Wednesday, June 26, 2013

forgetfulness

I delight in my daughter. Being her mama is the most precious privilege I've been granted. But parenting can be stressful. Physically exhausting. Emotionally draining. It can bring out my insecurities and drowned me in guilt. It can raise the stakes for seemingly innocuous decisions. It can dampen romance. It can hammer out a cleft in a rock-solid marriage.

When I spend time with my friends who don't yet have kids, I often find myself wondering what it's like. Granted, it wasn't long ago that I was in their shoes. They may be perfectly content in the pre-parenting stage of life, but I wasn't. I was unhappy, pining for a baby, wishing away my childlessness. My current vantage point is so different, and I have to admit that...at weak moments...I even find myself fleetingly envious of friends who still have the freedom to travel Europe...or even just see a movie. I find myself wanting to trade places - just for a day or two - with those ladies who can wear bikinis without having to subject themselves to a three-week juice fast in preparation. I find myself imagining what it would be like to sleep in...like they get to do...twice a week. 

The friends that I'm talking about aren't struggling with infertility (as far as I know). But I have many friends who are. And here is the crazy, shameful, painfully honest part. I have to admit that their are times when I - even I with my history of loss, IVF and now secondary infertility - have to bury the impulse to encourage these women to savor their child-free days. In those clouded, worn-out, desperate moments, I forget that becoming a mother didn't take away the freedoms and privileges of child-free living...infertility did. My life changed long before Harriet came into it. Like a ruthless sniper, infertility took out freedom after freedom, privilege after privilege, years before my daughter was in my arms. And the same is true for my infertile friends.


When I long to have a figure that's ever-ready for swimsuit season...I must not forget that many of them have already lost the thin, fit bodies they were used to. Their tummies bloat and pooch from the medications, prompting strangers to ask when they're due. Their breasts sag and leak as a result of late miscarriage. Their arms and legs go soft due to exercise restrictions. 


When sex was excruciating for six months after giving birth and a doctor had to burn off scar tissue to prevent permanent damage...I needed to remember that intimacy can be nearly unbearable for infertile women. A doctor is deciding when and how sex happens. It becomes scientific and unfeeling. Something that is meant to be so private has gone public, and they are mourning that loss...lying with their husbands in beds that might as well be housed in procedure rooms, feeling so alone.


When my love for my daughter literally steals my breath and makes my heart feel like it's going to explode, when the fear of something happening to her rises to the level of spiritual warfare...I remind myself that my infertile friends do know that love and that fear. Many of their worst fears have been realized. They love their miscarried and stillborn babies every day of their lives. Many others know the agonizingly ambiguous loss of their dreams. They love the children in their imaginations. It is a real, powerful, mama bear love that should never be dismissed or minimized. 


When I find myself fantasizing about having the freedom to go on vacation, have a nice dinner out, or sleep til noon...I cannot forget that infertile women lost those freedoms long ago. The money, time and energy that should be spent on fun and entertainment is now being used for appointments, procedures and medications. They can't take trips because they need to be close to the clinic. Their diets are restricted in order to maximize their fertility. Early morning appointments steal much-needed hours of sleep.


When mommyhood creates distance between my friends and I, when I feel I can't fully focus on them because I have a toddler vying for my attention...I must never forget that the friendships of infertile women suffer as well. Girls nights are replaced with baby showers and birthday parties. Except these events are always about other people...and other people's children. Friends struggle to know how to help so they offer platitudes and unintentionally minimize the struggle of infertility. Infertile women then close in around their pain and their once-dear girlfriends pull back for fear of saying or doing the wrong thing. 


When my husband and I deliberate over discipline issues or public vs. private schooling...I must remember that infertile couples are agonizing over impossible decisions as well. Should they do IVF? Should they donate their extra embryos? Should they increase their medication dosage and risk multiples? Should they switch clinics? Ask their parents for money? Pursue international or domestic adoption? Foster care? Should they just stop all this madness and try to find happiness elsewhere? Their minds are exhausted. The pros and cons lists litter the kitchen table. They feel stuck in a land of maybes, ifs and shoulds.

It takes only a moment for me to remember what it was like to be traveling that same road. And that's when a sincere prayer - a head thrown back, fists clenched, begging prayer - sprouts in my soul.

Lord God, hand them their dreams. They have already earned their parent wings. They are fully mothering the children they're waiting for. Fill - oh, fill! - their empty arms.




Monday, June 24, 2013

kindness

You must, must, must check out this entry on hope before you read any further or you'll miss the significance of today's post.

Andrew, Harriet and I had a wonderful weekend at the cabin. Old friends, good food and better weather than expected. Harriet had a great time playing on a big inflatable jump house our friends brought along. She loved it and Andrew is now convinced we need to buy one for her - a bigger one with three slides and a pool...for only $540.

