Wednesday, March 2, 2011

My New Norm


My new norm.

On Monday, I was in the middle of dealing with my numerous post-vacation piles - laundry, mail, dust, e-mails, etc - when my telephone rang.

I glanced at the number - didn't recognize it - and answered it anyway.

That's because there could always be an adventure just waiting at the other end of the line, so I HAVE to answer phone calls. Let's just say that if I were a cat, curiosity would have killed me a LONG time ago.

The woman on the other end identified herself as Leslie, and it turns out that she is a moderator of a national forum that assists people who are struggling with erythromelalgia. Or, EM for short.

Leslie and I talked for almost an hour...and she was a wealth of information.

Some things I learned:

*EM predominantly strikes caucasian women. That would be me.

*EM predominantly strikes between the ages of 40 and 49. That would be me.

*EM predominantly strikes people of northeastern European descent - which includes Sweden. That would be me.

*EM can affect each person very differently...some people get it in their feet, some their hands, some their my case, it seems to be predominantly affecting my hands and my lips.

*EM is not curable...but it can be treated (somewhat) by learning the triggers and avoiding them.

After hearing my story, Leslie suggested that besides avoiding alcohol, caffeine and sugar, I should strongly consider a gluten-free diet. Which, actually, has been suggested to me more than once in the past, but I've been too lazy and too unmotivated to educate myself on just how to do that.

She also suggested that, because EM sometimes likes to "piggy-back" on to other diseases, such as ALS or MS, I need to get tested as soon as possible to rule those out.

Leslie's own story with EM is heartbreaking. She was living in New Orleans in 2008 when she noticed her fingers were swelling and burning. After several months of not getting any relief, she eventually went to a doctor, who wrote the world "Erythromelalgia" on a piece of paper and then said, "There. I suggest you become your own advocate on this - because there's not much known about it."

Leslie's EM eventually moved into ALL of her extremities - hands, feet, face, mouth...and her #1 trigger is heat. She's been moving gradually north across the country as her symptoms have gotten worse; she's now considered 100% disabled and is unable to work. She sleeps during the day and goes outside at night, because of the night time coolness.

That? Would suck.

As for me, I didn't do so well last week on avoiding the triggers. Alcohol, sugar AND caffeine were pretty much the norm for me last week in Florida with my girlfriends. I take full responsibility for my actions - I can't blame anyone but myself. I knew I would pay for it, and I did.

Now, its back to reality and it's time to get serious.

Wish me luck.

And if anyone out there has had success going gluten-free, I would LOVE any advice, resources, tidbits, etc you can give me.

P.S. Found a great blog by another EM patient - check out NotSuperHuman.




Kathie said...

I am sorry to hear you have a diagnosis, but happy to hear it as well, now you know there is a reason for your symptoms. Elizabeth Hasselbeck from The View, found out after she came back from "Survivor" that the reason she had no issues down there was she had no gluten. She has a book titled, The G-Free Diet: A Gluten Survival Guide. I read a portion of it on Amazon out of curiosity, maybe this would help get you started?

Jenny said...

AI diseases are so complicated. I have a really excellent naturopath who will do IV therapy, etc. I follow a predominately GF diet...more GF sensitivity than allergies and it does help some with my Fibro and Hashi.

I'm sorry you're on this journey.

If you have a Sprouts by you they have a lot of GF stuff. Trader Joes also has a complete list (at their service counter) of all GF foods which makes it really easy to shop there.