Category Archives: PCD

MuckFest Recap and Lessons Learned

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I have so many updates to share, but figured I’d start with a quick recap of the MS MuckFest 2014. As you may know, this event was the impetus for my running training program, and while the main reason we did it was to support my brother, an MS patient, and the MS Society, it was a very personal event and milestone for me.

While I love to exercise, I am not athletic. Growing up, I was either sick at home, in the hospital, or sporting a variety of casts, splints, and braces because I got injured easily and often. True story: I broke my finger typing once, that’s how brittle my bones were from steroids. Add to that my constant wheezing and coughing, and it’s easy to see why I was a bit…lacking in confidence in athletic endeavors.

I’d been feeling pretty good heading into the race—I’d run my longest stretches without stopping and maintained a decent speed all week, and the strength training I’d been doing had definitely made a difference. However, there is still so much I am learning about myself as a runner when it comes to pacing, strategy, and conditions, and let’s just say I learned a lot on April 26th.

We were part of a larger team but my husband and dear friend and I ran as a smaller pack…we certainly weren’t the fastest, but we did every obstacle, and that was one of my two major goals for the day (and I did it without breaking, straining, or spraining anything, even!) A couple of the obstacles were truly physically challenging, but most were mentally challenging, especially the ones that involved heights or extremely confined spaces. Most were things I had never done before, and I am already looking forward to next year’s event when I will have a better idea of what to expect and will run with the confidence of knowing I can do this because I have done this.

Honestly, the biggest challenge of all was the weather: It was beautiful the day before the race, but that morning it was 40 degrees and it was pouring (cold) rain the entire time. We were in the first wave and already the hilly course was so muddy and slippery that simply trying to run them to get to the next obstacle was an event. I now understand the power of the term “bone-chilling” because jumping into pools of mud in the freezing rain is pretty wretched. We could see our breath when we hosed ourselves off afterwards. Awesome.

Still, everyone there had a great attitude about it and no one complained. The way I see it, every year after this will be easy because our first year we did it in terrible conditions. Right?

Anyway, my other goal was to complete the 5K course without walking at all, and that totally didn’t happen. Most of my runs have been in fairly temperate weather, and I learned something important that day in the raw, freezing rain. I learned it again a few days later when I ran in 93-degree weather in Florida, with high humidity.

I don’t run well in extremes. Duh, right? But it’s actually more nuanced than that. Specifically, I do not start well in extreme weather.

Once we got into the meat of the race, I found my stride and was doing great, just like halfway into my run in Florida when my lungs settled down and I found a good rhythm. But within the first 20 seconds of the Muckfest, my lungs just closed right up and I was gasping before we made it to the second obstacle. I couldn’t believe it. It was like I hadn’t just spend eight weeks running 3-4 times a week and slowly building up my lung capacity. For a bleak moment I thought I was going to need to get off the course and dig up my inhaler, but I got some recovery time waiting in line for an obstacle and eventually my lungs calmed down.

I’ve since tested this a few more times, and if I start out fast, my lungs close up every time. If I start out fairly slow and stay steady with that, I have more speed and feel better later on. It takes my lungs a really long time to catch up to the work my body is doing, and unless I want to start burning, gasping, or cramping, I need to respect that is how my body works and roll with it. I’ve been reading a lot about negative splits, so this makes a lot of sense to me. I will never be fast but I’d like to be consistent and to build onto my distances—and I can only do that if I can breathe. So slower starts, especially in extreme weather, it is.

We’re already planning on next year’s MuckFest, and I have some 5K races in mind but know I need more training before I do them. My Couch-to-5K app disappeared from my phone (eight weeks of data gone!) so I’m starting over at Week 1 and focusing on adding in more speed (but not at the start!) and more hills this time around, coupled with longer treadmill runs. I still have a long way to go, but starting over with C25K has shown me that my lungs have started to adapt.

All in all, it was an awesome day. I never would seen me doing something like this, never mind enjoying it. I wasn’t fast, coordinated, or graceful, but I finished, and that’s enough for me.

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?

Take a Deep Breath

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The world is a decidedly less funny now. Yesterday, an incredibly wise, insightful, humorous, and courageous man succumbed to his lifelong struggle with cystic fibrosis. If you’ve read Life Disrupted, then you remember how sage Brian’s thoughts on life, love, and chronic illness were.

