Uncategorized

Back brace as fashion statement

My favorite brown pants. Black v-neck. One of my favorite sweaters that I can only wear when it’s sort of chilly so it doesn’t itch but not too chilly that it’s not warm enough. And an Ace bandage back brace hidden beneath it.

That’s what I wore to work today.

And that is how I feel I live my life right now, not necessarily hiding things but just not having enough time, mental energy, willpower, who knows what to address.

I can get it together to get to work on time, have successful work days at my new and sometimes challenging job, do the volunteer commitments I have and have a bit of time for other fun things… 

But sometimes I wish I could approach everyone I see and tell them that I hurt right now and everything I’m doing is informed by that. I have no idea what that would actually get me, since I abhor unnecessary sympathy – but maybe a bit of understanding?

Standard
Uncategorized

Red, Yellow & Blue

Spent the Fourth of July weekend (an actual 3-day weekend for me!) with my yellow boys who both rocked the blue, and humored me when I added some red to the mix!



I hope the paw on the flag isn’t disrespectful. It was awkward holding it, sooo…

Readying myself for three days of work + one day off + one day of work + one day off + three days of work = Los Angeles for the Moebius Syndrome Foundation Conference for four days (really a working vacation if you can even call it a vacation) then Disneyland for my 1 day mini-vacation.

I’m tired already and this 2 week stretch hasn’t even started…

Standard
Uncategorized

Will Work For Coffee: Self-Care At Work #sponsored

Apparently I have an inordinate number of pictures of coffee on my phone. I also have a ton of photos of my dog, but that at least makes more sense than my strange compulsion to photograph my work coffee habit!

I am a firm believer in the power of caffeine to cure many of the ills of life, and especially the ills of trying to work with a chronic illness.

And I’m only saying this somewhat tongue-in-cheek.


I am a firm believer that caffeine is the best medicine ever. Yes, it’s a tad addictive and rather expensive (which is why I most definitely do not add up what I spend on my coffee habit!) but it’s often literally the only thing I can do in the morning to get myself up and going and feeling filled up. 

Iced coffee, drip coffee, espresso drinks… some combination of all of these is a big part of how I survive my full-time job with a chronic illness. 

I deal with a lot of pain from my neuromuscular disorder and fatigue from my autoimmune disorder so am always looking for ways to help myself in these ways. Some things I do are pretty self-explanatory: getting enough sleep is important! same with eating well and all that stuff.

But some other more novel things help, too: 

Enter: Cassius, service dog extraordinaire! I’ve been partnered with a service dog for three years now, and he helps me immensely with reducing pain, conserving energy, helping me navigate my commute, and providing an awesome distraction from my pain during the workday. He can happily pick things up for me when I drop them, offer counterbalance going up and down the many BART stairs I maneuver on a daily basis (because the elevators are slow and nasty. Bad combination!) and opening and closing doors, drawers and cabinets for me.

During my workday I try to take a decent number of breaks to either plop down in the breakroom or get outside and enjoy some fresh aid and to change up what I’m doing, luckily my job at a library really allows for doing a bunch of different things throughout the day. This helps me alternate what areas are less painful than others. It’s facetiously better to have many things hurt a little than to have one thing hurt too much!
Lastly, taking a bit of time for myself to devompress after and before work is vital – whether it’s reading (it’s quite nice to have access to thus ands of books all the time!) or playing ridiculous computer games (Frozen Free Fall, anyone?) or hanging out with puppies and horses on my hours and days off is vital to my sanity and health.

Working is important to me. It means that I’m contributing to society, making my mark in the workplace, and (every so often) changing people’s lives – and sometimes their perceptions of what people with disabilities can accomplish. I don’t necessarily focus on that, but I don’t argue with it when it happens!

For more tips on Self-Care, check out http://selfcaremvmt.com/

Standard
Uncategorized

Feedback

Work has been stressful lately. Won’t go in to a lot of details… but it just is. I started doubting things, wondering if there is something attainable and better that is also realistic. I started looking at other opportunities.

But yesterday evening, I was out to dinner with my parents at a nice restaurant near my apartment (never mind the fact that I’d come from the barn in the middle of a rainstorm – yes, this horse has a nice dry stall…she just chose not to partake of it) 

  …and one of the frequent patrons came up to my parents and I at our table and complemented my service (and my speed, which I thought was hilarious). It was slightly embarrassing, but also gratifying!

Working in public services is not always easy. We get yelled at a surprising amount. Sometimes people are entitled and rude and just completely unthinking about the realities of a public institution. It’s easy to get jaded. I doubt myself too much.

But then things like this happen and make it worthwhile. This doesn’t mean that I am not still searching for new, different opportunities… but I sure do like getting legit positive feedback from patrons!

 

Standard
Uncategorized

Happy New Year

This past week at work I used/taught/struggled with/enjoyed/swore at/loved the 3D printers we had on loan. I love this kind of tech stuff, but felt a bit pressured by our patrons (especially the kids!) when it just. didn’t. work. right! And since we’re dealing with donated technology that’s a bit old (yes, in tech a 2-year-old product is old!), it’s not glitch-free.
I like having something (well, more things!) at work thatI’m the go-to person for. It’s satisfying.

And my test projects, of course, somehow managed to include dogs… some more successful than others!  

  

I can’t formulate any resolutions that are coherent enough and practical enough to warrant a resolution. I think I’m on the right path for most things, and working through/thinking about my approach to a few things. I hope I will be clearer about what I am uncertain about in the next year (what a mouthful!) 

  

I swear… he’s happy even if he looks stoic. (don’t worry, the hat only stayed on for the photo!)

Standard
Uncategorized

ADA25

Fittingly, I will be spending part of this 25th Anniversary of the Americans with Disabilities Act at work.

   
It is a good reminder for me to step back from obsessing over career trajectories and picking up more shifts and so on to think about the fact that it is in part because of the disability rights movement that I am working in the first place – that I was able to attain the education that enabled me to get this job in the first place, that such things as “reasonable accommodations” in the workplace even exist.

I don’t work in the disability field, and that is partially thanks to the ADA. Even in the mid-2000s, the operating assumption was that I would choose that path. The ADA showed that people with disabilities can and do work in every sector, in every environment. That is part of the impact of the ADA.

So that is how I will celebrate, in the mundane rhythm of work and life. As everyone should be able to. 

Standard