Chronic Illness Chronicles

Today marks 3 years since I had life saving and life changing surgery. Leading up to this “surgaversary” date I was filled with different emotions. Some days I was crying tears of frustration, and hurt from all I endured and all that I unnecessarily went through in terms of the medical field. Some days I was crying tears of happiness for how far I have come, how many positive things I have gotten to experience since, and how happy I am to be healing. It was a rollercoaster for several days. It did not help that I had a procedure just 10 days before. But I’ve been working so hard mentally and emotionally and got myself through that. 

The day before Hayley and I were having a conversation and I was checking in on how she was feeling about everything because this was something she went through too just from a different perspective. She was experiencing similar feelings as I was, very up and down and trying not to feel guilty for feeling sad emotions. I said to her that 3 years from an outsider’s perspective might look like a long time. It might seem like it’s so far in the past. But to us and to my parents and those who were close to me during that time and who have seen the healing process, they know that 3 years is like yesterday. I explained to her that recently to help my own guilt/shame spiral I have been reminding myself how MALS surgery is widely known as Life 2.0. And there’s a reason for that. But as I was saying, to help myself I have been talking about the phrase “Life 2.0” literally. I told Hayley that I have been thinking of the past 3 years as if I literally just started my life. Year 1 was all about relearning the most basic tasks, walking, talking, breathing, eating, gaining independence, etc. Year 2 was a lot of emotional healing so for the sake of this analogy, a lot of tantrums lol. But really they were panic attacks and anxiety attacks and a lot of dissociation. Year 2 was the most emotionally raw year for me. Year 3 I am having fewer panic attacks and able to communicate and better understand what I am feeling and further heal from the trauma but in a different way than year 2. When I broke it down like that to her I could see the guilt/shame lift from her face and shoulders. 

For those who do not know or remember why MALS is referred to as Life 2.0 here is my understanding of it. The symptoms I experienced and the way I experienced MALS brought me very close to the end of life. I was severely malnourished, my organs were full of edema and starting to fail, one organ did fail and I later needed that one removed. I could not breathe, my oxygen levels were very low. My skin was gray and my lips were purple. I was in constant extreme abdominal pain to the point where if my shirt touched my abdomen it severely increased the pain. There are many more symptoms I had that I can list but I’m not going to. The point is it was very bad. Not only was I extremely ill but I had gone through 10+ years of medical gaslighting, invasive medical testing, misdiagnosis, incorrect treatment options, and I was running out of hope to ever find an answer to what was wrong with me. The surgery I had was major lifting and repositioning of my diaphragm that was compressing the median arcuate ligament, several of my abdominal organs, and my intestines. For my entire life, I was born this way. I also had damaged and dead nerves removed, as well as damaged and dead tissue removed. It was major. All of this points to the term Life 2.0. A newfound hope, an ability to eat and breathe, and new space for my organs to be and learn how to work properly. A chance to live pain free.

I recently read a post from another MALS patient that explained why healing from MALS can take so long. For some it may only take 1 year, others 2 or more. It all depends on your body, the progression of the condition, and how your body reacts to the surgery. In this post by the facebook group ‘Uncompressed: Seanna’s Journey to Life 2.0’  she discussed how nMALs, which is what I had, is different from MALS. Neurogenic MALS also involves the celiac plexus which is the largest nerve network in your abdomen. This nerve network has several jobs including regulation of gastric movement, pain signaling, digestive coordination, and gut motility across almost every organ in the upper digestive system. A quote from this post that has stuck with me and validated me is as follows “The surgery removes the compression. It does not instantly undo years of ischemia (when blood flow, oxygen, and nutrients are restricted from a specific part of the body), nerve injury, sensitisation, and malnutrition. The body needs time to remember how to work again. That is not failure. That is biology”(Uncompressed: Senna’s Journey to Life 2.0). The post goes on to explain that those with other existing conditions are further impacted by this surgery and healing process because of the biology of those conditions, those of which I have. 

When I read this post I was about 2 years and 9 months post op. I did not reach the point where I felt like I could start eating more food until about 2 ½ years post op. That is being generous. In  September 2025 I was getting my 27 month old nephew breakfast and I sat down to eat as well. Let’s just say he was eating more than I was. This was not by choice I have been fighting so hard to eat enough to get my systems working, to heal the parts of my body that were impacted by malnutrition for example, my brain health (memory, anxiety, brain fog), my hormones (i lost my period for over a year), my blood sugar, my muscles, the list goes on. I knew I needed to try my best to nourish my body. That being said this post was so validating because that was something I was still struggling with and it explained it all for me why I was still struggling. That it wasn’t a personal failure and simply my body’s biology. 

At this point in time I am still dealing with pretty severe gastrointestinal issues. There are weeks at a time where I can not eat enough and if and when I do eat it goes right though me and I am not retaining nutrients. I am in the process of working with several doctors to see if there is a root cause or if this is from residual damage from MALs and malnutrition. I work with a dietitian whom I trust with my life. I have a new GI doctor who is empathetic, a first for me! And I am getting in with another EDS related doctor my dietitian referred me to. I also started seeing an EDS rheumatologist who got me into the best PT program which was life changing for my EDS symptoms and pain. If you’re in the Boston area and need a PT ask me and I will tell you who you should see, especially if you have EDS. 

Throughout the last year I have also continued to work with my therapist on healing mentally and emotionally. This week I am able to restart EMDR therapy to further help heal from my trauma. For those that don’t know, the years I was starting to get very sick were some of the most traumatic years of my life not just from the health stuff. There were family things happening, and other traumatic events that happened to me. So while I am healing from MALS I am also healing from all I endured in those years leading up and during. I feel like I am finally getting to a better place with that but I know there is for sure more work to be done. Healing is not a linear process and I know that being 100% healed is an unrealistic expectation. These events, especially the medical piece, have fundamentally changed parts of me. It has also allowed me to reconnect with parts of me that I thought may have been gone but luckily they are not. 

Although I am still dealing with physical symptoms GI, POTS, MCAS, hEDS I do feel the best I have in years. I am walking almost daily, doing PT, lightly exercising on the days I feel I can. I can feel healing happening although there are still some things to figure out. I am hopeful. I tell myself every day that I will not suffer like that again and I am determined to live that truth. I have learned to trust my body when it is telling me to rest, or when it is telling me to move. I am listening to signals that I used to ignore for the sake of what society expected of me. I have projects I am working on and plans for what I want to do when the time comes. I am planning a wedding that is just a little less than 4 months away! I am working on healing my relationship with food. I enjoy cooking and baking. I am determined to create the best gluten free dairy free nut free meals possible! I spend a lot of time with my nephew and help him grow and learn which I am forever thankful for. I am coaching a team and I am back to giving private lessons. I am beyond grateful to be where I am and I am confident I will continue to heal in a positive way. There are good things happening to me and around me and so much to look forward to. I am grateful to be experiencing these exciting times of my life and my friends and loved ones. These medical conditions may be a part of my life but they do not define my life or who I am as a person.  I am so grateful for the support system I have. I could not do it without them. Mostly I am proud of myself for how I have fought, learned, changed, and continue to grow and heal to become the best version of me I can be. Heres to 3 years of Life 2.0!

source: https://www.facebook.com/profile.php?id=61558130169321