Hooray! I have a disease! (Probably)

No, really, this is a good thing. I'm not being sarcastic or just trying to smile in the face of something scary. I am ecstatic about this news. This possible news. I guess I shouldn't be too excited because nothing is official yet, but the thing is that I'm one step closer to being sure about something and there are actual steps that I can take now. Hopefully. 

Twelve years a frustratingly long time to have a problem without finding any real cause or solution. 

As many of you know, I've had recurring migraines for over a decade now. For a while, we always thought that these were caused by my spina bifida (I have an extra vertebrae in my spine and it's caused quite a few weird issues, if I'm being honest), and I have tried so many things, friends. I've been to acupuncturists, chiropractors, good ol' fashioned general practitioners and one by one they've all shrugged and said various forms of "That sucks," or "it's probably linked to your cycle."

Me: But... the migraines don't consistently happen during my period."

Doctor: Yeah, but they usually do?

Me: I mean... this past one was on the last day of my period, but -

Doctor: Yup! The uterus, man. It can be a real B. 

Or this other conversation I had during which the doctor told me that she couldn't really do anything to help me unless I was having migraines for 15 days out every month, so she suggested that I just start taking ibuprofen every six hours three days before each migraine hits... which could be at any time. 

I shouldn't mislead you. They've all tried to help in some way shape or form, but the reality is that none of them have been able to figure out how to keep these migraines from coming back. 

And I will say that my current chiropractor has actually been amazing so far. He's taken the time to understand the skeletal structure of my screwed up body and how it moves. He's listened to me when I explain that it's not just hip or back pain, and then random isolated migraines. 

You see, the thing is that these migraines aren't just really bad headaches. By the time the headache actually hits, the pain will be almost rippling out from my right hip until the pressure builds up in my head, behind my right eye. My right sinuses will get clogged, my right ear will feel plugged, even the right side of my jaw gets sore and tender. Then that pain will continue down the right side of my neck, into my right shoulder, down the right side of my back, through my right hip, into my right hamstring, all the way down into my right foot. 

I have full-body mother-effing migraines, y'all, and it sucks. 

So when this chiropractor sat down and actually heard me describe all of this, for the first time in twelve years, I heard someone say something other than a dismissive comment:

"I'd like to send you in for some tests." 

Cut to a week later, I sat in a lab while they drew seven vials of blood from my body and sent them away to get analyzed. I was tested for various things, including two different types of Lyme and Rheumatoid Arthritis, which is what seemed to be the most likely diagnosis. Weirdly, however, when I got the results, it wasn't either of those things. 

The results said I was all good for almost everything except for two odd results: I'm severely lacking in Vitamin D (but I'm also a pale redhead who loves the rain, so... this felt a little obvious), and that my blood work came back positive for the gene HLA-B27. 

After some quick googling, I found out that this gene is linked to all sorts of autoimmune diseases, including Ankylosing Spondylitis

Not only does it sound fancy, but it's also LIKE WORD FOR WORD WHAT I HAVE. Seriously, friends, when I was reading the article about this disease it felt like I was reading my body's memoir. In a nutshell, AS is essentially arthritis that attacks the spine and large joints. Like hips. Or shoulders. People with AS will experience flare-ups that cause a lot of pain throughout the body and then go into short periods of remission in between flare-ups. 

There is a huge amount of potential relief that I'm feeling right now. I still need to go see a rheumatologist (I have an appointment on October 15th) to know for sure, and while this might not be my diagnosis, I feel so much closer to having an answer, and it's because someone finally took me seriously. Someone finally listened

Twelve years is a really long time to be in pain without ever having any idea why or how to fix it. 

And I've never been happier to potentially have a lifelong disease. 

Oh, and if any of you know anyone who has experienced these symptoms or who has AS or has anything to offer, I am all ears. Tell me everything!! 

 

Mind Over Bladder.

Customers often come into the bookshop asking to order a book they just heard about on NPR or on TV, and because our job is to sell stories, we often end up in long conversations with these customers about the things we've read or learned. 

And sometimes I walk away from these conversations unable to stop thinking about them.

Or really having to pee. 

Yesterday a woman came in after having heard about a study that a group from a prestigious university about the differences between European brains and American brains and apparently they found that European brains are way healthier and way less likely to develop alzheimers or dementia. 

