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.”

An Update

It’s January, and thankfully I’m still in remission. As cold as this winter has been (it was -14 one day) I’m still managing to navigate through each day with pretty much no pain or stiffness. I thank the fish oil caplets and turmeric I’m taking religiously for that. But even with all of this good news about my health, I can’t help but feel a little anxious. How long is this going to last?

Worse Than a Bikini?

If you could change one thing about your body, what would it be?

I’d ask for different hands, unlike my teenage self who would’ve said she wanted a flatter stomach.

I distinctly remember the day where I realized how ashamed I actually was of my hands. My mother had just had surgery for a deviated septum and asked me to go with her for her follow up doctors visit. I sat in the waiting room crocheting (not knitting, which involves two needles and which I loathe doing) as we waited for her name to be called. An old lady came out into the waiting room then. Her eyes locked onto the hat that I was working on. “Oh, I used to crochet when I was younger. I miss it a lot, but I’ve got Rheumatoid. She lifted a hand off of her cane to show me what she meant. Her hands were completely deformed (I think it’s called swan neck deformity), mangled much in the same way that you would see in a cartoon where the character’s hand was run over by an army tank. I couldn’t stomach it. My mother continued talking with her, while I sat there trying to prevent a panic attack. There was a lump in my throat, no air in my lungs. If she stood there any longer, I was going to have to leave the room to hyperventilate.

She finally left. I was ready to faint. My mother saw how red my face is, how puffy my eyes were from holding back tears. Seeing pictures of something is one thing. Seeing it in person is a whole different ballgame. “Medicine has come a long way,” Mom said, knowing what I was thinking.

I stretched my hands out in front of me. I wasn’t in remission then, and I was living with the idea that remission would never happen and that my joints would continue to disintegrate. I studied my hands intently. They were swollen and red from the heat my joints were throwing off. There were dips in my knuckles from where my finger joints were separating. If I moved one finger, they all had to move from lack of flexibility (it’s still really hard to flip someone off). There was no chance of straightening my fingers out, so I was walking around with monster claws. Even though I’m in remission now, the damage that was done to my hands is irreversible.

Is there a little bit of vanity here? Yep. I don’t get manicures or wear rings because I’m so self conscious about my hands. I’d rather walk around campus in a bikini. That lady taught me something important though. Why do we let our fears about how we look  prevent us from doing the things we love? I don’t know how she feels about the way she looks and never will, but she sure as hell wasn’t happy with the fact that she couldn’t do something she loves anymore.

I worry about how long my hands will be functioning. Will I have to stop crocheting one day? Will I need to give up my jewelry business? What about chopping onions for dinner?

I don’t know what the future will bring. My boyfriend asks me all the time why I keep picking up new hobbies. Why not? If I’m not gonna have use of my hands in 40 years, then why shouldn’t I try as much as I can now?

A Breakup Letter

To My Dear Black Sneakers,

We’ve been through so much together. We first met five years ago when my new movie theater job required that I have all black sneakers. I was frustrated about having to go out and drop money on new shoes simply because the black sneakers I was already in a relationship with had a light gray strip on them and they weren’t allowed. I walked into the independent shoe store near my house, and I was somehow magically drawn to you. We’ve been pretty much inseparable since then.

We’ve spent seven days a week together since; we went to class together Monday through Thursday and to work Friday through Sunday. You supported me during those long 14 hour shifts spent selling popcorn and cleaning up theaters. We went to bars together, experienced first loves together, and traveled around the country together. But most importantly, we got through a pretty nasty diagnosis together.

Nobody understood the frustration that comes from not being able to wear 95% of the shoes on the market without some sort of pain. It’s expected that women my age wear heels when they go out partying. Friends made (eh, still make) fun of me for wearing nothing but sneakers. But you understood. You made sure to keep me comfortable and pain free, at least in terms of my extremely swollen and achy feet. You’ll never understand how appreciative I am of that.

