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.

Friday, December 6, 2013

Marketing Makes My Teeth Hurt and Other Stories From Business as a Knitter



Early in retirement, I picked up my knitting needles to make family Christmas gifts. I learned to knit and crochet as a young child, along with embroidery, cross-stitch and sewing. I would have made a good little Victorian girl. I still had my equipment but had to go looking for yarn. I began in craft stores. I had no knowledge of "yarn stores", or the LYS (local yarn store) in knitters lingo. They carried a huge range of mostly artificial fibers, which were a vast improvement on what was available when I was in elementary school. I loaded up and started knitting.

I loved knitting. I could sit for hours working to finish a piece and be ready to start another right after it. The supplies were small and portable, I could keep enough yarn in my house to avoid emergency runs to the craft store, and the knitting motions soothed me and made my pain more tolerable. That was the up side. I knitted and knitted and knitted and finished accessories piled up and I connected my knitting to internet learning and yarn-buying sources and studied my craft and visited every yarn store I could get to, and all was well. I finally opened Turtlefat on the internet, and began selling my wares.

Enter marketing. I was a Girl Scout and sold cookies, and I was a Junior Achievement sales star. In those activities, marketing meant telling your parents and neighbors and friends what you were selling, and they bought some. Usually there was a reciprocal arrangement: I supported your baked sale for the cheer leaders, you bought my JA silk-screened tee. Even early on Etsy.com where my store is established marketing was simple. There just wasn't that much competition. I sold abundantly my first two years, before 10,000 other people decided they needed to join the site. Now, people either stumble over my products doing an exhaustive search for the right yellow hand knit baby sweater, or they go to my store because they are aware of my work.

My idea of marketing is taking my wares to the Chattanooga Public Market on April-November Sundays, chatting with people while they browse, and answering their questions about Turtlefat, knitting in general, a particular product, or the free musical artist of the day. That approach is very dependent on my state of health. I don't think I've attended more than six or seven markets this year, even though I've had excellent volunteer help for the booth set-up chores. So I've looked at alternatives. I placed some items at the Merchants Warehouse in Chattanooga, a fun and easy place to shop, and I've boned up on ways to let people know about my next original alpaca/merino/silk, cabled, lace, ribbed, violet gloves. Sadly, as much as I've read about using social media to get the word out, I'd rather knit a pair of gloves than spend the day photographing them, posting photos, describing them and labeling them.

This year's general decline in health is due to a medication failure, a temporary problem. I've started a new one, so hopefully next year I'll be in shape to go back to the Chattanooga Market and schmooze with my peeps. Meanwhile, I've gotta get on the ball with the photos and words and reminders and all the marketing stuff that makes my teeth ache. I can't even hold still to take a photo without pain, so it takes great resolve to dedicate an hour or two for that task.  Wish I could afford to hire a sky writer and rent one billboard. I think that would do it.

Meanwhile, my feet are up and dough is rising and time ticks on, passing through this spell of lupus flares and the rest of life. It's dark now. Have to put off photos 'til tomorrow. Shucks.

Peace.


This is me trying on the finished Christmas hat I knit for a friend. She described what she wanted, I worked out a pattern and knitted.

Thursday, November 7, 2013

The Lungs and I

In my senior (third) year of internal medicine training, I decided I wanted to be in pulmonary medicine. I loved the physiology of lung function, the intricate anatomy of delicate lung tissue surrounding the bronchial tree, and the range of diseases that affected the lungs. The dual purposes of lung - oxygenation and immune response - are critical to survival.

I worked in the pulmonary division at Hopkins during that last year, helping with research on allergic response by the lungs. I interviewed at my top three choices of pulmonary fellowships, including two in California. The interviews pin-pointed the patient population in the pulmonary division of each institution and the research that dominated their pulmonary labs.

A tangent:  It was 1985. Acquired immune deficiency syndrome (AIDS) had been described only four years before and research into the deadly disease proceeded at a furious pace in most major medical institutions in the world. During my residency I had seen many people diagnosed with the syndrome and followed their rapid deterioration to certain death. I knew that in pulmonary medicine I would encounter many more, since the opportunistic infections that plagued these patients included some unique kinds of pneumonia and cancers that affected lung tissue.

The University of California at San Francisco Medical Center and I chose each other and my fate was sealed. I prepared to spend the next few years in San Francisco doing research that involved putting tiny tubes into hamster lungs. The pulmonary clinic and in-patient unit were filled with AIDS patients, so I knew that would affect my experience there, too.

