Sunshine Journal

April 12, 2026 If you need a quick catch-up you can skim CaringBridge first. Coming Home: Comfort and Reality I have been home almost a week now and it has come with many challenges, but also lots of comfort. I, of course, enjoy being able to sleep in my own bed. But even more than that, being surrounded by my family is the ultimate comfort. Ben's family came for a visit and belated Easter meal the following weekend. Managing Pain and Medication Changes I am still dealing with a lot of pain. When I was in the hospital, I was on a lot of medication and since being out that has been decreased significantly. So I am trying to find a better middle ground through trial and error. There is also a nervous system and mast cell component that has added extra body aches on top of surgical pain along with my digestion working to figuring itself out. Since there is still a lot of adjusting happening and my body isn't real happy with me, I'm still on TPN. Healing Is Not Linear One of ...

Written January 28th, 2026: As we all know, life doesn’t come with a manual. In some ways that’s the beauty of it, but there are definitely situations where I could sure use one. I’ve had to advocate for my health for quite some time. In the beginning I was terrible at it and even now I’m still learning. I’ve never been the loud one, except that time in 2nd grade when I got pulled out of the classroom because I was being distracting. Did I cry my eyes out as the teacher talked to me? Absolutely. And then I likely never did it again. I really did like that teacher. There’s been so many times throughout this journey where I find myself in positions where I just don’t know what to do. Somehow things work themselves out either by someone coming through for me or I figure out a new path. I’ve found myself in that situation once again. I’ve been trying to get extra nutrition for several months and most recently to get a feeding tube placed. Which is not a light order. I feel as though I’m ch...

What’s Happening I’ve been talking quite a bit to my dietician, primary care physician, and a new doctor who is a neurogastroenterologist (specializes in MCAS, dysautonmia, GI, POTS, and EDS). Unfortunately, they are all at different locations/heath systems so I have to coordinate. My instinct is to hide and not share any of this because it’s messy and I’m in the middle of it with no real action yet. But I’m going to try and share some of it. Because as we all know, none of this journey has been straightforward or easy. I’ve been feeling very unwell. And though the surgery did contribute some extra trauma to my body and cause more mast cell activation… it’s not the main culprit. I’ve mentioned a few times now that I’m still dealing with SMAS (duodenum compression). Because of that it’s impacting my whole body. There’s so much at play with makes it hard for me to articulate a good explanation. It creates a continuous bad cycle on the hamster wheel. SMAS puts my body under constant strai...

Prologue (This can be skipped completely if you want to jump to the bits about surgery, just writing for memory sake) The month leading up to the big day was a busy one. Of course, I still thought about surgery. Mostly in terms of 'thank goodness it's almost here'. And a few moments of fear and sadness and worry. September brought the start of school. The week leading up to school was a bit hairy with Theodore's anxiety about starting middle school. He was incredibly excited, but he gets very flustered with the unfamiliar and just assumes he's going to fail. But we got to the open house and his conference. Ben walked his route with him several times until Theodore felt satisfied. Actually, he probably didn't, but Ben needed to get back to work at some point. haha As we suspected, by day two of school he was already loving it! He even admitted after a few days that he does like choir despite the many disagreements we had over whether he should take the class or n...

I so badly wanted to make the title 'new year, new me'. But I couldn't find a way to spin that into truth, so I think partially improved works ;) I've had a lot of people ask how I'm doing. Which is such a great question. One that I struggle to answer actually. Depending on the moment I may share some of the depths of it, but otherwise I'm vague or avoidant.  While some parts have improved, like the MALS, there are several other issues that have not. I knew this going into the MALS surgery, but I secretly hoped it would magically help more things. The downside of abdominal compressions is that body’s anatomy is so interconnected that addressing one compression can shift blood flow and organ positioning, potentially worsening or exposing another compression. It can also disrupt compensatory mechanisms your body relied on before surgery, leading to new issues. Changes in nerve and tissue tension from surgery may aggravate borderline problems, and those with one co...

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 ...

oh hey friends! Let's do a little recap to summarize happenings, as it's a lot to follow. August 2023: started experiencing intense pain after eating and drinking that would have me curled up in a ball for hours at a time - ran numerous tests and came up with nothing. More in-depth timeline . September 2023: my EDS doc suggested looking into MALS & Nutcracker Syndrome - I had Mayo vascular review my CT scan to get an opinion if there were compressions - the radiology report had only noted mild pelvic congestion - Mayo sent a letter stating they could not take me on as a patient at this time - I called and asked why - they said they didn't see any compressions on my scan I put on my research hat and started reading. I was able to get my body calmed down to a tolerable level and just pushed through. Always in pain, but I wasn't crying in a ball anymore at least. I found ways to eat minimally and get by. I also didn't believe Mayo, something wasn't right a...

In the ongoing saga of my body’s quirks, I’ve got another diagnosis to share: May-Thurner Syndrome . If you’ve never heard of it, you’re not alone—it’s another rare one to add to the list. Essentially, it’s a condition where the left iliac vein is compressed by the right iliac artery, which can lead to poor blood flow and all sorts of fun (read: frustrating) symptoms. My vein is 83% compressed, though my body has created collateral veins to help bypass. You'd think this new highway system would be sufficient, but I guess it's not. I discovered I had May-Thurner Syndrome during a venogram I underwent at UW Health in August 2024. Going into my MALS surgery, I knew there was a potential that MTS would also need to be addressed. But I was optimistic, hoping that MALS would alleviate several of my symptoms. As it turns out, MALS was just one piece of a much bigger puzzle. The cramping, pain, fatigue, and dysautonomia have continued to wear me down, even post-surgery. Some days, I fe...