Category Archives: Bronchiectasis

On Running and Breathing (at the same time!)

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It has been an extremely cold winter here in Boston (and from the sounds of it, so many places around the country.) Between absolutely frigid temperatures, a lot of snow and ice, and two rounds of viruses that lasted several weeks, I’ve had false starts with the Couch to 5K running program.

Wait, yes, you heard that right. I am attempting to run. On April 26th, my intrepid husband, brother, and some good friends are doing the MS MuckFest 2014 in Devens, MA., a 5k obstacle course in the mud. One of my brothers was diagnosed with multiple sclerosis six years ago, and my husband thought this would be a great way to show our support and would also be a great motivation for us to train together and do something together that is out of our mutual comfort zone together.

(Obligatory if completely sincere plug here: if you’re local and would like to join our team, we’d love the company! If you’d like to donate, you can do that, too.)

Now for some context, I actually really enjoy exercise and, illness and infections pending, I do it regularly. I’ve done years of ellipticals and Stair Masters, and more recently have really enjoyed classes (yoga, Zumba, hip hop, etc.) and home training workouts like Jillian Michaels’ Shred. It’s great for my mind and my stress levels, but pragmatically speaking, it is really important for people with PCD to move around and shake up these lungs of ours—ideally, this helps us cough and clear things out.

I am not at all athletic, but I have fun and I know my muscles are getting stronger, and know that is good for so many things. But I have never, ever been able to run. Ever. My chest tightens and I wheeze fairly quickly, and I get short of breath in a way I don’t in any other activity.

My goal is to be able to run a straight 5K prior to the obstacle course, because that would put me in pretty good shape physically and well, because I have never been able to run and I really want to be able to. Honestly, I am a little scared because for years I’ve told myself I can’t run, so it’s a big shift in thinking. I keep telling myself that lungs are muscles and though it might take longer than it does for other parts of my body to acclimate, and it might take longer than it would for someone without PCD and bronchiectasis, if I just take it step by step I can build up my lung capacity and train myself to breathe better when I run.

From friends and online forums, here are some basic tips I’m keeping in mind:

1. Start gradually—this is why an app like C25K makes a lot of sense to me
2. Breathe through your nose, since it warms the air and is better for your lungs
3. Cover your face in really cold weather, since the cold air effect is much more pronounced

Runners out there, what else would you tell a newbie like myself? And people with chronic illness and in particular, those with respiratory challenges, what helped you conquer the running demon? I appreciate any and all insights you have to offer!

Brain Fog

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It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

A High-Risk Pregnancy by Trimester

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We last spoke about chronic illness and weather, and then it went and got all humid on me and I fell into a black hole for a spell.

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester*
*I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester*
*Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

The Importance of Being Useful

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I went in for a lung check-up the other day and something truly unusual happened: I was quiet. Well, of course I really mean my lungs were quiet, because it was a very early appointment and my lungs are tight and quiet in the morning and get progressively wheezy and junky as the day unfolds.

I’d never had an appointment so early in the morning without an acute infection making things noisy.

“I’ve never heard you so quiet,” my doctor said. (After we’d talked about my book research, my other jobs, his grant writing, and lots of other stuff, because he’s the best.doctor.ever.)

“Ah, welcome to the morning lungs. My physical therapist always tells me I have two sets of lungs with totally different personalities, the 6am set and the 6pm set,” I said.

We moved on to other topics, but as I drove home, I thought about the many different sides there are to any illness, and any patient. I can be a wheezing, hacking, choking mess at night when my therapist arrives, but if you saw me at noon on a good day you might not even suspect anything was wrong.

That got me thinking about the days before my diagnosis, when there was only one “lung personality”—out of control. There was no chest PT, no understanding of the causes of my inflammation and infection or the complicated ways in which many of my medical problems were intertwined.

A few months ago, I wrote this post on disappointment, and the importance of writing a new script for ourselves, even when we might not want to. But I now realize that sometimes it works the other way around: sometimes good things happen, and we change our script in ways that make our lives better…but that doesn’t make it any less of a transition.

I was elated when, after months of diagnostic tests and procedures and a lifetime of serious illness, I got the right labels, the ones that matched my actual experience of illness. I was no longer the mystery lung patient, dodging whispers of supposed noncompliance and literally living on toxic doses of steroids.

But as awesome as it was, it took me some time to accept it was real, this newfound clarity. It took months for me to believe my rigorous daily regimen would actually improve my quality of life, that “normal life” could be something other than the snippets of time that occurred in between prolonged hospitalizations. I thrived in my new life post-diagnosis, but a tiny part of me, the part still fighting for self-preservation, kept wondering when things would fall apart again.

That’s not to say things haven’t been hard or my health hasn’t deteriorated, but several years later, I no longer doubt things in the same way. I’m realistic about my situation, but I also do not expect calamity to be an automatic part of my life.

I am not defined by labels so much as aware of their power to both limit and liberate. Sometimes good things happen in unexpected circumstances and you just have to let go and allow yourself the chance to live out the new script. Of course my PCD/bronc diagnosis is just one example of many, but it’s the one that seems most illustrative to me today.

The other day, the always interesting and often controversial Penelope Trunk had offered this pithy bit of advice on her blog: “You should be useful to readers each time you post. It feels better. For everyone.”

That’s something I think about often when I post. So, readers, I guess the take-away from this extended anecdote is this, something I’ve said before:

It is not unreasonable to hope for good things. That’s true in all aspects of life, but sometimes when you live with chronic illness, it’s an important reminder…and hopefully, it’s useful one, too.

Thyoliday Blues and Truths

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Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you’ve been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

Learning To Be a Primary Care Patient

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I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?

Grateful…

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Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

Tales from the Crypt…

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Contrary to a certain famous modern poet’s assertion, in my world November is the cruelest month. Okay, it’s arguably a toss up with December-February, too, but in terms of the lovely cycle of getting sick, falling behind with work, and missing family functions and/or social engagements, November is right up there with the best of them.

This past weekend was no exception: the tightened chest and spastic cough of Thursday night developed into the mini-plague that prevented me from attending a long-awaited family function Sunday morning.

(It’s not H1N1, though. Still hoping I avoid that long enough to get my H1NI vaccine.)

Anyway, I had to make a phone call early Sunday morning to let relevant parties know I would not be able to make it. My throat was hoarse and scratchy from coughing, and my voice itself was fairly faint because I wasn’t moving much air. It was definitely Crypt-keeper quality (as opposed to my other alter-voice, Darth Vadar, which is a little deeper and usually sets in a good two to three weeks later.)

My two-year-old niece loves the phone these days, and when she heard it was me on the other end, she wanted to say hello.

I started talking (read: rasping) to her as best I could, asking the kinds of questions two-year-olds are usually pretty good at answering.

Pause…pause….pause….

“Broken. Mama, it’s broken,” I heard her say.

“Not working,” she muttered, her voice growing muffled and distant as she pattered away.

Couldn’t have said it better myself.

On H1N1, Vaccines, and Differing Views

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I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

In the Headlines, In Real Life

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My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

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Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.