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.
The diagnoses(es)
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?
Yes!
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.
A recent hospital visit when I was discharged from the Emergency Room at sunrise.
What now?
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.
xoxo,
Becky
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You know that I understand completely, 100%. I had to stop working. But my diagnosis came very late. I hope for better for you.
Charlotte Issyvoo
Thanks so much, my sweet friend. We shall see.
xoxo,
Becky
I was reading at Gem Gossip’s page, saw your link, and thought “hmmmm. Wonder how Rebecca is doing?” I’m one of those shameful blog followers who reads and appreciates but doesn’t usually comment. Lazy. Yes, that’s me.
I live with chronic pain and it only goes away when I lie down. Not a means to success and happiness for I’m too old and too Baptist to make my living THAT way. 🤣
I’m very glad you are slowly but surely finding your way out of the woods. Looking forward to hearing more from you on the blog soon.
Thank you so much for this lovely comment, Lisa! I appreciate the good wishes and support (and I love all my readers, even the ones who don’t usually comment!).
xoxo,
Becky
Glad there is some progress, so sorry you are going through all this…hopefully they can help you more now that there is a diagnosis. Sending love..
Thank you so much, Dale. The support of my jewelry family means the world to me.
xoxo,
Becky
Glad to hear from you again. I’ve been thinking about you and praying. Thanks for sharing your journey with us. Glad you’re listening to your body in what you can manage. That’s been a good lesson with me and my chronic pain. But it’s helped me realize I need to work on enjoying as many moments as I can, also a good lesson. Love to you!
Thank you so much, Robin! Sending love to you too.
xoxo,
Becky
i have some of these things with which you have been diagnosed, so i wish you much love and strength. you are too vibrant a soul for illness to dim, and you will find a way to do what is important to you. good luck with your treatment and management protocols—everyone needs a unique combination of things, so really, advice is not terribly useful with conditions like these. i am so happy to see you posting again!
best wishes now and always!
Aw what a lovely comment – thank you so much. I’m so happy to be posting again and hopefully I’ll have more wonderful things to share with you soon!
xoxo,
Becky
So happy you at least have some diagnosis. I am still searching for mine. I send you love and support from a fellow traveler.
Thank you so much, Katheryn. Sending love and support back at ya.
xoxo,
Becky
Nice to know what you are dealing with. I have fibro. You will learn how to manage that as you learn how to manage the other chronic illnesses. It took time for me to figure it out. You have my empathy. Stay calm and rest.
Thanks so much, Kathleen! #Fibrosolidarity
Sending you So Much Love!! I’m also sending you a rainbow of Sapphires to sparkle at you.
Myself and my female family members have undergone a similar situation — my youngest sister has EDS (Ehlers-Danlos – a connective tissue disorder), along with POTS and hypermobility et. al. Of course, my Mom, Aunt, other Sister and myself all have some variance of these issues as well.
Youngest Sister is actually getting poked by a well known geneticists to figure out if she falls in line with actual hypermobile or if she’s somewhere in a gray, uncharted area. Researching auto-immune and chronic pain conditions is a bit of a needle-in-the-haystack adventure; especially the process of getting good care from a Dr. who LISTENS and is willing to fight on your behalf.
The best of luck to you and Mr. DiTL; there’s a wonderful community of Spoonies out here that are sending you lots of rest and comfort. XO
I love the idea of a cheerful sapphire rainbow sparkling at me! Thank you.
Also it sounds like you definitely know what I’m talking about! I’m very familiar with EDS but haven’t been able to get a doctor to seriously evaluate me for it yet. I have some pretty good doctors who are at least hypermobility literate but they really don’t want to go any further diagnostically. I may have to hunt down a geneticist eventually…maybe next year *shrug*
Thanks so much for the love and understanding. Sending spoonie solidarity to you and your hypermobile family.
xoxo,
Becky
Hi Becky,
So happy that at least you now have some answers/reasons for your pain.
If you need any images of gemstones to use in your blog, don’t hesitate to download any from our website and if you need any gemstone knowledge, don’t hesitate to reach out.
Stay strong!
Thank you, Simon!
So glad you’re back and have a diagnosis. Have you thought of
*JUST KIDDING!*
I’m happy to hear that you’re going to be blogging again and are working on managing everything. You have a lot of support from people you’ve never met! For fun:
Nalini Singh’s Archangel series. I’m on the latest book and have loved this one!
Catch and Kill by Ronan Farrow and She Said by Jodi Kantor and Meghan Twohey. READ BOTH. They’re incredible, terrifying, and show that women can do more by sticking together. Looking forward to the next post!
Ahahah this cracked me up – literal lol. Thanks so much for the book recs and the love.
xoxo,
Becky
Sending you lots of love, hope and pain-free times, Becky!! xo
Thanks so much, lovely Amy! Hope all is well with you. I miss running into you at trade shows!