Then I "fooled around and fell in love". Remember that one? Elvin Bishop? My plan changed radically. I turned down the fellowship and found a great community health center where I could work in Chattanooga. I packed my bags in June 1985 and said "good-bye" to research. My friends teased me about coming home. "Will you go to work in overalls?" "Is there a hospital in Chattanooga?" They reminded me that it was rare for a Johns Hopkins resident to choose a career doing nothing but clinical work, although our residency had emphasized time at the bedside and in the clinic, providing patient care. I found a few excuses that served me well, mostly discussing rodents and research, the preponderance of AIDS patients, and the ickiness of pulmonary secretions. Love was too unscientific to be used as a reason for changing plans.

In the end, I got everything I needed. I wound up in a beautiful city with a progressive, well-educated medical community, the failed love produced a fabulous daughter, and my internal medicine career covered a huge range of medical and social concerns with focus on the people, not the lab. I treated all kinds of pulmonary conditions, from Legionnaire's Disease (Legionella pneumonia) to asthma to sarcoidosis. My practice pre-dated hospitalists so I had plenty of opportunity to manage critical care patients. I diagnosed and treated many HIV-positive and AIDS patients and accepted them into my private office a good deal earlier than any of my colleagues. No part of my Hopkins training went unused.

This post is brought to you by my current coughing, feverish, mucus-rich, annual bronchitis.
Wear your hat. It's cold outside.

Peace.


Sunday, September 8, 2013

Thoughts on Pain

My medical training did not cover how to live with pain. My hundreds of encounters as a patient did not focus on how to live with pain. Always, the teaching was about getting rid of pain. 

When the cause of pain can be fixed-a bullet removed, a broken limb casted, an illness cured or put into remission-it is wonderful. The doctor feels successful, the patient is satisfied and relieved. Often, however, a tentative compromise is achieved-some pain relief, a decrease in severity of the illness, a continued need for treatment and monitoring-producing a distinct change in lifestyle for the person affected. When the change involves chronic or recurrent pain, we need to consider more than which pain pill to grab.

I am writing this from the perspective of one currently in pain. This flare of lupus activity has produced severe joint inflammation, and inflammation produces pain and stiffness. I cannot wait for resolution and write this, because our memory for pain is minimal and my best ideas for dealing with it come when I need creative solutions to my own misery. Later, I will forget the pain so thoroughly that it will seem less important to record this information.

Pain serves one purpose. It helps us know that there is a problem, and sometimes where that problem lives. Otherwise, it is not helpful. It doesn't make us stronger or braver or more kind or understanding. It doesn't enrich our lives and help us notice the small wonders of the world. I have to work hard to keep the pain from making me mean, impatient, unfriendly, sad and helpless. It is a grueling experience. It is humbling in the way that being whipped into submission is humbling-no honor in it.

I am a strong advocate of using pain medicines. We have good ones available and-when a doctor accepts their usefulness and educates herself-they should be used whenever indicated, without prejudice or judgment, once the source of the pain has been determined. I am not writing with the intention of eliminating this practice, but with the desire to supplement it. It is rare for pain medication to completely eliminate pain. The usual "successful" outcome is for pain to be diminished by half or more. That is enough for most people to function well and be relatively comfortable. I am writing about dealing with the space in between, where relief is elusive or delayed.

For me, pain magnifies my "To Do" list. I realize that I am hurting and instantly I see all the things I need to accomplish lined up before me. I start rushing to finish things, trying to beat that imaginary clock that pressures me about getting done before the pain takes over completely. That panic has left me crying and exhausted, unable to do the basic things that will help me be more comfortable. My solution has been training myself to slow down at the first twinge of severe pain-slow down and think. I sit down and work my way through a few questions:

1. Why am I hurting so bad? Did I forget to take a dose of medicine? Have I been neglecting sleep? Is this disease getting worse (do other symptoms exist besides pain)? Am I being affected by some other circumstance like loneliness, money stresses, or the pain of someone close to me?

2. What will make me feel better right this minute? Think heat, cold, position, rest, stretching, a cup of coffee or tea, a more supportive pair of shoes...

3. Can I distract myself for a while? Reading, playing a game, watching an episode of a favorite show, knitting, etc.

4. Can I get a cuddle? My dachshund is curled up like a kidney bean right next to me. She is always good for some snuggling. But you also know someone you can call who has an outlook that makes you feel better. Sometimes it isn't Pollyanna. It can be the one that makes you laugh or the one who commiserates about the ugliness of acrylic yarn.