Unfortunately, my doctors don’t want us together anymore. The podiatrist I saw a few weeks ago said that you’re old and worn down, and that you’ll be unable to care for my needs much longer. Even the custom inserts that are being made for my shoes won’t be able to salvage our relationship. Besides, my feet have become so swollen from the RA that I’ve gone up half a shoe size since we first met. People grow and change; you need to understand that.

As sad as it is to say, I’ve already replaced you; there’s a box containing brand new sneakers sitting on a chair in the kitchen. If it makes you feel better, they aren’t Nikes and they aren’t black. Doc wants me to wear New Balance or Asics from now on for their extra support, but finding all black sneakers in those brands is turning out to be an impossible task.

Please comfort yourself with the fact that you are the longest relationship I’ve ever maintained thus far.

 

Love,

Alyssa

Remission Possible

Last week I had my quarterly appointment with my Rheumatologist. I’m not going to lie: I was freaking out. I’ve been anxious every day since I got my blood work done two weeks prior to that visit. I’m always a mess prior to my doctor visits because of the “unknown” that comes with these appointments. I might think I’m fine, but my rheumy might see otherwise as he examines my joints.

My biggest fear was that he would think it necessary to put me on a stronger medication like Methotrexate. That’s the last thing I want to put in my body. I already felt awful about taking my prescription anti-inflammatory. I suppose it comes from belonging to a family that believes in the power of homeopathic treatments. Or maybe it comes from all of the black box warnings that come with my anti-inflammatory.

I sat in the doctor’s office nervously tapping my foot. Was I about to receive news that would flip my future upside down? Or would I instead be told that everything looks decent enough and that I could stay on my current treatment plan, but that there was no real improvement? The second scenarios is just as frustrating as the first. The second scenario shows no change, no progress. It doesn’t bring a person closer to pain-free days. It just means that your medication is doing the bare minimum. The only thing working in my benefit was that I wasn’t in pain at that moment in time. I hadn’t felt anything more than some random aches for a week, and I’m pretty sure those aches were a result of many hours spent on the computer.

My rheumy called me into his office then. He asked me how I was feeling, as always. “Better than usual,” I said. He took my hands and began examining them.

“Your hands look great,” he said, feeling my knuckles, “no inflammation whatsoever. Are you taking your anti-inflammatory?” I shook my head. “That’s a great sign,” he continued, “no pain?”

“I haven’t been in pain at all for a week. I started taking fish oil.” He continued examining my elbows and knees.

“Well, I don’t know how much the fish oil contributed, but I think you’re in remission. Let’s look at the numbers.” He pulled out my report and started reading off the results, comparing them to the last test. “I think you’re in remission. Keep doing whatever you’re doing.”

Remission. When I first diagnosed, that was the thing I wanted most in the whole world. Now three years to the month of my diagnosis, I’ve achieved it. I was floating on a cloud, and I wanted to tell the entire world how happy I was. I ran to my one on-campus job just to tell my boss the good news. She had been trying to help me find natural cures. I told every coworker who would listen. And even though I’m not the kind of person who likes to air all of my business on Facebook, I posted about it there too. 70 people “liked” my status and congratulated me. I was touched that people cared, at least enough to comment with congratulations and well wishes.

Now, how did I really know when I was in remission? I knew it was for real when I picked up a skinny Papermate pen and could sign my name without pain. I couldn’t hold back the tears anymore. I sat in my room and sobbed. This was real.

I know it’s not permanent. Remission isn’t a cure, only a period where the disease lies dormant. I may flare again next week. I may not flare for another few months or years. But trust me when I say that I’m making the most of this moment, the fact that I’m in little to no pain, and that I’m seriously loving my life right now.

Exam Panic

Long time no see! I recently began my last year of college (yikes!) and my professors have been keeping me pretty busy. I’m using this semester to focus on my writing, so one of the classes I’m taking is called “Writing & the Blogosphere.” I’m learning more about blogging than I ever thought there was to know. We’re required to keep a blog for the class, but sadly I can’t use any of the ones I already have. I had to create a new one, but I’m still focusing on the topic of RA. Unlike this blog, however, I’m trying to reach out to those who don’t have the disease in an attempt to spread awareness (if you’re interested in reading it, click here). Last Thursday one of my posts was workshopped in class. I received some wonderful comments and a lot of support from my classmates, and I’m truly touched that they care so much. Below is the entry that I wrote. If you want to read the responses from my classmates, click the link above. Let me know what you think!