It was a privilege to know Brian and to share a part of his story. The past couple of years were particularly tough for him in terms of disease progression, and he made the decision to join the lung transplant list recently in light of that. In fact, he was called in for a possible lung match when things took a turn with an overwhelming infection. I cannot imagine the emotional roller coaster and devastation of that scenario, especially for the many, many people who loved Brian and supported him every step of the way and were hopeful for new lungs.

Today is a gorgeous sunny day, with low humidity and plenty of blue sky. It is the perfect day for all of us, especially those of us with respiratory problems, to take a deep breath. To inhale and exhale, and appreciate the simple gift that motion is.

It should never be as hard as it is for some.

I can’t think of a better time or a better reason to remind you about the life-saving gift that is organ donation, not just for people with cystic fibrosis or PCD, but for patients of all ages and diagnoses who are waiting—waiting for a cure, or waiting for a chance to extend their lives…simply waiting.

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.

In the Moment

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Various medical issues—some my own, most of them other people’s—have kept me away from here longer than I’d anticipated. Everything is okay, but recent events reminded me that health situations can change so quickly, that you can’t plan for some things, and that you have to be willing to adapt, switch gears, and sometimes, do what doctors tell you even if it wasn’t on your radar.

Living in the moment is not easy for me. I am a type A, detail-oriented, list-making person. My natural proclivity for being a control freak is certainly exacerbated by the fact that life with chronic illness very often throws all semblance of control out the window, but the natural proclivity is there nonetheless. For better and for worse, it’s who I am.

But right now, the best thing I can do is abandon my need for a tenacious grip on the future, to have a plan for every outcome and count on the details to soothe me.

When people find out you are pregnant, they naturally start asking a lot of well-intentioned questions: When are you due? Do you know what you’re having? How are you feeling? These are the easy ones to answer.

But then we get to harder ones: Will you have a c-section? Will you bottle feed or nurse? Are you going to have a second?

The short answer: Um, I don’t know.

Would you believe that in all of my many high-risk appointments and ultrasounds we have not discussed the actual birth? Partially it’s because I am only 23 weeks and we have time to discuss the rest, but it’s also because my entire team very much takes things day by day with me. Any change in labs, pulmonary status, infection status, etc and they want to know immediately. Right now, their focus is on keeping me as healthy as possible, because a healthier me means a healthier baby girl.

I realized a long time ago that having a medically intensive, high-risk pregnancy meant surrendering a lot of control to my expert doctors. Of course I have preferences—I’d prefer not to have major abdominal surgery—but I also know at the end of the day, we will decide what is best for the baby. I am not someone who can parse out a detailed birth plan, because my health will dictate what we do.

(I covered some of the risks of a PCD pregnancy in Life Disrupted but here’s a brief recap, for context: “normal” PCD infections last longer and are more serious in pregnant women, especially as lung volume changes, meaning I can reasonably expect to be in the hospital more often and for longer periods. The biggest concern is pre-term delivery, either since infections can trigger early labor or because we reach a tipping point where the risks of lower oxygenation outweigh the risks of premature birth. Whether I am induced earlier, need a c-section, or go close to full term and have a more traditional delivery depends on a huge number of variables, and again, I will do whatever my doctors say gives my baby the healthiest start possible. These are the major concerns; we’re juggling a lot of other competing issues too.)

I should also emphasize that though we have had some rocky patches so far, the baby is fabulous—healthy and thriving.

We haven’t discussed formula versus breastfeeding yet. If I can, I’d like to try; it depends on whether my medications after delivery are safe. I will defer to my team and what they say is prudent for the baby. Again, I have my own personal preferences but realize I may have to adjust my expectations for the best outcome.

Of all the well-intentioned and common questions pregnant women get, for several reasons the one about having more children is the one that drives me crazy. First and foremost, this pregnancy took so long to achieve and we continue to fight incredibly hard to keep her safe. I don’t want to fast-forward through this precious period of time, to think about hypothetical children. I want to focus on the child who is growing here in the present, the one we waited four years for. I do not take her safe entry into the world for granted.

But also? It’s a really personal, loaded question. I love having siblings and would love to be able to give our daughter siblings but it is complicated and for lots of reasons that I don’t need to detail here, it may not be in cards. Who knows what will happen, but I do know that I don’t need to be reminded of what I might not be able to give her, especially right now.

