Category Archives: Awareness

Why We Need More Ice Bucket Challenges

During the final weeks of August, I couldn’t sign onto Facebook for more than five seconds before stumbling across yet another ALS Ice Bucket Challenge video. These videos featured people, both ordinary and famous, dumping buckets filled with ice on their heads and nominating three new people to participate in the name of raising awareness for Amyotrophic Lateral Sclerosis, a neurodegenerative disease that affects the motor neurons. If a person was challenged, they had 24 hours to post a video or they had to donate $100 to the ALS Association.

I was getting cranky. The environmentalist half of me cringed with each new video that popped up. I considered all of the the people who don’t have access to clean water. I thought about the awful drought in California and how despite lacking water, people were continuing to waste so many gallons for the sake of 20 seconds of Facebook fame. Like many of the other trends that I ignore on social media, I ignored this one too and hoped that no one would ever challenge me.

Then I was nominated. The thing I had spent so much time passively ignoring was now staring me in the face. Do I just pretend I didn’t get any notifications? Do I just write a post saying I was donating and that’s that? Or, do I try to see the good behind it all?

I had to start looking at the facts. Donations had hit 8.2 million dollars by that point. Even if people were only participating to be a part of the crowd, they were learning what ALS was in the process. I knew what the disease was because of stories my grandmother told me about her older sister, who died from it. But according to the ALS Association website, only 30,000 people in America have it. $8.2 million raised to help find a cure for 30,000 people. You have to admit, it’s an impressive and admirable feat.

That’s when everything clicked. I was looking at this challenge from the wrong angle. When I removed my social media bitterness from the equation, I realized what a powerful tool the ALS challenge was. Couldn’t this same concept be applied to other causes? Causes like RA awareness?

All of us with RA complain when someone compares our condition to their grandma’s arthritis. We’re often accused of “faking” illness. And we’ve all had that moment when we wish more than anything that an unsympathetic healthy person could switch bodies with us for just ten minutes.

No, I’m not advocating that we dump water on ourselves. What I am saying, however, is that sometimes advocacy goes far beyond newsletters and 5k runs. We live in a time where technology rules our lives, and the Internet is far more powerful than we think. If the Internet can give us RA forums and blogs full of hope and support, then couldn’t it also help us find a cure?

I’ve seen some people with RA try to create their own ALS-esque Facebook challenges, but they don’t seem to be catching on. I hope one does someday, but that will require large numbers of participants.

Anyway, I manipulated the ALS challenge so I could participate. Rather than dump fresh ice water on my head, I decided to jump into 55 degree pool water at midnight. Believe me, it wasn’t pleasant.

It would be wonderful if RA awareness could become a mainstream topic. Let’s work on that.

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RA And Sjögren’s Syndrome

Though I’m living more pain-free these days, I don’t think my eyes got the memo. Quite frequently I wake up feeling like I spent the night frolicking through a windy desert. Sometimes I’m forced to leave my desk randomly throughout the day (as I just did while in the middle of writing this sentence) to dart into the bathroom and attempt to put eye drops in my eye (I miss on the first try every time. Without fail). It becomes a bit of a problem when your job requires you to stare at a computer all day.

It’s not rare for Rheumatoid Arthritis to affect other parts of the body besides the joints. Sometimes certain medications people take for RA are the culprits. A lesser known fact is that there are other medical conditions that develop as complications to autoimmune diseases like RA. Sjögren’s syndrome is one of those complications. It is an inflammatory disease that affects tear and salivary glands. According to the American College of Rheumatology, between 400,000 and 3.1 million adults have Sjögren’s, and half of those people have a disease like RA or Lupus. A rheumatologist can test for it during a routine visit. I haven’t been tested for it, to the best of my knowledge. Either that, or I have been tested for it and it came back negative.

The good news, it seems, is that the symptoms of Sjögren’s may go away on their own. Certain RA drugs like Plaquenil may help alleviate symptoms.

Even though my eyes get dry and itchy and my mouth sometimes feels like it’s stuffed with cotton, I’ve found that drinking a lot of water and keeping artificial tears in my bag really helps. My favorite brands are Blink Tears and Clear Eyes Natural Tears. Just make sure that whatever drops you get don’t contain an antihistamine or other allergy component.

Anyone else have this issue? What have you done about it?

