Personal message

I was asked by my dearest colleagues to write a short story about our current situation and the journey so far.

Mario asked me to marry him at the young age of 22. We got married at age 23 in December 2012. Five years into marriage we decided to start a family as we always had a dream of having children of our own.

The road with our first pregnancy was difficult and long, but finally we were blessed with a pregnancy, a healthy baby boy. Although we had very traumatic birth experience where I almost lost my life, we had our son, Sion.

One day Sion came to us and said that he really wants a baby brother or sister. We knew I had complications after his birth and was extremely scared that history would repeat itself. But to see how lonely our boy was, had convinced us to give pregnancy another shot.

After months of doctor’s appointment and infertility issues we lost two angel babies. We were broken! Our Dr ultimately gave us two options, continue with fertility treatments, surgery, little changes of a full-term pregnancy, intense pain due to endometriosis or full hysterectomy which will help with my pain and quality of life.

We had to choose my health over a small chance of having more children as Mario is also a type 1 diabetic and we needed to be healthy for our son. I had an emergency hysterectomy at age of 30. This was an extremely low point in our lives and my health ironically took a negative turn since then.

A year later I was hospitalized and diagnosed with Vasculitis. This is an extremely rare auto immune disease-causing inflammation in all blood vessels in the body. My skin and kidneys where highly affected. Doctors also found vasculitis in my brain arteries which is extremely dangerous as it can lead to strokes.

I had a book full of prescribed medications, regular doctors’ appointments, and blood tests. However, I never really felt healthy. Living with chronic pain and sickness can be so misleading, as it begins to feel normal to always have pain.

With my health decreasing every day, Mario’s stress increased, leading to problems with his diabetes. He had an extremely stressful work environment and so much so that we had to make a choice for him to leave his position after a hospitalization due to stress complications on his diabetes. We could not risk any further complications on his health for the sake of our son.

This came with new challenges and financial burdens. We had to cut down and downscale completely, but always, always held on to the hope that things will get better.

Last year, after a dissociative seizure (resembling epilepsy) and complete paralysis, I was hospitalized again. This time to find out that I not only have vasculitis but FND, Fibromyalgia, Major Depression Disorder, Anxiety Disorder and PTSD as well.

Functional neurological disorder (FND), previously known as conversion disorder, is a condition where patients experience neurological symptoms, such as weakness, tremors, or sensory disturbances, these symptoms are believed to be caused by disruptions in how the brain functions.

Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, sleep disturbances, and tenderness in localized areas known as tender points.

We are left with more medical expenses that we can ever imagine and struggling to keep our heads above water, with no life vest in sight.

Mario is currently in hospital with diabetic ketoacidosis, life threatening. Diabetic ketoacidosis (DKA) is a serious complication of diabetes that occurs when the body produces high levels of blood acids called ketones. It typically develops in people with type 1 diabetes.

I’m all alone with chronic pain and daily flair ups, trying to keep things together. Trying to stay strong and positive for our son, but it’s so, so difficult when you feel like you are dying every day.

Our son is struggling to understand everything and my heart breaks for him daily.

We need a rainbow, no matter how small, we just need some hope.

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