Tag Archives: trouble

The Worst Winter Weather

For Mama Kat’s Writers’ Workshop, I intended to write on prompt #2: describe your worst winter weather story. However, as I explained to Mark the particular story I’d chosen (how my 23rd birthday was ruined), he pointed out that really, this is the story of HIS worst winter weather experience. He’s totally right. He’s also gracious enough to let me write about it anyway, as long as I acknowledged I’m tweaking Mama Kat’s prompt.

In Ohio, snow comes Oct. through April. It shouldn’t have been a surprise that we had an honest-to-goodness blizzard in March, but it was, mostly because I had plans. See, Mark and I had been married for almost a year at that point, but only been living together a couple of months. He was finishing his Masters as I was starting mine, so he moved back in with his parents and commuted the 3 hours to visit me on weekends. As you can imagine, it put a kink in socializing with other couples.

But not for our birthday! Our birthdays are in the same week and I had planned a small joint celebration dinner party. Our good friends Megan and Scott were coming over and I was making the Brasilian meal I make every year for my birthday: pastels and black beans and rice. This was just the sort of thing I imagined we’d do as newlyweds.

Then the blizzard hit. The day of the party.

Early in the day, I realized I was missing a few ingredients and asked Mark to go to the store. The roads were questionable, so he decided to walk the 8 blocks to get there. I called him a little later b/c I’d forgotten to add something to the list and unbeknownst to me he was already halfway home, so he turned around and went back. NOTE: If I’d KNOWN he’d left the store I would have told him to forget it. Just sayin’.

Halfway through making dinner, Megan called to tell me that their car was stuck and they wouldn’t be able to make it. I was so disappointed! Stupid snowstorm! Well, the roads were pretty clear by then, so Mark decided to go pick up Scott and Megan. Our car was snowed in too, so he gave a kid with a shovel some money to dig us out. The car moved about 5 feet before getting stuck again, and that was that.

Mark and I enjoyed our Brasilian meal by ourselves and stayed home for a few days. I believe even church was canceled that Sunday. And come to think of it, I never fulfilled my promise to Megan to cook her a Brasilian meal. It was the worst winter weather for me because I lost my chance at our dinner party, and for Mark because he actually had to go outside in it.

Here are some pictures from Blizzard 2008:


And can I just say? I am LOVING being in California now!

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Marfan Through a Husband’s Eyes

Today is the last installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

You’ve heard from my mother and my brother. So, today I bring you my fantastic husband, Mark.

Mark and I met over 6 years ago, in college marching band, and were dating within 3 months. He was the very cutest trumpet player and leader of the band cheers. These days he’s an analog integrated circuit design engineer. In his spare time he enjoys building blocks with Menininho, experimenting in the kitchen, and playing Starcraft and TES4 Oblivion.
I always dated tall girls.

I mean, I was the shortest student my age all throughout elementary school, and the situation did not improve much in the following years. Pretty much everyone looked ‘tall’ to me. Nonetheless, I always dated tall girls.

Therefore, pictures of Maya and I from some of our early dates, when she would show up in high heels and stand, literally, head and shoulders above me, really do not seem all that unusual.

Homecoming 2005

I don’t remember when she first mentioned “Marfan Syndrome” (or, as I incorrectly called it for at least a year, “Marfan’s”), as it was never a game changer for me, just another data point. I certainly did my research, starting from Wikipedia. then going into greater detail, and reading up on resources from Johns Hopkins, The Mayo Clinic, and papers and publications by Hal Dietz. I wanted to be able to join dialogues between her and her doctors on an educated level, to be able to logically take and argue her side when a doctor brushed off an event, and to understand the many choices she made about her health.

We hadn’t been dating too long (well… 2.5 years?) when our first emergency room trip together occurred. While dancing at our university’s winter formal in downtown Cleveland, Maya began to experience a rapid and arrhythmic heartbeat, which was recorded by her Holter Monitor. Maya was engaged in an extended effort to convince her doctors that these arrhythmic episodes were something worth looking at, rather than just an example of running-up-the-stairs-too-fast; so even as I helped Maya recover, we hurried to a phone to send the results to the hospital computer. The on-call, however, gave us a surprise, saying that there was “something unusual” and told us to report right away to the Cleveland Clinic Emergency Room. Though nothing came out of the late-night-became-morning visit and we never quite learned what “something unusual” meant, the following five hours waiting, talking, and playing card games in a room at the ER turned out to be one of our most memorable and most enjoyable dates.
“Conference” was a term I had heard used with reverence by Maya ever since I first learned of Marfan syndrome. Supposedly, it was a veritable Mecca in more ways than one for the Marfs… “Someday, you’ll get to see it, Mark”. Years later, I was taken along to meet the Marfamily at the annual National Marfan Foundation Conference which was held, that year, in Boston. Unbeknownst to me, the great Marfamiliy honors marital affinity–I was now married into this family as much as any “in-law”. I was certainly an outsider to this network of camaraderie stronger than that forged between my lab-mates in the trenches of 6 AM graduate school meetings, but invited nonetheless. They danced, discussed, met, and mingled, and I saw Maya naturally slide into her role as leader, older sister, and sometimes even mother of the hundred-odd middle- to high-school aged kids gathered in the teen program.

