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?

 

 


My Miracle Pen

I’m a writer. Which means I write things, well… a lot. When I was first diagnosed with RA I was terrified that my painfully swollen and stiff fingers would prevent me from being able to pick up a pen. For the most part, I was right. The skinny, generic pens that you can buy in packs of 12 at the grocery store weren’t cutting it anymore. Inkier ballpoint pens and gel pens fixed the problem of having to press down hard on the paper, but they were still awkward to hold. So then I tried fatter pens, which were easier to grip, but they still required pressure to work. I was getting one benefit or the other, but never both.

So like any other frustrated, Internet-addicted young person, I turned to Google. That’s how I stumbled upon the PenAgain. It’s a weird wishbone-shaped writing instrument meant for people with arthritis, carpal tunnel, and other debilitating diseases. It’s designed so that you use the palm of your hand to guide the pen and apply pressure. Since a PenAgain pen only costs $5, I was willing to take the risk despite my initial skepticism. It couldn’t hurt to try it.

I pretty much fell in love with the pen, in case you didn’t get that vibe from the title of this post. It replaced every other pen bouncing around in my backpack. I felt less panic going into 3 hour-long college finals because I knew I could tackle the essays without worrying about my hands giving out. It was easier to jot down messages and fill out paperwork at work. Yeah, I totally got some strange looks from the people around me when they saw me using it, but that hardly matters.

Even though I’m in remission and can use regular pens for the most part, I still gravitate towards PenAgain. It’s easily one of the best RA-related purchases I’ve ever made. My only critique is that there are occasions when the pen will stop writing in the middle of a word, so I find myself scribbling on a piece of scrap paper to get it working again. Also, because of its design, the ink cartridges on these things are pretty short, so if you’re going to be using it a lot you’re going to want to have a backup pen or a stockpile of ink refills. I don’t mind this part so much because the refills aren’t expensive at all, and I realize that I write more than the average person on most days.

You can purchase a PenAgain pen (or pencil!) here.


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.

 


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?


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