Category Archives: Ankylosing Spondylitis

Day 314: My Body

I spent the summer of 2012 training for my first half marathon and interning at a technology company forty miles from home. Originally I signed up for the Rock n’ Roll Half Marathon in Providence, Rhode Island to stay in shape for indoor track, but I fell in love with my weekend long runs. One year later, I completed my first full marathon in Corning, New York. It was my last race before my first major AS flare up.

For the next few years, I flitted in and out of doctor’s offices and subsequent work-out studios. One month I would be diagnosed with a “weak core” and found myself at a high-intensity training studio; the next month I was told I had uneven hips and yoga would be my savior. I went through brief periods of being able to run and other times where I was in too much pain to walk. My body no longer felt like my own – it changed without warning and resisted any attempts to appease it.

Finally I was diagnosed with ankylosing spondylitis, but running long distances still wasn’t an option. My first rheumatologist was a “non-runner” and didn’t understand my desire to run – although to be honest, I don’t even think I know what I wanted to run.  As a college runner, I’ve hated more runs that I loved, but running had become a symbol of the control I so desperately craved. It was representative of the person I was before the pain and I missed that person.

In the fall of 2015, I ended up in Atlanta with a new rheumatologist. I was put on Humira and my quality of life and mobility improved. .As I crossed the finish line of the Publix Half today, I couldn’t help but have a “weeping willow” moment. For so long, I was a prisoner to my body – it determined whether it was going to be a good day or a bad day – but today my body was my own.

Outfit Details
Top: Nike purchased four years ago for $15 (similar, similar)
Bottoms: UnderAmour gifted eight years ago (similar, similar)

Day 302: My Journey with AS

As most of you know, I have AS (or if you want to get formal: ankylosing spondylitis). When I first was diagnosed, I joined an online support group – which definitely gave me perspective. Recently in the group, they reached out asking for folks to submit testimonials on what dealing with AS has been like. I thought I’d share my video here (mainly because LB said it didn’t make her cringe – I have low standards).

Onto my outfit! Today I was in the mood for a pop of color – so I grabbed my most colorful ruffle top! I paired it with these awesome pants that feel new to me because I just got them hemmed (finally – it only took a year!).

Outfit Details
Top: J. Crew purchased second-hand three years ago for $30 (similar, similar)
Cardigan: Gap purchased second hand one year ago for $12 (similar, similar)
Pants: ThredUp (J. Crew) purchased one year ago for $25 (similar, similar)
Heels: J. Crew Factory purchased 3 years ago for $50 (similar, similar)

Day 297: CRISPR

Today I received the absolute cutest text from my little sister. Apparently her new thing is podcasts (just for a frame of reference, before podcasts, it was ballet – she changes quickly). Recently she heard a podcast about a scientific phenomenon called CRISPR. Basically the SparkNotes version (or at least the non-sciencey version) is that there are these sequences of repeating DNA that are snippets of viruses that certain bacteria carry. The idea is that the bacteria keep these little pieces of the virus after they kill them off so it will be easier to fight them next time. Scientists believe that they can start to insert these ‘fighter police cells’ into organisms, they can help fight certain diseases. Including autoimmune diseases like ankylosing spondylitis. While I’m not going to be fixed overnight, I’m so hopeful. Hopeful that I can be ‘normal’ – that I can not be in pain. I won’t have to fight to convince people that I’m fighting my own physical battles.

Since today was a work-from-home day due to my AS shot, so I stayed comfortable. After all, why wear pants when I knew I wasn’t going to leave the house?!

Sound off: what’s your favorite podcast?

Outfit Details
Top: J. Crew Factory purchased six years ago for $30 (similar, similar)
Pants: Marika purchased two years ago for $15 (similar, similar)

Day 258: Hot Chocolate 15k

Almost three years ago, I was in the hospital with a random hip injury. I was training for a half marathon with my roomie at the time and woke up one night in so much pain I couldn’t move. At first the hospital thought it was an avulsion fracture based on x-rays, which means that the muscles around my hip bone had pulled away a piece of my hip bone. When they drugged me up and I still couldn’t move, they took an MRI and found a ton of fluid in my hip joint. They drained it (with a huge needle I’m told – but I was way too hopped up to know any better). I hung out in the hospital for a few days, then went home on crutches. In my recovery, I missed two half marathons I paid for. Fast forward a year – I still had no diagnosis. I had good days and bad days and due to my bad days I missed a ten miler race (that I trained for) and a half marathon). Almost two years ago, I finally received my official diagnosis: I have ankylosing spondylitis. Since that day, I’ve run my fair share of 5ks and a few little runs here and there. Today I ran the farthest I’ve run in way too long: I finished the Atlanta Hot Chocolate 15k. For those of you (like my mom – hi mom!) who have no idea how far that is – 15k equals 9.3 miles.

