My Life with Chronic Illness

I grew up on a small farm in rural Kentucky and probably spent more time in the fields then I did in my home. I ran wild in the hills and woods, and loved every minute of it. I don't think that I had so much as a cold growing up, so when I was struck with a mystery illness at the age of 21, seemingly in the prime of my life, my world stopped and very nearly ended.

I was stubborn, I told myself that nothing was wrong and if I believed that if I ignored the symptoms long enough that they would simply go away. My hands and major joints swelled up, I was unable to eat or even get out of bed. It took a swift kick in the butt from a good friend and coworker before I finally saw a doctor. I was diagnosed with a rare autoimmune disease called Dermatomyositis. Basically, my immune system decided that my muscles and joints were the enemy and started attacking them like a normal immune system would a cold or an infection. My body was now in an all-out war with itself.

I got very sick, very fast and had no idea how to handle it. I couldn't get out of bed, couldn't eat and was barely functioning. I was referred to a rheumatologist as an urgent case. The doctor was able to prescribe me steroids that helped with the symptoms for a while, but then they started hurting my eyes, nearly blinding me. Without the steroids I declined again, because none of the other medicines were working and this round I was nearly hospitalized, which was terrifying. I was also fired from work because of my worsening health, so that added more stress to an already hard situation. To say that things looked bleak was an understatement. I was very close to giving up the fight. My doctors are still working to find the right medicines to deal with my symptoms and that is a struggle in itself.

With each medicine comes the possibility of nasty side effects. Because the only way to fix my immune system is to suppress it by using some very strong immunosuppressants as well as spending two days a month hooked up to an IV receiving even more medicine. It seems like my life has started to revolve around medicines of one type or another these last three year. I have to stay on a certain schedule to make sure I take them on time.

I am fiercely independent, so having to ask for and accept help was difficult. That made me realize just how lucky I am because my fiancé and my family gathered around me and took care of me when I needed them the most and never once made me feel like a burden. I have had to change a lot in my life and how I get things done. Right now I'm making my health a priority and cutting as much stress out of my life as I can. Which is hard as stress is pretty much everywhere. I take time to play with my very spoiled dogs and I don't call myself weak if I have to sit down and rest or take a nap. I've stopped getting mad and frustrated because I'm not superwoman and I'm ok with that. I’ve learned just how important it is to make my physical and mental health a priority and not to push myself too far. I still have a long way to go but I'm not walking the road alone.