Invisible Illness Week

This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It's great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!

On Books and Babies, Part 1 (Or, Where I've Been)

So, here’s a funny story.

My second book and my first baby were due on the same day.

The short version?

The former came a little bit early (but oh how she hung in there) and the latter was inevitably delayed, but in the end, they both came when they were ready.

The longer version? Stay tuned.

Because I think I might actually be able to resurface now.

Thanks for waiting for me.

(And let's not mention the major revisions in store, m'kay?)

On Anniversaries; or, What is Necessary

Last spring and summer, before things got more complicated, every time I walked by the baby’s room I would stop and enter. I’d walk in and touch something—the side of the crib, a stack of bibs that had been washed and folded, the small pink bunny we bought at the hospital gift shop the day we found out she was a girl. The room gets a ton of sunlight all afternoon, and that’s always how it seemed to me—quiet, peaceful, and full of streaming light.

While an amazing, incredible journey, pregnancy wasn’t always comfortable for me, and I am not talking about all the physical stuff of a high-risk pregnancy. I was awkward in maternity clothing stores, awkward about letting people know I was pregnant (if waiting 16 weeks to tell people beyond the inner sanctum is any indication), awkward even saying the words “I am pregnant.”

It wasn’t because I was waiting for something bad to happen, for that other shoe to drop, or anything like that. It was more that it was hard to believe it was really happening, and if I said it out loud, if it became so very real, I would wake up from the dream. So it was a learning curve, letting go of this safely guarded secret, meshing the real world and all the risks and variables with the dream world.

But her room was different. I know many people, those who have been through infertility and loss and those who haven’t, who wait on decorating and setting up just in case, and I totally get it. I was convinced I’d be that person, too. Instead, there was something comforting about getting it ready early, about the trappings of a baby having a place in our home. (Plus, I had a feeling the third trimester would be…challenging, so I wanted to be prepared).

Her room was my compass, my private act of rebellion and hope. Every time I went in there I smiled, every time I rocked in her glider I felt peace. I needed it to remind me everything would be okay, and to remind me it was not just okay to have hope, it was intrinsic to this whole experience.

Now, I walk into her room and there is a peaceful, sleeping baby or a smiling, wriggling baby read to play. The sunlight streams in just like it did last year and I catch my breath as the two worlds collide, the world of waiting and the world of living, and I exhale.

All of this is on my mind a lot as we near the anniversary of the call that changed so much. Of course I know from firsthand experience that such calls do not just happen at 3am; they happen as you are making dinner quite often, they happen as you’re doing errands, they happen as you are about to have lunch, like this one did. We’ve had lots of calls, but this one I remember in visceral detail.

It was this time last year I learned that it is possible to have your heart literally feel like it will stop beating from fear at the same time it wants to explode into a million pieces with happiness. That grief and sadness and joy and gratitude can co-exist—not easily or gracefully, but they can, and we need them to. Becoming a mother will be forever linked with being my mother’s daughter, and there is a lot to be said for that.

Sometimes, it is hard to believe how much has happened in one year, how much life has changed from last summer to this. It is not just good to be hopeful, but it is a necessary part of being.

On Being a (Chronically Ill) Mother

The next installment of the ChronicBabe blog carnival is all about motherhood and chronic illness, and given my recent post on trying to balance work, parenting, and chronic illness, this theme is certainly on my mind these days.

I’m working on a piece about Mother’s Day, infertility, and parenting, (and hey, did you know this week is National Infertility Awareness Week?) but I think it’s important to look specifically at the chronic illness aspect of things, too…and as the daughter of a chronically ill person, a patient myself, and the mother of a child with some health issues, I definitely have fodder.

The biggest thing that living with chronic illness has reinforced in my parenting is this: trusting my instincts. Our instincts. We bought all sorts of books and guides before she was born, but once she arrived, we quickly realized that getting to know her and paying attention to her cues was the best guide of all. We trusted her to let us know what she needed, and trusted our own intuition, too.

As a rare disease patient with a history of missed diagnoses, I have learned to be an advocate—to speak up when information is incorrect, to ask questions even when it is uncomfortable or awkward, to make sure my voice and my knowledge of my body and my symptoms are part of the dialogue.

As a parent, my job is to advocate for my daughter and to always work for what’s in her best interest. From firing her pediatrician when he continued to ignore her worsening symptoms to fine-tuning the balance between keeping her away from sick crowds during the winter season since she was very susceptible and also allowing her to socialize (she’s an outgoing girl!), I have more confidence saying “I know what is right for my kid”—and, more importantly, “I know when something is not right for my kid”—than I might have had I not lived through 30 years of illness.

I also think we are both more risk-tolerant than we might have been otherwise, especially me. She was such a tough little survivor all the way through this long journey of ours, and through her own health problems (which are under nice control these days), that it is easier for me to let go of fears and anxiety. I joke when I say it, but there is a lot of truth to the fact that if she could survive 37 weeks inside this body of mine, she can handle what the outside world throws at her.

It’s so easy to get bogged down in the labels and categories that come along with becoming parents (and I don’t mean Bugaboo versus Uppababy): Are you an attachment parent? A co-sleeper, a CIO-er, an E.A.S.Y. parent? Are you a breast feeding mama? Do you give your baby a pacifier, do you wear your baby, do you swaddle? Are you a working mom, a SAHM mom, or some variation of the two?

Parenting is never as black and white as these choices. They might contribute to the much larger picture of who we are as parents, but they are only as defining or absolute as we allow them to be. At least that’s how I feel, and how I feel about the possible implications of being a chronically ill mother. Or rather, a mother who happens to have chronic illness. Just as illness was never what I wanted to define my relationships or my career, it certainly isn’t what I want as a defining element of my daughter’s life.

