Wednesday, December 29, 2010

Bring It, 2011

I did a brief 2010 year in review last time I wrote, but I can’t let the upcoming New Year arrive without some sort of reflection.

This time last year, we were battered from a long, tough fall but were also incredibly hopeful about the year about to unfold. In fact, in my New Year’s post I wrote:

“It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.”

What a prescient sentiment to kick of 2010, the year of the highest of highs and some truly significant lows. Having hope things would work out even when I could not see or know how was key to making it through some intense moments this year. A grueling pregnancy and delivery and a serious family health situation certainly demanded hope and faith, and the miracles of life and of survival were (and are) truly breathtaking.

I am someone’s mother. I still cannot believe that sometimes, especially when re-reading thoughts from this time last year, when so much was uncertain.

I do not like listing resolutions; I find them limiting. I’d rather work toward a larger goal. So, for 2011, my goal is to work towards finding balance. That might sound really general or clich├ęd, but my anxiety for the upcoming year is that I will have trouble with balance, so I’m trying to preempt that. I am someone’s mother now, and 2011 will be all about working everything else (full-time job, book to finish, relationships, household stuff, illness stuff, family stuff, etc) around that.

However, 2010 taught me some important lessons that speak to finding balance, namely:

Be flexible with expectations for myself. (Ongoing breastfeeding saga of 2010, I’m looking at you here).

Know that what works today might not work tomorrow. (This refers to baby schedules, body parts, you name it. Roll with it.)

Make those to-do lists a lot shorter and more realistic. (If bed rest didn’t clarify this, a newborn certainly did.)

Remember that somehow, everything will be okay. (I joke that if my daughter could survive 37 weeks in this body, she can take whatever the world dishes out to her and thrive. Kidding aside, sometimes I need to remember this perspective—no matter what unfolds, we’ll find our way.)

And lastly, take nothing for granted. (Then all of the smaller prioritizations, lists of supposedly important things, and conflicting roles somehow work themselves out.)

So while it’s a few days early, happy New Year. Thank you for reading and for following this journey, especially this past year. Whatever your goals or resolutions are, may 2011 bring you peace and happiness and as much good health as possible.

Friday, December 17, 2010

2010 in Review: The Year of the Baby

Leslie’s Patients for a Moment prompt for the last edition of the year is a good one: recap the year in posts, or pick a favorite post from the past year.

Indulge me while I do a little of both.

Clearly if you read this blog regularly you know 2010 was the year of the baby here on A Chronic Dose. After talking a lot about chronic illness, pregnancy, and parenting over the past few years, I kicked off 2010 all riled up about the insensitive attitudes and assumptions people have about adoption and parenting with chronic illness. Reading it over, I still get a little red in the face and animated, and hope to continue those kinds of conversations in the near future.

It was a long, stressful, and secretive winter and spring, but the post I am most proud of on this blog and probably more proud of than anything else I’ve written is when I finished the rest of the story of children and chronic illness in April, the backstory that I’d largely kept off the blog for much of our four-year journey towards being parents. I’ve never drafted and re-drafted a piece more, and even though it is a bit longer than normal I think everything is relevant. It represented everything that is part of a journey like this: hope, sadness, forgiveness, frustration, and most of all, thankfully, joy.

Wow, a lot has changed since I “came out” with that post, when I was 16 weeks pregnant and still holding my breath a little bit. When I talked about a high-risk pregnancy by trimester I had no idea I’d go on bed rest shortly after, that my loved one would suffer a catastrophic medical problem, that I’d be in and out of the hospital quite so many times, that I would go into pre-term labor and hold my breath yet again at 28, 32, and 34 weeks.

I’d rather skip ahead to my favorite post of the year, when I could type the words here at last and finally, we exhaled and focused instead on falling in love with our little girl.

Since then we’ve adjusted to being parents and juggling illness and work, and can’t wait to spend out first holiday season with our daughter.

So much has changed in twelve months. I am excited to leave at least some of the medical complexity and anxiety of 2010 behind us and focus on living our new life. 2010 gave us the most amazing, incredible experience so despite the ups and downs, that’s the note on which I am happy to end the year.

Friday, December 03, 2010

Illness Essentials

In the spirit of getting back into a blogging groove, I decided to answer the Queen of Optimism’s prompt for the next Patient for a Moment carnival.

With the holidays and gifts on my mind, (and various illnesses and symptoms in my thoughts a lot lately, too) it is also a good time to consider the various “must-haves” and necessities for life with chronic illness. We’re supposed to look at concrete items, not more abstract concepts like love, support, empathy, etc—though of course everyone could use those, too, healthy or not.

