Making Fun in Bad Times

Just now I wrote four paragraphs and accidentally hit an unknown key and it disappeared. That's the theme of the past two months-put in a lot of effort for nothing. I took two chemo treatments that didn't work and had side effects; I put time and attention into a man who clams up under pressure; I began exercising only to find that a flare made it impossible; I prepared a pile of beautiful baby room accessories and clothing and cannot begin the market on time (you can see examples below).

I am in limbo, fighting a flare without specific meds for it. I rarely leave the house due to pain and lack of energy and frequent infection. I can't start the market with my comrades next Sunday. I have prepared and prepared and I can't carry on until something ends this.

I'm still coming to terms with the rituximab failure. Four years ago, that medicine was like a miracle. In a lot of ways it liberated me, making me healthy enough to get out of the house, be with friends and family, build a market business instead of just existing on the internet. Now, one bad treatment cycle and my doctor has stopped it. The next medication choice leads us into uncharted territory.

Today I recognized that creeping self-pity and overwhelming sadness and chose some activities to fight it. I re-read Knit 2 Together, Patterns and Stories for Serious Knitting Fun. Tracey Ullman and Mel Clark put some unusual patterns and fun narrative together, and they seem better and more useful to me now that the first time I read it. I have lots more knitting knowledge and experience and more appreciation for elegant construction and a sense of design humor.

I also pulled out a box of Seinfeld dvds, and I'm going to work my way through several seasons. It is perfect for a knitting accompaniment. There's no action for me to look up and follow. Conversation is the whole show-what happened or didn't happen or should have happened, nothing too banal or trivial to discuss. In my family, where each one's opinion is too important to keep to oneself, this sounds very familiar, and the show makes me laugh like a crazy person.

I have a crockpot of my favorite flageolet beans. Interesting food is more important when you eat alone at home day after day. It's a cheap luxury and one of the few ways I can impact my disease right now.

I've promised myself to keep writing when things are bad. This account should always be about the totality of having this damn disease, not just the triumphal moments.

Peace.

August 2011 - Change Time

Wow! Lots of changes this year. Some are good, some not so much, but we've reached a point in the year when all are evident. My daughter is transferring to a different university to finish her art degree. It is a friendly environment, a little easier to reach by car, and it has the area of concentration that she desires. It took a move from old university apartment to home, then big sorting and editing of possessions, then a move from home to new university house. Can you hear my joints creaking? Actually, my girl is strong and energetic. She carried 75 percent of her things, probably 98% of the upstairs moving, and I concentrated on sorting and putting away belongings. Now that the chores are done, I can reflect on my comfort with her recent choices. She picked a school and program that seem suit all her needs, and she's already making friends there.

Both of my parents are gone. Mama followed Daddy by just four months. We knew that after 70 years she was searching for her connection with him, but her death was still a shock. I feel unmoored. There's no one to call to report my car troubles or my latest encounter with one of their church members. When I made butter cream frosting for the first time, I almost picked up the phone to discuss the results with Mama. At least once a week I wonder why Daddy hasn't called to check in: "Hey, Esoo, how are you getting along? Haven't heard from you since last week."

One of my sisters and her hubby will arrive in town soon, buying the parents' house and making Chattanooga their retirement place. With four sisters here, that will strengthen the family hub. I've always liked living in the place where relatives are most likely to visit.

I have custom orders lined up: a large blanket made of a variety of Lorna's Laces yarns, a shawl in a complicated rainbow of colors. Just finished a matching hat and booties to go with an organic cotton baby blanket. A baby boy in New York will have a bright welcome. If I can figure out how, I will add the photo my daughter took with her phone.

All is well. This is a chemo (rituximab) week, so I will put my feet up and knit.

Peace. Peace.

Meanwhile, Back at the Ranch...

I'm separating my lupus woes from my afghan series so I can concentrate fully on getting good pattern instructions out for the latter. I'm suffering on the former front, and I can't wait to be better. I have pain in several joints, including the metacarpal-phalangeal joints of my hands (where the fingers meet the palm). Those joints are swollen and tender and a bit reddened, looking like the rheumatoid arthritis joints that they are. My mom's hands looked like this before they took on the typical RA deformities. My knees ache and have sharp pains at unpredictable times like the lupus joints that they are. My sacroiliac joints are incredibly inflammed, so walking and standing is torture. Meds only partially suppress any of this, so I am a cranky hurting person.

I'm finally allowed to return to my rituximab therapy, and I had one IV session yesterday, to be repeated in two weeks. Oh joy. Seriously. I'm happy, just don't feel like smiling right this minute.

I've continued knitting during this flare (surprise!). I have my mind on completing custom orders and preparing for the Chattanooga Market. That means I'm knitting a wool hat and scarf, a custom afghan, and cute little summer hats at the same time. Must look a little schizophrenic from the outside. Right now I'm focused on spring/summer items for the Market, so the striped hats are a major step in that direction. They are knit in elann.com Esprit, 98.3% cotton/1.7% elastic, an easy care comfy yarn that knits well. It's identical to Cascade Fixation which gives me an expanded color range if I need it. I'd love to offer some little sleeveless pullovers for kids in the same yarn. We'll see. My colors were chosen by a kind of rigid formula of my own making. It has pushed me into some nice color combos that are new for me. I made each color combo in at least one adult and one child's size, so one can choose to match their offspring. They are simple enough that I'm willing to make more custom sizes if needed.

Peace.

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 feel...um...okay, 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.

Peace.

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.