My Light Rail Dilemma

Every morning I have to take the Light Rail from Penn Station to get to school, and every morning I need to buy tickets for it. But first I need to stop and get myself coffee so that I can stay awake for class. So I go to Dunkin Donuts, grab breakfast and coffee, then proceed down the steps to purchase my tickets.

I buy two tickets at a time so that I have another one ready for the return trip. I use money that I take out each morning from my coin jar. I take that $1.40 in coins and stick them in the front right pocket of my jeans. Anyone who knows me knows that I hate digging around in my bag for my wallet, so I keep that money ready for a quick transaction.

I get to the machine, coffee in hand, and start tapping on the touch screen. Easy enough. But here's the hard part: I now need to get that $1.40 in coins out of my pocket and into the machine. You're probably wondering why I'm making a big deal out of something so simple, right?

Here's how this tends to go. I can easily pull the money out of my pocket. Now I have $1.40 in coins sitting in the palm of my hand. However, I don't have the dexterity to move the coins in such a way that I can accurately get them into the coin slot. So now I need to decide whether or not I want to take the risk of dropping all of the coins on the floor by trying to do this one-handed and fling the coins into the slot, or if I want to try to balance my coffee in between my arm and body to try and make use of both hands. You might be thinking, "Hey stupid, just put the coffee on the floor." I agree that sounds logical, but you're talking to someone that has a vendetta against all germ-y things. And let's face it, train stations and the like are germ-y places.

On especially stiff mornings, I don't attempt the one-handed technique. Instead I will use my right hand to grab the coins, place them in the palm of my left hand, and pick each coin up one by one.

And don't even get me started about what I have to do when dollar bills are involved in this process.

I envy all of you out there who don't need to put any thought into this. The movement just  feels too awkward for me. I'm thinking that maybe I need to start buying enough tickets on Monday to last for the entire week, but then I also have to worry about not losing them. Maybe I need some hand yoga. That exists, right?

Yoga No-Go

Yoga is supposedly good for RA sufferers. That's what all of the RA forums, and my weekly WebMD newsletter, told me anyway. "Do yoga, stretch out those joints!" they said, albeit more eloquently. Supposedly I'd feel more relaxed, which would cut down the pain and make me more flexible.

As someone who favors holistic healing over conventional medicine, I try to look for more natural modes of healing myself, though that doesn't mean that I'd ever just stop taking my medication. I had done yoga as a preteen, and I remember enjoying it. I've continued the meditation aspect ever since, but not the "workout" portion. Anyway, the one yoga instructional video that I did own was on VHS. Yeah, that didn't help the cause. Hey, at least I owned a yoga mat.

I did what I thought would be a quick search on amazon. As of the writing of this post, there were 8,055 hits for "Yoga DVD."  This was proving difficult. Still, knowing that I am too poor to afford classes, I persevered. My mother knew I was on a yoga quest too, and the other day she came home from Walmart with a yoga block and DVD in hand. Yes! This could work.

And so I popped the DVD into my computer. I sat down on the mat and waited for relaxation and feel-good stretching to start. There was no feel-good stretching.

Instead, I found myself struggling over the most simple positions. I realized that sitting with my legs crossed is an almost impossible task. My knees definitely did not want to bend that way. Switching from a seated position to a standing one, then back down to a kneeling one? Ha. I can only imagine what I would have looked like to a spectator. I'm so glad I picked a time when the house was empty to try this. I found myself constantly pausing the video just so I had enough time to pull myself up into a new pose. I was more out of breath from getting into poses than holding the pose! On the bright side, I guess I got a workout regardless of my flexibility fail. By the end of the 20 minute DVD, that yoga block was being used as a chair.

I think it's going to take awhile before yoga actually becomes relaxing, or before I receive any sort of health benefit from it. I found myself too worried about getting into decent poses without breaking something to actually reap any benefits. I also made the scary realization that my body doesn't move like it used to. The last thing I want to lose is my mobility, which probably means accepting the fact that my joints creak with every Downward Dog and just trudging along regardless.

I could also put pride aside and buy a "Yoga for Arthritis" DVD and roll with the old ladies. On second thought...nah. It probably wouldn't be as hilarious.

On a Positive Note...

