Musings of a Marfan Mom

March 23, 2010
by marfmom
10 Comments

For the Love of the Needles

I have a new love.

holachospital.com


No, it’s not masochism.

It’s acupuncture!

I’ve talked before of my chronic pain. It had gotten to the point where I couldn’t really cook dinner anymore because 10 minutes of standing made me want to cry, due to my scoliosis and dural ectasia. Whenever I menstruated (sorry for those of you who are afraid of that word!), my fibromyalgia would flair for days. During these times I would just have to sit on the couch and have nothing touch me, sometimes for hours.

Not exactly conducive to parenting a toddler, you know?

So, in October, I made an appointment for a pain clinic. It took several months after that, but I was able to start a twice-weekly physical therapy regimen and that, combined with The Situation, took the edge off.

Then, a couple weeks ago, I started acupuncture. I am a new woman. I know that sounds dramatic, but it IS!

I hate needles. Hate them. But, I’ve always just known that acupuncture would work and talked myself into being ok with needles for this one purpose. After the initial consultation with the doctor/acupuncturist, she agreed with me. She told me to expect results in about six sessions. Each session is 30 minutes long. I lay on my left side; she places needles in various places depending on where I’m having pain (usually one in the head, two in the ear, a few on my neck, back, elbows, ankles, and top of my feet).

After ONE session, I was fibromyalgia flair up FREE for my menstrual cycle. I do not remember the last time that happened. It’s been years.

I’m not without my sore days, my stiff days, but the relentless pain is gone. I can cook. I can take my son to the park and walk around there for an hour. Some days, we go on MULTIPLE WALKS. How now, brown cow?!

You know what we’re doing today? Going to the hospital to meet two teens for a few hours. Then we’re going to go home, maybe Menininho will take a quick nap, and go on a walk with our friends, play at the park for a bit. And tomorrow? A walk at the mall with our playgroup, another walk to the park in the afternoon. I could go on.

Point is, I can DO these things. Because of the needles.

http://i.telegraph.co.uk

March 22, 2010
by marfmom
0 comments

Changes in the World of Aortic Disease

In case you haven’t heard, there’s more great news on the aortic dissection front! This news is two-fold.

First, the American Heart Association and American College of Cardiology have finally released their Guidelines for the Diagnosis and Management of Patients with Thoracic Aortic Disease. This covers Marfan syndrome and related disorders, like Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome.

Now, it’s important to get the word out about these new guidelines of course, so the National Marfan Foundation (NMF) convened the Thoracic Aortic Disease (or TAD) Coalition. Actress Amy Yasbeck, wife to the late actor John Ritter (who died of an aortic dissection in 2003), wanted to raise awareness of aortic disease. She found the NMF, they suggested creating a coalition and put all the groups together. We’re very grateful that Ms. Yasbeck was so open to including ALL the genetic factors of TAD, not just familial aortic aneurysm (FAA), which is the illness that caused Ritter’s death (he’d had no idea that he had it).

I think the most exciting aspect of the coalition is the new Ritter Rules. Named for John Ritter, they’ve been put together to help patients be better advocates for themselves in the event of an aortic dissection, and to help identify their risk factors for aortic dissection to try to prevent one from occurring. Overall, I think they’re very patient friendly. Each point (urgency, misdiagnosis, imaging, risk factor, etc.) is clearly outlined, followed by a 1-3 sentence explanation. My only quibble is that I think they could have used simpler vocabulary at times, because the average reading level in America is between 4th and 6th grade, but that’s nit picking.

I also recommend taking the time to read people’s personal stories. My friend Steve Marpman is featured, and his story is amazing. Also included is Allison Dunvegan Reed, whose mother I know.

Be on the lookout for a lot more press on the new guidelines and Ritter Rules over the next few months!

Ritter and Yasbeck, courtesy of www.etonline.com