Tired is an understatement

"I am NOT my diagnosis"

I would love to be a place in my life where I could say this, but I'm just not there right now. Sometimes, it all just gets to be overwhelming.

Y'all, I'm tired. I'm physically, mentally, and emotionally tired. On top of that, I'm in pain every dang day right now. Yes, I'm in PT, and yes, I stay active, but neither takes away the daily baseline pain. Currently, we are waiting for my body to adjust to a new dosage of my biologic. While we wait, my RA and HS have decided to run rampant throughout my body. If there is a joint in my body, it's inflamed. Oh, and apparently, when my RA is not fully under control, the biologic I take for my hives and dermatographia isn't able to work the best because my body is in a constant state of inflammation.

My RA Is like:

Wanna go for a drive? Here, let me give you some hip pain/inflammation, oh, and let's throw in some leg/foot numbness for fun too. 

Need to open that medicine bottle? Ha, that's funny...good try.

Your son wants a bowl of cereal? Yeah, better go grab the scissors because your hands are definitely not gonna be able to open the bag inside the box. 

Oh, you're tired...here, take a nap...how was that nap? You need to pee now? Oh, let me make it as hard as possible to bear weight on your knees. 

Yes...I'm throwing myself a pity party. Yes, eventually I will get over it and move on, but right now IT SUCKS. 

You know how frustrating it is as a mom to have your five-year-old say to you, "Here, Mom, you just lie down and take a nap...I know you need rest". Yes, she is a sweetheart, BUT no, it is not her job to take care of me. 

Despite all the frustrations and the whoa is me pity party, I fully recognize how blessed I am to be in a position to be able to visit multiple doctors when I need to. I'm grateful that my doctors (and my husband) have never consistently said "it's all in your head" to any of my health issues. Well, any of my physical health issues at least haha. I'm also grateful to finally have, what I hope to be, the last piece of my crazy health puzzle figured out. Even if I'm still "figuring" it out.

Now, let's get to the nitty-gritty of today's topic

Let's talk about the term warrior. Some of us like it and others don't. Personally, I don't like it. Because honestly, I don't feel like a warrior. I feel like someone playing wack-a-mole with a disease that doesn't know when to quit. Some days I feel great, like I can conquer the world. Other days, just getting out of bed is an extreme feat. I think for most of us, we feel like we are somewhere in the middle of that "warrior" spectrum, and that is okay. 

Calling us all warriors, can often feel like we are expected to CONSTANTLY be fighting, because warriors are literally defined as "a brave or experienced soldier/fighter". After dealing with HS for the last 26 years, I may be an experienced "soldier" but I definitely don't always feel brave. 

When we constantly have to put on a brave face and say that "we can do this", it gets overwhelming, and honestly, some days you just want to wallow in your pain.

And I'm here to tell you, THAT IS OKAY. HS and RA have taken so much from so many of us; it has taken jobs, sense of self-worth, self-reliance, financial security, and, for some, even the ability to advocate for ourselves. So no, I don't feel like a warrior, and I'm not afraid to admit it. 

I'm just a woman who has been fighting this God forsaken disease for 26 years and trying to keep my head above water. Some days are better than others. I go in and out of remission for my HS, and I'm blessed to have found a medical team that truly sees me. But that doesn't mean that in the back of my mind, I'm not worried about the next flare and how I explain to people that "today, this one broke me so I'm gonna sit here and cry, but tomorrow I'll get back up and get to working". 

We are not a monolith. Full stop.

We will fall in and out of the "warrior" category depending on the day. So I think for me, I prefer to say "I'm an HS fighter", because some days I will lose the battle, some days I will win, but I hope and pray that one day I will win the war. 

Okay. I think, given the current climate here, I should probably stop speaking the word "war" into the atmosphere.

So, I will end with this: be who you want to be. Call yourself what you want to call yourself. Choose to be a fighter that day or decide to stay cuddled up with your pillow named Max while you watch cheesy made-for-TV movies. Whatever you choose to do, know that it is 100% okay.