There's no denying that having RA is downright awful sometimes. There can be low moments for sure. Instead of focusing on the negative though, I want this post to be about some of the positive things that have come from being diagnosed with an autoimmune disease. So here they are:


1. I can't donate blood. You might ask how this could be viewed as something positive. You might feel like lecturing me on the importance of charity, or give me some statistics on how many people rely on donated blood. Don't get me wrong here. I admire and appreciate all people who have no problem with donating, mainly because I'm petrified of needles. The idea of being stabbed and subsequently having a large bag of blood removed from my person is enough to make me hyperventilate. This is where having RA becomes positive. People with autoimmune diseases aren't allowed to give blood (mostly because of medications and unknown disease factors). So when I'm asked if I would be willing to donate I don't have to make up excuses to hide my needle phobia from the general. I have an honest reason not to. However, karma still gets me: I need to have blood tests done every three months. I can't win. But at least I only have to face my rheumatologist's lab tech. And, maybe some blog readers...


2. I can predict the weather. This is not a myth. Nor is it a type of magic. If I wake up one morning and my right shoulder is stiff and creaky, I know it's going to rain that day. This is helpful on days when I run out of the house without checking the weather. At least I'll know to grab an umbrella. Rain and RA don't make for a pleasant combination, but at least I can impress small children with my "magic powers."


3. I have an excuse to take time for myself. I've always been that person who never said "no." I went through high school and most of college thinking that I was Superwoman. I took on multiple jobs, volunteer work, full time school, and a social life. RA has definitely slowed me down, but that's a good thing. Sometimes we get so wrapped up in whatever we're doing that we forget to slow down and enjoy life or take breaks. I used to just say, "Oh yeah, I'm tired, but all people who work hard are." My diagnosis changed that mode of thinking. Now I realize that it's okay (and important) for me to say no, because at the end of the day, if I'm not healthy and happy, I'm useless to everyone else.

Exam Panic

Exams are a necessary evil for students. We all need to take them, and we know to expect them. How we handle them varies from person to person. Some will choose not to study and won't sweat the material. Others will study vigorously until they feel confident in the material. Then there's a select few that fall into the "let's panic about everything" category. I include myself in the panic category, but for different reasons than most people think. For me it has become so much more than just studying and passing a test.

The panic starts the second an exam is announced, with my inner monologue sounding something like this:

Is it going to be multiple choice? I hope it is. Please tell me it is. Oh God, what if we have to write an essay? Shit, what if the entire exam is an essay? Or multiple essays? Oh no, the Blue Books! She said Blue Books! I'm screwed. What if the weather is bad that day and I wind up flaring? Maybe I'll get lucky and it'll snow ten feet and Rutgers will deem it necessary to close the campus...

Since being diagnosed, exams have become more of an endurance test for me than anything else. First, there's the studying part. Chronic pain lessens my ability to focus. I once forgot how to spell my name during an exam, which was a pretty low moment for me. Even while studying, there are moments when my mind wanders to the sharp pain in my wrist, or my stiff neck, or the fact that I can't breathe because my immune system decided to attack my lungs right at that moment.

Then there's the night before the test, and try as I might to be asleep by 11pm, my immune system says, "Nope, time to toss and turn and be uncomfortable until 2 am." So then I start cursing at it, and shift around so much that the dog gets annoyed with me and goes in search of a more peaceful bed.

On the day of the test I'm cranky and exhausted. But the bigger problem is the fact that it's raining outside and my fingers keep locking up as a result. I can't give you a scientific reason as to why this happens (people tell me it's about barometric pressure) but rain heightens the pain. So now I need to start praying that my special pen designed for clumsy arthritic hands won't run out of ink because I'd never be able to write with a regular pen on a rainy day. Some days I get lucky and I can use a regular pen, but only for a short while. 

And finally, I get to the test. It's a test that requires three hours of constant writing. So I'm hunched over the paper, kink in my neck, hips locking up because I don't have the opportunity to get up and move around. More wandering thoughts.

I do feel sorry for myself sometimes. It happens to all of us. Then I realize that it could be a lot worse, that I should suck it up and be grateful that I'm in school in the first place. Besides, it's a much more rewarding feeling when that exam comes back with a good grade, because I know how much blood, sweat and tears literally went into it.

