EDS and Law School Finals

It's that time of year again. No, not the holidays - finals season! I had my first final today; I have four more and a paper to write before I'm done for the semester. I'm scheduled to be down with everything at 3PM on December 16th, but it's going to be a crazy couple of weeks.

Originally, this post was going to be a short note to let everyone know that I'll probably be M.I.A. until my semester's over, but I had been thinking a lot lately about how I haven't really posted much about Ehlers-Danlos Syndrome and its effects on me yet. I'd really like to help educate people about EDS and the impact it can have on a person's life, because most people haven't even heard of it, nevermind understand how drastically it can affect someone's life. So, today, before I'm away for a couple of weeks, I'd like to talk a little bit about how my Ehlers-Danlos Syndrome affects me, specifically during finals.

Finals are pretty much hell for everyone. There's a lot of studying to be done, a lot of stressing out about things you didn't learn during the semester, and the fact that you have to attempt to prove to a professor in a few hours that you know everything he or she taught you during the course. It's not fun.

For me, finals have become a sort of special hell. There are no epic complications that occur because of my EDS, but there are enough little annoying things that happen that serve to make the experience all the more stressful because I have a connective tissue disorder.

So, what's the first problem? Testing rooms. At my law school, there are a number of classrooms that slope downwards; you enter the classroom in the back of the room, and you walk down stairs towards the front of the room. Of course, one of the complications of my Ehlers-Danlos Syndrome, presumably Type III/Hypermobility Type, is that all of my joints are extremely unstable, epecially in my lower extremities. My ankles are so unstable that I have to wear braces on both of them all the time, and even with the braces, I'm constantly in pain, can't walk significant distances, can't stand for any extended periods of time, or use stairs. Between my ankles, my knees, and my hips, which all sublux (i.e. move partially out-of-joint) regularly (re: almost every time I move them), I'm a huge fall risk, especially with stairs. No problem, right? I can sit in the back of the room. I can get to the testing room a bit earlier so that I don't have to ask anyone to move, no big deal. What about signing in and out of the testing room, like everyone's required to do? That's a bit of an issue, because the proctors always stand in the front of the room with the sign-in/sign-out papers, and it'd be really awkward to try and shout up and down the stairs to them that I'm disabled and can't use stairs. So, again, simple solution: I get to the classroom early, I ask to speak to a proctor as soon as one enters the room so I don't have to broadcast my health problems, and I explain the situation. No problem, they can bring the sheet up to me when it comes time for me to sign out. All I need to do is wait until everyone else has signed out, because when the test is over, everyone lines up in the front. Okay, great. I have to sit in the room until everyone else has left, watching as people stare at me and wonder why I don't just walk down the stairs, since I cover up my braces with pants and most people don't realize I'm handicapped. Even still, it's a small price to pay, right?

Other issues are created by the testing classrooms being located where they are. Most of my testing rooms are on the lower level of my law school, which is basically like a basement... with higher ceilings. As it happens, there are no restrooms on the lower level, which means if you need to use the restroom during an exam, you have to run upstairs. (Most students will literally run as quietly as possible - every minute of time on a law school exam is precious, and the longer you're gone, the less likely it is you're going to have time to finish the exam/write the answers to essay questions as adequately as you should.) As I mentioned, I can't use stairs. Instead, if I have to pee during an exam, I have to wait for the elevator - which can be slow as molasses, since it serves eight floors - to take me up a floor, and then I have to wait for it to take me back down. Once again, it's not the greatest scenario.

