An Update on Pilar

Where has Pilar been?

You may have asked yourself this question in the last three months. While I was actively hitting the parks, streets, and businesses in Allston-Brighton in April and May, I began to notice symptoms that were abnormal for a healthy person in their mid 30s. I booked a doctor’s appointment, and like many, found it difficult to find an appointment with a PCP before July. In the meantime, my condition deteriorated and I found myself in the emergency room at BMC Brighton (formerly known as St. Elizabeth’s). I was admitted to the hospital and diagnosed with severe Ulcerative Pancolitis. I have since spent many days at doctor’s appointments and who knows how much blood has been drawn from my arms for test after test after test.

What is Ulcerative Colitis?

Ulcerative Colitis (UC) is an autoimmune disease with no cure. My immune system is attacking every area of my colon, thus the “pan” in pancolitis. This is a disease that I will carry with me for the rest of my life, but with proper management will hopefully be in remission for years. I just began my second long term treatment two weeks ago. I am currently immunocompromised and the treatment will suppress my immune system for most of my life. 

This may sound like a pessimistic outcome, but I can honestly tell you that I am not feeling down most days, while adjusting to my new status quo has been a full time project these last months. Some of the medications have changed the shape of my face and how my body functions daily. I have an amazing medical team at Atrius Health that has given me a new confidence in the future of my health and I am reassured that while this is not easy, we are committed to my care with the least amount of disruptions to my life and the work that I love to do. While my case is severe, I am told that with the advances in UC care, I should not be facing any serious surgery and management into remission is the goal.

Through this journey, I have learned of several friends who have this. A mother who was diagnosed post-partum. A dancer who choreographs and competes in her art. An old co-worker who was always available for a laugh in the office. I don’t know her, but even a member of the women’s US rugby team, Cassidy Bargell, has UC. All of these people (some with and some without colons) are now my heroes, showing me that a life in remission is possible and your body can still do amazing things, even if life looks a little different. If they can do it, so can I!

I am sharing this because invisible diseases are everywhere. People may not look sick, but their insides could be telling a very different story. I am certainly not the only person with this. I am not special. But the more awareness we bring to these diseases, the better we can support those around us. 

What will the campaign look like now?

We are relaunching! You will begin to see me out and about, though probably masked depending on the environment. In the plans are a block party, voter registration drives, and canvassing. We had great conversations at the launch party with ideas that I believe we must put into action. Not because they are helpful for getting my face and name out there, but because they are genuine ideas from my neighbors on what they want to see in our community.

How can you help?

Well wishes are certainly welcome! I want to say thank you to those who have sent me cards and get well packages. They have brought tears to my eyes, literally. I am lucky to have friends in the neighborhood who have jumped in to let me know they’re thinking of me. I am humbled and feel so much love. 

Get vaccinated! Help protect yourself and people like me.Vaccines are a way to show care and love for your community by helping with greater immunity, keeping us healthier, our healthcare facilities running smoother, and our healthcare workers with a better workload in an already hectic environment. 

With the break, I am behind on some metrics that help endorsers commit to a candidate. If you are able to contribute to the campaign in some way, please reach out via email (info@ortizforboston.com).  

I remain committed to the work that I believe Allston-Brighton deserves. I count myself lucky for being in this position. This experience has brought to light more ways that we must do better, and highlighted more voices that should be brought forward. I thank you for your time and patience. Please let me know if there is anything I can do to help.