Category Archives: Chronic Illness

Dispatches from the Other Side

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In the Moment…

My daughter has her father’s chin and his nose, and it looks like she will have his big, bright blue eyes, too.

She also has his lungs, not mine, and I’m hopeful her immune and autoimmune systems will follow suit.

She has jaundice and some related feeding issues but compared to what we thought we’d have to worry about if she came when I was hospitalized at 28 and 32 weeks and when I went into labor at 34 weeks, these issues are definitely not major ones. It is all relative.

She only spent one night in the NICU and overall she is doing fantastic—she is a happy, calm, easygoing baby who grows more alert and active by the day, who has hilarious facial expressions and endearing little sounds and motions.

(And she is ours! There are times when it still does not feel real, this thing that happens for other people that amazingly, has happened for us, too.)

She is an absolute joy.

Pregnancy and Chronic Illness….
I consider the opportunity to carry her the great privilege of my life.

In many respects, I loved being pregnant: I loved feeling her squirm. I loved rubbing my hand on my stomach and feeling her kick in response. I loved knowing her movements and her patterns so intimately. But I cannot express the profound relief I have in not being pregnant anymore.

I see even more clearly now how tenuous the tightrope I walked on was, and just how difficult things were, especially toward the end. I should say that until the third trimester, and ignoring the bed rest/blood pressure situation and the preterm labor, things with my lungs could have been much worse, and we continue to be grateful for that.

Now, about the labor and delivery. We fought so hard for each day she remained on the inside, especially the last few weeks, but we’d reached the point where my body couldn’t give anymore. We were 37 weeks, and had gotten further than anyone expected, especially after all the hospitalizations the preceding few weeks. I staggered into my doctor’s office, hardly able to breathe. My blood pressure was creeping up higher and higher, and in the day since my last visit, I’d gained several pounds of fluid. Things were deteriorating rapidly.

We were sent upstairs, to the floor and staff we knew so well by now, and nurses and residents cheered us on, excited we were being admitted and this time, it was to actually have a baby.

Naively, we hoped that since I’d had painful contractions for a solid month, the induction would move along. I had strong, pitocin-induced contractions every two minutes for 24 hours before I got an epidural, and that time included a mechanical dilation that failed to progress things much and many other interventions. When the internal fetal monitor showed the baby was in distress, the epidural went in and we almost had an emergency c-section. They cranked up my oxygen further, and the baby’s heart rate improved. All told, 34 hours later, with two and a half hours of pushing, my little girl arrived, safe and sound.

The hardest part was the chronic illness dimension; namely, having enough air to push. I’ve never been on more oxygen in my life than when I was delivering her, even when I was in the ICU, but it got the job done.

(The whole labor/delivery was complicated and long, but my doctor and team were committed to avoiding a c-section unless it was truly a life-or-death matter because it would complicate how I recovered from the deterioration of my existing health conditions. Ironically, if I’d been healthy, they probably would have done a c-section at some point in the process.)

The best evidence it was the right time? After 34 hours of labor, after not sleeping for 40 hours prior to the induction, preceded by weeks where I did not sleep more than 1-2 hours a night, after a month of contractions—after all that, I still felt better within 5 minutes of delivering her than I had in many, many months. Compared to the third trimester, the ordeal of delivery wasn’t nearly as bad. Everything is relative.

Her healthy squall while she was weighed and assessed assured me she was doing very well, too. It was amazing to finally meet this little person whose face I’d seen on dozens of ultrasounds, whose heartbeat I’d proudly listened to during many non-stress tests.

She was here, and she was okay, and in so many ways, I could finally exhale.

As I started to mention before she was born, it was the emotional intensity of pregnancy and chronic illness, especially during the third trimester, that was crushing at points. It really hit me when we came home and I could move around without worrying my blood pressure would harm her or cause a stroke; when I could lay down flat without suffocating; when I could walk around the block without worrying about oxygen saturation and if she was decompensating; when I could go out in public places without worrying an infection would put both of us at great risk.

It also really hit me when I returned to the hospital for my two-week check-up. I tensed up being back there, back to the scene of so many appointments and tests, often several a week. This time, I did not have to update an anxious husband with the latest results or hold my breath until the technician told me she passed her latest test. I could walk by the admitting office without being escorted to an inpatient floor. I could go home and spend my day with a happy, smiley infant instead of worrying about prematurity, preterm labor, and various fetal outcomes.

In so many ways, I could finally exhale.

Parenting and Chronic Illness
Admittedly, I only have a couple weeks’ experience to discuss. What I can say is that chronic illness and this pregnancy did prepare me for some parts of life with a newborn. The actual labor-related pain/discomfort felt minor compared to everything else. Even a few hours’ sleep is way more than what I got for months, so I am used to functioning in this zone.

