I think one of the best things I’ve found out about life is that as writer, sometimes you write less about your life, when you are so busy just living and enjoying it, that you have less time to reflect on it all. Reflection is for the fall, when things slow down, when the leaves tumble and get crunchy and all the green goes into a faded gold.
With that fading comes the thoughtful musing in the chilly air. I do this over hot chocolate or a shot of whiskey. Now is the time of reckoning, part of me examining my own reflection created by the last six months, all while staring at the blank digital paper on my computer screen. It waits for what I will put there, what I will share with you.
This is harder than I expected. I’ve mulled over sharing this for six months, thinking over the pros, the cons and the whys. In the end, there is no real reason to talk about what happened to me this summer, except that I have always been honest about my trials and tribulations, and now I find myself in the quagmire of something new.
What I finally came to is this: I tend to write things that I feel others can relate to, with the end goal being that no one ever feel alone in their struggles. The problem was that what I am dealing with is rare and not many people can relate to it, so why even bring it up?
Yet, here I am, six months into it and as the months have passed and I’ve done more research into this crap, I have found that I was wrong. What I’m dealing with is something rare but super universal and it is something that many people deal with, every single day, and the battle is vicious and allies are a must.
The battle is this: the invisible illness.
It’s where you look perfectly fine on the outside, but on the inside, you’re breaking into little pieces and people look at you like you’re crazy if you say that you can’t do something because for fuck’s sake—you look fine.
Suddenly, they look at you like you’re a faker or a hypochondriac. Because you look fine.
I think this is maybe what has pushed me to finally lay it all out on the table, because the ridiculous amount of reactions that I’ve had to deal with have run from okay to completely absurd. And that’s just from telling a mere handful of people. There have been days where I’ve had to just shake my head and go back to bed and to sleep, because I get so frustrated that being awake makes me want to set shit on fire.
At first, I thought I was just getting old. Yes, you can laugh. I find it kind of funny that I was more convinced that I was just aging quickly, as opposed to paying attention to the fact that I should not be walking around like I was ninety, while still in my forties.
Now that I know what I’m dealing with, I can look back and see that the earliest symptoms started showing up about ten years ago. I was still waiting tables but after a day of work, I would come home unable to walk. My feet felt like someone had smashed all the bones in them with a sledgehammer and so I’d go right to the couch, understanding that once I sat down, I would not be able to get up again for hours.
But you know, that happens in your forties, right? Getting old. I told myself that I was just getting old and weak. It seems kinda gross to me, now, that I was so quick to just put all the blame on myself for being “weaker” than the average person, than understanding that something else might be up. I guess I’ve always been my own harshest critic.
What confused me was that most of the time, I felt fine. Once I recuperated, I felt normal and went about my life. The crushed feet thing happened only if I had to be on my feet for hours, running around. This aching, broken-bone feeling would sometimes spread to my hands and wrists and sometimes my legs. I took Advil and ignored it.
As the years passed, many things occurred to obscure these moments—new jobs, a job sitting down for four years, moving houses and states. Other problems—kidney issues, gal bladder removal, and a couple more surgeries showed up in those years to just make me feel miserable all the time--so things like tired feet seemed like just complaining, instead of an actual something I should pay attention to.
Then I was out of work for an entire year so I was not running around doing anything. All these big life events happened that sort of pushed all health stuff aside—a divorce, pressure to find a new job and on and on. It was easy to not pay attention to how many times I had to go to bed, exhausted and in pain.
When I started to notice the symptoms, again, was when I found a great job and got much, much healthier. I was working out every week and my job was a physically active one that was not over the top hard and just enough running up and down staircases to keep me from being sedentary.
Yet instead of feeling better, I started feeling worse. This was where I began to connect the dots a bit, started to suspect that getting healthier and more fit should not make me feel worse. I’d work a shift and go home feeling like I’d been run over by a garbage truck. The only thing that made me feel a little better and not so stiff in my joints was swimming or something mild like a yoga class.
In fact, the moment I would get home from an eight-hour shift at work, I would fall asleep and sleep for two to three hours, unable to keep my eyes open, even though I had slept about seven or eight hours the night before. I just blamed it on being a night owl and staying up late.
At work, I had to sit down for five or ten minute breaks about once an hour or I’d start that old-lady crippled walk where I was chugging Advil and hanging onto the stairway railing to get up or down the stairs.
