Author Archives: Natalie A

#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.

Bandaids of the week

Sometimes I feel like a walking bandaid advertisement. Seriously… it’s rare that I don’t have at least one bump or blister or cut that needs one. And I’m sensitive so I pretty much azaleas err on the side of covering something painful.

Today’s rally: one big one on my toe that I grabbed from the work first aid box when I realized that the shoes I thought were wide enough for my feet really aren’t (argh! Off to return them and order the wide!), one for my finger where I somehow developed a weird blister thingy overnight (?!)… and one on my finger where I shut it in my work desk last week (seriously, only I could do that!).

I decided that if I had to keep injuring myself… I might as well have fun with it. This week I’ve had boring beige (courtesy of work), striped, polka dots… and Frozen (yep, I did go that far – I wonder if Elsa is staring me down, telling me to adult and let it go?). 

So I might be a bit ouchy… but at least it’s colorful!

   
 

“No one can dictate who you are…”

“Despite everything, no one can dictate who you are to other people” – Prince.

While I can’t say I’m all that knowledgeable about Prince or his career, this post on my Teitter feed this morning spoke to me. I worry too much about this and need to embrace the fact that I have no control over how others see me… and that it doesn’t actually matter to me in the long run, these opinions of relative strangers. What matters is my opinion of myself, and the influence of people close to me. 
 

A Letter of Appreciation to Zappos

If you have weird feet, Zappos is perhaps the best solution ever. Shoe stores can be awkward:

“Do you have anything in size 5.5? No? What is the smallest size you have? 7? No, I won’t be trying that on since it’s… too big?”

Or

“Fits this foot, but not this foot.” <slide shoes in box, slink away before employee returns and you have to explain.

So for someone with foot issues ( in my case, I have a clubfoot so one foot is smaller and wider than the other!) making finding shoes a chore, Zappos is awesome! I’m actually happy they haven’t marked my account as returning way too much… but being able to buy a few sizes and assess or just try on a shoe I liked but they didn’t have anything small enough is wonderful!

This is what a corner of my apartment looks like right now:   

And I’m really happy with finding the pair of shoes that (finally) fit!

  

Dogs Just Gotta Have Fun

It’s actually quite surprising how often I hear “does your service dog ever get to have fun?”… common sense would dictate that of course he does, but apparently his serious working demeanor (wiggly tail aside) leads people to believe that he doesn’t get to be a dog.   
I assure you, this dog has more toys than any one dog needs, 3 beds in a one-bedroom apartment (not including the couch and person-bed!) and a ridiculous amount of attention and spoiling. Of course he deserves it all (and more!)

 
Dog parks are a no go for my particular situation, so getting to go to the humongous Gittinger Park after a chapter planning meeting in Santa Rosa yesterday was a treat. He only ran around for about 5 to 10 minutes, but it was a very happy run with some of his assistance dog and breeder friends. 

  

“Cashie, HERE!”

 

Packing with PillSuite (sponsored post)

Packing medicine for trips can be kind of a pain. So many choices: to bring the bottles or not? to sort by med or sort by date? how much extra to bring?
As part of the Chronic Illness Bloggers Network I was given the opportunity to test out a product called PillSuite which aims to help with some of these issues.

PillSuite comes with three things: a pill sorter, baggies, and a sealer for the baggies (along with batteries for the dealer, which are included).

I’m going on a short weekend trip, so I sorted my pills into 5 daily slots – I took out the two things full of vitamins as I realized I take one a day so that didn’t make much sense to sort them together!

From the sorter I used the funnel to put each evening’s pills in one Baggie, then sealed it using the cute green sealer (I love the colors they chose!)  
The process of dealing them took a bit of getting used to – thankfully you can re-do it to get the seal complete if you don’t get it right the first time.

I made a Baggie for each evening of my trip, and only have one thing to think about – I need to take one pill half an hour before the other two so will need to carefully store the other pills for a bit.

I’m interested in testing out the baggies during this trip, and will edit this post in a few days with a review of how they work in practice!  

I think this will be great for some trips but won’t replace my trusty resealable tiny baggies for some uses.

UPDATE: I used the PillPacks for my 4 day trip, mostly with success! I had a few that didn’t really close al the way, but I think that was really user error instead of an issue with the sealer itself! It was a little tricky with my medicine regime, since I take them at two times per night and the PillPacks aren’t resealable – but I made it work! Overall this is a fascinating and useful product. Love that they’re biodegradable, too!

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!

 

Bursting the Happy Healthcare Bubble

 
When you are at the NIH Clinical Study for a Natural History Study, your healthcare life is pretty darn good (well, besides the fact that you have medical stuff going on that landed you there in the first place!)

Every doctor you see in the course of your study protocol is an expert. Every doctor you see knows your rare disorder. Every doctor you see is interested in you and your overall health – not just their specialty.

One can get quite spoiled.

That’s all the preface to my newest medical slight debacle: I refuse to start a new treatment for a newly-diagnosed condition without seeing a specialist first. Like… on what planet does that make sense for patients?! Do people actually agree to that?!

I know I feel icky. I know my thyroid numbers were weird. But that’s the extent of my knowledge… and there’s no way I’m blindly starting a new-to-me medicine without at least seeing a doctor! <ends big over dramatic sigh>

I fear (but also love) that the NIH has thoroughly spoiled me. I deserve it. Everyone does.