The Gratitude Post

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Okay, so I admit some of the old familiar demons started surfacing last night:

Anxiety that in the midst of many deadlines, I am bedridden with another infection. Or at least couch-ridden, where I balance my laptop on my stomach and type when I am not coughing.

(And yet even as I wonder how I’ll get it all done when I can’t breathe or sit up, I’m composing e-mails in my head, plotting out the next development or venture, a weird inverse relationship between how I am feeling and how much I think I should be able to do.)

Frustration over the fact I will be canceling plans for the weekend, and hesitancy over making more plans in the near future because I’ve had to cancel far more engagements than I’ve made it to lately.

(I’ve been in this cycle so many times. I’ve written about it and even been interviewed on the radio about it. Infection after infection, cancelled plans after cancelled plans, and soon the fear of letting people down and having to say “I’m sorry, but” starts to creep into my thoughts.)

But before the anxiety and the frustration reached full hilt, I came across this post on gratitude at Sick Momma that gave me pause (thanks for the kind words, Aviva!). Instead of thinking about articles on deadline and plans I needed to break, I tried to consider things from a different perspective.

I am grateful for friends who understand when I disappear for weeks or months at a time, who know when I say I am sick there is nothing I can do about it and that it has nothing to do with not wanting to see them, who are as happy to get coffee or drink tea as they are to go out and get drinks, and who always redeem rain-checks.

I am grateful for a rock star of a doctor who e-mails me back right away, and for a wonderful hospital only a few minutes away when I need it most. I’m grateful to live in an area where cutting-edge technology and research is at my disposal.

I am grateful for knowledge. People with PCD who are only a couple of decades older than me grew up with so much more mystery. It may have taken awhile, but at least I now know what’s wrong, what to expect, and how to prevent further damage.

I am grateful for the community of writers, experts, mentors and other professionals I am privileged to know, people whose wisdom and passion inspire me.

I am grateful to be building a career where even if it means looking at the computer screen over the top of a nebulizer mouthpiece or typing when I’m in a prone position because I’m just not getting oxygen, I can still get work done and still do something I am passionate about. I am also grateful for my students, who are thoughtful and committed, and who teach me a lot about healthcare.

I am grateful for a supportive family who brings me soy lattes and chicken soup and instinctively waits by the phone in case a “hospital call” comes their way. I am especially grateful for a husband who anticipates my needs better than I do, who can tell by the tone of my voice how much air I am moving, and who brings the world to my doorstep when he knows I’m feeling isolated by illness.

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Carnivals, Links, Nebulizers…

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Increased time spent with my trusty nebulizer plus increased deadlines with a dash of extended family functions=what?

You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.

However, I do have some links to quality reading to share. First off, it’s the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.

Also, I’ve written before about patient authority and the right to say “No” to procedures. (I’ve also left the hospital against medical advice before, but that’s a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I’m told even if I don’t like it–because let’s be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?–if it’s something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients’ rights and consenting to medical procedures. Check it out if you have a minute.

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Got Sleep?

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Got sleep stories?

I’m writing an article about new research on sleep and looking for anecdotes from women who’ve struggled with sleep. Everyone knows it’s important, everyone knows we need more of it, and no one gets enough of it.

So what did it take for you to finally make a change in your life and get better sleep? If you have an “aha” moment, e-mail me (see e-mail link on sidebar) and let me know about it. I’m eager to hear about what you’ve done to make a change, and what it took to get you there. Thanks so much!

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When Is a Cold Just a Cold?

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Well, never, in my world. It’s on my mind this weekend because instead of seeing friends like I had planned, I spent most of my time on the couch debating when to use my nebulizer. Was it the remnants of the New Year’s infection? The rumblings of something new? I’ll know by the end of the week.

There’s definitely a theme to my winter survival mode: a brand-new, extra large size bottle of hand sanitizer is on my nightstand. A mini version rests comfortably in my car’s consol, another one lounges in our kitchen drawer, yet another adorns the downstairs bathroom, and a lovely raspberry-scented model is stowed away in my briefcase, where it is never more than five seconds from me.

