Life With Lupus: Me And My Rainbow Lupie Legs

Life With Lupus: Me And My Rainbow Lupie Legs

I’m about to do something I never thought I would do. I have always been a very self-conscious person. I don’t like pictures of myself, I’m selective in my clothing to make sure it’s flattering, I shy away if someone tries to give me a compliment, deflecting and changing the subject or laughing it off. I’ve come a long way.

wedding social bride and groomWhere it all began

In 2012, I was planning my wedding and working two jobs. I started noticing these odd red spots on my legs after I finished my shifts at the bookstore. I didn’t think much of it but it progressively got worse: more spots and starting to get pain. I ignored it, thinking it was just an odd random thing that would go away.

This picture is me and my future hubby, at our wedding social in May 2012. This is a Manitoba tradition to fundraise for your wedding. It was a VERY busy day, incredibly stressful and go-go-go for hours and hours on end. I wound up in the bathroom almost losing consciousness. The spots on my legs covered every inch, they were swollen up like balloons and I was so incredibly lightheaded, had chills and thought I would hurl. I might add, I didn’t have a single drink that night. It was time to go to the doctor.

My family doctor looked and said it was just petechiae and that I should try compression stockings to keep it under control. Let me tell ya….oh my god did they ever make it worse! It was like INSTANT pain when putting on the stockings, so I went back again. She did some research and referred me over to a rheumatologist. I had my first appointment in July and I was diagnosed with Systemic Lupus Erythematosus. They took a biopsy from one of the spots on my leg (BTW, I still have a hole where they took it lol) and it turns out that it’s called vasculitis and purpura.

Vasculitis + Purpura

Vasculitis is an inflammation of the blood vessels. It can affect any blood vessels in your body and can cause them to narrow, widen, weaken and scar. I’m incredibly lucky that my vasculitis is restricted to only my skin at the moment, but it can cause tissue and organ damage if left untreated. It can cause a wide array of symptoms including fever, fatigue, weight loss, night sweats, general aches and pains… overall, it just ain’t fun! The best symptom of all is the rash, known as purpura (in my case, though there are many different secondary conditions).

Purpura is essentially the bursting of blood vessels under the skin. It shows up as bright red spots that stay red even when you apply pressure to the area. They are not raised, they don’t itch, they’re just….essentially bruises. This is what they turn into. Bruises. So my legs are full of tiny little bruises, but SO MANY tiny little bruises that really, it looks like one giant ass bruise.

My Rainbow Lupie Legs

Now, this is where I promised I was being brave. This is a picture of what I now like to call my Rainbow Lupie Legs. The top images are from 2012 before my diagnosis, when I was terrified of seeing it because I had NO clue what was going on with my body. The right picture was taken September 14, 2018. Overall, it has gotten better but instead of getting it once, having it heal then maybe have another round in a few weeks, I’m getting it nearly every single day, just not quite in as large a coverage area. They now have bruises of all ages, all at different stages in the process while continuing to get more.

This is the reason why I need a seat. This is the reason I can’t stand in line at the store, at a park, waiting for a ride or even for my coffee. Anything more than 5 minutes of standing in the same spot, and these colours start to show up along with a long list of symptoms. The ONLY thing that stops it is putting my legs above the level of my heart. When I get my legs up, I swear I can FEEL the blood rushing back to my heart. It’s this really weird rush. I also get chills…fever…overall I feel like I have the flu for about 20 minutes until it starts to subside. My legs also feel tingly — not that pins and needles asleep — more like the nerve weakness before you get sick (unless that’s just another lupus thing, in which case, I have no clue how to describe it then haha).

Thankfully after about 20 minutes, I can get up and moving again. I need to be careful for the rest of the day, but at least it acts as a temporary reset button! Hopefully this reset button won’t disappear over time!

1 of 1,000 faces

I wanted to give you an insight to one of so many different symptoms that can happen with lupus. They call lupus the Disease of 1,000 Faces because it presents differently in every single person. This is my chief symptom, numero uno, the biggest one I need to deal with and while yes, it does affect my everyday life, it sure as hell beats major organ involvement. My heart goes out to all my fellow lupies who have to deal with more difficult symptoms than I have at the moment. Every day can be a struggle, but the support of my family and friends make all the difference!

Live, Laugh, Love…and Lupus

Live, Laugh, Love…and Lupus

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.

 


 

I'm not saying it's lupus... but it's lupus... or aliens

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.

 


lupus purpura vasculitisLive, 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!