I am back!!!

What a crazy two years I have had. I had MALS surgery finally in 2022 and have been learning how to live life again, being married! I still gush over the fact I am married. It is the best feeling I have ever experienced. He saved my life. It was his love that led me to being able to go through with MALS surgery and heal from a lifetime of pain. That being said, I am glad to be back on my blog writing again and sharing my life with all of you.

I decided to start my blog again to share my journey with MALS life 2.0. It is a horrid disease and I thought I would start by sharing my story and showing others what I went through my entire life. I have helped so many others and am now an Admin in a MALS group helping other people. My surgeon is here locally in Peoria, Arizona and he has definitely been a godsend. He saved my life. He continues to monitor me and I see him at least two or three times a year for testing and checkups for other illnesses I do battle. We will discuss more of this through my blogs. I am blessed that I have a surgeon here in Arizona compared to the surgeon in Connecticut who I did not bond well with.

I will share my surgeon search and how I found Dr. Brian Prebil of Center for Minimally Invasive Surgery on Peoria, Arizona.

So here I sit, two years ahead of where I left off. The Married post is my favorite one of all. I look back on all my blogs and where I started and fighting for a diagnosis and being told I had so many things wrong with my body, but no answer to why I was in so much pain eating and drinking. The persistent nausea in the morning I had battled my whole life, from since i Can remember, always made it so I could not be productive in the morning. I would throw up or be nauseous all morning from the time I woke up until later in the afternoon. It lasted my whole life until I was 38. I had a stockpile of zophran on hand at all times in various locations so I always had access to it. I lvied on zophran.

I spent countless hours in hospitals from the age of 18 until I was 38 for pain and nausea in the abdnominal area. It was always diagnosed as different things with no real answer as to why I had such horrid abdnominal pain. Over the years I developed endometriosis and it was always told to me that it was the pain of endo that I was feeling. I thought I just had to endure. I lived my life with pain and nausea, starvation and binge eating to survive. I lost weight, I gained weight. I never was consistent. I was either too thin or too big. Then 2016 hit and the pain became unbearable. As I got older the pain just got worse. The disease in me started to progress and make me sicker. I was slowly unable to function from 2016-2022. I starved losing nearly 100 pounds I had wasted away. The worst part of it was that I got compliments on how great I looked. It messed with my mind. I did look good but I was weak, sick and in pain. I barely was able to eat and lived on marijuana to try and eat and stay pain free. In 2018 I was finally diagnosed as having Median Acruament Ligament Syndrome. A condition that is very rare, affecting a very small amount of people.

MALS as it is known by, is a rare condition that causes pain in the abdominal and chest area. It is a type of vascular compression that occurs when a ligament in the lower part of your chest (median arcuate) sits lower than normal and presses against the main blood vessel that supplies blood to the stomach, liver and other organs. There is also another form known as Neurogenic Mals, and this was the kind of MALS I had. The entire nerve plexus of my celiac plexus region was bad. It needed to be cut out so the nerves could regenerate and grow back healthy. My MALS was triggered by eating food and drinking anything. The nerves would go crazy causing the pain and vomiting and nausea. I was mind blown when I was diagnosed.

It took six years and 50 celiac plexus blocks to diagnose me. My pain doctor was the one who stumbled upon my rare problem. I had mentioned to him having this pain and it getting worse and worse in the stomach region. He told me we should try a celiac plexus block. Fifty of them later, I was happy and gaining weight. I was able to eat and drink and with the help of marijuana I was getting an appetite back. It was not all roses though. The pain persisted to get worse and surgery was the next option.

I started the process to see the head surgeon in Connecticut who knows about MALS and trains Doctors around the world when I learned of a surgeon in Arizona. He is forty five minutes from my house instead of across country! I made a consult and felt comfortable with him upon our first appointment. He was straight to the point and I agreed surgery was needed. However, he did surgery with a robot and laparoscopy. The other surgeon would have had to cut me halfway open. This was a huge win and huge relief for me and my family and my husband.

I underwent MALS surgery in June of 2022. It saved my life. I stayed one night in the hospital and was able to go home so quickly because I could eat with no pain for the first time in my life! I have spent the past two years trying to figure out why there is so much wrong with my body. We still do not have a name to the autoimmune disorder that plagues me, but I am more optimistic these days that I will be ok if we never diagnose me. The pain and nausea are gone!

I documented my journey in my blogs! I hope you enjoy reading them and getting to know more about what I went through. I am excited to share my new life with my readers! Things are looking up and I am doing very well. I do have eleven illnesses all stemming from an undiagnosed autoimmune disorder. That has yet to be diagnosed and I do not care actually. I am doing well with medications, marijuana and exercise including yoga and pilates.

Thank you for reading and supporting my blogs!