Wednesday, March 20, 2013

A few thoughts on HG, years later.

A few years ago I wrote this about my experience with Hyperemesis gravidarum, or HG. It's hard to believe that that part of my life happened 6 years ago. It some ways it feels like it was yesterday. Probably because it always stays with you, both emotionally and physically.

Every couple of months I check helpher.org and read the message boards. It's not something I let myself do all the time because it makes life so heavy. I was very excited though, to see the announcement for the HER 5K at the National Harbor on Mother's Day. You see events like this for other diseases all the time, but this one is for HG! Finally! Something to help MY cause! That thing that almost killed ME! I'm already bracing myself for the emotional impact of that day, though. For most of us, it will be the first time any of us will have ever met anyone else who suffered it. It will be a big deal, for all of us.

As the event approaches, I've been reading a lot of HG blog posts. It's hard. It's hard to relate so closely to another person's suffering. It's also hard not to be angry. SO angry. I read stories of PICC lines, Zofran pumps, hospitalizations, and feeding tubes, and wonder, "Where were mine?" At the time I thought I had been taken care of with the best the medical community had to offer at the time. In retrospect, this was clearly not the case. I was given the maximum dose of Zofran and told to go to the ER for IV's occasionally. I was told to hang in there, that it should get better next week. That PICC lines were extreme and that they wanted to "wait and see." I was 93 pounds, hadn't eaten anything of nutritional value in months, was too weak to walk on my own, and sporting that lovely green-ish gray color that comes along with such extended suffering. Wait and see? For what? Death? Because that's really the next logical step on that path. I have no medical training, but it doesn't seem to me like a big leap to see a woman, a pregnant woman no less, in such misery for weeks on end, dehydrated and malnourished, and at least hook her up with a PICC line and start pumping some saline in there. Is it? I realize this is somewhat graphic, but you know how when you have the flu and there's that incredibly intense nausea just before vomiting? That feeling, with that intensity, is what women with HG feel every single moment of every day. It never goes away, despite the fact that you're vomiting somewhere between 10 and 30 times a day. Now imagine that every day of a pregnancy. Saline IV's help tremendously. A PICC line for a woman with severe HG seems like it should be standard practice, but I guess that's just me.

Sigh.

I'm also angry for all of the other women out there who are left to suffer this. Sadly, my story is not unique in the HG community. If anything makes it stand out a little, it's the outcome. Here in the US, we think of women dying during pregnancy or childbirth as a third world problem, but it happens here too. This is absolutely mind-blowing to me. Treatment for HG certainly doesn't cure it, or even make life and pregnancy the joyous time that it should be. But it can save lives and make it a little bit easier to hang on.

My pregnancy with HG truly was the darkest time in my life. I honestly just wanted to die. I begged and pleaded with God to just let me go. End it already. I knew that my friends and family would be upset, but when you're in that state, that's simply not enough. The only thing that kept me hanging on by a thread was knowing that my husband and baby needed me. That was it. If it hadn't been for my husband's unending love and support, I really don't know if I would have made it.

I did, though. My survival meant a better chance for my daughter's survival. Unlike a healthy pregnancy where the risk of miscarriage decreases after the first trimester, the risk of losing the baby continues to rise throughout an HG pregnancy due to severe malnutrition. Yet somehow, we're here. We're both here. I'll never consider it anything less than a miracle that my daughter survived that environment and is this healthy, sweet, smart, beautiful little girl. I don't know how that happened or how I got so lucky.

It took a long time, but overall I'm now the healthiest I've ever been. Or at least the fittest I've ever been. Hyperemesis definitely took its toll on me. My heart, liver, and teeth all sustained damage and will never be the same. They all like to remind me of that occasionally. There is one positive thing that HG has given me though, and that's a sense of perspective. As many of us do, I struggle with self-doubt A LOT. Sometimes I need to remind myself, "I spent every moment of 8 1/2 months of my life staring death in the face.....and ultimately told it to F*CK OFF. What was that again that I thought I couldn't do? That thing over there? Psh. I've got this."




Sunday, June 17, 2012

Happy Father's Day!

Seeing the bond that Eva has with her father brings me an indescribable amount of joy. I know that on some level, she already knows how lucky she is to have such a committed, involved father. Happy Father's Day to my wonderful husband. There's no one else I'd rather be with on this crazy journey called "Parenthood."

 She ran him all over the playground, loving every second of it.


Teaching her how to skip rocks on the creek.



Friday, June 8, 2012

I am not a princess. ....Or am I?

Disney. Oh, Disney. For months before our vacation, everyone who found out about it and had been there themselves expressed their excitement for us. We were going to have the best time, it was going to be the best trip ever, so much fun, yadda, yadda, yadda. I was expecting that it would be pretty great, but the overwhelming enthusiasm seemed almost....cult-ish. I kid, but everyone was super excited.

