A Beautiful Day

To the beach

I'm heading out people...leaving for two weeks of fun in the sun (without the nanny - should be interesting!).
Ciao!

Postpartum PTSD and traumatic birth

Galloping Cat kindly brought this Wall Street Journal article to my attention today and I'm so glad she did - I've created a link and also pasted it here:

Birth Trauma:
Stress Disorder
Afflicts Moms
Study Suggests That PTSD
May Be More Common
Than Previously Believed
By RACHEL ZIMMERMAN
August 5, 2008; Page D1

Amid the debate over how to effectively manage maternal mental-health disorders, a new type of postpartum illness is gaining attention: post-traumatic-stress disorder due to childbirth.

PTSD is most commonly associated with combat veterans and victims of violent crime, but medical experts say it also can be brought on by a very painful or complicated labor and delivery in which a woman believes she or her baby might die. Symptoms can include anxiety, flashbacks and a numbness to daily life. Even as medical advances have resulted in many more lives saved during high-risk births, extreme medical interventions can leave a mother severely stressed -- especially if she feels powerless or mistreated by health providers.

PTSD is much less common than postpartum depression, which has become better-understood by the public as celebrities like actress Brooke Shields and former CIA agent Valerie Plame have spoken out about their experiences. The National Institute of Mental Health estimates that postpartum depression affects 15% of mothers.

The incidence of childbirth-related PTSD hasn't been widely studied. But a new survey suggests the disorder could be more widespread than previously believed. Of more than 900 U.S. mothers surveyed, 9% screened positive for meeting all of the formal criteria for PTSD set out in the Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV, a handbook of mental-health conditions. And 18% of respondents had some signs of the disorder. The survey, which included an established PTSD screening tool, was conducted by Harris Interactive for Childbirth Connection, a nonprofit maternity-care organization in New York. Separate earlier studies outside the U.S. had estimated the prevalence of childbirth-related PTSD at between 1.5% and 5.9%.

Shari Lusskin, director of reproductive psychiatry at New York University Medical Center, who wasn't involved in the survey, cautions that many aspects of PTSD still aren't understood, especially as it may apply to childbirth. "We don't want to overmedicalize a normal part of human development," she says. "Just because you had a traumatic birth, doesn't mean you'll get PTSD."

Still, the survey results are likely to add fuel to a debate about how to better identify and treat maternal mood disorders and whether widespread, systematic screening is warranted. New Jersey in 2006 passed a law that requires every new mother be screened for risk of depression prior to discharge from a hospital and again at her first post-birth doctor's visit, although women can decline the screening.

'Drugging of Mothers'

Other states, including Illinois and Texas, have passed laws to promote greater educational efforts about postpartum mental illness. And now the first federal law on postpartum mood disorders, which would fund research, treatment and public awareness, is working its way through Congress. Opponents say the law would lead to more "drugging of mothers."

Gena Zaks, of Baltimore, became suicidal with violent nightmares after the premature, emergency birth of twins in 2004, one of whom faced life-threatening respiratory problems. Ms. Zaks was diagnosed with several postpartum conditions, including PTSD and depression. "I was crying nonstop for six days in the hospital," says the 34-year-old mother. "Nobody said anything to me about depression."

Monica Bristow, a clinical psychologist in Redmond, Wash., who counsels mothers with PTSD, says one key to treatment is sharing the story of the trauma with a professional who can understand and validate the experience. Medication can be used to alleviate symptoms like insomnia and anxiety, she says, but nondrug techniques, like relaxation or gradual re-exposure to the trauma through memory in a constructive setting, can be more long-lasting and effective.

A history of sexual abuse or other trauma can also put women at greater risk for PTSD from childbirth, says counselor and childbirth educator Penny Simkin, of Seattle. She says discussing such information with a health professional before giving birth can help reduce the risk.

Maternity-care providers say the increase in the number of medical obstetric procedures in labor and delivery, like Caesarean sections and premature births, could be contributing to PTSD. These providers also note that childbirth-related PTSD became more of a focus of study only after 1995, when the American Psychiatric Association broadened criteria for the disorder.

PTSD, whether brought on by childbirth, natural disaster or some other trauma, can happen immediately, or months after the event. It may occur when someone has experienced an event that involves actual or threatened death or serious injury, and responds with intense fear, helplessness or horror.

