When you get invited to a house party, what’s your first thought? Most will think it’s what kind of wine to bring, what kind of appetizer to bring for the group. Mine is wondering if they have a comfortable place to sit. Will everyone be sitting on couches in the living room, or will they be all standing at the kitchen island, laughing and chatting over that delicious wine and cheese? When you have a busy day at work and that evening, you’ve got your 4-year-old’s soccer game but you also need to go grocery shopping. The majority will think, “okay, busy day, let’s get ‘er done!” For me, it’s not that simple. I will always choose my son’s game of course, but it means that grocery shopping becomes grabbing a few items I need to make it to tomorrow, then doing a full shop tomorrow. Life with lupus is about making choices that most people wouldn’t even double-look at.
The Spoon Theory
Have you ever read this story? If not, click here to read it now. It’s the best analogy about someone living with a chronic illness, the best way to make people understand what it’s like. Essentially, the premise is that I start my day with twelve spoons. Everything I do uses up one of these spoons, and once I’m out, I’m done for the day. I wake up, and I frantically run around the house getting ready for my home daycare to open. This means getting my kids changed, fed, getting hubby’s food ready to take to work, scrambling to put away those last few toys that the kids dragged out a la last second, putting in that final load of dishes that I was too tired to do last night. Oh, and in the last 10 minutes, I gotta throw my hair up and get myself ready too. I’d say this takes two spoons. Every morning is a stressful mess, regardless of how much I’m able to clean the night before because let’s face it, I’m a crazy person who stresses about everything haha. I’ve got 10 spoons left. I chase around these six kids for 10 hours a day, playing, reading, dancing, cooking, cleaning…I’d say that’s about 6 spoons. I’ve got about 4 left. Once daycare is done, I’ve gotta get dinner on and hubby isn’t home from work yet, there’s a spoon. Get everyone fed and then we either head to the park or go play outside or downstairs, and I gotta clean up after dinner, there’s a spoon. Get the kids bathed and in bed, there’s a spoon. My last spoon can be spent either finishing up cleaning the house for the next day to do this all over again, or I can use it to do something for ME. I also need my sanity, which is why my mornings are chaotic because more often then not, I’ll let myself either slack off for the rest of the night because I’m just beat, or I work on something creative that brings me joy to cap off my night.
No one else I know has to think this way, and that’s the point of the spoon theory. To get those without a chronic illness to understand how important it is for us to make smart and healthy choices. Don’t get me wrong, even though I’m in a flare, I’m absolutely okay to make it through my day, I’m just extra beat by the end of it, more than a normal person haha but nonetheless, I do need to make choices that you wouldn’t think twice about.
So What The Hell is Lupus?
Okay so I could bore you with a bunch of scientific details about what Systemic Lupus Erythematosus is, or I could make it more fun for an intro here. I’ll be doing a few posts about what it actually is, but seriously. Basically, my body likes to eat itself. My body thinks my own cells are foreign invaders (like when you get influenza for example and your body attacks the virus to clear it out for you) and attack itself, thinking it’s helping. Well, you know what body You aren’t. You’re dumb.
When it attacks, basically we have no idea where it’s going to hit, how hard and how bad the damage will be. Kind of puts you on high alert, right?
Now for many lupus patients, this means presenting for the first time with severe medical crises like a heart attack, a stroke or kidney failure. Many have no idea what they have until it’s almost too late and they’re already in a critical stage that needs to be treated aggressively and immediately. I’m incredibly blessed that I had a gentle incoming to the disease, followed by five years of remission shortly after.
Live, Laugh, Love… and Lupus
I got diagnosed in May of 2012 after nearly passing out at my own wedding social (a Manitoba tradition, it’s essentially a fundraiser for your wedding!). It finally kicked my ass into gear to go see a doctor because I’d been having symptoms for quite some time and basically denied that anything was wrong with me against my better judgment.