Naturally, I’m pumped. I thought I was pretty much retired after this whole AS mess, but finishing this race was a really big victory for me! I can’t wait for my next event (half marathon in March) and to keep kicking this dumb disease’s butt. As an added bonus, I actually felt great on the run today too!

Now this outfit was actually not what I wore during the race, but since I got home and showered, I’ve been in comfy clothes. I just wish I had something Falcons-ish to wear. I’m super excited for this game… RISE UP!

Outfit Details
Top: J. Crew Factory purchased six years ago for $20 (similar, similar)
Bottoms: Stolen from LB (thanks girl!) a few months ago (similar, similar)

 

Day 241: Why I’m 25 and Still Cry About Needles

Ever since I was little, I’ve been terrified of needles. A little while ago, I wrote a blog post on my first terrible experience with needles: I had to go through the rabies shots as a three year old. The rabies shots are a series of six shots over the course of 5 days within a month. Ever since then, I’ve been terrified of needles: I had a full blown panic attack behind the potter plant going into the doctors. I’ve passed out watching my sister get her blood taken. I’ve kicked a nurse (when I was a little too old to get away with that). I made my mom drive 6 hours to be with me when I needed a shot in college.

So imagine my surprise when I found out the only medication that could help with my ankylosing spondylitis was an injection. I begged and pleaded with my doctor – surely in our developed country we have a handy, dandy pill I could pop? Unfortunately our medical community is busy trying to cure cancer or something, because I’m stuck with a shot. After some vague “don’t let your past define you” speech that I think was supposed to be inspirational from my doctor, he sent me home with a prescription for Humira and a link to a how-to video. The video was just dumb – who the heck smiles while sticking themselves with a tube of pain while cheerfully talking about breathing. My first go was bad – not only does the injection last ten seconds (but feels like four minutes), it’s actually pretty painful. Coming from a girl who’s fall off horses, broken bones, and ran a marathon,  I’d rank my Humira shot in the top ten easily.

Now I’ve been taking these shots for about seven months, which equates to about 14 shots. I’ve had good days where I sit still and barely cry when L pokes me. There are bad days when I hide in the closet, shaking and pleading with L to not make me do it. Usually L needs to remind me that I need this shot to be able to function. I wish that taking my shot was a painless, smooth transaction, simple as pouring my morning coffee. I know it’s okay to have fears, it’s okay to fail, and it’s okay to cry.

Outfit Details
Top: Unknown brand gifted three years ago (similar, similar)
Vest: LeTote (FATE Quilted Vest) retails for $58 (exact, similar)
Leggings:  UnderAmour gifted six years ago (similar, similar)
Slippers: UGG purchased eight years ago for $100 (similar, similar)

Day 213: I Live with AS and You Can Too…

I am so glad I get to work from home every-other Thursday. I may like this day better than food truck Tuesday at the office because I can get away with wearing leggings all day. Actually scratch that – I hate the whole getting my shot part of today. No tears today, so that’s an improvement.

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I’ve mentioned it before, but I stay home every other Thursday because that’s the day I take my Humira shot for my ankylosing spondylitis. Last night the coolest thing ever happened – someone reached out on Insta who also had AS and wanted to know more about my journey while she was figuring out her AS diagnosis. I remember when I was first diagnosed with AS, I sped to the internet to find anything that I could. I was so scared and shocked – there’s lots of people with fully fused spines and who are in too much pain to get out of bed. There’s not enough good news stories out there about this constantly annoying disease.

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Recently in the news, there’s been some hope. Imagine Dragons singer Dan Reynolds recently came out about his battle with AS. Helgi Olafson is a Ironman triathlete. I’m not touring worldwide or being athletic for 6 hours straight, but I’m active. I have a full-time job. And I’m sure as hell not going to let this thing stop me. Yes, I’m more tired than I used to be and I hate this shot more than I hated drinking my milk as a kid (fun fact, I used to cry. About milk… I was such a peach). But I’m doing just fine.

