Misdiagnosis and Missed Diagnosis: Part 1

Share Button

Trigger Warning: This is part 1 of a 2 part story of my misdiagnosis and missed diagnosis after giving birth in 2009. This post contains some references and details about Postpartum OCD and Intrusive Thoughts. If you are feeling particularly vulnerable and prone to triggers, you may want to avoid this post until a later time. 

In July of 2009, 3 months after having my first baby, I finally admitted that all was not well in my world. For 3 months, I had been falling deeper and deeper into a spiral of awful. Sometimes I felt indescribably angry. Sometimes I felt a deep sense of sadness and despair and would just cry and cry and cry, or maybe I’d be about to get out of the car in the parking lot at the store and suddenly burst into tears and not even know why. Sometimes I felt completely numb; I would just sit in my rocking chair holding my beautiful little girl, staring off into space, not really thinking or feeling anything at all other than blankness and emptiness. The worst of all was pictures and thoughts that flashed unbidden into my mind. Thoughts and pictures of dropping or throwing my daughter down the stairs. It terrified me and I would actually cancel appointments if I was upstairs because I didn’t want to carry my child on or near the stairs and those pictures and thoughts become reality. As soon as they entered my mind I would chase them away and hug my baby a little closer and pray “God, what’s happening? Please forgive me and make this go away”. I had no idea what was wrong with me.

At my 6 week Postpartum check up at the Wilford Hall Medical Center OB/GYN clinic, I filled out the  Edinburgh Postnatal Depression Scale questionnaire that I was handed. My answers clearly indicated that I needed further screening but the Nurse Practitioner who saw me just put it to the side without saying anything and never really asked how I was feeling, so I figured that what I was experiencing must be normal (news flash: it wasn’t). Things kept getting worse until eventually, one night in July, I found myself standing at the top of the stairs while everyone else was asleep thinking that everyone else would be so much better off without me if I threw myself down the stairs. I walked away and started to go to bed and then thought that it would be easy to take a massive amount of the painkillers my husband had left over from ankle surgery and just go to sleep and not wake up. I called the chaplain and he met me at the Emergency Room.

I was diagnosed with Postpartum Depression and transferred to a psychiatric facility in San Antonio, since WHMC (the military hospital on Lackland Air Force Base) only admitted service members for inpatient treatment of mental health issues, dependents automatically got referred out. I was breastfeeding my baby and didn’t want to have to stop, so we tried going the medication-free route first with talk therapy, both individual and group. We quickly realized that it wasn’t making enough of a difference, so on to medication it was.

During this time, one of the biggest questions asked of me was “Do you have thoughts of harming or killing yourself or others?”. I answered yes. Partly because I had found myself on the brink of attempting to commit suicide, but also partly because of the thoughts I had been experiencing. I later found out that the thoughts and images that shoved their way uninvited into my mind were Intrusive Thoughts, one of the classic and tell-tale symptoms of Postpartum Obsessive-Compulsive Disorder. I didn’t know, at the time, that there was a difference between suicidal/homicidal ideations and intrusive thoughts, or that there was a whole spectrum of Postpartum Mod and Anxiety Disorders, I thought it was just all part of Postpartum Depression. Unfortunately, it seems that none of the staff caring for me at either of the hospitals knew this either, and I was diagnosed as simply Postpartum Depression. This is one of the things that I eventually hope to see changed: to see better education for medical professionals making them aware of the differences between types of symptoms and the various PPMD.

It only took a few days after starting medication (Lexapro) before I started to feel better. Before starting medication, my mom and my husband had come to visit me at the hospital and when my daughter started to cry, it was a noticeable trigger. My mom and husband had to keep the baby up front and switch off who had her and who was visiting with me. After starting meds, I was able to cope better when she started to fuss, I started to open up a little in therapy instead of sitting huddled up in the corner unable to speak without crying. After a little over a week in the hospital, I was sent home with prescriptions for Lexapro to manage my symptoms on a daily basis, Ativan for sudden anxiety attacks, and Ambien to help me sleep at night. I was also given an appointment to see a psychiatrist outside of the hospital.

