Girl Gone Off: Now is a good time to talk about it

Adirondack Mountains. Photo owned by GGS.

This photo is a pretty good representation of my brain when I'm in a flare, and fatigue and brain fog are major symptoms of Rheumatoid Arthritis (RA). But I'm very tired (literally) of the word arthritis being the key takeaway of the disease from those who do not understand the full scope of living with it.

February 2nd is Rheumatoid Disease Awareness Day so it's important for me to do my part in putting a face to what people believe is just an 'older person's disease.' It's not. It's really not. I wrote about my fear, and the reality, of this administration taking away protections for those with pre-existing conditions (the lawsuit is still going on, folks) in a previous blog. The fear is still real. But while there isn't much I can do aside from voting with my heart and conscience, I am able to share my experience in hopes more people will understand, and be more understanding, of those who suffer with this disease.

The arthritis in your knee, elbow, or back from an old sports injury is not the same as RA, and if you learn anything from this post, please let it be that. But also know pain is subjective and it's not a competition. This is a lesson I had to learn myself and it was a difficult one. I would sometimes find myself rolling my eyes at a person who complained of a herniated disc, or had only one spinal fusion, or talked of knee pain because they played hockey or soccer in high school for four years. The thing is, pain is pain. As ridiculously simplified as that sounds, everyone has their own. All we need to do as friends is sympathize, be gentle with our remarks, and be understanding of changing plans.

Arthritis is just one symptom.

Most people are aware that RA is associated with pain, but the lesser known symptoms of fatigue and brain fog are what really get me - especially lately. I booked a hotel room for the wrong night. I showed up for an ultrasound this morning at 7:15am in Latham and my appointment is actually this coming Friday. I've forgotten to make important phone calls. I've forgotten to pay bills. I've forgotten my words right in the middle of a sentence. And that's just the fog.

The fatigue is hell. I would exchange a boat-load of pain in order to simply have the ability to lift my head off a pillow, to step into the shower, to comb my hair, to make myself something to eat... It's debilitating, and no amount of caffeine or exercise or any drug can stop it or ease it once it starts. It has to work its way through. Like a lot of auto-immune diseases, stress is a major trigger and both my hometown and my family know that we've had our share of grief and stress lately. It's inevitable for a body like mine to shut down and tell me it's time to rest. I try to listen, and I'm getting better at hearing.

On February 2nd, I hope you will take a moment to do a bit of research, maybe reach out to a friend who suffers, or maybe even make a small donation to the much needed research associated with this disease. Here are a few resources, if you're so inclined.

I would like to say a special thank you to two friends who have been so unbelievably patient and understanding with me lately. I'm not going to call you out publicly, but I'm grateful you 'get me' and that you've taken the time to research on your own. That meant a lot.

#rheum #curearthritis #girlgoneoff #ra #autoimmune #girlgonesmart