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 >>>

For information on RA awareness day (and image) >>>


Wheelchair Antics

I recently found out on a recent survey from, 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.

Choosing the Bright Side of Support

When I was first diagnosed with Juvenile Rheumatoid Arthritis at 14, I looked forward to finding anyone who had the same condition so I could talk to them. Somehow I knew that meeting someone who was going through or had gone through the same things I was going through would make me feel better. I soon found out that that is not always the case. It really depends on the person. Some people, blogs, websites, magazines, support groups, etc. focus more on the negative part of a medical condition. When you’re looking for support, someone to cheer you up and hold your hand, talking to someone who focuses on the negative can really destroy you. I’ve been very blessed to have an extremely awesome support system, so I learned early on that just because you can talk to someone about your problems, doesn’t mean you should.

When I was diagnosed, I lived with my aunt in Mexico City and was very depressed. My aunt met a woman in her 40’s who had RA for several years and she looked fine. Since I was still in a wheelchair and being hand fed, my aunt introduced me to her to give me hope. I have to say, just seeing her made me feel better about my future. That is, until she started talking. I know she was trying to prepare me for what was to come, but she made it seem like it was the worst nightmare anyone could ever have to go through. All the meds, side effects, surgeries and people not being supportive. I was even more depressed than before I met her. I couldn’t understand, she looked fine to me (at least MUCH better than I was) but the way she talked about it made it seem like the end of the world. When I told my aunt, she reminded me this lady had been sick for over 20 years, and medicine had advanced a lot since. My aunt always knows what to say because she herself suffers from Chronic Thyroiditis (Hashimoto’s Disease) since she was 14; so she knows how to relate to someone in a bad medical situation.

I realized talking to my aunt, who didn’t have RA but understood living with a chronic illness, really did make me feel better about my future. After all, when she was diagnosed, they didn’t think she’d live to see another year. Most of the times she had supportive things to say, things to give me hope and make me laugh. I wasn’t the easiest of patients though, I was young and scared and some days all I wanted to do was sleep and cry. My aunt wouldn’t have it, she’d make me get out of bed and go grocery shopping (in a wheelchair) with her, or talk to her while she did her chores, anything to get me out of bed. I’d get so angry at her, at that point I thought she just didn’t understand my physical and emotional pain. I’ve since come to understand she understood perfectly well, and was trying to ease my emotional pain by getting my mind off of my own misery and showing me there’s more to life than being sick. I know it was unbelievably hard for her, because she loves me, to see me in pain and not give in to her own pain, but I gotta say what she did absolutely worked.

My mom suffers from Lupus, she was just diagnosed a few years ago, so I tried to be the support for her that my aunt was for me. Gave her pointers on how to make her life easier, reminded her of the importance of keeping up with medicines and appointments and staying positive. It wasn’t easy on her, because she now understood the physical pain I went through everyday; so she became depressed. I told her not to worry about me, at that time I was doing excellent, my RA was under control, I had a good job, my own appartment, and was going to college. Life was awesome! I told her, it’s not always a piece of cake, but you push through it, and it’ll always be worth it. She started doing better, but then she joined a Facebook group that was just the worst thing that could’ve happened to her. She’d call crying at least once a week that someone else in her group had died. I couldn’t understand why she just didn’t leave the group, I’d tell her “but you’re ok, why are you seeing cases that are worse off than you and thinking that’ll happen to you too?” With these cases, you don’t know the details, if they had good medical care, or kept up with their meds. There’s no need to make yourself anxious over something you don’t have all the details about. I strongly suggested she ditch that group and look for a more positive one.

In this life, I’ve encountered many people with my same condition. I’ve joined blogs, read magazines, joined Facebook groups and more; but I don’t always stick around. I’ve come to learn that negative and positive thinking is contagious. I try to spread the positive, but sometimes some people are so wrapped up in what they’ll never get to do or the pain they’re going through that their negativity overpowers your positivity. It is also important to be able to give and get tough love, sometimes you’re so wrapped up in what’s wrong, that no amount of positive talking will help. It is then, when you need people around you who won’t let you lay in bed everyday just crying yourself to sleep. It’s happened to me a few times, and I have had amazing people around me who wouldn’t leave me alone no matter how much I told them I wanted to just sleep. Talking to people who have gone through or are going through what you’re going through is EXTREMELY helpful, but you have to be cautious with whom you talk to, sometimes someone who isn’t going through the exact thing you’re going through might be just what you need. We have to look out for ourselves, our emotional and physical well-being, and if something or someone is bringing us down, we need to run away in the opposite direction as fast as we can.