Cheryl Beck, a professor at the University of Connecticut School of Nursing who researches birth trauma and was an adviser on the Childbirth Connection survey, says the mothers who reported signs of PTSD in the survey appeared to have a higher rate of medical interventions and describe feeling powerless in a threatening environment.

The survey also found that African-American women, those without private health insurance and women with unplanned pregnancies were more likely to have PTSD symptoms. The survey, called New Mothers Speak Out, available at childbirthconnection.org, also covered a range of other post-birth issues. Executive Director Maureen Corry noted the majority of mothers with PTSD and depression symptoms didn't seek professional help.

In 2003, Liv Lane spent 29 hours in labor. After a painful, vacuum-assisted delivery, she gave birth to a son whose lung had collapsed and whose heart had moved to the right side of his body, a condition known as pneumothorax. Ms. Lane, 33, of Shorewood, Minn., says the baby was whisked away and she was left alone, scared and unsure if he would survive. She says the hospital staff also ignored her calls that pain medication wasn't working. The baby, Ryder, eventually recovered.

At her eight-week postpartum checkup, Ms. Lane told the nurse practitioner she'd been sobbing every day and "fantasizing about driving off a bridge." She says the nurse suggested reading some parenting magazines. "I felt ashamed that I'd even asked for support," Ms. Lane says.

Flashbacks

A therapist later diagnosed Ms. Lane with PTSD. She began a year and a half of treatment that included psychotherapy. Ms. Lane says she then felt ready for a second baby. But when she got pregnant, her flashbacks, anxiety attacks and panic about her son's safety resurfaced.

She took measures to make this birth different. In consultation with her doctors, Ms. Lane switched hospitals and opted for a scheduled C-section, believing that a vaginal birth might re-trigger the trauma. Her doctor prescribed Zoloft at the end of her pregnancy to alleviate anxiety. She also made sure that her husband or another support person would be with her through labor. The experience was "wonderful," she says. Baby Truman is now 3 months old.

Bill in Congress

The proposed federal legislation on postpartum mood disorders, called the Melanie Blocker Stokes Mothers Act, named after a woman who jumped to her death from a Chicago hotel with postpartum psychosis, was approved by the House of Representatives in October. Last week, the proposal got caught up in a package of bills that failed to reach a final vote on the Senate floor. Democratic supporters say the measure, which doesn't include mandatory screening but does authorize a study about its benefits, could be back later this fall.

Amy Philo, of Frisco, Texas, is using her Web site, uniteforlife.org to help galvanize opposition to the measure, which she believes is designed to enrich pharmaceutical companies. "This bill will result in an increased number of women being referred and treated with drugs," Ms. Philo says. Ms. Philo, who calls herself a "Zoloft survivor" because of the adverse reaction she experienced after being prescribed the drug following a postpartum panic attack, believes antidepressants are unsafe and sees mental-health screening as an invasion of privacy.

Susan Stone, a clinical social worker in New Jersey and past president of Postpartum Support International, a nonprofit proponent of the Mothers Act, says the law's intent is to provide effective care, whether it's talk therapy, medications or some combination, to suffering mothers. "Every woman needs to be assessed individually," she says.

****
To say I feel validated is, uh, quite the understatement.

I'm doing better, by the way. My therapist has been spot-on about this since day one. We're working hard on hashing through the details of the memories and it's far tougher than I imagined it could be (I leave sessions feeling absolutely spent), but I feel like it's working. The flashbacks have subsided and, as you can probably gather, I am more motivated lately. My mind has been back to considering possibilities and not limitations. Right now my main challenge is being kinder to my husband. The therapy, designed to help me purge the "horror" feelings I get when I think about my deliveries, has brought out my otherwise neatly-stifled rage and I've really been lashing into him. Having been on the receiving end of depression before, I know it's a very sucky place to be (sorry Hon. I'm working on it. I really am.). But I'm hopeful. I know I'll learn to process this and come out shining on the other end.

I've been considering sharing more of my experience with this here on the blog, especially in light of this article - it may actually be of some help to other women who have been suffering out there, including myself. But I'm not sure I'm ready. I still feel too raw, too vulnerable, too angry to really get into it in such a forum.

All that said, thanks GC...knowing I'm not alone in this is a big deal.

Getting stuff done

Finally finished Baby V's heart quilt.