After I got home from my exam today, I was notified by e-mail of another issue: parking lot closings. I have a handicapped parking hang-tag, because as I mentioned, walking any sort of significant distance is a problem for me. I sometimes have issues walking 50 feet, so not having parking available close to the building can turn into a huge issue. (Believe it or not, the availability of handicapped parking close to the law school building was a huge factor in me deciding to transfer to the school I'm attending. The other school I was considering didn't have parking nearby, and because it also wasn't close enough to easily accessible public transport, I had to eliminate it as an option.) Now, in addition to studying my ass off, I have to find time tomorrow to call Public Safety and see what's up, because part of the lot I usually park in is supposed to be closed before my final on Friday. If the handicapped parking will be closed or minimized, I have to figure out where to park. The only other lot nearby is a faculty lot, which I could get a ticket for parking in even with my handicapped tag. I can't walk from anywhere further away, meaning that Public Safety is probably going to have to send a Public Safety vehicle or golf cart to pick me up from an alternative parking lot and shuttle me up and back from my car to my final. Considering though that this is Public Safety, I could be totally screwed if they're busy. Public Safety had to shuttle me to and from my classes when I was an undergraduate student when I fractured an ankle and couldn't crutch the mile and a half across campus in the snow, and because of all the stuff they have to do, it could sometimes take them twenty minutes to an hour to get to me. If Public Safety at this school has to shuttle me anywhere, I'm going to have to make sure to arrive extra, extra early in order to make sure I get to my exams on time, all because I can't freaking walk to the building from the parking lot in Guam.

My exams themselves pose further problems. Sitting in a chair and typing furiously for three hours with no break or a super short bathroom break is not nice when you have arthritis in an ankle, a knee, and an elbow, as well as degenerative disk disease in your spine. I constantly have low-level pain throughout my body due to the EDS, and adding the inability to really move for three hours definitely doesn't help matters. As a special bonus, my fingers sublux constantly as I type, and I get horrible muscle pain in my arms from trying to keep my movements controlled. Thankfully, it goes away after a few hours.

Now, don't get me wrong: things could be so much worse. All of these things are relatively minor inconveniences - at the end of the day, I can still take my exam and go home. But as much as these complications are small in the grand scheme of things, they are still complications. They still can and do present additional challenges that I have to overcome in order to accomplish the same seemingly simple task as every other law student - taking finals. It is frustrating, and it's the type of thing I don't just deal with during finals - EDS affects my everyday life in so many ways. Tasks that most people don't even think about can be a challenge for me, whether it's something as simple as brushing my hair (painful wrist subluxations mean constantly dropping the brush while hissing in pain) or getting a drink of water (my shoulder dislocates when I have to get the water jug down from the top shelf of the fridge). I'm so grateful that my problems aren't worse, but at the same time, I wish more people would take the time to understand that a non-obvious disability is still a disability, and it still has the power to impact someone's life in an extremely significant way. Just because you can't see it doesn't mean it doesn't exist.

Do you think people should be more aware of the existence and impact of non-obvious disabilities?

See you all in a couple of weeks!

It's Official: I'm a Zebra

Some of you may have noticed that I haven't been posting too much lately. Part of that is due to law school, which can swallow my life whole for periods of time, but part of it is also because I'd been busy preparing for my appointment with a geneticist. I had scheduled it nearly six months ago after searching for around three years for a doctor who was educated on the types of issues I was having, and yesterday, September 26th, 2012, was the big day.

At 7:30am yesterday morning, my boyfriend and I woke up, threw on clothes, grabbed my medical records, and boarded the train that would take us into New York City. We got off at Penn Station, grabbed a cab, and headed about forty blocks uptown to where I was seeing the doctor. We waited anxiously in the waiting room, I had some baseline measurements taken by a nurse, and then we were taken in to see the doctor. After almost two hours of extensively questioning about my medical history, my current health status, and my family and their health, plus a lengthy physical exam, the doctor told me what I'd suspected for at least a few years:

I have Ehlers-Danlos Syndrome.

 

It's weird for me to say. I have so many emotions about it right now, some which I think I was prepared for and some I wasn't. After years of suffering, I expected the news to come as a relief. I wanted to know; I wanted to finally be sure. I wanted an answer to the question I'd long been asking myself; I wanted to know what was wrong with me. And I got my answer.

