I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) when I was 8 years old and have had, like most people with the disease, good periods and bad periods.
In 2012 into early 2013, I would say I had one of my worst bouts of it that I can remember.The rheumatoid arthritis had pretty much crippled me not only with tremendous pain in my neck and my hands, but also with bone crippling fatigue. I was sleeping upwards of 18 hours a day some days, and getting out of bed to do anything was pretty rough painwise.
Before we got it under control with medication and physical therapy, I was walking with a cane and a walker as it spread to my knees and ankles as well.I had to stop working and seek out a way to afford treatment without any health care, which is a post for another time for sure.
I kept a video journal for a brief time during this period. I didn’t post many of them and didn’t do it for very long but I thought that this may be a good way to start this blog by sharing them with people.
This first one is at the beginning of 2013, when the doctor had decided that the best method of treatment for me was to go on Biologics, more specifically Remicade and Methotrexate, which you will hear my opinion on if you watch the video.
In the end, I look back at this period and it feels so much longer than a year ago. The decision to start Remicade and Methotrexate was a terrifying one, but in the end the best decision I ever made. It was part of the process that got me back to my life and living a life I couldnt have even imagined when I started this journey in January 2013
There are a couple more I will share here as time goes on from this period as well. They are extremely hard for me to watch. When I look at my face I am 25 lbs heavier than I am now and I can just see the immense pain and frustration in my face. In fact I could only watch about the first minute of this video without welling up in tears. I am so blessed to be living such a different life than she was this time last year.
Its not that its all sunshine and roses – far from it (as I sit here writing with this with a brace on my left wrist and an icepack on my neck and shoulders…) but I am so much better off than I was when I shot this video! I think this is worth sharing because it shows how this disease can both take things from you and give it back at its own will. Its a fickle beast we all live with when living with an autoimmune disorder, that’s for sure