This is a few months before I was diagnosed in 2015. It's day five of a very long seven day race in the Pyrenees. I thought long and hard about whether or not I should share this but the long 18 months it took to finally find relief was made immeasurably better after reading stories on here about people who eventually found a way back to some semblance of normalcy, The inspiration I gained from the positive posts on this forum gave me hope that I would be ok. Different, but ok. I found a combination of drugs that is working at the moment and the least I can do is let others newly diagnosed know that for many of us it really does get better and not to fear the medication.
My identity was always tied with sport and movement of all kinds. When I woke up one August morning and found myself scooting on my rear to the toilet unable to brush my teeth, hold a hair brush or lift my arms over my head I panicked and became an emotional wreck.
There was a long road of many doctor visits prior to that day in August that never even warranted a blood test. I didn't have textbook inflammation that doctors are all taught to look for and was left with the recommendation to slow down and accept that I was getting old.
It was years later when it finally presented in my hands that I realized something was terribly wrong and went to a new doctor and was given an MRI which revealed bone erosions in three knuckles and all of my toes that was unmistakably RA ( Bone erosions from RA are very distinctive to any other degeneration) I have a rather aggressive form of RA, or so I was told, and it took awhile for me to understand what that meant. I thought everyone gets bone erosions. I thought everyone had difficulty making a fist or tying their shoes. I thought that eventually everyone tests positive for anti CCP. The truth is there are many variations to the same disease.
In the beginning I wanted to eschew drugs. I dreamt that if I slept in fields of kale and quinoa, munched on spinach and turmeric and showered myself in fish oil I would one day wake to a new miraculous disease free self. I'm so grateful that I chose to trust my Rheumatologist and take Methotrexate and Humira along side trying a popular anti inflammatory diet. It took a very long time for the DMARDS plus a switch in Biologics to work and all the while the diet was doing nothing. I stuck with the scientific, overpriced, toxic, corrupt medication that Big Pharma offered and for now there are no new radiographic changes and I truly believe that science rocks.
I'm cycling again and not just a few miles around town. I'm actually back up in the mountains and after more than a year of failed attempts and being left behind I am once again in the pack. I won that race in my category a few years ago and I won't lie and say I'm back full go and racing again but I am back climbing in the mountains for hours on days that are good and walking on days that are not so good. Please be kind and know that even though I may seem better off than you because I can cycle and walk I lost myself just like all of you and the struggle is real. I'm also very aware that all this may change tomorrow but I refuse to give up and only wish to encourage others to do the same.
There is a quote from the book "Tuesdays with Morrie", about a college professor dying of ALS, Lou Gehrig's Disease, where Morrie says, "But there are days when I'm depressed. Let me not deceive you. I see certain things going and I feel a sense of dread. Sometimes in the morning, that's when I mourn...and I mourn what I've lost. I give myself a good cry if I need it. But then I concentrate on all the good things still in my life."
I hope this helps someone newly diagnosed feel just a little bit better.