Category Archives: spondyloarthritis

How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

So I bought heels and kind of learned to walk in them.

And then I became a fashion model. I swear it wasn’t planned. During my first photo shoot the photographer had to teach me how to pose gracefully without falling over. Continue reading How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

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16 Things I Take to My Infusions for Ankylosing Spondylitis

FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item.


When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?

Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).

Here is my list for infusion days:

Continue reading 16 Things I Take to My Infusions for Ankylosing Spondylitis

27 Gifts for Someone with Ankylosing Spondylitis

FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item.


While gift-giving is common for special occasions and during the holiday season, people living with Ankylosing Spondylitis (AS) could use a little extra love year-round. Here’s a long list of items I use almost daily (I really have used all these items recently)! The prices I included are as of the date this was written:

Hot or cold? 

1. This Sunbeam Quilted Heated Mattress Pad ($70) is a little on the expensive side, but the extra padding covers the wires so you can hardly tell they are there.

2. This moist heat Battle Creek Electric MaxHEAT Pad ($65) is also pricey, but after over two years of regular use mine is still going strong. The cover is washable. Be aware that this pad gets super hot!

3. This style of Hot and Cold Reusable Ice Pack ($7) has been around for a while, but it still works really well!

Things to wear

Continue reading 27 Gifts for Someone with Ankylosing Spondylitis

Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

 

First of all, what is Ankylosing Spondylitis (AS)?

Wait, how do you even pronounce it?

Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.

AS is generally treated by a specialist doctor called a rheumatologist. The clinical treatment recommended to slow down the progression of AS, as stated in the 2015 AS treatment guidelines published by the American College of Rheumatology, is a biologic drug if non-steroidal anti-inflammatory drugs fail (my understanding is that a combination of therapies is common, both pharmacological and complementary). A biologic is a specialty drug made from living cells (biologically, rather than chemically) that, in short, suppresses the immune system. In ankylosing spondylitis, the body constantly attacks itself, seemingly without a real danger present, which causes inflammation and damage. The biologic drugs slow that reaction but in doing so also decrease the body’s ability to fight infection. You can read more about how autoimmune vs auto-inflammatory diseases work here (hint: AS isn’t proven to be autoimmune).

So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.

Scary, huh?


Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.

Continue reading Your Friend Just Got Diagnosed with Ankylosing Spondylitis. What the Heck?

I Told My Healthcare Story at a Press Conference Today

Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.

Two leaders
Charis Hill and Congresswoman Doris Matsui

These were my remarks:


Continue reading I Told My Healthcare Story at a Press Conference Today

What do you use your chair for? How a Lyft driver wore me out.

My phone rang – someone was calling from a Washington D.C. number. I usually ignore unknown numbers, but something made me answer this time.

“Hi, this is *Frank, your Lyft driver. I see you have a chair, will it fit in the back of a regular-sized sedan?”

I’d forgotten I had my account on the accessibility setting. This must have been why the only available driver was over 15 minutes away – Lyft had to find someone who could transport a wheelchair.

“Oh, I’m so sorry, I forgot I had the accessibility setting on. I don’t have my chair with me.”

“Oh…ok. Well, I’m – I guess I’m about 10 minutes away. Bye.”

In my mind I began creating an awkward (or worse – judgmental) hypothetical conversation for when Frank arrived. Continue reading What do you use your chair for? How a Lyft driver wore me out.

Q&A with Charis about her journey with Ankylosing Spondylitis

 

These questions were asked by friends of mine after I was diagnosed with Ankylosing Spondylitis. If you have a question, add it in the comments below!


How old were you when you started showing symptoms of AS?

I was 13 when I first began showing symptoms, although I’m beginning to think I was younger since I had really bad “growing pains” in my knees as a young kid. At 13, my hips began aching and cramping – I recall my friends in their 60s telling me it sounded like arthritis.

When were you first diagnosed, and how did you handle it? 

I was officially (clinically/medically) diagnosed during the spring of 2013, although I knew what it was several months beforehand. I did not have insurance when I found out, so I couldn’t have an official diagnosis until after I found insurance. At the time I would have been charged more for having a pre-existing condition. My whole world was uprooted. I have accepted that I have the disease, but I have not accepted what I have lost and what I am and will continue to lose.

How did it present initially and how were you finally diagnosed?

Symptoms multiplied over time as I aged. In late middle school I began experiencing a dull achy pain in my lower back – it hurt to lie on my stomach and prop myself up on my elbows because it arched my back (that aggravated my pain). In college my back would spasm at night. Severe low back pain began my sophomore year in college, even while I was playing college soccer.

Throughout my life: I would be told by people I sigh a lot, but I did not notice it – it turns out I have always struggled to fill my lungs with air. I was also always a very fidgety person, never able to sit in one position for long.

Some upper respiratory bug caught me in the fall of 2012; it wouldn’t go away. I went to urgent care twice in two weeks for a pneumonia scare and a heart attack scare, but each time nothing was discovered. When doctors tried to give me anti-anxiety and anti-depressants, I did my own research and discovered I had inherited my father’s disease. This was days after my 26th birthday in 2013.

I didn’t connect all my symptoms to the same disease until after I was diagnosed. Continue reading Q&A with Charis about her journey with Ankylosing Spondylitis