I have always had a bit of bad luck with my body. Up until 2015 my health was great except for my back. Since 1998 I have lived with a “terrible back” and had to be very careful as to “not throw it out” and end up in bed, immobile for weeks at a time. Then in 2013 my shoulders started burning, my right arm would stop working and my hands would burn with pain at the end of the day. I just thought it was because I was so hardworking and I had pushed my body it’s limits. I made a ton of excuses until 2014 and after my daughter Molly was born I was in daily agony. My hips burned as if my bones were on fire at their core, my feet felt like I was walking on gravel without shoes all day every day, my hands were so swollen I couldn’t bend my fingers and it hurt to hold my cellphone let alone a new born baby. Then one day I couldn’t lift my arms at all, both of them, no matter what my brain told them to do they were motionless. The doctors confirmed in May of 2015 I had Severe Rheumatoid Arthritis and later in 2016 I was further diagnosed with Ankylosing Spondylitis which explained my constant struggles with my back and hips and pelvis. When I received a second diagnosis I tried to listen to the doctor but all I kept thinking was none of this felt real. The pain felt real, but none of these illness felt possible. I had been making excuses and lived in denial for so long and Ankylosing Spondylitis was so hard to say, like a spell out of Harry Potter.
These diseases have radically changed mine and my family’s lives.
Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS) are autoimmune diseases.
RA is not the same as osteoarthritis. According to the Mayo Clinic “Rheumatoid arthritis occurs when your immune system mistakenly attacks the lining of your joints, causing a painful swelling that can eventually result in joint deformity.”
Ankylosing Spondylitis is an inflammatory disease that among other things cause the bones in my spine, hip and pelvis to fuse.
I would describe my own personal experience (because RA and AS are very individualized affecting those living with these diseases differently and at different intensities) like living with the worst flu of your life every single day except with intense, searing pain and radically less mobility.
In many ways I am very lucky. I live in a country with socialized heath care, I have an extremely supportive and understanding group of family and friends and I work from home. These blessing make living with chronic pain and crippling fatigue manageable. I am well cared for by my doctors and we are doing our best to achieve my best wellness in a variety of ways.
In Summer of 2016 I was able to begin a new drug treatment that has greatly improved my mobility and elevates my high pain levels for most of the day. My Family, doctors and I are hopeful these improvements will stabilize.
This journey has only just begun, but because of the nature of this blog my illness has been documented from the very beginning and our conversations are in a specific archive labeled RA. You can find the archive on the right hand side of my site, the last orange circle.
For more information on this disease and living your best life with chronic pain and illness visit the links below. If you have questions about your own wellness please direct them to your family doctor.
Above is a film I completely identify with by the National Rheumatoid Arthritis Society – UK.
RA GUY provides positive support for those living with RA and their families:
A great way of explaining what it is like to live with autoimmune diseases:
Positively Rheumatoid are two mothers navigating their RA journeys with truth and wit.
Jenni, the Editrix of Chronic set out in 2005 to create a haven where anyone living with a chronic illness can achieve their own personal AWAP (as well as possible). Her YouTube videos and blog coach, support and encourage a Chronic Babe to embrace their best wellness.
Thank you for reading and supporting my conversations with Hank (and Molly and Pai).
Wishing you all as well as possible.