I need to woman up and make a lupus confession. I have been promoting lupus-life hacks, and I don’t use all of them, some, but not all. I owe you an apology. Now I have no choice but to lupus-hack my life.
Lupus Hack #1
I recently had spine surgery (for a CSF leak) and during my post-op recovery, I was not allowed to drive for 4 weeks or pick up anything over 5 lbs. I had no choice but to start using Peapod for grocery delivery. I have to admit that I love it. I’m able to schedule delivery dates and times. Plus the delivery person carries the groceries into my house. As a bonus, Peapod is offering free delivery for 60 days on new accounts. Give it a try for that reason alone. Since I began using Peapod, I’ve noticed that I have been spending less
on groceries. I guess I’m easily tempted in the grocery store. (And here I thought I was a control freak. Now I know that’s not true because I can’t always control temptations.) What can I say? I’m very weak when it comes to chocolate. To balance my chocolate treats, I always buy a few extra vegetables, promising that I will eat them. Alas, a week later, my good-intention veggies end up rotten and in the trash spooning my promises.
Lupus Hack #2
Because of my driving restriction, I had to start using Uber by myself to get to doctor appointments. As a petite woman it was a bit scary. Fortunately, my first solo Uber trip was with a female driver. After using Uber a few times now, I’m a fan. (Right now you can get $20 off your first ride. Click the Uber link above to claim your gift.)
Lupus Hack #3
I’m surrendering my medication management and signing up with the company Pillpack. This is in progress – updates to follow.
My Lupus
Since my back surgery, I had to use a wheelchair for the first time. I signed up months ago to participate in a color run. I’m not a 
runner, so I planned to “color walk” the 5-K course. This is the run where participants are doused with colored cornstarch. By the end of the course, we should look like rainbows from head to toe. Well, now I’m too weak to walk more than half a mile. There was no way I would be able to walk the 5-K course.
My boyfriend found a wheelchair that we borrowed for the event. #browniepoints. This was the first time I needed to use a wheelchair. I had mixed emotions. I was grateful for my boyfriend taking it upon himself to find a wheelchair and the fact that he was willing to push me, so I could participate. I also have some amazing new friends who pitched in and shared the wheelchair pushing duty. #feelingblessed. The color run/walk was a blast. However, I think my wheelchair was a target for those color throwers, because I definitely got “painted” the most. I imagine the color throwers saw me in a wheelchair and thought, “Poor thing, let’s give her extra color to boost her spirits”.
The color run/walk was a humbling experience and while I am filled with oodles of gratitude, I’m mortified that my life has come to this. It’s not fair. I don’t deserve this. I’m too young to be in a wheelchair. 
I’m overwhelmed with intense sadness as I admit to myself that lupus is deteriorating my body. Using the wheelchair made me afraid that people would stare at me. I hate being the center of attention. I’d rather stay at home, where I’m safe. Where I can hide under the covers whenever I’m tired, weak, or headachy. I worry about everything: will the heat be too much for me, will the sun exposure cause a skin flare, what if I start getting a migraine, what if I get over fatigued, what if_______???
Since my lupus diagnosis, my anxiety seems to intensify each year. I decided that I needed to use medication to keep it under control because it was getting out of hand. I feel ashamed for needing it to control my anxiety. I used to be so much stronger: physically, mentally, and emotionally. Now, I lack physical endurance, and mental clarity is elusive to me. Mrs. Emotional Strength packed up her bags and abandoned me without any justification.
In addition to medication for my anxiety, I also use 
prayer, meditation and I get regular Reiki treatments. If you haven’t heard of or tried Reiki, I strongly recommend it. Since I have fibromyalgia, sometimes massage hurts. (Periodically, even the lightest touch can be painful.) With Reiki, the practitioner lightly places their hands on or above my body. There is no body manipulation, thus no chance for increased pain. Reiki is so relaxing and I swear by it as an alternative therapy. I tried acupuncture and cranial-sacral therapy and while they were nice, I definitely prefer Reiki.
So how can I tie this hodgepodge blog piece together? It comes down to me following my own advice. Peel back another layer of my She-Ra shield and it reveals that I’m ultimately hurting myself by refusing to accept the limitations that my chronic illnesses impose upon me.
Seriously now, I do feel very passionate about everything I write and I believe in all of it. I just need to value myself enough to embody it and live my life in a way that honors my limitations from multiple chronic illnesses: lupus (SLE), lupus nephritis, fibromyalgia, polycystic kidney disease, Reynaud’s phenomenon, and Chiari malformation. I think I’ll start honoring my body right now by catching some zzz’s. Please listen to and honor your body, take it easy on yourself, and value yourself because you are worth it.
