Then Came the Diagnosis

I shouldn’t have been surprised, I was originally diagnosed in 2010. After a crazy rash appeared on my legs and blood work indicated inflammation in my system my doctors couldn’t figure out what was wrong with me. Was it Lupus? Was it Sjogren’s Syndrome? They were convinced that it was an autoimmune disease, but which one? I wasn’t convinced. While they were sorting it out, I drastically changed how I was eating and my body responded in kind. I believed that the early symptoms were the result of a virus. I almost fell off my chair when the University of California, San Francisco rheumatology department chair summed up my case and told me that I had rheumatoid arthritis despite testing negative. There are a number of criteria to be met to warrant a diagnosis; I had 6 of the 7 criteria. For the next few years I took medicine and dutifully went to the clinic every 3-6 months. But as time went on I experimented with going off the medicine and honestly didn’t feel much different. In fact despite the occasional flare up, I felt pretty good; although my hands fatigue easily. Fast forward several years and a medical insurance change and I probably haven’t seen a rheumatologist in 4 or 5 years.

My hands have been sore, sometimes worse than others but they’ve been consistently sore for at least six months; probably more. I have been attributing it to using my iPhone too much or poor ergonomics. I wasn’t listening to the messages from my body. I saw my primary care doctor the other day for something unrelated and mentioned it to her. She could see the inflammation in my joints and said they were warm. She strongly recommended a referral to rheumatology.

As I listened to my new rheumatologist, I had the same cavalier approach that I did at UCSF. All of my blood work had come back with no indications of inflammation and the radiologist who read my hand x-rays declared them normal. In the years since 2010 I had gone back to my old eating habits, but this past August I got serious again. My way of eating has had beautiful results. Outside of the issues with my hands I feel great. I was fully expecting the doctor to tell me to go home and lay off the iPhone. But she didn’t. I had the ‘almost fall off my chair’ experience again when she said I disagree with the radiologist’s reading. It turns out there is significant inflammation in my hands and some thinning of the bones. Thankfully all is reversible with treatment.

While she was describing the treatment and possible side effects I felt myself slipping into sadness and fear. Thankfully in the years since my initial diagnosis I discovered the power of coaching. I am leaning heavily on my bag of tools for this. I realized in that moment nothing was happening. I wasn’t experiencing any of those side effects, I was sitting in a medical office but my mind was spinning out into future “what ifs”. I took a deep breath, collected myself and practiced mindfulness; I stayed in the room and listened. Since that moment I’ve had a range of emotions, I’m not stuffing them down with Doritos as I would’ve in the past. I reached out to friends, acknowledged that I’m sad and I’ve just let it be. I am reminding myself that it’s ok to be disappointed. And I faced a difficult question that one of my brilliant friends (who happens to be a coach) asked: "What are you making this mean about you?" Bingo. I think subconsciously I believed or wanted to believe I’d beaten this thing, that I was in remission (if that’s even possible) or that the original diagnosis was wrong to begin with. When I stopped and asked what I was making it mean, the answers were interesting: I failed, I am weak, fragile and a victim. But here’s the thing...NOTHING had changed. I was diagnosed with this condition in 2010 and now in 2017 it was re-confirmed. In the seven years from that diagnosis I have become anything but a delicate flower. I discovered the power of coaching, believed in it so much that I changed careers and became a coach and a self-described all around badass. So after a few days of letting myself feel my feelings, my badass has re-emerged. I will go after this thing head on and will watch my thoughts because I know the energy I put into this will impact how I feel. And I will give myself the space to feel sad or disappointed without judgement or spiraling into future fears. While as I said, nothing has changed in my medical diagnosis, I have changed. Thankfully.