And now I understand. I might have also become one of those people myself. It was absolutely amazing and I don't think we could have planned a better trip. We went in October, which for us, is definitely the time to go. The crowds aren't bad and the weather was perfect. We stayed at the Grand Floridian, which was also perfect for us. Being one stop from The Magic Kingdom on the monorail was nice.

Also nice? Being able to eat at restaurants with full confidence that both the server and the chef understood my food allergies and took them seriously. For those who aren't food allergic and who don't regularly dine with those who are, let me tell you that that is a BIG deal. HUGE, even. It is not uncommon for servers to react to my questions with blank stares and it happens all the time that restaurants can't accommodate me. At each meal, the chef came out and spoke to me, and at each character breakfast, he took me on a tour of the buffet and showed me what exactly was safe for me to eat. At one of our breakfasts, we had this exchange, "Is there anything special that we can make for you?" "Oh, no. There's plenty here that's safe for me to eat. I'm good." "Oh, you're easy." "I try to be." "This is Disney, you don't have to be easy." I could have kissed him, but I'm not that kind of easy. Meal planning is by far the most stressful part of the equation when I travel and being hypoglycemic adds an extra degree of difficulty to the situation. Disney took nearly all of the food-related stress away from me. Note to every other resort on the planet: This is the standard by which you will now be judged. Good luck.

Disney had another surprise in store for me. As you might have figured out by now, I've never been too keen on the notion of idolizing princesses. Who would've guessed, right? I've spent much of my life feeling the need to prove my worth as a girl. I always felt like I didn't quite measure up because I was a girl and that I should be constantly finding ways to make up for it. You know what's awesome when you're at Disney? Being a girl. They celebrate girls there and I might have loved every single second of the extra attention that Eva got because of it. This may have had a lasting impact on me.

So what did the kiddo think of the place? She LOVED it, of course. I think 4 was the perfect first age to take her there. She's pretty skittish around men and only mildly tolerates Santa Claus because of that whole benefactor of gifts deal, but put someone in a giant animal mascot-like suit and it's a game changer. She practically tackled several of them. I'm pretty sure that meeting Minnie, Mickey, and the Princesses were the highlights of her life to that point. She loved the rides too. I was surprised when she wanted to go on the rather terrifying Snow White ride a second time. "Mommy, it's just pretend." Apparently the kid's got a pretty good grip on reality.

We spent most of our time at Magic Kingdom plus a day each at Epcot, Hollywood Studios, and Animal Kingdom. I loved Epcot so very, very much. (I am a science dork at heart, after all.) I could easily spend an entire week there. Hollywood Studios was pretty neat too. I think Eva will enjoy it a lot more once she gets a little older. The only place that we weren't enamored with was Animal Kingdom. It just didn't seem as happy as the other parks. But oh, the time I could spend at the other three.....

I'll let the pictures take it from here....

 Patiently waiting for her first airplane ride. She thought it was the funnest ride ever and had no idea that Mommy was internally freaking out the entire time. 


 Of course I was wearing my jersey. It was game day.


 Someone was a big fan of the tea cups.


It was like he just knew. (My first cat's name was "Tigger." I'm kind of a fan.)


The more composed version.


 She wasn't really sure who this was. No worries, this oversight has been corrected.


 The whole reason we went to this particular character breakfast. Her favorite Disney character after Minnie.


 I'm not sure that she really had any idea who these guys were, as sadly the Rescue Rangers were before her time, but she practically took a running start before tackling them. ("Chi-chi-chi-Chip and Dale, Rescue Rangers.....")


 It's amazing how these cast members never break character. Also, she really does talk with the same voice as the character in the movie.


 "But Mommy, how can Ariel walk?!" 


 Ready for the Princess Tea Party. I may have gone overboard with the planning.....just a smidge.


 Patiently waiting for them to get the show on the road. Sort of.


 Having a very serious conversation with Princess Aurora.


 "I have no idea who this broad is, but she's no princess that I've ever seen." No, she didn't actually say that, but I think her expression makes it pretty clear. She was "Princess Rosebud"....or something.


 Did I mention her love for the tea cups?


 One thing about Disney is that parades and fireworks elsewhere will forever pale in comparison. They're incredible and like nothing that you'll see anywhere else. Another perk of our room at the resort- we could see the fireworks at the Magic Kingdom from our balcony every night. Pretty nice when you have a small child that needs to get to bed sooner rather than later.


 Meeting Minnie and Mickey for the 1st time. 


 One of the greatest ironies of my life thus far was, after writing on this blog for a few years, getting here and realizing the many parallels between myself and the chick here in blue. Maybe one day I'll write about it, but I'm not sure I'm ready for that one yet. (This would probably be a good time to clarify that, while I have two sisters, neither of them is evil.)