I feel like at this point I should tell you two things:

  1. I was not actually a participant in this conversation. I just eavesdropped on it from my desk about 25 feet away. 
  2. I did absolutely ZERO research to find out if what this woman was saying was correct, but she was mega confident, friends, so... I went with it. 

Okay, so now that that's been covered, here's the rest of the story...

The other customer that my co-worker was chatting with asked if this study mentioned what they thought the cause was.

Study Lady: Well, yeah, diet. Mainly their water intake. 

Lady 2 + Co-worker: Mmmm yessss of course.

Study Lady: They actually drink the amount of water that we're supposed to be drinking and most Americans barely drink any water in comparison. When you think about it, you don't just need to hydrate your body, but you need to hydrate your brain, too... and most people don't realize that caffeine actually dehydrates you, so tea or coffee doesn't count.

Lady 2 + Co-worker: Well, of course. 

Me: 

Y'all. I drink almost exclusively COFFEE. 

And before you freak out, I'm not an idiot. I knew before this moment that wasn't the best health choice in the world, but I was always defending it because it helped me be me. It kept my energy up and made me all sunshiny and happy. In other words, IT WAS GOOD FOR MY BRAIN. 

And if there's one thing that terrifies me, it's losing control of my mind. 

So, without hesitating, I went into the back room, grabbed the water bottle that I bring with me to work to pretend I'm a healthy person, but never actually used, and STARTED CHUGGING. 

And I continued to drink water (in addition to coffee - I'm not a monster) all day. 

Which means that I had to pee. 


ALL.

DAY.

At this point, my memory will be amazing, but it will ONLY CONSIST OF BATHROOMS. 

But still, I'm determined to better myself based on this anecdotal evidence that water will keep me from scrambling my brain. 

I'm not giving up coffee - as I said, I'm not a monster - but I am going to legitimately try and consume at least 64oz of water a day. 

And who knows? Maybe this means I'll have a strong mind... and an even stronger bladder? 

Plus, this could turn into a whole travel blog series: Bathrooms Critiques by Emelie. After all, I'll be spending most of my time in them now. 

What about you? Do you feel like you drink enough water? Do you make major life changes based on information you overheard someone who probably has no qualifications or scientific background say? 

Tell me in the comments below, because I really have to pee, so I need to stop writing this blog post! 

Thanks a lot, weird genetics.

I'm twenty-five, but if you were to just look at the state of my  hips and back, you'd think I was decades older. I have a lot of strange issues with my skeleton, most of which are caused by the fact that I have a very acute form of spina bifida. Don't worry, it's so mild that it isn't life-threatening or anything, but it does come with its own issues. Essentially, I have an extra vertebrae in my spine, and my tailbone never really... happened. I guess when I was still in my mom's womb, my tailbone was all "NO! I'M NOT READY! I WANT TO BE MORE LIKE THE REST OF THE SPINE!" and then the rest of my spine was like "Dude, if you don't do what you're supposed to do, this girl is going to be born with a tail. IS THAT WHAT WE WANT, REGGIE?" The end result? A sort of half-formed tail bone... thing. It's not noticeable in any way, unless you're looking at my x-rays, but it's a thing that sometimes causes problems.

For example, I woke up the other day and my hip felt like someone just popped it out of the socket and now it's refusing to go back in. And, because I know that whole song about all the bones being connected, there is shooting pain and discomfort up and down the whole left side of my body... which results in people staring at me when I think I'm alone as I try and bend my body into all sorts of weird positions to hopefully put my hip back in its rightful place. And this is a small town. People talk. So now I'm that girl.

And my hip decided to do this at a really not awesome time, you guys. As many of you know, I work in a bookshop, and yesterday was Independent Bookstore Day. Indie bookshops across the country, including this one, were celebrating with tons of festivities. I planned many of our festivities, and one of those festivities was a Rad American Women Dance Party. This was because one of the exclusive merchandise items was a 7-inch LP inspired by the book, Rad American Women A-Z, which is an awesome book, and I suggest you rush to your local indie bookshop and buy it right now.

So yeah. I was doing my best on this very busy shopping day to not show how much pain I was in, all the while knowing that the grand finale would be a dance party, and that I was to be pioneering this dance party, so I was really going to have to shake it.

Oh, and did I mention that I had no pain meds with me?

Let's just soak this all in.

