Chronic Illness Chronicles

December is Vascular Compressions awareness month. This is an important month for me. As you know I have MALS which is a vascular compression and am currently recovering from my open abdominal MALS surgery. What most of us don’t realize, is how much power we have by having the internet at our disposal.

I have suffered mostly from GI issues, my entire life. I was frequently visiting my pediatrician to discuss my GI issues. In high school more symptoms arose and I started getting more tests done. I got an mri of my brain, a breathing test, allergy test after allergy test, etc. All of those tests came back inconclusive, or something I was prescribed an antibiotic for and crossed our fingers it worked. In college my symptoms progressed further. I was in the hospital for a week and had my first surgery. After that surgery my health began to rapidly decline. It felt like every time I blinked I had a new food restriction because that “should help”. Once I graduated from college my symptoms again, intensified. From then on I have been seeing specialist after specialist and having test after test. Then came my first 3 diagnosis. Phew! I have my answers I can find a treatment plan that works for me and I will be able to live my life mostly normal… or so I thought.

My symptoms continued to intensify. By 2022 I was waking up vomiting, then it progressed to vomiting several times a day, and waking up in the middle of the night because I had to vomit again. I started seeing a new GI and I waited 8 months for my initial appointment. During those 8 months I got significantly worse. I could not keep food in, I was always bloated, I had severe pain after eating, my GI symptoms worsened, and more. And so began months of tests, months of searching and fighting for answers, months of symptoms intensifying with each inconclusive test.

After begging for help from my doctors, and being dismissed and gaslit constantly by my doctors, I found a doctor that listened. This was my saving grace. I had a REAL chance of surviving. I fought harder than I ever have in my life to get to these appointments. In February 2023, after a lifetime of searching for answers, I received my diagnosis of Median Arcuate Ligament Syndrome. I had answers. I had hope. I had a chance.

Now I just had to make to March 14th to have a celiac plexus block to confirm my diagnosis and determine if surgery will be beneficial for me. My block was a success! Relief for the first time in years, physically and mentally. Then I got my surgery date, May 24th 2023. The next few weeks were the longest weeks of my life. I only continued to get more sick but I had to keep going and fight. I’ve made it this far, I’ve overcome handfuls doctors telling me I’m crazy, telling me there are no answers for me, screaming at me, dismissing me, gaslighting me, letting me suffer. I’ve overcome years of suffering. I became a damn good advocate for myself and others. I could do this.

And I did. I had my surgery and I am healing and doing better than I have been in years. I still have my struggles and symptoms and roadblocks but I am not in 24/7 excruciating pain, I can eat without pain, I can breathe, I can walk, there are so many things I can do that I never thought Id be able to do again.

The answers were there the entire time. Vascular compressions are not new conditions. So why did it take almost 20 years of symptoms?

Vascular compressions are real, debilitating, life threatening. These conditions need more awareness. No one should have to spend the majority of their life looking for answers to their symptoms. No one should have to beg their doctor for help, to not to give up on them.

I don’t post for attention or for you to feel bad for me or for you to tell me I’m so strong. I know I’m strong. I know what I went through is unimaginable to most of you. I post for awareness. I post for the next person begging for answers, begging for hope, praying to every possible higher being for help to keep you alive, for strength to keep going. I post for the people so beaten down by doctors and ready to give up and accept their life for what it is/was. I post for people like me.

I found out about vascular compressions through social media. I found my dietitian who saved my life through social media. I found the surgeon who saved my life through friends on social media. The power we have to spread awareness about so many things is incredible. You may think a simple repost does not mean anything, but to people like me it means a chance to live past 30. Use your voice you have one for a reason.