lupus sucks.

So far this week, I have had three doctors tell me they have never seen any other patient with the type of rash I have. Believe it or not, this is not the first week I’ve had doctors tell me that. I had doctors at both Northwestern University and Mayo Clinic tell me I was a rarity and they had never seen anything like me before. So much of a rarity, I signed away photos of my skin to be posted in both their textbooks and publications. #handfamous

It’s crazy how much of our body we take for granted until we can’t use it anymore. Clench your hand in a fist. No seriously, right now as you are reading this, make a fist. Easy right? For two weeks now, I have not been able to bend my fingers in and make a fist. Try doing a ponytail without bending your fingers! 

I currently am covered in a boil-like rash, head to toe, no exaggeration. It’s on my eyelids, my nostrils, lips, neck, and all the way down to my toes. I feel like a swollen marshmallow that’s a little burnt on the ends. Lupus sucks. 

It’s hard to explain the fatigue that haunts Lupus patients. The fatigue I have felt is the worst it’s been since I was first diagnosed with Lupus, eight years ago. I’ve been taking multiple naps a day and sleeping about 12 hours a night. Thrilling right?

A couple of months ago, in preparation for National Lupus Day (I treat Lupus Day like a treat yo self day, this year, I’m getting Cookie Cottage. If you know, you know.), I wrote a light hearted, cheery post about how well I’ve been doing and all the good things I’ve been doing for my health this last year. It’s funny how our bodies are very much in control and things can change instantly, even when we are doing everything right. 

It’s been a rough last month and a half. Back in March, I had a second surgery to remove a long chain of cysts behind my breast, against my lung wall. Fortunately, no cancer was found but the medical providers suspect Lupus to have caused the inflamed cysts. And just when I finally started feeling better post surgery, insert burnt marshmallow. 

Do I say all of this to make you feel bad for me? Absolutely not! I think it’s extremely important to be honest and vulnerable about diseases that aren’t always visible. Lupus needs more attention in our medical world and this is one of my small attempts. 

Sometimes when I am sad, I stalk myself on Instagram. Of course the gram is a highlight reel but the highlights bring me joy. I came across a photo I posted on New Years Day this year and in the caption I explained how 2020 was a hard year for everyone but I learned to plan less and hope more. Of course I said that on a day I was feeling great and full excitement for the adventures that were to come in 2021. Little did I know what the winter and spring held for me. 

I used to think I would always live in California, guess what? That didn’t happen. Just when I got comfortable, the new job offer came and we moved back to Indiana. Plan less. Hope more. Then I thought I would build a house and get really fit and have lots of energy. Just when the house got built and I could finally run a 5k, I was struck down with the worst Lupus episode I have had in several years. Plan less. Hope more. 

In parallel to planning less and hoping more, I’m working on choosing joy despite feeling the way I do. It’s been over eight years since I was diagnosed with Lupus. Eight years of unanswered questions and “I don’t knows.” I’m learning that it’s okay to be selfish for joy. When you have Lupus, you know that you are going to go to sleep and wake up in pain the next morning. You are going to wake up feeling like you have not slept at all. Enter joy. Each day, I try to have one thing to look forward to, sometimes it’s a cup of coffee, walking the dog, or dinner with Logan. Most days, it’s nothing crazy, but having those small amounts of joy throughout your day makes a world of a difference. I am choosing to believe that I am not broken, and that for some reason, I am going through all of this. My hope is that by me sharing my thoughts, feelings, and stories, that I am able to help someone else.

I absolutely refuse to let my health stop me. When I can finally bend my hands in a fist again, I’m going to punch Lupus right in the gut. And then in the face.

Plan less. Hope more.