One Less

 

Whenever I go out in public, I inevitably get stared at. Mostly by adults... kids tend to ask the adult with them what's wrong with me or why I use whatever mobility aid I have for the day. I haven't been going out much in the last year due to my high risk status, so mostly just staring as I head into the chosen medical office of the day (the few people I see at rowing are used to me 😉). The other day, I realized I've been dreading the moment a kid asked their parent about me.

I realized it as a little girl behind me in line at the post office asked about me. Usually, parents hush their kids' questions fearing I'll be offended by a child's curiosity, their desire to understand the world around them. I'm something they've probably never seen and quieting the question makes me (and others who are disabled) something to fear, someone to stay away from. While I hope the parent explains later, I like to catch the kid's eye and smile at them; it's not much, but I hope the simple gesture shows them there's nothing to fear. And luckily, when I'm using my wheelchair, I'm more at their level than their parent's. Sadly, I can't do that with my mask on.

Anyway, on this particular day, I was using my cane and leg brace. The little girl asked her mom "what happened to her? Does she need help, can I help her?" (I was already at the counter, I think she saw me almost drop my cane) While my heart burst at how adorable that was, her mom answered her quietly, "it's nice of you to care, but it's not our place to know what happened to her. And I'm sure she'll ask if she needs help, just like you like to try things on your own before asking for help." In case you're wondering, that was a great answer. Care about other people, but don't pry into other people's business; point out our similarities while also encouraging autonomy. 

By simply acknowledging her question and pointing out how we're similar, she made that little girl one less person that will stare at me just for being out in public with a wheelchair or a cane. One less person that will think I'm amazing for going to the store on my own (seriously, adults have cheered for me). One less person that will run to hold a door for me, surprised that I'm already through by the time they get there. Most importantly, one more person that will see me as a person, not the wheelchair I use to get around or the cane I use to hold me up.

Yay for Supplements!

 

I just want to take a moment and thank my recent doctors for being so open to offering supplements. I don't know if this is a change in doctors or just from being in a healthcare system rather than being covered by regular insurance, but I think it's awesome.

I'm going to add a disclaimer before I go any further; this is definitely NOT a med shaming post. I take equal amounts of prescriptions and supplements. Take whatever combination is necessary for you to improve your quality of life. And that can only be decided by YOU and your DOCTOR. Not some random jackass on the internet that has the cojones to tell you how to live your life. And definitely not some "well meaning" friend or family member that "doesn't think you need that", without a medical degree or full knowledge of what you go through.

Give me a moment to climb down from my soapbox... and let me back up a bit..

Years ago, when I met my primary, I was surprised that she aimed straight for natural medicine and checking if I needed supplements. I actually thought it was a reaction to my resistance to taking my "as needed" meds. But then she told me she actually went to a class to learn more about supplements. And *gasp* wanted to try things like acupuncture and chiropractic to fix things or figure out what's wrong rather than just throwing meds at symptoms.

Then I met my pain management doctor last year. Admittedly, I had been afraid to go because I didn't want more and/or consistent pain meds. He ended up being overjoyed that I was overjoyed that he wanted to start with supplements. And he gave me a list of them to give me a better chance at finding one that worked for me so we didn't have to skip to nerve blocks (nerve pain meds have been horrible for me in the past). 

Most recently, my new GI doctor spoke a long time with me about my reinvigorated GI issues. She was happy I fully work on all the free treatments (exercise, diet changes, reduce stress...). She then gave me a supplement suggestion to try first, and a prescription to try if that didn't work. And we'll regroup in a couple months. So far, the supplement only causes one side effect I don't like, but it's definitely not bad enough to convince me to try the prescription. I usually get much worse side effects from meds.

The thing is my prescriptions are absolutely necessary to keep me alive and functioning. My supplements, however, allow my body a better opportunity to do what it's supposed to do, to work efficiently, to help repair some things to prevent needing more meds. This last year has been the first since I was 13 that I didn't constantly need anti-inflammatories and pain meds. Or, more accurately, I haven't had to fight with my doctors about how I shooooould be taking them, but don't want to, and living at a pain level of 7 is just fine! I live at level 4 now and will freely admit that living at 7 was stupid... I wouldn't change the choices I made, but I do wish someone had thought to send me to pain management much earlier.

So I Made One

Five years ago, I got frustrated while looking for a triathlon shirt. I was doing something new and awesome, and wanted everyone to know about it. Especially once I finished my first triathlon. The problem was every triathlon shirt did not depict what I had actually done because I used a hand cycle and a racing wheelchair. Paratriathlon. There weren't any shirts for that.

So I made one.

That turned into a bit of a crusade of adaptive sports... wheelchair basketball, wheelchair lacrosse, sitting volleyball, wheelchair tennis, para archery, para powerlifting, para rowing. They're available as shirts and decals in my various Team Tsunami shops.

I also ventured into cartoons, then fun wheelchair, cane, and chronic illness designs. I get messages from customers that are so happy they found my shop, that I made some shirts for their particular sport or that I have some fun with my chronic disorders.

My most popular design is the standard wheelchair icon with a mermaid tail; when a friend heard the basic treatment for dysautonomia (more salt and water), she decided that there's nothing wrong with us, we're just displaced mermaids. I loved it and decided the mermaid theory works for many disorders/disabilities and so my icon was born.

I even figured out how to make wheelchairs for my string doll keychains because I wanted one. And prosthetic legs because a friend asked for one for her daughter.

It's a hell of a moment when someone chases me down to ask where I found my shirt, or my keychain, or the fun sticker, or the fabric for the cover on my wheelchair (yes, I've designed some fabric too!). It makes me so happy that they're excited to have found it, but sad that it's so uncommon that it seems like a freakin miracle that they found it. Other crafters and designers sometimes ask how I found my niche... the honest answer is it found me. I discovered there just wasn't much there. So I made more.