Musings of a Marfan Mom

Advice

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Got to hit the gym for the first time in a couple weeks today! My doc had changed the dosages on my heart meds and that left me practically a zombie (definitely glad to be getting back to my regular dose!), so there was no way I was going to be exercising. I never thought I’d say it, but I missed working out! I usually feel exhausted afterwards but I also feel like I really accomplished something (much like when I did swim team in HS, which is actually a pretty funny story!). Anyhow, I love listening to ska/”punk” (think Reel Big Fish or Yellowcard) and Will Smith when I work out. What are your favorite gym soundtracks?

Also, I need some advice. As I mentioned before, I have been asked to speak on the Living Successfully panel at the National Marfan Foundation conference in 3 weeks. However, I really don’t know what I should speak about. It’s pretty open-ended…I need to speak on something that relates to living successfully. I’ve got 5 minutes. My question to you is this: Now that you’ve heard some of my story (I still have one entry left in the My Life With Marfan “series”), what should I talk about?

Some ideas I’ve thought of:
– How and why I started volunteering/why it’s important to me to volunteer
– Being a mom with Marfan
– My surgeries (which I’ve had, how the recovery was)
– Something else?
– Some combination thereof?

Any suggestions are very welcome! I need to get writing in the next few days so I’ve got time to send it to Eileen at the NMF for editing. Thanks!

Oh! One other thing! Any advice on freezing fresh veggies and drying basil? And when I’m harvesting basil, how do I do that? Just pluck off the leaves? Cut a certain length down on the stalk?

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  1. Being a mom with Marfan, hands down. Maybe it's just me, but that kind of seems like the culmination of your success story. Or maybe it's just because I'm lost in Mommyland right now.

    Either way, whatever you say will be fabulous.

    And I work out to Michael Bolton and the Spice Girls. :)

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  2. I completely agree 100% with Abbey. And I'm not even a mom yet.

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  3. My favorite workout music is atmo-melodic metal (like Evanescence only better) and boy bands. :) Unfortunately, I don't have an opinion on your first topic and no knowledge whatever concerning gardening… :/

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  4. I agree with the others (but I am also lost in mommyland), especially the first comment about it being the culmination of your story.

    Curves has its own "special" music, but if I've got my ipod I listen to anything with a good, fast beat. Some of the artists I have are Yellow Card, All American Rejects, Fall Out Boy, Lady Gaga, and the Blackeyed Peas (sp?). Yup.

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  5. Okay, so I think that you should discuss two things. Volunteering and being a mom. I am not a mom, and while I think that is by far and away your biggest accomplishment, you want to ensure that you capture the whole audience. I recommend you starting with Volunteering, and then moving on to the mom thing. I think you might be able to give everyone a good boost that way. And I would be happy to read your speech and help you out with it anytime. Just let me know.

    Oh, and you just pluck of the Basil leaves, put the veggies in a bag, use a straw to suck the air out, and freeze them, and you are good to go. And I work out to lots of stuff, but I really like Yellow Card, Veggie Tales (no comment), and Relient K.

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  6. marfan mom, hands down. wait, somebody already used hands down. so do it feet up, too.

    it's got the same ring as matt's TFA man. do it. and design a superhero figure to project above you while you speak. everyone will clap, and possibly some will bow down. it'll be really cool.

    also, i have NO idea what i'm going to do with my life. an MPH actually did cross my mind, so we'll see!

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  7. I think you should mention your master's degree and how you've created a life and future for yourself in your education, volunteering, marriage and family. I've been liking jack johnson lately, but some of his songs are a bit slow-ish.

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  8. You should definitely speak about being a mother with Marfan. It's a huge accomplishment already and I think you would be inspiring. Thanks for sharing all that info and also your experiences with Marfan celebrity. :)

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  9. I totally agree with the below – Mom with Marfans! While this may only be relevant to the older teen audience, I think everyone will appreciate it in some way. I did that panel when I was about 16 and I spoke about how having Marfans forced me to explore more creative endeavors in my life (as opposed to the usual sports, etc.)

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