All about the tootsies

How cute are these soft baby shoes? The tutorial can be found here ~ a big thank you to the talented and generous Michele Q! They are very easy to make and I'm sorry I didn't try project this sooner. I recycled an old purse for the leather for the bottoms and used some Michael Miller monkey scrap fabric I already had in my stash for the lining and the uppers, so the total cost for these cutie pie shoes is almost nada, which makes me love them even more.

Green, cheap, and adorable - you really can't beat that, can you.

BFF: J & Lola

Taken last month.

I'm still trying to work out some vlogging kinks...ergo the quality (or lack thereof)...bear with me. One of these days I'll figure it out.

Visiting Quilts

Normally I visit my quilts; meaning when I visit loved ones I'll have the pleasure of meeting up with former projects and will inevitably be flooded with memories of my life at the time the quilt was put together.

This quilt however, came to visit me. It was one of the many things I've made my Gram throughout the years. This one needs a little repair and some love before I give it away again - this time to my father, who's been bugging me for a larger lap quilt - after his stroke his legs are constantly cold and this one fits the bill.

I made this Snowball Star for Grandma's 80th birthday, which was 13 years ago. When I got it back for mending via my mother, I kept smelling it for remnants of Gram - she always smelled clean and beautiful, with a hint of anything Estee Lauder. But it didn't. Left alone draped on the back of a sofa in an empty apartment for months while she tried to heal at a nursing home, it was instead stale and in need of a wash.

Once it dries I'll rework the binding. It was originally tied and I'm thinking of adding some quilting to hold it together for another 13 years but we'll see. My crafty plate has suddenly become quite full (which is a good thing).

Thanks again to all of you who have sponsored me for the PNH Walk...I'm humbled by your generosity.

Clothesline Love

Yup, I got myself a clothesline. Couldn't have a clothesline without a sweet clothespin bag, right?

Free tutorial found here. I'm dying to make more of these!

Floor Quilt

For your viewing pleasure: a playroom floor quilt, suitable for story time, color gazing, wrestling and naps on the go. I used old receiving blankets for the back, making it soft and warm and cuddly.

Heeding the good advice of my therapist, (who suggested that sometimes by simply just forcing yourself into activity you can begin to enjoy again that which once gave you contentment), I sat at my machine and just started sewing. I figured trying to finish works already in progress would be a good place to start. I'm so happy I did...it felt good to be creating again.

Car Jam

untitled

places to go

PNH: you can help change my life

Thanks to all of you who so generously donated thus far - we're at $1,420 which is wonderful but still far from our goal of $5,000. I know these are hard times (gas, food, utilities) and if you can't give, I completely understand. But no amount is too small and if you could find your way to somehow donate, you'd help a cause that will directly help thousands of people who are struggling with this often horrible disease. Many researchers believe that by unlocking the mechanism behind PNH we will discover the trigger for leukemia and many other cancers and autoimmune disorders. Beyond that, you'd have the gratitude of this humble blogger.

Because PNH is so rare, few people know about it. Let me tell you: don't let my looks fool you. Most of the time I look perfectly well and there would be no reason for anyone to believe I wasn't. But there isn't a day that goes by that I'm not affected by my illness - chronically, my red cells are constantly hemolyzing (breaking down)...my bone marrow for some reason doesn't make normal cells- they lack a certain protein which protects them from the immune response. As a result, every time I'm exposed to germs, bacteria, viruses (which is pretty much all the time), I hemolyze. Hemolysis makes me shake; my heart palpitates and I sweat then become very cold. Sometimes this will give me a fever. As you may know, red cells are responsible for oxygen - so with a diminished supply of red cells, I'm usually short of breath, especially upon exertion. Fatigue is an issue for me, and if I'm somehow unable to get a full 8 hours of sleep at night I will hemolyze even more. I am highly susceptible to dehydration and must be vigilant in my fluid intake - if not, I most certainly will wind up in the ER. When my red cells die, the remnants bind to the available nitric oxide in my blood. Nitric oxide is responsible for smooth muscle contraction. And your body's biggest smooth muscle is the esophagus. I often can't swallow, and I assure you - the GERD that develops from this is maddening. The best way I can describe the feeling of your esophagus freezing up is one of a cold sword being stuck down your throat into your stomach. PNH also causes clotting, and I must remain on anticoagulant therapy to ensure I don't develop a deadly embolism. Despite this, tiny clots often form and pool in my hepatic veins (near my liver). The pain this causes is tremendous - there is no position which causes any relief and no way to prevent it. The only thing I can do when this happens is wait it out and take some morphine. Periodically I will suffer a bout of PNH "arthritis" in which my joints freeze up and everything hurts. For this I'll take prednisone and lots of ibuprofen. PNH also affects my white counts and platelets making me more susceptible to infection and viruses. My immune system takes a lot longer to fight things off (a cold for you that lasts a week will stay with me for three).

