When My Lupus Is Being a 'Jerk'

I love those Monday mornings when you wake up to a new week that is wide open with no doctor’s appointments.

The possibilities seem endless! What will you do with your time when there’s nothing to schedule regular life around? The kids will be able to get to practices with no problem. You won’t have to hunt down rides for them three days out of the week. You’ll have a little time to catch your breath, and just enjoy that you aren’t waiting for answers on some test, sitting in a waiting room, or running from one appointment to the next.

Then by Tuesday afternoon…Surprise! You suddenly have a biopsy, a new appointment with a new “ologist,” and a bunch of lab work you for something that literally popped up overnight.

What is that?

Oh. Lupus.

Because lupus is a jerk like that. It has no respect for my personal space and schedule. And no matter how many times I yell, “I don’t have time for this mess right now!” It’s like, “Oh well…better cut back in some other area because here I am. Find a ride for those kids.”

Last week I woke up with a hole in the roof of my mouth. An actual hole. In the roof of my mouth. Which hurt, but which also made me roll my eyes and yell, “Really?!” Could I please just get something typical, like a sore throat or a cough? Not that I want a sore throat or a cough. But, I had made it exactly two and a half weeks without going to a doctor. A record of sorts.

Lupus is a jerk.

I rolled my eyes because I knew exactly where this new and random hole was going to land me – right in the dermatologist office. I was scheduled immediately with lab work, a new ENT and a biopsy, in case it was discoid lupus trying to eat away the top of my mouth.

Don’t worry…I scheduled rides to practice for the kids.

I used to hate this disease because of what it meant for me with all the lifestyle changes and treatments. I hated all the pills, all the needle sticks, having to change around my whole lifestyle to accommodate my need for no UV exposure, and making plans for when meds were going to make me sick. I mourned for the old me who got to swim in the pool with my kids, get a tan, and didn’t have to worry about what kind of damage I was doing to my body by just being outside. I wanted to go back to being a healthy person instead of a patient.

Lupus is a jerk.

I’ve gotten used to most of the lifestyle changes in the four years since my diagnosis. One area remains a problem for me though: It’s hard to find the line between “patient” and “person.”

The blurring of this line is the most maddening aspect of lupus for me. I know the way I want my husband to view me. I know the way I want my kids to view me. I know the way I want to view me. It’s awfully hard to get in that “person” mindset when you constantly find yourself being the patient.

Being a patient just eats into every part of life and there is no stopping it. I may suddenly get sick and become unreliable. Sometimes I have unexpected appointments and become unreliable. Sometimes I wake up with a random hole in the top of my mouth and have to drop everything to take care of it.

Unreliable.

It feels like there is always something, and it’s impossible to anticipate because it is never the same thing. From my family’s perspective, “unreliable” is probably a poor choice of words because I know they don’t view me that way. But, it is the way I feel when my expectations of a week are thrown out a window because lupus gave me a curveball again.

Lupus is a jerk.

I’ve had people tell me, “Don’t let lupus define you…You define lupus!” This statement sounds so inspirational (it’s not) that I probably even repeated it to myself when I was first diagnosed. That didn’t last long.

I would love to “define” lupus. I’d pack that sucker so tightly in it’s little lupus box that it would never escape. Especially during soccer and lacrosse season. If I could define lupus, I’d define it right into my lifestyle and you’d find me at the beach. But, the reality is that lupus pretty much dictates how things are going to go for me. It just comes in and wreaks havoc on everything I had plans for and it doesn’t even ask my opinion first. And its stupid definitions change so much that I don’t even get a chance to learn them. I don’t get a lot of say in things. If I did, I’d certainly work it into a week where the kids didn’t have practices.

On the flip side, I am working on the new definitions for myself. I am both patient and person. That definition just comes together wrapped in a giant lupus bow. I don’t have to like the patient part. If I could get rid of it, I would do it in a heartbeat. But I do like the way it has shaped the rest of me.

I like that I am more patient with my kids. I let the little things go more, and I laugh at them more readily than I ever did before lupus. Yet, I hate that I get frustrated and overwhelmed, and then lose my cool because I feel like I cannot deal with one more thing.

In contrast, I appreciate the days that I can take care of my family the way I want to. I view my husband in a different way because I know exactly what lengths he will go to in order to take care of me. I love knowing that about him. But, I hate that he has to think about things like that in the first place, and I don’t ever want him to see me as “sick.”

I miss being able to plan a beach vacation, but I love the new way we have found to “do life” as a family.  I have made lifelong friendships that I never would have found, and taken trips I never would have taken. And I’m proud of the voice that lupus has given me.

See? Blurred lines.

Maybe lupus does get to define me, despite what some inspirational quote says. It certainly defines the way I live my life, and there is exactly zero I can do to change that. I fight back at lupus by sticking to its definitions because, as many of those with chronic illness know, that is what is best for my health. That’s the best way to fight. But I’m not alone. I have some pretty amazing friends and family to fill in for me when I need it. And I have found a community lupus warriors who would stand with me and shout my definition:

Lupus is a jerk.

But we will fight any jerk that messes with us.