 

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.

My Hair and Me

Here’s one example of how we take things for granted sometimes. When I first got diagnosed, the last thing I thought RA would affect would be my ability to take care of my hair. I mean, it’s not that difficult when you think about it: you wash it, brush it, maybe use some hairspray. It’s really not hard.

I’ve always had an interesting relationship with my hair. When I was a  Freshman in high school, I decided I was bored with my current hair style and wanted to be more daring. On a whim I cut my extremely thick, shoulder-length hair into a very short pixie. It was different, it was easy to manage, and I loved it. I kept it for the next 5 years.

Me at age 16. 2007.

Me at age 16. 2007.

Then I hit my 20s, and I realized I needed a change again. So I decided to grow my hair out. It was a pain, and it involved a lot of patience, headbands, and bobby pins, but I did it and I really loved having long hair again. The options were endless. Bun? Ponytail? Curly or straight? I could now do whatever I wanted.

But then a new problem arose. My new long and thick hair knotted quite easily. I didn’t have the strength in my arms to brush out the knots. Sometimes I couldn’t even lift my arms up above my head. That meant asking my mother to brush my hair for me every night after I showered. But then I needed to make sure that it didn’t knot again in my sleep, which meant asking my sister to braid it (when Mom and I tried, our braids were an awkward mess because of our lack of dexterity).

I was beginning to get really frustrated. I had waited two years to grow my hair out again. I was supposed to be able to use hair dryers and flat irons (nope, too heavy, at least sometimes) without issue.

I realized I had a battle on my hands: my hair versus my freedom/dignity. Maybe that sounds really dramatic, but bear with me here. For many women, hair is a symbol of beauty and confidence. And here I was, with little confidence in my ability to take care of the messy mop on my head. Which in turn toyed with my self esteem. In my head, I didn’t feel beautiful anymore because I couldn’t even do the simplest of tasks. The hair had to go, but not without one last picture:

The day of the cut.

The day of the cut.

The trip to the hair salon was a bit somber. Mom came with me, and when we pulled up to the building I seriously thought about calling it off and going home. But I knew I had to do it. I had picked out a really cool cut, so at least I had something to look forward to.

And so they chopped it all off. I was back to pixie short. While I miss the length, now I had something I could manage on my own. Plus, I wasn’t getting stiff necks anymore from all of the extra weight on my head. The only bummer was that I wished I had cut it because I really wanted to, not because of necessity. But no matter. Things were gonna be okay.

I didn’t snap a photo of that haircut, but I did take one of the cut I got this past Saturday:

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The after shot.

Clearly, I went shorter this time. I mean, my head is shaved except for the top. This does require a tad more maintenance than a pixie, but it’s still so much easier than long hair. I don’t even need a brush anymore! I just slap in a little gel and some hairspray and done. The great part about this cut was that I chose to go this short. This was for style, not necessity. I think it suits me, no?

Traveling with RA

A few weeks ago a friend and I decided to take a road trip to Massachusetts for the weekend. Our plan was to leave New Jersey early on Saturday morning, take a detour through Rhode Island, and be in MA by dinnertime.

We made it to Providence, RI by 11:30. Since we’re both nerds looking to apply to grad schools

A Harvard Building

A Harvard Building

this year, we stopped at Brown University, just to walk around the campus. Of course it was dead because the Spring semester was over, but you could still get a feel for the campus. We stopped at Julian’s Restaurant for lunch. I chose it because Rachel Ray recommended it on one of her many TV shows, and I trust her opinion (even though I don’t know anything about her off screen). Turns out the place is so popular, we didn’t get seated for 40 minutes. Worth the wait though. Next stop, Cambridge. I finally got to see Harvard!