If you’ve read Life Disrupted then you know I have a whole section of surviving hospitalizations and you won’t be surprised at my number-one must have:

My laptop.

I very rarely leave home without it. Okay, on maternity leave I stuck with just the diaper bag, but typically I have my laptop with me wherever I go. I’ve had it with me as a patient in the ICU, I bring it to every doctor appointment, and yes, I did bring it to the hospital for what we fondly call The Longest Labor Ever. (Okay not really but seriously, it was pretty close.) It is always the first item I pack in my hospital bag, before the medications, the toothbrush, or the contact lens case.

Being sick involves so much waiting around, and with free wifi in most hospitals and doctor’s offices these days, I always want it with me in case I can catch a few minutes’ work.

As a writer, editor, and professor, my computer is where my life’s work largely happens. But beyond work, whether I am home sick or in the hospital, my computer is my connection to my IRL friends, social networks, and the outside world in general. It brings the world to me when I cannot participate in daily life. My current Mac is four years old and makes an incredibly sad noise when I open it due to a broken CD drive, plus the letters have worn off some of a lot of keys, but I am still smitten with it.

My iPhone is another must-have. I didn’t realize how useful it would be until I had one and now I cannot imagine not having it. When I am on oxygen or too sick to speak, I text words and photographs like a fiend. When I needed to update concerned friends and family each time I was in the hospital during the pregnancy, my iPhone was essential. Sometimes there are too many wires and monitors and it is much easier to whip out my tiny phone than it is to use the computer (especially when very pregnant!) I would update my husband, catch up on e-mail, and use the Internet during my non-stress tests, and even used the iPhone’s Voice Memo function to record the sound of her heart beating to share with our parents. There are also a ton of health-centered apps and tracking functions for the iPhone.

I am spatially challenged and horrible with driving directions and the map/directions function is huge for me. In fact, I will be using it today to get to my daughter’s appointment with a specialist at (literally) the only hospital in Boston I have yet to enter.

And on bed rest? Well, my phone and my laptop were a 10-week lifeline.

Other necessities? A BPA-free water bottle to track how much I drink. Fluids are important for breast feeding and also help loosen/thin out mucus, so it’s great to carry the bottle with me wherever I go to stay on top of that.

A smaller, more portable nebulizer that can even fit in my diaper bag if I needed it to, and back up inhalers so I have some for home, for my briefcase, etc.

A gym membership or exercise in general; exercise isn’t just good for the body as a whole (especially after a baby!) but is actually medically necessary for my lungs—if I keep things moving around in there, infections don’t get a chance to linger as much. If I time it so I exercise right before my daily chest physiotherapy, I can really maximize how much gunk I can cough up.

The obvious? My blue health insurance card. The numerous daily medications, the daily physical therapy, the medical equipment, the coverage for my specialists, the lactation support for my daughter, the coverage for my many hospitalizations and tests—this little card makes so much of that possible. I work extremely hard for my health insurance and have made a lot of sacrifices to get it, and know I am lucky to have comprehensive coverage. I cannot imagine life with chronic illness without it, and realize not everyone is as fortunate.

There are many more, but I am actually off to a doctor’s appointment right now.

Tuesday, November 23, 2010

Giving Thanks


This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about.

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite.

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

Sunday, November 14, 2010

Finding the New Normal

It’s about time I got back into a blogging groove, no?

My daughter is eight weeks old today. She is a smiling, happy, strong little baby who started laughing out loud recently, charmed by the beguiling fishes hanging on her bouncy chair.

The past eights weeks have blurred together into chunks of time: the first few days, where we switched gears from high-risk pregnancy and complicated birth to being parents and getting to know our little girl, and attending to her medical needs. Then there were a few weeks where we adjusted to some feeding problems and started learning more and more from her and about her.

The past few weeks, we’ve had so much fun watching her grow more alert, smile at us, reach for things, and start to imitate us. And we’re taking longer, deeper breaths: she is doing well and minor health issues are improving; she is a good sleeper and great about letting us know what she needs; without forcing it, we all seem to have fallen into some semblance of routine.

It seems like each week presents a new normal, a realignment of expectations and possibilities. Now, I find myself negotiating the whole back-to-work scene (expect a full post on these issues later). Right now it is part-time, but maternity leave came and went too quickly. My expectations for what I can get done and how much I can extend myself change by the hour, but I am learning to roll with that. (Hey, a lifetime of illness getting in the way of work was good practice for this!)

Before I was pregnant with her, we talked a lot on this blog about parenting and chronic illness, and one fear so many people shared with me was what to do on the days when we are not able to care for ourselves, let alone infants/children. The discussion in the comments thread revealed that it takes a village. This is true for any family with a new baby, but so incredibly important for parents with chronic illness.