And it isn’t.

But some days, making sure that isn’t the case takes more work than others.

There have been days where I have been really sick and run down and couldn’t imagine getting out of bed, but a certain squealing, chuckling little girl needed to eat whether I felt well or not. There have been days, especially earlier on, when trying to be the mother of a breastfed infant with health problems and the daughter of chronically ill parents who had their own needs left me flattened. There have been nights where, after another 18-hour day, staying up most of the night to watch her and hold her upright when she wasn’t feeling well was difficult if I wasn’t feeling well, either. But you do what you need to do in the moment and get through it, like any parent. Her needs come first.

Living with chronic illness already showed me how important it is to ask for help. Admittedly, this is much more difficult with my daughter because I want to be the one to do things for her and with her, but this is perhaps the greatest negotiation of parenting with chronic illness: I can’t be what she needs me to be if I am too sick.

It’s a line I am always balancing, and it took me many months to be able to start to make some of those choices—some days, that means she has to wait while I have my chest PT, some days her father does the morning shift, some days I abandon my word count to get some more rest so that the next day, I can give her all the energy I have.

I’ve come to see that those days where I have to shift things a bit still mean her needs come first—it’s just an alternative way of making sure she has two happy, (relatively) healthy parents who can give her what she deserves.

Moments

I do plan to post something coherent about work, chronic illness, and parenting very soon, but right now, while I am limping across the finish line of the semester, indulge me in some more unstructured thoughts on being a parent.

Time. As I taped my daughter’s Easter picture to the refrigerator this week, I realized a few things: this was the first time my own child’s holiday picture kept her cousins’ pictures company up there; this time last year, we already had three (of many) ultrasound pictures up there to greet us every time we went into the kitchen; it was this week last year that I finally went public about being pregnant. A year ago April 16, I felt my daughter move for the first time, and this year, almost to the day, she cut her first tooth and balanced on her own standing up for a few seconds. It is hard to wrap my head around everything that has changed in this past amazing and challenging year.

Relief. I was back at my (our) hospital for an appointment of my own this week. I’ve done my very best to avoid going back there, having spent far too much time there during the pregnancy. Anyway, it is such a different experience evaluating pulse oximeter results and medications without worrying about the impact of the numbers on a growing baby. Knowing her welfare is no longer tied so wholly and viscerally to my own health is reassuring, yet the relationship between my health and what is best for her is still a regular negotiation: to be the best mother I can be for her, I need to feel as well as I can. (See also: upcoming post on balance….)

Gratitude. “Every morning is kind of like Christmas morning.” We agreed about this the other night. It was almost 1 am and we’d both had a very long week, but none of that mattered, or matters. Knowing there is a wriggling, giggling little girl waiting for us every morning often makes it hard to sleep.

And, in lighter terms…
Humility. I was getting a bit cocky last weekend. In one day, I’d managed the logistics of swimming class, a play date, and a birthday party with nap time and meals (and final papers! And work deadlines! And a nasty, plague-like virus thing, oh my!) and everyone was intact and smiling. Clearly, I was too confident.

As I went to fold up the new stroller and head to our final destination, I could not figure it out. Like, 10 minutes into it, sweating and exasperated, I still couldn’t fold it up. I pulled tabs, I pushed bars, I moved wheels. I may have sworn a few times, and I may have even tried shoving the whole thing in the back still upright. With the guy who was waiting for my spot impervious to my motions to move on, I got more flustered and more inept. Eventually, he got out of his car to help me and he couldn’t do it either, but that didn’t make me feel better because I’d had lessons. Fearing a situation just like this, my husband, who is used to the manifestations of my spatial relations problem, had walked me through it several times. Thankfully, a second passer-by, the mother of twins, hopped out of her car and came to our rescue.

So a good fifteen minutes after I buckled my daughter into her car seat and tried to leave the parking garage, I was ready to go. The only upside is that this time, I hadn’t gotten lost actually getting to my car, which is a routine occurrence in parking garages.

So there’s that.

Let’s hope she gets her spatial abilities from her father….

As Long as Everything's Okay

It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy--just let her be okay--sustains us still.

Rare Disease Day

Today is Rare Disease Day. Check out ways you can get involved here.

Having rare diseases is an enormous part of my experience living as a patient, if not the most defining characteristic. Read a more detailed and well-argued version of my thoughts here, in my official Rare Disease Day post from a couple of years ago.

(Because, you know, were I to attempt something like that today, with work and symptoms and pediatric doctor appointments and awful rainy weather and physical therapy, I’d blink and miss posting today altogether. And that would be a huge advocacy fail.)

I will say, though, that the rare disease phenomenon was never more omnipresent than during my pregnancy and delivery. A high-risk, medically intensive pregnancy is one thing. A high-risk, medically intensive pregnancy with rare diseases? That’s a whole other kettle of fish. Limited data, limited testing available, limited understanding and awareness of the disease(s) on the part of health care professionals, and very limited experience working with pregnant patients like me is a natural byproduct of living with rare diseases. Like so many patients, I’ve found it frustrating when practitioners don’t know what I have, can’t pronounce it right, and lump me in with patients whose diagnoses are not the same.

But when that happens and it’s my baby’s health at stake, too? Much harder.

When you live with disease so few people have, you don’t have the same sense of community. You might not ever know someone with your condition in person, and you will likely never see a disease-specific walk-a-thon or awareness bracelet. Sometimes, I feel like the real community we have is the umbrella population of rare disease patients, where we are united by what makes us different.

Today is a day for all of us to show solidarity, to advocate for the research and awareness so crucial to our health.

What's Guilt Got To Do With It?

Guilt.

How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies' idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

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 clichéd, 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!