I had the opportunity to reconnect with so many old friends this past weekend. I am continually amazed at the ways little moments in sad circumstances can be nourishing to your soul.
I love to learn people’s stories. We are all so different and so very alike.
As is the standard when I see someone who I haven’t been around for a while- I got a lot of questions about my health (mostly about my neck brace). These interactions were far more pleasant than the typical questions I get in the Aldi parking lot from complete strangers as they were followed by “Where are you living now?” and “how do you spend your time?” and were from people who genuinely care to know the answers to those questions. I don’t always know how to answer well in the moment. It doesn’t feel like I do or accomplish much at all. My health is all encompassing. This body is a full time maintenance job (tools not included).
How is my health? In a lot of ways I am doing so much better than I was a year ago. My immune system is stronger and my digestive system is doing a better job of functioning and taking in nutrients. I know now that some nutrients I can’t get on my own and I need a lot of supplemental help.
My head is another story. We scheduled surgery at the end of the month to create a new passageway in my brain for cerebrospinal fluid to flow through in the hope of relieving some of the pressure surrounding my brain. I have Aqueductal Stenosis. The Aqueduct of Silvius (the darker grey line in the red circle) is too narrow in my brain, restricting the flow of spinal fluid. The simplest way to alleviate pressure around my brain is to poke a hole in the vicinity of the green circle. This is called an endoscopic third ventriculostomy. https://youtu.be/kQjY-hT8WSE (mostly eww-less version of the surgery).
So, life right now for me is mostly focused on getting ready for this- which is really step one on a list of things that need to be evaluated and taken care of before we can progress in treating my craniocervical instability.
I also homeschool our oldest kid and this week is our first review. It has been a busy month so far!
My life consists of taking care of my kids, doctors appointments (we generally have between 1 and 3 medical appointments every week), and research.
Ehlers Danlos Syndrome is really poorly known and there is a lot of misinformation about it in the medical community. I need to be an expert to direct my own care and the care for my kids. Right now, I am researching and reading books about nutrition, histamine intolerance and the American agricultural system. I need to learn in detail how to navigate which foods are best for these bodies that don’t like to digest things properly, and the best ways the prepare them. We have the added difficulty of being prone to allergic reactions and anaphylaxis which can be triggered by foods we aren’t even allergic to due to some overly excitable immune cells (mast call activation syndrome).
Not a baby in there- that’s a localized allergic reaction in my intestines 😖
I am learning a lot right now about musculoskeletal structure and exercise protocols that focus on building muscle but maintain a low enough intensity that my head and neck are not aggravated. If I don’t maintain strong muscles my joints dislocate even while within a normal range of motion. This requires 45-90 minutes of exercise/physical therapy a day- but the wrong movement or the right movements with the wrong amount of resistance can bring about increased neurological and cardiac symptoms for days.
I spend a decent amount of my time helping other people like me find doctors who can help them. I work to educate doctors I come into contact with about Ehlers Danlos Syndrome, it’s new diagnostic criteria, and related conditions. I hope that the next person who comes through their door with EDS doesn’t have to wait the 20+ years for diagnosis that I did.
My life has changed a lot but I still daydream of being on the stage, sometimes my shower turns into the set of Hamilton, Title of Show, or Waitress. I still snort when I laugh really hard. I am probably not allowed to fight during card games anymore but I am not above playing dirty. I still like to bake cakes and I believe in being the fierce kind of friend that will drive 6+ hours to give you a hug because the unknown can be really scary .
I am not sorry for the changes to my life and body or for the ways that I am different, and you shouldn’t be either. This has always been a part of me- the biggest difference that I notice in my life now is that everyone else can see what I’ve been feeling all along, which gives me the space and help I need to feel and function more holistically. When I need to sit or lay down I can do that without being seen as lazy. For the most part, unrealistic expectations have disappeared.
I love this body that lets me experience this is beautiful world and the people in it. I love my life, even with its less glamorous days.
It’s such a good feeling
To know you’re alive
It’s such a happy feeling
You’re growing inside
And when you wake up ready to say
“I think I’ll make a snappy new day”
It’s such a good feeling
A very good feeling
The feeling you know
That I’ll be back
When the day is new.
And I’ll have more ideas for you.
And you’ll have things you’ll want to talk about