 Belle!


 Her favorite princess, Princess Aurora.


 Daisy.


 Big hugs for Mickey.


Despite her love for the princesses, Minnie still has her heart.

So that was our trip. Eva still asks at least once a week when we'll be going back. I'd love to have an answer for her, but it's not the kind of trip we can make happen any old time. I'm sure we'll be back, though and I'm sure she'll go running back to Minnie and Mickey with open arms once again.

*tap tap tap* Is this thing on?

So yeah, it's been a while. I've missed writing here and connecting with all of you. Life was just a little too crazy for a while and something had to give. Life is still crazy, but in a good way now.

Unfortunately, such busyness and no writing meant that a lot of things went undocumented and I wish that hadn't been the case. I'm feeling more than a little guilty about that since I know that there are a lot of details that I've forgotten already. I mean, I'm lucky if I remember what I had for lunch yesterday.

We went to Disney last fall, Eva started swimming and "real" ballet lessons, I (finally) got my personal training certification and went off to Les Mills Body Flow training, and then Eva graduated from preschool and turned 5. Oh, and then there was that thing where we spent 3 months with our house turned upside down while it was being renovated.

The little hamsters in my head are getting back in their wheels. I'll be back soon with updates and regular posts. I've missed you guys!




Monday, November 21, 2011

Our Secondhand Lions

While at Eva's dance classes, I have learned the hard way to sit and listen to my iPod while reviewing flashcards for my upcoming (some day....) certification exam. Or at least I pretend to be studying. Either way this excludes me from the painful "mom" conversations going on around me and drowns them out. This has become a critical coping mechanism in my Monday mornings.

I'm not entirely sure where I stand on the whole concept of ghosts, but I like to keep an open mind. It could have all been coincidence and me just looking for something. Either way, in the span of 30 minutes, this happened:

1. I looked up at just the right moment to see a Schmidt's bread truck drive by. (My grandfather drove one for a living.)

2. I pulled a random flashcard about aortic insufficiency. (My grandmother had to have her aortic valve replaced. It was just over a year ago, about 10 months before her death.)

3. WQED tweeted about a special airing tonight about the TB Sanatorium in Cresson, where my grandmother once worked. She lived in Cresson (a teeny tiny town on top of a mountain) for more than 60 years. I'm pretty sure that in the couple of years I've been on Twitter, that I've never seen anyone tweet about it before.

This might have led to me looking like the slightly unstable mom who randomly starts crying for no reason. Oh well. If they think I'm crazy, they'll leave me alone, right?

Of course, this led to me texting my sister.

Her: That's a lot. What does it mean?
Me: Kinda feels like Mee-maw and Gramps are hanging out in LoCo today....
Her: Hanging out? That doesn't seem right. I'd go with "popping wheelies up & down Algonkian."
Me: LOVE. IT.
Her: Ending in a foot race of epic magnitude.
Her: I can see Mee-maw driving the bread truck, letting Gramps swing off the sides and the back. Both wearing aviator gear.
Me: I can only see that happening if Gramps agreed to take turns. We're talking about a woman who used the roof of her orphanage as a slide.
Her: Exactly. I honestly see them like "secondhand lions."
Me: I'm also guessing that Grandpa Paul is somewhere nearby, shaking his head at them.
Her: Sneaking out. Playing the drums.
Me: Writing a little blog post. This convo is going in it.
Her: Haha. That's just what they'd want.

Where ever you are, what ever it means, we miss you!

On a side note, I really need to start doing more crazy things if my legacy is ever going to hold up to that of my grandparents. I think my future grandchildren need some good stories to tell about me. The odds are pretty good that at least one will start with, "This one time at a hockey game...."

Thursday, November 10, 2011

My 2 Cents....

I've been thinking about writing this post for days now, but taking all of the words in my head and making them into coherent thoughts has been a challenge. The scandal at Penn State has brought on shock, anger, sorrow, more anger, and more sorrow as the week has gone on. Everyone has strong opinions, and I feel the need to share the basis for mine.

I grew up in a Penn State family. My dad, uncle, and aunt all went there. I grew up watching football with my dad in an effort to bond with him. The first football game that I have a clear memory of was the 1986 National Championship game versus Miami. I'll never forget my dad very nearly flipping the leather recliner he was in when they won. I'll also never forget responding to rumors of Joe Paterno's impending retirement after that season by getting out my Penn State stationary and writing a letter to beg him to keep coaching.

From elementary school until I graduated from high school, my life was consumed by the desire to go to Penn State. It was my drive for everything that I did. I lived and breathed it. I was going to Penn State. 

Then in the span of a year, 2 things happened that shook my world up. The least of those two things was the Penn State rug being pulled out from under my feet when I was informed that my parents wouldn't cosign on the student loans that I needed to be able to go to school there. I was stunned and devastated, but in comparison, it wasn't that big a deal. Life would go on.