And I’ve had practice negotiating that change, too—being acutely sick with a newborn. Now, I had a few things working for me: I was sick, but not very sick (for me)—I knew things wouldn’t deteriorate enough to send me to the hospital, and the whole thing only lasted two weeks. Also, thus far, our baby has a really easy temperament: she rarely fusses (and if so, with good reason); she sleeps well, for an infant; and she is very adaptable. But for a variety of reasons, there was no one to help me.

So we took it one moment, one hour, one feeding at a time, until we’d made it through the end of another day. She did not get walks or much fresh air that week, she did not get the very best version of me as a mother, but she did get my very best each day.

There are a lot of acute illnesses and medical calamities going on with people close to me right now. The details are not mine to share but they speak to another adjustment—balancing being a new mother and putting my daughter’s needs first with helping with the emotional and physical needs of others. A lot of the time I feel pulled in many different directions, and just at a time when I have a young baby who needs me there are lots of other demands, too.

In the end, the same principles that make so much sense with chronic illness apply—with work, with care giving, with new roles and expectations, we take it day by day, and know that today’s normal might not work tomorrow. And with a happy, healthy baby, we have few complaints.

Friday, October 22, 2010

Letting Go

I’ve thought a lot about filters lately.

How to sort out stories that are not ours but fill up so many spaces in our lives.

How to separate necessity from what is superfluous.

Here on this blog, how to incorporate the life-changing event of our daughter’s birth while keeping up a blog dedicated primarily to chronic illness.

How to discuss parenting and chronic illness while still maintaining my daughter’s privacy.

Today, at least, the thread that connects some of this is natural.

This week, I returned the digital scale we had to rent for a few weeks to carefully monitor the baby’s weight. Without getting bogged down in the details of jaundice and breastfeeding, I’ll say that it is not easy to get a sick, sleepy baby to eat. If a baby does not eat, she will not recover and a vicious cycle emerges. In our case, said cycle resulted in weight loss, many blood draws, pediatrician visits, lactation consults, hospital-grade equipment, etc.

She is now five weeks old (!) and steadily gaining weight, and is otherwise healthy and thriving.

I had the option to keep the scale another week, and I was tempted. So, so tempted.

In my world, data is king. After such a long, difficult, and medically intensive pregnancy, I am wired for data. By necessity, I never went more than a week or two at the most without an appointment or ultrasound. Biophysical profiles and their various indices were part of my twice-weekly language, and I carried spare sets of fetal monitor belts with me to the hospital for all the non-stress tests.

We pored over amniotic fluid levels, weight estimates, placental blood flow readings, and dutifully logged my own blood pressure and oxygen readings since they so closely correlated with her well-being.

When I commented to someone I needed some kind of scrapbook or binder for all her ultrasound pictures, I got a strange look. Moments like that remind me that our journey to have a child was not the norm. But the dozens of pictures that mark our journey are precious to me, now even more since I know the little person who rests her head on her arm or falls asleep with a hand across her face, just as she did then.

But it is time to take ultrasound pictures off of the fridge and out of the dingy white folder I lugged to each appointment. It is time instead to do something with all the pictures I’ve developed of her first few weeks.

And that’s how I feel about the scale. For a time, the constant stream of data was helpful and necessary. She needed to gain weight, and we needed to know if our various strategies were working. But she is over that particular hump now, and I need to learn to let go and trust her body and my body to get her what she needs. I need to rely on what is here and now, and not cling to numbers to tell me what I can see for myself.

It’s a big shift, after so many months of living on a precipice and waiting. But I think it’s a shift we all struggle with to an extent. So many of our conditions warrant close monitoring and frequent tests and streams of information we use to make decisions about treatments, drug dosages, lifestyle choices, etc. We need the data to make informed decisions, but data itself is not everything.

So I left the scale at the office. And in the few days that have lapsed, we have done just fine, she and I. I don’t know exactly what she weighs, but I don’t need to anymore. Besides, most parents don’t know this day to day. Instead, I’ll wait for her to grow into her 0-3 month clothes better, and I will smile when she hungrily, noisily eats, pleased that she is well enough now to wake up on her own to eat.

Things are headed to normal, and while I am not used to that, I am so grateful for it. In so many ways, data got us here, but now our job is to let go and live.

Friday, October 08, 2010

Dispatches from the Other Side



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.

Wednesday, September 22, 2010

Here at last!

I'm a little behind on this post, but I wanted to let you know that our baby girl arrived a few days ago, healthy and safe. She is doing great!

