I have been thinking about this for a while, and I have finally decided that I wanted to write about my life with Juvenile Rhuemetoid Arthritis. If this is not something you are interested in, then you can skip this post.
I had always thought of myself as a healthy little kid. I didn't have vivid memories of earlier childhood, but apparently when I was around 4-5 years old, my parents said I got really sick. They had to give me my own room so that I could get lots of extra sleep. They did't know what was wrong with me and neither did the pediatrician. My parents did tell me that I had this large mushy bump on my wrist and the doctor whacked it with a heavy book, and then it went away. I also was subjected to strange diets like no butter or chocolate or things like that.
When I was about eight years old, I was standing at the bus stop with all of my schoolmates waiting like everyone else. I didn't have anything particular on my mind. I remember that it was an overcast day, but the weather was fair and rather pleasant. I was wearing pink jelly shoes. Don't you remember those? They are now back in style. A boy that I didn't really know, yelled out in disgust as he was pointing at my feet, "Ew, what happened to your feet?" I had absolutely no idea what he was talking about. I looked down at my feet and there were identical mushy bumps on the tops of the outsides of my feet. Underneath my ankle bones on the insides of my feet were two very pointy bumps. I was embarassed. I had no idea there was anything wrong with my feet. I had never noticed it before. So, from that point on, I stopped wearing sandals. The bumps never went away. I didn't know what it was, but it didn't hurt, so there was really no point in worrying about it, I thought.
Fast forward 3-4 years... I really started to get involved in sports. I loved to play basketball and I planned on trying out for my middle school team. In North Carolina, you are required to get a physical before you can play organized sports. My Dad took my to the doctor and they did the whole examination. Finally, the exam was over and the doctor non-chalantly asked me if I had any questions about anything. That is when I asked her about my feet...
After 2 other doctors had looked at my feet, they decided it would be a good idea to extract the fluid out of one of the bumps with an exceptionally long needle. It was a horrifying experience, but at least the bump was gone, right? {the bump came back and then some in about 3 weeks, or so} They also took my blood.
***Note to all readers: never let a doctor extract fluid out of your joints, no matter what they say!!!After a few weeks had passed, my Dad took me to the grocery store and as we were walking around, he informed me that he thought I had arthritis. Huh? Arthritis? Are you kidding me? Isn't that a disease for old people? I really didn't have a clue what to think but I was scared.
The pediatrician referred me to
Dr. Deborah Kredich (she was an amazing doctor) at Duke University. She was actually a specialist in pediatric Rheumatology. This is a highly specialized field and the Lord truly blessed me that I lived in the right place at the right time so that I could get a correct diagnosis from a lady who knew what she was talking about. The first appointment must have taken about 8 hours. It was draining. Dr. Kredich came in and examined me and made the diagnosis:
Polyarticular Juvenile Rhuemetoid Arthritis. She prescribed 10 esoteric aspirins per day and leg braces. Yes, I had to take that many aspirins every day, even though I don't think I ever consistently took all of them. The aspirin made my ears ring, but I was always good at taking them on a full stomach, so I never had any type of stomach problems. The leg braces were a whole other story.
Once I finished my exam with Dr. Kredich, I went with a tech to get leg braces made. They made them there on the spot. I had to wear leg braces for about a year because there was so much fluid on my legs, they were afraid that it would cause my legs to grow crooked, so at night while I was sleeping I wore the braces to keep my legs straight. They were made of this plastic that had large holes in it. They put red velcro straps in four places along the length of the leg. When I would wake up in the morning, my knees would be swollen even more and it took a lot of effort to get my leg moving again. It was very painful.
After a while, the swelling went away and I had fairly good movement in my joints. I had to go to the doctor all the time. They wanted to check my aspirin levels to make sure they were never too high. It was an unusual test and every single time I went to the lab, the phlebotomist had to get the big book out to look it up. It really became comical after a while. And every time you told them what it was, they never believed you.