The bone pain got worse. Now, when I slept, I’d wake up in the middle of the night or in the morning feeling like a steam roller had rolled over me in the night, breaking all my bones or I’d feel like I’d been sleeping on a cement slab and feel bruised and achy. Sometimes it felt like my thigh bones were on fire, deep inside the bones and the pain would wake me up in the middle of the night. No position I could get in would make the pain go away. Then my chest started hurting, all the time, in waves, sometimes achy, sometimes sharp—for three years.
I’m not stupid. Yes. The chest pain concerned me. My nurse-sister was also freaked out by it. She made me start taking baby aspirin all the time. I had EKG’s done, and a heart stress test and watched for all the signs of a female heart attack—but every single time, the heart tests said my heart was strong and doing great.
The final sign was that people would sometimes tell me how red my face was. That was the most baffling symptom of all. I thought…maybe I am just getting overheated because my blood pressure has been high? Maybe drinking a shot of whiskey makes my face more red than most people, just because I’m…you know…GETTING OLD.
When I moved to Taos for the summer, when all the demands on my time shrank down to nothing, I decided it was time to put a name to whatever it was that was dragging me down, to find a way to maybe treat it, because it was pissing me off. I had started to understand that nobody, no matter how old they are, wakes up with their hip and thigh bones on fire unless there is something fucking wrong. Nobody has chest pain every single day unless something is fucking wrong. It was like slapping my own face. I had to yell at myself to stop being in denial and just figure it the fuck out and deal with it. Putting my head in the sand was stupid.
Because at that point, like most people with weird symptoms, I had been googling the crap out of my symptoms and of course, like most people, the results of my symptoms were always either just nothing--or I was dying of something gruesome. It’s so pointless to look that crap up.
Well except for one thing. The red face thing. One night, while stumbling through the online list of possible horrors I could be dealing with, I found a picture. It was a drawing of a symptom of people who have a disease called Lupus. The woman in the drawing had a red rash going across the bridge of her nose, over to both cheeks, like butterfly wings. It could almost pass for just rosy cheeks.
I ran to the bathroom and turned on the bright lights and looked at my face, free of makeup and suddenly I saw it, like a red ghost. It was more subtle than the picture on the website, but sure as hell, I had a red butterfly glow on my cheeks, one that crossed over the bridge of my nose—something not easily seen with make up on. Something easily lost in sunshine as just a rosy glow or something not easy to see in low light.
Stunned, I went back to re-look at all the Lupus symptoms. Unexplained chest pain. Check. Pain and swelling in joints and bones. Check. Butterfly rash. Check. Fatigue. Can we say three hour naps, anyone? Check. I went to the doctor but I guess I already knew. I could check off at least three or four more symptoms on that Lupus list, in addition to the ones I just mentioned, that had been bugging me over the last three years. Check and mother-fucking check.
Most of the tests, when testing for Lupus, are tests to prove what it’s not—not arthritis, not ten other kinds of syndromes, not issues related to thyroid or cancer, etc. It took an entire month to get through it all. There were blood tests and urine tests and xrays. Then more blood tests. Eye tests for medicine related issues. Sleep tests for the high blood pressure. I got really sick of seeing my doctor, even though he’s wonderful and the best doctor in the world.
And once it was all said and done, back in June, my very smart, very nice doctor looked sad and he said that he was sorry to have to give me bad news, but that yes, I had tested in the medium-high positive range for Lupus.
Well, fuck. Sometimes it’s good to have a name for random symptoms you’ve been dealing with for three or more years, you know? On the other hand, there’s this whole new level of grappling with what can be done, what needs to be done and what kind of self-care I need to start paying attention to.
I won’t even go into how I’m supposed to see a specialist called a Rheumatologist and all the ones in New Mexico are booked up for a solid year and won’t even put me on a cancellation list. Or how the medicine they want to treat my Lupus with can cause people to go blind if you’re on it for too long.
It’s some fucked-up shit. I tend not to rant about these things, but I do allow my language to get a bit more colorful because fucking-fuck.
The reactions of a few friends and family to the news about me having Lupus have been hilarious--things like, a couple of people telling me to just pray it away. I get where they are coming from, them and faith and the crossover of visualization and all, but I sometimes wonder if Christians don’t wonder why the omniscient God they pray to may have given them the disease in the first place?
Wouldn’t it be a sort of spiritual treason to just wish away what God throws at them? I refer them to the old bible story of Job, when I get that line of thought. I tell them what if God and Satan took out a bet on my life? Who am I to tap out and spoil their game?
Anyway. I don’t have that sort of relationship with any God or Devil, Christian or otherwise. I think my job in this life is to take what I’m given and turn it into lemonade. Or feel sorry for myself and do nothing. In the end, I don’t think it matters what I do with it. It’s my life. I just tend to be one of those people that doesn’t get dramatic about very many things. “Oh look, now it’s time to deal with Lupus. How interesting.”
