Heartsick

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(Disclaimer: the baby is absolutely fine.)

Medically speaking, something catastrophic happened to someone I love.

I don’t feel it is my place to share the details publicly, but suffice it to say phrases like “ICU” and “ventilator” are not the ones you ever want to associate with people you love.

It is too overwhelming to write about, but also so encompassing I find I can’t write anything in its place, either. So I’ll check back in later, when it is easier to compartmentalize.

Until then, all I can say is if you love someone, make sure you say it. All the time. No matter what else the conversation holds or what else is on your mind.

Because in the moments that teeter between life and death, the moments where you don’t know if hope or despair will come your way, it just might be the only thing that brings any comfort. At least it did for me.

For now, I (and we) will focus on the positive, on the daily progressions and small victories that are in fact momentous. We will focus on the potential for improvement, and focus on what has been spared, not what has been taken away.

But still, in the midst of progress and the slow road to recovery, there is much to grieve.

My heart is heavy.

[Updated to add: heavy yet hopeful.]

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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There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences.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.

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Chronic Illness and Weather

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I have a love-hate relationship with the weather.

Let’s focus on the love part first. I am a New Englander, born and raised, and have a deep appreciation for four distinct seasons and all that comes with them: the crisp golds and crimsons of autumn leaves; the first snow fall that leaves lacy patterns etched on the windows; the heady scent of hyacinth and freshly mowed grass in spring’s thaw; the nostalgic smell of salt water and suntan lotion that is quintessentially summer on Cape Cod.

As a person of extremes, perhaps it is not all that surprising that I love the extremes of life here, from the bitterly cold winter nights that require extra blankets, to the lazy, languid August days that call for iced tea and air conditioners. Just as my internal clock is largely set to semester-time, it too follows the calendar. Fall always feels like a fresh start, summer the time to catch up.

The thing is, though, weather doesn’t agree with me all that well. The winter season—okay, to be honest, this now stretches from Oct-May for my body—known for colds and viruses destroys me. I can usually count on one hand the days I am not acutely sick. My temperamental lungs respond violently to rapid fluctuations in the weather, so those weeks when summer turns into fall and winter turns into spring and the conditions go back and forth are always bumpy. And while summer usually means respite from the constant infections, humidity is horrible for my breathing, meaning on bad days I cannot take a breath outside.

Of course, not every day is humid; as I told my lung doctor yesterday, I have very good days and very bad ones in the summer so I capitalize on the good ones.

When I was really, really sick in high school (like missing months of school sick) my doctors suggested taking a year off and moving to Arizona to see if the climate helped my dysfunctional immune system. I refused because I didn’t want to give up my class rank (yes I was a bit crazy) and I don’t regret it. I spent a vacation in Arizona and wheezed the whole time anyway.

But now and again I do wonder if a different climate would suit me better. I lived in Washington, DC for a few years and really missed the sharp changes in season we get here in Boston. The climate there was soupy, swampy, and suffocating, and I’ve never spent more time as an inpatient than I did then. I adored living in Dublin and the cool, consistent weather was actually quite favorable, but there’s that little matter of it being just a tad far away.

Everything is a trade off. The cost of living is intense here, but there’s reason enough for that. Perhaps I would have fewer bad days (but who knows, really) somewhere else, but there are so many other things that go into our life choices: here we have extended family, friends, and a support network. That is always important, but especially important when you’re in a high-risk pregnancy and about to raise a child while chronically ill. It is a great area in terms of opportunities for my career. We live literally 10 minutes from one of the best hospitals in the world, where all my doctors are just a few floors apart. (Since I am there every week, this comes in handy).

So I’ll take the weather extremes in hand. Plus, if you’ve ever seen Boston in April or a Cape Cod sunset, you’ll know why it’s worth it.

Do seasonal changes affect your health and if so, how do you compensate? Does your health at least partially dictate where you live?

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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.

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Gluten-Free and Pregnant

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I’m being totally honest when I say that I am glad I was diagnosed with celiac disease. When you live with a lot of conditions that are hard to treat and manage even with lots of medications, knowing there is something wrong you can manage through what you eat alone is a liberating, empowering thing.

