Expecting the Unexpected

One of the worst parts about going to bed with chronic illness is knowing that you’ll wake up still next to it, soon realizing you can’t do a walk of shame out the door to get away because you’re literally chained to an illness that can put out your fire for days. I don't mean to be negative, but it's many patient’s reality

...waking up day after day in the same nightmare you've lived in for far too long

Going to bed knowing the next day might be the exact same bad day that was today, maybe even worse. Not knowing what will happen is painful and not having people around you who understand is far more difficult and expends far more energy than necessary.

In June, I experienced joblessness. In October, I lost my insurance. To say that 2017 was a character-building year is an understatement. I learned what it meant to be nearly homeless, on food stamps and not being able to make rent. I learned that taking any job would be not a choice but a necessity for me to keep my house and my rescue animals. I was 30 years old and had nothing left to my name, nothing in my fridge and what’s worse, I felt like I had no support.

When I finally did achieve employment, it was through a very wonderful company that cares deeply about it’s employees. Health Union has truly saved me in many ways, and for that, I express my solemn gratitude for them and everyone in this community, who seem to want me to keep writing.

My dream came true when I lost everything and I’ve never looked back.

Writing has always been my passion, my way of communicating to the world. I’m an introvert, so when I first had to learn how to deal with a serious disease and then more illnesses along the way, it was extremely difficult to me to reach out for help. And for so many years, I was so grossly misinformed by certain doctors and specialists which made accepting my disease even harder. Not understanding your disease can make you want to crawl into a hole and never talk about it. So I understand why so many people “stay in the bathroom” with their disease secrets. I am certainly glad that I have found support online, through social media and patient advocacy groups that I can truly rely on in my time of need. These amazing, supportive people will also respect my silence - as they know this is one of the ways I cope.

I know that what I do for a living now, working multiple part-time jobs in addition to writing and blogging full-time, doesn’t exactly mean stability to some of my family members or friends. Someday, I wish just to be enough. To make them proud by making others feel empowered and educating others on a disease they may know so little about.

I’m happy now. Genuinely happy.

I may not be where I would like to be financially. I may always have bills in collections because let’s face it,  there will always be more money going out than coming in for me, no matter how many jobs I work. I have two beautiful nieces and nephews and one on the way that I could not be more excited about. I get to travel a few times a year if/when I’m asked to collaborate with other patient leaders and advocates and I’m still amazed that other people want to hear MY story. I’m grateful that both my blessings and curses have impacted people enough to say “can you explain to me how your disease affects you?” The most rewarding thing to a patient living with chronic disease can be hearing “Thank you for sharing your story with me; I have learned so much and have such a different outlook on the things that patients go through.” That, and a few other nice things. :)

Being a patient is a full-time job and I will back up anyone who says that for the rest of my life. People who don’t experience illness don’t realize how much illness can consume a person's life and how much it can change their path… until it does.