Category Archives: Daily Life With RA

Turtle in Peanut Butter

I hated running as a child. HATED it (and I was on the track team, go figure). I always finished last, was easily out of breath, and I knew I’d be limping for the rest of the day after a meet. In hindsight, running would probably have been less stressful if I had been aware of my RA.

Taken from Facebook

Taken from Facebook

Naturally, one would think that I would continue avoiding it at all costs. Except, after 10 years of a strict no-running policy and two years away from physical activity in general, I had something to prove to myself.  If the rest of my life is changing, why should my exercise routine stay the same?

So last week I decided it was now or never. I needed a way to de-stress fast. I called up my friend, downloaded the Couch 2 5K app, and headed to the park. The meme to the left is a wonderfully accurate representation of how that session went. And you know what? It doesn’t matter anymore.

I was out of breath. My sides were hurting and my muscles were on fire. I wasn’t sure I could run another step. I couldn’t keep up with my friend at all, and she kept doubling back to meet up with me so that we could at least do the walking portion of the program together. I could have made an excuse at any time, blamed my joints for being uncooperative. But I got up and did it.

In hindsight, it was never actually about running. My goal isn’t to run marathons or break records. The goal was to find a freedom that I thought was long gone. Two years ago, I could barely pull myself out of bed each day. Walking was difficult and stairs were impossible. Exercise? Ha…

I’ve come a long way. I accomplished a goal I never thought possible. The fact that I I’ve been accomplishing it without any sort of joint pain is just an added bonus. Every lap around the track is one more win against RA. This disease has taken so much away from me, but I’m drawing the line here.

Old me had to turn down plans with friends because it required walking more than a few blocks. New me is walking 4 miles a day and running for twenty minutes on top of that. That freaking rocks, and it’s better motivation than the 87492856875445211268089237 purple “Participant” ribbons I’ve collected. I’m getting my life back.

 

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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.”


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 was, 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.


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