A Little Bit of My EDS Reality

One of the reasons I initially decided to start a blog was to be able to give my own perspective on my medical issues. I had suspected there was something odd about me medically for years before I was finally diagnosed in September with Ehlers-Danlos Syndrome, but in many ways, I didn't realize how abnormal some of my symptoms were. I didn't even realize they were symptoms! Since September, I've learned a lot about myself and the world around me, and in some ways, life makes much more sense than it ever did.

Most people I've come into contact with have never even heard of EDS. The people closest to me are just beginning to understand what it means for me and what is has meant for me. Most of the things written about it are so clinical; I think it's very difficult for a healthy person to understand what EDS can really mean. Symptoms and manifestations of the Syndrome vary from type to type and person to person, but in the hopes of enlightening people to the actual impact EDS can have on a person's life, here's a list of ways my EDS has impacted MY life.

1. Three and a half years ago, I lost most of the productive use of my feet. I somehow fractured my right talus (a bone in the ankle), the fracture didn't heal, and I had to have surgery 6 months later to remove scar tissue and the broken-off piece of bone. While I was healing, I couldn't put pressure on that ankle, and a week after surgery, the other ankle started feeling bad. To this day, it still does, and it's been constantly swollen since then. I wear braces on both of my ankles, and I can't run, jump, skip, walk any significant distance, stand for any real period of time, or use stairs unless I absolutely need to.
2. Even though EDS gives me "loose joints" and has forced me to live an extremely sedentary lifestyle, you'd never know it from my muscles. Especially in my legs, they are large, and they are super tight all the time, which means I constantly experience at least a low level of pain, fatigue, and/or soreness from which there's ZERO relief. Intense massage can help a bit, but it's not easy for people around me to do, because it's hard to get into the muscle. Imagine trying to knead a new basketball. That's what it's like trying to manipulate the muscles in my legs.
3. Most of the time, when I'm just going to school, I don't bother doing anything fancy to my hair. I used to straighten it almost every day (I have ridiculous Italian frizzy curls), but I stopped a few years ago - because it was painful. I never understood how other women got up and did their hair everyday, and then I realized that they were able to because they weren't in pain from it. I thought it was natural for my hands and wrists and arms to feel horrible after. I didn't realize that my finger joints, wrists, elbows, and shoulders were all constantly subluxing while I was working on my hair.
4. I am extremely clutzy, and not matter how careful I am, I always knock into things/knock things over. I smash my knees and/or elbows into doorjambs, walls, and tables/desks constantly, even when I conciously try not to. I will pour myself a glass of water, put it down, and not even thirty seconds later, manage to send it flying across the room even when I'm concentrating really hard on not accidentally knocking it over. My poor proprioception is because my joints don't have any idea where they are in space, so they can't accurately tell my brain where they are, allowing me to avoid such mishaps. This might also be why I'm terrible at parking straight.
5. Before I was born, my mother's doctor thought I was going to be born with spina bifida, because my AFP was abnormally high. After I was born, I developed jaundice, had severe milk allergies, and ended up at the doctor's office/ER multiple times for breathing treatments. I had chronic bronchitis, severe allergies which required shots, and by the time I was seven, my doctor noticed that I had absolutely no arch whatsoever on my feet, and I walked incorrectly. By the time I was ten, by orthopedist could pull my knee-cap halfway down my leg, and he told me I was "loose-jointed." I had chronic sinusitis and chronic ear infections, but I couldn't run a fever. I began to have chronic ankle issues - they were constantly rolling, I tripped all over the place all the time, and I went through all manner of braces and orthotics. I started getting injured constantly, and my healing times were over double what they should have been. I started having issues with milk again, and ended up doubled over in pain almost every night for no apparent reason, feeling like something was clawing and ripping at my insides. All of these symptoms were EDS-related, but not a single doctor ever mentioned the fact that there might be something bigger at work.
6. Every morning, I wake up with something new dislocated. Dislocations are supposed to be painful - and they are - but when you deal with them sometimes multiple times daily, you kind of get desensitized to it. As long as you can pop the joint back into place, you feel like everything's normal.
7. For someone who isn't blind or legally blind, I have pretty bad eyesight. My prescription is currently between -6.25 and -6.50. I literally cannot function without my glasses or contacts, and I need to be very careful, if I take my glasses off, to remember where I put them down. If I don't remember, I'm in trouble, because I pretty much need my glasses to find my glasses.
8. Stairs are bad. Very, very bad. It sounds crazy, but they're actually life-threatening. Since my joints are extremely unstable bodywide, I am a huge fall risk. If my ankles aren't rolling even with the braces and causing me to trip, my knees or my hips are likely dislocating, and when one part dislocates or subluxes while I'm in motion, another part inevitably follows. I can hold on to a railing or another person, but my wrists, elbows, and shoulders all sublux and dislocate, so that doesn't make things much better. Considering I have issues not tripping and falling flat on my face on flat, even surfaces, stairs terrify me. Years ago, when I used them regularly, I used to brace myself for a fall - I tripped up the stairs at least once a day every day I was in high school.
9. I don't ever feel well-rested. Ever. I can function after 7 and 1/2 hours of sleep, but on any less than that, I'm feel like garbage all day and can't keep myself awake. I set three alarms in succession the morning to mentally prepare myself to wake up, because I feel just as tired in the morning when I get up as I did at night when I went to bed. I also have my boyfriend call me every day to wake me up, because I sleep like the dead. Even if I've already gotten 8-12 hours of sleep, I sometimes won't wake up to my alarm clock and my phone blaring on full volume. I used to regularly oversleep the alarms by as much as three hours. I also seem to have a digestive intolerance/allergy for caffeine, so coffee, tea, or anything caffienated is out of the question unless I want to spend the next four hours in the bathroom.
10. I am extremely flexible. Creepily flexible. I had no idea that most other people couldn't touch their palms to the floor with their knees locked straight or that there was any part of someone's back they actually couldn't scratch until last year. I also only recently came to understand why women say they need someone to zip/unzip their dress.

