I’ve had health problems for almost my entire life. I’ve even written two books and an award-winning blog about all of it! But, they never really “got to me” until recently.
The past year or so have been tough, to say the least. But — if I’m being honest, it’s the last decade, really. Sure, I dealt with RA & JIA, OA, Celiac, Bell’s Palsy, Dysplasias, Headaches, and Anxiety prior to 2011. But, the hits just kept coming after that year.
A brain surgery for Chiari. Hospitalizations for POTS. A bone marrow biopsy. PTSD. A lipoma excision surgery. Dystonia. Tendinitis. Reactions to medications. Ambulance rides. A total knee replacement. Worsening chronic migraines. A long-term relationship with steroid joint injections in my hands and feet; and Botox injections for migraines in my scalp. Possible covid and a chronic asthmatic cough. And, in the past year, a dog bite, my first broken bone, and several falls and sprains.
I have had more than one orthopedic surgeon at more than one practice say the following to me:
- your foot is ‘too far gone’
- your joints are the worst I’ve seen for someone your age
- your wrist looks like an 80-year-old’s
- usually we don’t do a thumb joint replacement on someone so young
- you’re the second youngest patient I’ve done a total knee on
- you will need a triple fusion (arthrodesis) of your foot; it may or may not work
- we could amputate it
- you need a reconstruction or replacement of both your CMC (thumb) joints
- you will definitely need a wrist replacement or fusion at some point
- your joints are too bad for stem cell
- ‘end-stage’ osteoarthriits and joint degeneration
- your left knee and right knee look like two different patients, one in their 30s, one in their 70s
- it’s too bad you weren’t able to get on biologics sooner to save your joints
… and so on.
And a lot of that may not mean a whole lot to many of you, unless you’ve experienced RA and/or the excruciating pain of a joint replacement. But the TLDR is that it isn’t a pleasant prospect.
Unfortunately, sometimes surgeries are literally the only treatment option and only way to improve quality of life.
I had my first knee surgery around age 13 or so. I had my second when I was about 26 or 27. I then had it totally replaced when I was a day shy of turning 33.
Currently, I manage my thumbs, wrist, and foot with steroid injections every 90 days.
It’s very painful. It sucks.
I know the new surgeries that I face in my hands and foot are going to need to happen soon now, however, because, after like 6 years of getting them done, the injections are starting to lose efficacy. My joints are feeling worse.
It’s at times quite disabling.
Typing is hard — so is texting. Opening a can or a jar? Forget it. Driving? Eh sometimes pretty uncomfortable. Sleep? Some days it’s a lost cause. Doing my hair? I rarely can. Cleaning, chores? Difficult.
And it impacts my hobbies and interests, too. My entire summer and perhaps the rest of the calendar year (not to mention travels, work, etc.) are going to be impacted by the seemingly-impossible decisions I face about my joints and potential operations to fix them. Heck – my entire life could be impacted!
Pain and immobility is a b@#$%! And while there are worst things than living with an illness or disability, and I am so blessed in other ways, it is a challenge more often and in more ways than most people could know.
This video is lengthy — an hour long. But — it’s the same as listening to a podcast! Here, I talk about some of the decisions I face and share a little more about my sometimes-difficult journey. I’d love if you could watch, but I understand if you cannot.
In the meantime, I urge you to check out the new PsA Healthline App from Healthline. I’ve partnered with them to help share and promote this wonderful patient community of like-minded individuals and Psoriatic Arthritis patients and caregivers. It’s free to download, so, you should take a peek and see for yourself why I’m so excited to be an Ambassador! After all, when you deal with health nonsense, it’s nice to know you’re not alone!!
🎥 Long video. But if you have an hour to listen to a podcast or binge-watch a show, or play a game on your phone, then you have an hour to listen, watch, and hear my #truth! 😉 If you or someone you love live with RA, OA, chronic illness or disability, you may even relate. (And if any birdwatchers or musicians want to listen, or you’re just a friend or family member who wants a life update or to show support … here you go! You’re welcome! 😉)
🐞 ⚖️ ☯️ Life presents hard choices at times. Unique circumstances can make these decisions even harder. Whether it’s traveling… Whether to join a gym… Whether to have children… What type of career path to take or what kind of work to do… Whether or not to have a surgery, or take up a new hobby, or try a new med or a new style … Sometimes even basic choices can seem impossible and some decisions, very difficult.
🌟 While this vlog starts out on the more lighthearted side, it gets deep, personal, raw & real.
I do promise that it has a point. ♥️
You may even learn something! 🤗
And I truly THANK you all for your love and support, always.
Be kind and have a great day! ☀️ You never know what struggles someone battles – big or small – behind closed doors! 💖
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