Every Groundhog Day is also Rheumatoid Awareness Day:
The term “Arthritis” has been dropped because RA is so much more than just that.
Like many other autoimmune diseases, it comes with a whole host of other issues:
I can honestly say I have all of these and others as well.
This year, I considered taking a pass on posting today about RA, only because I write about my spoonie life often, and also because I have a few other things I want to write about, but it is important to share so people are aware of what rheumatoid disease and other “invisible illnesses” really entail and what it’s like to to live with them.
We’ll start at the beginning of the year, which brought good and bad news, both RA related.
First the bad news: With simple walking, I found myself with a stress fracture, related to my RA and the meds I take for it. This unfortunately is just part of spoonie life. The real kicker is that those same meds make my body heal more slowly so I may have my friend, das boot, for much longer than I would prefer.
Then there was, for our family, the good news.
With my symptoms, I had come to the point where I could no longer work through an entire week. I would inevitably get sick and have to cover my shifts a few days into the week and have to be home. In addition to losing pay, it would also add medical expenses when the flares would send me to the doctor for unplanned visits.
After months of searching, praying, hoping, and crying, I was offered a Baylor weekend position to only work two shifts per week and maintain a full time position.
For a spoonie and her family, this is nothing short of a miracle.
See, the sad reality for rheumatoid patients is that arthritis is the leading cause of disability according to the CDC:
So, an arrangement that allows me to work full time and be home five days a week is an answer to prayer for us.
Still, I have been fighting off a nasty flare and yesterday brought a LONG afternoon trapped in the Rheumatologist’s office:
After meeting with him, he adjusted some meds and gave me a 25 day Prednisone taper that starts at 50mg for five days. I’m not sure if a Prednisone moon face can get more moon face-y, but I have a feeling we’re all about to find out.
So, today I added the Pred taper into the mix of all my other meds:
Though I’m taking a higher dose right now for the taper to stop the flare, I have taken Prednisone in some form daily for several years. Every time I have tried to stop it altogether, I have become terribly ill.
As a result of long term Prednisone therapy, I am now dealing with pre-diabetes:
It’s really a beast.
But I’ll keep trying new meds and hoping for new treatments.
And bugging the hell out of my doctors and reading about all of the new research.
And I’ll also pass on my friendly neighborhood reminder that everyone who looks healthy definitely always isn’t. Some of us are quite ill.
It’s a really upsetting problem spoonies face, including myself, when you are able to look “well” at least sometimes, and there is often judgment to deal from those who think you should be doing more or aren’t really having the pain you are describing or can’t possibly be so sick. It is beyond hurtful.
Be well, everyone.