Acknowledging chronic illness

Wow. I really don’t deserve this but I truly appreciate your concern, advice, and best wishes sent over the last few days following my post on losing, and slowly regaining, my voice. I didn’t know anyone was still reading but some of you must have seen my RSS feed pop up under the cobwebs on your reader.
What’s interesting is that I generally look well in person other than getting winded when walking too fast or going up stairs (yes! I can walk up stairs now! w00t!). And to be honest, the loss of 14 lbs I didn’t need has actually made me look a little more fit. I’ve still got a long way to go in my recovery but people think I look better than I actually am.
So among the comments I received in the last few days was an exceptionally prescient and timely one from Lisa Copen. She wrote the following in response to my February 7th post, “Meditations on those with chronic illness,” a post I wrote when I was about at my worst.

Thank you for your kind simple words at the end of your post that say, “So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.”
As the founder of National Invisible Chronic Illness Awareness Week (and a patient of 17 years of rheumatoid arthritis) I can say that just hearing the simple validation from others is what people crave most. We did a survey a few years ago and with over 1500 respondents what they “hate” hearing the most is “but you look so good!” There is some part of our human nature, despite whatever kind of suffering we are going through, be it physical,mental, emotional, financial, whatever – that desires someone to say, “I don’t know how you do it. I respect that it is hard and you inspire me.”
Blessings on your continued endeavors.

Lisa didn’t mention it in her comment but she is also founder of a non-profit group called Rest Ministries, “a Christian organization that serves the chronically ill through a variety of programs and resources.” I also added the link to National Invisible Chronic Illness Awareness Week because Lisa didn’t have it. We get a lot of self-promotional stuff here in comments and e-mail but Lisa’s comment clearly came from the heart. So, I’ll promote her work for her because she’s doing good stuff.
While I haven’t vetted all of the medical information at Rest Ministries, it seems to have a lot of useful suggestions and tools for those with chronic illness and their caregivers and loved ones. A quick glance at their section on alternative treatments wisely notes the risks of infection with acupuncture and suggests instead more useful motion exercises such as tai chi. For folks needing help around the house, they note how to go about screening cleaning services. They have what looks like a good bookstore and I may even have to buy one of their $8.50 T-shirts that have 33 ways to encourage a chronically ill friend (jpeg of shirt back).
Even if you are of another faith, atheist, or agnostic, you may find something useful there.
Thank you, Lisa, for stopping by.

My voice has been absent from the blogosphere. . .

. . .because my voice has also been absent from the offline world.
Yes, the final gift to me from LungMutiny2010 is a case of inhaled corticosteroid dysphonia – and another opportunity to cultivate compassion for those with chronic illnesses and permanent loss of physiological functioning.
Here’s a recap: After a three month battle with pneumonia, I returned to the university as much as I could about six weeks ago. I say “as much as I could” because, once again, I was amazed by how little my body would let me do after being confined to bed for ten weeks.
Some days I’d just be doing great and, without warning, hit a wall of complete exhaustion – the kind that even a triple-venti, quadruple-espresso shot beverage couldn’t remedy. Other days I’d wonder why the soles of my feet were red and burning – I had to remind myself that my walk across campus the preceding day was a little much on feet that hadn’t walked, much less seen shoes, for most of the year.
But even as my stamina is on an upward trajectory, I still had laryngitis as my pulmonary symptoms resolved. I kept waiting for it to improve as I tried to talk through the hoarseness.
Then three weeks ago, I lost my voice to all but a whisper.
Fortunately, one of our local academic medical centers maintains a voice care clinic out of their Division of Otolaryngology. I was able to get in within a week to see one of the senior docs in the group and an outstanding team of nurse practitioners and speech pathologists. After lengthy questioning about my allergy/asthma history and the course of my illness to date, they anesthetized my nasal passages with tetracaine spray and viewed my vocal cords with a strobscopic laryngoscope.
The technology was awesome to watch in the recorded video but confirmed that my vocal cords were bright pinkish-red and swollen with irregular edges. “That’s about as bad as we see them around here,” was the quote from my doc as he pointed to the monitor. I forgot to ask if there was a way for me to download some stills to show you here.
Advair Terra Sig.jpgIt seems likely that the large amounts of oral corticosteroids followed by inhaled steroids did a great job helping my lungs heal but set up my vocal cords for a Candida infection (fungal), steroid myopathy, or some combination thereof.
Yes, it’s a major bummer to have what would be called an iatrogenic adverse effect but without these steroids, I’d still be on my back in bed. I make this point because no drug possesses absolute safety. All drugs have a some spectrum of benefits and risks of side effects – the setting in which they are used determines whether those benefits outweigh the risks. I would take these steroids again in a heartbeat. Remember, those who have followed this saga: I was coughing so hard that I was passing out (cough syncope) and I believe I either cracked a rib or tore a tendon from the months of hacking.
I did some reading after another colleague told me of the prevalence of this inhaled steroid side effect. Inhaled corticosteroid dysphonia was first widely described in the literature in 1983 by a group from East Birmingham Hospital in England. In recent years, this adverse reaction seems to have increased in incidence with the introduction of dry power inhalers, usually in the form of the longer-lasting steroid fluticasone.
This 2004 Laryngoscope article from the University of Pennsylvania describes the problem and the pathology quite well.