He's serious.

But after seeing these smiles, can you blame him?






When we returned from the lake on Sunday, we opened our mailbox for the first time in a week. There was so much stuff squished in there, I could hardly pry it all out. Junk mail, magazines, bills...and a mystery package. We tore it open to find this...




I lost it. Just sobbed and sobbed. Andrew saw how touched I was by this sweet gift and he started to cry too. What made this even better was the fact that these prescriptions for hope were sent by an actual pharmacist - a childhood friend of Andrew's whom we see every other year, if that. She included a heartfelt note, handwritten on an official pharmacist pad:

I got a little bit behind reading your blog. I just wanted you to know that you inspire and give so many people hope! So many people are in your corner praying for all of your dreams to come true. Hang in there. You are a strong and beautiful woman and no doubt a great mother to Harriet and all of your future babies and those already in heaven. I know we don't know each other very well, but I think of you often and really hope you and Andy get everything that you could ever want. Hopefully this will bring a smile to your life.

Such kindness.

And I'll tell you something...the "pills" worked. But they didn't just restore my hope. They also provided inspiration and a new kind of joy - the joy that can only come as a result of the generous spirit and unmatched creativity of a woman I barely know.

A day and a half later, I'm still aloft on her kindness. I think we all are.

And by the way, our pharmacist friend chose Harriet's birthdate as the prescription number.

She couldn't have been more right on. No other day in my life brought me as much hope as the day my precious daughter was born.

But I have to say...today was a close second.







Tuesday, June 4, 2013

a good patient

I'm kind of a good girl, a rule follower, an overachiever. Besides a rough patch in junior high, I have always worked hard to be a good student, a good friend, a good employee, a good wife, a good mom. But lately, another role has joined the list.

I want to be a good patient.

Really though, what does that even mean? What makes someone a good patient? What are the characteristics that increase an infertile person's chances of pregnancy while allowing her to maintain her sanity, life balance, and the respect of her medical team?

Hmmm...

Is it positivity? Confidence? Hope? When we first started trying to conceive our second child, I was a confident patient. Maybe even overconfident. I was at a healthy weight and my PCOS felt under control. I was coming out of a fairly easy pregnancy, a blessing of a birth, and a year of nursing. Hadn't I proved to the world that I was meant for this? That all of that infertility stuff had just been a misunderstanding? I really, truly thought I could get pregnant on the first try. I felt like we'd done our time in the infertility wilderness and now it was our turn to walk down easy street. Well, after sixteen months of trying to conceive and two medicated cycles, that overconfidence turned into...underconfidence. (Just go with it.)

Lately, I tend to be more of a skeptical patient. I question whether these treatments will ever work. I question whether we'll have another child. I question whether I'm even willing to do in vitro fertilization again. I wonder about our clinic, our doctor, and especially our lab. I wonder if books, websites, alternative treatments and other resources are just gimmicks. Can a good patient be skeptical? Negative? Doubting?

A good infertility patient has to be knowledgeable, right? She has to really know her stuff - drugs, diagnoses, tests, acronyms, clinic statistics, all of it. I often feel self conscious about my level of knowledge about my own body and infertility in general. I've read lots of books and I've done research online, but I'm not a science/numbers person, so I have a hard time remembering lab values, hormone levels, all of that stuff. I honestly can't even remember how many eggs successfully fertilized during our IVF cycle. I greatly admire my fellow bloggers who are rockstars when it comes to the science behind the drugs and procedures. I want to be more like them. They're good patients.

being a good patient by wearing this goofy outfit

I think a good patient probably needs to obey doctor's orders, but maybe compliance has a dark side too. I get nervous about coming off as annoying or demanding, especially since infertility clinic staff members often seem kind of jaded...like they expect us to be anxious, crazy, angry and pushy before we even open our mouths. I don't want to call my clinic all the time, asking about this drug or that test. But it's also hard to sit down on the infertility treatment conveyer belt and stay silent. I want to be the type of patient that advocates for myself. That's why I insisted on trying femara instead of continuing clomid (excellent choice) and also asked to be put on metformin (no clue whether it's helping).

But I'd like to be doing more. It all goes back to the knowledge thing. I just don't know what questions to ask or what protocols bring to the table. Here's a question I have for you - how much contact do you have with your reproductive endocrinologist? We haven't seen Dr. C since June of 2012 when we had a consult. We weren't even ready to start medicated cycles at that point. We just wanted a plan in place so that we could prepare financially. Not only have we not seen Dr. C for a year; we haven't even spoken with him since July of last year when we were starting the embryo adoption process.

