Hello, my darlings.
The last time you heard from me here on DitL, it was to tell you that I was swamped with daily doctor visits as I searched for insight into my mysterious ongoing health issues. I’ve been lucky enough to find some answers since then and I want to share them with you.
First, I want to say that the love and support of my online community has been such a light for me during this difficult time. So many of you have left cheerful comments, DMed me pretty pictures or funny videos, recommended books and tv shows to keep me entertained, or even mailed me little surprises to raise my spirits, and I am so grateful.
It means the world to me to know that so many of you have been keeping me in your hearts.
After many tests by many doctors, I have been diagnosed with Hypermobility Spectrum Disorder, Myofascial Pain Syndrome, and Fibromyalgia.
I also have a few secondary things going on – including cervicogenic headaches and my familiar nemesis, costochondritis – which are probably caused by the Big Three diagnoses up there but also exist as their own individual issues.
My diagnoses are all chronic, which means these are long term conditions with no cure. It is possible that I will be dealing with this for the rest of my life.
What does that mean?
My primary symptom is chronic pain: nearly constant and frequently severe, with its ever-present sidekick of debilitating fatigue.
Chronic means incurable, but many chronic conditions can be “managed with treatment.” That means that if you are lucky, you’ll find some things that help ease your symptoms.
“Managing” a chronic illness is mostly trial and error and sometimes all you can do is just try not to make anything worse. Currently my health dictates every minute of my day, as I constantly reevaluate whether or not I’m feeling well enough to leave the house or write or drive or cook for myself or even sit at my computer. It’s unpredictable and it changes day by day and hour by hour.
There also might still be more to the story: this area of medicine isn’t well understood and it can be very difficult to get firm answers.
The good news is that nothing I’ve been diagnosed with is terminal, so there’s no reason to believe any of this is endangering my life. That’s a powerful silver lining.
But have you tried yoga/celery juice/this diet I want to tell you about?
I very much appreciate the urge to want to help, but I am not looking for any new treatment suggestions.
I promise that if you can find it on Google, casually think of it, or have heard that it helped your friend’s friend one time, then I am already aware of it.
Unless you can give me the name of a great doctor who lives near my house, takes my insurance, and has years of specialized experience treating my exact conditions, I do not want any health advice.
(If you you want to learn more, here are a couple of great articles about chronic illness and unsolicited advice.)
Are you still going to write about books & jewelry?
Now that I’m not going to quite so many doctor’s appointments, I am going to start blogging again! There are actual drafts in my queue already, y’all. It is happening!
I’m also still posting on IG and writing for Instore Magazine. It’ll probably be a minute before I can even consider traveling to cover trade shows or visit jewelry stores, but I have a few tricks up my sleeve in terms of upcoming content.
Also: I’m getting ready to sell a bunch of my personal jewelry collection(!!!!!). If you’ve ever had your eye on something that lives in my jewelry box, your time is coming.
I’m working to find the right balance between enjoying my life as much as possible and searching for new answers. I go for walks with my husband (sometimes very short walks), I take long baths and frequent naps, I read and do physical therapy and acupuncture and visit doctors.
I am someone who has always liked to make plans and follow them, but chronic illness has held me at gunpoint and forced me to figure out how to let go of that. I have had to surrender expectations and just go with the flow, because that’s the only way it’s possible to do things now. That makes it a little hard to run a business – or a blog – but we’ll see what we can do.
For now, chronic illness and chronic pain are something that affect me every day. I’m working on learning how to live with it, because this is what life has given me and I’m not willing to give up on life.