Battling the Invisible

I want you to think back to your commute this morning. Perhaps you drove.  Let's pretend that you took the train though. Maybe this train was really crowded. You were lucky enough to get a seat, but quite a few people needed to stand. You look across from you. There's a young guy standing there, let's say in his mid twenties. He looks strong and healthy. Maybe he looks like he could be an athlete. If this young, athletic guy came up to you and asked you to give up your seat so he could sit down, would you? Honestly?

Sorry, but you probably wouldn't. I'm not judging your character because I think that's everyone's natural reaction. Why does this healthy looking kid need a seat? Surely he can suck it up and stand for an 8-minute train ride.

But maybe this guy has RA. You can't see the effects of the disease because he's too young to show any major deformities. While he seems to be okay, he's really not. In actuality, every joint in his body is swollen and hurting. The pain in his back and feet is unbearable. Maybe he needed to walk 5 minutes to the train station, leaving him extremely fatigued. Believe it or not, sometimes a 5 minute walk is enough to keep a person with RA bedridden the next day.

I'm not saying that this is always the case. RA, or any autoimmune disease for that matter, affects everyone differently. It depends on whether a person is in remission (no disease activity) or flaring (a period of intense disease activity that can last any amount of time). Some days I choose to stand on the train because I feel well enough to. However, on the days that I'm flaring standing in any form is unbearable. Either way, I would never go up to someone and ask for a seat. There's too much stigma involved.

RA is an invisible illness. Sometimes I wish it wasn't. I get accused of "faking it" more often than I should, and I know I'm not the only one. I hear the nasty comments people make at the supermarket when a "healthy" person parks in a handicapped spot. I don't understand why it even matters to those people, because most of the time they aren't parked in a handicap spot or have handicap plates.

This is a long-winded way of stating the obvious. My point is that the next time you find yourself observing someone, remember that there's always something deeper than what you see at face value.

Why I'm Here

Adults often joke about how younger people think they're invincible, how we live with the impression that nothing can hurt us because we're young and able-bodied. Sometimes we're guilty of being procrastinators. We put things off because we think, “Oh, I'm young. I don't have to start worrying about ___ until I'm 50.” I had that mentality for a long time too.

Then I got diagnosed with an autoimmune disease.

It was 3 years ago. I was 19 years old and sitting in pain in a rheumatologist's waiting room. I was the youngest patient there by at least 40 years, and the other patients were making me anxious with comments like, “But you're just a baby.”

“This doctor better find something wrong. If he brushes me off like the last quack, I'm gonna punch him.” I muttered to my mother, who was sitting next to me flipping through a magazine. Pain tends to make me cranky.

“Relax, just listen to what he has to say.”

I sat in silence, praying that this guy would finally figure out what illness had been plaguing me for the past 4 years of my life.

Finally it was my turn to see the doctor. After greeting me, he scanned my blood test results. “A normal person's inflammation levels are usually at a 5,” he said. “Yours are 13.6. No wonder you're in so much pain.” I handed him the x-rays that he asked me to go get after my first visit two weeks prior. He examined them quietly, then took my hands to feel the joints in my fingers and wrists.

He looked up at me then, and with a smile said,“Congratulations, you have Rheumatoid Arthritis. You and I are going to become best friends.”

It was a bittersweet moment. On the one hand, I now had an explanation for why I could sleep 20 hours a day ever day and still be tired, and why I could no longer type or climb stairs. That was a relief.

But now I had an incurable autoimmune disease to battle, one that would only get worse with age. Without getting too technical, having Rheumatoid Arthritis (RA for short) means that my immune system is attacking my body instead of germs and viruses. While my entire body is affected, most of the damage happens in my joints. 1% of the U.S. Population has this disease, and they think that it's a combination of genetic predisposition and environmental factors that trigger it. Don't worry, it's not contagious.

Basically, not a day goes by that I'm not in some sort of pain. When I get sick, it's usually pretty bad, since my body can't fight the infection. And someday (hopefully not anytime soon) I'll start seeing physical deformities. You can look up photos online if you want. I don't because they just spur a panic attack.

My entire life has changed since my diagnosis. I see the world differently now. I find humor in the smallest things. And I blog about it because, you know, I might go insane otherwise.