Then, of course, there’s the ever popular, but you look fine! Those are the people I’d like to slug repeatedly in the chest with cement-filled gloves, and then make them work an eight-hour shift in that state, just to see how they handle it. But that’s just me being bitchy. I’ve been a bitch for a long time, now.
Suggestions to cure Lupus have been everything from acupuncture to just eat a different diet and you’ll fix yourself. I’m not ashamed to say that mostly, I just smile sweetly and say nothing to these sorts of suggestions. In fact, I’ve discovered that amazon.com has an entire Lupus link devoted to things they want to sell me to show how much they support Lupus people. I could buy trendy bracelets and necklaces that announce how sick, but still strong, I am. I can buy dozens of books on the subject that range from Lupus encyclopedias to some woman telling me how she dieted her Lupus away. Seems I have to give her thirty bucks to find out what she ate.
That’s all great, except everything I’ve read says Lupus is mercurial and that sometimes, this shit actually does just go away on its own. And sometimes it lasts forever, no matter what you do. Sometimes it even kills people. There are three different kinds, one being a variation that shows up due to certain high blood pressure medications. I found it hilarious that they said if you go off the meds, you can maybe cure yourself IF it’s that type. On the other hand, if you go off your blood pressure meds, you’re probably going to stroke-out and die. Oops.
One of the funniest reactions I get, that a lot of people jumped immediately onto, was the whole idea that --“Omg, dude, you qualify for a medical marijuana card, now! Doooo eeeeeet!”
And it’s true. Lupus is sometimes treated with pot, due to the joint inflammation and pain. I’ll admit that I’ve enjoyed the occasional bowl in my time, but while my doctor and I were busy treating the symptoms I’m dealing with, my blood pressure medicine level had to go way up to bring my blood pressure back to acceptable levels, which means that now if I have one hit off a pipe, or more than two alcoholic drinks, my head hits the floor and I can’t get back up.
That’s not to say I’m not exploring all my non-big-pharma options, but being unconscious doesn’t really help me have a life. I have to sleep enough, now, as it is.
A lot of people say they once heard of someone or knew someone, a long time ago, who had Lupus but they don’t know anything about it. Which is fair. I had no idea what it was, either.
Reading up on it helped a lot. It sounds scary, at first, but it’s not that scary. It’s sort of a magical disease, like something you only get in a dark fairy tale. For instance, I can’t go out in the sun without million-level sunscreen on because evidently, it’s a lot like being under a curse where I am now a creature of the night.
Oh wait. I always have been. Maybe that’s lucky for me because according to most sites, the sun can now destroy my skin, the largest organ I have, so it’s good to become Snow White if I don’t want to risk looking like a leprosy victim. I read that the singer Seal has Lupus and the scars on his face were caused by his disease.
And do yourself a favor, never google-image Lupus. You won’t sleep with the gross and terrifying things you’ll see that sun can do to skin. The first time I saw that stuff, I never wanted to leave my house again. I don’t want to have to walk around with a black veil over my face, someday, just so I don’t scare little children because I thought getting a tan would be a good idea.
People used to die of Lupus, and I guess they sometimes still do, but generally only from complications due to Lupus. It’s like a lot of diseases these days—you can live a long and happy life with Lupus. Right now, there’s no known cure but the medicine to treat symptoms and prevent organ failure has gotten a lot better. It’s classified as an autoimmune disease, but where HIV is an underactive immune system, Lupus is an overactive immune system, attacking itself.
There’s a lot more I could tell you about Lupus but I’ll just include some links here if you want to know more about it.
My sister and I have renamed my Lupus to—fruit loops—as in, I tell her my fruit loops are acting up this week and we both laugh. Laughing feels good. It’s healing. And I’m grateful that I now have a chance to learn about the world of the magical, invisible illnesses, a chance to become a defender of those who share my ensorcelled condition, who fight the brave fight every single day, while being told that they look just fine.
Well we do look fine, thank you--we even look damn good a lot of the time…even if we need more naps than most people and have an intimate relationship with our television for those days when we need to go back to bed.
In fact, I think I’m going to stop calling the glow on my face a butterfly rash and change it to the mark of a dragon. Now it’s a dragon spreading its wings across my face, marking me as one of their own, in a beautiful, red glow--to warn those around me that my roar is fierce, and I will not hesitate to use my claws and my teeth to defend my invisibly-challenged friends.