidelines for 20-30 minutes and somehow think that I don’t make up that time by coming in to work for literally 20-30 minutes the next day (even if it takes me 2-3 times that length of time just to commute to work). Because apparently all some people see is me, perfectly able-bodied and just half-assing it in order to get something that they deserve and I don’t because THEY ARE working REALLY HARD and I’m just…not? Which brings me to the last point I’d like to make before I wrap this up for tonight.

3. Not all disabilities are visible. Remember that the next time you perceive certain behaviours as “lowering morale” because someone’s actions may be different than your own.

[I seriously doubt that those who need to read this will ever see it but on the off chance that they do, I’d like to say that nothing I’ve shared here is a secret and I’m more than happy to talk about any and all of this face-to-face. And I don’t mean that in a defensive or confrontational way. Seriously, just talk to me about it. Ask me about it. But whatever you do, PLEASE don’t make blind assumptions about it or about me. I’m about 99.4% as capable as you are doing any physical activity that you do – it may just take me longer or require that I make some modifications/accommodations in order to get it done. But it doesn’t mean that I won’t get it done because I will, even if that means I overdo it (which is often the case). One of my biggest fears is being thought of as weak and I will physically damage myself trying to prove that I’m not. Because I’m not. I look forward to each resale event because I genuinely love everyone else I’ve met who also takes part in them. Being pulled aside and talked to because one or more people seem to think that I’m not pulling my weight was heartbreaking to hear because of how much work I do. Yes, I’m a 20-hour volunteer and every. single. event. I’ve taken part in has seen me work more than 20 hours. And I’m not even going to mention anything about how every. single. event. has also meant my youngest son is hospitalized due to having another seizure. It’s pretty much the unfunniest running joke possible at this point. The good news? He had his seizure two days prior to this event’s set up. Hopefully we’ll make it through this one without another. (Fingers crossed.) Ed.]

Also (and completely unrelated), I’m back bebes! Just be patient and give me some time and I’ll have this place feeling like home again in no time. <3

Living Juicy (or Juicier?)

I came across an assortment of notes, ideas, and pictures I have had tucked away in my well-worn (and much loved) copy of Living Juicy: Daily Morsels for Your Creative Soul. I must have jotted down the following hand-written snippet 5 or 6 years ago now:

I never half ass anything. If I make an effort, I give it everything I have. I don’t expect that from others but that’s just how I roll. Anything worth doing is worth doing well.

Time changes us. Life changes us. Every passing moment changes us (whether we recognize these changes as they are happening or not). It’s nice to be reminded though that sometimes, some things don’t change (or change so little that the change is impossible to notice). This little snippet that I’ve had tucked away for all these years still rings every bit as true as the day I put the ink on the paper and that makes me smile. There are realizations that I’m making day by day that haven’t ever occurred to me (or occurred to me so long ago that they seem brand new and shiny again). It feels like it was longer than a lifetime ago that I was good – not just to myself but for myself. It’s been far too long since I required myself to be gentle (or at least more gentle) with myself.

Time has changed me. Life has changed me. Every passing moment I have lived has changed me (whether I recognized these changes as they were happening or not). But this truth has a foundation strong enough to have weathered time and life and more passing moments than I will ever be able to count. I dare say that I think this is progress.

Wednesday Comes After Tuesday and Tuesdays are Blue but Never Pink

(Sidenote: I wrote this several years ago and stumbled across it again recently. I’m posting it here because I rather like it. Enjoy!)

I am behind at this because there hasn’t been anything to say, but really there’s been a lot to say and no time or motivation to write it down. Now it’s all just a lost block of events that will only be meaningless until one of them accidentally changes the world. This was supposed to be a Reflection paper, however, once I started writing, the words just wanted to come out without a label, and so… I allowed them.

Adrift as I may be, I am still moving. This has become my mantra. Without knowing any behind-the-scenes details about myself, you probably can’t appreciate how monumental feeling and believing this statement really is.

I never know things are out of hand until there are crumbs on my shoes. This makes no sense until you lean in a little.

I’ve come to know I am a reactor that takes in more than it refuses and I can still make everything unlivable for the rest of human history including the Sheik of Budapest.

