Dreary Lupus Details, or Tales from the Land of the Immunocompromised

When I began my blog 400-odd posts ago, it was my intention to relate tales from my daily life with lupus. Many other things have been discussed, but when the disease takes a turn that controls my day-to-day activities, I have to make it the headline. I'd rather be talking about the mittens I'm knitting for afghans for Afghans, or my current obsession with slouch hats, or a design in my head for a vest, or even the wild and interesting dreams I've had lately. Instead, there's this lump...

I keep a good eye on my skin, staying alert for rashes and bruises and lumps and bumps. When one is immunosupressed as I am by prednisone and rituximab, infections of the skin can come frequently and progress quickly. Anytime I see a little infected hair follicle gone wild with redness and swelling and tenderness, I take a brief course of antibiotics. Once in the past I delayed too long, and developed an infection in a closed, very painful space that had me calling my doctor out of church to lance it and put me out of my misery. I try to avoid that scenario. Last week one got by me. Midweek I noticed a painful swelling about waist-high on my back. If it had been where I could see it, or where something pressed on it, it wouldn't have gone so long. Anyway, it was maybe 1 x 1 cm and the skin over it was very red. I started antibiotics the next day when it had grown and was even redder. It took 48 hours for the antibiotic to control the swelling and redness as the infection continued to develop. It peaked at about 5 cm, exquisitely tender and squishy, indicating the pus within. It never drained. From there it shrunk every day, the redness diminished, the infected, cystic space becoming consolidated. I'm left with a 3 cm, firm nodule that must be removed, capsule and all.

Alongside all this is my scheduled rituximab treatment. I had to miss the second dose last week, as I can't take immunosupressive treatment when I have an infection. I rescheduled for this week, but I still can't go. I'm on for removal of the Big Lump Friday. I don't know what I do from here, so I've got a call in to my doc.

Okay, so the real nitty gritty. I missed knitting last week because I had a huge, fluctuant thing on my back that I was afraid would open and drain in the middle of the meeting. That is neither convenient or sexy. Or hygienic. It is stuff like this that can crop up and take control of my life. Just another piece of the lupus story.

On a much better note, grumpy post not withstanding, I received a lovely Valentine's phone call from a lovely man. Who knew?

Peace.

Gag, Puke, It's Valentine's Day

Already people (all female) are calling and texting Valentine's greetings. I hate this day. Its wholesale acceptance and commercialization makes it second to none in the humiliation of single women. If you are over the age of 5 and not recently widowed, the lack of a Valentine signifies some socially unacceptable deficit in your person. Every commercial shouts that a male of the species is going to deliver candy and flowers, and make a romantic evening out of showing you how special you are. No candy and flowers-not very special.

Single women are holding their breath today, hoping that someone (the UPS man?) will come forward and admit to a longheld, secret admiration, and present the candy and flowers. Even women who are preoccupied with their poverty, child-rearing, aging or illness feel that glimmer of anticipation, and the inevitable letdown as the day passes without acknowledgement.

Single men, on the other hand, make jokes about breaking up with nonessential girlfriends before the holiday to escape expensive gift purchases. Since they are the initiators, they don't have to sit around-circa 1960 dating-waiting for the call and the gift. Instead, they blow it off and enjoy basketball or-this year-the Olympics. No pressure, guys.

For most of us, it is nice to be appreciated by our men, current or past. You know, the ones whose children we are raising (alone), the one we feed every time he shows up on the doorstep after a year-long silence, the one we helped in chemistry lab or saved from flunking out of engineering school...oh yeah, and the ones we dated faithfully while they hid multiple other partners from us. Did I mention the liars? After all, we gave them all pieces of ourselves, and probably did much ego-stroking and complimenting and being nice when we wanted to scream.

When I was a young girl, my Daddy purchased valentines and candy for all the girls in his life-his wife (now of 65+ years) and his six daughters. We felt appreciated and loved. This was reinforced by getting all those classmate valentines, with the teacher's mandate that everyone be included. Maybe this was some sunshiney hiatus from the real world, but 35 years later I'm still hoping for some appreciation from the men. Maybe the early "you are special" thing was just a set-up for false expectations. Men really aren't much the sentimental, you were nice to me once upon a time creatures we'd love them to be.

This sounds really mean and snarky and bitter. It is intentional. I truly hate this day. I've tried to turn it into something else, like acknowledge all your friends day, but it doesn't work. Once I was married to a man who believed that the only thing a woman could do to warrant flowers was have a baby. Only Valentine's Day makes me remember that.

Oh yeah, I almost forgot to mention that the greetings I hate most are the ones that remind me that if I don't have a man, Jesus will fill my need and be my man. Seriously, I can tell you where to file that one.

No peace.