vascular compressions: a day in the life

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 A month or so ago, Theodore was hanging out with me in the living room. And out of nowhere he asked why I had to have this rare health issue. Wanted to know how I got it and how common it is. I explained that I was just born this way. Then we searched to see what the internet said for how common it is. It said about 2 out of 100,000 people. This is referring to median arcuate ligament syndrome, which is when there is compression of the celiac artery and you have symptoms because of it. They think anywhere from 10-25% of people have the compression without symptoms. After I told him about the 2 out of 100,000 he immediately said, “So you could be the ONLY person in Mankato who has this!?” I had never thought about it that way, but he’s right, I could be. Though as we’ve witnessed with my journey, it’s ridiculously challenging to rule out all the things and get a diagnosis. So how many people struggle with MALS and have no idea?! Theodore was just so sincere in all his questions. He t

rise up.

Several months ago I was on my drive home from an appointment in the Cities and the song "Rise Up" by Andra Day came on. The song had been on my playlist already for quite some time, but I never really absorbed what she was saying until that day. It spoke to me in so many ways. It is me.

You're broken down and tired
Of living life on a merry-go-round
And you can't find the fighter
But I see it in you so we gonna walk it out
Move mountains
We gonna walk it out
And move mountains

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousand times again
For you
For you
For you
For you

When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
Move mountains
Bring it to its feet
Move mountains
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
For you
For you
For you
For you

All we need all we need is hope
And for that we have each other
And for that we have each other
And we will rise
We will rise
We'll rise
We'll rise

I'll rise up
Rise like the day
I'll rise up
In spite of the ache
I will rise a thousand times again
And we'll rise up
High like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousand times again
For you
For you
For you
For you


Whenever I need a reminder I just play this song. And if you're like me you'll also belt it out at the top of your lungs in the car. I feel like there may be some other warriors out there who need this too.

When I started physical therapy the end of summer 2018 I was a hot mess. I honestly wasn't sure it was even worth trying. I was in so much pain everywhere that doing exercises with someone didn't seem like the best route. Someone had reached out to me and recommended Colin. She really felt he could help as he had experience working with chronic pain patients using a different technique. The little voice in my head wore me down and I called him. I should note that in many cases it's not actually wanting to avoid trying something new. It's more about the time, money, and energy it takes to actually pursue the avenues. And in this case, the extra drive time as well. But I heard him out and grasped one thing from our phone conversation, he seemed compassionate. If I was going to put myself through more appointments and allow myself to be vulnerable with another person, this was a trait they needed to possess. I honestly don't remember much from my first appointment, but let's be real, I probably cried. One thing I do remember from those early appointments is that he asked me what my goal was. And my response, "to dance again". There were other goals obviously, but ultimately, I knew if I was dancing that all would be right in the world. As time went on he continued to check in and ask me what my goal was. At the beginning I still said my goal was to dance. At some point I felt defeated enough that I wasn't certain I'd get there again, so I changed my answer to "go for a walk". I really did miss going for walks. I felt like I had no outlet. My go-to over the years to deal with anything life threw at me was exercise and when I couldn't do that I was a bit lost. Eventually I turned to reading to cope. The point of this story though, is that on September 11, 2019 I went to a dance class and it felt so good! And after I finished that class the first person I texted was Colin. The week prior I had my last appointment with him. The finality of it had more to do with schedules and the long distance (now that he's in Chanhassen) than anything. Though at my last appointment I think we were both a little shocked at how much my body had changed and progressed in the time since my previous appointment. So going to that dance class really felt like I had truly crossed the finish line in that journey. 

At some point prior to that dance class I was entertaining the kids in the backyard by dancing my heart out to "Run the World (Girls)" by Beyonce. It was all in good fun to make them laugh. And laugh they did. There's something special about that look they give you in those moments. It definitely fills your bucket. When they are at these ages, you are their world. I mean Theodore might yell at me five minutes later, but in that one moment you just know you are where you're meant to be in this life. I can't remember when exactly, it was maybe a few weeks or even a month later, Ben told me that the night he saw me dance in our backyard he knew I was me again. I know what it feels like to lose myself. But I don't know what it feels like to lose your spouse while they are still physically present. There are likely many adjectives one could use to describe it, but ultimately I bet it's painful. There were very few moments in these last few years where Ben let me see that pain. And I know it's because he didn't want to add to my own. I had no way of truly knowing, but I knew in my heart that I wasn't going to die. I know that seems dramatic and harsh, but I know that it had crossed his mind. And while I was unable to work and function most days I promised him I wasn't going to.  

I truly feel like I've been given a second chance at life. Maybe it sounds ridiculous, but I don't care. This new life is going to be a romantic comedy more than a drama. Or if it must I will allow it to be a RomCoMa, Romantic Comedy Drama. So bring your funnies if you want to star a role! I think somedays Ben doesn't know what to do with me because I bring my weird to a whole new level. His number one response is, "oh love". I envision there are probably eye rolls happening too. I tell myself he secretly loves how ridiculous I am.

