The FPIES MCAS Theory

I have a theory that MCAS is actually out of control FPIES, food protein induced enterocolitis syndrome. I also have a theory that FPIES is not as rare as people think. I think it is incredibly common in babies but is misdiagnosed as reflux and milk allergy. FPIES is known for causing projectile vomiting when you begin solids at six months old. It isn’t the normal gag reflux since the vomiting is usually between 1-4 hours after eating. My son would vomit at an hour almost to the minute every time if he didn’t nap. I believe that sleep slows down digestion and can mess with the times a little.

I’m not a scientist but from research I will say the microbiome is involved. FPIES and MCAS are autoimmune diseases. From what I’ve gathered an important factor is upping the good bacteria in the baby’s gut. Some things you can do to do this are spending more time in nature, time around animals and breastfeeding. I will say the FPIES can be an unpredictable rollercoaster. Not every person will react the same. I’ve had periods in my life where I felt cured and I had periods where I am very stressed and sick. I do think though that my children and I may have MCAS as well, mast cell activation syndrome. Sometimes I eat a trigger food and my body reacts strangely. Chills and lethargy instead of vomiting. My daughter has very sensitive skin and we all have regular allergies. I once heard that 25% of kids with FPIES have regular allergies. It is still such a newly discovered disease the research grows every year.

So now you know the facts and theory, I’m now going to tell you about my life. A patient’s and parent’s perspective. I aim to give you hope that things will get better but reality is, if your child has a severe case, you may be in the trenches. I know of kids who are three years old only on formula and three foods. I know of kids who develop kidney disease. Our little autoimmune kids need our help. I like to say our babies have sensitive systems. The will grow big and strong they just need our help. My life is a warning to what happens when you ignore FPIES. When you don’t know what is going on, when you don’t believe your kid’s tummy aches. I truly feel the faster you treat FPIES, which is just avoidance of food they are allergic to, the faster they recover and get over it. I am 28 years old and I still struggle with FPIES sometimes. I know there are other adults who have a random sensitive stomach. There is hope for you too.

PTSD & Lack of Trust

Trust was a big issue growing up. I didn’t trust my parents to go to them with my problems. I don’t know if I ever fully trusted a boyfriend or husband. I know I was private with my husband. I didn’t talk much about my past. I never told him about being raped. I liked my past to stay in the past. I don’t know if it served me. I think it hurt my marriage. I was so repressed. Too many secrets. Right now, my ex husband and I are in talks about maybe getting back together. Maybe we will be together by the time I’m done writing this book, I’ll let you know. To tell you why my marriage ended, well, I should tell you how it began. It ended because of a big fight. A weekend of a fight. I also was talking to Chris again. The combo ended my marriage. In truth, I had been vaguely thinking about it for a long time. Every argument I wondered if we would last.

I trusted Chris with my secrets, but I trusted my husband to take care of me. I was scared Greg would judge me. I didn’t know how to be open with him. Chris was older, more experienced, open with me. He gave me his secrets and I gave him mine. My Greg doesn’t have secrets to give. He is my baby lamb. I have many regrets. I don’t know if I can regret the separation though. Greg and I have grown so much. People have bonded to my kids way more than they would have. They are spending more time with family and having tons of fun at my in laws house. I just don’t know. I wish it could have been different, but I think if Greg and I do get back together, we will be stronger than ever. I’ve grown and so has he.

That is the thing about twin flame. They make you grow the most. They are your mirror. I don’t know if my twin and I are meant to be together. We both love each other but we both love someone else. Even if we managed to have open marriages, I’m sure that our partners would veto each other. Our bond is too great. No matter what happens, I’m glad I had him as a special friend. He told me what we have is sacred. We have given each other great advice. We have supported each other. Maybe I needed him to learn how to be open with my husband. He helped me talk out my trauma. He validated my murderous feelings, even though I won’t ever act on them. He helped me work out my anger. I felt I needed Chris at the time. He gave me a different perspective. I’m a stronger person now. I don’t know what the future hold. I don’t know who I will end up with. I just know that life is a work in progress.