 

In many ways, it is a relief. I'm an extremely honest person, but my symptoms, over the years, have led to people constantly questioning me, be they friends, family members, teachers, or others. Hardly anyone believed me when over and over again, I injured my joints, and over and over again, they failed to heal within any remotely normal time frame. I was cyber-bullied by classmates who thought I was faking it for attention, and I was given a hard time by teachers who didn't want to bother affording me the accommodations I needed. Doctors periodically wrote me off as overly emotional and dramatic, clearly just a hypochondriac.

 

I wasn't a hypochondriac. I didn't want attention. I wanted to heal. I wanted doctors to know what was wrong right away and be able to fix it. A lot of the time, I felt hopeless and extremely depressed. I wondered if everyone else was right, if I was just that crazy girl who thinks she's hurt all the time. I tried not to allow myself to get into that mind frame, and I constantly fought to find someone who would understand, to keep my head above the water until someone could figure out what the hell was going on with my body, why it was betraying me in the ways it had.

 

There's a saying, apparently commonly taught to medical students: "When you hear hoof beats, expect horses, not zebras." It's meant to serve as a reminder that there are common, simple causes for a lot of symptoms; that rarer diseases and conditions are rarer and generally shouldn't be given a lot of thought until all other "normal" causes are ruled out. In many ways, that's true, but at the same time, I wish more doctors would remember that "zebras" do exist. There have been so many signs that I was not the typical medical patient - that I had something distinctly abnormal going on - since before I was even born. Growing up, I had so many medical problems, but because they didn't result in death or extensive hospitalization, I was written off by most in the medical community. I've encountered a slew of doctors that have never even heard of Ehlers-Danlos Syndrome for every one that has believed me, and I have suffered immensely for it. If I could go back in time and educate my doctors about the condition, I probably could have avoided - or at least delayed - the exhaustion of my ankles. I could have limited my involvement in activities that were more likely to be detrimental to my health only because of the condition. There are so many could-have-beens that it's hard not to think about.

 

However, in the immortal words of J.K. Rowling, "It does not do to dwell on dreams and forget to live." This is my life. It isn't perfect, but in so many ways, it is still beautiful and amazing and all my own. It is, at the moment, enough.

 

I will be writing more about my experiences with and symptoms of Ehlers-Danlos Syndrome in the future, but at the moment, I'm taking some time to process my diagnosis. Additionally, I will at some point be undergoing further testing in order to determine which type of EDS I have. The Hypermobility type is most likely, but it's possible I have Classical or Vascular, though Vascular is definitely less likely. This will not turn into an EDS-exclusive blog, if you're worried, though having EDS will undoubtedly influence many of my posts.



Is it TDaP or DTaP?

Last Thursday, August 1st, I had an appointment with my doctor to get a school physical done. I normally don't get a physical every year (I see enough doctors during the year and have enough testing done that there rarely seems to be any point), but since I'm transferring, my new school obviously wants one done. No big deal.

It was only after I was in with the P.A. that I found out I needed a vaccine booster. I have no issues with needles, so I stuck out my arm and in went my booster TDaP/DTaP shot. Once again, no big deal.

Until, you know, about a minute later, when most of my arm went numb and the place where the needle went in started to itch. Neither the P.A. or the nurse seemed worried, so they finished filling out my paperwork and sent me on my way, telling me the arm would probably be sore tomorrow and not to worry about it. Of course, the next morning, I woke up with a hard lump on my arm right where I'd gotten the booster shot. Like any good millennial, I turned to Google. Google informed me that this was relatively normal; some people got a hard lump after getting the shot, and it was likely a minor reaction to one of the vaccine components that would go away in a few days.

