The door opens and my eyes drift from the paperback in my hand down to the black shoes gliding past my toes. I tuck Jane Austen’s Pride & Prejudice in the open gap of my shoulder bag and adjust myself to face the newest specialist on Elena’s roster of Lupus warriors. I shook my dermatologist’s hand and smiled uncontrollably.
My skin specialist was Captain Jean-Luc Picard.
Okay, so obviously he wasn’t actually Jean-Luc Picard and the dermatology clinic was hardly the Starship Enterprise, but his resemblance in voice (yes, he had the accent too) and manner made our 45 minutes together extremely amusing.
I was referred to Dr. Picard (let’s call him Dr. Picard, shall we?) when I went to my GP about a year ago with tiny sores on the tips of my fingers. They looked like mini, fleshy mine fields that stung with every touch. I hid them very well, as I hid all my painful secrets and as always, only one Keeper was privy to the sight. He had encouraged me to go to my GP after they failed to heal in the upcoming weeks. To make things even more pleasing, my nails were discoloured and grew out in a distorted curve. My chest and joint inflammation were also at an all time high, affecting my ability to breathe and giving me a slight limp. We were going through a severe cold snap at the time and my Raynaud’s had my fingers and toes white and bloodless for the majority of my days. My butterfly rash was constant, flashing the red alert as it sat angrily atop my cheeks. I had seen better days to say the least.
Months later, when the referral came through, the sores had finally healed up but it had taken months to do so. My appointment with him was supposed to have happened in August, but I was busy confusing the doctors with my brain inflammation shenanigans. My nails improved as well, but I noticed when I checked out of the hospital, portions of my nails were black and discoloured. That disappeared too, with the exception of one baby toe nail. I was feeling odd about going to see the dermatologist after so much time had passed, but I decided to go anyway.
Dr. Picard held my eyes for the duration of our conversation, gesturing solemnly (yet quite pleasantly) during his detailed (and at times, perhaps overly so) explanation of why the skin on the tips of my fingers had decided to explode. It took great effort to stay connected to what he was saying as I found myself drifting off on the lilt of his British accent, thinking of the great fun I would have blogging about him when I got home. I watched him nod gravely as I explained my symptoms.
“It’s because of the Lupus, you see,” Dr. Picard stated as he sat scribbling on my file. Oh… right. Of course. Somehow a part me thought it had to be something else. It can’t ALL be Lupus, can it? There must be something it CAN’T do.
“The Raynaud’s restricts the blood to your fingertips and when it is particularly bad for long stretches, sores and malformed or discoloured fingernails result.” How absurd it was to watch this serious, sincere clone of a starship captain, explain in detail the preventative measures that can be taken from the kinds of lotions, cleansers, brand of thermal sock and boot, even price points and the difference between no name and brand name. At one point, he told me to put on my jacket, telling me to feel free to put on my mittens – “Don’t be embarrassed, I know how it is.” I almost laughed. Not because I didn’t believe him, but because it felt so odd to speak of my Raynaud’s pain as a topic that was worthy of lengthy discussion and of enough concern that he wanted to have my follow-up appointment in the hot summer month of July so that my hands and toes would not get cold as he examined me.
I asked about my increased risk of cancer, which is quoted on several of the drugs I am/have/will take (Chemo (Cyclophosphomide), Imuran, Methyltrexate) and if I should be checking the moles on my body. A lengthy discussion ensued on how and what to check for, tips on taking pictures of moles, to an assurance that I would not have to take off my underwear for a full body examination. Oh, and while waiting in the examination room, to please keep my jacket on over my gown and please, don’t take off my socks and shoes until he comes in. It was of the utmost importance that I keep warm until the very last second. My hands and feet were giddy from all the attention.
As I stumble around on this strange voyage of healing and discovery, I am finding that a good, kind, caring doctor does more for me than explain the science of my disease, but gives within their sincere and concerned demeanour a validation for all the pain I have felt these past eight years. It makes it all worthwhile to finally have someone say that it was REAL, that I didn’t over-exaggerate how much it hurt, and that HOLY SHIT, someone really wants me to know that my life doesn’t have to be that way, that I can actually have a life of real quality.
Dr. Picard had decoded the mystery of the exploding fingertips and I thanked him accordingly for all the time and info he had given me. I imagine that the real Captain Picard, in response to the possibility of living a quality “Lupus Life,” would say:
“Make it so.”