Sunday, February 21, 2010

Bulldozing the Obstacles

I have always been able to see time in a very concrete way. Days stretch out before me, empty three-dimensional blocks, partially filled with activities and obligations. I can reach out my long planning arm and place an appointment into a slot and see how much of the day is obliterated. Different kinds of scheduled activities make the day lighter or darker, depending on their desirability. I can see obligations that are not firmly rooted being pushed to more distant blocks as I add in more urgent appointments. My days are balanced on a health platform that is also quite tangible - a slanting summation of physical capabilities that can make or break a day. That, too, is somewhat scheduled. I know when my treatments and medication changes will occur, and I can take full advantage of the associated energy, strength, and pain changes.

I describe this to explain why I am now in an uncomfortable position. Last week the surgeon threw me a curve ball. He wants to wait until my healing nodule shrinks as much as possible before excising it. This makes sense; small nodule means small incision means easier healing. If it becomes infected again, we will rush to remove it. In addition, a curve ball from the chemotherapy guys. No more rituximab until the whole nodule situation is resolved. So...I have a surgery appointment floating freely in my calendar matrix, and the health platform tilt has been completely changed in an unpredictable way. I don't know what happens when you only have one out of two infusions of a rituximab dose. Do enough B cells die to hold back the flares? Is there a risk of rebound flaring if the dose isn't "reinforced" by the followup?

I'm supposed to be able to travel soon, a big trip to Minnesota to visit my sister. I tend to regress with travel, so I try to be as strong as possible in anticipation of it. I also need my endurance for exercising (no weight loss without it on my pitiful metabolism), keeping up my house (no cleaning service in the budget now), finishing my current projects and stocking up for the Chattanooga Market opening in April. I've gone out on a limb scheduling things that were appropriate for my level of health over the past year, and now there may be a radical change.

So, we've dealt with the perception. What about the feelings? Well, I, this is not my forte, the feelings stuff. I have to sit still and be nonintellectual and try and decipher what my gut is saying. I am anxious. Fearful. Unsettled. But I am also curious, challenged, and a little excited. The wall of adversity is climbed in our minds moreso than with our arms and legs. I have climbed it before and I know I can now.

When I was a freshman at Vanderbilt, I had a hectic schedule. I was taking engineering and science courses with lots of projects and long labs. I was introduced to independent living and using my feet for transportation. I was continuing my instruction in classical piano, making the long trek to the Peabody campus to practice for hours daily. As I walked to the music department every day, I would say to myself "I am a bull dozer, plowing relentlessly forward." I made a running narrative of my trek, detailing my progress up and down hills, across the campus lawns, up stairs and down halls. It was entertaining but it also kept me moving. That kind of narrative serves me well at times like this, where I need to keep the excitement and not get stuck on the fear.


Wednesday, February 17, 2010

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?


Sunday, February 14, 2010

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.

Sunday, February 7, 2010

Knitting at Home

It takes me at least a year to learn how to live in a new home. I have to unpack a reasonable number of my possessions, weather a full round of the seasons, travel and come back to the home, and do some entertaining. Being chronically ill added a few items to the list: see how I feel about the home after a spell of being sick, and check out my friends and family for willingness to come to me when I can't come to them. This learning process includes the neighborhood, as I must familiarize myself with the local services and establishments and make new paths for shopping and entertainment.

I'm not very far into the first year of this home. I'm 85% unpacked, and quite happy with the space for my crafting. My yarn storage/display works great, with shelves in the family room and my bedroom. I have wonderful areas to sit and knit-my room, the back porch, the family room, even the front stairs. When I am outside, I can glance up and enjoy the view of the hills east of the city. Oddly enough, it looks back towards my last suburban home. I have no nostalgia in that view-just enjoyment and a feeling that I left at the right time.

Entertaining sounds very formal. What I really mean is this: can my friends and family be comfortable coming to this place? It's nice to be close enough for my sisters to drop in, and 10 miles nearer for friends who formerly had to calculate the distance and time into their visits. But there is also the welcome factor. I love my home to be a peaceful haven where people can grab a coffee or a cookie, sink into a comfortable chair, and talk, knit, laugh, watch television, or just vegetate. I was raised in a home with plastic slip covers on the furniture in a living room that children didn't invade. People called before they came, and they didn't put their feet on the furniture. I was determined that-whatever my circumstances-I'd have a comfortable, plastic-free place to sit and visit. I would welcome visitors and their children, and appointments wouldn't necessarily be required.

Case in point-yesterday. I hosted knitting group. Eight of us managed to eat, drink, talk, knit and even have an impromptu lesson in my family room/dining/kitchen space. We pulled in one chair from my bedroom (a wonderful find from, put a few folding tables to use (including one stained with Dayna's paints), and still had elbow room. One friend who is a regular visitor gave 60-second home tours. I got to share the art that I love. No one judged for the messy bedrooms and not yet organized craft room.

My friends surprised me yesterday. They brought wonderful food and home items, declaring that it was also house warming. They lingered. They picked up after themselves. They included my daughter. It reminded me why they are considered my friends, and not just people from a knitting meeting.