May 19, 2014

Living with Ehler-Danlos Syndrome

(Happy [late] birthday Trace. Let me know if I got anything wrong; you can click to embiggen. I have a printable version so you can carry copies in your purse to hand out as needed. Ha. xoxo, J.)

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  1. Oh, my gosh this is so adorable. Is it OK to say adorable when it really is sad and breaking my heart? Can I enjoy an adorable moment and still be sad?

  2. tracy

    OH MY GOODNESS! I love this so very, very much! If I could jump up and down and scream I would, but it would probably make me pass out, so I will refrain and satisfy my urge to do so by using big capital letters to say “THIS IS PERFECT! I LOVE IT!”

    I need to make 100 copies of this, STAT. Just yesterday at church, a well-meaning soul said “Oh, you are walking, you must be all better!” What am I supposed to say to that? I don’t understand. Does someone really think that because I am conscious at the moment they see me and walking in an upright position like most of the human race, I am healed? Out of pain? That I can sit? Lift my arms? Stand for longer than 15 minutes? Chew without my jaw popping? I tried to smile and said “It is good to be walking today.”

    This is the bestest birthday present ever! Thank you so much for blessing me with your hilarious sense of humor, creativity, mad skills, and most of all, your friendship and love. You can break into my blog anytime!

  3. Wow-!! I love it. What an awesome, awesome friend you have to make you this.

    • tracy

      For the past several years, she has been saying I need a brochure to hand out to people, but I didn’t ever think she would actually do it! What a fun surprise to wake up to her cuteness posted on my blog!

  4. Abby

    Jessica is the BEST!!! Love this and LOVE YOU! The brochure idea is brilliant. So many times in my life I’ve wanted a sign or a sticker explaining what is going on. People truly are well meaning and want a trial to be over for you. Its hard to explain that sometimes there are no answers except for endurance. Hugs!!

    • tracy

      Exactly! People hardly ever ask how I am. Instead they say something along the lines of “You’re doing better, right?” or “Good to see you’re all better now!” or “why haven’t they fixed you yet?” I know they mean well, but oh, my I have no idea how to respond. I certainly don’t want to be a Debbie Downer and tell them how flawed their perception is, how many bones are currently out of place or stuck, how much pain I am in, or when the last time I passed out was, but my sense of honesty has a hard time handling allowing them to have incorrect information. I have decided our culture does not do well with pain and suffering. We want it fixed right this minute and we don’t want to believe that there is no quick answer. So our social jargon has adopted those ideas and we don’t even ask how people really are – instead we put words in their mouth telling them how well they are doing.

      It is certainly something I have done to others and strive hard to not do now that I have been on the receiving end of this unhelpful “encouragement” and I hope my being very public with my story will help others to be more accepting of the very real suffering that is all around us in many different shapes and forms.

      Love you Abby!