Category Archives: ankylosing spondylitis

29 More Gifts for Someone with Ankylosing Spondylitis

If you purchase something through a link in this post I may receive a small commission from Amazon.com or Zazzle through their affiliate programs. I am not employed by these companies and these opinions and recommendations are solely (and gratefully!) my own.


A small gift can make a big difference, especially as someone living with ankylosing spondylitis (AS). In 2017 I made a list of items and gadgets that help me live more easily. As my health worsens, I’m constantly discovering gadgets, so I made a new list. This can be a useful guide for year-round giving, not just during the holidays.

I use all of these products myself, so I feel comfortable recommending them, but that doesn’t mean they will help everyone living with AS.

One of the most damaging things you can do is try to help someone the way you think they need to be helped, without first finding out what would actually help. So ask some sneaky questions to find out if a certain gift would be welcome before you surprise your loved one or friend with a box of goodies you think should help them.

Pro-tip, include gift receipts so they can exchange things if need be. Even better if you include a funny card that says,

“You’re incurable, I’m clueless, so trade this stuff in if I missed the mark. After all, I can’t even pronounce your disease – you’re the expert of your body, and I just want to help. BeingCharis told me to write this.”

Continue reading 29 More Gifts for Someone with Ankylosing Spondylitis

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The Disease Everyone Loves to Hate

Content note: this post discusses the topics of suicide and death.


I had a pretty good treatment day recently.

I didn’t even get upset that a new nurse tried and failed to get my infusion started. What’s another blown vein, anyway?

The infusion team was excited because they thought they’d seen a picture of me on a Facebook ad (it wasn’t me) – they’d even saved a screenshot to show me. My conversations with the nurses were light-hearted before I transitioned into catching up on emails.

I hid myself in my favorite corner where I can sometimes pretend I’m the only one in the room and I nearly forgot I was in a building with the word “cancer” all over the front of it.

I love the infusion team. And I better love them – these are treatments that I’ll need for the rest of my life unless this drug stops working or a better treatment shows up. I’m what you call incurable.


But as I was leaving my appointment I almost walked into a vendor table being set up for an event. On the table was a sign reserving it for a lingerie business. And then my eyes caught something else: pink.

Pink was everywhere. Rose petal fabric. Pink shirts. Pink everything. Pink was in the air. It smelled pink.

October. Breast Cancer Awareness Month.

I can’t explain how crushing it was to leave my better-than-usual treatment, then turn the corner into an explosion of pink for an event that screamed, “You’re in someone else’s space.”

I have Ankylosing Spondylitis. The infusions I receive for my disease happen in a medical complex named Mercy Cancer Center. Every time I enter the building I see the name in big bold letters above the door and behind the check-in desk. While I wait for my appointment I see poster-sized lists of support groups and special events specifically for people with cancer. Continue reading The Disease Everyone Loves to Hate

Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week

I modeled in New York Fashion Week recently.

Some might say it was a dream come true, but for me it was someone else’s dream I fell into. Alice didn’t expect to fall down a hole into Wonderland, and I didn’t expect to be diagnosed with a lifelong progressive disease when I was 26.

Around the time I was diagnosed with Ankylosing Spondylitis in 2013 I began modeling. Neither the diagnosis nor the modeling were expected. One happened by an invite I almost grudgingly accepted from a friend. The other happened via email from my estranged father. You can figure out which was which – at least I hope you can.

When I began modeling I had just begun hating my body. It had betrayed me by getting sick after decades of playing soccer, running marathons, and being a professional mover; none of which I could continue regularly after I was diagnosed. Being an athlete had been my whole identity. Suddenly I wasn’t anymore, and not by choice.

Being in front of the camera helped rebuild self-esteem and I began to love my body again, which surprised me. But, even more than enjoying being photographed, I uncovered a treasure trove of humanity behind the scenes. When I began sharing my story with Ankylosing Spondylitis (AS), I found many models, hair and makeup artists, designers, and photographers with their own stories of chronic disease.

We are by and large fed stories of health, ability, and perfection by the polished images we see of models on the runway or in magazines. We tend to believe models are perfect, healthy, able beings with happy lives. And in an industry known for celebrating a very narrow, specific type of beauty and body, nonconformity is ill-advised if you’re in the thick of it.

I learned quickly how easy it is to feign – yet also truly find – confidence and identity when performing for the cameras.

Image by Glenn Jones/Ikona Photography ©2014. My first in-studio photo shoot ever. I had no idea what I was getting myself into.

But anyone who knows me knows I’m not known for my conformity, so it wasn’t long before I was being myself. Continue reading Raising Awareness on the Runway | I Took Ankylosing Spondylitis to New York Fashion Week

Worth All the Regrets | My Third and Sickest Burn

 

Burning Man saved my life when I desperately needed a reason to keep living with chronic disease and disability. I owe it for reminding me what it means to be a whole human.

I return each year to the event in Black Rock City, a city that rises from the dust and becomes Home to around 80,000 temporary neighbors for 8+ days each summer.

Yet I risk a lot by simply showing up because of my Ankylosing Spondylitis (AS).

My medications severely dehydrate me, I’m at greater risk of sunburn and heat stroke, and symptoms can flare without warning especially if I push too hard. I don’t know what it’s like to not have pain; inflamed lungs make breathing difficult even without inhaling fistfuls of dust; debilitating fatigue can suddenly overwhelm me; and my body is weaker every year, making it difficult to explore without a chaperone lest I become unable to make it back to camp.

In a city where survival is part of living, my decision to be there is radically dangerous and bold.

The reality that every Burn could be my last as my body deteriorates is an unsettling feeling. I don’t want to stop going to Burning Man, but I also fear the inflated odds that I could have a health emergency in the middle of a desert with no access to cell reception or internet.

And during my third Burn, those odds almost won. Three times. Continue reading Worth All the Regrets | My Third and Sickest Burn