How do you heal from an incurable disease? How do you even begin to numb the pain behind all of this?
It’s safe to say that saying the slow goodbye to my health as I’ve gotten older has still been too fast for my heart, which continues to break each day as I must also say goodbye to so much along with it.
Ok, I may make you throw up from the strong cheese I am about to drop. Just keep in mind vomiting is a common side effect or symptom us chronically ill must go through.
I attended my first conference for some of the top patient advocates this weekend in Chicago and it was one of the most empowering experiences I could go through as a patient and as a proud advocate. I also got to represent Canada and Arthritis!
I’ll never be able to forget the weekend of April 26th to 29th 2018 and the people I met. I’ve rarely felt like I belonged in my life but there I did. It was my community, my tribe, my people. It touched my heart and helped heal a part of me I never thought could be. We are a community and watch out, because even though you may think we are vulnerable and weak because of our disabilities, we are much stronger than you can ever imagine. We are Patient Advocates.
Approximately 120 patient advocates for almost 40 conditions and diseases all bonded by chronic and life threatening illnesses.
There was a diverse amount of advocates from all over the states and several Canadians including the Canadian Janssen and Janssen team. I met WEGO Health, Psych Central, Health Central and my personal favorite Healthline along with so many more. Twitter, Google and YouTube were there to help guide us with their platforms and Wisdo helped us with creating videos. I really have no idea how or why I got picked to go but I worked so hard to cross of traveling on my list for advocacy. I love to travel, but can’t exactly afford it as a single mom on disability in one of the most expensive areas in Canada. I fight to keep this damn apartment because it’s the first place that’s felt like home since my childhood home and I need to be near my doctors. The fact I got to travel all expenses paid for by Janssen and Janssen, oh heck yeah, eh.
For a baby advocate just over her first year into this and able to actually find a purpose through the dark storm I went through before discovering what that passion inside me was even called and how much it would mean to me. I loved being an esthetician, I did not have a desire to wake up every morning and work though. I wake up every morning with a desire burning in my heart and racing in my mind that I am trying to create about Arthritis awareness, even through the pain and the fatigue of the disease. I get to be creative and I get to be 100% myself. I don’t need to please anyone, I don’t need to wear a mask. Patient Advocacy found me and I found my purpose. That is an unbelievably great feeling.
What I Learned & Discovered
I realized fear is my worst enemy, it is what holds me back. That and the stigma arthritis has shadowing it. At Healthevoices Arthritis has no stigma, it was fully understood. I was understood and my work was understood. Empowerment can break fear, I am breaking up with my fear’s that haunt me, it is a process. There’s parts of my story I fear putting out there because of judgement, I can’t be afraid of that anymore. I can’t be afraid of the past, of who I was or who was in my life. I need to live each day like it’s a new day.
I saw how beautiful, healing and powerful sharing yourself completely to the world can be.
He survived jumping over The Golden Gate Bridge. I invite you to watch his story, which is empowering but nowhere near as moving as seeing him in person. I felt compelled thanked him for his story and shook his hand, I felt so giddy when he said he liked my tattoos. He is saving lives in a remarkable way. I too am a suicide attempt survivor. I also have been over that bridge on a tour bus, very windy.
It was an unknown cry for help in the mania of my postpartum depression and emerging Rheumatoid Arthritis, the PTSD of becoming a mother after 14 weeks of pregnancy after the pill failed me and my very real health scare nearing preeclampsia, the csection and the intense pain of the cyst on my tailbone and entering single mother before my son’s first birthday, all the guilt and shame my mental and physical health was escalating to, my impulsive and risky behavior. I didn’t believe in hope. Suicide was not my answer. I didn’t know how to express my invisible pain and I was begging for help. It’s amazing how some people don’t believe in a pain they can’t see or understand, until they themselves feel the harsh reality of it.
Damn that feels good to get off my chest. There is a beauty in pain sometimes.
Back at home, back to reality.
Flying, compassion fatigue and pushing myself that much for that many days obviously had it’s toll on my body and my mind living with disease. My body and mind craved rest, I knew it was what it needed but I couldn’t miss a thing. I knew I would be paying for all of this. So worth it, I am stronger now.