Most days, I barely even think about being celiac. The way we prepare food is now more of a lifestyle than a dietary chore. I know what questions I need to ask, I know the ingredients to look out for, and I know the best places for me to eat. I am always vigilant, of course, but it’s not like I wake up and think about eating gluten-free as a challenge or as deprivation.

I realize not everyone feels the same way, and I totally get why people take awhile to adjust and grieve over many things they can no longer enjoy. But for me, the diagnosis was a turning point, and brought about many positive changes in my attitude towards food.

I’ve always been ridiculously conscious of what I eat. Spend a lifetime (literally) on steroids, and you spend a lot of time passing on birthday cake (at your own birthday), sticking to the salad bar, and wondering at what point a diet consisting of 95% vegetables and chicken/fish will work for you. (You also break tons of bones, destroy your adrenal system, and have lots of other fun side effects but I digress.) In those days, though, I was focusing on calorie content, not necessarily quality.

All that changed when I began eating gluten-free, and I now find satisfaction in knowing how few ingredients are in each of the meals I eat, not how many calories are there.

I’ve noticed a further evolution in my attitude towards food since I became pregnant. On the one hand, I am more vigilant than ever about cross-contamination and accidental “glutening.” Coupled with the dietary restrictions all pregnant women are encouraged to follow regarding caffeine, certain fish, shellfish, lunch meat, soft/unpastuerized cheeses, alcohol, etc, there are certainly many things to keep in mind and avoid.

And I’m not going lie—with weeks and weeks of violent and long-last morning sickness (at one point I was conducting virtual office hours with a bucket in one hand and typing with the other), the idea of a simple saltine was (is) appealing.

But I don’t find the dietary limitations, well, limiting. I feel really good about what I put into my mouth. You see on message boards sentiments like “whatever you eat the baby gets first” and my doctors tell me the baby takes what he/she needs from whatever I eat. I’ve gone back to (limited) dairy consumption for more calcium, and started eating breakfast every day. Knowing the bulk of what my baby gets comes from cottage cheese, vegetables, nuts, yogurt, and lean proteins makes me feel like no matter how wacky my body is and how medically intensive this pregnancy is, I am doing something right for this kid. No processed food. No junk food. Nothing overly salty or fried.

Sometimes it is challenging to balance my (many) medications with prenatal supplements and vitamins since some need to be taken on an empty stomach and others on a full stomach, but I’ve incorporated smaller snacks throughout the day and have found somewhat of a groove.

Because I had to go back on steroids at one point in this pregnancy, and because of my history of steroid use and related problems, I am at an increased risk of gestational diabetes. We’ll see what the test reveals, but in terms of what I eat, I know I am doing what I can to set us both up for a healthier outcome.

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“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.

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Transitions

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This week is National Infertility Awareness Week.

I’m posting this a little late in the week because I’ve been struggling to figure out how to approach this on the heels of my recent pregnancy announcement and musings on what this development might mean for my blog.

If you’ve read our story as outlined in the announcement post, then you know that infertility is still very much a part of our experience and our pregnancy.

I’ve written about the complexities of chronic illness and infertility several times over the past several months/years, but still many of the specific details of our journey remain offline. That’s just what works for us. But over the last few years, I’ve found myself reading infertility blogs more regularly than I’ve read chronic illness blogs. The humor, grit, empathy, and authenticity I’ve discovered in so many women’s stories have been both informative and inspiring.

I never wanted to turn my blog into an infertility blog. Rather, I wanted to discuss infertility within the context of chronic illness and explore the overall challenges of building a family despite illness, whichever path that entailed. I’ve always been a strong champion of the idea that specific symptoms and disease labels are less important than the universal issues we face as patients: acceptance, guilt, or control, etc.

I’ve realized the same holds true in the infertility community. We all have different stories and different reasons for our struggles. In my case, it was easy to feel a little isolated: unlike so many women (and men), I don’t have reproductive problems aside from those caused by my lung disease. I mean, how many people are out there writing posts about a genetic lung disease making them infertile? The precipitating issue and the ensuing pregnancy challenges my illnesses pose are indeed rare, but the overall experience is similar: we all have to fight really hard for something that is natural and automatic for other people, and the avenues we ultimately take to build our families often differ from most of the people in our lives.