The only current cure for PNH is a bone marrow transplant. For me, without a sibling match, this is a very dangerous undertaking. A BMT is highly dramatic, involving the harshest and most aggressive chemotherapy, isolation for up to 100 days, and an almost certainty of coping with GVHD afterward. Many people die from BMT complications. With three children at home, I can't take that risk (unless of course my bone marrow begins to fail completely in which I'll have no choice). PNH often will progress to AML (leukemia), and this threat takes a great emotional toll on me. Learning to live knowing you're very high risk for an aggressive deadly cancer is hard enough without being already sick.

I currently attend infusion therapy biweekly. This involves spending most of the day at the hospital. The treatment is like chemo except it is mild and I will have to remain on it for life and that is mandatory. It also costs over $26,000 EACH TIME I GO. This creates a lot of stress ensuring that our health insurance is covering it and that I'm not stuck with any copayments. If I miss an infusion, I risk severe illness for which I would need to be hospitalized.
After treatment I spend a good 36 hours feeling nauseous and wiped out. Thankfully, I bounce back after a few days. The treatment is an immunosuppressant which renders me even more susceptible to illness and infection. I have to be very careful.

The fact that I overcame infertility and survived two pregnancies and have three healthy children is nothing short of a miracle. PNH caused me to suffer severe preeclampsia and HELLP. The details of the complications are too much to go into here, but suffice to say it was dramatic and frightening. My boys all came prematurely (full-term babies for PNH moms who are lucky enough to be deemed healthy enough to have children is a rarity) and all spent over a month in the NICU. In short, no woman (or babies) should ever have to be faced with this. All in all, my boys are my reason to live and my reason to have hope and my reason to keep going.

When I was first diagnosed with PNH I was given 5-10 years to live with the caveat that "anything can happen." Once the shock wore off and I learned to live with PNH, I decided to live DESPITE PNH. I wasn't going to give up but instead do all I could to live as normally as possible.
I'm 13 years in now. And though it's made me an emotionally tough person and all the challenges have changed me in many ways for the better, I'm tired. I deserve better than all this. Enough is enough. I want to be healthy. I want to feel well. And I want to live long enough to be there for my children. Hell, I want to be around for THEIR children. I know full well that I will likely die from PNH someday. I just want that someday to be decades from now - not years.

I know this is a shameless plea but like I've said before, if I don't help myself, who will? Please go here and consider donating. It has the power to affect my life in untold ways... even if the research does nothing more than merely create medicines to better control my symptoms or stave off the course of the disease, any incremental improvement is monumental to me.

You can help change my life.

Thank you!

Any fellow bloggers out there who throw up a link (or two!) to this post will get a happy little crafted treat from me. Swear!

PS Thank you GC and Michelle!

Inspiration (courtesy of KT)

Walking with Grace
by Maithri Goonetilleke

The river of tears
flowed through my heart more times
than i can tell you my friend,
Silent tears, roaring tears,
tears which would fill oceans,
tears of the heart -
which were so much more than salty water,
But today in the gentle glow of morning,
I turn my head to the river bank and there a stone has washed ashore,
Bright and sparkling,
I have not seen it before. And yet I know its name -
Grace.
I will go pick it up and put it in my pocket.

The quilt that will take forever to finish

Grandmother's Flower Garden is a hexagonal quilt - which means it must be pieced entirely by hand.
It's slow (very slow!) work but oddly gratifying.

Some squares ready to be paper-pieced.

Some say this pattern derived its name from the fact that it takes so long to finish it...you'll be a grandmother before it's done. I tend to agree. But I believe it will be worth it - the hexagon is a wonderful shape to play with.

If anyone is interested in a basic tutorial, let me know.

KT's Gift

Remember I mentioned the gift that KT recently sent me? The one that's in the top 3 of the best gifts I've ever received? Well, here it is, and I said top 3 because I figured there must have been other gifts in my life that were in other ways just as cool to receive but frankly at the moment I can't even think of one:

Yes, it's a new way cool angry chicken clutch, this time one made just for me. But it's just a bag you say? This gorgeous little creation is far more special because of what's inside:

Twenty six poems and quotes, chosen by KT herself, carefully HANDWRITTEN, carefully folded. At the end of each poem is her commentary on why the prose is important to her or relevant to our lives as mothers and women and wives and great, best friends.

