For the past week, I’ve wanted to write but haven’t because all I really had to talk about was illness and RA and Lupus stuff and I felt like people get tired of reading that.
However, today, as I was looking on my Insta at what friends in my Spoonie community were posting, I realized that even writing about this experience of being stuck in bed and what I’m dealing with right now may be of benefit to my fellow Spoonies.
It is comforting to know you aren’t alone sometimes.
So, here we go:
The Busted Foot Saga
A week ago, I went to the orthopedist for my broken left foot.
As I wrote previously, he put me in a boot up to my knee, gave me a knee scooter, and told me to stay completely off of it for three weeks.
After the three weeks, as neither of us is expecting healing (we have to do this for my insurance), I will be given a bone growth stimulator. We will try that for 6 – 12 weeks.
If that doesn’t work – and, honestly, with my blood flow issues, I’m not too hopeful – we will do surgery, despite the risks.
For now, it is quite painful, I am a terrible patient, and I am already really frustrated by being so limited in what I can do (which is pretty much nothing).
The Root of the Problem
I’ve written about the weight gain associated with my prednisone – and how it bothers me – but it turns out I have a much bigger problem now:
This is my third break of this bone this year, doing nothing to cause it. That means that the prednisone is weakening my bones.
Huge, huge issue.
And now, come hell or high water, it’s time to stop the pred.
I’m working on coming off of it now – so I am completely exhausted.
Like “need an hour to prepare myself to take a shower” exhausted.
But I know this is normal and will pass and I will be much much better without the pred. I just have to survive it.
For me stopping it means: no more damage to my bones (and we can see what we need to do to repair them), no more elevated lipids, no more massive weight gain (and the weight will start coming off!), no more risk of diabetes right now.
It’s definitely time.
The RA/Lupus Explosion
Of course, all of this stress, combined with changing meds, and my foot hurting and who knows what else (the rain? the heat? the gods are angry?) have all triggered my autoimmune disease in a major way.
Every time I think I’ve experienced the worst pain my RA can throw at me, another flare comes along and proves me wrong.
(I was hurting so badly today that I told my dad when he called that I would jump out my window – but I would just bounce down the outside stairs below and probably break the other foot. 😂 )
With this one, the worst joint pain has been in my spine, SI joints, and knees.
However, my left hand is hurting so much with use that I’m having to take typing breaks – never a problem before – and my skin just literally aches. I don’t know how to explain it better than that. Bizarre I say.
I see my rheumy AGAIN tomorrow and am going to push hard for changes. Something has to help me.
Spoonie Self Care
For now, while most of my time is being spent in my spot in bed, I am trying to take it easy on myself.
I am diffusing all the lavender, reading all the books, doing my school work, listening to all the podcasts, and taking all the naps.
Oh, and my appetite has decreased in a big way (thank God!), but, when I am hungry, eating all the carbs.
The best thing I can do right now is take care of me and get well.
So I am.
Be well, everybody.
Love and light. 💜💚💙❤️💛