Mason’s Rheumatoid Arthritis story
Kim’s Rheumatoid Arthritis story
Brooke’s Rheumatoid Arthritis story
This is Mason’s Juvenile Rheumatoid Arthritis Story in the words of his mom, Jess
My son, Mason, is 16 months old. In March he suddenly stopped walking and had a very high fever. After two Emergency room visits, two pediatrician visits, and an orthopedic visit, I heard the same thing over and over, “It is just a virus. Your son is just sore.” I knew this was not true. He still was not walking and still had the high fever for over a week when his left knee became VERY swollen. I decided to take him to another emergency room. They admitted Mason and we were in the hospital for 6 days. While in the hospital, he received a very strong antibiotic in his IV. However, still, it was assumed that Mason simply had a virus that caused his left knee to accumulate fluid and caused the fever.
Two days after getting out of the hospital, Mason’s pediatrician decided to take some more blood to test for ANA. ANA can sometimes indicate an autoimmune disease, like arthritis. Mason tested positive and we were sent to a specialist. The rheumatoid specialist in our city does not live here. She travels from another state and is only in our city once a week! I had to beg and plead with the office staff to give me an appointment the following week and not make me wait an entire month! They gave me the appointment, but it was still a waiting game. The specialist wanted Mason off antibiotics for a full week to see if the medicine was actually helping with his knee. We made an appointment two weeks later.
Two weeks later Mason just started walking again the day before our appointment – it had been an entire month! The specialist believed that the antibiotics did NOT help his knee or help with him walking again; the antibiotics simply took the fever away. This is when she diagnosed Mason with Polyarticular Juvenile Rheumatoid Arthritis. At this point, I had done a little research and understood the fundamentals, but I not understand how this diagnosis would fully impact Mason’s life. Before this, I had no idea young children, my baby, could ever get arthritis. I believed arthritis was from years and years of wear and tear. I was sadly mistaken.
Mason is almost back to normal now. He is walking around and all over the place as he was before. However, he still is sore when he wakes up in the morning and after his nap. He has good days and bad days. I’ve noticed when it is cold, humid, or even windy out his knee seems to bother him more. He has to be under the specialist’s observation for six months to understand the full extent of his condition. I’m told the next attack could affect a different joint or several joints at once. It is the uncertainty that upsets me the most. I don’t know what will happen, how this will fully impact my baby. But, I do know that I will NOT allow his condition to consume my life because for now, he’s okay. That’s what matters.
This is Kim’s Rheumatoid Arthritis story in her own words.
In hindsight my Rheumatoid Arthritis probably started when I was about 17, a senior in High School. My hip started hurting so bad. My mom took me to the regular dr. and he said I probably had pulled a muscle! My mom and I were a little baffled, because the most strenuous thing I did at 17 was carry my beach chair from the car to the sand!? He gave me a cortisone shot and sent me on my way!
Skip ahead two years and I had started Cosmetology School! My feet started hurting so bad, like every bone in them was broken. We just chalked it up to me not being used to being on my feet all day. By the end of beauty school, my wrists were a little sore, again, just because I was using my hands so much!
Skip ahead about a two years later and had been working as a hairdresser I also had been involved in a very stressful relationship for quite a few years. I woke up one night with the most excruciating pain in my right shoulder. It was not like anything I had ever felt before! I just cried. I was about 21 at the time, still living at home with my parents and NEVER heard of RA, I was afraid I had cancer, because at the time I thought that was the very worst disease that a person could have and I imagined it was extremely painful.
I couldn’t do hair at all anymore. My mom was taking me to doctor after doctor. They would give me cortisone shots in my shoulder and send me on my way. This went on and on for about two years or so. I went to an Internal Medicine doctor and he ran all blood tests and EKG’s and I can’t even remember what else. His final diagnosis: psychosomatic. In other words, all in my head, nothing was wrong with me. Even though by this time I was in so much pain in my shoulders, that I couldn’t even lay down to sleep, I “slept” sitting up. My mom stayed home and helped bathe me, and a lot of the other things you really aren’t into your mom doing for you at 24 years old!! All my friends (or 90% of them) had all been fed up with my “sickness”. They were doing their own thing, not understanding this so called debilitating pain.