And with this rogue band of weapons, I attempt to stave off the runny noses of toddlers with daycare colds, the spraying sneezes of commuters on crowded subway cars, the coughs and infected hands that shuffle all the papers toward me in class, the germs flying around the hospitals and doctors’ offices I frequent. Before he leaves my house every day, my chest physical therapist uses whichever bottle is handy so he doesn’t spread my germs to any other patients, and I am grateful for his vigilance.

I will admit I’ve always had germaphobe tendencies. I’m the girl who layers toilet paper on the seat in public restrooms and takes an extra paper towel to shut off the faucets and open the restroom doors after I’ve washed my hands. At one point in college I even wore flip-flops in the shower, and it wasn’t a community shower in a dorm. It was a shower in a 5-person townhouse that was cleaned weekly.

Trust me, if you had my immune system, you’d probably be the same way. Well, maybe close to it, anyway. You’d at least be into the hand hygiene.

I caught a cold on the plane ride out on my honeymoon, which took place in the summer. By April of the following year, I’d finally calmed down the lingering plague that touched off during that one plane ride. My niece had a slight earache when she slept over one night. Three days later, she was fine. Three days later, I had a ruptured eardrum, a steady river of goo streaming out of my ear, and an infection that wasn’t responding to IV antibiotics.

Um, yes. And I’m being honest when I say I’ve come a long way since I was a kid and I had strep in my ears and my knees, staph infections that required prolonged stays in isolation, numerous surgeries, and had something going off to be cultured literally every week.

For most people, a cold is synonymous with misery—congestion, sore throat, cough, poor sleep, the whole works. And a cold is every one of those miserable things.

For me and anyone else with immune or respiratory issues, a cold is synonymous with several weeks (or months) of sickness, hospitalization, multiple new medications, and protracted annoyance. It will spread to my lungs and settle down for the season, and spread to my ears and camp out there for months. It will linger and fester and mutate and replicate, and it will end up being something nastier and greener than the simple cold it started out as…but no matter what, it is never just a cold.

I may look like your typical overzealous germ freak but I prefer to see it as being proactive.

And because I love toddlers with their runny noses and wouldn’t trade the interaction with students and prefer taking public transportation to wasting gas and jostling for parking spaces downtown, I will arm myself with colorful bottles of hand sanitizer and brave the outdoors.

***
Switching gears from what everyone experiences—colds—to what few people experience, there was an interesting read in Newsweek’s “My Turn” column recently about living with a rare disease. The writer posited that living with something no one else around you has is a “little like being an orphan” and in some ways, that’s true. When you have something that only affects a few thousand people (the National Organization for Rare Disorders classifies an “orphan disease” as any which affects less than 200,000 people), you certainly don’t see huge fundraising campaigns, national events and color-coded ribbons.

You have to seek out whatever community exists, or you have to create your own. I don’t know a single person with PCD (and only one with bronchiectasis) in real life, and until I found Yahoo groups and other online forums for patients, I had nothing to compare my experiences to except what I knew about from cystic fibrosis patients.

And yet there are literally millions of patients living with rare diseases out there, so connecting and establishing those ties is so important.

Because I also live with conditions that many people have, I also know that while it’s harder sometimes to have something no one’s ever heard of and can’t even pronounce, the basic experience of living with a chronic condition is universal. The ups and downs, the setbacks and the progress, that fundamental tension between what you want to do and what you can do remains unchanged.

***
Speaking of setbacks and progress, Jenni over at ChronicBabe has a put together a great recap and response to the NYT’s recent article about fibromyalgia, Lyrica, and whether or not FM is real. Whether you have FM or not you need to check it out!

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The Evolution of the Mental Health Day

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It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…

…And then I plunked down at my computer and dove into work, excited that I had such an early start and that a whole day to catch up on projects and hopefully get ahead on others stretched before me.

Oh, how times have changed.

My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.

Considering how many weeks of school I missed every single year due to my illnesses, not everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.

If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.

Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.

And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.

Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.

True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.

***
Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.

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Mental Health Days, Evolved

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It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…

…And then I plunked down at my computer and dove into work, excited that I had such an early start and a whole day to catch up on projects and hopefully get ahead on others stretched before me.

Oh, how times have changed.

My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.

Considering how many weeks of school I missed every single year due to my illnesses, not everyone everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.

If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.

Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.

And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.

Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.

True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.

