Review: In My Hands

I wasn’t sure how I would like In My Hands. The segments I posted earlier looked promising, but I’d seen the rough cut of the documentary at the Boston NMF conference and hated it. I felt like the movie had no direction and was too negative, and I walked out of the viewing halfway through.

I am extremely pleased with the final version. It is the exact opposite of what I saw in the rough cut: cohesive and uplifting.

There are a couple nitpicky issues I have though. First, the word “disease” is used frequently throughout the documentary, but Marfan is not a disease: it’s a disorder, a syndrome. I realize disorder and disease tend to be used interchangeably, but there is a slight difference and I’m rather pedantic on this issue.

Also, I felt like a lot of emphasis was put on the aortic root and monitoring that, but not much on the rest of the aorta. I don’t think Ben’s cardiologist even mentioned the rest of the aorta. Although aneurysms tend to develop in the root first, they can actually happen anywhere in the aorta at any time. It’s vital that people with Marfan have yearly echoes of the ENTIRE aorta.

So other than those small things, I loved this documentary!

If you have Marfan syndrome, if someone you love has Marfan syndrome, or if you are curious about Marfan syndrome and want to learn more, WATCH THIS! In My Hands is able to address all three groups in a way that doesn’t interrupt the flow of the various storylines.

The curious: Dr. Hal Dietz of Johns Hopkins is once again a superstar as he explains the syndrome in easy-to-understand terminology. Various, one-sentence facts also play across the screen before relevant sections. The infusion of Katie, Kami, John, Chris, and Ben’s stories bring an understanding of Marfan that no article on marfan.org ever could.

The loved ones: This film will speak to “non-Marf” parents in particular. Ben’s parents and Katie and Kami’s mom don’t shy away from discussing some of the familial strains that come with having differently-abled children. I love the mother who talked about her initial fears of letting her son out of her sight, but that now she can say “go on, get outta here!” I know (at least on one level) how scary the diagnosis is, but there is so much that we, Marfs, can do. Parents: this documentary will show kids living WELL with Marfan. It will show them dancing, doing martial arts, swimming, climbing a ropes course, playing music, and more. There’s nothing more hopeful and beautiful than that.

The Marfs: So many times while watching this I would think “Exactly! They hit the nail on the head!” John described my thoughts on having a “Marf baby” perfectly. I could empathize with Katie and Kami because I was their age not so long ago and had the same feelings about myself. It can be easy to feel alone with this disorder, but this movie will remind you that you are not alone.

I advise screening this video as a family before showing it to friends and extended family members. Marfan is a life-threatening disorder, so the documentary is not all rainbows and sunshine, although it is ultimately extremely uplifting. I believe having a run through will help you anticipate questions that might come up, or “talking points” to discuss further with your audience.

In My Hands is masterful. It is moving. It may change you; I hope that it does. Bring tissues…lots of them. The last segment is breathtaking, and be sure to watch all the credits.

* Copies are available in limited supply through the National Marfan Foundation for eligible families. The order form can be found here and the cost is $25. If you have questions about your eligibility after reading the form, you can contact Jonathan Martin at jmartin@marfan.org.

** I was not paid for this review, nor was I asked to do this review by the NMF. I paid for my copy of the documentary myself.

MRI

Headed in for an MRI of my spine this afternoon. The pain specialist I saw a few weeks ago ordered it to see if the fibromyalgia is really just nerve damage due to spine changes from Marfan. Don’t get me started on the grief it took to get this scheduled, but for once it wasn’t the insurance company’s fault! Go figure!

Anyway, I just got off the phone with the scheduler and she said it will be sometime in JANUARY before I can get my next appointment, to even DISCUSS medication or physical therapy/acupuncture (which I’d prefer). My initial appointment was 4 weeks ago.

So…the pain clinic only lets you see them for 6 months, but the first HALF of that is spent waiting, which means I get maybe two visits after starting treatment to see the specialist. Seriously?!