So, welcome to my weird world. Do you know anyone with Ehlers-Danlos Syndrome?

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!

Unhappy Birthday to You

Last Saturday, I turned 24. It didn't feel much like a birthday, in part because for the first time I wasn't around any of my family members, and partially because what was supposed to be a lovely day out was ruined by the ignorance of others about invisible/hidden disabilities.

As I mentioned in my last post, I have Ehlers-Danlos Syndrome. It manifests itself in various ways throughout my body, but currently, my most severe symptoms have to do with my joints. Just about all of my moveable joints sublux and/or dislocate on a regular basis; I sublux almost constantly during the day, and I usually experience dislocations a few times a week. None of my joints are in great condition, but my ankles are significantly worse than my other joints. I wear braces on them daily, which I usually cover with pants.

The main reason I choose to cover my braces is to avoid drawing attention to myself. I'm the type of person who likes to try and fly under the radar; I HATE it when I get attention called to me. It makes me really uncomfortable. Most of that stems from growing up undiagnosed. As a child and a teenager, I was constantly injured. My injuries never healed in the normal amount of time, and that caused people to notice me - negatively. Doctors, teachers, classmates, and even friends and family members constantly questioned me. Doctors wrote me off as a hypochondriac when I insisted I still had a ton of pain and that physical therapy wasn't doing anything for me. Teachers gave me a hard time about affording me the accomodations I'd been approved for, giving me a hard time about things like getting me photocopies of the notes because I couldn't write. I found out later they discussed me openly in the staff room, insisting I was just, "Being a pain in the ass." Classmates made no secret about their disbelief - even though I wasn't allowed to carry things, almost no one was willing to volunteer to carry my bag to my next class. A couple people went as far, in the early days of AIM, as making a fake username and harassing me, telling me I wanted attention, that I was a faker and a liar, that no one would ever love me, that no one liked me, that I was good for nothing. My friends had a hard time believing me, as did my family. They never knew me to be a liar, but the sort of things happening to me were things they believed didn't happen to people - or only happened to people with a known genetic condition.

In some ways, other people treating me the way they did was more disabling than any of my injuries. I learned to hide myself away, hide the pain, hide the suffering. It was very unhealthy, but that's how I coped.

For my birthday, my boyfriend wanted to do something he thought would make me really happy, and he searched for months to find us tickets for a Broadway show I wanted to see. I was so excited, and on the day of my birthday, we headed into NYC set on having a lovely day. We got up to the theater, got our seats (second row!), and everything was going wonderfully... until I was harassed three different times, by three different ushers, because my disability is hidden. I was on line for the handicapped restroom, since the other bathrooms are up or down several stairs, and with my ankles, I can't do stairs. I got stared at. I got glared at. I got told this restroom was not for my use. I was told the bathrooms for my use were upstairs or downstairs. I was treated with disbelief. I was targeted, because I look young and vital, and I choose to cover my braces so that people don't stare at me everywhere I go.

After the third usher approached me, she tried to explain that the policy of questioning people on line like me was to preserve my use of the restroom, that the policy was in place for my own good. I responded, through tears, that when a policy unfairly targets and harasses the people it's trying to protect, it's obviously not working, and it harms people that are already dealing with enough. No one has the right to judge me - or anyone - based on my outward appearance.

Many, many disabilities are hidden or invisible. People who are disabled don't like being stared at, and those of us who can mask our disabilities often choose to, because we'd rather be seen as people before we're seen as disabled people. This is something that people need to realize. People with hidden or invisible disabilities are already suffering enough, the last thing we need is someone harassing us "for our own good." What we need is people that are compassionate and understanding, who are educated enough to know that just because a person isn't in a wheelchair doesn't mean they're not disabled. Disabilities, like people, come in all shapes and sizes, and appearances can be deceiving.

My experiences - and ruined birthday - could have easily been prevented, had the staff members not been so quick to judge, so uneducated about disabilities, and so arrogant. I told as much to the house manager, who encouraged me to write to the organization that owns the theater, offered me free tickets to come back, and said she'd speak to the staff. It was a nice offer, to be sure, but in order to take it, because I am disabled, there are so many complications:

1. I'd have to take a train into the city again. Trains cost money, to the tune of $50 for two round-trip tickets. Aside from the fact I'm a law student with no money, trains are difficult for me to travel on because of my joints. The jostling causes they to sublux and/or dislocate the whole ride there, and the whole ride back.
2. I'd have to come up with the money to take cabs up and back to the theater again. Like I said, I'm a broke law student. Subways and walking, which are great options for most people, aren't an option for me.
3. I'd have to find the time to actually GO to another show. I'm in class Monday through Thursday, from the morning through the evening every day but Thursday. If there are even shows on Thursdays, I'd have to try to take a train in during rush hour, which usually means there's zero seating left by the time I'd board. I can't stand for an hour train ride, because of my disability. On Friday, I work the entire day. On Saturdays, I usually have some time, provided I'm not cleaning, doing laundry, or running errands, i.e. doing all the things I don't have time for during the week. On Sundays, I spend the entire day doing homework to get ready for my next marathon week.

You would think, at a show that prominently features a disabled character with a not-so-obvious physical disability, that the staff would be more sensitive to the fact that people have hidden and invisible disabilities. The irony was not lost on me.

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.