Finally, last ditch effort, back to Internal Medicine doctor. He had no clue what else to do with me and decided to send me to a rheumatologist! I met my RA dr. finally at 24 years old. He ran blood tests and x-rays and even though I tested negative for RA, he diagnosed me with RA saying all the signs were evident and that it was not abnormal to test negative for it and still have it.
I had been in bed for a couple months at this time. He put me on high doses of Motrin, and a very high dose of prednisone just to get it under control. The next weekend I got to go to a friend’s wedding and I even danced!!
I was afraid of the diagnosis, relieved I didn’t have cancer, kept asking my dr. if he was sure it was “normal” for someone so young to have this disease!! As there was no internet at that time, I went to the library!! The books I checked out were ancient!! But they gave me some basic information, because I really had no idea what this was.
My Dr. tried every medicine that came out on the market. He was very aggressive with my treatment. I went I believe weekly for gold shots. A derivative of actual gold! By this time I also had joint pain from my jaw to the tips of my toes, even places I didn’t even know you had joints hurt!
I met my husband when I was 26 years old. I was soooo scared to tell him about my RA. I think he was scared to death when I sat him down to tell him something “very important”! God only knows what he thought I was going to say. Well needless to say, he was ok with it; he even went and talked to his mom who was a Physician’s Assistant at the time.
I wasn’t able to become pregnant because of all the medicines I was on and I never got well enough to take a break and try. But luckily for me my husband came with a little 2 year old boy, Ren.
Well about 19 years and over 15 surgeries later – some ok, some horrific – more medicines than I can remember or probably even count, I’m still here! A little more tired, maybe a little more cynical, I somehow just keep going!! It is what we with RA do. And if we are lucky or blessed or whatever you call it, we do it with some very special people!! Maybe not a lot of them, but you know the saying, quality, not quantity!! My husband and my 81 year old mother are my biggest fans!! Always picking me back up when maybe I’m thinking I don’t want to get back up!! Also my 21 year old son, who always gave me purpose and made me move when that was the last thing I wanted to do! But as you moms know, I would walk through fire for my boy. Sometimes its feels just like that too.
Who knows what my life would have been like without RA? I’ll never know, I’ve had it longer than not!! I do know I hate Arthur, as we call it here, but it has made me who I am today! I think I’m one of the luckiest unlucky girls I know! That’s my story…Kim.
This is Brooke’s Rheumatoid Arthritis story in her own words.
I’m a full-time undergraduate college student again. I’m dual majoring in physical anthropology and English literature. At the moment, I am wavering between teaching high school English or being a librarian. I just got back from three months in Uganda where I was performing medical anthropological research. While there, I lived in a small village without electricity or running water. The nearest well-water that is partially purified is about half a mile away, making it a bit difficult to go everyday to get more. Therefore, my team and I bought a 20 gallon container that we used to get water from the well, taking turns every other day who has to carry it. The women of the village teach me how to hold the 20 gallons of water on my head instead of carry it half a mile in my arms. It is easier to walk since my gait isn’t hindered but the weight indirectly put on my shoulders from the container is…intense to say the least. There is a trading post about fifteen miles away from the village that has a market and electricity that we can pay to use so that we can charge our laptops and phones for work. While I’m not conducting the health needs assessment in the village, I teach English at the onsite remedial secondary school and try to learn how to ride a bicycle that requires someone to give me a step up just for me to get on the giant monster. When we go to the capital for supplies and to send out pieces of our research back to the U.S., we walk everywhere. Miles and miles of walking trying to enjoy civilization and luke warm shower water until we go back to the Bush.
