Bringing RA Out of the Shadows

This week was, Rheumatoid Arthritis (or Rheumatoid Disease) awareness day (February 2).  I’ve been thinking about how little people know about RA and how it affects those of us who suffer from RA. I was first diagnosed when I was 14.  It is hard to believe that this was only 16 years ago and there was limited access to the knowledge that internet resources provides us nowadays.  At the time, the only knowledge my family and I had about arthritis was simply that it was something old people got.  So we were very confused to find out that not only were we wrong, but now it was something I’d have to live with for the rest of my life.  Thankfully, the librarians at my school did quite a bit of research and gave it to my mom so she could be better informed and I learned as much as I could from my doctor.  Since then, I’ve always made sure to explain RA to those around me even if it doesn’t affect them directly.  I believe that educating people about RA will bring more awareness and make the lives of those living with RA much easier.

Since my diagnosis, the internet has made it easier for everyone, including myself, to learn about RA and what it consists of.  However, not many people start researching a chronic condition if it doesn’t affectt them.  According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, RA affects less than 1% of the population.  This small percentage isn’t nearly enough to achieve and create the type of awareness that other more well known and more publicized diseases have attanined.  Unlike ALS, Cancer, and Autism; it isn’t awlays easy to recognize when someone has RA.  Unless it has already damaged the patient’s joints enough to be visible to those around them.  Because of this, I‘ve had to deal with the classic “but you’re too young to have arthritis,” or “my grandma has that!” Most of the time I just explain that it’s not the same type of arthritis and that people can get RA since birth.  No age group is safe from autoimmune diseases.

I’ve had many unfortunate encounters with people who have thought I was exaggerating my pain, or making up that I had an illness that was “impossible” for someone as young as 14 to have.  It also doesn’t help that for the most part, this is an invisible illness.  So people can’t tell from looking at you that you have a legitimate medical condition.  I’ve been alienated by coworkers, called lazy by friends and family, been blocked in a handicap parking spot, and countless other hurtful encounters simply because there is not enough information out there for people to become fully educated on RA.

I believe that it is our duty to help inform people about what RA consists of.  Explaining it to those around you can be difficult because of the preconceived notions people have of arthritis in general.  I’ve found that it is always helpful to first explain the difference between RA and the arthritis your grandma might have and then explain in what ways it affects you in your everyday life.  This way people will not only understand what RA is doing to one‘s body, but also how it affects one‘s life.  Educating oneself and those around us on RA will not only make everyone’s lives easier, but will also bring more awareness and hopefully bring us closer to finding a cure.

National Institute of Arthritis and Musculoskeletal and Skin Diseases >>> http://www.niams.nih.gov/health_info/rheumatic_disease/

For information on RA awareness day (and image) >>> http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day/

Advertisements

Wheelchair Antics

I recently found out on a recent survey from rheumatoidarthritis.net, that about 30% of patients with Rheumatoid Arthritis feel embarrassed about having RA. I found this quite shocking since we have no control over being healthy or not. Furthermore it made me reflect about how RA has affected me. I asked myself if I’ve ever felt embarrassed about it. The only time in my life I’ve ever felt ashamed was in my early 20s. I was confined to a wheelchair for about a year and a half. I had accepted the fact that due to this affliction, a wheelchair would be the best method and mode for me to establish some sort of control and independence from it. I was not going to let RA get the best of me and limit my enjoyment of my life. I used that wheelchair to go and enjoy those moments that any person in their early 20s should experience. However, as with any type of medical mobility device, one immediately becomes the focus of attention. I wondered if people would feel the need to ask “what happened?” Or go out of their way to assist me or would they completely ignore me. These were just a few of many questions and thoughts that raced through my mind. The more I found myself dwelling on other’s thoughts and opinions, the more embarrassed I became.

When I was 22, I had no more cartilage in my knees, and after a while I could no longer walk, so I was in a wheelchair for quite some time after that. Wherever I went people stared at me. I don’t mind people staring, I’m a fun-loving person, and I don’t mind getting people’s attention when I’m trying to be funny or silly, but the looks on their faces was that of pity and I do not particularly like people taking pity on me. I had done so much more than most of those people had done by the time they were my age that I took offense to them feeling sorry for me. It was embarrassing for me to go out in public knowing everywhere I went people stared at me with pity. I know sometimes we all feel like everyone’s staring at us and it’s just our imagination, but I’m serious, we lived in a relatively small city where a young girl in a wheel chair is not too common a sight.

