Category Archives: Dear You

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

Better late than never.

My oldest boy turned 12 years old (born on the 4th of July!), the other day. Rather than just slapping on a normal gift tag, I decided to create one, specially for him. I went through hundreds of pictures in order to add a picture from every single birthiversary he’s had so far.

Sadly, I realized that I have zero pictures from his 4th birthday (because his 4th birthiversary just so happened to be celebrated while he lived in England with his father, so naturally, I never received any pictures – if there even were any). Sidenote: Additionally, I found that for his 5th birthiversary celebration (also, while he lived with his father in England), I received a total of 3 pictures of his celebration, and (again), zero pictures of this 6th birthiversary. (If you guessed it was because he was still living with his father, you’d be absolutely correct.) /sidenote.

Regardless of this, I still managed to create this, something that I, myself, was proud of. I’m happy to report that Todd really enjoyed it too. So much so, that he wants me to reprint it so I can frame it and hang it in his room.

Happy 12th Birthiversary, Todd. I love you more than you will ever be able to measure. ♥

An Open Letter to Coraline “Jones” Dukes

Today, you turned 2 years old. I am both astounded and horrified that you’re already another year older.

Maybe it’s because it’s been so long since I’ve had a 2 year old that I wholeheartedly believe that you are an absolute genius. (Or, it may just be because I’m your mother.) Let me list the ways:

    • You know and regularly use close to 200 “signs” (in American Sign Language).
    • You know your colours (although you still get pink and purple confused sometimes) and can sign them all.
    • You can count to 10, both out loud and with sign language.
    • You recognize all of the letters of the alphabet, along with their respective signs.
    • You are already an amazing gymnast. You regularly climb on top of your little car all the way up to the handlebars, then proceed to balance yourself on the handlebars on the tiptoes of ONE FOOT, just to reach things we intentionally try to keep out of your reach. (Like the television remote, wet wipes, vodka, whatever.)
    • You idolize your big brothers. You always walk around the house asking (i.e., yelling) for Todd while he is at school during the day. You get so happy when you see him walk through the door because you know that means it’s time to play. You do the same thing with Logan.
    • You are an incredible climber! More than once I’ve caught you sitting in the middle of the kitchen table because you’ve climbed up onto a dining room chair to reach the table’s surface. (Our kitchen table approximately 4.5 feet tall.)
  • At your party today, you single-handedly astounded Great Papa by counting to 10 out loud. You shocked Papa and Gramom by naming all of the coloured polka dots on the wrapping paper your gift was in. You made Great Grandmama laugh at the way you are so particular sometimes (OK, all the time).

    But here’s the news of today’s heartbreak: When I came to scoop you up out of bed first thing this morning, instead of allowing me to do so, you threw your leg over the bar of your crib and shimmied down to the floor, all on your own. It was gut-wrenching to witness this, but it was also incredible to see how confident you are in all of your amazing, glorious, precocious, 2-year-old self.

    I couldn’t be any prouder or more awestruck at how lucky we are to have you as our daughter.

    I love you fiercely, Coraline Grayson Dukes. Happy 2nd Birthiversary.

    What a crazy random happenstance!

    Thank you for giving me one of the best birthiversary presents I’ve received in a long while. The mix tape you gave me makes me smile every time I start my car.

    Aye <3

    Despite everything, I was thinking the other day about how glad I was that things have happened as they have.

    I would hate to have spent the rest of my life wondering what could have been and thinking of you as the one who got away.

    I love you Derek Marshall Dukes. ♥

    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.

    Be Still My Heart

    And I thought, be still my heart
    This could be a brand new start, with you.
    And it will be clear
    If I wake up and you’re still here with me in the morning.