Initially, after crying like a baby as I was so touched by the sheer thoughtfulness of this, I thought I'd keep this very special clutch hidden away for safekeeping so that nothing would happen to it and I'd have it forever, but realized that really isn't its purpose. Instead I keep it out and available (it looks elegant and perfect on a round sidetable in our sitting room); I'm getting a little addicted to regularly pulling out a poem, reading, reflecting, and enjoying a feeling of being connected to not only KT but to my family and the world. It's more than helping me through this little emotional rough patch I'm going through - - it's giving me solace and good thoughts. And when a friend manages to do that from 3,000 miles away, well, she's a keeper. She's definitely taken things up a notch in the "surprise box of goodies in the mail" department and I have no idea how I could possibly return the favor - yet. I'm conspiring. It just may take a little time (and lots of creative thinking!).

In the meantime, because I'm not feeling so inspiring and I'm still kind of focusing inward and trying to work through some stuff (which I'm disinclined to share much of here), I'll let some of her choices inspire you in the next few upcoming posts.

But for now, let me just say thank you again KT (I know you're reading my dear). I so heart you.

*******

Mr. Smacky is currently coping with what I'm thinking is a nasty case of rotavirus, and I'm praying that the littles don't get it (hah!). This is the first time since he was an infant that he's really thrown up and it's totally freaking him out - he's been clinging to me like a vine, afraid to be alone in case it happens again. He's supersensitive and crabby and so listless. My poor little guy.

What's up with a virus going around in the middle of summer? Is anyone else out there currently nursing sick preschoolers?

Bump!

The walk website is up. If you can help in any way (no amount is too small!!!) please go here and contribute.
Thank you so much, from the bottom of my heart!

Chipping away at the anger

I suppose it's time for a brief update here -
first, thanks to all of you who offered words of support - they were (are) very comforting and I appreciate your thoughtfulness. Second, thanks IG and KT and Gleyse and LEEEEZ!!! and everyone who has so generously donated money so far for the PNH Walk...your kindness and willingness to help is uplifting and moving, even moreso considering the state of the economy. Thank you, thank you, thank you! My little red cells want to hug you!

I'm doing okay with this therapy thing...it appears I'm coping with some post-partum depression (yes, even now, a year out from the twins' birth) combined with some post-traumatic stress stuff. For now, we're going to try to avoid the drug route - my current strategy to drum up some serotonin is regular exercise. I'm walking regularly (and briskly) which, given my health, seems like the safest way to get back into some sort of routine. S has been a gentle, big teddy bear about all of this and I don't feel alone or afraid at all, which is pretty nice I admit. It's been interesting though, to peel through the layers of my psyche to find out what I've been shoring up inside. It took my therapist less than one and a half sessions to ask, "Where is your anger?" I've never been good with anger. I'm not a yeller, or a screamer. I really hate conflict. So I rarely confront, choosing rather to "take the high road" in situations and let it all bottle up inside me. For a long time now, I've believed expressing anger demonstrated a lack of control and/or a lack of grace. Anger was for haters, for the less evolved, for the victimized, for those who couldn't grasp the zen of things. And here I'm just realizing that by denying myself any space to feel mad at anything, I've been doing myself a gross disservice (perhaps my in-laws, who regularly lay into anyone randomly and without warning, screaming and carrying on when the feeling hits, are actually on to something ?- okay, that's extreme - I know - I take that back. They actually thrive on anger = not a good thing). Because as humans we simply need to feel pissed off now and then. We need to vent and let it out. We really do. When you don't do that, you, um, can really do a number on yourself. Anger itself has nothing to do with how evolved you are - how you act upon it does.

So my first lesson is to figure out a way to constructively let myself feel my anger. And start cleaning it out.
Even the anger stored way back in my mind's attic - the anger I've stored away so long ago that it's got cobwebs - has to go. I've got to clean it up and get rid of it. I have been an anger pack-rat. It won't be easy work. But it's important.

How do you show your anger? Do you store it away like me or are you okay with conflict? How do you let it out?

Z and Daddy

Taken this past spring, before buzzcuts.

Post nap, pre-snack

Dog days are here