Poco a poco...

Once upon a time, I was a registered nurse and the nurse administrator for a hemodialysis center in a rural community. Because of my past experience in hemodialysis and administration in another community, I'd been recruited by the medical director to hire and train staff and get the dialysis center off the ground. From renovating a building near the hospital to the first day we began out-patient treatments, it was a slow and tedious process. "Poco a poco. Little by little," the medical director often commented during those early organizational days when nothing seemed to happen fast enough.

It's the perfect description for the progress I'm making these days, as well...but it's progress. My liver enzymes are back to normal and two weeks ago I started a new medication - leflunonomide. So far, so good. When I increased the dosage from 1/2 to 1 tablet daily after ten days as prescribed, I was also supposed to decrease the prednisone back down to 3 5-mg tablets - but I don't think I'm ready to do that yet. Soon.

Until this morning, Louis was still getting me up at 4:00am and the routine has been the same, except I've noticed over the past week that it has been less and less painful, and I've been able to stop using the walker earlier and earlier each day. I went to church this past Sunday, and yesterday morning I didn't need the walker, at all. This morning, I only needed it for a short time, when I got up by myself at 4:30 after Louis had already gone to work.  

Progress. Poco a poco - but progress.

Starting over...

The past couple of weeks, with only slight variations, my days have looked something like this:

4:00 - 4:30 am: the first most difficult challenge - Louis helps me get out of bed so I can make my way with a walker to a chair in the living room. It's a slow and painful process. My feet, ankles, knees, hands, wrists, shoulders and sometimes elbows and hips are swollen stiff and inflammed, making it beyond difficult to bear weight on any of my joints. Prednisone promises relief, but it must be taken with food and the ulcer medication must be taken an hour before eating. So I take the ulcer medication and something for pain, and Louis helps me arrange heating pads around the most painful joints, a pillow under my left knee (which I cannot straighten) and other comfort measures before he leaves for work.

5:30 am: the second most difficult challenge - I gather up enough courage to get up out of the living room chair by myself and walk (with the walker) to the kitchen to eat a little something and take the rest of my meds, including prednisone. The pain med usually hasn't kicked in yet and it's a miserable task. Sliding or dragging, rather than walking, is a better description for how I continue to move at that hour.

7:00 am: Though it's still painful, the pain meds have dulled the sharpest edges by now and I need to get up and move. I'll need to use the walker for 1-3 more hours, but the thought of standing and moving no longer makes me want to cry.

By 7:30 am, I've been awake more than 3 hours and determined to get dressed. Before RA I would have been content to stay in PJ's all day, if given the opportunity, but it's important to my mental health to get dressed as soon as I can and not look like the invalid I obviously am these days.

Some time mid-morning I'm able to put the walker away for the day, but I'm still not able to move without pain and limping, and most chores and the activities of daily living are obstacles to overcome.

The best time of day is between 2:00 - 7:00 pm, but I have to be careful to not overdo. Monday I had to leave the house for lab work and to run a few errands in Ft. Myers. Emily did most of the shopping while I waited in the car, but I paid severely for what little I did.

Thursday I thought I'd try walking down to the creek with my camera. I'm going stir-crazy here in the house and the creek isn't that far from the house - 150 feet at the most. After I came inside I took a shower. My legs and ankles hurt so bad that I didn't think I could stand long enough to rinse the soap off. I got out of the shower, sat down and cried.

That's when I made the decision to call the rheumatologist this morning and not wait for my appointment on Monday. I'm so glad I did. I doubted my ability to get through the weekend on my present medication regime. The prednisone dosage was increased from 15 to 20mg, and after just one day, I'm already feeling better and more optimistic that my doctors will be able to prescribe a treatment plan that will not damage my liver or lungs.