When I went to my first appointment it was a total disaster. I ended up having to reschedule after I had been there for a couple of hours and still not been seen, because I had to get home since my babysitter had to leave. They weren’t able to reschedule me for another month or so out. I ended up back in the hospital a month after being discharged due to a recurrence of my symptoms (again, the intrusive thoughts that I didn’t know much about and didn’t know how to manage), and had my medication dosage adjusted. Thankfully, I only had to stay for about a week again and was able to go back home.

To be continued tomorrow…

Share Button

The emotional aftermath of pregnancy loss

Share Button

Trigger Warning: pregnancy loss, D&C

If you are feeling particularly vulnerable/sensitive, you may want to skip this post or may need to stop reading part way through. If that’s the case, here’s a video of pandas playing on a slide. Actually, even if that’s not the case you may still want to watch the video because it’s just that darned cute.

Over the last year, one of the things I’ve been doing is going through the process of becoming a Gestational Surrogate. In January of this year, we did an IVF transfer of 2 frozen embryos. Both stuck and I was pregnant with twins. Unfortunately, at 11w2d pregnant, an ultrasound showed that both babies had passed a couple of weeks prior. At the end of an agonizing and emotionally tortuous week, I ended up with a D&C. I won’t drag you through the whole story (you can read it here if you’re interested, at my surrogacy blog) but today I want to focus on some of the emotional aftermath of pregnancy loss and the risk of PPMD.

When I gave birth to my 2nd and 3rd children, I knew to expect some up and down, some hormonal changes. I know about the up’s and down’s and what to watch out for that might signal that I was dealing with PPMD and not “just” the baby blues. For some reason, it didn’t occur to me that I might go through the exact same process after miscarrying, but with added twists and turns to the roller coaster given the grief I was dealing with at the same time. It took my mom telling me “Yes, you need to be on the lookout for PPD, but keep in mind that your hormones are going through the same type of adjustments that they would with a normal postpartum period”.

It hadn’t even occurred to me that a pregnancy ending means my hormone levels fluctuating, regardless of how/why the pregnancy ended. Once I realized that it was normal and natural (for my situation), it was a bit of a relief and helped me feel a little less antsy. I was able to take some of that energy I had been directing towards “OMG I feel *whatever* is this PPMD?” and direct it towards processing my grief. It was a grief I wasn’t prepared for, because even though I went into the surrogacy knowing “Anything could happen”, I’ve never had a miscarriage before and especially once I got to that 8w5d u/s with two healthy babies and heartbeats, I felt like I was “safe”. That feeling of safety was an illusion; I realized that in about .025 seconds, but it still made it that much harder to accept the miscarriage.

I was fortunate, in that I didn’t suffer from PPMD after the miscarriage. But for too many women, that’s not the case. It has been more difficult than I can put into words to deal with the grief from the miscarriage; I can’t imagine if that had been compounded by PPMD setting in to rub salt in an open wound. In 2012, Psychology Today posted an article titled “Pregnancy Loss and Depression: Understanding the trauma of fetal loss” by Karen Kleiman, MSW, LCSW. In this article, Karen says

A study from the Journal of the American Medical Association (JAMA, 1997) concluded that major depressive disorders are more common in women who suffer a miscarriage than in those who have not been pregnant. Furthermore, they suggest that women who suffer miscarriages should be monitored in the first weeks after reproductive loss, particularly those who are childless or who have history of major depressive disorder. Among miscarrying women with a history of prior major depression, half experience a recurrence. It is also interesting to note that this risk did not vary significantly by maternal age, by time of gestation, or attitude toward pregnancy.”.

This is information that all medical professionals need to be very aware of and disseminate appropriately to their patients dealing with pregnancy loss, as does everyone with a loved one dealing with loss in pregnancy.

