Author Archives: Natalie A

Caffeine, Canines & Camaraderie

This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.

Sometimes I majorly fail at self care. I have things to do, work to do, lots of deadlines and should-do’s in both my work life and other life (which isn’t work but certainly feels like it sometimes). But I try. So, going in order with my alliterated list (because, really, alliteration makes everything better).

Caffeine


I love my coffee. Whether it is fancy independent roasters or your run of the mill Starbucks or something else (well, nearly, I am admittedly a coffee snob!) my coffee makes me happy. It also helps me with fatigue and I swear it helps with chronic pain – or else it just makes you so buzzed it doesn’t matter as much! My morning is made by my morning, and midmorning, coffee. I’ve learned that I have to be careful, so part of my self care is to stay away from the coffee after 1 pm if I want to sleep. Because actually being able to sleep is good!

Canines


My Canine Companions for Independence service dog is s huge contributor towards my self care! He helps me conserve my pathetically low energy by opening doors, carrying things, and picking up all sorts of stuff! These are all things I can do myself but that take a tremendous amount of effort and energy. And using that energy means that I have less physical energy for other things. And honestly, nothing sucks as much as having lots of mental energy but no physical energy. That’s a recipe for self-pity. My dog, in his role just as a dog and not as a service dog, is also paramount to my mental self care! Animals are awesome in this way. And yes, an equine is crashing the canine party because that’s also important to my self-care. The physical and mental exercise I get from riding are life-changing.

Camaraderie

For me, a connection to others with chronic illnesses and disabilities, both my particular condition and others, is vital to my self care! It is reaffirming and sometimes life-changing. I get this connection in many ways – through the groups dedicated to my condition, from cross-disability groups, from my service dog group, and from conferences such as MedX which bring together people of many different backgrounds, both epatients and supporters, all interested in self care through education and empowerment and working together. The rush I get from the interactions I have with people who have experienced what I have is vital.

Having Said All This

Somehow this post makes it seem like I have everything in control with my self care. And… I don’t! I push myself, putting way too much on my plate – and then regret it! But self care and relying on what I outlined above are goals I’m always striving to achieve.

Photo: Rick Guidotti

My name is Natalie, and I ride horses. I also have Moebius syndrome.

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What’s the use of health data…

if you don’t interpret things?

I’m a librarian. I like knowing stuff, or having it at my disposal if I need to look it up. Therefore I am inherently a fan of having access to a bunch of my medical info…except when there isn’t a good explanation to go along with the data.

Finally got the blood tests done (that were a month overdue, my bad!) Got an e-mail literally the next day with a handy link to the results: yay! They even came with charts. Yay!


So…layman’s terms: I know my numbers were too high last time. Are these numbers low enough? Who knows…because not only did the online link to the test results not contain any kind of explaination.

I could consult Dr Google, but I’d prefer not to (because I know how unreliable that Dr Google can be). So I’ll wait for an update from my doctor and meanwhile mull over the value of patient information without actually telling us what it means. 

The Wonder of No Pity


It’s no secret that I have a seriously conflicted relationship with the upcoming Wonder movie: Yay, movie about craniofacial differences! Boo, you couldn’t find an actor with TCS to do it? Yay, so many of my favorite actors (Daveed Diggs!)…

And a big boo to their marketing campaign. The existence of someone with a craniofacial condition (and hell, in this case it’s a fake craniofacial condition) doesn’t exist to make you feel all warm and fuzzy. A mother and son interacting when the son happens to have a fake!craniofacial condition shouldn’t be impressive.

This thinking comes from the thinking that disability is this awful thing that must be avoided, overcome and conquered…instead of something that just is. 

I actually thought the book did a pretty good job of walking this line…but I guess we can’t expect that much for Hollywood. It’s too bad because this is a really good opportunity to raise awareness of craniofacial conditions that’s potentially being wasted in sentimentality and mushiness.

Hoping the movie is better than the marketing.

Where rare isn’t so rare


It is a profoundly strange experience, going to a place where your (nearly) one-in-a-million condition is common. Strange isn’t bad, it’s just…weird!

Last weekend, nearly 120 people from infants to senior citizens gathered for the 12th Moebius Syndrome Foundation Conference in Long Beach. To put it in perspective, under 100 people total (and 20ish with Moebius) gathered for the first Conference in 1994.

It’s weird to look at a (figurative) lot of people who look somewhat like you. It’s discombobulating. But good.

Of course the sessions and everything are great and the information-sharing is incredible, but the true value of a conference for a rare disorder is the face-to-face relationships you form. 

When you go home and real life intrudes things get filtered, Moebius is important but not as important as work and the day-to-day routines, so in a way making a weekend all about Moebius is important for all involved.

That was incoherent. But something slightly sappy but too exhausted to form coherent sentences is my post-Conference train of thought right now.

to quote the incomperable Rick Guidotti

Purpleness 

It is a good thing I like purple. Because I (well, minus the three days of work this week) will be both literally and figuratively awash in purple at the Moebius Syndrome Foundation Conference.


Found this graphic on Photofy (love that app!) and, well, if purple is an idealistic color I like that color for a non-profit, since what we’re doing is really an idealistic venture. Sensitive is of course good too. Working with people of all different backgrounds and perspectives is a great exercise in sensitivity! Creativity is where I’m most happy. Seriously, give me something creative and I’ll go overboard in the best way. Elegant? Well… I try. So I like it!

Thank you someone in the early 90s for choosing one of my favorite colors for “my” Foundation. At least it’s not…burnt orange or something like that.

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…

These Boots Were Made for Walking: GIFfing the Dog

Sometimes in life you need to do ridiculous things like GIF the video you snapped of testing out the dog boots. I assure you that he did start walking normally pretty soon after this. I think we’re ready for LA in a few weeks – and Disneyland again!