The One With the Heart of Gold

Most who meet me for the first time often say, “You have rheumatoid arthritis? How is that possible? You look perfectly fine to me.” It could be my age or the smile I wear across my face that distracts people from my reality, but truth be told I am 30, I am 3 months pregnant and I do have Rheumatoid Arthritis.

Since we found out I was pregnant, my husband and I decided to move from South Texas to Albuquerque to start a new life for our family. My sister and her husband live in Albuquerque and invited us to move in until we got on our feet. (Yes, they’re pretty awesome people!) My husband and I took them up on their offer and within a week we had moved. Being pregnant with our first born, living in a new city and starting a new life all seemed too exciting, that was however, up until I realized I’d have to look for a new rheumatologist. Now I just keep thinking, “The quest, oh that goddamned quest!”

For most people changing doctors isn’t something to lose any sleep over, but for me, it can be. I’ve seen both sides of the coin and know better than to think all doctors are created equal. I don’t just mean how qualified they are as physicians, but how qualified they are as human beings. Anyone who has ever had a long-term disease knows exactly what I am talking about, but for those of you who don’t, I am referring to all the money-seeking, cold-hearted, inconsiderate doctors that you sometimes must go through before finally meeting the one, and by that I mean,The One With The Heart of Gold.

Back in Texas I was lucky enough to find “The One”, but finding him was everything but a walk in the park.

Although I was born with RA, my quest for diagnose and a physician first began when I was 14. When I was a child, I’d lay awake in the middle of the night punching my leg because the “new pain” made the horrible “dull pain” I felt in what I thought was my leg go away. I have now come to realize my leg pain was my knee in so much pain that it radiated all over my leg. Mom took me to several doctors, all of whom said: growing pains.

The pain would come and go, and stayed away for a few years until I was 14. It was so crazy because now it wasn’t just my legs, it was everything, but at different times. One day, I couldn’t get out of bed because the effort of getting up would cause unbearable pain on my shoulders. Next day, my knee was stuck in a bent position, and I couldn’t walk. One day my pain wasn’t so horrible, it was my hip, so I went to school. That pain persisted all week, the nurse finally told my mom to send me to the pediatrician or I couldn’t go back to school. They would pay for it, since we had no money; so we went to the doctor. The doctor asked if I was sexually active, to which I replied “ummm I’m only 14” and that really pissed her off, she kicked my mom out of the room and asked me again. I replied again that I wasn’t because I still thought of myself as a child (which I was, but I’ve come to learn that unfortunately, that has nothing to do with sex.) She was fuming and said that if I wouldn’t be honest with her, she couldn’t help, gave me ibuprofen and sent me packing.

By this time the random pains were getting worse and more frequent. Mom started to worry even more as she saw that I started deteriorating, so she took me to several doctors across the border which are the only doctors she could afford. Nobody knew what to say, “growing pains, depression, puberty, etc.” until finally one doctor said, “there’s definitely something wrong, I just don’t know what it is.” My mom’s sister got chronic thyroiditis (Hashimoto’s disease) when she was 14, so my mom and grandma started to panic that it was something like that. Grandma decided she couldn’t see me go through what her daughter had gone through as a child and talked to my mom about taking me to Mexico City to get treated in the same hospital as my aunt did. After all, they had helped her.