One of the frustrating things about watching for PPMD after my miscarriage was the difficulty in distinguishing symptoms. Symptoms that I know to often be associated with PPMD were also easily attributed to my grief. Anger, feeling down, lack of appetite and interest, just wanting to sit around, crying a lot, mood swings, and more had me thinking “Is this PPMD or is it just because I’m coping with a miscarriage?”. Thankfully, before too long, everything eased up and there was no PPMD for me. I was lucky and I am grateful for that.

If you have been through a pregnancy loss, you have my deepest and most sincere sympathies. I am so sorry for what you are going through and if you need someone to talk to about it, I am here and I am more than happy to talk in the comments, on twitter, on Facebook, by email, whatever. Also please know that you are not alone. There are people who understand what you’re going through and who want to support you. There are resources out there for you. There are two websites that I personally found helpful in processing the miscarriage: The Amethyst Network and Unspoken Grief. Postpartum Progress has a couple of posts that also helped me (links here, here, and here). And last but certainly not least, let yourself grieve. Give yourself permission to grieve. No matter how early or late the loss, it is a loss. Whether it was an early miscarriage days after you got a positive pregnancy test, a stillbirth at 40 weeks, or anything else (I am definitely not setting limits, the possibilities are unfortunately broad), give yourself the time and space and permission that that you need to deal with your loss in whatever way you need to. Remember that there’s no timeline on grief and no one right way to grieve. Don’t worry about offending other people, just do what you need to do to take care of yourself. We are here for you. I am here for you.

Share Button

What if you’re not better?

Share Button

Last week was a big week here at Postpartum Progress. It was the site’s 10th anniversary, and therefore the 10th anniversary of Katherine’s start as a powerful advocate for women with postpartum depression and similar mood disorders. In celebrating that anniversary, you may have seen stories from a whole list of women who credit Katherine and her work with saving their lives and getting them to where they are today.

But what if you’re not better? What if you’re still fighting PPD?

Being exposed to a slew of stories from people who did recover and who are better while you’re not can leave you with questions of, “Why me?” Or, “Why not me? Why are they better when I’m not?”

You may feel as though you have done everything you’re supposed to and it hasn’t worked. You might wonder why it’s seemingly easy for some people but not for you. And you might look at all that celebrating and feel like giving up.

What I want you to know is this: You will get better.

What I can’t tell you is when that will happen or what will work or how you will know you’re past the worst of it.

All of us who have struggled and who can now say things like, “You saved my life” walked a long road to get there. We had good days and bad days and a glimmer of light before the darkness enveloped us again. We tried things that didn’t work and then found some that did. For some it may have been relatively easy, while others fought hard and long.

winding path through trees

None of that may be reassuring for you, I know. You might be tired of fighting. You might feel bitter that life has tossed you something that requires so much work and energy and effort to get past. Or you might just not be able to see your own glimmer of light.

You don’t have to just trust that it will eventually be okay. I guess what I want you to know is that it’s okay if you look at the happy stories and want to throw something against your screen. It’s okay to be angry that your story is not among them, at least not yet.

So keep going, dear Warrior Mom. Keep fighting. Ask those of us on the other side for help, and we’ll be waiting here with open arms when you get here and are ready to share your own success story.

Share Button

A Whole Lotta Warrior Moms Say Thank You, Katherine, for 10 AMAZING Years

Share Button

Katherine ComputerI dove headfirst into blogging about Perinatal Mood & Anxiety Disorders because of Karen Kleiman.

But I grew into an online advocate because of Katherine Stone. She embraced me as I fumbled through the early days of running a blog, a website for struggling women, and my third pregnancy after two terrifying episodes of Postpartum OCD (which, incidentally, is what Katherine also struggled with during her experience with a PMAD).

If I had a question about something online, I turned to Katherine. She always got back to me and sometimes prodded me to do more and be more involved. More importantly, she always treated me as if I were equal to her, this amazing woman who had no fear about discussing the nitty gritty about PMAD’s online.