This went on for a while, but I couldn’t just stay locked up at home, so I had to face my fears, and just deal with it. So when my dad asked me if I wanted to go to lunch with him at a fast food joint that I really liked, I decided to go with him. The moment we went in, I could see everyone staring at me, and I’d stare back, but they would just look away and then look at me again when I stopped giving them the evil eye. It was quite exhausting. The whole time we were in the restaurant I kept thinking, if only these people knew I’m actually a very happy person who enjoys life they would stop looking at me with pity… and then it hit me… I had to make them see me the way I am and forget about the wheelchair.

I figured if they were going to stare anyway, might as well give them a reason for staring. As soon as we ordered our food, dad took me to our table. He asked what I wanted to drink, got up from the table to go get our drinks and the moment he started walking away I yelled at him “You better not ditch me here like you did last time!!” My poor dad!! The look on his face was priceless! He’s a very calm, serious man who doesn’t particularly like to cause scenes, he walked super fast back to the table and sat down with me giving me this look of “What in the world are you doing?” It was hilarious! I couldn’t stop laughing. I apologized but still couldn’t stop laughing, all of a sudden everyone in the restaurant was laughing too. My dad was able to go get us our drinks, and after all the laughter everyone stopped staring at me, and when they would look my way, there was not a hint of pity in their faces.

After that day, I’ve had many people look at me with pity again, but it doesn’t bother me anymore because I know who I am and all that I’ve accomplished and I’ve done that in spite of everything that RA has thrown my way. So people can feel however they’d like about me, it doesn’t affect who I am or what I think about myself. You can’t always make a scene in a public place to get people to see you the way you truly are, but you can always decide for yourself how you’re going to feel about people staring, or what people say or do around you.

I was able to get past my insecurities and was able to regain my independence and mobility.

Now, I’m never embarrassed for being sick or having certain limitations. Sometimes I feel irrationally guilty about it, but not really embarrassed. I’ve come to realize that embarrassment doesn’t just come from you, but from what YOU think or feel others think of you. Now, normally you can’t change how people (in my case, strangers) think or feel about you, but you can always change how you feel about it.

Running low on battery

One of the main symptoms that I’ve encountered with Rheumatoid Arthritis is fatigue. The level of fatigue has varied throughout the years, but it has always been there. At first, I thought the fatigue was a side effect of my medication (which, in some cases, it is) but as my medication changed throughout the years, I realized the fatigue was always present, no matter what medication I was in. Because of this fatigue that just feels eternal, I’ve figured out some shortcuts so I can get on with my daily life; and am now able (most days) to do everything I need to accomplish in a day.

The first thing I learned, I learned the hard way; just because I have enough energy to keep going right now, doesn’t mean I should keep on going full throttle. Why? After whatever it is I’m doing right now, I still have things I need to do later, and if I use up all my energy on the first task, the rest of the day I’ll be too exhausted to do anything else. I actually learned this taking a walk. Halfway through my walk, I started getting tired; but I knew I had enough energy to keep going, so I decided to push myself and keep going. I made it to the place I was going; but I had no remaining energy to get back to where I started. I had to ask my cousin (who was walking with me) to send someone to go pick me up, which made me sad instead of empowered by my walk. That day I learned that my body has a certain amount of energy to give me, it’s not anything close to what a healthy person has, but it’s what I have to work with, so I need to manage my energy in a way that works for me and my lifestyle.

Another thing that has greatly helped (but I must confess, I don’t actually do anymore) is exercise. Since I was diagnosed, everyone always told me I should exercise and do my therapy… but I felt SOOO TIRED! They said exercise would help with the fatigue, but that didn’t make much sense to an exhausted teenager. About 4 years ago, my girlfriends and I decided to go to Vegas for my birthday and I decided I was going to get fit enough to be able to walk as much as I needed to in Vegas, and I was going to look good doing it. I joined a gym, got a trainer who knew I had RA and did research on what I could and couldn’t do. I always left the exercise until after work, so whatever energy I had left in the day was all going into exercising, but I quickly figured out that I was having more and more energy everyday. I felt better, stronger and more energized than I had in years.