About those stupid random attacks on our bodies, I described above? For myself, my body likes to eat the blood vessels of my legs. I get this “rash” called purpura. Essentially all those tiny little blood vessels that give the blood to your skin, making it nice and pink, get eaten by my dumbass body and they start to bleed. As they bleed, I get these tiny bright red dots all over them. They get bigger, they spread up my legs and really, anywhere in my body but usually, it decides to stay near my shins and calves. Thankfully there’s no pain, no itching or anything like that unless it progresses to vasculitis. This happens when I don’t take the hint and sit down and I keep on pushing myself. The vasculitis is where it gets very painful. The blood starts to pool in my legs, and I get these raised, large and hard nodules just under the skin. Basically, it looks like the wicked witch of the west when she melts and bubbles haha or at least it feels like that. The only thing that helps when it gets to this point is lying down with my legs up above the level of my heart. I swear I can feel the blood rushing back into my heart. I get chills, fever and I’m done for the day. That’s it, game over. Some of the worst ones I got wound up with me barely getting home from work and literally having to crawl on my knees to grab a drink of water because it was too painful to stand. This still wasn’t a wake-up call. That wedding social of mine that I nearly passed out at was terrifying and it absolutely made me realize I needed to get checked out… finally.
When I finally got to see a rheumatologist, they ran a crap ton of bloodwork. Pretty sure they took around 17 vials from me, and she asked me about a bazillion questions that seemed completely random, not connected in any way. It was the oddest set of questions I’ve ever had. Do you have a family history of autoimmune disease (okay that seems like normal history taking)? Do you have dry mouth or eyes? Are you tired a lot? But what kind of tired? How’s your poop? Do you have depression? You get the idea. It was weird. I asked her what they were testing for and how likely she believes I’ve got it and that’s when I first heard the word lupus in relation to me. My body. My dumbass body. My mind immediately went to that old show House haha. Solid show, but IT’S NEVER LUPUS….until it is!
As soon as I left that office, I got my butt down to chapters to try and find a book (honestly I prefer looking for a book over doing a Google search. Dr. Google is no good when it connects to so many bologna websites!). Tried to learn everything I can for it and I did find some good information about what kind of symptoms people have, prognosis, etc. but the fact is, they don’t really know why we have it. They don’t know much about it at all.
Why Am I Telling You All This Now?
I got diagnosed in May of 2012 and I actually achieved remission by the end of that year. Yes, I had a couple small flares over the last 5 years, but it was extremely well controlled and I wasn’t even on medication anymore. I had two beautiful, amazing little boys who are now 2- and 4-years-old and the light of my life. Little-by-little, I pushed myself harder and harder. I was doing too much, I wasn’t taking great care of myself anymore because everything I did was for my family. It started with a few red spots. Those few became a lot, they became those same hard nodules, I had a few days where I could barely make it through the day.
I am no longer in remission. I never expected it to last forever and I am blessed to have had five years with nary a symptom. The thing is, after having gone into remission so quickly after diagnosis and being almost free and clear for so long, I actually feel for the very first time that I am someone with a chronic and potentially dangerous illness. It’s the first time it’s really hitting hard for me and I’ll be honest in saying that I’m struggling emotionally about it. Now, I am a lupus warrior, and I will fight this with all of my beings. I am taking charge of my health by taking the meds I need, taking better care of myself, eating better and trying to cut out some of the junk: I’m doing what I can to get as close to remission again as I can.
I am determined to advocate for lupus patients, to tell my story and to raise awareness to the Disease of 1,000 Faces. We desperately need more research to find out why people like me are getting such a cruel and unusual disease. We have yet to not only find a cure for lupus but even find out what the hell it actually is and what causes it. There are so many questions around it left unanswered even though it’s way more common than you’d think! Did you know that 1 in 250 people have lupus, and even though it’s most often women, 10% of those are actually men? It’s not nearly as rare as people think.
What Can You Do?
Well, I have a few goals here. Of course, I would love for everyone to donate to Lupus Research, but not everyone is in that position. I want awareness for the disease and spread the word in order to raise those funds that are so desperately needed for research and a cure. I want other lupus warriors to join me on this journey to provide support for each other. This is a hard disease to live with because people either say, “well at least it’s not cancer,” or “but you don’t look sick.” We need the support of other warriors and those who understand our battle. If you have lupus (or any other chronic illness for that matter), I want to hear from you!
Like I talked about in my last post, I would like to focus some of my blog posts in the future about my health as well but I would love to hear what you’d like to read! A post about my story and journey? A post with tips and facts about lupus? Living healthy with a chronic disease? Recipes? Let me know!