We could ask for a consult with Dr. C at any time. But we'd have to pay upwards of $200 for it, and the truth is, I don't even know what we would ask him. I could also request a call from Dr. C, but I just imagine myself saying something like, "So you're sure we're doing the right thing with this femara/trigger/insemination protocol?" And he'd say, "Yep." And that would be it.

I'm also considering asking for copies of my medical records so that I can study my body, my condition, etc. The thing is - I'm pretty sure my hormone levels have always been within normal ranges. Well, I guess there was that one time when my prolactin was high and a nurse asked if I was engaging in excessive nipple stimulation. Um...no. And excessive? What does that even mean? But anyways, it  may be helpful for me to use my medical record as some sort of personalized textbook. Both my husband and my mom are nurses, so they could probably help decode some of the medical jargon.

I think another thing that keeps me silent on the infertility conveyer belt is the fact that when I've asked questions in the past, I've often been given really lame answers. I'll ask about diet, exercise, guys keeping cell phones in their pockets, caffeine, vitamins, complementary medicine...and 90% of the time, I get a wishy-washy, often patronizing responses.

"There's no evidence to support or refute that."
"If _______ helped, we'd recommend it to all of our patients."
"Just keep doing what you're doing."
And my ultimate favorite - "It depends on the person." I want to say, "Well, we are talking about ME here. Can you answer the question based on ME? And if you can't, just make it up. Whatever."

On Sunday, I even called into the "Gyno Show" on the radio and asked Dr. So-and-so what infertile people should be eating. I asked if there were any good books or plans for us to follow. His answer? "Each individual should eat whatever she needs to eat in order to stay healthy."

Quite the aha moment.

When I pushed a little bit, he recommended a Mediterranean diet and suggested cutting carbs, so at least I got something out of him. And off the air, the producer recommended I listen to another show, called Dishing Up Nutrition. The whole show was focused on infertility and diet, so I appreciated her sharing that with me. And it was also kind of cool to be on the radio talking about infertility.

being a good patient by braving the twice-daily shots for eight months


I'll venture to say that good infertility patients probably do a combo of Eastern and Western medicine. They're probably doing acupuncture, taking supplements and herbs, and getting Mayan abdominal massages. I used to do this stuff. I got acupuncture. I took a few herbs. I saw a naturopathic healer. But it is so expensive, and since I'm not willing to give up my meds, ultrasounds and inseminations...western medicine wins the money war. Also, sometimes it seems like once you open the door to complementary medicine, it's hard to stop. There's always another supplement to take, another specialist to see, another yoga position to try. It's exhausting. It's too much....which is ironic because with western medicine, it feels like it's never enough.

So again...what makes a good patient? Is it fortitude? Serenity? Being on time for appointments? Cutting out sweets? Mental toughness? A strong support system? Unshakeable faith? A willingness to take risks? Lots of money? Good veins?

Usually my posts are more about flinging my thoughts into the universe than about getting something back, but this time, I would love feedback.

How would you describe a good patient?
What would you do about the lack of contact with Dr. C if you were in my shoes?
Have you ever requested your complete file, and if so, was it helpful?
Do you have any stories about times you felt like a good patient or a not-so-good patient?
If you're smart about the science of infertility, what should be at the top of my "to learn about" list?
If you're into complementary medicine, what supplements or treatments would you recommend?
Do those of you in the health-care field have any thoughts about what characteristics make patients (of any type, not just infertility) more successful?

If your comment starts to get long, feel free to abandon ship and create your own post on this theme, then comment here with a link to your post. I have been thinking about this stuff so much lately and would just LOVE to hear what you wise, dear people have to say. Thanks in advance for joining the conversation!

--------------------------

Quick update: Today was a good day. I started by listening to the nutrition radio show I mentioned above. It was actually really helpful. Listen to it if you have time. And if you don't, maybe the quick little lists I made while listening will do the trick.

Eat:
butter, cream, yogurt, cottage cheese, ice cream and milk (make sure they're all FULL FAT)
wild rice
quinoa
steal-cut oats
black beans
lentils
fish
grass-fed beef
avocados
spinach
kale
broccoli
brussel sprouts
12-16 oz protein/day
nuts
olives
coconut oil
olive oil
almond butter
eggs
sweet potatoes

Don't eat:
soy
protein bars
lowfat anything
frozen yogurt
canola oil and other refined oils
sugars
trans fats
soda
pasta
cereals
cereal bars

I also had a baseline ultrasound today, and while I was there, I requested a copy of my chart. I'm looking forward to diving into it and seeing what I can find out. The nurse who attended my ultrasound was wonderful. She thought it was a great idea to get a copy of my chart, and she answered several other questions as well. She also told me some specific things Dr. C had mentioned about this cycle, so even though I didn't connect with him directly, it was good to hear from him through her. It looks like we will likely reconvene with him after this cycle or the next...but I'm really hoping there isn't a next cycle.



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