Three months ago I started a new job. I decided my new life needed a change in career. It was terrifying to take the leap, but I did it and I'm so thankful I did. I think the new challenge and environment gave me another spark that I needed. If I'm being honest, the hardest part about it was taking that step down in role. And I'm sharing this because I think there are people who can relate and not many talk about it. I once saw myself as a successful professional who managed people and product. When I went back to work that role changed. It wasn't my decision, but it was what was going to be best for me and the company. It also allowed me to transition back into the world of working at a pace I needed. When I decided to leave I knew I needed something completely different. Since my degree is in Graphics Production I felt a bit limited. I had a ton of experience, but it's hard to translate that in a glance on a sheet of paper. I didn't want to design anymore as my career, so I searched the world of Administration. I honed in on this because I like to help people. That was one of my favorite parts of being a manager, being supportive. But there was a part of me that still felt like I failed. As time goes on I don't dwell on it as much. Ultimately I remind myself that it doesn't matter what I'm doing as long as I'm happy, healthy, and still supporting my family. And I'm doing just that. Sometimes I feel like Anne Hathaway in Devil Wears Prada, except all of my co-workers are extremely pleasant. I actually mean this in a good way. Because after all, I'm starring in a RomCom, remember? So one hour I'm Anne Hathaway and the next I'm processing taxes. I had no idea that using a mail machine would bring me so much joy. This is no joke. I told you I'm weird. Processing taxes really suits my type A personality. There is a process, a task to complete, and a box to check when you're done. It's so satisfying. People will message me and ask me to do things for them and I get to respond with, "Absolutely!". And now I've made their day better (this is what I tell myself, so don't burst my bubble). And sometimes you make bets with co-workers on how late the DoorDash driver is going to be for their lunch delivery or get mints thrown at you just for fun or swear at said mail machine because it just ate the envelope. Basically my new work family is just as fantastic as the previous one. It also helps that my kids think I work in the coolest building ever. Though Theodore informed me that 7 floors in a building isn't enough and he wants to build one with 8. It's fascinating listening to the ramblings of thoughts in his head. 

My new life isn't without bumps in the road though. But there's always a twist in the Romantic Comedy where things go awry before getting back on track to the ultimate happy ever after. A few weeks ago some intense pain was creeping it's way back again. A few days I was certain someone ran me over or at least threw a few punches my way. I pushed it off because life has been busy. Work got busier, I was working full-time again, the kids started school, weekends had plans, weather changed, and Ben's photography business picked up. I mean it was only a few short months prior where I was working a half-day and sleeping all afternoon before dragging myself to go pick up the kids at the end of their days. I know I have high expectations, but there's a limit and healing doesn't happen overnight. As the days went on I started noticing more and more symptoms creep back in and I was feeling much worse. I started having more issues with food again. You will be happy to know that I have gained back 10 pounds. Never thought in this lifetime I'd ever say such a thing. I honestly got to the point where I thought I better slow my roll with the eating. I never got too crazy as it was still mostly healthy, but clearly it was enough to add some pounds. Violet just asked me recently if I had a baby in my belly. Isn't she sweet? ha! I actually had started doing a mini-workout each day in hopes of gaining some muscle back. It was even starting to work! I finally didn't feel like such a weakling. Anyhow, food started to not sit well again. I theorized that maybe adding some dairy back in was causing all the issues. So I took it back out, but it didn't help. I can't even fully describe how it feels to wake up in the morning and feel like you were transported back to a year ago. Awful, defeated, sad, angry... those are a few words that come to mind. When I first started at Abdo I took the stairs every day. And everyday I felt thankful that I could climb those stairs. I got to the top and I didn't feel like death. I still had a smile on my face and I felt like I conquered the world. My legs were no longer in constant pain. It didn't feel like a feat to walk a block. I was climbing 5 flights of stairs! Seriously! But I've been taking the stairs less and less these last few weeks. I took them the other day and it took me a half hour to recover my breathing, heart rate, and stop shaking. I've had many a days where I feel like I have a fever. I ache and rotate between chills and sweat. I've been wracking my brain as to what it could possibly be. Then the other day I took a look at our humidity meter in our bathroom and noticed how high it was. And then I looked at the ceiling closer. Mold. If this isn't a testament to how harmful it can be, I don't know what is. My body is clearly still really sensitive to exposure. But I'm actually really shocked at what it does to me. We have a plan to take further measures to address it. The situation still sucks though. But I got better before and I will do it again. I just hope it's not built up too bad in my system and doesn't take as long to start feeling better. My doctor is on top of it and we are adjusting my supplements as necessary. Besides all the obvious reasons to be devastated about this setback, Ben and I also have a vacation coming up in a few weeks. And I was all set to really kick off my new life with a vacation where I actually got to fully participate in adventure. I will still make the best of it though. And don't think for a second that I've stopped smiling and laughing through this. I've just had to tap into my mind over matter skills a bit more. "I'll rise up and I'll do it a thousand times again!"


Love you all!
Ash


A few shout outs to end this post:
• I've been able to float again! My sister-in-law Ginny has opened a float tank business in New Ulm. She is running a promotion through the end of October, so go check it out! http://www.calmlakefloats.com

• My cousin started a CBD oil business. Everything about it is fantastic. He is incredibly knowledgable and can help answer any questions you have. https://criver.cc/

• To dance your face off, scroll to adult classes. They are drop-in, so you can do what works best for your schedule. https://www.dcsmdance.com/dance-information

• This previous post talks more about mold.
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