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Orange juice a better source for potassium than Gatorade®

Florida Track Club.jpgWho knew?
As I am stuttering through recovery from LungMutiny2010, I am paying more attention to my diet. So, as I try to go out for my 10 min walk everyday, I still drink some sports drink – usually Gatorade made from the massive vat of powder you can buy here at Costco.
We tend to get plenty of sodium in our diet – far too much in the US, actually – but I always worry about potassium when I am sweating (Disclaimer: I am not an exercise physiologist or a cardiovascular or nephrology physician.).
I always thought that the widely-sold sports drinks were the best sources of potassium outside of eating bananas or some dried fruits.
So, I was surprised to learn that an 8-ounce serving of orange juice contains 18-fold more potassium than an 8-ounce serving of Gatorade® (450 mg vs. 25 mg).
I suspect that this is a Good Thing when exercising but perhaps a concern for hypertensive patients who must monitor their potassium levels.
Is there anyone with more practical knowledge about potassium and physiology willing to weigh in?
Is a dilute, no-pulp orange juice (maybe 1:1 with water) a good adjunct to a sports drink when carrying multiple bottles of beverages on a bike ride or trail run?

Depression from job loss and chronic illness

Slow Love.jpgFrom the “unsubstantiated evidence” files, I wanted to share with you a quick light that popped on in my head while reading a much-discussed article from last weekend’s New York Times magazine.
In it, former House & Garden magazine editor Dominique Browning vividly shares her experiences following the folding of the magazine in 2007. This long-form essay is adapted from her upcoming book, Slow Love: How I Lost My Job, Put On My Pajamas, and Found Happiness.
Much can be discussed about her experiences but I was particularly struck by the account of her response to her newfound “freedom.”

In this way, being unemployed is a lot like being depressed. You know how there are millions (O.K., a handful) of things you swear you would do if you only had the time? Now that I had all the time in the world — except for the hours during which I was looking for work — to read, write, watch birds, travel, play minor-key nocturnes, have lunch with friends, train a dog, get a dog, learn to cook, knit a sweater, iron the napkins and even the sheets, I had absolutely no energy for any of it. It made no difference that music and books and nature had long been the mainstays of my spirit. Just thinking about them exhausted me. I had absolutely zero experience in filling weeks — what if it became years? — with activity of my own choosing. Being unemployed meant being unoccupied, literally. I felt hollow.

