Rheumatoid Arthritis, that's the old lady problem right? You know the one, where the old lady is all tangled up in her own fingers and angry in pain? The one we dismiss as "a bummer" and go on our way never to think of again. Ya, well welcome to your journey into it...with me.
I have to admit that the diagnosis itself feels like a sentence to becoming the villain in a Disney movie. I immediately saw myself needing to invest in a basket full of temptingly red apples. Turns out it is more complex than that. Did you know that there are different types of arthritis??? I didn't. Ahh to be young and blissfully unaware. Well, turns out you can get the regular kind or you can get the autoimmune disease shit-ass kind. Guess which kind I have?!? Ya, I'm starting to think my body is trying to off me too. So what is this bullshit kind I have? It is when the body turns on itself and in this case, attacks the joints. Wow, you say to yourself, what is that like? Well...it is unlike other pain I have had. It isn't like the pain of an injury or the bone crushing pain I had all over my body with the brain tumor. It also is not like the alien feeling of pain that comes with growing a child in your body or giving birth. It is a whole new weird, inescapable feeling.
You have to be thinking, since this is what I thought, being young, catching it early, means not much to deal with. Nope. As my specialist decreed "this is severe and moving fast" , greeeeeaaaatttt.
It started in the Spring of 2020, I'd just gotten back from NYC and fallen ill, maybe it was covid, maybe it was not, any which way, I was ill in a way I'd never experienced before and it was just as the lockdown hit our state. As I recovered, we all tried to find a new normal trapped in our home with nothing but our strange thoughts. Being suddenly aware of all the weird things in our small environment, I attributed some joint pain to simply getting old and a sudden awareness to anything and everything, almost like a form of entertainment. I even thought maybe it was that I wasn't getting enough exercise, that I seemed to be in atrophy. Then time to time, my left hand started to bother me, the knuckles grew sore. Before I knew it, my wrist hurt too. Then more knuckles, my elbow, my other hand... I continued to ignore it, after all we had far bigger fish to fry as our worlds seemed to implode with the stress of covid. Then, one day as I unloaded the dishwasher, chatting with my daughter, my hand and forearm seized in pain and contorted into unnatural positions. It startled us both, the intensity of my shriek, the oddness of the behavior and then it was over. We stared at each other and she asked "what was that?!?" I mirrored her awe back to her and shook my head. My mind immediately went to 'ahhh shit, was that a stroke?', but everything else felt fine, I seemed ok, so of course I dumped it from my brain... until it happened again. Well...actually I did alert my husband to the next time it happened, but to tell the truth what got me to call the doctor was when I couldn't open a bottle of wine on my own. Clearly I was in trouble. My left wrist and hand wouldn't brace the bottle tight enough to be a stabilizer for my right hand to maneuver the corkscrew, it was absolutely terrifying. Images of a fate worse than death flashed before my eyes, what if I was going to have to wait until Jesse got home from work each day before I could have my 1st glass of wine...and during covid! Shrieks of horror echoed across the valley that day.
Fast forward a few months and the RA has gotten worse, quickly. All the joints in my left hand hurt, every single one. My left wrist and elbow are some of the worst joints in my body. My left shoulder, both knees, ankles, toes, right hand knuckles in my pointer and pinky, wrist and shoulder also hurt, but not as bad as the left. Often the issue is that the joint feels like it has been sedated. Like my wrist, for example, took a couple Vicodin with a vodka shot and is out for the night, it simply refuses to respond. Other times it is a severe pain originating inside and burrowing its way out. It is more like the center of a joint has exploded and caused the bone to splinter. Those splinters are now shoved into the nearby bones; like a hangnail ripped back into the cuticle or thick sharp piece of wood jammed under your nail bed. Believe it or not, this is not as bad as the pain associated with a brain tumor so clearly I'm still WINNING.
I am taking various drugs to try to hold the progression, some to give me some peace from the pain, but nothing seems to help much. The usual drugs that help most people with RA are not an option due to my brain tumor issues so we have had to be creative. My doctor wants to "hit it hard with 3-6 months of chemo" in the hopes that that can be like a system reset for the autoimmune disease and then we can maintain some amount of health after that. I'm all for it. So why isn't that what I am doing right now? Why am I gallivanting all over Mexico during a pandemic? What am I crazy?!? Well, that part is complicated.
As a mom, we sacrifice... and go a little crazy. From the moment you become pregnant, everything about your body, your life, your emotions...they all get a dose of 'what's good for the baby' and it doesn't let up, even when they become teenagers, or as my mom would say, adults too. This year has been difficult for so many of us, and when it hits your child, you become obsessed with fixing it. Depression is tricky, it can sneak up on you and tear you down. Over the years I've battled with it from light to severe, as you can imagine due to Cushings I had to write a will for an eminent surgery that could result in death, blindness, loss of smell (maybe the worst for me considering my career) or a brain fluid leak that would create horrific debilitating headaches... all while your child watches you disintegrate, can create a deep depression. I will be honest and share that I've been on an antidepressant for about 6 years. I have tried to wean off (always with my doctor's assistance) and then had to increase again. I've had loss and deeply disturbing life experiences that resulted in a need to go back up in dose. So, when my child started to plummet, I knew we needed to act swiftly and my husband saw it too. Perhaps the best way to impress upon you the serious nature of which I speak is that when discussing the need to travel, change locations and have a brain reset for my family, my doctor got it. She has a teenage daughter as well and we held hands, in a covid safe way, in her office, leveled to just two women knowing the unsettling deep love, fear and craziness of being a mom, and we cried together.
And so here we are, soaking in the sunshine of Mexico, lapping up the delights of the cuisine and relaxing deeply. It is clear it has been helpful, as smiles reappear, and it may be just a band-aid, but we are trying to continue therapy sessions and a healthy evolution toward staying afloat. Yes, I hurt all the time, but my heart, the one that walks around outside my body, has started to heal and that is all I can see. So pour me some mescal, open me a beer and fill my glass with wine because regardless of the shit-show that your life is, and no matter how crazy things get, Wine First.
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