And I wonder, of the things I’ve done, who among you really wants to know? I wonder, what absolution do you bring to the table? I don’t seek solace in churches I’ve never bowed in before and I’ve never asked anyone I don’t know for anything. So how dare you state, “Let’s at least hope you’re a better writer than you are a mother.”

I’d never admit it out-loud but my face felt sunburned on the inside when it was said.

If you want to know, I might tell you, but please remember I am under no obligation of the sort. Maybe I can accept being a gossip and maybe I can’t. What time is it?

That being said, I am doing fairly well in my own convictions for this year (thankyouverymuch) and I’m sorry there are people who don’t take me seriously… or they take me too seriously. I cannot comprehend their feeble minds.

The bottom line of anything that has to do with me is very simple: I don’t owe you anything and I expect that same amount of obligation in return from others. Why some people would expect me to so much as tell them it’s dark outside is beyond me. I am many things, but stupid is not a trait among them.

It’s kind of funny the sort of people who take me at the face value they assign to me and then get hunched over when I don’t give them what they want to hear.

I’m happier now than I think I have been in the last five years. Considering that last month I was borderline (no pun intended) miserable, I can see that it might seem like trompe l’esprit and I wonder that myself. If it is, then I’ll get over it eventually and start again. If it’s not, then this is what I’ve been waiting for and I pity the foggy bastard who schemes to take it from me.

I don’t know exactly what changed, or when, but it DID. Sometime, maybe while I was sleeping, a switch flipped in a closet somewhere over the international date line and there it was…

The point is, I feel different and I can feel a difference in things around me.

I am calmer and things are slower. I like that but I didn’t expect that I would. (To note, I like arrogance as much as the next girl but there has to be something there to be rightfully arrogant about.)

I have a lot of things to do and I don’t even remember when I stopped doing them… and in some cases, I never stopped, I just… let them go a little bit which was still too much. It was the catalyst that set me on a collision course that managed to encounter a few tailspins as well. I may regret that for the rest of my life but it won’t be the only thing.

If it’s worth so much to anyone to wag their tongues about what I am and what I’m not and what I say and what I don’t, then the generous thing to do would be to let them have at it. Obviously they have so much going for them that they have time to spare and who am I to fault anyone for that?

Of course I will fault them, because I can criticize anyone for anything, but I’m not going to put myself into a winch knot over that fact.

Not being liked, not holding the respect of people I don’t care about, and not fitting the criteria they themselves assigned me won’t make me vanish into thin air. I still exist and I want to say I’m sorry that’s such a bitter pill for people to swallow, but I’m really not sorry. I kind of gain gratification from knowing ten years from now, I’ll still prey upon their plural-but-very-singular minds and they’ll still have something nasty to say in my memory.

That, gentlemen and ladies, used to be what it was all about and nearly regretfully, it’s not anymore.

I didn’t see “the light” or find Jesus or get taken aboard Zenu’s alien spacecraft for probing… I am still me, I just really don’t have a problem with being “me,” (at the moment) and it feels like a good thing to be alive. And really, who wouldn’t I share that with?

It would be nothing short of criminal not to run it for all it is worth.

Do or Die

Tomorrow I am trading in my corporate title for a domestic one. All the deets coming up…

The Arrival’s Gate

“Whenever she rolls over, or kicks, or stretches her body in a way that makes me remember she’s there, I instantly see her as a naked, wiggly baby. She has a head full of dark hair, she has light coloured eyes, and she has fair skin (all of this I’ve already talked of), but she has your eyes. She has your smile.”

Head full of dark hair? Check.
Light coloured eyes? Check.
Fair skin? Check.
Your eyes? Check.
Your smile? Time will tell but I am confident.

Our daughter came rushing into the world on May 27, and she is every bit as beautiful as I imagined. Perhaps even more so.

Her birth story will be forthcoming (and soon) although it’s a story I’m not likely to ever forget.

Dear Boy,

Thank you for everything that you’ve done and continue to do to make all of this possible. I love you beyond what words can ever hope to express.

And so does he.

As we (my stepson and I) were driving home from me getting him so he can spend the weekend with us, he piped up with a small voice from the backseat. “Jew-wee? Do you love me?”

I glanced into the rear view mirror to look at him and said, “Yes baby. I love you.”

“Jew-wee? I love you most.”

It was all I could do to not stop the car in the middle of the highway to squeeze him as hard as I could.