But Marfan syndrome exists outside of the momentous occasions, as well.

Marfan syndrome’s activity restrictions have, over time, extended to the both of us in one way or another. We obviously do not hike winding trails and climb gorges like I did when I was younger, nor will long walks on the beach ever be a part of our repertoire. The opposite is true in other ways: As Maya has a limited ability to stand for long periods of time, I am on my feet from the moment I get home from work until well after the baby is asleep in bed.

Most unusual–to me, at least–is that Marfan syndrome seems to produce anger. I attended a support group for “unaffected spouses”, as they called us, at the Boston NMF Conference. The opinion there was fairly universal that the pain, limitations, and uncertainty of Marfan syndrome engendered a vague, undirected anger that seemed to creep into relationships. But, as has been mentioned by Maya’s mother and brother both, Maya began long ago and continues to take this anger and drive it, bit by bit, into her unending activism and defense of those persons and causes she takes under her wing.

We have had our share of scares from doctors, both from medical speculation (“I think she might not have Marfan Syndrome, but rather …. “), or right out misdiagnoses (“I think it’s a dissection! … oop. No it isn’t. Again.”), but they are events that we address as they come and pass as they go, rather than living in fear of them. When Maya’s geneticist speculated that she may have the life-threatening Vascular type of Ehlers-Danlos syndrome, I saw no reason why that should change the nature of our relationship. Maya and I approached the information with a similar stoicism, yet we still met the negative test results with a doubled sigh of relief.

It is because day to day life does not get to be put aside that we are able to continue; to get engaged in Washington DC, get married in Columbus, have a son, and begin to raise him in California.

Marfan syndrome makes every day harder than it could have been, but it is a part of who Maya is, through and through. And now, it is a part of me, too.

And I wouldn’t trade it for the world.

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A Hitch in McKenzie’s Plans

McKenzie’s family hasn’t posted anything on her Facebook page, but I just read this article in the Tallahassee Democrat, which says McKenzie’s trip to Johns Hopkins for surgery has been put on hold indefinitely. She was supposed to fly out this morning, but yesterday the local hospital decided to refuse a medical release. Without that release, the pilot who had volunteered his time and plane is not allowed to fly her. The hospital has said that they will only release McKenzie to a Johns Hopkins medical transport.

Please pray that the bureacratic details are taken care of soon, and that Johns Hopkins will be willing and able to send a plane to get McKenzie, so that she may have her surgery.

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Please Help McKenzie

McKenzie is a 2 year old beautiful little girl with a very severe form of Marfan syndrome. I first met her mother, Jennifer, a few months ago via NMF Connect, a social networking site for people with Marfan syndrome & related disorders and their families. McKenzie’s aorta is now larger than that of even many adults with Marfan, and she desperately needs surgery. If she does not get this surgery soon, she will die.

McKenzie’s family has arranged the top surgeon in the country to perform her surgery, and he is at Johns Hopkins. However, there are many things that McKenzie is going to need in order to make the flight, and that is where we’re hoping that you, your friends, and your networks can come in.

AngelFlight has agreed to transport McKenzie from her home in Florida to Johns Hopkins in Maryland, but in order to do so, they need the following items:

– Plane to fit 5-6 people and have access to use a AC adapter or Car Adapter to plug in her equipment.
– 2 ventilators weighing appx 10 lbs each
– 1 suction machine weighing 8 lbs
– 2 oxygen tanks
– Emergency bag with supplies
– At least 2 other travel bags

If you, or anyone you know, is able to help with these items, you may contact Jennifer via McKenzie’s Facebook group Pray for McKenzie. Thank you so much!

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Beating Murphy’s Law

Murphy’s Law of Motherhood: When you really, desperately need human interaction that doesn’t include phrases like “Let’s change that stinky diaper!” and “Ba-baaa-ba-ba,” that is when the universe will intervene to try to prevent it.

I’ve been looking for a playgroup, or class, or SOME way to meet women. A few ladies in my congregation get together two or three times a month to have lunch at the park, which I love, but I need something more often, especially as Menininho is getting older.

Finally, after some repeated (loving) nagging on my husband’s part, I signed up for a formal group. There are dues and thrice weekly outings and mothers’ nights out and family parties and guest speakers and the whole nine yards. Last Thursday they were meeting at a local library for a Mommy and Me story time. I got all dressed up, even did my hair (!), picked out the baby’s clothes carefully (jeans & a button down), and we drove 30 minutes to the appropriate library. Naturally, the event had been canceled and no one had changed it on the group’s calendar. Lame.

Today was my 2nd chance: Mommy Mall Walk. So of course, this is the one morning in the history of our being married that my husband misplaces his keys. We spend a half hour looking around the house, which of course means I’m not browning the stew meat for tonight’s feijoada. Just as I tearily hand Mark the keys to my car so he can get to work, the keys magically appear out of the back of the diaper bag. Say it with me: Hallelujah!