Someone commented to me once that the waiting makes all of this even more precious, and it absolutely does. Every single second of the long journey, every moment of waiting, was so worth it. And when I hold her and she snuggles up under my chin, or opens her eyes wide and meets my gaze, or I watch my husband rock her, all the waiting and the intensity are nothing but memories from a different life, a life that hinged on “if.” If we should do this, if she would be okay, if I would be okay, if we would ever have a family.

We have crossed over to the other side, one defined by her, not by uncertainty. We are so thankful she is doing well and so grateful she is in our lives. If the illnesses and stress make us even more mindful of how lucky we are and how precious she is, I’ll take that.

Biting My Tongue

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You learn to bite your tongue when you live with illness.

After all, if you responded to each comment about how you’re too young/healthy-looking/productive, etc to be sick, you’d be on the defensive far too often. I feel like the “but you don’t look sick” phenomenon is well documented so I’m not going to drag it out further, but we’ve all been there. It’s part of life with invisible illness.

Living with rare diseases brings its own share of comments and misunderstandings, from medical professionals not recognizing your diseases at inopportune times to blanks stares and choruses of huh? when people ask about your condition.

When you live with infertility, you need to bite your tongue so hard it often feels like the sheer will power required to hold back is more than you can give. Or, you blog about the ridiculous comments and the emotional and physical turmoil anonymously. No, really. I don’t think it’s a coincidence that the majority of infertility blogs I’ve read are anonymous.

(Also not coincidental? The fact that I have never blogged about the daily grind of infertility, or the nitty-gritty specifics of our particular 4-year journey. It’s a choice we made together.)

Like chronic illness, infertility has its own set of predictable annoying comments, from the insipid, offensive “Maybe if you just relax!” to the dismissive “You can always adopt” (right, because that’s such an easy, offhanded decision for all parties involved, as I wrote about here). And these are the lesser offenses, trust me.

Not only are such comments trite and eye-roll inducing, they aren’t even logical. Right. If only we had thought to relax more. That would have solved the whole missing-cilia-in-the-reproductive-system issue precipitated by my lung disease. Heck, by that logic, if I’d booked a week or two in a tropical location or Canyon Ranch and really chilled out, maybe I could have even magically grown working cilia for my lungs, too.

The point of all of this is that combining infertility, chronic illness, rare diseases, and a high-risk pregnancy has been many wonderful, amazing things…and it’s also been an exercise in patience and self control.

I am fortunate to have a great maternal fetal medicine team and office staff who are very hands-on, supportive, and proactive. No one was that familiar with PCD, but they did their reading and extrapolated what has worked with cystic fibrosis pregnancies to tailor a plan of action for me.

When I need more emergent care than what I can get in the exam room, I am admitted to the labor and delivery floor, where an excellent staff handles pregnancy issues efficiently: women in labor, women with UTIs, women with blood pressure problems or other pregnancy-induced conditions, etc.

But handling rare diseases that require oxygen, x-rays, pulmonary consults, and assessments regarding oxygen thresholds for developing babies? That is when I don’t fit in. Some people like a challenge and dealing with novel situations; some prefer to stay in their comfort zone. Patients like me do not adhere to their comfort zones. It’s a simple fact of life with rare diseases and high-risk pregnancies.

We’ve actually heard them arguing about where I should go, with them wanting to send me to a medical floor better equipped to deal with my overall health conditions. Yet, I need fetal monitoring and the bigger issue is not my disease symptoms but how they impact my baby, which is why my doctor is adamant (and 100% correct) that I need to be on the labor and delivery floor. I try not to take it personally, but it isn’t the best feeling ever to hear people explaining why they’d rather not treat me and wishing I were someone else’s problem.

The only time I really took it personally, though, was when I was brought up for oxygen and fetal monitoring (baby was doing well, thankfully!) and my nurse that day decided to open the conversation with this gem:

“Did anyone tell you it would be adverse for you to be pregnant?” in a really judgmental, snotty tone. She could have started with “How are you feeling?” or “Hello, my name is X” or “How are your vitals?” or any number of things, but instead she made it clear to me she didn’t approve of my presence or my decisions.

I was livid.

I thought of the years (years!) we put into this decision—the consults, the second, third, fourth opinions, the sacrifices, the challenges, the support and encouragement we got from specialists, and even the rude, insensitive comments we got from others.

I thought of the baby thriving inside me at 32 weeks, a baby who measured ahead of the curve and looked good on the monitor even while I was truly struggling. Wasn’t her well being and health an indication our painstaking decision was sound? And wasn’t my nurse’s job to treat me, not denigrate my choices and make me feel terrible?

But it wasn’t the time to have a battle. I needed oxygen and peace, and my baby needed those things, too. “If they told me not to have a baby, I wouldn’t be pregnant. What they did tell me was that it would be high-risk and intense but that we would be able to manage it,” I told her calmly, biting my tongue.

