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.
Where 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!