Welcome to My Chronic World

Since a young age, I was easily getting sick. I had days where I would feel so tired, drained. No matter how much sleep I would get, it wouldn’t be enough. There were stages in my life, all I would think about was how to get home and sleep. I thought it was normal, that I only needed some time to rest. Little did I know it was more than that. It started affecting my social life, my work, and my school.

My memory is the worst. I don’t remember much of my youngest years for some reason, but I do remember when my journey on medication began.

My doctor told me it was just my mental health

My primary doctor at the time told me the way I was feeling was just anxiety and depression. He started me on my first antidepressant, Celexa. As time went by, I decided I still wasn’t feeling well, which then I was referred to a psychiatrist in winter 2016. This psychiatrist diagnosed me with anxiety, depression, and attention deficit disorder that lead me to go on short-term sick leave in the spring of 2017.

He started putting me on more medication, which lead to errors and trials of adding more medications on top. At times, increasing different dosages. I still wasn’t feeling well. All I was getting was debilitating side effects like severe weight gain, more fatigue, more pain, eye pains with chronic migraines…It kept getting worse and worse along the way.

I couldn't get out of bed

As a working mother, my routine was waking up early every morning, pick up coffee, and off to work. Earlier than my coworkers! That’s how much I loved my job as a medical secretary. My routine started changing slowly. It was no longer waking up early. It was not being able to get out of bed. I was coming home and straight to bed. I had no energy for my family or for any weekends. I would make excuses to miss gatherings because I just didn't have the energy for the after-effect of going out.

One day, I had to cross the street with a coworker to go get coffee for the staff, and I just couldn’t walk like I used to. I noticed my lower body was becoming weak and stiff. Driving long periods was becoming difficult, as well as sitting at my desk.

Then the pain started

I noticed pains in my low back, the stiffness with shortness of breath that made it harder to move around. I noticed the energy I didn’t have to get dressed or wash my own hair. I noticed all my daily tasks I was doing, where not possible anymore. I was struggling. The weight gain was piling up and I felt stuck in a place I couldn’t get out of. It was a very lonely and dark place.

I finally decided I needed to get to the bottom to find out what was going on with my body. This was my health, my body. I couldn't go on this way.

I changed to a new primary doctor, who put me on sick leave in July 2019 (second sick leave), after getting off all antidepressants, I got really sick with GI issues that lead me to a gastroenterologist. He then did all the necessary tests that showed chronic inflammation. I heard the first words that gave me hope. "It's not all in your head," he said.

He then referred me to a rheumatologist. In a matter of 5 minutes, I was out of the office. He disregarded me. I was discouraged. I was spending all day in bed to the point I was bedridden. I needed answers.

I was getting sick often during that period of time. I lost 2 teeth that year and had an infection in my mouth. I also ended up getting pneumonia after my visit to the ER. That’s when the ER doctor mentioned to me about fibromyalgia.

Doing my own research

I started to do my own research online. As Google became one of my best friends, I started researching fibromyalgia. I also came across ankylosing spondylitis. I started reading more and more. I noticed I had a lot of similar symptoms.

My primary doctor was trying different treatments. Nothing was helping. We even tried again antidepressants. Nothing helped!

In January 2020, I saw a second rheumatologist, that proceeded with the proper tests. That’s the year I finally got my diagnosis of axial spondyloarthritis.

Weeks and months of not feeling myself. Fighting to find the proper health team that would listen.  Not being able to work. Not being able to do much around me. Having trouble taking care of myself. Struggling to keep my mind from going crazy.

Who knew the day of diagnoses, would change the life I once knew. Who knew I would have to move forward, learning new adaptations in the chronic world.