Tag Archives: husband

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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2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya

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Christmas Eve

I love Christmas. I love the music. I love the crowded malls. I love the decorations. I love the FOOD. I love the traditions.

The best part about our first Christmas as a family of three was the opportunity to create new traditions for our family. Sure, it took some haggling (more than I expected) to figure out which of our respective family’s traditions we’d carry out this year for Menininho. Christmas Eve we’d drive to look at lights and open up our Christmas pajamas. Christmas morning we’d do stockings, read the Christmas story from Luke, eat our (this year, gluten free!) cinnamon rolls, sing a couple Christmas carols, and open presents.

But Christmas Eve I realized we had no Christmas Eve dinner tradition! For whatever reason this seemed totally unacceptable to me, and I pressed Mark about it. We decided that cheap Chinese takeout on the couch and It’s a Wonderful Life would be perfect. And really, this should be NO problem because we live within walking distance from a strip of Chinese restaurants.

We bundled up the baby and ventured out. Our only caveat was needing to find a restaurant that 1) didn’t use wheat in their soy sauce OR 2) had yummy dishes that used no soy sauce. Unfortunately, this was harder than we thought. For starters, I couldn’t convince Mark that it was probably easiest to ask “Does your soy sauce contain wheat?” than to ask “Do you have a gluten free menu?” A lot of people have no idea what gluten is, or may have gluten-less dishes and not know it, but not have a real gluten free menu (we’ve found most restaurants do NOT have such a menu). After about 10 restaurants it was obvious that no one understood what he was talking about, and we didn’t want to chance him getting sick.

Our backup plan was to drive to the mall, where we knew their Chinese restaurant used MSG in their soy sauce, instead of wheat. Unfortunately we realized AFTER we’d gotten Menininho into his shoulder and walked up from the back of the parking lot that the mall had closed 2 hours previous.

I ended up eating 2 cookies and a bowl of applesauce for dinner. I think Mark skipped it entirely. We’ll prepare better next year!

What are some of your holiday traditions? Did you start any new ones after you had kids?

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Persimmons


His new favorite food

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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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Merry Christmas!

Today is SITSmas, a day for all the SITS sistahs to post holiday greetings to each other.  This sounded like a lot of fun to me, and I thought it also makes a great opportunity to wish a happy holidays to all of my readers.

So, from my family to yours, Merry Christmas, Happy Hannakuh, and Happy Kwanzaa!!!

Love,
Maya, Mark, and Menininho

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O Christmas Tree

Somewhat on a whim, Mark and I decided to try out a Christmas tree lot over by Target Friday night. We’d been planning on driving to a tree farm the next afternoon, but figured this might save us some cash (and 2 hours of driving).

It was a little bit pathetic…the trees weren’t clearly marked, the selection was poor, Menininho was crying in his Ergo, and I was dumb and wore flip flops. The first tree we liked appeared to be in the $30 section but was misplaced and there was no way I was going to pay double. Eventually we found a 5 ½ ft Douglas Fur for the right price and settled in line to wait for it to be cut.

The workers there were friendly enough. One woman proudly told us how the entire lot was run by her brother’s search light company (which explained the ginormous search lights beckoning to everyone within 30 miles). Another offered us free persimmons.

[Mark is currently trying to Google “how to eat a persimmon,” but got the response “how to eat a person.” Gross.]

The real highlight though was in getting the tree attached to the car. The man assigned to help us chatted amicably to Mark about the pain medication he’s taking and made faces at Menininho. Mark hoisted the tree onto the roof and the man insisted on doing the tying. After a bit though, we noticed that the man didn’t appear to be doing much. In fact, his hand was uncomfortably close to my ribs. In fact, he wasn’t moving. His arms dangled into the car through the partially opened window, his face was pressed up against the glass except for his nose, which hung over the window like an ornament hook.

He was either sleeping or had just suffered a major heart attack and died. Either way, both were kind of awkward.

I motioned over to Mark to say something because if I opened my mouth I was going to burst out laughing. He walked behind the man. “Um, can I help you?” And then again, louder. The man jumped up! “Do you need help?” he asked confusedly. And then, he just walked away.

Mark finished tying the tree to the car and we left in a hurry.

Never a dull moment!

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