Friday, May 23, 2014

Can I Please Just Be the Patient?

So have I mentioned that 22 years of prednisone can cause severe bone thinning, from osteopenia or osteoporosis? In March and April I went to physical therapy for help with lumbar disc disease. My symptoms improved, my walking distance got much better, and I had a load of fun feeling like an athlete. Every treatment day I walked on a treadmill or rode a recumbent bike or both, until I worked up to 20 to 30 minutes of cardio and began to increase speed. That felt great-me in my black Spandex and long tee and Sauconys, hair on top of my head in a ponytail, towel around my neck-almost like going to the gym.

One day I got up and felt very short of breath. A series of heart and lung tests revealed the cause - multiple right side rib fractures. Seriously, I had broken a bunch of ribs without a trauma stronger than a cough or turning over in bed. That's thin bones.

I'm on calcium and vitamin D now. It could have been avoided, but I made a bad mistake. I acted like a patient. One of the worst things you can experience as a medical professional is for doctors to expect you to manage your own care. Mine have generally been very good about that, treating me like any other patient, keeping things organized and being the ones who check for new problems. Until my bone density studies. They fell through the cracks for seven years. No one ordered one, no one checked the record to see when I'd had one, no one asked me when the last one was. So I didn't have one. Mind you, osteoporosis was one of the reasons I stopped working 12 years ago. It was severe. I was on treatment, we were following DEXAs (bone density studies), it was improving...and then...I don't know. I'd say I dropped the ball, but it wasn't my ball to drop.

In lupus, so much is happening that you need a scorekeeper and spreadsheet to keep up. You keep track of your symptoms-any new ones, any changing ones, how long have they been there, how are you treating them. You pick up prescriptions, report expired ones, take the drugs, use the creams and ointments and eye drops, report side effects or lack of effect. You manage your lifestyle, trying to eat right, get activity, stay social, avoid sun, sleep enough, avoid infection. You manage the finances, trying to get the lifestyle on scant funds, paying the medical bills $10 at a time, begging for funding for new therapies, keeping the lights on and the mortgage up to date. And you manage your attitude, staving off depression, being patient, forbearing, remembering others need kindness, and doing gratitude, always gratitude, because people are telling you "If I hadn't been praying for you all these years, you'd be dead."

I used to tell patients to help take control of their medical care. Ask questions. Participate in decision-making. Read up on your condition or your goals of better health. Work on the lifestyle, be proactive. Make this a preventive effort. But that didn't include "keep track of everything because your doctor won't". It never included "do the doctor's job for her".

Obviously I'm pissed off. Once again, one step forward, six steps back. I don't know enough profanity to express my disappointment and anger.

Peace. Peace-ish.

No comments:

Post a Comment