Tag Archives: ankylosing spondylitis

Day 325: Atlanta is Falling Apart

I’ve complained before: Atlanta is not good at traffic. Not only have they not quite managed the concept of merging, they also arbitrarily speed up and slow down. Bottom line, it is a nightmare to drive here. So imagine one of our busiest highways catching fire during the afternoon commute. All I can say is that I’m so incredibly glad that I worked from home today and that there were no injuries or fatalities when the i85 in Atlanta caught on fire and eventually collapsed today.  We watched the news coverage (which was our collective first exposure to local news) with a group of friends at game night. It was absolutely wild. Now we’ll just have to see how tomorrow’s commute is!

Since today was my work from day, I stayed in comfy clothes all day! I wore my Red Sox shirt, which was a good homage to the season almost starting again. I will say, the thing I miss most about the northeast is going to a Sox game!

Outfit Details
Top: Red Sox top purchased at Fenway (!!) two years ago for $50 (similar, similar)
Shorts: Nike shorts borrowed from LB (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 264: Training for a Half

Nothing like starting a Saturday off with some miles! I’m in the process of training for the Publix Half Marathon in mid-March. To make sure I stayed on track with training, I signed up for a training group that meets twice a week. I’ve run a few half marathons in the past, but they were all before my AS diagnosis and when I had plenty of time to train in college. Now that I have a full-time job, a dog, a wedding to plan, and this blog to take care of, I knew I needed this training group!

Today we ran 10 miles before it was even 10am. Since I felt like I accomplished a ton this morning, I spend the rest of the day doing nothing. Actually I cleaned a lot and hung out with L and PJ, but it was the perfect mellow day.

After I showered from my morning run, I was so pumped to put on comfy clothes and never put on anything else. This shirt is actually one of my favorites – I remember watching the Red Sox win the World Series with my Boston-obsessed roomie in our little house off-campus. It was an awesome series.

Sound off: so what are you training for this year?

Outfit Details
Top: MLB Shop purchased three years ago for $30 (similar, similar)
Yoga Pants: Gap purchased four years for $20 (similar, similar)
Slippers: UGG purchased eight years ago for $100 (similar, similar)

Day 256: Work From Home

I’m so grateful to be able to work from home the days I take my Humira shot (shout-out to the bandaid on my leg!). Usually I take my shots on Thursdays, but since I was traveling this week I got to take it on a Friday. Working from home on Fridays are THE BEST! Although I did spend my entire morning working in one spreadsheet trying to fix and analyze our expense trends, which was a little less than fun. Oh well, my boss was happy so I guess that’s all that matters (at least during working hours).  L had to work late on a project, so I caught up on all of my shows and ate a salad and half a bag of salt & vinegar chips. Balance, yall.

I bought this cardigan when I was doing a HIGH SCHOOL summer program at Boston University. It’s outlived most of my stuff – plus it’s super cozy and warm. I paired my cardigan with a shirt that I’ve had for 10+ years and these Uggs slippers that I bought in high school to be cool. Some days, the oldies but the goodies win!

Sound off: what’s the oldest thing in your closet?

Outfit Details
Cardigan: Urban Outfitters purchased eleven years ago for $40 (similar, similar)
Top: J. Crew Factory purchased ten years ago for $30 (similar, similar)
Shorts: Brooks purchased five years ago for $30 (similar, similar)
Slippers: UGG purchased eight years ago for $100 (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)