Monthly Archives: April 2012

Why I Love Hand Dryers

Believe me, I’m not as crazy as the title makes me sound.  Here’s the thing: when you have RA, you’re in pain most of the time.  Even on days when the fatigue doesn’t hit you, you’re bound to have joint pain.  Since being negative and complaining about it usually only makes it worse, at least for me, I try to find other ways to find some temporary relief.  Along with my daily doses of Plaquenil and Celebrex, I’ve noticed that heat does wonders for my joints. Hence the hand dryer. On cold days, rainy days, or any other day that I’m flaring, I go into the bathroom at work every so often just to run my hands under the air dryers.  I find that it loosens up my joints just enough to make it easier for me to type.  Okay, maybe I am crazy, but I’d rather have people look at me like I’m nuts than not be able to do anything productive all day.

Obviously, the hand dryer only works for your hands.  It doesn’t do much for knees or toes.  However, that’s where my dehumidifier comes in.  I live in a basement apartment, and the winter weather is brutal on the joints.  So, I crank up the dehumidifier to full blast and let the temperature go up to 80 degrees in the apartment.  Since the whole idea behind the thing is to pull moisture out of the air, it really helps me feel great overall. No stiffness or aching a majority of the time.  On days that are a bit worse, you do feel a little stiff, but it’s much better than it would be without a dehumidifier.  You definitely need to keep a fan on in the room though.  My poor boyfriend almost had a heat stoke because it can become stifling at times. I totally recommend a dehumidifier if you have joint pain though. They aren’t expensive; we didn’t pay more than $100 for ours.

I’m stuck with this disease for the rest of my life.  It’s not going to magically get better one day.  The best approach to finding relief is a proactive one, whether that means holding a hair dryer to your toes or wrapping yourself up in an electric blanket.  Even the most rudimentary methods will help.  Trust me.

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Are You Sure This is Normal?

I wrote this yesterday, but didn’t have time to post it. However, I am feeling much better today.

I will be frank: I feel like crap.  I have been since Monday. I’ve been nauseous. I haven’t eaten anything substantial in four days.  I haven’t had a good night’s sleep either.  My joint pain and eye inflammation are nonexistent, but have been replaced by horrible back pain and a feeling of dehydration (even though I drink 3 or 4 water bottles a day).  I don’t think I have a stomach bug because the nausea is too sporadic and Pepto Bismol doesn’t help whatsoever.  I’m definitely not pregnant. I refuse to go on WebMD and use their symptom checker, because it will probably tell me I have stomach cancer, which will add a panic attack to my list of symptoms.  Stress? Possibly, since it’s the end of the semester, but I’ve been pretty chill lately.  Medication? Nah, doubt it. I haven’t changed prescriptions, and I doubt medication I’ve been on since November would start affecting me now. The only thing left that I can think of that these are just new RA symptoms that I’m experiencing.  This whole experience got me thinking though: how will I be able to tell the difference between “just another RA symptom” and something more serious? Mom gave me some pretty decent advice: “Start paying close attention to your body and how you feel, that way you will know when something is really off.” She’s right in the sense that I should start noticing things more, but even serious medical conditions can creep up on a person. Does this mean I will be running to the doctor every time something feels strange or off balance? Will I be able to catch something serious in time?

The problem with RA or any other autoimmune disease is that it affects your entire body, and you don’t know what it will attack next.  I’ll admit that I broke down in tears last night.  The anxiety of not knowing what is going on with your body, on top of the fact that you don’t feel well, totally sucks.  It took my boyfriend and a huge mug of chamomile tea to get me to calm down.  Poor Avi is so worried about me, but he does his best to keep me smiling, even when things are scary or upsetting.

I think the rule of thumb I’m going to follow is this: until a symptom becomes so intolerable that I can’t function in day-to-day life, then I’ll just suck it up and keep going. If it becomes too much, then I’ll see a doctor.  I see Dr. M every 3 months anyway, so if the symptoms keep up I’ll just talk to him.  Hopefully I’ll feel better by tomorrow. I’ve been going to work and school all week, so I guess there’s no need to panic right now. Living with the unknown can be tough, but I guess life goes on. It’ll all be okay in the end.


Being the Oddball

Today I’m having a flare. This is the worst one I’ve had in awhile. Everything is hurting, I’m exhausted, and worst of all, my eyes are inflamed and burning. I’m not sure if the eye problem is directly caused by the RA, or if it’s a result of the underlying autoimmune disease my doctor thinks I might have. Long story short, my ACE levels are pretty high, so he thinks I might have Sarcoidosis. Anyway, that’s not the point of this entry. My point is that I’ve been sitting in class and at work with my sunglasses on. It’s the only way I can function when my eyes get like this. I’ve explained to my coworkers in the past why I have to do it, so most of the time they’ll just ask how I’m feeling and leave it at that. Occasionally, someone will say something like, “What’s up Shades?” and give me a hug. When I went to History class, my best friend came up to me and said, “Wow, hungover?” Of course that doesn’t bother me, because I know he does that to make me smile.

