My pretty cool looking “normal brain”


I got another batch of information back from my week at the National Institutes of Health, and I really think my favorite quote ever was “patient has a normal brain”… good to know!

Other fun stuff: they couldn’t find a seventh cranial nerve (which doesn’t necessarily mean it’s not there – they did an autopsy on someone with Moebius and found that the nerve was there but went down into the spinal cord instead of into the brain), and that my seventh nerve is hypoplastic (underdeveloped).

Apparently my scoliosis is two or three degrees more than both the doctor and I thought. From the nerve conduction studies where they zapped me, I apparently have no blink reflex (which I knew!), and reduced amplitude in all facial nerve stimulations (maybe that’s why it didn’t hurt that much?)

No information yet from the blood or skin biopsy yet, but I’m not expecting anything since they don’t yet know what they’re looking for!

And lastly, the awesome nurse coordinator for the study (truly a sanity-saver!) sent me these amazing colored views of my brain from my MRI! I think the coolest part is that this was done without dye or anything… no idea what it means, but it’s pretty!

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/

Coordinating bottle colors


True story: I opened up my mail-order pharmacy order, and was thoroughly impressed with the color-coordination of my meds. For some reason known only to insurance companies, I used to get Ventolin way back when, then it turned into generic Albuterol, and now it’s back to Ventolin! I have to admit I like the colors (and once again the thingy that shows you how many doses you have left is genius!). Then I opened up my new thyroid hormone (higher dosage, since my levels were still too high)… and it randomly comes in a pretty different blue bottle! I have to admit I like that it’s different. Who knows why, but it’s nice.

Just a little medical artistic randomness. 

Decisions


I’ve probably written something similar to this before…but I’m thinking about it again. We all go through our lives differently, influenced by internal and external factors. The treatments and solutions for one are not the solutions for another. I can’t tell someone who doesn’t like school that doing well and finding my academic niche was the key to success for me. 

But what about when they ask? How much information do I provide? How do I articulate just how much childhood surgeries affected me and how I dealt with childhood PTSD post-surgery without revealing too much about my inner psyche (because really, how much detail do they want?). 

So I stick to the basics: that reconstructive surgery wouldn’t have worked in my individual situation due to the slight movement I have. I don’t share that I sat in on a conference presentation by the pioneering surgeon at 11 (yes, I was precocious – I also have notes about genetics from that conference) and was scared. I was worried the professionals were telling me I wasn’t good enough as is. That I needed to be fixed.


Luckily I had family and professionals to guide me through that angst, but how do I even describe that beyond the rumination a of a once overly-sensitive, angsty pre-teen?

It wasn’t right for me.

This seems to be the only way I can condense years of thinking about it, but it doesn’t seem sufficient. I want to emphasize that I couldn’t have handled it emotionally but without being like “yeah, I had LOTS of issues!”

I think new surgical methods are awesome and definitely less scary-looking in process (just wish everyone could get insurance to cover them!) and I love that people are getting good results with them and are happy. Would that have changed my decision process? Who knows.

All I know is that I wasn’t ready for surgery and am thankful I had the support I did. But that I am so happy for people who had surgery and are happy. And sad for those who didn’t have it and are unhappy, or had it and are unhappy.

How about: it’s complicated!

Grammatical Disability Humor


Apparently I am unobservant (well, in my defense I rarely go through the public entrance!) because I just noticed this sign outside of my building after almost two years working there.

I saw it yesterday and really found it ridiculously hilarious on so many fronts 

  • First grammatically (yes, I am a nerd): is this ramp safe to use if it is disabled? And, perhaps most importantly, how does one disable a ramp?!
  • Secondly from an accessible design point of view, why in the world is this ramp only for those with disabilities? It’s probably most used by strollers, for whatever it’s worth!
  • And lastly, there’s no way that ramp on the illustration is to code.