Skip ahead. I’m back in Tennessee and back at school. My semester load is usually 6-7 classes as I’m dual majoring and still want to graduate in just 4 years. I make sure to get a single occupancy dorm room (even though those rooms are the farthest from central campus) and move all the heavy wood furniture around to a more pleasing alignment by myself and move my personal things in alone—up 8 flights of stairs since there are only two elevators and everyone moves in on the same day. Whenever a group of my friends get together at the on-campus diner, I drop what I am doing and run across campus to meet them. Also, every Tuesday and Wednesday nights I walk three miles to the apartment of some friends so that we can watch a new episode of House or Bones then walk back.
While I’m not on a dance team anymore like I was in high school, I still love to take classes. I usually register for one dance class each semester. Dance for 1 ½ hour straight then change into regular close in about 5 minutes before jogging a mile across campus to the English building since for some reason I always had a literature class after dance no matter how I tried to fix that.
I meet a great guy and realize that I can’t take dorm life anymore. So, I move into a small one bedroom apartment with my track star fiance, having him help me move the bigger pieces of furniture but holding my own with everything else. I work 25-28 hours a week as a projectionist at a local movie theater. The pay is complete crap, but I like getting to see free movies and watch them before the premiere in addition to hanging out with some of my close friends that work with me. My regular day has me walking back and forth over the span of one block at least 40 times each shift. I have to bend, stoop, and use my conveniently dainty fingers to thread the film through the projectors—not to mention all the fixing and working around broken parts at my old cinema. Then, there is “new movie day” when I have to breakdown the platter movies into individual reels and carry their cans down two flights of stairs—two cans at a time at about 30-35 pounds each. Then I have to carry the new movie cans of the same weight up the two flights of stairs. Once I build the new movies onto a platter I have to carry them to the projector they are going to be shown on as one huge lump. I like to do this by putting my arm through the empty center to partially hold the weight on my shoulder. I work out everyday by running laps in the projection booth before we open. I play DDR (Dance, Dance Revolution) on Expert when I have friends over to play with me. I cook huge homemade feasts for my friends and hardly ever have frozen food in the house. I also make the 3 hour drive to my parents by myself every two or three weeks then the 3 hour drive back.
I finally decide to take the librarian path and get a job as a circulation associate at an amazing upper class library. I stand on my feet all day and powerwalk all over the library to check on books for patrons who call on the phone or are waiting at the desk for me to get them something. I push carts of more than 100 pounds routinely and do so much bending, crawling, reaching, stooping, and squatting that I should be classified as someone at an aerobics class than at work. I volunteer free time to work with the young adult librarian to create my own YA summer program that I put together and created all by my lonesome. I also have a habit of tutoring at the on-campus Educational Support Program for a little extra spending money.
WHAM! Wait. What was that? Oh. It was some bad driving teenager in an SUV ramming into the back of my two-door Chevy Cavalier at about 45 mph while I was at a stand still waiting to turn because he couldn’t stop on a wet road. Neck braces. A hard one for two weeks then a soft one for two weeks. I still went to work two days later since I had just started at the library and really, really didn’t want to lose my dream job. Countless children looked at me weird and would ask their parents in hushed tones as they walked out the door what was wrong with my neck. After 12 weeks of physical therapy, I’m better. I’m still not as strong as I used to be but I feel almost like myself for a solid three months.
WHAM! What now? Oh yeah. It’s the night before my graduation. It’s pouring rain outside, and the wind is howling. I ache over every inch of my body. I think if I can just move to another position that it’ll go away. However, the second I move all of my joints give a singular, loud CRACK! Tears are now freely streaming down my face. I have graduation tomorrow. I need sleep. I had some left over pain medication from the wreck and only feel kind of bad about taking it before I go back to sleep. I wake up early the next morning because my college has the morning graduation time. I’m still loopy headed from the pain medication and can feel it is slowly stopping its anti-pain magic. I move my legs around to get out of bed. My eyes almost pop out of their sockets. Both of my knees are the size of extra large grapefruits. I didn’t know what to do, but the countdown to graduation had begun. I still had a few more pain pills left; therefore, I took a dose and started getting ready. I had to be there an hour and a half before the start time to get lined up. Once I was in my spot though, did I talk excitedly with my peers? No. My eyes were darting around looking for a place, any place, to sit down. There were no chairs in the back since they were all being used on the main floor. I ended up spending the wait time sitting in my graduation gown on the dirty floor as my legs trembled. Graduation went through without a real hitch though. I had planned on going to the spring Memphis in May concerts with my friends in celebration though. After several rum and cokes at a restaurant, I was able to actually walk to the park where the concerts were. I was able to stay for two songs before my right knee locked up, and I had to lean on my fiance to hobble and one-leg-hop back to the car. My former fiance and I went to Disney World for my graduation trip. I had to stop and take a break every 15 minutes. I would sit down and he would literally have to pick me up and put me back on my feet because I couldn’t do it myself. The only time I remember enjoying instead of being in unbearable pain was the night we spent at EPCOT and I got an alcoholic drink at every country in the World Showcase.