After the gym, I didn’t go back to my original weight, but I was still at an average weight for my age and height. I’ve never had a real weight problem, but when I started taking prednisone, I gained 20 pounds in 3 months, and I noticed a change in how much energy it took me to get from point A to point B. Not only is maintaining a healthy weight excellent for keeping your energy levels higher, but it will help keep all that extra weight off of your joints and keep them healthier longer.

Something that I’ve suffered through pretty much since I can remember is insomnia. Not getting enough sleep is terrible for anyone, and for someone with chronic fatigue is even worse. Some people don’t have insomnia, but do have problems getting enough sleep either because they have too many things to do, or too many things to think about; this is counterproductive… The next day you won’t have the energy to finish what you started the day before or do what you were up all night thinking about. Get your 8 hours of sleep, and take some breaks throughout the day.

Cut yourself some slack, you’re not superman. For me, showering is very exhausting, so after I shower, I lay down for about 30 minutes; I don’t sleep, I use the time to go online, or read a book for enough time for my body to recover from exhaustion. After this 30 minute break, I feel re-energized and can keep going on with my day without feeling extremely tired. The way I see it is, if my phone is running out of battery, I charge it; I don’t expect it to keep working for hours and hours on 5% battery… why expect my body to get through an entire day on 5% energy?

On the other hand, there’s also the problem of sleeping too much, or simply not wanting to do anything. These are usually signs of depression, if you’re depressed, get help. Whether it is in a support group, talking to friends, with medication, or talking to a counselor. Depression causes even more fatigue and pain than what you normally would have with RA and the medication side effects alone. You don’t want to just “suck it up,” talk to someone who can help you through it, and get supportive friends and family to try to help motivate you to get out of bed.

Talk to your doctor, some medication for RA actually helps with fatigue. Some 9 years ago, or so I started taking Remicade, now I don’t know if this is normal for other people, but the day after my infusion, I felt like I had the energy to run an entire marathon… I noticed, however, that as the month between infusions was coming to an end, I felt extremely tired all the time just like my body was running out of battery. But, I enjoyed the fact that most of the month, I had much more energy to do everything that I needed to do. Remicade stopped working for me, and I haven’t felt that reaction with any other medication, but every body is different, you may not have that reaction to Remicade, but talk to your doctor, there may be something he or she can do to help by adding or removing certain medication.

Explain to those around you that fatigue IS a part of RA. Getting people to understand the fact that you’re not being lazy, you’re just too exhausted is not an easy task but a necessary one. When I was first diagnosed, I was falling asleep all the time, the fatigue was so overwhelming it was just making me fall asleep everywhere. I made sure my family and my teachers knew that I wasn’t suddenly suffering from narcolepsy as well as RA, but that I was just severely exhausted. I’ve since have come to have to explain to friends, boyfriends I had in the past, co-workers, bosses etc. It doesn’t always work, and even the ones who do understand are not always supportive, but it’s better than going through life feeling misunderstood by those around you or trying to overexert yourself so people won’t think you’re being lazy.

The struggle with fatigue is constant, but manageable if you do at least some of these things. There are many factors that can alter the amount of fatigue you’re feeling, but if you counter those negative factors with positive healthy habits, I think it kind of balances out. Remember to take it easy on your body, you’ve only got one and it’s attacking itself, so you have to work extra hard to make sure it doesn’t get any more damage than what it’s already doing to itself.

Making the Best Out of Crazy Moments

Since I’ve been diagnosed, I’ve had many crazy things happen to me mostly because of people’s ignorance on Rheumatoid Arthritis, the invisible illness. I get really upset, specially when they’re judging me without knowing what’s going on. I have several of these stories, and the thing that they all have in common is, at first they really upset me, and now they kinda make me laugh. One of the most common things that I’ve had to deal with is people giving me the stink eye when I park in the handicap zone. It happens all the time, so I hardly ever pay attention whenever it happens.