For The Love of Fine Motor Skills

Grade 9 was an interesting year for me, first year of high school. I joined art club and I had my first boyfriend. He was a gifted guitarist, with long black hair and an Iron Maiden shirt. We dated off and on the whole year, but my father did not really approve. My father thought it would be better for me to just learn guitar myself and stay home, boyless. I promptly had two guitar lessons before my father decided that I should learn to take the bus there. I never went back. In reality, it may have been walkable if I had tried to figure it out, but this wasn’t the first activity that died because family didn’t want to drive me somewhere. I did learn a little, mostly playing while on the phone with a guy friend guitarist. Most of my time though, I spent studying science, drawing or on my computer.

In grade 11 shop class I hurt my hand, my left hand. I was using a band saw and accidently cut over a tiny knot. The one side chipped off and within half a second my hand went into the saw. It left what looked like an imprint of a golf ball. They sewed it up tightly and it took a year for me to make a fist again. I never played guitar after that. To this day it still feels weird when I make a fist and I don’t enjoy using my left hand.

My first and only year in university was rough. My mother was constantly calling me freaking out. My father used me being away as an exit sign. My roommates were nice but I was in the hardest program. They didn’t really understand Saturday morning classes.It just wasn’t great. I ended up doing a six week outpatient program through the hospital there and was diagnosed with PTSD from previous trauma. I was put on antidepressants and sleeping pills. Over the next few months I kept feeling worse, and kept complaining to my psychiatrist about it. Every time he upped the dose, ever single time. It was at the point where my dose was increasing every week or two weeks but I wasn’t even going in. I was just going to the gym and going home. I was dieting, losing weight, studying and spending every day alone. In hindsight, I think the meds weren’t a good match for me and were making me sicker. Or they worked well like speed and I was addicted to them. I wasn’t even sure if I was getting sicker, but I knew I was getting a bit fucked up on them.

One day,  I tried to kill myself. I had been suicidal off and on my whole life so this wasn’t so new.  I had a boyfriend when I left for university and he called me to tell me he fucked one of my friends. My first suicide attempt and this one felt very similar. It was sudden. It was impulsive. I wasn’t even that sad. I have no idea. I just know I took the rest of my sleeping pills with some milk, which I’m allergic to. Luckily, I drank enough milk that I threw up some. I can’t honestly say I was that heartbroken over this guy. It was more of 1) I think the drugs were making me high and I wasn’t in my right mind and 2) I was really at the end of my rope with everyone. I had been very let down by everyone and the fact that it was with a friend, a friend that I had slept with myself. It was too twisted. It was cruel.

A couple hours after I hung up on him, he checked up on me. I was fucked up on sleeping pills and he had me rushed to the hospital. I was there basically overnight, sleeping. In the morning I told the doctor I freaked out over a boyfriend, it was stupid, I don’t care anymore, and I regret it. My memory is kind of foggy after that. I have no idea how I got home. I do remember the nurse kept trying to make me leave, saying they needed the bed, but I was so tired I kept falling asleep. The first three months were the worst. I fell down the stairs, a lot. The next psychiatrist I saw thinks I had brain damage. I know that I had PTSD memory issues before, but they seemed worse. My motor skills were ruined. I managed to improve my gross motor skills for the most part before I got home from university. I did get a couple bad bruises falling down the stairs after I got home, but I started dating a body builder, who trained me at the gym, and I got more coordinated.

The thing I didn’t realize, the thing that I find the hardest now, is my fine motor skills are not great. My hands get shaky when I try to do some small things. I was excited to learn ASL until I tried doing the alphabet and was horrified. I’m relearning painting and drawing. Taking a ten year hiatus didn’t help. I bought a new guitar but I know it will be much harder to learn than it was pre-band saw, pre-OD. I have no idea if there is any real life point to all this but it feels cathartic. It feels like I am healing my mind and body.

Sometimes I wonder if I was supposed to go into art instead of science, but then I think of how my son has a rare autoimmune disease. When he was sick I did do a lot of research, and I do feel like I had a good base for understanding what I was reading. Maybe everything happens for a reason. Maybe this is how everything was suppose to end up. Me, starting from scratch, starting over.