This segment of time it was more of a slowly building steam geyser than a WHAM. I was sick. All the time. I stopped all my volunteering for starters. I stopped doing extra things around work and started using a chair behind the counter like only the much older archival librarian did. No one knew what was wrong, but since my mom has mild RA, she had a hunch. I went to doctor after doctor. I spent the entire summer thinking this was just a bump in the road and it would pass for me to get back to normal as soon as the fall came around for me to start my Masters of Library Science program. Then, one random day I got a phone call. A school that was an hour drive away wanted me to teach English. While I had decided to take the library path, the appeal of having a salary and finally living on my own and getting married at last had a definite appeal. I kept on assuming my health problems would vanish soon and thought that since I had to drive 45 minutes to my own high school as a teen that the drive to my new job wouldn’t be a problem either.
I was able to get in to see a rheumatologist the week before I started teaching. My blood work was weird. No RF. No ANA. But the indicators of general inflammation like my platelet count and my white blood cell count were through the roof. She asked if steroids made it better. My general practitioner had given me a medrol dose pack after my fiasco Disney vacation, and it certainly helped. I told my rheumatologist this and she put me on 5mg daily. Now it was teaching time. Once I drove an hour to get there, I was still a first year teacher with no pre-set lesson plans or assignments or classroom structure. Also, the school required me to stay several hours after school every other week for a “new teacher” seminar. There was also the problem of my looks. I’m 24. Most people still think I am in high school. The students would whisper and point at me in the halls going, “THAT’S A TEACHER?!” My physique certainly didn’t help my disciplinary matters and not to mention the fact the school I was working at had 75% at-risk students and had failed the No Child Left Behind Standards since that program’s inception. On top of all that, I was tired. Ridiculously tired. One time I fell asleep while driving and hit the median—scratching the side of my car that is still there to this day. Another time I was able to make it to a gas station between my school and my house to get some caffeine in me, but I kept blacking out even while standing. Then, there was the pain. I had a mess of a room when I started my job. The last teacher apparently had thrown a fit and left textbooks everywhere, desks everywhere, and supplies in piles and boxes. I had to clean this up for my student and move my classroom around by myself to my classroom philosophy. I would come home most days, walk straight past my former fiance, and pass out on the bed while still fully clothed. I practically stopped eating dinner—which upset my former fiance because he didn’t like to fend for himself since he was so used to my cooking. That is when I started noticing things. The resentment. He was angry that I was sick. He never said it aloud, but he didn’t have to. Constantly, he would sigh and growl when I said I couldn’t go have fun without our friends. It got to the point where I was spending almost all my home time alone in the bedroom while he was out with friends or playing XBOX in the livingroom. One morning I woke up with knees like grapefruits and ankles like softballs. I knew that I couldn’t keep doing what I was doing. I quit teaching and got a part time job at a library just a few miles from my apartment. However, it was a library page job. All the shelving, pushing, lifting, carrying, and sorting. They are the “grunt workers” of the library. It took 5 months of me pushing through that type of work, taking breaks every hour or so in the bathroom to cry while I tried to get my pain under control. Still, I wasn’t my normal self. I was in pain and really not happy about that fact. My former fiance kept being upset at my sickness as though it was my fault. He kept saying that both of us were young and in love and we should be acting like it. At that moment I would try to explain to him that I didn’t feel young at all. He couldn’t get that concept into his head. The 5mg of prednisone really wasn’t helping, and I still had no official diagnosis. My rheumatologist told me to see a counselor for pain. That speech stabbed me through the heart. I wasn’t faking. I wasn’t crazy. I ordered a copy of my file with all my recent lab results and stormed out in tears. Since I wasn’t working anymore, I spent a lot of time at home searching for an answer, and my former fiance kept being angry at my mystery illness and expecting me to get better after a few seconds of hard concentration on it.
