How much a journey changes

If you would have asked me in 2014 where I would be today…

Everyone has goals and dreams for life. We all were asked what we wanted to be when we “grew up.” From a very young age, I knew without any doubt that I was going to be a nurse. My health was poor from the time I was born. When you spend your entire life around the medical community, there are pretty much only two options.

The first: run like hell the other direction and never look back! The second: dedicate your life to what you have already grown up with. I chose the second. When I played with my dolls, I always had a hospital set up. They got shots and IVs. When I got sick, my Cabbage Patch doll also was sick. If Vicks Vapor Rub went on my chest, the doll got it too.

A word to the wise…don’t put Vicks on a Cabbage Patch doll. It doesn’t make the doll feel better; it actually makes everyone around you feel worse because of the stench! Okay, so I learned a lesson; menthol and fabric don’t mix well…but I still was providing compassionate care at the age of four and didn’t even realize it.

I was always sick with respiratory or sinus problems from September to May. Every single year this was the pattern. Needless to say, that equals A LOT of doctor visits. By the time I was in junior high, I was telling the nurses what vein to use for an IV. I was picking up knowledge without having to pay for college credits, although I think college ended up being cheaper than medical bills in the long run.

In high school my mom got diagnosed with Multiple Sclerosis. She had been showing symptoms for a long time and we just needed the “multiple” symptoms to finally get the label. One morning she woke up and couldn’t see out of her left eye. I drove her two hours to the neurologist instead of going to school. At that point I had transitioned to caregiver, aside from the fact that she was my best friend.

Starting nursing school finally was my dream and it happened. I was struggling with migraine headaches along with illness after illness, but I graduated with honors. On my weekends when I went home, I was able to practice my injection skills on my mom, who by then was requiring medications for her MS. There weren’t any oral options available yet.

I had always worked in small, rural hospitals. When I say small, I mean three nurses on a night shift, kind of small. The one area that scared me the most, that I vowed I would never work, was the Emergency Room. It turned out that it was one of my favorite places. Before my life was turned upside down, the areas that were my passion were ER, Intensive Care, and Hospice.

Yes, I realize that those are on completely different ends of the spectrum. But actually they are on very similar ground at the same time. Compassion is needed so much in all three areas. In a week, I could have been with a family who had a son or daughter killed in a car accident, had an 80-year-old father removed from life support, and had a 40-year-old pass away from liver cancer. Each situation was unique, but each required empathy, tenderness, and more compassion than you could imagine.

In 2010, I had a mass in my chest that was removed because we thought it was cancer. That was in February. In August, my mom had gastric bypass surgery. Three days later she had a seizure, aspirated, had a respiratory arrest and ended up on a ventilator. I was by her side so much; I wished I could have curled up in bed with her. In the morning I would walk in and the chart was always open for me to look at her labs, ventilator settings, and new orders from the night. Checking the doses on all of the IV medications was my next step and then finally rounding with the doctors. Sitting down each day with the doctors by myself and looking at images. Discussing situations and knowing that as a Registered Nurse, this was a critically ill patient who was losing the battle. Also knowing as an only child, that my mom wasn’t going to walk away from the hospital.

Each year, I blindly walk this road. From August 26th to September 11. It’s a long, narrow road filled with emotion. I’m typing this while tears run down my face. My best friend, my mom, my patient…I had to do the compassionate thing, I had to let her have dignity in her final moments. Making the decision to withdraw life support is one that nobody should ever have to do, even if you know it is the correct choice. No matter how ready you think you are, nothing prepares you for the finality of it. Nothing brings a parent back…no matter how hard you cry or go through the “what if” game…nothing.

Four years later, my nursing career was stopped in its tracks. A virus triggered autonomic nervous system meltdown. My body began to abandon me and I felt so helpless. I knew how rare this was and even as a nurse, I couldn’t do anything to stop it. At the same time, I finally was diagnosed with a Primary Immunodeficiency. Luckily, we could do something about that. 10-hour long monthly infusions, provide me with my “immune system in a bottle” for four weeks at a time.

Last year, I found my voice again. Although my health is still deteriorating, I have been able to advocate for improved healthcare. My compassion is able to shine through and still make an impact. It takes my mind off of my situation and allows me to make a difference on a much larger scale.

Every three to six months, a new symptom shows up. That means learning how to live all over again. More rare diseases, genetic testing, mitochondrial testing…it’s coming.

At the same time, I become more and more involved in advocacy. This disease may have my body, but it doesn’t have me! Welcome to my new life.


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