As I processed all of these thoughts this week, the link between what I wanted to say about the future of this blog and National Infertility Awareness Week suddenly became clear: it’s all about transition.

People who experience infertility transition from thinking pregnancy is a given to realizing it will be a struggle. Often, the question moves from when pregnancy will happen to when parenthood will happen, because so many of us who go through this do not end up with a viable pregnancy. It’s a transition in the expectations we had for our families and for the process we thought would be involved.

A colleague and friend of mine remarked that “the waiting makes it all the more precious” and I could not agree more. If there’s one thing we all share, it’s the waiting, the excruciating, mentally and physically exhausting waiting. For those of us fortunate to have some sort of a happy ending, hopefully the preciousness of it is universal, too.

I hope I never take a second of this for granted, knowing the four years of difficulties that went into it and knowing there are women who are not as fortunate, women who have to transition into totally new realities for their lives, ones that may not include children.

So while we’re discussing transitions, I so appreciate all the warm wishes and support as we transition from infertility to high-risk pregnancy and impending parenthood.

I do plan to discuss our pregnancy, but within the context of chronic illness and, again, the more universal issues of parenting with chronic illness. This won’t become a pregnancy or motherhood blog, and for many reasons: the privacy of our expanding family; my readers still living through infertility; adhering to the main purpose of this blog, which is to discuss chronic illness in young adults. I’m not a belly-shot person, and if I write letters to our child, they, like a lot of this personal journey, will remain offline. When I do have pregnancy stories and moments I think will resonate with the community of young adults living with chronic illness, I will definitely share them.

In fact, I’ve got a bunch of posts in mind already, tidbits I’ve been storing up for a few months now.

But this week? This week is about transition, so I will hold off. I’m getting there, and I’m so grateful to have you along for the ride, and so grateful to have learned so much from so many of you as we’ve progressed.

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Are You a Health Activist?

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Last week, I had the chance to attend WEGO Health’s first Health Activist Meet-Up here in Boston. It was my true public excursion in weeks due to infections and related pregnancy issues, and I am so glad I was able to go.

The WEGO folks are infectiously enthusiastic about health care and social media, and from the “pick three hashtags to describe yourself” to the lively chitchat before and after the breakout sessions, the vibe was friendly and dynamic. I had the chance to catch up with friends like Cheryl Alkon of Managing the Sweetness Within and meet several new bloggers and Health Activists, like Karen of Bitter-Sweet.

I was pleased to have the opportunity to lead one of the three sessions, one called “The Road to Activism: How to Turn Your Passion into Activism.” As I prepared for the event, I thought about what it was I was passionate about and what it takes for anyone to turn passion for an idea or a cause into activism.

I used the following steps as initial talking points:

1. Identifying Your Passion
2. Recognizing Your Strengths/Becoming an Expert
3. Finding Your Voice
4. Locating Your Niche/Building Your Community

Luckily, I had a dream group of articulate, interesting people and from those brief talking points, a true conversation emerged. Of the many take-away points we covered, one that stands out to me is the idea that everyone becomes a blogger, author, advocate, etc (in sum, a Health Activist) for different reasons and wants different things from the community in which they join. For example, the newly diagnosed might want validation or commiseration, while “veterans” might be more interested in sharing experiences or offering wisdom from experiences. Successfully turning passion into activism depends partly on knowing what you offer, what you want out of the experience, and connecting with like-minded people.

In my case, I’ve always been passionate about writing and after an entire lifetime of illness and hospitals, I realized maybe I could use that passion to share experiences and lessons learned. My passion is chronic illness in younger adults, because so many of us live with it and face challenges unique to this stage in life. As I joked the night of the event, I am equal-opportunity when it comes to chronic illness—I don’t focus on any one condition or disease, partly because I have several conditions, because I am a rare disease patient, and mainly because I believe the universal challenges of life with illness unite us.