The more significant event was an assault by an adult male coworker during the summer between my junior and senior years of high school. Physically, the altercation left me with scrapes on my legs, his hand prints around my arms (that didn't fade for a month), and bruises from being picked up and thrown into a set of metal bleachers. Twice.

I told my parents. I'll never forget hearing them tell me that if he ever came after me again, that then they'd go to the police. And that was it. That was all. The message I got was "You're just not worth the fuss." I didn't swim my senior year because every time I was at the pool where the assault took place, I had flashbacks. I used the excuse that my knees hurt, but all things being equal, there's no way that would have stopped me. The flashbacks were another story. I don't really remember much else around the time that the flashbacks started, although friends have filled in a few of the blanks. Apparently I didn't speak for a month and there were pills of some sort involved. It's all a blur now. There were two panic attacks that I remember vividly, triggered when I thought I saw my assailant on different occasions. I couldn't move, I couldn't think, I couldn't breathe. I was terrified that he might be anywhere near me again. 

And for years, that's what I thought life was after such an event. Eventually I went to therapy and muddled my way past the assault. I consider kicking PTSD to the curb as a major accomplishment. The part of this that remains, however, is the constant struggle to find self-worth. If I wasn't worth it to my parents to stand up for me, then what was I worth? Anything? Why would anyone ever truly take an interest in me? Love me? Want to be my friend? If people are talking to me, they're just being polite, right? Why would anyone really care? That, my friends, is the part that stays with you every single day. The feeling of worthlessness.

I know the profound impact that this had on my life, and it doesn't even hold a candle to what happened to all those kids in Pennsylvania, or the abuses that so many others have faced. My experience doesn't even come close that. It breaks my heart that those kids were sent the message that they weren't worth the fallout that such charges would bring. That's the message they've been carrying around, that they were so worthless that a monster could abuse them in unspeakable ways and that a football program and legacy were more important than protecting them or finding them justice. 

Don't get me wrong, my anger isn't reserved solely for Joe Paterno. At this point we don't know what he was actually told. But we do know that he knew something and did the least that he was required to do legally, and never followed up. If something horrible ever happened to my daughter, and years later someone told me that they knew and should have done more, I would be beyond livid. But like I said, he doesn't deserve all of my rage or anyone else's. There's the sick man that perpetrated the abuse to begin with and is so arrogant to be maintaining his innocence. Sure, he's legally entitled to such claims for now, but anyone who has read that grand jury report knows better. McQueary also gets a significant allocation of my rage. It's clear that there were many people along the way who knew about this and preferred to sweep it under the rug, and my anger extends to every single one of them.

I have so much respect for the victims that have come forward and have kept making noise about it until someone heard them out. It takes courage that I never had. They faced fear and humiliation that no person should ever know. Their bravery in coming forward with their stories is remarkable.

A lot of people have commented lately that others shouldn't let emotions factor into their reaction to the scandal. I don't understand how any parent could read that grand jury report and not have such a reaction. There is no grey area when it comes to reporting child abuse. It was said to me that "Well, we all do our best." If that's our best, then we need to seriously check our collective moral compass. Those kids deserved better, all of them do. I hope that all of his victims can find closure and peace, sooner rather than later.


Friday, July 15, 2011

For This I Am Grateful

I am so very grateful for all of the support that I've gotten over the past week since my grandmother passed away. Whether your condolences were expressed in person or online, every hug, word of encouragement, listening ear, text, tweet, Facebook message, comment, email, card, and flower has made an impact. My grandmother meant a great deal to me and I always knew that when this day came that it would be one of the toughest things I'd ever have to deal with. I wondered how on Earth I'd get through it. As it turns out, support from my friends and family has taken some of the sting out of it. Thank you.

I would also like to express my gratitude to the Cresson, PA American Legion, VFW, and Knights of Columbus for giving my grandmother, a World War II veteran, the dignified and honorable sendoff that she deserved. Seeing each of them salute her before the funeral was very moving, and the playing of "Taps" at the graveside service finished me off emotionally. There was also a 5 gun salute. It highlighted one of the many reasons that I was proud to be her granddaughter.

My grandparents' engagement photo.

My grandmother at 23.

My grandmother led an amazing life. She was an orphan, a tennis player, a model, and a member of the Women's Army Corps. She wasn't the hugs-and-kisses-and-making-cookies kind of grandma. She was a "Let me tell you about why I didn't like John Wayne (personally) and what it was like hanging out at Bing Crosby's mansion." kind of grandma. She felt it was important to help the less fortunate and did so in whatever way she could. She and my grandfather took people in as members of the family who didn't have anyone else.  She was fearless, even in having her aortic valve replaced last year. She faced every major heartbreak you could think of in life and handled it with grace. What a legacy.