We’ve had some long, rough months and a lot of the journey remains ahead of us. Right now, in this moment, we are in a good, stable place. I want to enjoy this moment, and live fully in this moment. I am so grateful we are here, and that she is okay, and that is all that matters. As much as it goes against my instincts, I am relieved (happy) to just take things day by day. I can’t plan for everything. I can just do my best, listen to my wonderful doctors, nurses, and nurse practitioners, and hope that all our combined hard work pays off.

I realize this is a pregnancy-centered post, but I think the same applies to living with illness in general: health status can change in an instant, no matter what we do. We can’t spend every second worrying about what might happen or what else we could do to prevent things or we miss out on the present.

“As Long As It’s Healthy”

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Recently, a group of us had a conversation about how far back our memories went.

“Do you have memories from when you were two or three?” my husband asked me.

“Yes, but they are mostly traumatic,” I said. I was sort of joking, mainly for the benefit of the people around us, but let’s put some emphasis on the sort of.

As much as I hate to type it, and as much as they don’t reflect the much more diverse experience of my childhood, my clearest, earliest memories all involve sickness: wheeling my little pink suitcase down the stairs en route to a surgery at age two; standing in my crib in murky pre-dawn light, crying because everything hurt; the many-week stay in a hospital isolation ward in nursery school.

Don’t get me wrong, I had a wonderful childhood—parents who loved and advocated for me; older brothers who supported me; friends and family who worked around illness. When I could, we traveled to exciting places. I spent summers on Cape Cod, where I saw my cousins and grandparents every day and I could start to recover from the infections that ravaged me during the school year. I was fortunate to attend good schools and had a wide range of extracurricular experiences. This isn’t to say illness wasn’t ever-present, because it was, but it did not overwhelm or define these other experiences.

But my earliest memories are not the ones the pictures in photo albums portray. They are not the birthday parties at Papa Gino’s or the play dates or the Christmas mornings we lined up for pictures. They are vivid and visceral: the smell of rubbing alcohol as the IV nurse prepped my ankle since my arms were all used up; the harsh white sunlight of my room in isolation; the smell of the artificial strawberry flavor they used in my anesthesia mask over and over, a smell that to this day causes me to dry heave immediately.

This has been on my mind lately, as we prepare for the arrival of our long-awaited child. People often ask me if I have a preference for a girl or a boy.

“As close to full term as possible,” I give as my sole preference (mainly because when I say “alive” people look at me strangely.)

“As long as it’s healthy,” they will counter, and I nod my head.

(1. I don’t really like to use the word “it” in this context but it’s a common saying. 2. We actually tried to find out the gender last week, figuring we might have enough surprises to contend with during this pregnancy, but the baby had other plans that involved tightly pressing his or her legs together the whole time. Baby 1, parents 0.)

“As long as it’s healthy.”

It’s the universal comment people make, and with good reason.

Of course, of course I want my child to be healthy. I might not be able to give him or her many of the things that I had—for example, it’s far too early to consider siblings but it’s complicated terrain. But if he or she could grow up healthy, it would mean the world to me. Like any parent, if I could spare him or her my experiences and if I could avoid the heartache I know my mother went through watching it unfold for her child, I would be so grateful for both of us.

I know my most serious condition (PCD) will not be passed on to our child. Beyond that, we’re in the same boat all parents are: we hope for the best. We won’t give in to worrying about the what-if’s until someone tells us we need to. I joke often that my husband is made of hearty Midwestern stock and it’s true—his family members are literally some of the healthiest people I’ve ever seen, the type of healthy I didn’t even know existed until I met them.

“At least we’ve got that going for us,” I’ll say.

But sometimes, “as long as it’s healthy” gives me pause. Perhaps it’s because I over-think things or perhaps my tendency to be a bit contrary is exacerbated by pregnancy hormones or what, but sometimes the phrase gets old. Because this thing is, I wasn’t born healthy. In fact, several weeks premature and with collapsed lungs and pneumonia is pretty much the opposite of healthy. But I’m here, and living a full life, and have many positive experiences that outweigh the illness ones. I have no regrets.

So I smile and nod when people say this, as it is something I want so much for my child. But as I can attest to from my own life and from watching members of my family, we never know what curveballs will come our way. While health is my greatest wish, if something comes up I take comfort in knowing I have a lot of experience in illness and advocacy I can put to good use for our child. And I will be able to tell him or her that it is okay, that he or she might struggle more than others but that this life will be a wonderful one.

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?