It’s hard to believe that this past October marks six years of medically controlled remission from all three of my autoimmune diseases – Crohn’s, psoriatic arthritis, and psoriasis.
I’ll never forget the day I received the call from a nurse who reported that my blood work was “normal”. Normal. After two grueling years of hospital visits, failed treatments, crippling pain, and off-the-chart inflammation levels, my body was finally at peace with itself.
Each year is a meaningful milestone, but I can never help but feel like I am living on borrowed time. The reality is my life-saving medication just might not work forever, and unexpected life events could send me into a flare at any moment.
But for now, I celebrate. I celebrate the 2,190 days I have lived free.
In honor of this celebration, I have decided to commemorate this milestone by documenting my journey through music. This playlist captures a great deal of the emotions I have endured over the past six years.
While this has been a cathartic exercise for myself, I hope that some of it (or perhaps all of it) might just resonate with others battling chronic illness and serve as a source of comfort -- to feel validated and moved through music.
I won’t just survive, oh you will see my thrive
Don’t be surprised, I will still rise
I open with this song because it’s how I have strived to approach my autoimmune diseases from point of diagnosis. Lying in the hospital bed, fueled by morphine and the will to keep fighting, I pulled out my laptop and furiously began googling the diseases wreaking havoc inside of me. When the term autoimmune populated the search results, I was struck. I had never heard of autoimmune diseases before, but here I was with three of them alongside 50 million other Americans fighting a gruesome battle. It was from that moment I knew I would be an advocate for these patients. And despite the hell on earth I was living, I would survive, thrive, and rise.
PS – This song was influenced by Maya Angelou’s poem, And Still I Rise. Hence, the letterboard photo posted alongside this blog. I’ve woken up to these powerful words on my letter board everyday through the month of October as a reminder of my strength and to ground me in why I do what I do.
Head Above Water Avril Lavigne
Yeah, my life is what I'm fighting for Can't part the sea, can't reach the shore And my voice becomes the driving force I won't let this pull me overboard
God, keep my head above water Don't let me drown, it gets harder
A newer song from an artist whose Let Go album regularly drained the batteries on my Walkman when I was a pre-teen, Avril Lavigne wrote this song about her battle with chronic lyme, an autoimmune disease. It couldn’t be more poignant in capturing what it feels like to be trapped in a disease flare. It’s scary. It’s painful. You often feel like you’re drowning. When I first heard the song, it reminded me of the piece I wrote, Hell is a Bathtub, capturing the dark side of living with a chronic illness.
And she says, oh I can't take no more Her tears like diamonds on the floor And her diamonds bring me down 'Cause I can't help her now She's down in it She tried her best and now she can't win It's hard to see them on the ground Her diamonds falling down
This song, written by Rob Thomas, is about his wife’s battle with an autoimmune disease. It’s about how devastating it is for him to watch her in pain and knowing there is nothing he can do to help but to channel empathy and be there alongside her.
This song makes me think of my family, especially my mother, who served as my primary caregiver when I was initially diagnosed. I could see the pain in her eyes, she often said she wished she could “take it away and give it to herself” so I wouldn’t have to suffer.
I would argue being a caregiver is often as challenging as being a patient in its own way. It breaks my heart to think of how my diseases have impacted my family, and I am grateful for their love and support through my darkest hours.
You're such a beautiful drug I can't get enough
So obviously, Zac Brown isn’t talking about biologic medication here, but I AM. Shout out to Stelara for giving me my life back!
A few years back, I planned a Fall getaway with my girlfriends made complete with a winery trip, hiking, dancing, and a lot of food. It was magical time I hold near and dear to my heart. Lady Gaga’s Joanne album had recently come out, and I made my friends listen to this song on repeat. It reminds me of how lucky I am to have such incredible friends in my life and that I am well enough to enjoy weekends away with them.
Well for starters, this song is a jam. And I felt it deserved a feature on this playlist. It reminds me of summers spent with my family at my Aunt and Uncle’s lake house and the freeing feeling of a boat ride and putting work away to spend time with the ones you love. I’m grateful that I am well enough to make these memories with my family.
One of my favorite Zumba songs, the translation for la gozadera is “the enjoyment” or “the party”. I am grateful for the gift of movement and ability to express myself through dance.
Tomorrow Never Comes
Learning to fly, letting go of it all Learning to fly, letting go of it all I'm gonna live Like tomorrow never comes There's no end in sight Tonight we black out the sun Better hold on tight Before you know it's gone And live like tomorrow never comes
Zac Brown Band is my absolute favorite (as you can see they’ve gotten two songs on my playlist). Every time I see them in concert (4 times and counting!) I feel like I am living more in the moment than I ever usually do. In so many parts of my life, I often get caught up in worrying about the future as opposed to enjoying where I am at now. And while there are times where I get caught up worrying “What if I fall out of remission?” “How will chronic illness impact my future?” I try to use this song as a reminder to live in the moment.
Tougher Than the Rest
Well if you're looking for love Honey I'm tougher than the rest
And in classic Lilly fashion, of course I am going to take a moment to talk about the future right after I say I am going to try to live in the moment.
Last year, I wrote about an experience I had dating someone who was afraid of my autoimmune diseases and the future of the unknown. And as I said in an article I wrote for the Crohn’s & Colitis Foundation, nobody gets through this life without facing adversity. And a reminder to all of those living with chronic illness about your current or future partners:
“Everyone has something they carry with them. It comes in all different forms. Sometimes it’s glaringly apparent from the beginning, other times it may take a while to surface. Life is unpredictable. Perhaps they don’t have any sort of significant “baggage” now, but their life could change in an instant and suddenly their world is turned upside down. And how lucky are they to have you by their side to help them get through it?”
Those of us living with chronic illness are some of the most resilient people out there, we’re “tougher than the rest”.
Girl On Fire
A few years ago, for my family’s annual Christmas Secret Santa Swap my cousin Alaina gave me a card now prominently displayed in my room, etched with words that have never made me feel more empowered:
“Some women fear the fire, some women simply become it”
This song beautifully embodies this sentiment.
Don’t Stop Me Now
I’ve dedicated my life to making the world a better place for patients, and I don’t plan on slowing down anytime soon.
So don’t stop me now, I’ve only just begun.