***I’m posting this late – on February 5th. I had originally decided not to, since I missed Awareness Day, but I decided it’s still important to talk about. – So I’m just running a little behind as usual. 😉
Today, February 2nd, is Rheumatoid Arthritis Awareness Day.
While I don’t talk about it as much – now that the CRPS Bag of Horrors has come my way, RA was my initial autoimmune diagnosis (after my celiac), it is the reason for my never ending prednisone therapy that has lead to all of these stress fractures in my feet, and its systemic effects have contributed to many of the health issues I have had recently.
It is a challenging disease to live with all on its own.
And, oh so painful.
So, this Awareness Day, I’ve decided to share with you some of the ways RA has affected me to give you some insight as to what this disease can be and why it isn’t “just arthritis.”
Since I was first diagnosed in 2013:
- My hands have progressively worsened to the point that I cannot open things and I drop everything. My fingers often get extremely cold and turn blue due to a condition called Reynaud’s phenomenon. They are painful and stiff at times, particularly when it’s cold.
- My eyes – which give me fits with my vision due to another disease – are like sandpaper. They are SO dry all of the time. I am an expert when it comes to OTC eyedrops. I know them all; I have them all.
- My spine. In addition to scoliosis, my RA has affected my spine. I have incredible pain in my lower spine into my hips. Recently, my right hip in particular has been horrible and I know I’m going to have to address this once my right foot has healed.
- My knees burn constantly when I flare and no medication will stop them. It’s miserable. I also wake up with the sensation of a jackhammer inside of them some nights during flares. It is an intense and breathtaking pain that is inescapable.
- My RA has affected, in total: my feet, ankles, knees, hips, spine, neck, wrists, mouth, and eyes.
- The pain in my joints has persisted despite pain medication, nerve medication, RA specific medication, and long term high dose prednisone.
- It was the long term high dose prednisone that has led to bone loss and the mild injury that Brought on my CRPS.
And I could go on. . .
Rheumatoid Arthritis is not “just arthritis,” by any means. It is completely life-altering.
Still, I am able to count myself among the very fortunate RA patients in that I have an amazingly supportive family who care for me so well, I have friends and a church community who check in on me often, my better half provides us excellent health coverage – which is (so unfairly) often all the difference in dealing with serious illness, and I am able to spend my days home with my family writing now.
Many many RA patients are not so fortunate.
So, for them, for me, for all of us, I will continue to speak up and just remind everyone that much more research is needed and there is a long way to go and we are all desperately praying for a cure.
And, most importantly, I want to remind everyone to keep your eyes open to people in your own lives who might be suffering and need some help.
Live in kindness and lend a hand whenever you can.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.