I have always had a bit of bad luck with my body and up until 2015 my health was great except for my back.
Since 1998 I have lived with a “back injury of unknown origion” and had to be very careful as to “not throw it out” and end up in bed, immobile for more than a week at a time. Then in 2013 my shoulders started burning, my right arm would stop working due to what was then misdiagnosed as severe tendentious and my hands would burn with pain and were too stiff to use 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 when 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 because it felt too heavy to lift. If my cell phone felt too heavy imagine what if felt like to hold my new born baby.
Then when Molly was five months old and Hank was seven I was in tremendous, full body pain, I couldn’t lift my arms at all, both of them, no matter what my brain told them to do they were motionless and I was petrified.
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 life long struggles with my back and my burning pain 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 diseases felt possible. I had made excuses and lived in denial for so long and Ankylosing Spondylitis was difficult to say, like a spell out of Harry Potter.
These diseases have radically changed my life and the life of my closest friends and family.
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 causes the bones in my spine, hips 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.
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 these diseases and living your best life with chronic pain and illness take a moment to view the films and visit the links below.
If you have questions about your own wellness please direct them to your primary care doctor.
UK Journalist Juliette Wills has lived with inflammatory spinal arthritis for 18 years. Watch her story of how the disease has impacted her and her family.
To find out how arthritis affects UK residents, please visit: arthritisresearchuk.org/jointproblem
Above is a film I completely identify with by the National Rheumatoid Arthritis Society – UK.
Charis Hill, the subject of the important video above, documents her first-person journey living, advocating and trailblazing a life with Ankylosing Spondylitis on her blog, BeingCharis.
It would be short sided to call the next blogger/vloggers, Simon and Martina of Eat Your Kimchi/Eat Your Sushi fame, “Chronic Pain/Illness Bloggers/Vloggers” alone as they have built a career educating the world about Korean and Japanese food and culture, but their work, honesty and platform have illustrated perfectly what living your best life in spite of pain and advancing illness looks like. Recently Martina, who lives with EDS (Ehlers-Danlos Syndromes), uses the #buildaladder to help the world easily search and document individual coping strategies to deal and get through a bad day with debilitating mental and physical illness.
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 Babe 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.
Once again, thank you for reading and supporting Conversations with Hank (and Molly and Pai).
Wishing you all as well as possible.