~There is Strength in Stumbling~

(for whoever still follows me)

I’m working part-time at Petsmart this summer. I went back to the camp and was hired as the program director, but chose to resign towards the end of pre-camp because there was a new director who created a hostile work environment where I was often a target of her anger and stress, and I felt so uncomfortable that I saw no other option but to leave.

I was really down about it at first, but honestly... I LOVE my new job. I love my co-workers, I love the pets!! I also love having free time for the first time in SEVERAL years. And most of all, I love that I’ve grown to be brave enough to make a decision like that - to do what’s right for me, even when it’s hard. Camp is near and dear to my heart, and maybe I’ll go back into it someday. I can still honestly see myself doing it as a career. But at the moment, this chapter of my life (Girl Scouts specifically) is coming to a close. 

It’s been a while since I posted. About a year, I think.

Lupus is scary. And it sucks. And I know that no one will ever really understand it. But I’m fighting it, and I’m winning.

My meds began to balance out, my kidney function improved... haven’t had hives in months. I felt confident enough to work at a summer camp again. Not the same one, unfortunately, but one that has more indoor programming. It’s better for my health.

Of course, it was a hard goodbye. But not as hard as when I thought it’d be forever. 

This summer has gone really well at the camp. So well that I’m going to come back next summer, hopefully in a greater leadership role.

Camp is for EVERYONE. It changed my life, and I can sincerely see myself as a camp professional for the rest of my life.

I’ve been fighting these hives that I got because of a sunburn for over a week. See previous post for a pic.

I’m exhausted. Sick of being sick. Sick of telling doctors I have lupus and seeing their faces fall. I’ve gotten a lot of “I’m sorry” and “Lupus is a tough disease, but people can make it.”

People CAN MAKE IT? I’m not going for survival. I lived 22 years of good health. I want to keep LIVING, not surviving. 

These hives put me over the line today. I’ve been living in a Benadryl fog for a week. None of the remedies worked. I finally got into another Urgent Care today and got another prescription to fill. I have to go back to school tomorrow.

I keep looking around my living room and feeling heartsick. I don’t know if I’m strong enough for school. And I’m really fucking terrified because my body hasn’t ever fought me before. I don’t want to let my parents down. I want to finish college.

But I’m also getting really tired. Especially because I don’t “Look sick enough” to be feeling this way.

I qualify for handicapped parking. And I really, really need it on sunny days. I don’t want to break out in hives or pass out because of a walk to class.

I keep reading stories about people who get hell from strangers for using it if they don’t have a wheelchair. I’m afraid to actually use it. Maybe it’ll hide in my glove compartment, or I’ll park when no one’s around.

The sun sensitivity got worse. Hive outbreaks, vomiting, nausea, lightheadedness, confusion, dizziness...

Even walking to class, a 5 minute walk, became a battle. A battle I’ll have to keep fighting for months while I try to get through my last year of college.

I’m beginning to grapple with leaving behind 13 years of the outdoors. I don’t think I’ll ever be a camp counselor again. I have a beautiful Osprey backpacking pack that I got for my birthday in January. I don’t know if I’ll ever get to use it again. 

I’m starting to push away my dreams - the Appalachian, El Camino..

When my doctor told me I might have lupus, I googled it and knew that she was probably right. The hair loss, fatigue, joint pain, sun sensitivity.. my parents told me not to jump to conclusions.

I guess I should start by saying I’m a camp person. I love summer camp. I’ve been going for 13 years, 5 of which were on staff. I love hiking, tree climbing, adventuring, boating, lifeguarding.. I belong outside.

Or at least I used to.

I was tested for lymphoma, negative. Next was a kidney biopsy. Lupus nephritis. 

She was right. My life would change, but I didn’t really know how. August was when I found out, fiance beside me at the nephrologist. 

We were about to face a great unknown.