So that was my amusement on a Saturday at work. Life with a disability requires a bit of disability humor at times, I think. And that was mine this weekend.

When Snapchat Filters Mock Your Medical Condition

I will be the first to admit it: I don’t really “do” Snapchat. I downloaded it but then just never checked it enough to actually see things, and the inability to browse users without knowing their exact username is maddening. I’ve played around with it a bit and don’t hate it… I just don’t have time to constantly keep up with it.

This week Snapchat came out with a bunch of new morphing filters… One of which gives the impression of one-sided facial paralysis. <<headdesk moment>> I mean besides the more obvious question to me of why it’s entertaining to send weird morphed photos of yourself to friends, it also comes back to the fact that it’s supposed to be funny. And that differences in appearance aren’t inherently funny or things to be gawked at.

I’ve probably written this before here, but appearance differences are kind of a strange medical condition to have. You skirt the line between the disability community and “passing” – but neither are quite right. I’m almost thankful sometimes that my orthopedic and neurological and autoimmune (phew, that’s a mouthful!) issues made it easier for me to join the disability community at a crucial age. 

Appearance djfferences without other impairments aren’t quite embraced as disabilities by some…and since they aren’t thought of as a protected class, it’s not seen as in poor taste do things like presenting facial paralysis as a funny and weird thing you can try on. (Now by no means am I against humor: check out some of David Roche’s material about facial differences).

I don’t think Snapchat will remove the filter, so all I can hope for is that people start to think a little bit before using it. Some great organizations are working towards that goal, and I’m looking forward to what they are able to achieve.

On Wonder & Representation


So apparently the news that the film adaptation of RJ Palacio’s Wonder is gong to feature a young actor who doesn’t actually have a facial difference is old(er) news, but adding Julia Roberts to the mix made it “new” news today.

I’ll admit: my first reaction was something akin to whaaat? How are you going to make this work? Why in the world couldn’t they find an awesome young kid with TCS? I’m sure he’s out there.

My practical side knows why: he’s arguably the best young actor in the right age range, this is a plum part, the logistics of casting such a specific thing… but this raises so many questions about the portrayal and inclusion of disabilities in the arts and especially in film.

To choose non-disabled actors to portray people with disabilities, the industry negates the presence of actors with disabilities (and discourages people from trying). It also suggests that the reality of a person with a disability on screen or stage is not welcome – that the mediated experience of disability through the lense of an actor is preferrable.

And I’m also asking about the real logistics of this: are we dealing with prosthetics? How will they do it and have it look realistic? Or are they going to go really meta on us and do something else?

A line in Wonder says 


and it’s like the culture has taken this too far – by removing the imagination completely by actually removing disability from the discussion in the actual, physical realm.

So we shall see how this turns out. I’m happy this book is out there and raising consciousness and awareness of craniofacial conditions with children…just wish the movie had gone further and cast an actor with a craniofacial condition.

it’s Asthma Awareness Month!

And I can’t resist the opportunity to share a great infographic. Seriously, Infographics make me happy.


Strangely enough, it took doctors a long time to diagnose me with asthma (well, actually, my pediatric pulmonologist didn’t really know if it is asthma or not but if it walks like a duck and quacks like a duck… so the saying goes).

On a day to day basis my issues are happily controlled by a combination of inhalers and a miracle pill that seriously improved my life so much once I started taking it! I went from missing weeks of school to only having a few issues a year. I do have a ridiculous amount of phlegm all. the. time. (so phlegmatic!)

#AbleismExists because…

  • Because I shouldn’t be all too familiar with the confusion people face when they resize someone can have a visual difference and be intelligent.
  • Because the fact that I have a decent job and apartment isn’t extraordinary.
  • Because, for the love of god, ASK before you touch the service dog!
  • Because there’s nothing heroic about living my life.
  • Because many people still equate speech impairments with intellectual disabilities.
  • Because… so much more. But I need to get ready for work, because yes I can and do.