"Suffering the Slings and Arrows of Outrageous Fortune"

A year later…

A year ago, Emily had spent a very unpleasant few hours in the ER, endured a very bumpy, rapid trip to Indianapolis in an ambulance in the middle of the night and was recovering from an emergency appendectomy that was done in the wee hours of the morning. It was a frightening experience but she endured like the trooper she is and came out of it better than we expected.

It is hard to believe a year has passed – in some ways Em has made real progress in fighting EDS & Company, in other ways, we are still fighting the same battles. Certainly, some of the issues have worsened and we go round and round trying to find answers. And, it has been a long recovery period. I don’t know that she has really fully recovered from the surgery even now but, she has made some strides in other areas.

The surgery revealed some problems that desperately needed addressed – a little like peeling back the layers of an onion. We are still peeling away and trying to figure out what those layers reveal. One of those layers will be peeled back on Monday – she will finally have a gastric emptying study. Who knows what it will reveal, but it is long overdue.

This business of living – day in, day out, year in, year out – with EDS is exhausting and frustrating. The problems never seem to stop, never really go away – they seem almost eternal. You address one issue and another pops up. Like running on a treadmill, you feel like you never really get anywhere.

But, a year ago, we weren’t thinking about any of that – we were just feeling incredibly blessed to have our daughter safe and sound and still with us. Not a bad thing to remember when dealing with the phone calls, appointments, tests – all of the minutia and uncertainty of today.

Comments on: "A year later…" (3)

  1. Peeling an onion is such a great analogy! I wish Emily all the best with this next medical adventure because isn’t that what they all seem like sometimes. Adventures that you really don’t know what they will reveal. I also want to say a THANK YOU on behalf of your daughter for which I don’t truly know except what you have taught us about her. But THANK YOU for advocating for her, loving her, caring for her, being a bulldog for her, never giving up searching for answers, for agreeing to burst through or propel over the endless brick walls. I have a parent just like you and I can’t possibly in words ever express my gratitude and love for what my Parent does for me. But I did want to take a moment and send a hug your way from all the sons and daughters out here… (((Hugs)))

    • Thank you so much for your kind words! This is a hard and frustrating journey but what other choice is there but to keep trudging along? Your words of encouragement are sweet and made me smile!

  2. It’s great that Em has made some progress in the past year, even though sometimes peeling the onion reveals more layers than you ever imagine. Reading your Blog has inspired me to start one of my own, on EDS but also the beginnings of my journey with Mast Cell Disease http://mastcellblog.wordpress.com. Because of reading your Blog, and you pointing me towards the Inspire EDS support group, I persevered with my research into mast cell disease and now have an appt with a Mast Cell consultant coming up in June. Thanks for sharing your story xx

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