February 14, 2011

Monday Miscellany

I'm going to share something very different with you today. It's not scrap related but it affects my ability to scrap, so it's important to me.

I have Ehlers-Danlos Syndrome Hyper-Mobility type. Now most of you have probably said "what the heck is that"? A few of you may have said "I actually know what that is". For the majority of you, I'm going to share. The easiest way to explain this is my tendons and ligaments act like taffy. Most everyone else's tendons and ligaments act like rubber bands. This means my joints are more likely to dislocate and be out of place. I am a chiropractor's nightmare. If you've ever heard the term "double jointed", it applies to me. People like me are the definition of double-jointed. I have a wider range of motion and the ability to twist my joints and limbs in ways that another person cannot. You know that scratch you can never reach on your back? I can.

I am a recently diagnosed ED patient. If it had not been for my daughter wanting to play basketball, we would have never known that not only did I have ED, but my daughter has it as well. It's good we're both diagnosed. Her early so she can prevent the damage that I've already done to my body. Me, because I now know why I've had certain health issues all my life and always had doctors looking at me like I'm a hypochondriac. I am an atypical patient, in that, I do not show symptoms very easily.

So, how does this affect my scrapping? My finger joints frequently pop out of place. It's pretty painful and frequent mouse usage does not help. My wrist and elbow joints don't usually dislocate but can become painful from overuse of a mouse and laptop. My neck is in a constant state of pain for various reasons. On a good day, I can scrap and be at the computer for most of the day. On a bad one, I'm lucky to be there for one hour.

There are many other “symptoms” I have that affect my daily life, but it would sound like a laundry list for whining if I listed them all here. Now that I’ve shared this with you, I’d like to also share some more information about the disease. There is also a “Spoon Theory” page, I’m going to share because it is very appropriate for someone like me. I hope I’ve been able to share something new with you and maybe helped you gain an understanding of why someone like me who is “always sick” is truly sick and not just “faking it”.

So You Think You Might Have Ehlers-Danlos Syndrome?

But You Don’t Look Sick, The Spoon Theory by Christine Miserandino

1 comment:

  1. Thank you so much for this post. I want to let you know that I posted a link to your blog in CBH Digital Scrapbooking Freebies, under the Page 8 post on Feb. 14, 2011. Thanks again.

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