I think I’m going to go cry in a hot shower now, then try to think up a Plan B.

How Mary Saved Me from Teenage Mortification

This week I’m answering the MamaKat’s prompt #5: Describe a moment you felt embarrassed by your parents

I think a more apt prompt would be “When WEREN’T you embarrassed by your parents?” My mother is not usually one to over-share or cause a scene (except when she passed my baby picture around my class in middle school, or took my girlfriends and me to see Spice World [I only saw it out of peer pressure, I tell you!] and screamed OH MY GOSH THOSE ARE NAKED BUTTS COVER YOUR EYES! during the “male dancers” part…). My father, on the other hand, was a bipolar artist. We lived in a small town and EVERYONE knew who he was, for better or for worse.

Now, in high school we lived in a house whose back could be seen well from the highway. Not built by us, it was an open-beam home and had been constructed with a crane dropping in the skeleton of the house, which caused attention in our town: enough that we got a lot of unsolicited feedback when we did some necessary remodeling.

Christmas was Dad’s favorite season of the year. He loved to decorate the house inside and out, sometimes in unconventional ways. The new house proved to be his perfect canvas, and our first Christmas there he decided on a blue theme.

I don’t have a problem with blue Christmas lights. I do have a problem with abstract designs done randomly all over the exterior of the house in those huge, no longer sold blue Christmas lights.  Frustrated with trying to detangle the lights, my dad literally threw the whole lot of them onto the side of the house and nailed the mess in place.

You can imagine the comments I heard around town.

The icing on the cake though occurred when I was being driven home from a babysitting gig by a neighbor. “Oh my GOODness!” she yelled as she slammed on the breaks. “YOU HAVE THE VIRGIN MARY ON THE SIDE OF YOUR HOUSE in Christmas lights! How did your father DO that?”

I looked at the mottled mess.

“Oh, you know, he’s really creative like that.”

Please don’t strike me down for that fib. I was an embarrassed teenager.

No, I Have No Idea How He Got That

The Business of Blogging

This evening I had the opportunity to participate in an interesting conversation about blogging and money, specifically getting paid for blogging, whether that’s via ads, giveaways, or particular posts. The discussion was fueled by the LA Times article, “Blogging moms wooed by food firms”. Major companies, most recently Nestle, are paying big bucks (and other perks like steaks, fancy hotels, etc.) to prominent “mommy bloggers” in exchange for favorable articles about their products.

But what is ethical?

This is so murky that the Federal Trade Commission (FTC) has even gotten involved, creating stringent yet vague rules for blogger disclosure, which go in effect Dec. 1st.

So tonight the Twitter conversation #blogmoney started off about ethics, but became more. We talked a lot about bloggers disclosing their business practices to each other. In American culture talking about how much we make is taboo, but should it be the same in the blogging “business?” This is something I’ve experienced first hand. Taking my blog public has been an interesting process, and I sometimes feel like I’m trying to beg my way into a secret sorority. How do increase readership? How could I go about convincing a company to sponsor a giveaway? As I’ve tried to ask these questions I haven’t heard a response. I assumed that there was a fear of competition, or maybe I was just being incredibly rude.

The interesting point made this evening was that maybe by NOT talking about these issues we’re actually shooting ourselves in the foot. Companies might balk at paying reasonable rates if they know other clueless bloggers will pay much less than their time, their writing, and their readership is worth. If veteran bloggers, one woman suggested, took new bloggers under their wing to discuss these issues, new bloggers might be able to get a better estimation of their worth. Some women got very upset that anyone would ask even how much they make from their blog, let alone tips of the trade. In my opinion, that misses the point. I don’t care who makes what, but it would be great to compile a general range of “going rates” for bloggers to draw from. When a few bloggers underestimate their worth, it affects everyone.

We also discussed the legal implications of the new FTC guidelines (and how little any of us understand them), how we operate our individual sites, how we got started writing, and which domains/servers we use. Ms. Single Mama created a poll about Mommy Blogger Earnings as well.