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I’m going to get through all this. Anyone who’s suffering too, you’re going to get through this too. Yes, it sucks know there’s no cure and yes, you will need to make some life changes. Yes it’s annoying when people assume that because you look normal that you’re needy or dramatic or lying. But there’s a community and there’s an important place for you in this world that supersedes the stuff you’re going to hear at your rheumatologist’s. You will be fine. You’re good.

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P.S. All of these amazing pictures were taken by my favorite photographer Erika Eveleth. She does a little bit of everything, so if you’re looking for a photographer in the Atlanta area CHECK HER OUT! Her website is here.

Outfit Details
Flannel: J. Crew gifted two years ago (similar, similar)
Vest: Jones New York purchased two years ago for $30 (similar, similar)
Leggings: PINK purchased two years ago for $40 (similar, similar)
Boots: Zulily (Arctic Plunge) purchased recently for $35 (similar, similar)

Day 184: The Day Donald Trump Became President

The two party system does not work. Today we’re no longer restricted to define ourselves in a two-dimensional light; we’re not blue or red. We’re not black or white, we’re bi-racial and comprised of so many nationalities, the only way we can be described is American. We’re not gay or straight, we’re bisexual and questioning and queer and transsexual. We no longer fit into clearly defined boxes – our lines are fuzzy and represent a full spectrum of individuals. Right now a poll shows that 60% of Americans are scared or concerned (although, let’s face it, polls clearly are not an accurate indicator in our nation right now). For me, I’m most concerned about health care.

I don’t believe anyone should get a free ride for anything. I work my butt off and I’ve always expected to be wholly responsible for myself, my goals, and my representation in this world. What I didn’t account for was my diagnosis of ankylosing spondylitis. AS is a genetic disease, but I was the first in my family to show any symptoms. My pain started mid-way through my senior year of college. For two years I bounced from doctor to doctor as they tried to figure out how an healthy individual could go from running collegiate track and field to bed-ridden. I tried everything: chiropractors, yoga, more exercise, less exercise, acupuncture, hard-core pain medication, no medication, countless ER visits, physical therapy, x-rays, MRIs, different diets, no alcohol, and much more. In April of 2015, I finally received answers from my rheumatologists about my disease. For the rest of my life, I’ll struggle with flare-ups where it will be uncomfortable to walk. I’ll be at a higher risk for eye, skin, and bone density issues. My spine will start to fuse further, which will make my stance stooped, my bones more brittle, and give me some pretty intense pain.

At this point, my sacroiliac joints are fully fused. Right now I’m on Humira, which is a bi-weekly shot that stops my spine from fusing and minimizes my pain. I’ve been on it for almost six months now and it’s made a world of difference. I can run a 5k (although full marathons are out of my reach for now). Thank goodness for my company insurance or there’s no way I could afford these shots that have so greatly improved my standard of living.

If ObamaCare is repealed in its entirety, my insurance company will be able to drop me for being too expensive to insure. Since ankylosing spondylitis is a pre-existing condition, it’s unlikely I’ll be able to find another provider to take me on. I’m going to need a pretty sizable raise (I’m talking doubling my salary) to be able to afford the specialists, tests, and medication my condition demands.

I’m not a slacker. I’m not a wimp. Unfortunately, ankylosing spondylitis isn’t something I can just power through or ignore. I need support to make sure that the insurance companies are stifled in their quest to make money – they serve a purpose to our society that is greater than making money. With this president elect, that’s my biggest personal fear.

Aside from my own personal concern, I am worried for anyone who feels personally threatened by the comments made by our president-elect. To fully reap the benefits that so many Americans believe a non-career politician like Trump bring to the table, we need to stay vigilant in protecting common civil liberties. To my gay, Muslim, disabled, and black friends, as well as any one else who doesn’t fit in a two-dimensional box, I’m here for you!

Outfit Details
Top: LOFT gifted for my birthday (similar, similar)
Skirt: J. Crew Factory purchased three years ago for $60 (similar, similar)
Boots: Marshall’s purchased recently for $40 (similar, similar)
Necklace: LeTote (Anne Klein Hammered Disc Necklace) retails for $32 (exact, similar)