 


Hobby Lobby vs. Rheumatoid Arthritis

While I try not to get political in my blog postings, yesterday’s Supreme Court decision in favor of Hobby Lobby is too big a deal to not talk about here. If you have no idea what I’m talking about, check out this article from Mashable.

The ruling is appalling. Not only did some men decide that it was okay to take away women’s reproductive rights in the name of religion, but lots women now have something extra to worry about: the consequences that come from getting pregnant while having a serious disease. Okay, sure, women can still go buy birth control on their own. It just wouldn’t be covered by insurance. But birth control is expensive, especially if you’re already struggling to afford the medications necessary to keep you alive.

Most people know that cancer patients need to come off their chemo drugs before trying to get pregnant. What most people don’t know is that women with autoimmune diseases like Rheumatoid Arthritis are often prescribed those same chemo drugs to combat their immune systems. Drugs like Methotrexate are poisons that often lead to miscarriage or serious birth defects.

I’m lucky. My doctor has decided that I don’t need aggressive treatment for my RA yet. He’s purposely keeping me on what he considers “baby friendly” medication for as long as possible. Most women don’t have that option. Women with aggressive autoimmune diseases have to plan their pregnancies as much as two years in advance. They need to quit their medications and allow the drug to work its way out of their systems before they can even try to conceive, which can take months or years.

I can’t imagine how painful this ruling is for these women. I can’t imagine being told that I have no choice but to risk suffering through the heartache that follows a miscarriage that would have been avoided if certain forms of birth control had been available.

I have RA, I’m engaged, and I’m looking for a full time job. Do I seriously need to limit my job options because my future boss may have some ridiculous vendetta against my reproductive health and the choices I make with my future husband? Anyone else find it highly ironic that Hobby Lobby’s owners claim they won’t support abortifacients (chemical abortions), yet they just made it more possible to have unwanted spontaneous abortions via chemo drugs? Yeah, a spontaneous abortion (miscarriage) is not the same as an abortion. I get that and I’m not trying to start an argument over which is worse.

My point is that no one should have any right to dictate the decisions I make based on their beliefs. Religion is something that is supposed to be personal. I’d never try to enforce my beliefs on anyone, and I have no respect for people or companies trying to push me to follow their supposed morals. Where is the morality in putting a couple through emotional and physical trauma?

If this whole argument is over “religious freedom,” then where the hell is mine?

 

 


Rheumatoid Awareness and the Invisible Battle

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Today is Rheumatoid Awareness Day. While every day should be a day of awareness, someone happened to choose February 2nd to go all out with the activism. In honor of this effort, I wanted to share with you a piece I wrote for a class blogging project. I’ve discussed the issues with “invisible illnesses” before, but it never hurts to keep emphasizing how much they impact people.

 

“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.”


The Invisible Commuter

Photo courtesy of http://188hughlowstreet.wordpress.com

Photo courtesy of 188hughlowstreet.wordpress.com

Trains suck.  I lived in Piermont, NY for 8 months, and my commute to school/work was 70 minutes each way.  I didn’t mind the ride itself; I got a lot of work done during those commutes. The part that sucked was that trains can get extremely crowded sometimes, especially during rush hour and on holidays. Luckily, my commute isn’t that long anymore since I’m back in New Jersey, but my biggest problem with commuting hasn’t gotten easier.

I was interning in NYC this past semester. That meant I had to battle other commuters for a spot on an always-crowded Path train twice a week. Getting elbowed in the face by someone taller than you is bad enough on its own, but couple that with sharp pains in your back and feet and you have a recipe for a bad mood and crappy day.

Like many other trains, the Path has a designated handicap section. When I was healthy, I didn’t put much thought into their purpose. But let’s think about this: would the average person really give up their seat for someone like me? Someone young who looks perfectly healthy? Chances are, no. And chivalry is dead on trains (except for that time when a 15 year-old boy offered me his seat and I was shocked speechless). I think in general people expect “handicap” to mean that you’re in a wheelchair or on crutches and look the part of someone who cannot stand up on a crowded train. Even then, some people are inconsiderate enough to not move for those people. What reaction do you think people will have if I asked someone to give up their seat for me? Interesting to think about. I know I would never test that theory. Part of me is still a bit too proud to admit defeat, as stupid as that is. Point being, we really do need to stop judging people based on appearances only.  Lots of people are suffering in silence because they’re worried about the stigma or backlash. That’s the worst part about having an invisible illness-even worse than the illness itself.

Happy Monday!


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