To summarize a tweet from Faten aka ConnectingWomen (because direct Twitter quotes often don’t make sense) “This conversation is a milestone because critical thinking has been awakened in all bloggers: newbies, middle, and veterans.” I would agree: tonight we were able to get a great conversation going, I met some really interesting women, and I hope these conversations will continue.

What do you think? Should talking about “blogging money” be done more? Is this another facet of the Feminist revolution? Is it ethical to take money for reviews or giveaways on your blog? Please leave a comment!

Tips ‘N’ Tricks: RG Maternity

Starting when I began to wear maternity clothes, I’ve been keeping a list of items and tricks that have been really helpful to me as a mother with a chronic health condition, although some of these are certainly applicable to all moms. From time to time I’ll write reviews on the items (tips) or offer up suggestions of ways I’ve adjusted doing things (tricks) to make being a mom easier on my body.

All of the products are ones I purchased myself, unless otherwise specified.

Having a 37” inseam and trying to find reasonably priced pants is not an easy task, but it’s particularly hard when you’re pregnant. I don’t know why, but most of the stores I usually shop only carry 34” maternity inseams, as if tall women don’t ever get pregnant. Go figure. So, I was very excited when I came across RG Maternity.

Being a family-owned store, the selection is small but changes every few months and the deals can’t be beat. I purchased a pair of dark bootcut jeans with a versatile panel, gray dress pants with a full panel, and a red rouched top. Having a disproportionately small upper torso, I welcomed the long shirt because it gave me the illusion of being more equally proportioned. I also personally prefer the full belly panel. I carried high and the versatile panel kept slipping later in my pregnancy, but the full panel fit smoothly and kept my pants up well.

RG’s customer service is excellent! When I emailed questions I got a response right away, and was emailed when new items became available. Shipping only takes 1-2 days. The only thing that complicates returns is that you must email the company for authorization for a return before mailing back the item, and you have two weeks to do it. I cut it reeeaaalllly close when trying to exchange my dress pants for a different size. I’m a wee bit of a procrastinator.

Overall, great small business and if I ever have another baby I’d use them again!

Below is a picture of me wearing the gray dress pants.

Flashback Friday

I’m trying out Flashback Friday via Texan Mama’s blog. Participants re-post an old blog entry. I’m re-posting “Stress Test: Dressed to Impress.”

 

 

Today I got to look like an alien. Or maybe an astronaut. I’m not really sure which, but either way you should be Totally Jealous!

A few weeks ago, my cardiologist told me I needed to get a stress test done, to see if it’s my heart that’s causing me to be short of breath, or if it’s my lungs, or if I’m just a complete crazy person (my choice of words, not his). “We’ll even do it on the brand new, high-tech machine!” he said. His excitement was palpable. [I started to type I'm not so nerdy that I get thrilled over a piece of medical equipment, but then I remembered how I'd gotten the same look in my eyes when our band director let me be the first to try out our high school's new vibraphone. Guilty as charged.]

Anyway, I don’t know if any of you have ever had a stress test, but I think it got its name from how much it stresses you out ahead of time to know you’re getting one. Seriously, in all the medical tests and procedures that I’ve had, this is the first one I remember signing a consent form for that read in Big Bold Font: YOU MIGHT HAVE A HEART ATTACK AND/OR DIE. Typing this out now it’s actually pretty funny, but this afternoon it was vagually unsettling.

First, I had a quick echocardiogram to get a baseline reading for how well my heart is functioning. Unlike my normal echos though, I had 13 stickers placed all over my chest and belly, upon which 13 leads were placed, which all went into a box that sat on a belt, which went around my waist (got all that?). Because I would need to rush back from the treadmill to the bed for a 2nd echo, I couldn’t wear my robe normally, so the tech tied it around me toga style. Then I got a fancy blood pressure cuff that had a speaker attached to it so that the tech could hear my heart beat. And after that came the “ET” oxygen sensor (you know, the one that goes around your finger and glows red like ET?). The crowning glory? The oxygen mask. Only problem is, I have a ridgeless nose, so none of the masks would fit me without creating leaks. This meant that instead of a mask, I had to have a series of hard plastic tubing in my mouth and a clothespin-like cover over my nose. The tubing was rather heavy, so it protruded from my bottom lip…making me look a bit like a chimpanzee. And did I mention I was so busy with Miles this morning and trying to get out the door that I forgot to brush my hair?

