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?

Snowpocalypse Janus

Right now, I'm comfortably settled in the law library, and there are approximately 14 inches of snow on the ground. Snowpocalypse Janus hit Long Island and NYC yesterday, causing massive chaos and panic throughout the region. Attempting to make the drive home yesterday was one of the most physically, mentally, and emotionally exhausting experiences I've ever had in my life, so much so that I think I might still be running primarily on adrenaline now.

In the morning, everything was fine - until the snow started 3 hours earlier than predicted. By noon, the media and public officials were telling everyone to get home ASAP, because the worst of the storm would be upon us soon, and travel would be extremely hazardous. Of course, the NYC and Long Island region is hugely populated, and millions of people commute back and forth to work every day. In fact, so many people commute back and forth that rush hour in the region, occuring in both the morning and in the evening, can be up to four hours long each rush, because of severe overcrowding of the roadways and public transport. So yesterday, all at once, you had not groups of commuters on the road (people who generally leave their workplaces at different times during the normal rush hours), but ALL commuters on the road. Literally everyone in the area decided they'd better head home at the same time. Most of the main roads were sanded and/or salted in the morning, but snow was coming down at the rate of over an inch an hour. Temperatures were well below freezing, and the roads filled so quickly and cars had to move so slowly that it actually felt like the apocalypse was occuring. My boyfriend's home, which is normally a relatively quick 10-20 minute drive from my school, took me over 90 minutes to reach. Traffic on the parkway going towards his house moved at an average rate of about 7 miles an hour. Cars were sliding out and getting stuck all over the place, and I passed accident after accident on the way.

After stopping at my boyfriend's house to check the traffic reports and the weather, I figured out an alternate route home. I got back in my car, and it was honestly like the world was ending. Two hours later, I'd only made it about two miles from his house, and I hadn't even managed to average a mile an hour the entire way. I stopped at the Container Store just to get myself out of the car and calm down; the radio had announced that two of the nearby parkways were closed due to accidents, and the weather was steadily getting worse. My parents, both frantic, kept trying to get in touch with me. My father suggested staying in a hotel, but everything I'd really need for an overnight stay was at home: my phone charger, my medications, etc. My father's girlfriend's house was about another two miles away, and we decided that I'd try to get there, and either my father would try to come get me later or bring me some stuff, if the roads weren't going to be passable for my small car. It took me almost two hours to get to my father's girlfriends house, but thankfully, I made it there safely.

Normally, I spend a maximum of two hours driving in the car per day. By the time I arrived at my father's girlfriend's house, I'd spent a total of five hours driving my car through snow, ice, and stand-still traffic. I was so glad to be someplace warm where I could rest and try to relax.

For the next few hours, I monitored traffic cameras, traffic maps, and attempted to figure out what to do. At around 9 o'clock, the roads were finally clear enough that I was able to go home, driving less than 35 mph the whole way. I don't think I'd ever been happier in my entire life to be home. There were many times in the car yesterday that I wondered if I would even get home; I worried that I'd run out of gas, spin out, get in an accident, have the car break down, break down myself, not be able to physically endure the demands of driving due to my EDS - it was terrifying.

I am so grateful that I made it home in one piece. I am not grateful for the mass hysteria induced by the media and public figures, or for the utter failure of anyone to predict how bad the storm would get so early. Realistically, by the time anyone revised the time that the storm would be the worst, we were all screwed, because it was a race against the clock to get home before then - and no one could. We were all out in the worst parts of the storm, simply because someone got the weather report wrong... and then scared us all into heading out exactly when we should have been sheltering in place.

I think I need a nap.

Old and New

Sometimes, the law library feels like my second home. I spend so much time in here reading (and relaxing, when I have the time); it was almost strange to be elsewhere during break. Yes, my law school classes have started up again... too early! I could have used another week or two of break.

But now I'm back to the daily grind, which honestly isn't so bad. I'm one of those people who's only happy when I know I'm doing something with my life; little breaks and vacations are great, but too much time spent lazing around always ends up making me depressed. I tend to feel like I'm stagnating if I'm not working towards some sort of goal, which is why 2013 was a difficult year for me but also felt like a turning point in my life.

I started off 2013 with the flu and the one-year anniversary of my car accident, where I was hit from behind while stopped. I was depressed that I wasn't in school or employed, and I was really nervous about finishing my transfer applications and pretty down on myself in general. Losing my scholarship in law school, though the circumstances were extreme (shingles during fall finals, allergic reaction and cellulitis before spring finals, a debilitating care accident at the beginning of the spring semester which left me in PT 3x per week and unable to drive for a month, with horrendous, I-need-to-lay-down-NOW headaches, my mother's cancer scare and surgery in February, and there being a power surge that shut down my computer during my Transnational Law final and a proctor with no idea what to do) and my grades weren't bad (loads of B+s, a few Bs, and a B- in Transnational Law), made me question everything. Before starting law school, I was so sure it was exactly where I was supposed to be, and everything devastated me so much that I spent a lot of time wondering if maybe everything that happened was just a sign that I wasn't supposed to be in law school. My boyfriend, who hadn't had a car for over a year and was struggling with unemployment due to the job market and his bachelor's degree in sociology, managed to find a temp position, save enough money to afford to lease a new Nissan at a manageable price, and finally, finally get back into school, something he'd been intending to do since we met. To my surprise, I was accepted into a higher ranked law school than my former law school, AND the higher ranked school, which actually cost slightly less than my former law school, offered me significant scholarship money. (I'll still have boatloads of student loan debt when I graduate, but every bit of help helps!) I was nervous about attending, still in the midst of my quarter-life crisis, but everything ended up working out really well. I honestly believe that everything I went through with my former law school was so that I'd end up here. I hated my first year in law school, but the environment here is so different, so much more open and welcoming. I've made a few friends, gotten involved in a student organization, met some great professors, and I'm about 25,000x happier than I was at my former law school. I didn't apply to this school right out of college for several reasons, all of which I've thankfully found out were baseless worries. I was diagnosed with Ehlers-Danlos Syndrome in the last months of 2013, which evoked a lot of mixed emotions that weren't always easy to deal with, but at least now I can begin getting the kind of care I need to preserve my not-already-shot joints and my the rest of my health. I found a wonderful online support group for the condition, and I've begun educating friends and family members about EDS, which has helped me a lot.

2013 was also a big year for me in terms of my genealogy research. I found and connected with numerous modern-day descendants of my ancestors on both sides of my family, getting in touch with everyone from third cousins living locally and fifth half-cousins once removed living an ocean away in Denmark. I got all the paperwork together to finally order my great-grandfather's death certificate to find out the names of his parents and be able to start tracing the family back in Italy, and I found out some crazy information about my mother's father's mother's side of the family.

All in all, 2013 was a really big year for me. It had its struggles, but without them, I wouldn't be moving forward. I'm glad to be. 2014 has been fine thus far; my professors don't seem terrible, nor do my classes. My schedule isn't the most convenient thing in the world, but it's not bad either - it should allow me to get a lot of work done at school, which will be nice, since it means I'll have less to do on the weekends. I also did order my great-grandfather's death certificate, and to my surprise, the office was able to give it to me right away - I didn't have to wait the 4 to 6 weeks I thought I would have to for them to send it to me. I've already found another family member on my father's side that's more closely related to us than I thought I'd be able to find, and the grades I've received thus far - and the grades my boyfriend has received in the classes he took this past semester - have been pretty good. I finally got an A in law school (and in a subject in the field I want to work in), which was pretty awesome.

A very happy new year to all of you out there!

How did 2013 go for you? Did you hit any turning points in your life this year?