The Monkeys Are Flying and the Elephants Are Loose

 

I'm not sure how I got here either.

Alrighty then, it's my circus? Yep, yes, it is. My very own, one of a kind three ring spectacle. Each diagnosis is a side show of its own. And those monkeys? Yeah, they’re absolutely mine. But let me offer this tidbit. I never signed up for any of this. I don't know how I got here either. I didn’t ask to be sick. I had no intent of living with one, two, three, oh heck. Let's just cut to the chase. Some people collect hobbies; I collect autoimmune diseases like a mutant.

I have no control over what my body does. I just keep debuting side effects like surprise character reveals. Be it hitting the floor like a brick, seeing bug like hallucinations or my skin turning purple on the regular circus life is a misunderstood, exiling and complicated life. 

Never in mt wildest dreams did I think of joining the circus. But here I am anyway. At almost 53 years old, my morning wakeup call involves herding flying monkeys, tripping over my own feet, keeping a straight face as havoc breaks free. Yep, it’s all fun and games until the elephant gets loose, huh?

Ok, so let’s be honest. My illness scares people. It may even frighten you. It’s the elephant in the room. Chronic illness isn’t a comfortable conversation. It’s why most spoonies, including myself, don’t like to talk about it. We dance around it. Personally, I rarely tell the world I’m in the hospital, or at home dehydrated and unable to get up and move around in the moment it’s happening. I might tell you afterwards but never really while I’m suffering. 

Why? I’ve learned my lesson. Stay placid, act untroubled, keep a straight face, your mouth shut and don’t disturb the peace. And that’s what I do. I don’t want to make life uncomfortable for anyone. Just know this...because I give you an honest answer doesn’t mean I'm asking you to carry my burden. I'm not. It’s mine to carry.

So don’t worry, if you ask me how I’m doing, the answer will always be “ok, I’m fine”.

I Never Auditioned for This Life, But Here I Am Running the Circus

 

Chronic illness, awkward reactions, and the fine art of saying "I'm fine."

So, let’s talk about the elephant in the room, shall we. I get it. How can one person have so many things going on at one time? Right? It doesn’t seem possible for anyone to be THAT sick. I hear you and I hear it all the time. Folks nod their heads as you explain but their faces read…she’s more like neuronic, than sick. Believe me, I’ve heard it all. Seen it all. And I live with people’s unpredictable clapback's daily.

Being chronically ill is tough enough. But being abundantly ill, well, it’s a whole other cup of tea.

Any illness is a lot to digest. Let alone wrap your head around. For me, I don’t talk a lot about it outside a small, trusted circle of friends and family. But when I do, or when I’m asked, “Hey how ya feeling today?” It’s just easier to say “fine”. That or face the eye roll. I think illness is uncomfortable. It's simpler to ignore it all together or say it’s impossible and call phooey.

Now I could get catty. React. Tell folks off. Ask who has a medical degree or if they’re practicing medicine? I could be snarky. I could and feel justified. But what good does that do anyone? it doesn't. It just makes it more awkward. So, I choose to stay quiet. Smile, mind my own business and keep my mouth shut.

Almost 45 years after my first diagnosis, I’ve come to learn people mean well, mostly anyway. 

So, the question now is, is this my circus? 

Apparently, I'm not in the "Too Young for This" Club

 

Wait! What? Seriously? A heart attack. No way. Not at my age. I'm in the "Too young for this club", right? I mean I’m only 52 ya’ll. I realize I’ve joined the half a century society at this point, and I have an active AARP membership, but come on. A STEMI? How in the heck?

Well, remember what I said about not slowing down? Turns out my body had been trying to tell me something for a year. Hardheaded much? Yes siree. That would be me. All that extra stress I hadn’t been dealing with combined with anxiety, pushing myself, not saying no, being distracted and decades of active vasculitis caught up with me. And in a big way too.

Even the signs of a heart attack weren’t enough to coax me into checking in with my doctors. I was certain I was fine, took some extra tums and went to bed. Chest pain, na, nothing to worry about. Pressure building up. Just gas, right? Oh, and that pain down the left arm? Nothing to think twice on. Just fibromyalgia. 

