The Count

17 and 1/2 pills.  I hadn’t counted in a while, and I was a little surprised.  It is truly distilled to a minimum: 
1.  Prednisone takes five tablets right now, a 5 mg and four 1 mg, to make up my 9 mg dosage.  I am on a very slow, gradual taper.  In two more weeks [...]

Losing Mothers and Keeping Life Open

I woke tired this morning, after a deliberately early bedtime and a seemingly comfortable night’s sleep.  It was a struggle to be ready in time for the 9 a.m. expected arrival of a workman, but I made it, and was disappointed when he did not.  He appeared two hours late, bringing a helper so that [...]

the war escalates

i hit the wall today.  no caps because my fingers are stiff and sore and it takes extra reach and force to hold down the shift key.  my wrists, shoulders, elbows, ribs, hips, knees and feet also hurt.  my cheeks are red and hot to the touch.  my feet are so stiff that i have [...]

My Body at War

Happy to be back.  That’s me.  Back is here, writing.  I write all the time in my head, unfortunately without that electronic connection to my printer that would allow it to be printed out.  Even better would be a line directly to my laptop, so that my posts could be written straight from the brain.  [...]

Chemo Reality

Big reality check.  I went for my lupus chemo treatment yesterday.  I take them every four to six months, and each treatment set consists of two treatments, two weeks apart.  This was the first tiime I’d been with a group that was expressing the difficulties of their situation.  Previously, I’ve been surrounded by people who were [...]

Ain’t Too Proud to Beg…

I had my treatment today at the oncology center.  It was fun.  No, they didn’t give me anything that affected my brain, except the usual Benadryl.  I met some new people, including a woman who’s been on and off in treatment for breast cancer for 20 years, and makes it her business to know everyone [...]

Answers About Lupus Treatment

I put myself on the hot seat by divulging that I am both patient and physician.  I am not surprised that hard questions result from that.  I don’t mind moving from the exam table to the doc’s stool and answering whatever people ask, as long as it doesn’t constitute giving individual medical advice.  I cannot [...]

Prednisone and Optimism and a Whole Lotta Talk

I’ve been taking a break.  I didn’t plan it.  It started with the rib attack, which is still hanging on a little bit.  I had to double my prednisone, and that produced restlessness.  Instead of being able to sit nicely at my computer and type, I was reduced to knitting frantically, hour after hour, while I [...]

Treating Lupus: A Physician-Patient Perspective

Yesterday I joined a new group:  We Are Lupus, at www.wearelupus.org.  It is made up of a few hundred people, mostly lupus patients, but also patients with some related disorders, and family members and friends of patients.   It promises to be a good forum.  It’s always good to have the company and wisdom of other people [...]