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Category: Ehlers Danos

A Ride with Security

By Shannon Posted on March 24, 2019 Posted in Ehlers Danos, Medical journey, P.O.T.S. Dysautonomia, RV family life No Comments

Our day started out pretty typical.  I taught a couple of classes in the morning. Then I tried to get a little sleep, but that didn’t work so I got back up and drove us to Shaynen’s doctor appointment.  The …

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New GI

By Shannon Posted on February 23, 2019 Posted in Awareness, Ehlers Danos, Medical journey, P.O.T.S. Dysautonomia No Comments

We have been working to find a good doctor for each of the boys for each body system they need a specialist in. I had a very strong feeling I would like his office just from the call to schedule …

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Hate is a strong word

By Shannon Posted on February 7, 2019 Posted in Anxiety, Awareness, Ehlers Danos, P.O.T.S. Dysautonomia, Tourettes, Uncategorized No Comments

Hate is a strong word: I hate being a parent to a chronically ill child. I hate it because it often makes me feel helpless when I can’t help them feel better. I hate watching my son throw up multiple …

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Ouch is an understatement

By Shannon Posted on December 18, 2018 Posted in Ehlers Danos 192 Comments

Sorry I haven’t posted for a number of days. I usually try to update about every other day at least. Unfortunately last Tuesday I fell. We were getting ready to decorate for Christmas and there was a lid for my …

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New doctors

By Shannon Posted on December 6, 2018 Posted in Anxiety, Ehlers Danos, P.O.T.S. Dysautonomia 6 Comments

Today was spent establishing new doctors for myself and Shaynenn. We will establish Rethan with the doctor soon as well but they did not have an appointment right away. I am so thankful for people on Facebook groups with the …

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Hitchcock, Lewis and Clark

By Shannon Posted on November 16, 2018 Posted in Awareness, Ehlers Danos, P.O.T.S. Dysautonomia, RV family life, RV life No Comments

You started her day today at the Hitchcock Nature Center. Its a very nice Nature Center. All of the kids really loved playing at the nail thing where they have a whole bunch of plastic nails and you put your …

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Iowa State Capitol building

By Shannon Posted on November 13, 2018 Posted in Awareness, Ehlers Danos, P.O.T.S. Dysautonomia, State Capitals No Comments

Today we joined friends to go check out the Iowa State Capitol building and Iowa history museum. It was pretty cool although it made for a long day. I was very glad that I decided to take Shayne’s wheelchair in …

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The Spoon Theory is Not Enough

By Shannon Posted on October 17, 2018 Posted in Ehlers Danos, P.O.T.S. Dysautonomia No Comments

The spoon theory has been helpful way to explain how people with chronic conditions have to deal with only having so much energy. We only have so many spoons each day and every thing we do takes a spoon. It’s …

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Why my son has a wheelchair

By Shannon Posted on October 17, 2018 Posted in Awareness, Ehlers Danos, P.O.T.S. Dysautonomia 2 Comments

Most people who see my children and I, wonder why we have a wheelchair in our RV. When I tell them it is for my oldest son, I usually receive a questioning expression since he usually has so much energy …

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