We all know at this point how that worked out, right? It doesn’t take a rocket scientist to figure what came next. I woke up in the middle of the night nauseous, headache off the charts, BP up and the pain getting worse. The telltale sign something was definitely wrong. My elbow felt like it was going to literally explode off my arm.

Talk about a hallelujah come to Jesus' moment. This was absolutely mine. 

I actually beat Johnny to the vehicle. Which was a first. I’m usually dragging my feet and protesting all the way to the ER. I was out of the SUV and walking through the doors before Johnny unbuckled his seat belt.  It felt urgent. As if life was fleeting quickly. I don't know how exactly how to explain the feeling or sensation, but it felt pressing. I’m sure my anxiety had something to do with that but nonetheless, there I was. 

Three quick ECG’s later, nurses rushing in and out, the shoe dropped. I was in the middle of a heart attack. They gave me pain meds, started an IV, drew blood, ordered a CT, gave me heparin and proceeded with more testing. Next thing I knew I was in the back of an ambulance, tears running down my face, thanking the paramedics, smiling through it and heading to the main hospital.  

Not my idea of a Sunday funday to say the least. But there I was. Heading into the cath lab. I called my son, my parents and held onto Johnny's hand pretty tightly before they wheeled me into the coldest, arctic blasting air-conditioned room in the hospital. It’s always the unexpected with me, seriously, nothing ever goes as planned. And no, I never do anything by the book. Where’s the fun in that? But I did emerge a few hours later, gratefully alive, groggy, doped up, with a stent and starting a new chapter in life. Oh yeah, I made sure to ask the surgeon if I’d still be able to make it to Disneyland for our 30th anniversary. Heart failure? Not great, but come on, is this really getting between me and Disney?

Out of Spoons, But I Swear I'm Okay

Hi. My name is Christina. I'm a spoonie. Otherwise known to be chronically ill, juggling multi-autoimmune diseases. Further entangled by anxiety. I live my life out of spoons, swearing I'm OK. I don't look sick, so why should anyone know I am right? I tend, but really, I don't mean to aggravate my 10 plus doctors and specialists with what they call persistent determination. But I know the truth. I'm obstinate and stubborn. And I complicate my symptoms by ignoring them. 

I know, I hear you. I get it. Believe me. My pulmonologist calls me a road runner. He insists I need to slow down. He told me during our last visit to pick 2 tasks, not 10 and complete only those. He was also very clear... be more deliberate and intentional with my time.  He's not wrong. It's just not something I'm good at to be honest. I hide behind this mask, insisting I'm not sick, knowing full well I am. It's a lesson I had to learn the hard way in 2025.

Not to be dramatic, but you'd think after almost dying in November 2024, I'd have figured it out already. My doctors thought so too. Instead, I went back to work, kept pushing myself, traveling and ignoring how fatigued I was. I mean dangerously high blood calcium levels over 17 plus had to be a fluke, right? Sure, I was in ICU for almost a week. I had no muscle control, I couldn't walk, hold a phone or form a sentence. I was unable to eat, and I suffered kidney injury and shock. But I wasn't going to let that stop me. You guessed it. I told myself against my doctors and family's better judgment, I was fine. Ok even. I could handle this. So yes, I still left for Disneyworld five days later.

After that, pretty much all of 2025 became a game of what's behind door number 1, 2, 3 etc. I actually made my personal out of pocket by mid-February. Then between imaging, appointments and constant labs I finished up the school year. I helped my folks over the summer and rested as much as possible. I did pay attention when my abdomen swelled up like I was 6 months pregnant. No, I didn't dismiss my anxiety when it got worse. I learned to breathe through nightly panic attacks in my sleep. I really tried to pay attention more to my body. I just wasn't ready to admit my body was completely failing me already. But it was and in a big way. I just didn't see it coming. 

So, yes I was completely blindsided when my body and this crazy ANCA Positive/Systemic/MPO refractory vasculitis sprung their master plans on me. Plans that went beyond any of the known organs diagnosed already. Then on the night of November 15, 2024, I had a major heart attack.