Tag Archives: normal

Let Me Know If You Need Anything


I hear that a lot. I also hear “Give Me A Call If You Need Anything”. (Same thing.) There’s also “If You Want Somebody To Go With You To The Doctor, Etc I’ll Go Along With You”, followed by “But Not Next Week Because I Can’t.” I don’t want to appear ungrateful but it would be nice if people would just help without telling me to ask them first.

Truth be told, there are times when it’s nearly impossible for me to ask for help … of any kind … when I need it on a regular basis. Asking once in a while is okay but I’m uncomfortable calling people up on a semi-regular basis saying “I feel like crap and need you to go to the grocery store for me because the lupus is acting up and I can’t be in florescent light.” It’s easier to just order groceries on line and pay the delivery fee. Doctor visits are stressful because I have stupid lupus brain-fog. It’s hard to recall what the doctor recommended, let alone what I said. Someday I’ll start bringing a small tape recorder along to get the facts straight.

Working full time means I schedule doctor appointments around my job. With years of practice I’ve learned how to hold the bad news from the appointment in check until I get home, where it’s safe to be frightened or angry or frustrated. Sometimes when I walk through the door, the cats look at me like I’m possessed. Maybe they actually see feelings swirling around my body, like Jupiter’s rings.

I used to think I was Superwoman. I had a full-time job and two part-time jobs to make ends meet. I didn’t have all her superpowers, but I sang every week and went to rehearsals every Monday night. I did fun stuff with friends. The best part during those years was raising an amazing son. We’d spend time at the park and the swimming pool, explore the botanical gardens or just sit in the back yard and look at the bugs under rocks. We’d visit family for every celebration we were invited to. I’d cook and send dinners to friends when they were sick. I’d help them clean their houses, decorate for holidays, and simply be there. I didn’t ask them if they needed my help because I knew they did. That was my normal. But having lupus forced me to redefine normal.

Lupus also forced me inside to avoid the sun. Lupus sucked all the energy out of my muscles leaving me aching and uncharacteristically exhausted. Lupus denied my freedom in small subtle increments over time. But I am resilient. I persevere. Having lupus is a daily battle with isolation, because if you don’t have this disease, there’s no way you’re capable of understanding how it wears you down. But I try to turn lemons into lemonade. I learned to enjoy solitude, writing, painting, reading, entertaining for good friends and sitting outside on patios … at night. Armed with bug spray in the summer. I go shopping at Target wearing sunblock. When I’m lucky I have moments of great peace and humble appreciation for the life God has given me. I thank Him for the strength to stay the course. And I firmly believe that through adversity, God gives us grace to learn the life lesson before us, if our hearts are open. I am not my disease. I count my blessings and try to pay it forward. Then the next lupus flare hits and knocks me down.

And once again, lupus is knocking me down. Crap.

I’m beginning a series of infusions, IVIG to be exact, starting later this week. Hopefully, IVIG will quiet down my immune system, which lately has been a stubborn little devil that messes with my skin, my central nervous system and my muscles. Hopefully I’ll know more about what to expect at the hospital. Outpatient … that’s good. I’m scared about having this treatment for many reasons! The most obvious reason is that I’ll be in the hospital for 6 hours with a big needle in my arm. I’m not afraid of needles, but this is something completely foreign to me. I’m getting a total of 9 treatments, for now. If my veins won’t hold up, I’ll get a PICC line. Blech! What if I can’t tolerate the medicine or have an allergic reaction? What if I catch some icky virus floating around in a hospital full of sick people? My immune system is already compromised. My plan is to read a book during the infusions. But what if I can’t read because the needle leaves only one arm to hold the book and turn the pages? But the biggest apprehension? Going through this alone. Sorry, but the 10-year-old girl inside me with the ponytails is screaming bloody murder and having a major fit. She’s very frightened and doesn’t want to be left alone.

Yes, my friends and family are just a phone call away. I’ll get through this, and so will my 10-year-old alter ego. And if I need anything I’ll let you know. I just wish I didn’t have to ask.