A few years back, I went to the mall and decided I didn’t know how tired I’d be after the walk around the mall, so I parked in the handicap zone. As I was parking, this lady in her 50s walked right by my car along with her mom who was like in her 70s maybe; they both gave me the stink eye, but like I said, it happens all the time so I didn’t think much of it. I got off of my car and the younger lady yells at me across the parking lot that I don’t qualify to park there. I had my handicap placard, so I just look at her and say, “but I do,” and I turned around and kept walking. She yelled again that she was going to call the police, and I told her to go right ahead and walked into the mall. I walked around for about 45 minutes, until I got tired and went back out. As I’m going out, I see this minivan parked right behind my car. My first thought was “it’s the crazy lady” but then I thought better of it, and realized normal people don’t have 45 minutes to waste in a parking lot just to prove a point and ruin somebody’s day. I was wrong.

I got inside my car, turned it on, and waited, maybe the driver was just waiting for someone to get out from the mall. After a couple of minutes, I got frustrated, and honked… nothing. I look in my rear-view mirror, and sure enough, it was the crazy lady from earlier and her mom. They decided to lock me in until the police got there. I realized she was on the phone and she seemed very upset, so I decided to wait until the police got there to get her to move. After about 15 minutes, I was losing my patience, and was tempted to get off the car and go yell at them and tell them to move. I thought about the possible outcome, and the only outcome I could come up with from such a crazy person was that she’d get out and physically fight me… Like I said, my thoughts are usually what makes these stories funny. I pictured her getting out of the car and pushing me or something, and her and her mom ganging up on me. Now, I’m not gonna lie, I was actually scared of getting my butt kicked by a 50 and a 70 year old lady, I couldn’t even outrun them, so I decided it was better if I stayed in my car. Of course, they were thinking I was perfectly healthy, so they wouldn’t attack a young woman who would be stronger than them, but I didn’t think about that then. By this time, I’d already been stuck in my car for like 25 minutes, I started becoming even more upset and impatient when I saw this security guard come out of the mall. He signaled me to stay in the car, and went to talk to the ladies, afterwards, he came to my car and explained the police wasn’t coming because it was a private property, and that the ladies wanted me to get some kind of fine or something anyways, so they wouldn’t leave until the police came. The security guard told me he was trying to calm them down and inform them that if the police did come, I could press charges and they’d be arrested. This gave me the biggest smile ever. I told him to tell them that if they didn’t move I’d call the police and accuse them of harassment, discrimination and keeping me against my will for what was now close to 40 minutes. They got the point and backed away. I thought that was the end of that, but the crazies were even crazier than I imagined, and actually followed me around for several blocks until they finally gave up.

Now this story is funny to me for several reasons. One, I find it insane for someone to spend an hour and a half of their valuable time trying to screw someone else over without knowing all the facts. Another reason I find this funny, and this is usually why I find everything funny is my train of thought… At first I was so angry, then surprised that they’d wait so long, and then I was actually scared that some 50 year old lady was going to try to hit me in the middle of a parking lot and I’d be defenseless. You should’ve seen how that fight went on in my head, it was hilarious to think of a lady my grandma’s age (the one in her 70s) pushing me down and kicking me while I was down… it was like straight out of a comedy movie.

Don’t get me wrong, I get upset too when I see someone who seems healthy park in the handicap zone IF they don’t have a placard or license plates to state they can park there, but I’ve NEVER gone to the extent of locking them in their parking space. I’m not saying I always laugh it off, when it happens I’m furious, but later on when I’m thinking about it, I find it hilarious how I must be one of very few people to be afraid that a seventy-something-year old lady is going to beat me up. Seriously? But at that moment, I’m just made aware of my limitations and realize that if a five year old can bring me down, maybe a lady in her 70s can too. I’ve since realized that if I’m ever in a similar situation, I’ll just call the cops myself, plus I carry pepper spray, just in case some senile old person tries to attack me. There’s a lot of ignorance about “invisible illnesses” out there, so if I’d let it ruin my day every time I encounter someone who doesn’t know young people can be handicap too, I’d never be happy. So I just make the best of it, and realize how there’s always something funny to every story. I can’t think of anything that’s ever happened to me, even in my darkest days, when I don’t have something hilarious that crossed my mind or I actually did to go along with every story. It’s awesome to have only one day ruined by a crazy person, but have a lifetime to remember the hilarity of it all.