The Beginning Years
I was diagnosed with JRA (Jr. Rheumatoid Arthritis) when I was 2 years old. 90% of my joints were being attacked and the doctors told my mom that I would most likely be in a wheelchair by age 12 because I would have 0 joints left. I had such an aggressive strand of JRA that I was immediately put on steroids and horrible biologics. I remember that I had to get my blood work done every 3 months to check my inflammation levels. To put it in perspective when they measure your Sed Rate (inflammation factors), as a girl/woman normal range is 0-29. I was measuring close to 100 most days.
I remember coming home from school or waking up at night to intense pain in my joints. The only thing that would help was my mom had to literally dig her fingers into the sockets of my joints to release the pain.
I was made fun of by the way I ran, I was always told I had a abnormal profile, and to top it off I was very chubby because of the meds. I just was never confident in my skin.
I was raised in a christian household and we believe in the power or prayer and healing. When I was 8 we had a healing conference come to our church. Of course we went #1 because my mom practically lived at church and #2 because we knew the only answer to stop the pain was God. There was an alter call and my little 8 year old self walked up front to get prayed over. When I was finished I remember telling my mom that I felt really weird. Like I had pins and needles all over my body. And we all know how annoying those are. Can you imagine it all over? Well of course this concerned my mom so we went into the Dr. that next week. Like routine we got my blood work and waited. To our surprise they called and said we needed to come back in because there was a mix up. There really wasn’t a mix up they just needed a second draw to make sure what they were seeing wasn’t a flook. Well it wasn’t, my Sed Rate went from the 90s all the way down to 18! We were all floored! My Dr. of course was skeptical but we knew our prayers were answered. I had to stay on super harsh meds till I was 14years old.
The Later Years
The funny thing about RA is that it hides. Do I believe that I was healed? Yes! But I believe that the deterioration caused issues as I grew. Which weakened my joint processes and bone development. I feel that God had a plan for hiding it when he did because I was still a growing child. But I still had it the strongest for 6 years of my life, so I had lots of deterioration. From age 8-18 I had 3 surgery’s on my feet. 1 on my right and 2 on my left to correct my toes so I could walk better. I cant tell you how many times I had to get my knees drained of fluid or steroid shots in my knees or elbows. I stayed on meds till I was about 15 because truly I was tired of taking 6 pills a day.
Jumping forward when I was 21 I had a massive flare up. I really had no idea where it came from. That is when we realized that RA can become dormant, just like it does when you are pregnant. I’m guessing my stress from college set it off, but who knows. So back to the Dr. I went again. They put me on a biologic called Embrel. It was the worst medicine in the whole world, for me. I had to inject myself once a week with a pen. I was constantly sick and had sores all over my body. I also truly believe that we miscarried because of that medicine. So after I had Tatum, my eldest, I said ENOUGH and I wanted to take back my life. I knew that there where more natural ways to help my inflammation.
Learning to Live
About 6 years ago…Since the internet has become available I turned to the trusty internet and did research for 3 months to make sure I wanted to take the plunge and control my inflammation more naturally. I’m not against meds, there is a time and a place for it. But since I was on so many for so long, I wanted to try it a different way now. I told my Dr. that I wanted to try changing my eating for 4 months to see if there was any difference. My Dr. at the time was so against it. I’m not saying he is a bad dr, but I wanted to advocate for myself. So I asked for another Dr. who would let me.
Guess what? Was I correct! I followed the Paleo diet over a year and I lost so much weight and I felt amazing. my numbers went way down. I had no flares. I was feeling amazing! Life happened and got off course and its just taking me a long time to get back on it.
This leads me to now, 5 years later…Now I am on a biologic call xejanz and I love that its not harsh but keeps my flare ups down. I really try to avoid gluten as that’s a huge trigger for me. My left wrist had become such a issue, it was the root cause of all my pain. That is why we decided to have surgery and fuse it, to illuminate the deterioration that the RA caused.
So here I am pain free in my left hand but struggling with my mobility of my fingers after the surgery. Its trusting in the process. I know I will eventually have surgery on my right. I still try to control my flare ups with eating. It’s a challenge when you add kids, homeschool, and life in the mix.
So if you are reading this, you have a friend, you have someone who understands. I am a wealth of knowledge of what works and doesn’t. Do I still struggle? Yes! But I know that there are other factors now. Autoimmune issues have become so evident recently and is so sad to see so many young people being effected by these diseases.
So take heart, take your life back, and advocate for yourself.