It's Definitely Time to Reintroduce Myself
Oh goodness, where do I even begin? First off, this has been a long time coming. I started blogging my journey last year as a way of therapeutic relief, and then stopped because I just wasn’t ready. However, when I stopped, I listened, read, and digested the stories of other patients with chronic illnesses, and I realized just how important it is to share our stories and our lives.
So, let’s take a step back for a second. While this all came about as a desire to learn more about my Hidradenitis Suppurative (Hi-dra-den-I-tis Soup-pur-a-tiv-a), yes, it is a mouthful. Yes, every patient you ask will tell you that they hope the person who named it spends the rest of their life walking barefoot on a road of small Legos… In coming to learn more about my HS, I also learned that many of us are dealing with the comorbidities that often coincide with HS. I have HS, Rheumatoid Arthritis (RA), Chronic Hives with Dermatographia, as well as Hyperthyroidism. I’m clearly having a healthcare party over here. I guess the good thing is that I have learned that I AM NOT ALONE.
In addition to my health diagnoses, I have a child with Epilepsy, Autism, celiac disease, and Asthma; another child with Asthma, ADHD, and generalized anxiety; another kid who is just living her best "muffin" life (iykyk) with Asthma; and a teenager who just graduated high school. To say that life in our house is chaotic would definitely be an understatement.
Now, on top of ALL of that, I'm a business owner and a wife to an amazing partner who keeps me going. Seriously, my husband is a freaking gem y’all.
As I have gotten older and have leaned more into the things that make me happy, I have found that while I LOVE sharing people's stories through pictures, my heart thrives on being a patient and victim advocate. I love shining a light on not only the conditions that I have but also the conditions of others. I want to normalize talking about our struggles and to get people to stop seeing "chronically Ill" as "chronically incapable".
So what does all of this mean?
Day to day, I live my life at a baseline of pain that, for the average person, would knock people on their derriere. However, because I'm a mom, a wife, a photographer, and an advocate, I refuse to sit down too long and let my illnesses take anything away from the goals I have set for my family's life.
One of the things that has fascinated me as I have followed other chronic illness fighters is how differently we all choose to live our lives. Some are still highly embarrassed by their disease/diseases, some live loud and proud, and some (like myself) live in the in-between. What does that mean? It means that I will freely talk about my conditions and I am not ashamed of them, but I still struggle with accepting my flares (both the visible and the invisible ones). So how does that translate to everyday life? Well, the simplest answer is, I take it day by day, some days I let the pain win, I am human after all, and others I say screw it and go in head first into the laundry list of things that need to get done because I can’t just spend every single day wallowing in my pain even though I want to a lot days.
There are things that I have found that help, though.
For one, I have stopped worrying about impressing those around me. I dress in a way that if/when I am flaring, whether it is my HS, RA, or any of the other conditions, I am comfortable. HS can get messy, RA can be restrictive, and don’t get me started on the constant itching that comes along with chronic hives and Dermatographia.
I used to get jealous about the people who felt/feel comfortable enough to “flaunt it if you got it” bandages be damned. Then I realized that what works for one doesn’t have to work for another.
So that leads me back to today and this blog, “Chronically Outspoken” where I will be focusing on living life through the discomfort for some amazing patients and friends, standing in faith, screaming profanities into the abyss, how all of this changes and effects our relationships, resources I have found to help patients and parents advocate for themselves with their doctors, and just the chaos that surrounds it all while trying to be a functionally unfunctional adult through it.