  1. Spina bifida.
  2. Rebellious hip bone.
  3. Terrible back pain.
  4. No meds.
  5. LET'S BOOGY.

I was about to panic for a moment, so I went into the back room to take a deep breath and to try and stretch my back and then I took to twitter:

And all I really got in response was some nonsense about wildebeests that I'm still trying to make sense of... so twitter kind of failed me on that one. I think. I'm still not sure.

And then the time came, and - I kid you not, folks - no one showed up for this dance party. There were a few stragglers in the store, yes, but they were all very disturbed when I told them what was about to happen.

But you know what? I blasted Cyndi Lauper's Girls Just Wanna Have Fun and danced anyway. Because life is short.

Plus I was also hoping that if I danced, maybe I would move a certain way to pop my hip back into place.

Awkwardly Awesome People to Be Aware of #2: Kelsey

So remember back in December when I was all "check out these guys who are saving the world by climbing mountains!" Well, now I've got another person to introduce you to: Meet Kelsey:

kelsey

Kelsey and I met while we were both studying abroad for a year in England.  I was on my way home from the pub at like... 2 in the afternoon and she had just gotten to our flat where we would be roommates. Due to the fact that I was a little buzzed and trying to cover that up, she thought I was a stoner. I thought she was a ditzy party girl.

What I'm trying to say is that first impressions are often wrong. I'm not a stoner (I just like day drinking) and Kelsey, it turns out, it's the most badass person I know.

Why?

Well, folks, not only is she not ditzy  (in fact, she's super smart), but she's also decided to just like... save the world or whatever. We got back from the UK, graduated college, and while the rest of us were looking for jobs or getting engaged, Kelsey was all "I'm gonna go to Madagascar for a few years with the Peace Corps. and live in a hut while I teach little kids and mothers about water sanitation and what not! You guys have fun with your stuff!"

Right??? She's awesome. She's not even Awkwardly Awesome. She's just plain awesome.

In fact, she's so amazing that she's taken on this crazy huge project of getting decent latrines built in her village so that the residents have somewhere sanitary to go to the bathroom. Currently, the people in her village are without latrines because the river that they bathe and drink from has washed away the ones they had before. So.. Kelsey is building stronger ones. Because she's awesome. (How many times have I said that?)

Here's the even cooler thing, though! YOU get to be amazing, too! Kelsey, as you can imagine, can't really do all of this completely on her own. She needs help, and that's where those of us who are super lazy and sit on our couches all day get to take some action. I know that the Doctor Who coffee mug you're looking at on thinkgeek.com is SO COOL, but if it's between getting that this week or helping someone not poop in the river that they bathe and drink from, I'm begging you to go with the latter. I mean, I want the mug, too, but it'll be there next week.

If I've convinced you or if you want to read more about this from Kelsey herself, click here.

Have a wonderful day, Duckies!

Warning: There is Poo Mentioned in This Post.

Okay, so this post might get a little weird for some people, but personally, I was laughing too hard while having this conversation to not consider posting it - and then I relayed the story to Fiona and she was laughing too hard for me not to decide to post this. So this is a conversation I had the other night with my dear friend Gumby:

Gumby: I just ate almost two pounds of fruit.

Me: Ooooo yummy, but I bet you'll have to poop later.

Gumby: Sure will...just like with all food.

Me: Yeah, but fruit makes you poop more! Just like with coffee!

Gumby: Making me wonder, what would it look like if you ate nothing but corn for like a week or so? Whole kernel corn.

Me: ...that's terrifying...

Gumby: I bet we could market that as a "colon cleansing diet".

Me: Totally. LET'S MAKE SOME MONEY.

Gumby: The problem would be ensuring that the person didn't die from nutrient deficiencies, but its only a week...

Me: Yeah, and then people would try and take it to court when they get sick but we'd be all "WE SAID ONLY A WEEK, BITCHES!"

Gumby: We couldn't tell anyone what the diet was otherwise they would just go to the store and buy it for themselves. I'm picturing this being a diet in a can that is only marked with like "day 5 breakfast" and everytime they open it, they get sad and yell "Corn AGAIN??!?"

Me: Oh that'd be perfect!! We could so get away with this! It's an infallible plan.

Gumby: We could simultaneously run a study to see how long people take to question authority.

Me: Blending scamming with science! I love it! This legitimizes the whole thing.

So... Gumby and I might be too comfortable with one another... and if you see some weird Corn Diet scheme popping up... don't say anything... I'm kind of poor and I could totally use the money. Plus, John Hamm is going to be a lawyer - so she can keep us from getting sued. Pro bono because she loves me.