WHAM! One night I just broke into pieces. My former fiance and I were arguing again about me being sick and him being angry about it. I grabbed an overnight bag and drove to my parents’ house that night. I had also brought my file with me which my mom looked over when she wasn’t verbally consoling me. It turns out that my platelet count was 70,000. I could have had a stroke at any moment, but my rheumatologist had still told me that this was a mental thing. Upon seeing my lab work, my mom and my family nurse practitioner aunt knew I had a point. I set up a series of appointments with my local doctor whom I trusted completely in between leaving my engagement ring and taking my things back to my parents’ home. My doctor put me on a high dose of prednisone while we investigated some things. I felt like I could fly. I felt almost normal for the first time in ages. I took the money in my savings account that I was going to use to pay for a wedding and ran away to Montreal for a one week vacation before the medicine had time to wear off and I was bedridden again. A friend of mine had studied abroad there the semester before this and still had a few connections. I ended up meeting a few of them at a dinner party we set up. One of them was a very sweet, soft-spoken young man. Something magically clicked into place when I talked to him. However, I thought it would be best to drive him away quickly and talked about my RA-like mystery illness at the dinner. Everyone else shied away from me after that, treating me with empathy when you could tell they had no clue what to really do. Everyone except this young man. He asked about it with genuine concern and listened to my answers. Even though his legs were about as long as my body is tall, he slowed his gait enough to walk with me. I spent the rest of the summer talking to him online while trying to find another rheumatologist to give me a second opinion. After a fun little surgical removal of two swollen lymphnodes to check for cancer and an EMG (sticking a small electrified needle into my arms and legs to check for muscle deterioration) test that left me shaking, sweating, and trying not to cry in front of the doctor, my regular doctor put me back on prednisone for a while. The high of feeling almost normal put some crazy ideas in my head. In order to graduate with my Masters on time I needed to take a class somewhere other than my home university because they weren’t offering it until the next year. I found a course at Syracuse University that could transfer. After getting a referral to a rheumatologist there, I sat my parents down and told them I was leaving. I had to get away. It might even be considered as running away, but I was up north like I wanted to be and was closer to my very sweet and kind Quebecois. When I met with this rheumatologist, I sat him down and told him my entire story, practically in a single breath so that he would hear all of it before speaking. As soon as I finished he said that he was 95% sure it was seronegative RA, and then, he actually, physically examined me. He tested all my joints and all my swellings and all my range of movement. The other rheumatologist had never given me such a thorough exam. Having an official diagnosis was very helpful too.
Now, I’m on the “treatment rollercoaster.” I’ve just been through and now tossed aside my first biologic (Enbrel) and am about to start Humira this week. It has been a bad few weeks while I wait for Enbrel to get out of my system while trying to not have to take a high dose of steroids. Either way, I got into Queen’s University in Kingston, ON to finish my Masters and get cheaper medication this fall. Being close to a guy who never resents or gets upset with my sickness, who surprisingly wants to help me when I’m having bad days or a troublesome chore, who just wants me to get better for me to get better instead of for me to start doing things again is a very, very nice perk as well. Between him and my family, I actually feel like I can do this. I don’t have to necessarily throw out all my dreams and plans just because I can barely walk to the kitchen without assistance some days. Either way, this “speed bump” has allowed me to get involved in writing again which was a passion of mine from the moment I learned to read. Freelance writing at home is really all I can do regularly while I try to find a drug that lets me resemble a human being. Yet, it is nice to be renewed in that passion—as long as my fingers and wrists are swollen that day!