Once we got to Mexico, my aunt, the one with Chronic Thyroiditis, took us in her home and got to working. This woman is like a medical genius, she has no medical degree, but has been to enough doctors in her lifetime to know her way around doctors, hospitals and labs. Of course, in the process, she has made friends in the medical field as well. She kept taking me to one of her friends. A nice young doctor who I believe was genuinely trying to help, but had no idea what he was doing for the most part. He thought it could be RA, but my RA factor always came back negative, and I guess he’d never heard of someone having RA with a negative RA factor… they did so many different tests, I thought I’d run out of blood. NOTHING. Eventually, he decided I was depressed, by this time I couldn’t walk, eat, brush my hair, or even go to the restroom by myself. I was so angry. It made sense, my grandfather had passed away the year before and my dad two years before that, but my joints were swollen, red and in unbearable pain. All the doctor had to say about this was, “you’d be surprised of what your brain is capable of doing.” At this point I just bursted out crying because I knew I wasn’t depressed or crazy, and this man, like everyone before him was dismissing my pain. I must’ve been very heartbreaking in the way I cried, because after that, he told me he’d run tests one last time and if they came out negative I’d have to go see a psychologist or something, and if they were positive, then I’d be sent to a Rheumatologist. I think my body understood the ultimatum, because those labs came out with a positive RA factor. So off to a new doctor I went.

I was sent to an amazing research hospital in Mexico City, because most people in Mexico don’t have health insurance, and are too poor to afford medical care, this research hospital treats patients for close to no money at all with the understanding that they’re doing research on you. I didn’t care, as long as they fixed me, I was introduced to my new doctor. A Spanish lady with a heart of stone and a brilliant mind. Now that I think about it, that’s probably why she was in research, she didn’t have the patience for patients, much less a teenager. This lady got me through the worst part, out of a wheelchair and back in time for the next school year; but she broke my heart and my spirits in the meantime. She let me know quite early that I was doomed to a life in a wheelchair, she said she would try to keep me walking and agile for as long as she could but I would be bound to a wheelchair by the time I was 21. She wasn’t wrong, but I so didn’t want to hear this when I was 14.

I stayed with that doctor right up until I was 20; I thought I was doing great, except for the fact that I refused to do therapies and wear sensible shoes because I figured, I didn’t need everyday reminders of the fact that I’d be in a wheelchair by the time I was 21. By the time I turned 21, I was living on my own in Mexico City, had a good job, a boyfriend, and plans for the future. My life was pretty freaking awesome, until it wasn’t. My RA became surprisingly active all of a sudden, and in a matter of weeks, I couldn’t completely stretch out my legs, so walking was hard, painful and looked extremely awkward. After some heartbreak, and a lot of physical and emotional pain, I finally moved back to Texas where my mom found me my new rheumatologist.

I must admit, I was quite nervous about him, the last doctor I’d seen in the U.S. Had been a horrible lady, and I had an idea that American doctors would just want to take you for all you got because most people have insurance. I waited quite a while before I saw this doctor, by that time I was 21, and in fact bound to a wheelchair. After some X-Rays, he decided I needed total knee replacement surgery on both of my knees. I pretty much said he was crazy and that I didn’t want them cutting into me. There had to be something else we could do. He realized how young and scared and hurt I was, so he showed me my X-Rays next to the X-Rays of a healthy knee… I couldn’t even recognize my knees as knees, there was no more cartilage, and the bones had been rubbing against each other for so long, that they had taken completely different shapes. He said it was MY choice, but that if I didn’t have the surgery, I’d never walk again; and it had to be soon like in the next weeks because my muscles were starting to atrophy. He found me a great surgeon with a heart of gold who did an excellent job, and I’ve been walking around ever since. He earned my trust by putting himself in my position, and explaining things to me in a way I understood so we could keep moving forward. He always gives me all possible scenarios (not just the worst case scenarios), and is ok with me wanting to take control of my own health. After all, I’m the one who’s gonna have to live with the consequences of my decisions.

Today at 30, I know much more about my illness and well being than I did at 14. I know, for instance, what my physical strengths and limitations are. I know that I have little to no control over being sick or when and where I’m going to flare up and have a chronic episode, but most importantly I know that that I can chose which doctor I feel most comfortable with and that I don’t have to settle for a heartless one simply because they’re doctors and “doctors know best”. I know my body, I know my needs and limitations better than anyone, so despite what some may say, I too know what’s best for my body and what is best for my body doesn’t involve having a doctor who makes me feel like crap emotionally. I am not looking to make decisions based solely on how I feel, but I can make better decisions regarding my health when both my physician and I are involved whole heartedly in the decision making process.

I admit I am pretty scared about going through this exhausting process again, but if there is something this long and heart felt quest has taught me is that doctors with a heart of gold are not a myth. They are out there and they are healing more than just our health, they are healing our hopes and chances of a better life.