Almost as awesome? I manage to brown the meat, get dressed, get the baby dressed, and packed up in enough time to stop by Starbucks. Am I the only person who feels just a little more adult/put together/confident/cool carrying a cup of Starbucks hot chocolate? Probably. But that’s ok, because this post isn’t about Starbucks, it’s about how

Ohmygosh I carried on conversations, conversations with full sentences, with a group of other women whom I had never met and who were really nice!

I’m going back on Friday.

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First Bite



* Not quite a Wordless Wednesday today. Menininho got bitten for the first time tonight. We were at a party and another little boy gave him a hug, then chomped his face. Some kisses and hydrogen peroxide later, Menininho was just fine and we’ve all had a laugh about it. 🙂

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An ER Headache

This is a post that is not a particularly cheery one, so be forewarned. Part of the purpose of this blog is to document the ins and outs of Marfan, and I feel that needs complete honesty.

I’ve spent the better part of 2 of the past 4 days in the Emergency Room. Saturday morning I woke with a migraine that turned into the worst headache of my entire life. Concerned it might be a brain bleed (even the illogical becomes logical with Marfan), Mark and I dropped Menininho off with friends and headed to the ER. Several hours later we learned I’d had my first cluster headache.

The good news? According to Wikipedia, cluster headaches “may be the most severe pain known to medical science.” That means I was TOTALLY justified when I called Mom on the way to the hospital and said something to the effect of “Mommy, I’m probably dying so I just wanted to tell you I love you and Mark’s taking me to the hospital.” The bad news? They’re kinda chronic. And when I called my Marfan cardiologist, he told me I was his first Marfan patient to have them (and he has hundreds of Marfan patients). Cluster headaches aren’t directly related to Marfan, but they’re related to migraines, which people with Marfan tend to get at a higher rate than the general population.

So, knowing that I’d be going to get more cluster headaches over the next few weeks, I was anxious to get ahold of some medication. My cardiologist approved a particular drug for me that we’ll call Q. My general practitioner (GP) called in the prescription for me last night, just in time for me to get the beginnings of another cluster headache. The medication worked like a dream, except for one thing. After about a half hour, my neck began to tighten. I got dizzy and couldn’t hold my head up. I was terrified.

Mark called the hospital and, to make a long story short, it turns out I was never supposed to be taking the medication! However, neither my doctor nor the nursing staff had bothered to make me aware of the late-in-the-day change of plans.

After a fitful night of sleep, I called my doctor’s office and complained. Because the pain woke me up 2 hours early, I had PLENTY of time to summon all my righteous anger and figure out exactly what I was going to say. There was a lot of blame shifting, but I feel like the issue was resolved as well as it’s going to be. I asked when I could expect my neck to start feeling better, and the nurse said she’d call me back.

When she did, she told me I needed to go to the ER right away because my GP was concerned I was having a vertebral artery dissection, which Q has occasionally caused in patients with Marfan. A dissection is a tearing of the artery and in Marfan it’s very rare to get dissections outside of the aorta, the main artery running from the heart. Any of my Marfan readers know what kinds of thoughts run through your mind when your doctor says “dissection.” They’re life threatening. There is a moment of panic (“Is this the Big One?”) and then you go into the Zone and get done what needs to be done.

“Mark!” I called from the bedroom. “Doc thinks one of the arteries in my neck dissected. Time to head to the ER. Call a sitter while I get dressed.” And looking back, we were efficient. In a matter of minutes we’d found a sitter for the baby, gotten all of us dressed, emailed my cardiologist to let him know what was going on, packed Menininho’s diaper bag, and rushed out the door.

Despite the nurse’s assurances that I would get in for a CT quickly, I found the ER to be mostly a waiting game. It took almost an hour for a doctor to see me (who told us he didn’t think I was having a dissection), and then another hour for him to page my cardiologist. It was decided I probably wouldn’t need a CT because I wasn’t actually having symptoms of an arterial dissection. My GP was totally wrong. But, it took another 3 hours of waiting and not being allowed to eat (“just in case”) before I was sent home. And of course my cardiologist came down and advised me that if I’d just called him directly in the first place, I could have bypassed the entire ER “experience.” (Which, by the way, included a neighbor with a gunshot-wound-infected-leg and a hypothermic drunk who was prone to shouting.)

My neck still hurts.

So, I don’t write this as a woe-is-me post. Please don’t take it that way. Most of the time I view Marfan as a blessing. If I had the opportunity for God or a magician or whoever to take it away and make me totally healthy, I’d turn them down. I am happy with the person that Marfan has made me and I am grateful for the opportunities that I’ve had working with this foundation. But Marfan IS a chronic, life threatening illness and some days really do SUCK. And I think it’s important to acknowledge both the good and the bad, and then try to turn the bad into a learning opportunity.

So, to my “Marfriends” and myself:
1) Have a better emergency plan than I did (or just use the NMF’s, which is useful even to those without Marfan).
2) When possible, consider bypassing the other doctors and go straight to your cardiologist whenever there is ANY remotely cardiac issue.

And to anyone who actually read this post to the end, go buy yourself some chocolate; you deserve it!!!

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