But that’s not what works for everyone, and that’s why I think the whole idea of turning passion into activism is so interesting—there are so many outlets and ways to express ideas and build communities. I think the robust diabetes online community is a great example of how successful a community of people contributing perspectives on life with a particular condition can be.

What’s your reason?

Other compelling questions we discussed that evening were deceptive in their simplicity:

What do we mean by activism? When do you become an activist?

Some of us were of the opinion that it can happen when you don’t even realize that’s what is actually happening. It could be the first time you write a blog post, the first time you get a reader comment that really stays with you, the first time you put yourself out there.

But I’m interested in what you have to say-what do you think when you hear the word “activist?” When does that transformation from merely being passionate to becoming an activist occur?

Thanks again to WEGO Health for a great evening that set the stage for relevant and inspiring conversations. Looking forward to the next meet-up!

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The Rest of the Story: Children and Chronic Illness

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In some ways, I’ve been drafting and revising this post in my head and heart for almost four years.

I first touched on chronic illness and infertility in August of 2006, with this post on numbers, statistics, and hope. Since then, we’ve talked about can versus should, the tough decisions potential parents with chronic illness face, and other universal aspects of having a family. But the behind-the-scenes story? That was never fodder for this blog.

It’s been 44 months since we first started trying to have a family. That’s three years, eight months. Not as long as some, I know, but too long. About eighty percent of our marriage, in fact. Forty-four months later, I see this long journey as characterized by moments of awareness, a series of changes in thoughts and assumptions that challenged our perspectives.

There were moments of realization:

Along the way, I fell completely in love with other people’s children, and realized emotionally what I knew intellectually: unconditional love does not adhere to boundaries of biology or relationship. Parenthood does not depend on pregnancy, something I knew but didn’t really know until I knew. With that, we both realized that no matter which path we took to build our family, we would do the right thing for us and it would be our first choice, not a fallback plan.

I’ve realized no matter how hard we try and how much they really do care, there are people who will not understand, who cannot give us what we need or speak the words we are desperate to hear. I’ve realized that this is okay. I’ve learned to let go.

Similarly, no matter how many consults and additional opinions we’ve sought, no matter how meticulous and deliberate we have been about our decisions, there will be people who judge. And while hard, that too is okay. I’ve realized that doing right by each other and our potential child is all that matters—with that realization comes some freedom.

There were moments of isolation:

Not surprisingly, my ongoing fascination with language spills over into this journey. If you take the adoption route you become fluent in terms like open adoption, or the semantics of birth parents, first parents, adoptive parents, etc. If you look into surrogacy, you’re flooded with euphemisms: at our hospital, the preferred term is “gestational carrier,” and the recommended agencies have all sorts of feel-good names. If you pursue assisted reproduction you start speaking in code: IUI, IVF, 8dp3dt, BFN, BFP, PIO.

But either way, you no longer speak the same language as most of the people around you. You speak the language of “if,” when so many others take for granted the “when.” And some days, surrounded by the “when’s,” the easy talk of when pregnancy will happen and the carefree assumptions about when siblings will arrive, is a lonely place to be.

In another twist of language, I learned that putting the words “very early” in front of “miscarriage” does not mean it is not sad. I wondered if anyone could see the shadows of that loss when I wrote about disappointment. Private sadness is indeed isolating, however necessary it is.

Of course, there were darker moments:

I remember one particular day last spring. It was the first bright, sunny day that thawed winter’s slush, and after a terrible doctor’s appointment it was the first day we truly felt, however fleeting, there was little hope. What good were all these options people kept talking about, I kept talking about, if none of them seemed attainable?

“You know the hardest part of all this? Waking up and going through the day and acting normal when it feels like the world is crashing down,” I said to my husband. For many weeks, when I woke up and realized the situation had not changed, I felt I was in a living nightmare. I hated people to hear or see me cry, so I simply didn’t talk to many people.

Another sunny spring day we all waited in a hospital waiting room, anxious for the arrival of a much-loved baby. I kept jumping up to take cell phone calls in the hallway, re-scheduling consults and high-risk assessments. I was angry, not because I was being told I might never carry children while hanging out in the maternity ward, but because even on this happy day when I wanted to be fully present in the joy, infertility was literally stalking me. It had already taken so much.