What does bother me slightly is the looks I get from other classmates or customers at work. I know I shouldn’t let me bother me, but I’ve never liked bringing attention to myself, and of course walking into a somewhat dark room wearing sunglasses will do that to you. Every so often, you’ll get one bold onlooker who will have the audacity to come up and make a comment, something along the lines of, “What, do you think you’re cool wearing those indoors?” How do I explain my problem to them? Do they even deserve an explanation? If I do decide to give an explanation, then how would I sum up months worth of suffering into a single sentence? Lately I just tell people that my eyes are inflamed if I do say something. The people who matter know, so that should be good enough. I guess the point here is this…don’t judge someone because they’re doing something out of the norm. While a person may seem healthy and just a little wacky in the head, they could really have a condition like mine. I’m not pointing fingers. I’m sure if I was healthy and I saw someone wearing shades indoors I would wonder why too. I guess the other moral of this post is that even if you do stare and wonder why a person is acting strange, don’t be that jerk that passes comments. They make people uncomfortable, and honestly, you probably don’t deserve an explanation either.


“Congratulations, you have RA”

Actually, the exact quote was, “Congratulations, your mom gave you RA.” Dr. M. wasn’t saying it to be mean or anything. Mom started crying, and while I probably should have been upset about getting a diagnosis like that, I actually felt a wave of relief. It had taken so long to get a diagnosis, and now I finally knew what I was battling.

And now, a brief history. I’ve always had problems with my joints. I had to stop running track when I was ten because my knees hurt too much. My parents took me to different doctors, but they couldn’t find anything wrong. “It’s just tendonitis,” they would say. They sent me for physical therapy, but it didn’t do much good. I tried to keep running, but the pain became too much. I decided to quit track, as much as I hate to quit anything. My knee pain went away after that. I figured I just wasn’t meant to run. I had been doing karate since the age of 4, and I continued to practice and teach it even after I quit track. Then I realized that every once in awhile, my hands would lock up. It wasn’t too painful, but it sure was uncomfortable. I would try to shake them out and just keep going.

Fast forward to age 16, the year 2008. I lost my dad to a heart attack that April.The following May, I would have these episodes where I was in a ton of pain, unable to walk or even move. I was falling asleep in class, and would come home and fall asleep without doing my homework. My GPA went from a 3.8 to a 3.0. Concerned, my mom brought me to a GP that my aunt recommended. She tested me for Lupus, but the results came back negative. “You recently lost your dad. Sometimes depression debilitates people. Do you want to try antidepressants?” I nodded. I was depressed, so I figured anything was worth a shot.

That following Summer, I was sleeping close to 18 hours every day. Mom would scream at me to stop being lazy. I wasn’t being lazy though; I just didn’t have the energy. I stopped going out with friends or attending family functions. I just didn’t want to deal with people or pretend to be cheerful. This pattern continued on and off for the next three years.

In December 2010, I got together with my boyfriend, Avi. I was (and still am) happier than I’ve ever been in my life. My condition seemed to be improving. We’ve been an active couple from the start, going on road trips and exploring stuff. Avi is an avid hiker, and wanted to share that experience with me. I bought my hiking boots and was ready to go. Imagine how frustrating it was when I’d make it halfway up a mountain and then feel like collapsing because I was so weak. All I wanted to do was sleep. It was no longer an on-and-off pattern like it had been; now I was tired 24/7. My joints hurt like hell. I couldn’t type anymore, I couldn’t lift my arms, and walking was unbearable. I couldn’t pursue my fiction writing anymore, and I started calling out of work more frequently. I was getting C’s in almost all of my college classes, dropping my GPA down to a 2.7. I was angry, sad, and most importantly, my quality of life was suffering. Avi felt helpless too. He tried to do whatever he could to make me comfortable.

I started getting sick more often too. I had 4 various infections within 2 months time. I was nauseous all the time. I was having problems with my eye sight. The list goes on. I cried every night, telling Avi he should just break up with me so he didn’t have to worry about taking care of me. “No. I’m not leaving you because you’re sick.”

More doctors. No diagnosis. By November 2011, we were desperate and I was at my breaking point. Mom made an appointment with Dr. M, a Rheumatologist. He felt my joints and said they looked inflamed. He had 4 vials of blood and a stack of x-rays taken. I told myself that if he told me there was nothing wrong with me, I was going to have a fit in his office. Two weeks later, I went for my follow-up visit. That’s when I found out I had Rheumatoid Arthritis, just like my mom. She blamed herself. I told her I didn’t blame her, so she shouldn’t feel guilty. As long as I wasn’t fighting a battle against an invisible enemy, I’d be okay.


About this Blog

I’m Alyssa. I’m 20. I’m a full time college student, and a professional writer, among other things. I also have Rheumatoid Arthritis, an autoimmune disease which affects my joints and internal organs. A very good friend of mine suggested that I start blogging about my experiences with the disease. She blogs about her physical disability, and she said that she receives tons of emails from people thanking her for writing about something they can relate to. I’m not looking for thanks or recognition by keeping this. My hope is that I’ll be able to help others like me realize that they’re not alone. When people hear “arthritis,” they think it’s just an annoying illness that comes with aging. In reality, RA is much more serious and can affect people of all ages, including children and teenagers. Since most of the information I’ve read online about RA seems to be geared towards older adults, I’m hoping that I can help the younger crowd out. Being a kid nowadays is bad enough-throwing an incurable and often painful disease on top of that just flat out sucks. If you have RA too, I hope you will find the inspiration you need to live your life to the fullest. If you’re reading this for a friend or family member or just happened to stumble upon it while surfing the web, I hope this will serve to educate you and raise awareness.

Thanks for coming on this journey with me. I promise I will try to be as entertaining as possible.

Till next time,

Alyssa


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