All of those questions help me when I am at home. If I am away, I think a little differently. 

1. What will help me right this minute? A riding cart in the grocery store, putting off this errand until another day, pulling over for a stretch and change of seat position, putting down half this load and making a few slow trips, a cold bottle of water placed against a painful area, the car seat warmer...
and the rest waits until I am home.


Pain is not  necessarily good at telling us about function. Sometimes in acute situations it directs us well-it hurts when I try to move this broken arm, so I keep it still, avoiding further injury. Outside of those acute situations, pain can be misleading. For instance, the severity of the pain doesn't always correlate to the severity of the physical problem. A paper cut hurts terribly but is not life-threatening. However, pain makes us anxious, and the worse the pain the more severe the anxiety. I remember this when I have to function in spite of pain, so that I push away the pain and anxiety and continue to do what I must. If I am in the grocery store and pain grips me, I think "Yes, it hurts to walk, but I am not making the inflammation worse when I walk. This pain isn't teaching me anything new, so control the anxiety, breath it out and keep moving." 

Just now I went for a cup of coffee and took my meds. My body is saying that this is enough for now. Only one more word.

Peace.








Monday, August 26, 2013

This is a Flare, Isn't It?

It may seem unlikely, but one of the problems I have with systemic lupus is that I can't always tell if I am sick. When I feel a new ache or pain, or have a day that ends in severe fatigue, or "lose" a few words in the recesses of my brain, it may simply be an ordinary day with a few inconvenient symptoms. If the symptoms persist over several days and some tell-tale iconic signs arise, I suspect it is a flare. For me those signs are painful feet, an ache in my sacroiliac joints and feeling feverish in the evening. 

Those signs are not very specific and sometimes I am still not sure if the disease is "flaring", or becoming very active. Moreover, I'm attached to my healthy time and dread being sick. 22 years of this cycle has not given me an ounce of real acceptance, only resignation and dread. Frequently this leads to some foot-dragging in acknowledging that I am sick again, and a delay starting the necessary high-dose steroids. 

Last week I noticed some symptoms, said "Here it comes," and increased my prednisone immediately. My thoughts floated above the usual anxiety and indecision. I rested when I felt the need, kept as busy as possible and focused on the coming knitting business season. Is this some kind of crazy grown-up thing? 

The coming season starts next week when I set up a display of products for sale at the new Merchants Warehouse in Chattanooga. It is home for many local makers and a few small antique sellers. It is my first opportunity in this kind of sales venue, where I rent space in a retail emporium that is open every day, staffed with lovely, welcoming people. I will be free to stay home to design and make new products, with a periodic check on my inventory. Joy! A business change that doesn't require a strong back!

Photos soon.
Peace.



Friday, August 9, 2013

WTF: In a Good Way

Honestly. Honestly! I could use another phrase here but so far I've managed to keep my blog free of some of my favorite exclamations, but some days really make you wanna say WTF. In a good way.

I burnt my turkey burger (and Lucy's, too), installed the wrong cartridges in my printer and washed my debit card today. Everything came out just fine.

Lucy and I had slightly smaller turkey burgers as I removed the ring of char for discard. She didn't seem to notice the difference, expressing her "this is the best day of my life" attitude as I fed her tiny bites. She's lost a bunch of teeth so she doesn't chew anything if she can help it, so it takes a long time to feed her a burger. A long, happy time.

I had a form to print, fill out and return for my daughter. When I finally realized that the printer was telling me it didn't recognize the cartridges I had installed, I jumped in the car and went to FedEx Kinko's, the small, friendly one near my house. A nice, patient employee kept an eye on me and helped me get past obstacles like how to insert my very clean debit card. An amazing young man refused to take the computer and scanner ahead of me, and I chatted with his mom a bit as I did my scan and email chores. When I finished I bought myself a little bag of m&ms because it was that kind of day. Then I bought one for the nice young man in case he was having that kind of day, too.

The ink cartridge store didn't have the black cartridge I needed, but the man who helped me knew right away what could substitute for it. I wanted to make a commercial for them.

Perhaps the craziest thing is that I've had wild energy all day and none of this made me feel like falling on the bed with exhaustion. It is more remarkable when you consider that my last bio-therapy treatment failed, and I have not replaced it with anything. I've been cruising along for several months on a few milligrams of prednisone a day, and if anything I feel better. Lupus is a capricious disease. I never know if I'm waking to a good day or a bad one, but I appreciate this recent string of good ones.

Peace.