… One Year Later

Welcome back… to you as well as to me. For about a year, I’ve stepped back from my blog and almost all of the internet, with a few exceptions I’ll tell you about soon. Since it’s been such a long time, I thought I better take a moment to reintroduce this space for my readers and lay some foundations for what’s to come. A year is a long time and I’ve been through a lot of changes — some of which I will share, and one of which is that I am much less accustomed to the level of vulnerability and digital intimacy anyone who has kept up with my online activity has seen from me before.

Let’s jump into some of the major life situations influencing my perspective these days and then I’ll tell you what I anticipate for this blog going forward. Deal?

They found a cure for cystic fibrosis. Sort of.

Trikafta is a complicated medication that has to be taken twice a day forever, but it takes away a lot of the symptoms and negative aspects of CF for a lot of patients.

I started it last fall and it was a wild ride! I started to feel incredible almost immediately, and it became apparent how much of a toll this disease really takes on my energy levels. The overall improvement in my health provided contrast that made me realize how much work it really is living with cystic fibrosis pre-Trikafta… and the drastic change in life expectancy and hearing from my doctor that I now had a good chance of a normal lifespan (rather than the estimated decline in my lung function and slow miserable death in my 40-50s) was a gift that was surprisingly difficult to let in. I spent more of the winter than I’d like to admit trying to come to terms with the reality that I was in financial ruins and had a whole retirement to worry about… while chiding myself for not being grateful that I get to live longer and that’s amazing. It was an overwhelming mixed bag of intense emotions…

And then I realized the mental health side effects of Trikafta were very real, and were definitely coming into play for me. My anxiety and depression and the symptoms of my bipolar disorder were more intense than I’ve ever experienced them, and by spring my brain had become a dark and terrifying aspect of me. I was struggling to get through every day and was not feeling at all like myself.

I’m glad I was fairly isolated during this time, and I’m happy to share that cutting my Trikafta dose in half, while bringing back some of my difficulty breathing and a general sense of exhaustion, has brought me back to my normal mental state. I feel like myself again, and the CF symptoms are still better than without the medication at all.

Sensitivities I’ve always had have become more intense…

My new autism and ADHD diagnoses are starting to make sense of some of that… Light sensitivity and noise becoming overstimulating have become increasingly disruptive to my life and have made it difficult to be present in my day to day interactions, but it’s something I’m actively seeking to balance.

My love for winter, cozy lighting, and very gentle vibes in general are all starting to become more of a necessity than a preference and I find myself relating more and more to cranky old folks who are kind beneath their grumpy presentation. (Heh heh)

Photography, ukulele, and writing in shady, isolated nature spots have been my most consistent hobbies and my favorite ways to get grounded, create some inner peace and silence, connect with creativity, hold safe space for myself, and open up to the nourishing sparks of joy I’m always searching out.

I’m still not fully healed from shock of betrayal in romances and friendships between 2020 and 2022…

Trust and connection in person have become such a small piece of my life and I find myself holding back and turning away much more than I open up lately. It’s something that makes me sad to see because I always loved my ability to connect deeply and share vulnerable spaces, but the anxiety, pain, and fear around the last few attempts at trust and friendship are just too much, the wounds haven’t healed despite the tender loving care I’ve shown myself in the aftermath. I’m beginning to think the wounds never will heal, and that maybe it’s just up to me to muster up the courage and strength to be vulnerable anyway and to tend to my own needs better. I feel responsible for my own well-being, which I think means not allowing myself to walk into situations where I may become hurt too badly to get back out, so for now I am tending to the wounds and inviting my heart and mind to open back up, even if only a sliver at a time.

It might be a little awkward as I find the balance between writing the way that I do and also keeping enough to myself to be responsible for my own well-being, so thank you for your grace and patience.

Going forward…

This is still a space to share the parts of the journey most people don’t talk about.

My next book, book two in the Retold Fairytales series, is a bit darker and more intense than Crystal Belle. Releasing something so deeply personal and emotionally charged feels extremely vulnerable, so to help with the process, I’ve decided to share a sort of behind the scenes newsletter series leading up to the book’s release.

Social media continues to disgust and annoy me with all of its noise, and the increasingly nosy, unethical, and money-hungry behaviors behind our social media platforms has me eager to remove what’s left of my dependence on them, which nowadays consists only of Instagram.

While I might still keep my Instagram for now, going forward I plan on transitioning to a periodic photo blog documenting my photography practice and sharing visual and audio glimpses behind my creative process.

I’m excited about this for a few reasons, but mostly it will bring me peace of mind to know my creative work belongs to me and isn’t being taken advantage of or used against my audience by being stuffed between obnoxious ads, risking being hacked, or garnering unsolicited recommendations on where and how to promote my content. (Grah.)

Thank you so much for being a part of this space with me, I’m glad you’re here. Subscribe to my newsletter for the most personal updates and thought-provoking letters, and be sure to check out my books for a creative, playful, gentle, raw, and deep little place to heal and grow your own heart.

Written with love from the Oregon coast.