Over the course of the next few days, the lump grew to the size of a golf ball. It was itchy and warm to the touch. Pain radiated up to my shoulder and down to my elbow. First, the lump wasn't discolored. Then it was red. Then it looked like I had a massive purple bruise. That's when I decided to call the doctor, who wanted to see me immediately. I drove myself to the doctor, and lo and behold, I was running a fever for the first time in 21 years! (I don't ever get fevers. Like, seriously. I've had sinus infections, ear infections, colds, bronchitis, the flu, and all those other things you're supposed to get a fever with, and I NEVER get one. The last time I ran a fever, I was 2 and had walking pneumonia.)

Yeah, apparently I'm allergic to one of the vaccine components...

On a brighter note, while my body is being difficult, I'm actually getting kind of excited for law school, which is beyond insane (and which I'll insist was never the case when finals week rolls around), but... I like justice. I'm actually trying my hand at the transfer writing competition, which for those of you unfamiliar with law, isn't really what you'd think: it's basically how you get on to law review/a law journal, something which employers generally like to see and which gives you the opportunity to potentially publish a piece of your legal writing. I'm not really sure I'll finish the competition, because I'm nervous about how my legal writing will come across when I haven't done any of it in a year, but either way, going through the sources has been a nice re-introduction to law school. I was petrified I'd have forgotten everything during the year off I had, but thankfully, that isn't the case.

Everything has also improved as far as my relationship goes, which is a relief. We still have our issues to work on (who doesn't?), but I think we've managed to find the common ground that we needed. We'll see how things go, but they're looking up from here.

Allergy Fun

Driving home from Robert Moses State Park



Ugh. Allergies suck. I've had them since I was a little girl, but lately, they've really been bringing me down. Apparently, going to the beach now causes me to break out in a rash (which is not sunburn) and hives. What?

Last Saturday, my boyfriend and I ventured out to the beach. We spent a nice hour and a half or so laying out on one of my old sheets, talking and enjoying the weather. It was hot out, but there was a nice breeze coming in from the water. On the ride home, I noticed that I was starting to get itchy. I thought maybe I had gotten a little burnt or that my skin was just dry, nothing that was out of the ordinary. Then after we got home, my boyfriend went to take a shower, and I realized that the back of my hand was covered in small hives. By the time he was done in the shower, I felt itchy everywhere, hives were also on my feet, and both of my thighs and my chest had broken out into a warm, red rash.

Looking up at the bridge going over the Great South Bay

  Fun, right? Unfortunately, this is the second time something like this has occured this summer. I broke out in rashes on my arms and legs a few weeks ago, also right after being at the beach. I don't know what's going on. It seems pretty clear that it's some sort of allergic reaction, but what am I allergic to? Is it the sun, the heat, the sand? Considering the hives and rash have been coming and going for the last couple of days, I'm baffled. I've been asking myself a million questions. Have I eaten something I don't normally eat? Have I changed any of the cleaning products I use? Is there anywhere I've gone that I could have come into contact with a substance I need to avoid? Are there any non-allergic conditions or diseases that match my symptoms?

Foot hives

It's crazy. Apparently, my mother and sister both sometimes get hives on their hands and feet after being out in the sun, so maybe we're just a family of vampires or something, I don't know. What I do know is that I'm already on allergy medication for about 75% of the year already; I take Zyrtec-D twice a day just to be able to function on a regular basis throughout the spring, fall, and parts of the early winter and early and late summer. I'm allergic to pollen of all kinds, mold, dust, grass, and about every tree that grows in my neighborhood. The past few years, I've all but baricaded myself indoors during the entirety of the spring and fall in order to avoid allergy and asthma attacks. Though I used to have my mother's olive-toned skin, I've become extremely pale, and my Vitamin D levels are startlingly low. I was on allergy shots when I was younger and they were recommended for me again a couple of years ago, but $90/week for only a possible 30% reduction in symptoms after two years? There was no way I was going to afford that as a college student, nor did it seem worth it.

I am so frustrated. Do any of you have really random/unidentified allergy triggers? How do you deal with them?