***
Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.

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Medical Weblog Awards

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I am very pleased–and quite humbled–to announce that A Chronic Dose was named a finalist in the Best Literary Medical Weblog category. To even be in the running with such wonderful sites is an honor, and I thank you very much. Click Here to visit Medgadget and vote. The polls are now open, so click over and cast your vote!

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About Antibiotics

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I know healthy people who say things like, “I don’t believe in taking medicine” or “I don’t like putting anything in my body besides aspirin.”

(These are frequently the same people who, when asked if they’ve ever been a hospital patient, are wont to say “Well, not since I was born,” causing me to shake my head in wonder. Who knew such people existed? And that I would one day marry one?)

My unspoken reaction is always “Good for you.” I realize how incredibly flippant that sounds, but I don’t mean it flippantly at all. It’s refreshing to be reminded that there are people out there—people in my life, even—who are healthy, who do not have any conditions that require regular medication.

I mean, who wouldn’t want aspirin to the only occasional remedy you need to live your life and get done what you need to do?

I will admit I am a bit blasé sometimes about taking medicine. I never skip a dose or anything like that, it’s just not something I think about. It’s something I just do, part of my daily routine for literally as long as I can remember. On a given day, I take no less than eight medicines (good times) and no more than fourteen (less good times). I have cut out four medicines altogether in the past few years, which pleases me.

I have tested and charted and experimented to make sure I am not taking any medications that I could do without, because just like my healthy counterparts, I really don’t like putting anything unnecessary in my body, either. I don’t like the never-ending co-pays, the refills, the side effects like a racing heart, dizziness, feeling jittery, brittle bones, enlarged organs, endocrine damage, etc.

But I dislike respiratory distress, respiratory failure and other phenomena even more.

Antibiotics are a regular part of my medical arsenal. And I do mean regular. In fact, they are indispensable. Remember that New Year’s Eve day infection? It got worse and worse, to the point where I was dizzy from not getting enough air, my peak flows barely registered, and all the nebs and chest PT in the world couldn’t cut through the infected mucus lodged in my chest. I basically didn’t leave my house for eight days.

The only reason I am even functioning at half capacity right now? I brought into rotation an antibiotic I hadn’t used in awhile. (Between the nature of what I grow and the fact I’ve been on them so long, there are only a few out there I can rely on). Even with them, I teetered on the edge of the hospital for a couple days, and without these antibiotics, I have no doubt I would be in the hospital right now.

Antibiotics are a hot-button issue. The big things I hear from my students and people I know in the trenches? They are over-prescribed, they are given to demanding patients or parents whose children have colds and viruses when they don’t need them, they are given to people who don’t complete the proper course of treatment once they start feeling better. In an age of multiple drug resistant bacteria, “super bugs” and emerging infectious disease, this is problematic, to say the least.

Believe me, I am just as worried about the misuse of antibiotics. Does that sound weird coming from someone who basically lives on them? I’m even more cognizant of it precisely because of how much I have to rely on them.

And yet because it is so normal for people like me to take them, I rarely stop and think about what I am putting into my body when I take one. It’s another part of the routine. But I should give them the respect for the formidable force they are. After all, look at this partial list of “less common” side effects for my current antibiotic:

“…Abdominal pain, abnormal dreams, abnormal or double vision, aggressiveness, agitation, anemia, angina, anxiety, asthma, back pain, blood abnormalities, blood clots, changeable emotions, chest pain, circulatory failure, colitis, coma, confusion, depression, difficulty in or obstructed breathing, difficulty concentrating, disorientation, dizziness, emotional or mental problems, exaggerated sense of well-being, fainting, fungal infection, gangrene or other infections, gas, genital infection and itching, hallucination, heart attack, heart failure, heartbeat irregularities, high or low blood pressure, high or low blood sugar, hives, impaired thinking, indigestion, intestinal bleeding, intestinal inflammation or blockage, irregular heartbeat, itching, kidney disorders, lack of muscle coordination, liver disorders, lung problems or inflammation, muscle pain weakness, pancreatitis, paralysis, pneumonia, rapid or slow heartbeat, rash, seizures, swelling of face or extremities, swollen tongue, tendon inflammation, tumor, vaginal inflammation, vertigo, vomiting, yellowing of eyes and skin…”

Yikes. A healthy fear is now officially instilled.

