This Brutiful Life

I wrote my first blog post one year ago today on January 6, 2023.

I wrote the post in the morning hours when I thought I was going to still be receiving medical care from my previous team of doctors (a chiropractor and an MD) who offered their time and services to us free of charge. We had 2-3 appointments with them per week outside of regular business hours. [See Backstory posts for more details.] At the time, my husband and I only paid for discounted treatment protocols, vitamins, and therapy sessions. We were still paying a significant amount of money out-of-pocket, but it was significantly less than what we would have paid if my team of doctors weren’t donating their time and services. As I was setting up my blog, I thought my posts would mostly be about the healing journey with these two doctors.

In a very surprising turn of events later that same day, I found out that these two doctors would no longer be my medical providers. Due to unexpected significant personal life events that happened around the same time in both of their lives, they no longer had the time and energy that was necessary to be my medical providers since they were providing my care after hours. We offered to pay them for their time and services in order to try to stick with their program, but it wasn’t about the money for them. They felt like they needed to spend their time and energy dealing with the aftermath of the events in each of their personal lives.

In the blink of an eye, we were in the all-too-familiar situation of starting again and trying to figure out our next steps. And, we knew we didn’t have much time to waste. There are not a lot of medical practitioners who provide the type of medical care I was receiving at that time (to put it as simply as possible, a combination of conventional and complementary/alternative medicine) and who also have that specific chiropractor’s unique skill set. We knew we were going to have to piece together treatment from a variety of practitioners, and we also knew that it was going to cost a lot of money. 

With all of the events that day, I almost decided to discontinue the blog before it even started. I wasn’t sure I had anything to share anymore. But, then I remembered that I wanted to share the authentic messy middle of our lives, and this was a classic example of exactly what happens in the messy middle of trying to survive an undiagnosed (at the time), invisible chronic illness. So, after thinking about it for a few days, I decided to update my first post to past tense (to indicate what was now my “previous” team of doctors) and to go ahead and publish the post and make the blog viewable to the public.

I had no idea what I would write about since my path had taken such a quick and sharp turn, but I had so many people tell me that I should share my story in some way, so I decided to just wing it. I truly believed in sharing the messy middle in order to help others feel less alone. If nothing else, I could at least do that. As Adam Grant recently said, “Sharing your experiences is an act of service. When people see themselves in your story, they feel less alone.” In addition, sharing my story and being more vulnerable and authentic had the potential to cultivate more authentic connections in my own life.  [Side Note: It didn’t. It has actually had the opposite effect in some cases. See my post on Comparative Suffering for more info.]

The only thing I knew for sure one year ago on January 6, 2023 was that my story was going to be a combination of a lot of learning, making mistakes, feeling lost, finding success, and starting again. I was also relatively sure that many of the people who would be reading my blog would expect for my story to move forward in a straight line and have a quick resolution, but I knew from experience that there was going to be quite a few twists and turns. My life was going to continue to be simultaneously brutal and beautiful — life always is.

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My goal was to be as honest, open, authentic, and vulnerable as possible along the way, and to remember who I was at my core in the face of the criticism that was likely to come my way. I already had 20+ years of experience in following my gut and blazing my own trail, and I knew this wouldn’t be any different. To share my story, I just needed to keep putting one foot — or one word, in this case — in front of the other.

(credit: unknown)

A lot has happened in the year since my first post was written. I immediately made phone calls and scheduled consultations with a variety of medical practitioners. We paid for a lot of blood, urine, and hair sample testing that was not covered by insurance. We learned a lot more about what was actually happening in my body. We found a doctor who seems to have a lot of experience and a high success rate with patients like me. We found excellent support practitioners to be part of my medical team. We traveled to a neighboring state (twice!) for my oral surgery and post-surgery treatment. We continued to attend our weekly therapy sessions to make sure we were tackling all areas of health and wellbeing and to receive emotional/mental health support from an expert who specializes in chronic illness and trauma. We moved into my parents’ house for 4 weeks to try to ensure that our home environment was suitable for a patient like me.  We became a lot more knowledgeable in home environment factors, air quality, etc., and we found out that there are generally no right answers concerning this topic.  We spent a shitload of money in an effort to save my life (see Finances & Finale (2023)). We laughed.  We cried.  We danced.  We leaned on those closest to us.  We learned a lot about ourselves and the people in our lives. And, we loved and supported each other through it all.

One year later, I still have no idea where this story is headed next.  Whatever happens, I hope I have the courage to keep my heart open in order to be able to give and receive love.

One surprising piece in all of this is how grateful I am that I decided to start sharing my story on January 6, 2023. If I hadn’t, I wouldn’t have been able to remember everything that happened throughout this last year. Looking back on it all now, I am so proud of us. Living one day at a time was helpful along the way, but viewing the year as a whole has given me the opportunity to see it for what it was: A story about love and triumph. We are not only surviving here in the messy middle with ups, downs, and all arounds, we are also thriving as we live alongside an invisible chronic illness.

In response to one of my blog posts published a few weeks ago, our amazing therapist sent me this:

I hope this sentiment is true. I hope that I have been kind to people, made people laugh at times, and inspired people along the way. I will continue to do my best to honestly and authentically share the messy middle in the hopes that I am helping others in some way. Maybe our therapist is right. Maybe I am creating a glitteringly beautiful network and trailing a bright pathway that I don’t even know about.


Brutal. The messy middle.

Beautiful. Love and triumph in the midst of the messy middle.


Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.