The next time I was admitted I had a fabulous nurse, someone whose energy and enthusiasm instantly made me feel better. More than that, she was really interested in learning about PCD and my other conditions, and jumped on the computer to look information up and ask me questions. She thought it was cool to treat someone with a condition she’d never come across. She was funny, compassionate, and utterly proficient.

Out of nowhere, she turned to me and said, “I am really glad you are doing this.”

And in that moment I realized that comments and attitudes like hers transcend all the frustrating comments lobbed our way…and I was really grateful I ended up in her care that day. To her, I was a patient who needed treatment and to her, I fit in just fine.

Waiting

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So, I feel like the girl who cried blog or something.

Yes, I have a bunch of posts in various stages of completion, and yes I have a lot to say.

But right now, all I can think about or write coherently about is waiting. We are 35 weeks and two days into this wait, thrilled to have made it this far and hoping we get some more time.

I am not a patient person; this is not new information. But this pregnancy—and the long, challenging journey to get here—have humbled me, have forced me to let go and take things day by day.

We waited a long time for this little girl. I waited a long time to share the news, because it took several months to trust this was real. For the first 18 weeks, we waited for the infections and exacerbations to die down and waited for the necessary isolation they entailed to be lifted. We had 3-4 weeks of relative normalcy, and then other complications emerged and since early summer, we’ve waited and watched blood pressure readings and pulse oximeter results.

We wait for Saturdays, the changeover day, when we complete another week of this pregnancy. There have been points in the past few weeks when we seriously doubted we’d see another Saturday with her on the inside, so as we approach week 36, we feel lucky just to be able to keep waiting.

Over the past few years, through the consults and tests and the risk assessments and the disappointments, I promised myself that if I were ever fortunate enough to have this experience, I would never complain about pregnancy symptoms, I would never be the infertile person who forgot the journey, and I would never, ever take any of this for granted.

I said this before when I wrote about high-risk pregnancy by trimester, but the “typical” pregnancy symptoms don’t bother me. In fact, they have always been reassuring: the severe nausea, the swelling and back pain, the interrupted sleep. They tell me things are still moving forward, they tell me that in many ways, I am just like any other pregnant woman, and that feels really good.

Besides, who isn’t tired and uncomfortable when pregnant? It’s an occupational hazard.

Anyway.

In terms of the high-risk stuff, the complications that mean I am at the doctor’s office all the time and have had more ultrasounds, biophysical profiles, and NSTs than I care to count here? Well, we went into this with our eyes wide open, so we are not surprised by it all. Granted, we didn’t expect some of the issues (like getting discharged on bed rest at 28 weeks for blood pressure or starting contractions at 34 weeks) but we also knew that things like that can emerge in any pregnancy.

I realize I haven’t updated much on the third trimester since it first started. As I said, we expected a lot of the challenges we’ve had and even expected to have surprises. What’s worth mentioning is that there have been good surprises, too. Namely, we expected the baby to do okay—after all, we have the best care available, and intense monitoring and proactive intervention.

But she hasn’t just done okay; aside from some recent bumps, she has thrived. Truly. Measuring ahead of the curve, being accused of being feisty, moving her diaphragm like a champ, kicking and punching all hours of the day and night…she has surprised all of us, doctors included, with her resiliency and buoyancy, even when my body is struggling. The closer we get to meeting her, the more amazing all of this is to me.

The other observation I have to offer is that while I expected the physical stuff and therefore am not entirely fazed by it, what I did not anticipate as readily was just how emotionally intense this trimester would be. The sheer amount of worry and apprehension, the speed with which the situation can (and does!) change, the prolonged state of ambiguity, the toll of spending days (and days) on the inpatient labor and delivery floor—it is much tougher than the physical stuff.

But every second is worth it.

We have both fought hard for every day of this pregnancy, particularly this last trimester. At this point, I feel like I have done everything I can for her, and it is out of my hands. Now, we need to trust in that and watch and wait for her cues. And it occurs to me that maybe that’s the legacy of this pregnancy: preparing me to do just those things when she’s here.

Pregnancy and Chronic Illness Webinar

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“Did you expect to go on bed rest?” a friend asked me recently.

“Well, we always figured it was a possibility, but we thought it would be related to my existing medical problems if it did happen. We didn’t expect PIH,” I said.

And that’s the thing about high-risk pregnancies and/or pregnancies with existing chronic illness. You spend a lot of time focusing on the known likely complications and risk factors, and have plans in place should the potential turn into reality.

But, in every pregnancy, high-risk or not, these 40 weeks are unscripted. Plans change, problems arise, and you switch gears.

