RA Famous

People glorify celebrities, sometimes to the point of making them seem immortal. But even famous people have to deal with the not-so-pleasant realities of life, and that often includes battles with incurable illness.

When I was first diagnosed I took to the Internet to make connections with other people just like me. Google suggested that I search "Famous people with RA." Sure, why not? I was actually a bit surprised by the information that popped up. I've included a few of these people here:

Lucille Ball

The star of the classic TV show I Love Lucy was diagnosed with RA as a teenager (some sources say 17, others say she was 19). She had to stop modeling because of a really bad flareup that made it impossible for her to walk. She launched her acting career after recovering from that flare.

Pierre-Auguste Renoir

Not even famous painters are safe from RA. RA caused deformities in his hands that made it impossible for him to paint like a "normal" painter. He could no longer pick up his brushes and had to have his relatives tape them to his hands. Renoir's situation takes the idea of the invisible illness even further. I dare you to try to find signs of joint deformities in any of his paintings. 

 
Sandy Koufax

The jury is still out for Koufax. The baseball pitcher definitely had an inflammatory disease like RA, but he was never actually diagnosed as having it. He eventually had to stop pitching because of the damage to his elbow. 

Christiaan Barnard

The first doctor to do a human-to-human heart transplant had RA. Sixteen years after this feat, Barnard had to retire from his surgical career because he no longer had the dexterity in his hands needed to operate.

Clearly, people with RA are able to go on and have successful careers. Having the disease doesn't mean I have to spend the rest of my life in bed. When I was first diagnosed, I thought that it would be a death sentence for my writing career. How could I be a writer if I couldn't hold a pen or type? I realize now that it was a foolish thing to think. If Renoir found a way to paint back in his day, I can find a piece of technology to keep me going. Maybe I won't have use of my hands for the rest of my life. That's all the more reason to live it up now and make the most of it.

Source: http://www.health.com/health/gallery/0,,20496769_4,00.html

Remission Possible

Yesterday 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 ago. 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, which is a chemo drug. 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.

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. 

Ignorance is a Plague

I never thought I would believe in Astrology, but a recent string of events has me believing that Retrograde Mercury is in fact a real thing, and that it's out to make my life hell. Nothing has been going right for the past few weeks.

There was a day last week that was just all sorts of awful and also relevant to this blog. I was walking down the stairs to the light rail, as I do every weekday morning. There were two women walking slowly down the left side of the staircase, so I decided to stay to the right to pass them. Apparently I wasn't moving fast enough for the guy behind me, who felt he was justified in using both hands to push me forward from behind to get me out of his way faster. Unlike me, he had a train to catch. Fortunately, I have a habit of always keeping my hand close to the railing, just in case I lose a battle with gravity (or, ya know, get pushed from behind by an inconsiderate douchebag in a suit, because that apparently happens more frequently than originally thought).

After I calmed down and stopped wishing horrible bouts of diarrhea on the guy (with lots of expletives in between), I started thinking about how glad I was that he pushed me and not someone else. What if it had been an old lady that he pushed? Or a pregnant lady? Or maybe someone else with a really bad medical condition who wouldn't be able to catch herself? Did he only have the guts to push me because he thought I was able-bodied enough to not get hurt? Or did it not matter, because I was a woman and wouldn't fight back anyway? None of this excuses the fact that he did it, of course. Some people are self-centered enough to really not care who they are hurting as long as they aren't inconvenienced.

Anyway, this goes back to the point I was making about invisible illnesses awhile ago. Just because a person seems healthy doesn't mean they are. And just because you're in a rush doesn't mean you have a right to inconvenience others, or make them eat concrete for that matter. I think we need to bring back those Victorian etiquette classes...

You're Cordially Invited to an Ailment Party

RA is a systemic disease. It doesn't favor just a person's joints. It affect hair, skin, nails, and internal organs too. Because of this, a person with RA can experience more than just joint damage. according
to an article on health.com, a person with RA has double the risk for heart attack or stroke than a healthy person the same age. RA is considered as big of a risk factor for heart disease as smoking! Doctors think that the chronic inflammation that comes with having RA is a factor, but some medications that RA patients are given might play a role as well.

Did you know that people with RA are also more likely to get cancer? Again, while it's more likely because of the disease itself, the meds are also more likely to contribute. Chemo drugs are often prescribed for treatment because they can knock the immune system into remission. Actually, quite a few of the medications used to treat RA are meant for other things (the drug I'm on is given to travelers as an anti-malarial, though obviously I get higher doses of it). But back to my point: chemo drugs are known to cause cancer. Chemo, which is used to treat cancer, causes cancer. I'm still trying to wrap my head around that. Non-Hodgkin’s lymphoma has been linked to RA, according to this same health.com, as well as leukemia, some forms of lymphoma, lung cancer, and melanoma.


Autoimmune diseases like to travel in packs too. For example, my mom has both RA and Lupus. I know of other people who have RA and Fibromyalgia. Sometimes people have RA and Multiple Sclerosis.

I could probably write a whole book on all of the medical problems that come with an autoimmune disease, like chronic infections, anemia, depression, lung issues, stomach bleeding, etc. I won't though, because I've made my point already. There are a lot of risk factors, and information on these risk factors is available everywhere on the Internet. Then people wonder why people with RA are paranoid about switching medications, going for routine doctor's visits, and the like. I believe this is good information to have available, definitely. But like I said in an earlier post, it's easy to become overwhelmed and dwell on how negative things can be someday. I have moments when I do that too, as positive as I try to be all of the time. It happens.

Health.com article: http://www.health.com/health/gallery/0,,20485110.html

A Hairy Dilemma

Recently a friend invited me out for one of our weekly Starbucks runs. Our tradition is to buy our overly priced "handcrafted" coffee beverages and then walk along the waterfront to burn off the high calorie counts while catching up on life. On this particular night, we walked past a group of teenagers loitering around a bench and laughing obnoxiously. They became silent as we neared, and once my friend and I had walked a few feet passed them I heard them whisper, "What a dyke!"

This happens a lot, probably to the point where it shouldn't bother me anymore. I'm sure I give that impression to a lot of people, since I like shaving my parts of my hair off and I'm a tomboy at heart. But no, I'm not gay. It never fails to make me angry, though for more reasons than it would have years ago. These kids were more than likely basing this assumption on the fact that my hair is so short, without ever considering why my hair is short. It's an awful stereotype.

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 something 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.

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. I didn't feel beautiful anymore because I couldn't even do the simplest of tasks. The hair had to go.

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. I've since gone even shorter, though I'm due for a haircut as of the writing of this post. I miss the length, but now I have something I can manage on my own. I just wish that I could have cut it just because I wanted to, not out of necessity.

This is one of the reasons why I have a problem with these kids. They'd never make fun of a chemo patient with no hair. At least, I hope they wouldn't. But many women out there are forced to chop off their hair because of illness, and they are forced to deal with being insulted by ignorant people on top of dealing with their own emotional insecurities. It's not fair to them at all. I'm used to this sort of behavior from having short hair most of my adult life, but let's try to help those other women out, okay? If you're one of those people making comments, it won't kill you to keep your mouth shut.

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.