The following day was spent walking the Freedom trail in Boston. It took us a few hours, but we managed to see a decent portion of it. It’s a good thing we started early in the morning, because by the time we got back to the car it was almost 90 degrees and we were drenched in

Old Granary Cemetery in Boston

Old Granary Cemetery in Boston

sweat. All I can say is thank the gods I wasn’t having a flare that day. Otherwise I would have never been able to walk the two miles. I won’t bore you with minor details (but I WILL tell you that I got to visit another old cemetery. I love old cemeteries!). On Monday we headed home, with a quick stop in Connecticut to visit Yale (I told you, nerds).

So now to the point of this entry. I don’t know about other RA sufferers, but sometimes the idea of traveling more than a few hours away from home absolutely terrifies me. I’ve been invited on multiple trips around the country, and each time I worry about the same things. What if I have a flare? What if I can’t keep up with my friends? What about my

Paul Revere's Home

Paul Revere’s Home

medication routine? Would that be disrupted? Would I be too tired to enjoy myself? I’ve scared myself out of taking weekend flights to San Francisco and LA because of this.

I ask enough “what if” questions to drive myself nuts sometimes. Most of them are purely irrational fears. So I wonder…does anyone else think like this? Or am I just psychotic?

 

All photos are my own.

The Gardening Dilemma

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Sunday I decided to wage war against the backyard. Due to all of the rain we’ve been having here in New Jersey, the garden has been neglected for a few weeks. I have quite a few battle scars from trying to tame my roses, but everything looks beautiful now. The only problem is that on some days, yard work can seem like an impossible task for a person with RA. I’ve compiled my list of shortcuts here. They’re all common sense tips, but sometimes I feel like we try to kid ourselves into believing that we don’t need to modify our habits to accommodate RA.

1. Pick a cool day to work outside. Or work early in the morning or after sunset. That seems like a no-brainer, but the heat definitely affects me more now than it ever did before. I feel fatigued more quickly when the sun is out. The only reason I was able to work all day yesterday was because it was cloudy and windy.

2. Use sunblock anyway. We take medications that can make us more sensitive to sunlight. I’m on Plaquenil, and I will burn if I’m outside for even 5 minutes without sunblock. Just play it IMG_20130616_173012_676safe and put some on. Think of all of the wrinkles you’re preventing.

3. Take constant breaks. Work for 20 minutes, then take a break. Or do one task (like mowing the lawn) and then sit and rest. It helps with the fatigue and gives your joints a break from repetitive stress. Your body will thank you by not keeping you in bed the next day with a horrible flare.

4. Which is why it’s also helpful to break up tasks into days. Just like every other aspect of our lives, gardening sometimes needs to be done using baby steps. If all you’re capable of is mowing the lawn today, then that’s enough. See how you feel tomorrow. Your flowers won’t IMG_20130616_160337_187mind if you push back replanting them by an extra day.

5. Use good tools. It’s okay to spend a little bit more for them. I’ve come to realize that this is extremely important. I was using rusty garden shears to trim the roses. They were dull and put a lot of extra stress on my fingers, which made them lock up. I went to Home Depot and got myself a fancy new pair of ergonomic shears.

6. Use a chair and kneeling pad. Quite frankly, I don’t care if the neighbors think I’m crazy for trimming the plants while seated. I’ll take the judgement over the back pain. And for weeding and planting, I have cushioned kneeling board. That was also a worthwhile purchase.

Now they just need to invent grass that cuts itself…

All photos are my own.

A Quick Update

I’m in the middle of exam week, so I can’t really write the way I want to. I just thought I’d leave you a quick update about how I’m doing. I went to the doctor 2 weeks ago and was given amazing news: no methotrexate. I can stay on the Plaquenil for at least another 3 months. He didn’t see any more damage in my joints. However, he told me that he needs me to try to lose some weight to take the pressure off my knees. My goal is to lose at least 10 pounds by August, which is when I have my next appointment. This is going to be a huge challenge for me, which is why I’m publicizing it. If it’s not a secret, I can’t slack.

Okay, that’s it for now. I’ll see you after exams!