Preparing to Have a Flare

I've had a backache for a few days. I've set up for the Chattanooga Market twice this month, and gone to a smaller farmer's market once. I figured the pain was from hauling stuff and bending, sitting in an uncomfortable chair, etc. This morning I woke myself up singing the pain song. What I mean is that I was whimpering in my sleep because my body hurt, and the noise woke me. I could see right away that I was in trouble. I got up and began walking and my thighs were stiff. It felt like I was expending major energy to make my legs move. There were annoying little shooting pains in my lower legs even when I sat. This is a flare until proven otherwise.

Obviously I can't prepare for something that begins so precipitously, but I've got some moves for when I recognize the inevitability of the flare. First, I put in a call to my rheumatologist. It's Thursday and I don't want to get caught out on the weekend trying to reach someone. Might as well get some instructions now. Second, I look at my schedule. For the next few weeks I need to determine what is absolutely essential, and cancel everything else. I will need the extra rest and I'm probably going to lack the energy or good will to do more. Third, I rally my moral support. Telling one or two sisters, my daughter, and a few good friends alerts everyone that I may need a bit of help, if only an ear for my complaining. It also lets them know that I'm not turning down activities with them because I've suddenly developed an aversion to their company. Fourth, I start recording my food intake. If I'm going on a higher dose of prednisone it is going to drastically increase my appetite. I need to monitor what I eat and make sure I stay on program. It will be especially difficult with the low carbohydrate plan my new internist wants me to try, as prednisone makes me crave baked goods and other carbs in a remarkable way.
Since my usual day is built around my crafting, specifically knitting and crochet, I don't have to change my basic purpose. I still want to get up in the morning, see what I can learn (reading or on the Internet), do maintenance on my stores, and then work on projects. The flare will put a kink in my ability and energy for photography, so I try and do it in short sessions at the times when my energy is best.
I sat down to record this plan so that I would stop obsessing with what this flare might mean. Yes, it might be a three-month disaster, but it also might respond to steroids right away and be a non-issue in three weeks. Yes, it is going to bring more pain, but my pain tolerance is high and my distraction skills have stood me well. Yes, there's going to be some disappointment in having to give up some activities and adjust my thinking to active illness mode, but that's happened dozens-hell, in 20 years, maybe hundreds-of times and it eventually passes.
Damn. My wrists hurt.
Peace.

This is What Better Feels Like

I think I've described what it's like when I am sick or in a lupus flare. I was treated twice in the past two weeks with a very specific therapy that targets B cells from my immune system. (Those are cells that contribute to lupus, which comes from an overactive immune system.) I tried to pay special attention to what is better now that I've been treated.
Within three days of the first dose, my joint pain improved and my energy increased. At the end of that week I was able to take my first decrease in prednisone dosage. By ten days post-treatment, I was using approximately half the pain medicine as before. In the past week I've done house cleaning and grocery shopping much more easily. I walk faster and I can go to more than one store when necessary. This week I decreased my prednisone again, and with no rebound of symptoms. When I woke this morning I realized that-once again-I can start my day with no pain.
There are a few foundations that help patients like me pay for this treatment. Without their help, my out-of-pocket expense would be more than $8000 per year, impossible for me and my post-recession economitis. Medicare only covers a fraction of the cost. It's a frustrating situation, as my being free of flares means less other medication has to be subsidized by Medicare, my need for expensive physical therapy is reduced, I can care for myself independently in my home, and I have less possibility of side effects from prednisone, which can cause expensive chronic diseases like diabetes and osteoporosis and cardiac disease.
People think of preventive medicine as being about physical exams, vaccines, cholesterol screening, mammograms, Pap smears...For me, prevention is about minimizing the debilitating effects of lupus and of the treatments for lupus. Both kinds of prevention are good for the country's annual health care expenditures.
On the knitting front: Lately I have been consumed with ideas about nontraditional design. I'm trying to throw away some conventions and produce pieces that are more sculptural and texture-driven. I'll get some photos this week and post them.
Peace! All power to the Wisconsin workers!

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.

Prednisone Blindside Response

I have been perplexed. The past few weeks I've noticed increased appetite and disrupted sleep. Increased appetite is an understatement. I've been ravenous. My usual lay down, close eyes, and fall asleep routine has been failing, and I awaken in the early morning, hungry and unable to return to sleep. I blamed it all on the extraordinary circumstances of my packing and moving, the excitement of house sale and new house. Tonight I it all came to a head. I was upset at my hungriness and the way it prevented sleep, and beginning to despair of having any improved health from my increased activity if all it meant was more appetite. As I bit into my low-cal, high-fiber, whole grain English muffin it hit me - my steroid dose is up. This is a sneaky steroid increase. I'm not taking a higher dose of prednisone. My oral dose remains at its baseline, not enough to cause these symptoms. However, almost three weeks ago I had a joint injection - a large dose of steroid (corticosteroid) medication was inserted directly into my left knee joint to treat an acute flare. We do this kind of treatment to put the medication directly where it is needed and to minimize the systemic affect of the meds, but a goodly portion is still absorbed into the bloodstream and disseminated to the rest of the body.

I am greatly relieved to realize the source of my symptoms. I've had such an increase in activity that I'm hoping to see better overall health. I thought it was being thwarted by my need to eat more, but now I know it is temporary. Moreover, having insomnia and being on an irregular schedule has never been good for my lupus. Keeping the wolf under control is much easier with adequate rest and a predictable meal, sleep and medication schedule. I should be close to getting over the steroid symptoms. One way I've been fighting them is to feed my appetite with huge amounts of plain steamed vegetables. My Publix had a $1 sale on microwavable vegetable packs, found in the produce section. I scooped up a pile and I indulge in them liberally. I also invested in several cases of my favorite sparkling water (yes, at $4 for 12 cans, it's an investment), and I fill up on bubbles.

A disease that has affected you for 17 years isn't going to be controlled or conquered overnight. I'm happy for every little insight that helps me manage better, even if it comes at 3 a.m.

Peace.