Sunshine Journal

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 and my...

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...