ramblings

One would think it would be easier to write while on leave. Except, when it's a medical leave I guess it's not as simple as I thought. I struggled to write in the months before surgery and it hasn't gotten any better since. Most often it's because my head isn't clear or there just isn't the energy. And if I can get those two things to coincide with a window of time, I usually need to prioritize it on something else.

About two weeks ago I had someone reach out to me via FB messenger that started with, "I came across your blog and it really spoke to me." I was so elated! I found Ben and told him straightaway. I obviously don't want anyone to share my suffering. But that's not realistic, so I was happy my words found someone who needed it. Shortly after that I had someone from my hometown reach out who knew someone having health issues and thought of me. She thought I might be of help because our stories sounded similar. I can't even put into words what going through all of this is like. But I'm so thankful to all of you reading about my journey and taking the time to learn about these vascular compressions, Ehlers-Danlos Syndrome, or anything else I've written about in the last seven years. With continued awareness and more voices, we can all help more people! Several of these health issues are currently "rare", but likely just rarely diagnosed. So I just wanted to say thank you to those who share and reach out. Please don't hesitate, I'm happy to share resources or chat with anyone.

My mind has been swimming of thoughts and stories to write. I know I should focus on a topic at a time, but I have serious squirrel brain. I could write about my MALS surgery, time in the hospital, and the days that followed. What it’s like recovering or how I felt stuck at times when everyone else kept moving forward. Sometimes even taking a new turn that I wasn’t able to follow. I could write about parenting, its trials and tribulations. Children can be the cause of your stress but also the joy that keeps you going. I could talk about the symptoms I’m left with and how functioning often feels like a full-time job in itself. I could share my random fantasies of going out with friends, where there’d be dancing or singing and definitely lots of laughing. I could share about the people I miss and how sometimes it’s felt so deeply it hurts. Some of those people are very much alive and others no longer here. We could talk about the holidays, the moments of fun and the moments of sadness. I could share my experience with getting a stent placed and the nurse I had named Joe. I could share Ben and I’s banter about our scars and how it feels good to make light of them sometimes. I could share about our house project and the progress that’s been made. We are getting closer to a huge turning point and there’s light at the end of the tunnel! I could share about my dreams and aspirations for the future or maybe even just the steps of getting back to work. I’m sure if I asked what you’d like to read about some of you would say you’d read all of it. Some of you occasionally tune in if it catches your eye or pops in your feed. And some of you are here specifically for medical experiences because you want to find a story to relate to or you’re going into a procedure and want to know what to expect. Likely, I’ll ask friends to vote on my next topic so I have a place to start. Because if it were left to me I’d start in one place then bounce all over the place leaving you with a 5 page essay.

I will, however, take a short moment to talk about all of the support we’ve received and how we wouldn’t have survived without it. I feel like I need to send individual personalized thank you’s, but I know I’ll never accomplish it. Just know that I wish I could. Each and every gesture means so much to me and my family. The relief I feel when there’s another jar of soup in the freezer I can heat up… or when someone asks one of the kids to come over and hang… or the card that shows up in the mail that makes me giggle or has me shedding tears… or the hug that shows up at my doorstep with an extra coffee in hand… or that phone call I get where someone shares their day with me… or that text checking in… or a random snap about apple juice… I could go on and on, sharing enough examples to fill a page. Thank you for all of it and please don’t stop. Along the way I’ve tried my best to show up for others too. I know I’ve fallen short many times, but I also have ridiculous standards for myself. Thankfully I’ve had people remind me it’s a season for letting people show up for me. I’ll never be able to express my gratitude enough! 

<3 Ash

If anyone would like a quick recap, I tried to capture it HERE.