My Diagnosis

I took a survey last week about Rheumatoid Arthritis in America.  Some of the questions were about how long you had symptoms before getting a diagnosis, and some about how many doctors and doctors' appointments did you have before getting a diagnosis.  I was usually on the higher end of those questions.  Did some people get a diagnosis or even just some questions answered after only one visit to one doctor?  Lucky.

After graduating from high school, my next step was college.  I mentioned before that I was accepted to the local university and I was set to begin classes in the fall semester.  I have a summer birthday, and since I graduated a year early, I was 16 at the time of graduation then turned 17 that summer.  I lived at home with my parents that first semester since I wasn’t old enough to sign a contract to rent an apartment.  With the exception of me driving my parents crazy because they wouldn’t let me move out, that semester was fairly un-eventful.  I made the dean’s list, decided on a Criminal Justice major after taking a CJ elective that was super fun, and met some cool people in my classes.

Fast forward through Christmas break, and my parents allowed me to move into an apartment near the university!  One day before school started!  Thanks guys, as if the first day of classes isn’t stressful enough.  The first semester seemed to go by without much difficulty, so I thought I would step it up and take harder classes and more of them. 

A few weeks into the semester, I started getting some intense pain in my feet.  I was working construction part time with my brother who is an electrician.  I was required to wear boots because of safety issues on construction sites, and I thought they were the cause of my problems.  I splurged on some new boots which helped, but not enough.  The only relief I was getting was wearing two-inch foam slippers, and even then it wasn’t total relief.  I still thought it was the boots.

About two weeks after I started having foot pain, my shoulder began aching terribly.  I remember noticing it at work.  I mostly just held my arm close to my body and it alleviated the pain a bit.  Later that day, I was walking outside when it was snowing and I slipped on some ice.  I didn’t fall to the ground, but the jolting of my arms’ reflexes as they tried to catch me hurt so badly I had to go straight home.  It hurt so bad it woke me up in the middle of the night.  I couldn’t lift my arm, I couldn’t rotate my torso, I couldn’t bend my neck, or do much of anything or else my shoulder would hurt even more  I called my sister who lived nearby and asked her to take me to the emergency room.  I didn’t know what else to do.  I figured it wasn’t life threatening, but the pain was too severe for me to handle.  They took x-rays which showed nothing conclusive.  They said it could be a condition that many people who have had dislocated shoulders experience where the tendons get stretched and elongated and then get pinched in the shoulder joint.  But I had never dislocated my shoulder…Whatever the cause of the pain, it was bad.  They just gave me some pain killers and sent me home.  That shoulder pain continued for a few days.

Then my knees started swelling and hurting.  I would wake up in the morning with large, swollen knees, aching feet, a stiff neck, and no idea why.  I started missing work and school because I hurt too much to walk.  I dropped a couple of classes to try to keep things manageable, and because I was just a part time construction worker, they didn’t really miss me. 

I was constantly cold, but my knees felt hot to the touch.  I was taking long hot baths that seemed to help, but only temporarily, and I couldn’t do them for long because I was having trouble getting out.  There was one day that I got stuck in the bathtub.  My legs were weak so I couldn’t just stand up, my knees were swollen so I couldn’t bend them, my hips hurt so I couldn’t roll over, my knees hurt so I couldn’t kneel up.  My roommates were all gone to class so I couldn’t yell for help.  I had a telephone in the bathroom with me and I was seconds away from calling my brother to come help me get out of the tub before I realized that the front door was probably locked.  After about 20 minutes and with a great deal of pain and struggling, I finally got out of the tub.  Taking a bath was no longer an option for relief.

The next step I took was an appointment with my family doctor.  You’re probably wondering why I didn’t do that in the first place.  As I was growing up, my parents rarely took me to the doctor.  Because my dad was self-employed, he had to pay for our family’s health insurance.  There was a really high deductible, and unless it was really bad, we just didn’t go because it was expensive.  I was taught (in a way) to just push through things because they will get better with time, so I thought I could just push through this and I would feel better soon.  It wasn’t happening. 

I explained what was going on to the doctor and the first thing she did was order some bloodwork.  I think she said something about arthritis, but I forgot about it because I didn’t connect bloodwork and arthritis.  I didn’t know they could tell anything like that from blood.  The tests came back negative for whatever it was she ordered.  She didn’t see whatever it was she was looking for.  She prescribed a few days of prednisone for me and suggested I see another doctor to see if he could tell something.

That first day after taking prednisone was like I had died and gone to heaven!  I wasn’t in pain!!  I could go to work!!!  I could go to school!!!!  The swelling in my knees went way down!!!!!  I was happy!!!!!!  Until I saw the other doctor. 

I explained to him what was going on, that I was hurting, the prednisone was amazing, the original doctor sent a letter about what she observed…He decided that he couldn’t make any conclusions while I was on prednisone.  And he wasn’t going to give me more…I was scared.  I was scared of being in pain again.  I was scared of what the prednisone was going to do to me (I wasn’t familiar with the drug).  I was scared that they weren’t going to figure out what was going on.

I went home, took my last couple of doses of prednisone, and prayed that the pain wouldn’t come back.  Of course, it did come back.  With a vengeance. 

I returned to the doctor and he was able to see my pain without prednisone.  My dad drove me, partly to be at the appointment with me, and partly because I didn’t feel like I could drive.  I hurt so badly that I couldn’t even get up on the exam table.  The doctor said he felt it was Juvenile Rheumatoid Arthritis.  He prescribed some more prednisone for me and recommended I see a Rheumatologist.  The office assistant helped me set up an appointment.  The Rheumatologists office she called fortunately had an opening for the next day.  Off I went to the Rheumatologist.  My mom drove me 200 miles to the doctor that would identify the dragon setting fire to my joints.

I had this image of going in to the doctor’s office and he would look at me and proclaim that I was an unusual patient and this was very rare and he had never seen anything this bad at all.  Why wouldn’t I imagine that?  This was unusual to me.  I had never hurt as badly as I had in the past several weeks.  Surely my condition was completely unique.  Boy was I wrong.  He talked to me casually, did a physical exam, bent my knees, looked at my hands and feet, and then declared that it was Rheumatoid Arthritis (he didn’t diagnose me with JRA).  He prescribed some medications for me and said he wanted to see me in three months.

One way?  This represents how my emotions were while I was going through all of this.

Rheumatoid Arthritis?  Me?  Why?  How?  When will it end?  What’s going to happen?     

I was shocked.  I was scared.  I was puzzled.

I was 17.  

Riley