It is Sunday, October, cold outside, and I am at home. Yesterday I loaded my car with tables, chairs, my folded pop-up canopy, products, booth sign, and all the other necessary gear for a market day. This morning, as I was dressing, I noticed a 3-inch diameter, red, swollen area with thickened skin on a breast. Any first grader would have said "That doesn't look good." For a few minutes, I kept going, dressing and packing like I was headed to the market. My denial was shattered when I finally realized that an infection that had popped up overnight, enlarging so quickly, demanded staying at home. Next moves: call my rheumatology doctor as soon as it's late enough, monitor my temperature, and decrease activity to a pace for quick healing with minimal upset of lupus.
All of this may seem extreme. With a normal immune system, a tiny pimple doesn't become an abscess and appear overnight in such a well-developed condition. Your immune system kicks in, sends a bunch of white blood cells and antibodies, and the infection is controlled almost before you are aware of its presence. My immunosuppressed condition limits that reaction so I have to be very careful and have infections treated promptly and aggressively. This is not the time to be hesitant about antibiotics.
This was going to be my first Sunday at the Chattanooga Public Market this season. I've got a bunch of fun, beautiful, one of a kind hats and gloves ready, and I'm going to finish putting them in my Turtlefat store. I'm still open for business, even with lupus misbehavin'.
Peace.
Sunday, October 5, 2014
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.
Saturday, March 1, 2014
Infusion Center Fun
I'm risking a shipload of karma by talking about a funky afternoon at the infusion unit. Any talk of being in the company of cancer patients and receiving a $13,000 drug with the support of a special grant is generally made in a reverential tone. One should be grateful for life, the field of medicine, and the brick and mortar of the local teaching hospital and all its minions. Nevertheless, there are times when the bumpy, un-pretty operation of the whole process exceeds the mandate to remain gracefully silent.
I screwed up my schedule. I'm admitting that up front. The last time I went for treatment, there was a snowstorm, or what passes for one in Chattanooga, Tennessee. After a traumatic afternoon of making a 15-minute trip in two hours, complete with walking in the snow (make that slipping and sliding and falling in the snow) and dragging my disc disease-ridden lower spine up a steep hill by will alone, I lost my appointment card. Going on memory, I planned for the wrong day, and the right day had passed before I called to check and was told to come in Friday, the 28th.
The infusion center, home of cancer patients, hemophiliacs, chronic anemics, and a few auto-immune folk like me, was packed. There was no treatment recliner for me (universe forbid one take their treatment in a regular chair), so I sat on a narrow bench in the hall waiting for a free space. When I was called back and planted in a comfortable recliner, I thought my problems were over. My neighbors were a young Filipino women, sleeping under her hoodie, and and an empty chair. A nurse deftly inserted my IV and I settled in to knit and wait for my medication to be delivered from the pharmacy. The empty chair was soon occupied by a dreadfully thin, very ill-appearing man with one leg amputated. He was accompanied by an equally thin, fidgety woman who constantly asked how he felt and made frequent trips to the nurses station to request various drugs for his comfort. She never removed her sunglasses.
The Filipino girl was rudely awakened by her companion, an even younger girl (sister?) who yanked on her hood and shoved a phone in her ear. They spent much of the remaining time making calls, giggling and sharing the phone, evidently feeling that their noisiness was of no consequence if we couldn't understand their language.
In the interim, the chairs across from me came alive with an older man and woman informing each other about their lengthy illnesses and the trips they took between transfusion therapies. They were on the other side of the room, but I heard every detail about their years-long illnesses and began to contemplate pulling the curtain around my chair to pretend to solitude. Eventually the older woman finished "this mess", as she called her five times a month precious blood transfusions, and left. The man proceeded to fall asleep and snore loudly. With the first snore, the Filipino girls and I stifled laughs and looked at one another with complicity. After he cranked up to louder snores, he began to gargle, adding that liquid, bubbly component to the noise-quite an accomplished snorer he. A sudden crescendo produced audible laughing among us, prompting his wife to turn around humorlessly to find out who dared respond to her dear one's performance.
The skinny man next to me began to mutter about wanting to "puke", and I silently begged him to control that urge, as that activity is my perfect prompt for sympathetic vomiting. There was frantic activity on the part of his woman, who had by then called the doctor's office herself to ask for drugs. Her conversation with the nurses over who called when and what to expect took ten minutes. I beat a retreat to the bathroom in the hall, pushing all my hardware with me, and hoping I could stretch the walk until his problem was resolved. As I sat in the bathroom my infusion monitor beeped "complete" and I breathed a sigh of relief.
I took the slow, winding back way home, happy in my solitude, finally able to laugh over the nutty, chaotic afternoon experience.
The little guy pictured is my version of Piplup. Cuter than chemo.
Peace.
I screwed up my schedule. I'm admitting that up front. The last time I went for treatment, there was a snowstorm, or what passes for one in Chattanooga, Tennessee. After a traumatic afternoon of making a 15-minute trip in two hours, complete with walking in the snow (make that slipping and sliding and falling in the snow) and dragging my disc disease-ridden lower spine up a steep hill by will alone, I lost my appointment card. Going on memory, I planned for the wrong day, and the right day had passed before I called to check and was told to come in Friday, the 28th.
The infusion center, home of cancer patients, hemophiliacs, chronic anemics, and a few auto-immune folk like me, was packed. There was no treatment recliner for me (universe forbid one take their treatment in a regular chair), so I sat on a narrow bench in the hall waiting for a free space. When I was called back and planted in a comfortable recliner, I thought my problems were over. My neighbors were a young Filipino women, sleeping under her hoodie, and and an empty chair. A nurse deftly inserted my IV and I settled in to knit and wait for my medication to be delivered from the pharmacy. The empty chair was soon occupied by a dreadfully thin, very ill-appearing man with one leg amputated. He was accompanied by an equally thin, fidgety woman who constantly asked how he felt and made frequent trips to the nurses station to request various drugs for his comfort. She never removed her sunglasses.
The Filipino girl was rudely awakened by her companion, an even younger girl (sister?) who yanked on her hood and shoved a phone in her ear. They spent much of the remaining time making calls, giggling and sharing the phone, evidently feeling that their noisiness was of no consequence if we couldn't understand their language.
In the interim, the chairs across from me came alive with an older man and woman informing each other about their lengthy illnesses and the trips they took between transfusion therapies. They were on the other side of the room, but I heard every detail about their years-long illnesses and began to contemplate pulling the curtain around my chair to pretend to solitude. Eventually the older woman finished "this mess", as she called her five times a month precious blood transfusions, and left. The man proceeded to fall asleep and snore loudly. With the first snore, the Filipino girls and I stifled laughs and looked at one another with complicity. After he cranked up to louder snores, he began to gargle, adding that liquid, bubbly component to the noise-quite an accomplished snorer he. A sudden crescendo produced audible laughing among us, prompting his wife to turn around humorlessly to find out who dared respond to her dear one's performance.
The skinny man next to me began to mutter about wanting to "puke", and I silently begged him to control that urge, as that activity is my perfect prompt for sympathetic vomiting. There was frantic activity on the part of his woman, who had by then called the doctor's office herself to ask for drugs. Her conversation with the nurses over who called when and what to expect took ten minutes. I beat a retreat to the bathroom in the hall, pushing all my hardware with me, and hoping I could stretch the walk until his problem was resolved. As I sat in the bathroom my infusion monitor beeped "complete" and I breathed a sigh of relief.
I took the slow, winding back way home, happy in my solitude, finally able to laugh over the nutty, chaotic afternoon experience.
The little guy pictured is my version of Piplup. Cuter than chemo.
Peace.
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