Ladies and Gents: I’m bringing sexy back.

Last to do before starting the test was for me to tell the tech the maximum amount of activity I could do without being winded. Their chart left something to be desired. I mean, is social dancing really easier than pushing a lawn mower? And is carrying a small child up a flight of stairs more difficult than lifting 60 pounds? Have I ever actually pushed a lawn mower?

Finally she started the treadmill. I ended up having to hold the oxygen contraption in my mouth with one hand and hold on to the handlebar of the treadmill in the other as I walked faster and faster. I’ll spare you the details of how it felt to keep going till it felt “very, very hard” (#17 on a scale of 20, in case you were wondering). When I couldn’t go anymore, I signaled to the tech to stop the treadmill, then stumbled back onto the bed for my 2nd echo. I finished out the round of exams with some quick pulmonary function tests and the promise that if I’m a good girl, maybe I can come back in a few weeks for more (dare I hope?!).

Piece of Cake

I think I was 9 that summer. My parents bought a fake hammock (you know, one of those that comes on a stand) for our front porch and I was content to spend hours on it reading. My 7-year-old brother was content to cause trouble, and on this particular day did so by tossing me out of the hammock and onto the concrete porch.

I was hurt, but not so hurt that I couldn’t run and wake my parents from their nap. “Matthew pushed me out of the haaaaaamock!” I cried. “You have to PUNISH him!” My father opened up one eye and surveyed my brother and me. “I’m going to need some time to think of a punishment to fit this crime, “ he said, then dismissed us to await his decision.

Really, this was genius. It bought my parents more time to sleep, it placated me, and my brother spent several hours squirming with mental anguish over what our dad was going to do to him. Eventually my parents got up, we did some chores and got ready to go to the pool. Still, no punishment. My brother was getting so panicked that Mom insisted Dad mete out the consequence.

At this point in the story you might think that the punishment was the worry over the punishment, but you’d be wrong. My father, an artist, was more creative than that. With my mother, baby sister, and I waiting by the van to leave, he instructed my brother to stand in the middle of the front lawn.

My grandfather lived nearby in an assisted-living community. Each week the local grocery store would drop off their too-old-to-be-sold baked goods for the seniors, and Grampa Pai would bring us a batch. Most of the food was totally inedible, and this week was no exception: Grampa had delivered us a stale, robin’s egg blue cake. It was this cake that my father took outside to my brother.

Before you could blink, Dad had smeared Matt with blue icing and yellow cake head to toe!

My father laid a towel down in the van for Matthew to sit on, then made him shower in the POOL SHOWERS, you know, the ones with spiders in the corner and that smell vaguely of chlorine and pee? The HORROR! For my 9-year-old self, there could be no better punishment for my dastardly brother.

Now, I realize there are some parents who would cry foul over this. They would say punishments should be more related to the misbehavior and that fear is unnecessary and cruel, and they’d probably be right. But you know what? Matt never pushed me out of the hammock again, we all had a good laugh after the fact (him included), and now that Dad is gone, this is one of our fondest memories. It always makes us laugh, and I respect his creativity in parenting.

I was so excited to see my prompt (#1) posted at Mama Kat’s for this week’s Writers Workshop! And then I realized the story I created the prompt around doesn’t actually fit the prompt, because it’s about my brother being punished and not me. But whatever. I’m taking artistic license. If you can’t do that when it’s your own prompt, when can you, right?

Spiteful Cat

Another Clip

I thought the Rosie show with Ann and Jonathan went so well today! Below is another clip from the documentary. Enjoy!