Fittingly, the labor/delivery was as complicated and challenging as the pregnancy, but it all worked out in the end and we're home and doing really well. I'll write a more thorough post sometime soon, but I did want to thank everyone for your ongoing support and encouragement during this pregnancy. Each comment, message, and e-mail along the way has meant a lot to us.

Thursday, September 09, 2010

Biting My Tongue

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.

Monday, August 30, 2010

Waiting

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.

Sunday, August 15, 2010

Seeking Simplicity

I’ve been quiet lately, but I want to thank everyone who has continued to check in on me, leave comments, and send e-mails. Your ongoing support and encouragement means a lot!

So, I’ve been working on this post on dealing with the medical establishment and being an active participant for a couple of weeks now. It has languished three-quarters of the way complete for several days, yet I just can’t pull it together.

For one, I’ve never found it useful or interesting to write about not feeling well or detail a list of what’s wrong. If I can take those illness experiences and draw something larger from them, great, but short of that, those kinds of posts don’t do much.

But there’s something else going on. I’m at the hospital several times a week for tests and appointments. I’ve spent too much time on the inpatient labor and delivery floor for someone who has not yet delivered.

I have participant fatigue, people.

And if I’m this sick of the medical establishment, that definitely won’t make for worthwhile reading.

So, I’m writing about blueberries.

Yes, blueberries. Aside from a brief flirtation with clementines in the first trimester, blueberries are my biggest (and really one of my only) cravings this entire pregnancy. It’s like Christmas morning to me when my husband comes home from the grocery store and tells me it was “buy 2, get 1 free” day for blueberries. I eat them by the handful when I need a snack. I eat them on cottage cheese for breakfast or lunch. I never tire of their crisp, sweet, yet pleasantly tart taste.

They are so simple and refreshing, a one-ingredient snack I just need to rinse and eat.

And simplicity is more important than ever when you’re gluten-free and pregnant. After all, being celiac has a lot rules and restrictions, and the dietary guidelines for pregnant woman are not insignificant.

The way I look at food has changed over the past 33 weeks. There is a lot more compromise and negotiation. I started eating (some) dairy again, trading off the phlegm-producing effects for the calcium-rich benefits for the baby. I never drank juice because I don’t like consuming a lot of sugar, but now I mix cranberry or orange juice with sparkling water and know that the baby loves it because she kicks vigorously.

There is also a much bigger desire to follow the “less is more” mindset when it comes to ingredients, and the negotiations continue. For example, I was thrilled to find a popular brand of yogurt that labeled several flavors “gluten-free.” I didn’t have to scour over ingredients, check corporate statements, etc to get some calcium (and coat my stomach for the many pills). Yet these flavors also included a lot of additives and two types of artificial sweeteners, which while cleared by the American Pregnancy Association, are still things to watch.

So what’s the lesser evil?

Spend some time clicking through the Center for Science in the Public Interest’s guide to food additives, and you’ll start reading those labels more carefully.

It’s a tough balance, because I am loath to obsess over every single recommendation and guideline, and I want to enjoy healthy food, not be scared or overly limited by it.

And that’s how we get back to the blueberries. We’ve always had a household low in processed foods but that’s more important to me now than ever. It is easier to eat fresh fruits and vegetables, all-natural peanut butter (nothing but peanuts on the ingredient list), freshly popped corn on the stovetop, and lean meats, chickpeas, and other legumes than it is to navigate multi-syllabic preservatives.

Plus, if you’re watching sodium intake like I am, the sky-high sodium levels in processed foods are another turn-off.

My life is completely overrun with complications and competing health priorities right now. I don’t need to deal with them when it’s time to eat a meal.

Simplicity wherever and however I can find it is so important right now. Luckily for me, my cravings seem to get me just what I need.

Monday, July 26, 2010

Pregnancy and Chronic Illness Webinar

“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!

Sunday, July 18, 2010

Bed Rest, Boundaries, and Balancing Chronic Illness

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?)

Tuesday, July 06, 2010

Heartsick

(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.]

Sunday, June 27, 2010

A High-Risk Pregnancy by Trimester

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.

Wednesday, June 16, 2010

Chronic Illness and Weather

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?

Wednesday, June 02, 2010

In the Moment

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.

Tuesday, May 18, 2010

Gluten-Free and Pregnant

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.

Tuesday, May 11, 2010

"As Long As It's Healthy"

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.

Thursday, April 29, 2010

Transitions





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.

Friday, April 23, 2010

Are You a Health Activist?

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!

Monday, April 19, 2010

The Rest of the Story: Children and Chronic Illness

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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