We made a cocoon for ourselves so we could filter out the white noise and weigh what we wanted versus what is most fair to a child. Anytime you bring the “can versus should” element into a conversation about children, the responsibility inherent in that is staggering. We take that responsibility more seriously than anything else in our lives.

In these moments, I, we, have learned sadness and grief, frustration and disappointment. But we’ve learned much more. As hard as it was to hide what weighed us down, it is even harder to hide good news, joyful news, especially when it has been such a long time coming and has exacted such a toll.

And so I am pleased to share what is truly a moment of joy: This fall, we are expecting a baby.

It still feels strange to type those words. Despite the many ultrasounds, the many doctor appointments, the talk of showers and strollers, sometimes it is hard to believe this is happening, this thing that happens for other people.

I am incredibly grateful and excited. When I first found out I cried so hard my poor husband thought I had yet more disappointing news for him and instantly went into consolation mode. I simply did not have the words to explain happy tears.

We have pictures proudly displayed on our fridge and multiple teams of doctors monitoring every breath, doctors who never forgot to say “congratulations” amidst all the precautions and variables. What a beautiful word.

We kept this news to ourselves for a long time. It’s high-risk. I’ve already been hospitalized. We’ve lived through loss. I have jobs and policies and details I needed in place. We are fiercely protective of this little one. But at 16 weeks I am getting comfortable telling people, and I love sharing news that is actually good.

And through this all, there were (and still are) moments of relativity:

Infertility was merely the starting point. Infertility with a guaranteed high-risk pregnancy and chronic illness? It’s a tough combination to contemplate, but everything is relative. We have to focus on the tough road ahead of us, and I know we can do it.

Baby showers and pregnancy announcements never bothered me, and seeing babies always brought me joy instead of reminding me what I did not have. I pretended I was immune to a lot of the emotional fallout from infertility, that I was focused solely on risk analysis and decision-trees. Not true.

Now that I am pregnant, I feel the aftershocks of infertility. I see the many bits and pieces it chipped away, and the bits and pieces the high-risk nature threatens. The first time I checked out the maternity section of a clothing store, I couldn’t relax. I was in a cold sweat; I felt like a trespasser. Now that I’m closer to needing new clothes, it’s getting a little more real, a little easier.

After 44 months of this, my gut response to the topic of so-called “push presents” is, isn’t the baby the gift? My mother asked me recently if I had a preference for a boy or girl. “Alive,” I told her. All I want is a baby as close to full term as possible and for both of us to come home from the hospital and be okay. That is the gift. That is everything.

Lastly, there have been moments of growth:

We often sit at night in my husband’s office, soon to be the nursery. He uses the desktop computer, and I sit on the bed with my laptop. We talk about paint colors, and even well into the first trimester I would stop, mid-conversation.

“Are we allowed to talk like this, to plan a nursery?” I ask.

“You are pregnant. We are having a baby. It is okay,” he reassures me.

So I exhale and smile and think about meeting this little person whose waving arms and bent legs on the screen make my husband smile from his eyes and put all the oxygen I need back in the room as if by magic. And I allow myself.

And when I get overwhelmed by the realities of this high-risk pregnancy, when I worry that everything I am doing to keep us both healthy will not be enough, I think of this baby squirming around, a baby who is thriving. This is the only type of pregnancy I will ever know, and I embrace it fully. I allow myself.

I am proud of us, proud that we came through this journey intact, a better team than we started. We always told ourselves that somehow we would be parents. Only a few months into dating, we knew this was what we wanted for each other and with each other. We had no way of knowing just how long a journey this would be or how it would end, but we wouldn’t change any of it.

So I am working on a new lexicon, one centered on “when.” We talk about the baby’s library or imagine walking him or her to school up the street and talk about the kind of parents we want to be, and it is no longer strictly hypothetical. We imagine new moments, new possibilities, and we are buoyed by the one word that started this whole conversation 44 months ago, the one word that is important than ever: hope.

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