This passage reads in many ways like my own less-polished account upon learning that my pneumonia diagnosis in late January would confine me to my home, away from work, for four weeks (which ended up being about seven weeks and continues on and off today):

When told I’d be confined to bed for a month, I thought that it would be great – that I’d get two papers and a grant renewal done and still have plenty of time for blog posts I’ve been wanting to get to, finish writing a couple of songs to take to the studio, get all the tax documents together, maybe learn a little CSS and webpage design and get around to a hosted personal website for the domain I’ve had for a year, etc.
After 10 days now, I’ve really done nothing more than read for short periods and sleep for long periods, with energy only for one blog post, a paragraph or two on a paper, and arranging for my classes to be taught. Twitter works, though, as 140 characters is about the limit. To be really sick – to the point of not being able to concentrate for more than 10 min – is a foreign concept. And I’m not actually *really* sick like other folks with chronic illnesses, cancer, etc.
To be unable to make your body do what you want it to is frustrating enough, especially when your little girl wants to go play in an infrequent snowfall of significance.

I’m slowly getting my energy back, some days better than others, and Dominique describe further a very similar pattern. Just a few thoughts today – and I’ll definitely pre-order the book. Her writing is glorious.
You can learn more about Dominique Browning at her blog, Slow Love Life.

Am still around but…

Just a quick note to readers to let you know that I have not forgotten you. I am finally back to work after LungMutiny2010 and must tend to many issues that have accumulated in my absence. I should have some new and interesting topics for you later this week.
In the meantime, feel free to note in the comment thread any interesting posts you may have read over the last few days regardless of their topic, science or not.
See you soon!

LungMutiny2010 continues: reflections on chronic illnesses

A few weeks ago, I wrote a post about being stricken with pneumonia and my reflections on what it must be like for people who live continually with chronic illnesses. I was surprised by the response from many readers, quite a few of whom I’ve never seen comment here, who voiced understanding and even relief that a “normal” would take the time to reflect on what their life might be like.
Well, my illness is continuing even longer than my pulmonologist had expected and this has evoked for me a whole new layer of emotions. I write the following not for sympathy or concern, but rather for the Medicine and Health channel of ScienceBlogs to give voice to those much worse off than I who may not otherwise have a voice in our national health care dialogue.
A note of warning for those who read me regularly: the following will include foul language, disgust, hopelessness, and possibly disturbing thoughts you may not normally associate with me. These are the rants of a blogger who has been confined to bed for just over six weeks. As a result, the rest of the post is below the fold.

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Meditations on those with chronic illnesses

I have just a couple of thoughts today that I offer to the reader not for sympathy but, rather, for scientific observation and reflection.
I’ve been dealing with a case of bronchitis that became pneumonia. I tried to teach through it, do grant reviews, finish a book chapter, etc. but was finally ordered by my pulmonologist to recuperative bedrest at home for approximately four weeks.
When told I’d be confined to bed for a month, I thought that it would be great – that I’d get two papers and a grant renewal done and still have plenty of time for blog posts I’ve been wanting to get to, finish writing a couple of songs to take to the studio, get all the tax documents together, maybe learn a little CSS and webpage design and get around to a hosted personal website for the domain I’ve had for a year, etc.
After 10 days now, I’ve really done nothing more than read for short periods and sleep for long periods, with energy only for one blog post, a paragraph or two on a paper, and arranging for my classes to be taught. Twitter works, though, as 140 characters is about the limit. To be really sick – to the point of not being able to concentrate for more than 10 min – is a foreign concept. And I’m not actually *really* sick like other folks with chronic illnesses, cancer, etc.
To be unable to make your body do what you want it to is frustrating enough, especially when your little girl wants to go play in an infrequent snowfall of significance.
But I find it remarkable that an illness having nothing to do with the CNS can wreak such havoc on cognition, concentration, and motivation.
Some people might think, “wow, you’ve had 10 days to do *anything* you want,” but it blows me away that 10 days have passed and I’ve done jack shit.
So today, my heart goes out to all of those who suffer with chronic illnesses every day. You have my admiration and respect.