Postpartum Support International dragged me onto FB but where I flourished was on Twitter. I noticed, back in the early days of Twitter, that people were having these “parties” for certain products. I thought to myself, why can’t we do that for PPD? I floated the idea by Katherine and a couple other bloggers (Amber and Ivy). They were absolutely on board and Katherine whole-heartedly supported the beginning of #PPDChat.

#PPDChat is now the go-to hashtag for PMAD support on FB. There’s a closed FB group with over 350 members. I may have started it, but it wouldn’t exist if it weren’t for the experience, support, and genuine caring flowing from Katherine in my early online days.

She inspires more than simple advocacy (although few of us would dare call it simple – it is EXHAUSTING but worthy), she saves lives, she kicks stigma in the ass repeatedly, and genuinely cares about the people who reach out to her.

I don’t think she has any idea how many lives she has changed. How many advocates now exist because of her decision to live her life out loud. To stand up, shouting until she is heard, when the world expects us to sit down and be quiet. The passion in her heart far exceeds capacity and overflows abundantly to those around her.

To her family, a sincere and heartfelt thank you as well for sharing the woman of your lives with us. For without your support, all of us would not be the women we are today. I would be remiss to not acknowledge your important role in Katherine’s work.

Be proud – your wife, your mother, your daughter – she saves lives.

Below are several blog posts, written by women who celebrate how Katherine has affected their lives. To read them, you will need a box of Kleenex. These are women from all walks of life, women who found themselves covered in the dark mud of a PMAD but were yanked out of it by Katherine or found Katherine after they found their way out and now reach down behind them along with Katherine to rescue others who find themselves trapped in the mud hole of a Perinatal Mood & Anxiety Disorder. (Because let’s face it, no one wants to go muddin’ in a PMAD!)

Katherine, you’re changing the world with every breath you take, every stroke of the keyboard, every post, every outreach, every encounter, every awkward step outside of your comfort zone. You are loved, your work has wrapped the world over and made it a brighter place. We are always climbing out of the darkness with you and we will never stop.

Keep on keepin’ on, lady.

You’re not alone, and neither are we.

 

PP Blogathon Button

Jenny @ Tranquilamama: My Lifeline Through PPD & PPA

Robin @ Farewell Stranger: Postpartum Progress: 10 Years of Magic

Jennifer @ Bipolar Mom Life: The Relief In Finding Postpartum Progress

Danielle @ Velveteen Mama: My Postpartum Progress

Charity @ Giggles & Grimaces: Hope In A Computer

Jenny @ Jenny Kavensky’s Blog: It Takes a Village

Erin @ Erin Margolin: Happy Tenth Anniversary, Postpartum Progress

Morra Aarons-Mele @ Women & Work: In Celebration of Katherine Stone and 10 years of Postpartum Progress

Tina Duepner @ The Duepners: Cheers to 10 Years

Esther @ Journey Through PPD: Happy 10th Anniversary To Postpartum Progress

Ravion Lee @ Vain Mommy: Postpartum Progress Turns 10: The Woman Behind The Change

Kristina @ Sew Curly: Postpartum Progress Is 10

Rita Arens @ Surrender Dorothy: In Celebration of Katherine Stone

Katie Sluiter @ Sluiter Nation: I Am Not Alone and Neither are You

Cristi Comes @ Motherhood Unadorned: Postpartum Progress: Kicking Ass for 10 Years!

Tabatha @ Tabulous: A Love Letter To The Woman Who Saved My Life

Susan @ Learned Happiness: First and Last: Happy Anniversary, Postpartum Progress!

