Started out as JRA, still going as RA
When I was about a year and a half in 1981, my left knee started to swell and stiffen.
Since my family and I lived in a third world country back then, the doctors did not know what was the matter with my knee. I was given painkillers for a few weeks but my left knee was still swollen and was stiffer.
One doctor actually tried to straighten my leg by having nurses pull at my leg to try to straighten it. Imagine being about two years old and in pain and then fainting from the pain of having people pull at your swollen stiff knee.
Unexpected Juvenile Rheumatoid Arthritis diagnosis
A few months went by and a visiting pediatrician from the UK visited my third world home country. The pediatrician spoke with my parents and suspected I had Lyme disease but he wasn't so sure. He recommended that my parents take me abroad where more testing can be done to diagnose me properly.
By the time we traveled for my medical issues the year was 1984. I was lucky to have an uncle in Switzerland at that time, so that's where we went. My parents took me to a pediatrician who immediately recognized my diagnosis as Juvenile Rheumatoid Arthritis.
Treating JRA (also known as JIA)
I was put on anti-inflammatory medication that made my face swell up like a balloon. I was also given a detachable cast for some reason to wear on my affected knee.
I wore that hideous cast at night time in hopes of waking up in the morning to find my leg would have straightened, it didn't. I was also doing physical therapy to help strengthen the leg and knee. A few months following my diagnosis, my affected leg grew longer than the other leg which caused leg discrepancies in height. I was given shoes with an attached extra heel to level out both legs.
Life went on for a few years and I was still on medication. By the time I was 7 years old in 1987, my father got transferred to New York City, NY. The first thing my parents did was take me to a pediatrician and pediatric rheumatologist at Hospital for Special Surgery in NYC.
Meeting my rheumatologist
That's when I met Dr. Lehman who became my rheumatologist for the next 10 years. I was put on more medication and physical therapy, but still my left knee was severely swollen and stiff to the point I couldn't walk.
Of course, this affected my school life and activities. I was very shy and self-conscious about being physically disabled, and we all know how understanding and compassionate school children are.
Add to that I was an English as a second language learner, so I was guaranteed a place at the popular kids' table!
When I reached the age of 12, I felt much better. I was basically off medication and was doing well without any symptoms. I thought I was done and outgrew JRA.
However, one morning in 1994 I woke to have severe pains in my left knee and left ankle! I was in denial at first and did not want to tell my parents.
By the end of the day, I was unable to put any weight on my left ankle and had to tell my parents. I went back to my pediatric rheumatologist and he confirmed my worst fear at that time. The RA has come back with a vengeance.
My left knee, left ankle, and left elbow were now all inflamed. I was back on anti-inflammatory medication which makes you swell up and have a puffy face. Of course, not to mention the increased appetite which led to weight gain, as if being a teenager during the grunge look wasn't enough.
Two years go by and I was feeling better. One day in 1997 I felt tightness in my right knee which turned out to be swollen tendons since I was walking with a limp because of my bad left knee. I was given some medication. Years go by and my RA was under control.
Right knee problems
Then one day in 2002 my right knee became so swollen and painful. By then we had left NYC and went back home to a third world in North Africa. Luckily for me, my uncle was an internal medicine doctor who started to treat me for the next 6 years.
Apparently, there was fluid in my right knee which caused the swelling and pain. The doctor decided to do a joint aspiration (suck fluid from the joint) which helped a lot.
I was mostly pain-free for a few more months. By the end of 2002, all infected joints (left knee, left ankle, left elbow, and right knee) were swollen and painful.
I was put on prednisone and methotrexate which helped manage my RA for the next six years.
RA problems return in New York
In 2008, I received a scholarship for a graduate degree, so I returned to NYC to do an MA at Columbia University.
After the excitement of being back in the Big Apple settled down, flare-ups started coming back with even a stronger vengeance. I went to a rheumatologist and discussed my RA history.
The doctor was surprised I was put on prednisone for such a long time. I continued taking methotrexate in addition to strong pain killers and anti-inflammatory. The medication was not enough. That's when my rheumatologist started me on biologics.
A journey into biologics for RA
I had my first Enbrel injection in January 2009 which strongly suppressed my immune system and made me sick for a few days after receiving the first injection. I continued taking Enbrel, methotrexate, pain killers and anti-inflammatories for a few years, in addition to physical therapy.
However, my left knee (which has been infected since 1981) was severely damaged. The phrase ''knee replacement'' was mentioned a few times in 2010.
Due to the severe pain I was still feeling despite all this medication, I was put on Tramadol 200 extended-release pills and started getting cortisone injections in my left knee.
JRA impacts career, too
In 2011, I graduated and started working in education which meant standing for long periods of time which caused a fracture of the second metatarsal of my right foot. I went to a podiatrist who comforted me by saying the foot would heal itself. It didn't.
I had to wear an athletic medical boot on my right foot for six months to no avail. The fracture was not healing by itself at all, that's when I had to have surgery on the foot. I had ''repair of non-union of the second metatarsal'' surgery on my right foot (which included 4 pins still there ) in December 2011.
Knee replacement and treatment
By the beginning of 2013, my RA was very active and I was walking with a cane to support my damaged left knee. My rheumatologist strongly suggested knee replacement surgery for both knees since both were damaged because of RA.
On December 18, 2013 at the age of 33 I had bilateral knee replacement surgery at the Hospital for Special Surgery and stayed in inpatient therapy for 3 weeks. It took about 6 months for me to function properly with my new knees.
I was still in physical therapy a year after surgery as the muscles around the knees were atrophied due to years of improper use and mobility. I wasn't feeling pain in my knees anymore, but RA would not let me go.
Orencia infusions were extremely helpful and I was able to manage my RA for a few years pain-free.
The RA journey continues
As of today at the age of 40, I still have slight stiffness in both knee areas and a stiff locked left elbow. I also usually experience some pain in my neck, hips, and back in addition to swollen thyroid.
Rheumatoid arthritis is mostly just a disease or illness for many, but for me, it's a life long companion.
Do you feel guilty when you need to rest?