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Down the Rabbit Hole
I have come to realize exactly how much living with a chronic illness is like Alice falling ‘down the rabbit hole’. Having a child with Ehlers Danlos Syndrome, a rare genetic condition, is strangely...
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EDS Awareness Month
May means more than spring weather and sunny days. To those of us living with Ehlers Danlos Syndrome it means a month of promoting awareness, of our voices being heard. I know for myself, this is...
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A picture of EDS
This is what EDS looks like. Well, at least one tangible aspect – most of EDS is impossible to capture on camera, being an invisible illness and all. An example of bruising in EDS. That is Em’s left...
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“Strong is what happens when your weak runs out”– A guest post by Emily
11 years old, and EDS had struck. I lost my life. Now the meaning of ”Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless....
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What living with an invisible illness means…
Sept 10 – 16 is National Invisible Illness Awareness Week. I have been checking out the great info on Invisible Illness Awareness here and have been making plans on how to ‘celebrate’ next week. I...
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Down the Rabbit Hole: Life with an Invisible Illness
In honor of National Invisible Illness Awareness Week (September 10 – 16, 2012), I have decided to repost an essay I shared a few months ago. This essay sums up what life has been like for my family...
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My new project…
I have previously mentioned that I am working on a new project and I think I am finally ready to share it with you… I am writing a book, with the help of my daughter. The goal is for this book to be a...
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Rare Disease Day 2013
When you live with a rare disease, it is easy feel like you are utterly alone in a very small boat adrift on a very big ocean. It is an overwhelming, terrifying feeling. EDS is considered a rare...
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Ehlers Danlos Awareness Month 2013
It is May again; time to promote Ehlers Danlos Syndrome awareness here, there and everywhere. It doesn’t take long of living with Ehlers Danlos Syndrome to realize that it is a poorly understood,...
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Thoughts on grieving loss in chronic illness
I have been working on my book about living with chronic illness and am back to making progress after taking a bit of a break. I would like some input from you, if you are willing and have it to give....
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Invisible Illness Awareness Week
Once again, it is time to shine awareness on living with Invisible Illness. Invisible Illness Awareness Week is September 9 – 15 this year. So many people live with conditions that are invisible to...
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Seeing the Unseen
So many medical conditions are invisible to the normal onlooker – EDS, RSD, POTS, Gastroparesis are just a few that my daughter lives with. It is not easy to live with so many challenges that affect...
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30 Things….
In honor of Invisible Illness Awareness Week, I have asked my daughter to do another guest post. She has answered 30 questions about EDS to bring awareness about her medical condition and I am posting...
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Job goes to the Theatre
Also known as: Em Has Come a Long Way in 4 Years 4 years ago, Em had badly dislocated her knee. We were waiting for an MRI, Physical Therapy and an explanation, still blissfully unaware that her life...
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Hanging in there…and having fun doing so
We have been busy, busy, busy with rehearsals for Sound of Music, with little time for anything else (like blog posts!). We finally are able to rehearse on the stage, so it is all becoming real and...
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The Assertive Method
In my post, Diamox Pointers, I refer to using the ‘Assertive Method’ to help you get the treatment you want to try but didn’t give much information at all about it – just a vague, unhelpful...
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Please Take This Poll
As I mentioned in my previous post, my daughter and I are writing a faith based book that we are hoping to have published. This book focuses on mostly the emotional aspects of living with chronic...
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Need your help again…
You may remember me talking about a project Emily and I are working on – we are writing a book and hoping to get it published. I had sort of intended to have it ready and submitted a year ago but,...
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Waiting for answers
We got Em into the ortho on Thursday. Well, she saw the PA but it is the PA of the ortho we want and like and we like the PA as well, so I was happy. My husband has a good handle on which doctors are...
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Silver Linings…
Knee Update Em had her MRI on Tuesday – we saw the doctor on Wednesday and got good news… the MRI showed that nothing is torn, so no surgery. He thinks the pop she heard was her patella being...
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