Deborah Forhan Rimmler via My Postpartum Voice: Guest Post – On Meeting An Angel

Beth @ Beth Bone: Thank You Just Doesn’t Seem Enough

Andrea @ Good Girl Gone Redneck: Happy 10th Anniversary, Postpartum Progress

Julia Roberts (not THAT one, the other one!) via Postpartum Progress: The Man Behind the Woman Behind Postpartum Progress

Jess @ Just Jess In the ATX (note – this was not written for the anniversary specifically but was shared to the FB page for the blogathon to show the impact Katherine had on Jess’ life and recovery, therefore, it’s shared here): Picture Perfect 

Share Button

The Man Behind the Woman Behind Postpartum Progress

Share Button

contributed by Julia Roberts– Agency Owner, Speaker, Advocate, Mother of two kids with ARPKD/CHF, both kidney transplanted, Co-founder of Support for Special Needs

FCpost3I do not know Frank Callis, Katherine Stone’s husband, personally. Like many other people, I’ve seen pictures, read posts about him from Katherine, and seen loving status updates to him and from him. Even though I’ve never met him, I do know what it takes to support your partner when they stumble across a mission to help others.

Full disclosure, I have not suffered from a postpartum disorder. Like Katherine though, I stumbled across a voluntary position in the realm of the non-profit world supporting others and I could not do it without my husband, Julian.

To understand I know this for certain, you’d have to know that nearly 13 years ago my daughter was diagnosed at birth with a rare form of a common life-threatening kidney disease (ARPKD) and three months later her then 3-year-old brother was diagnosed as well. We knew we’d soon face kidney and liver failure in our kids and overnight we went from a family welcoming their second child to a family raising two kids with extreme special needs. Just. Like. That.

We didn’t have anyone to talk to and on the Internet we found only staggering odds against the kids to live “normal” productive, healthy lives. I contacted the PKD Foundation, started a chapter in Atlanta, met people facing what we were and I carved out a way for parents of kids with PKD to connect. It has helped a lot of people and I’m pretty proud of that, but if I’m honest, I did it because I needed to connect.

To do this the past 13 years, my family has had to make sacrifices and my husband specifically has had to adjust how we live as a couple and a family.

In order for Katherine to do what she does Frank has to be patient and kind and loving, that is a given. In practicality he has to do more. Katherine doesn’t get a paycheck from her work at Postpartum Progress and in order to do what she does well, she can’t earn a regular check from a 9-5 corporate job. Katherine was successful at and is still extremely qualified for a corporate gig, so there goes a steady salary the family can depend on. Katherine has thanked Frank on more than one occasion for being supportive of her choice to work for zero profit in the non-profit world, to save lives. I and countless others want to thank Frank, too, for everything he does to support the woman we know as Katherine, an original Warrior Mom.

What does that look like day-to-day behind the scenes? It probably means that over the last 10 years Frank has endured listening to dozens of calls at all hours when Katherine spoke to someone who needed immediate support. It has probably meant he held her as she cried because she takes in story after story and remembers her own pain. It has meant watching her relive their story and heal over time as she has helped others heal. It means that Frank has been open to people knowing their personal story and intimate details about their lives in the name of helping other people not feel alone in the often isolating world of postpartum disorders.

FCpost1I am sure on several occasions Frank has gathered up the kids and all that means, while waiting patiently for Katherine to get one more email of support out to a woman struggling, or while she tried to find the link to an old post to share, finished work on a Daily Hope blast of support to women who have come to depend on that reliable contact. I bet he’s had to change plans, arrive later than expected, juggle work responsibilities to support Katherine in a quest to empower women and families in ways we cannot even imagine.

I know it’s meant Frank telling their story of those early days in their family journey  – on the record  - to help others.

Proof:

http://stories.sharewik.com/videos/2086284

FCpost2Thanks Frank. On this 10 Year Diamond Anniversary of Postpartum Progress we celebrate you, too. Thank you for all you have done over the years to support Katherine graciously and lovingly. Thanks for all of the time you devote to making sure Katherine is realizing this mission that came out of creating your family. Your love and continued reinforcement allows her to impact lives in immeasurable, positive ways…which means YOU impact countless lives in immeasurable ways too, and we’re grateful. We know she couldn’t do it without you and your unwavering support and love.

Thanks, Frank, for being the original Warrior Dad and Husband.

Share Button