"I Don't Know Where I'm Going from here, but I Promise It Won't Be Boring"
It started with a number. An unprecedented, abnormally high blood count. Back then, “it” didn’t have a name or much context. I felt healthy & strong, so I refused to let it scare me or slow me down.
We’ve watched this number grow slowly over the past 8 months. I’ve sat patiently through every lab, exam, biopsy and specialist visit with an open, optimistic view. The doctors are doing their best to solve the puzzle. We’ve asked a lot of questions, but have struggled to find straight forward answers. Ive held off on treatment because I want to know the root of the problem; not just the drug to mask the issue.
What is causing this number to rise? No one can seem to put a finger on it.
“ET” Phone Home —
I remember sitting on my board in the back of lineup when the whole beach started to spin. The headache was blinding and excruciating. I forgot where I was. A friend helped me paddle in and we went to the clinic to try and reset my equilibrium in my ears to stop the vertigo. A CBC lab informed us that the platelets in my blood had tripled and a bone marrow biopsy revealed myeloproliferative neoplasms; a group of chronic rare blood mutations. “Essential Thrombocythemia” (ET) — a fancy way of describing when the stem cells grow rapidly and produce too many platelets.
The diagnosis didn’t scare me. What scared me was the western treatment option.
It’s long term, aggressive and has driven my family and I to seek multiple opinions from both eastern & western practitioners up and down the west coast — from Bend Memorial to Bastyr Univ, to Meschi Naturopathic Laguna Niguel, to OHSU, to the National University of Naturopathic Medicine. I want to know all of my options; because I know knowledge is power. I’ve always been a firm believer in advocating for your health and letting your intuition play a major part in treatment. You have to trust your doctors and believe in your medicine if you expect them to perform miracles.
While navigating through the unknown, I’ve taken an inward gaze; spending more time in solitude, meditation and trying to surrender on the days when my body calls for rest. I’m learning how to save and channel my energy where it is needed most.
It wasn’t until a month ago when it started to slow me down; for the first time things started to hurt. Painful inflammation & stiffness in my joints, neck and back, accompanied by chronic headaches in the morning and night. Vertigo at the most inopportune, unexpected times. Physical therapy was helping but, it didn’t stop the inflammation from progressing upward. A couple days before Thanksgiving, the inflammation spread from my joints to my skull, causing me to lose 90% of my vision in my right eye. “Iritis,” we learned has nothing to do with the exterior layers of the eye but, is an auto immune reaction. For whatever reason, the body attacks itself, creating interior inflammation of the iris and causing massive vision change.
Iritis is reversible most of the time but, the high-dose of steroids they put me on are making me feel like shit and completely disconnected from myself. In turn, it’s also made me feel disconnected from everyone else.
Good news = “It” finally has a name and a diagnosis.
Bad news = They can’t figure out why the inflammation and Iritis is negatively progressing and we haven’t found a long-term treatment plan that I’m comfortable with.
*Reason to smile = I’ve been told I make a pretty good yogi pirate ;) No, I’m not wearing a patch, I just look like David Bowie.
“I don’t know where I’m going from here, but I promise it won’t be boring” —
Even though a lot of questions remain unanswered, we have made a lot of progress. We’re getting in front of the right people. I am grateful beyond words. Fortunately, I have an incredible family, support system and medical team fighting alongside me and we are all confident that we will be able to stop that number from rising. Right now, our focus is on reducing the inflammation and finding the best ophthalmologist and retina specialist out there.
If you’re made it this far, I’m humbled. Thank you for creating the space for me to be vulnarable. It’s been difficult for me to put myself out there. My inner circle has remained small, until now. It’s hard to talk about something when you can barely understand or comprehend it yourself. Sometimes you don’t want to talk about it because saying it out loud makes it feel that much more real.
My doctors say talking about it is good though. It allows one to clean house. To let go. To trust. To accept and receive support when we need it most, no matter how uncomfortable that may feel. We are all going through our own “shit,” just trying to find our way but, we are also a species that relies on love and connectedness in order to thrive and survive.
There is so much power and love in community.
I see you.
I struggle beside you.
I walk with you.