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.]
 
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