Along with a huge dose of gratitude that they still continue to do what I need them to do.

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The Measure of Choice…

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Read this Salon article, “The Baby I Turned Away.” Go ahead, click away from my page, read it, gauge your initial reaction to it, and come back to me. (C’mon, have I ever given you a bad reading recommendation?)

I couldn’t not write about this, but even after reading it a few times, sleeping on it, reading it again, wading through the letters posted, I’m still all over the map. Here’s what I’ve come up with so far:

Whether you think the author, Jessica Berger Gross, is a superficial “baby shopper” lulled by a romanticized ideal of India and motherhood or a woman who simply knew her limits and made the right choice (most reactions tended to split down these two lines), you have to respect the honesty here. It’s not easy to lay bare your most painful decisions, your fears, and your limitations, especially with such an emotionally charged issue.

I’m not interested in dissecting, praising, or bashing the author here. I’d rather explore the whole idea of choice. Choice, both within the context of this one article and in much broader terms, is a luxury. For example, the author had the option (read: financial security) to pursue an expensive foreign adoption. That alone is not something every person who wants a baby but cannot have one on their own can do, and she knows they are the “lucky ones.”

But so often the luxury of having a choice brings so many additional possibilities and consequences. In this case, the ability to pursue this adoption put them in the position to face tough, tough questions. As the author writes,

“I wished we were different people, the kind who would welcome this child, welcome the risks, with no questions asked. I wanted to help her, to make her OK. But what if I couldn’t? Could I love her anyway? To a parent, this question must be unthinkable. You love your child no matter what, accepting all limits and gifts. But we had a choice, and the magical thread that had spun us around this child for the previous two days was beginning to unwind and tangle.”

Ahh, the downside of choice. It forces us to confront our weaknesses, it shatters our perceptions of perfection.

Obviously I am approaching all of this from a different perspective than a lot of people who either applaud or condemn Gross. I’m not the parent of a special needs child, nor am I currently pursuing an adoption. But the whole idea of what is “normal” or “healthy” (Editor’s note: Go on and read this, too–it’s relevant to my position) and what happens when the future we envision is far different from the reality we inherit is an important one to me. And I think whether you’re talking about disease or developmental delays or emotional problems or whatever the special circumstance may be, it all boils down to the same fundamental debate.

What do you do when life doesn’t conform to your plans?

On the one hand, this sentiment from a Salon letter-writer, Late Again, gave me pause:

“Why would you CHOOSE something with so much heartache if you didn’t have to? Thank god there are people who do. But, really, most of us wouldn’t choose a difficult path given an alternative. The major advantage of adoption over biological birth is the notion of choice. Good for you all if you would check the box on the adoption forms that says “I’ll take anyone.” Most people wouldn’t. This is just one view…”

It’s a good point to raise in the discussion. Objectively, why take the harder road when you don’t have to?

But (and you knew there was a “but” coming) could you be cheating yourself out of unforeseen positives on that road? Could you be selling yourself and your potential to meet challenges short? I don’t know. There are a lot of parents out there who are much better equipped to speak on this, who have spent time in the trenches.

It’s tough. If I have a child, of course I wouldn’t wish for the child a life of sickness. Who would? (It certainly wasn’t in my parents’ plans for me, but then again, neither was all they have gone through and endured.) But I would be the first to say that that child’s life would be undeniably rich and fulfilling even in the face of illness. I’ve never had the luxury of health, not for one day on this planet, but I do not lament that things aren’t any other way.

The absence of choice is just an important facet of this discussion. You can’t always control the human body—who can conceive and who can’t, what diseases can be prevented or detected early and which ones cannot; you can plan for and hope for and expect good health (and all the accoutrements that loaded term brings) but that does mean it will happen, or that you have any say in that.

Sometimes you roll with the punches, and you do not have a choice. Challenges present themselves, even ones you want no part of, and somehow you meet them and keep on rolling. But if you’re lucky, you’re too busy living your unscripted life to even notice what you can or can’t choose.

Pragmatically, not everyone is this lucky. I know that. While I do not have many answers or conclusions, just lots of questions and speculations and thoughts that clearly run in circles here, I know at least one thing. I, too, am one of the lucky ones.

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