I would always get anxious about getting my blood drawn. It was not because it hurt. It was because I was constantly forgetting to take my medication, and I was afraid I would get into trouble. After a while, Dr. Kredich added Naproxen (which was a prescription at the time) to my drug regimen.
I stayed very active all through middle school and high school. It was part of my treatment. I had to stay active to keep the muscles around my joints strong. Inactivity was a big no-no. When you have arthritis, you don't want to move. You don't want to do anything, but you have to force yourself to do things you don't want to do. To this day, I still have a natural aversion to picking things up off the ground, sitting on the ground, and the ground in general. It requires way too much bending. Yet, these are things that I really cannot avoid, no matter how much I try. I ran track, cross-country, played basketball and softball. At one point, I was pretty good.
My senior year, things took a turn for the worse. Dr Kredich was not there for my appointment and a new doctor decided to change all of my medication. It was less pills, but they were potent. After a few months, I started to get acid washing, churning, broiling headaches every day at about 2 o'clock. I also got this acid build up in my left calf. It was horrible. If you touched it, it would cause excruciating pain. And on top of all of these side effects, my knees were huge! She really messed me up. I had to ace-bandage my leg for months. This doctor also thought it would be a good idea to inject my knees to get rid of the swelling. I was absolutely terrified!
Yet, I was obedient, so my sister took me to the appointment. Remember,
Duke University is a learning hospital and I had two perfectly good knee specimens for residents to practice their injection procedure. I already am very protective of my knees. If they get poked in anyway, it hurts. Little children are the worst culprits at hurting my knees, by poking and prodding me. I am usually pretty good at protecting myself. But here I was at Duke, completely vulnerable and scared to death...and for good reason. They just used a topical analgesic, no little needle before the big needle. Each knee took about 5 minutes each while the doctor talked to the students as they slowly tortured me, with
NO PAIN MEDICATION!!!! It is like getting your teeth pulled without the novocaine.
When they finished, I sat up and then fainted off the bed, smack onto the floor. I was out cold.
I actually did this procedure again at a regular doctor's office about a year later, and he used the little needle first, and it hardly hurt at all. It really ticked me off to think about what I had gone through before. I guess that was my one and only contribution to science, thank you very much.
My first job was at a retirement home as a waitress. I had never been on my feet that long, just standing around. My knees got so swollen that I could barely bend them, maybe 30 degrees or so. A lady dropped her fork on the ground and asked me to pick it up and that was a very painful experience for me. Even now, I don't like standing around for long periods of time for that reason. If I am at a museum, or a clothing store, or wherever, I always try to keep moving or I can feel my knees swelling up. I have explained this to my husband, so that he can understand why I am always 3 steps ahead of him.
Since I have been married, I decided not to take any medication at all. Occasionally I will take an anti-inflammatory as needed. However, I have come to realize that Rheumatologists in general do not know very much about this disease. I have been fortunate in that I don't have a lot of pain in the joints that are infected (which is just about every joint in my body). I just have restricted movement. Doctors will just start throwing pills at you, and I don't find that they help anymore than eating right and exercising (yoga is especially effective when I work up the courage to go). Also, in the experiences that I have had visiting doctors in adulthood, I feel like a victim. I feel weak and helpless. I know that this is not true. I am strong and can do many things. I just have limitations. I don't like feeling like a victim...ever.
The times when I have felt the worst as an adult have a direct correlation to the things that I eat and how much exercise I get. There was a time when I could make a subtle movement and have a hip joint go out of the socket. I was in really bad shape. It is a very painful. So, you just keep moving it around until it pops back into place. You can actually hear it pop. Its great! This made me realize that my joints will go out of their sockets because the muscles and tendons around them are weak. When I do strength training, this type of thing happens very infrequently.
I ususally don't think about having arthritis, but these past few weeks my knees have had a lot of fluid on them. It keeps me humble, but it doesn't slow me down too much. I also get the feeling that I live with a lot more pain than I realize, but I guess you can get used to anything. Humans are very adaptable.