Have a chronic illness and thinking about starting a family? Preparing for the known risks and dealing with the unexpected ones are just a couple of the issues Cheryl Alkon, a type 1 diabetic mom with a new book on pregnancy and diabetes, and I will discuss during our WEGO Health Webinar, “Pregnancy and Chronic Illness.” The webinar will run on August 2 from 8-9pm.

From pre-pregnancy planning and the “can versus should” questions to building a medical team to getting through a pregnancy and balancing your health needs with those of your growing baby, we’ll cover the basics of pregnancy and chronic illness, weighing in with our own life experiences, information from our books, and we’ll open it up for a Q&A session.

Already a member of WEGO? We look forward to connecting with you on August 2. Not a member yet? Joining the WEGO Health community is easy, so check out their site today.

In the meantime, start thinking of questions you have about chronic illness and pregnancy—we’re looking forward to it!

Bed Rest, Boundaries, and Balancing Chronic Illness

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I am all over the place these days. I’d like to say some of it can be chalked up to pregnancy hormones, but even my husband has concurred I have not been too hormonal this pregnancy (at least not since the first trimester!). That, and, well, things have been a little chaotic and the usual push and pull between life and chronic illness is more pronounced than ever. I am a conflicted jumble of emotions.

In the aftermath of the major health crisis I wrote about, I want to thank everyone for your kind thoughts and good wishes.

Out of respect for privacy I don’t want to divulge the specific details of my mother’s brain injury here. However, since it greatly affects me, I do feel is appropriate to share just that part of things.

She is making progress each day. For that, we are all incredibly grateful. But it is a long road ahead of us, one with many physical and emotional challenges. Having been an ICU patient more than once myself, I can say without hesitation it is much harder to watch someone you love struggle and suffer than it is to be the one in the bed. That’s my experience, anyway.

Each milestone is reason to feel good, but some days are really difficult for each of us, as they certainly are for her, and each setback is jarring.

I want to be the daughter I normally am in health crises, the one who visits the hospital and is there when she wakes up and can sometimes, just sometimes, make things a little better.

But right now, what I need to do to be a good mother to the little girl growing inside precludes being that daughter. Remember how I mentioned third trimester risks and worries when I covered a high risk pregnancy by trimester?

Well, two days into my third trimester the blood pressure issues I’ve had for a little while got worse and I was admitted into the hospital (yes, the same hospital we’ve frequented a lot this month because that’s how we roll), diagnosed with PIH (pregnancy-induced hypertension), and released on restrictive bed rest (bathroom/shower only).

So, seeing my mother is out, and I miss her. This has the potential to be a very long seven weeks or so—even before this pregnancy complication, the high-risk nature of our pregnancy and my existing health issues are such that 36 weeks is our gold standard, the benchmark we’re fighting hard to reach, and the benchmark we obviously hope and want to surpass.

Things could be a lot worse for my mother and for me, I know. And most importantly, the baby is doing fantastic; she’s ahead of the curve for growth and was called feisty during her biophysical profile. Thankfully, the problems in my body have not affected her, and my diligent, proactive medical team plays a large hand in that.

But, it is an emotional time of highs and lows, of joy and grief, of gratitude and frustration. It is such a simple word, but I am sad a lot right now, even in the midst of being so incredibly happy and excited. In the very same moment I have tears in my eyes about my family’s situation, I will feel my baby girl and automatically smile, the tears parting around my mouth.

What’s better, to have terrible things happen at the same time as wonderful things so the good buoys you up from the bad, or to have them happen in isolation so the former does not mar the latter? Since we rarely get a choice, I suppose it is not a productive question to ask.

I love feeling the baby and try to appreciate every single moment I am pregnant. But we’re also anxious about keeping her safe and while I don’t want to rush through this time, especially since it might never happen again, I think both of us also want to fast-forward several weeks just to make sure she reaches the end goal soundly and without further complications.

In another type of push and pull, the bed rest that is so good for the baby and the blood pressure is decidedly not good for my lungs, which need to be stirred up and moved around to prevent infection. It’s a negotiation I need to work out as the pregnancy progresses, since problems in my lungs most definitely mean problems for the baby.

In another amusing twist of timing and irony, my research-intensive book is due one day before the baby’s due date. On the bright side, I do not need to worry about getting bored while on bed rest.

Right?

Anyway, I am worried I am not expressing myself clearly, worried that reality of being grateful and positive while also feeling frustrated muddles the feelings. But it is possible to experience both at once, as confusing as it feels.

In the end, focusing on the good is the most important thing I can do, so perhaps I answered my own question. There is so much to feel hopeful about, in spite of sadness. I am so proud of our baby, proud that she is thriving and growing so well, proud that she is feisty because she will need to be.

I can’t wait to introduce her to my mother. (But I am willing to be patient so baby, stay put for a good long while, okay?)

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.

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?

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.

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.

“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.