I am on a journey that started many years before my drug induced lupus diagnosis. It began when I was diagnosed with Crohn’s disease. I didn’t know I was on a journey at first, as a matter of fact, I worked hard not to think about my disease at all. I even pretended that I was fine and everything I did and every choice I made was my own. These past few years have forced me to look in the mirror and come to terms with everything that has happened to me. Sometimes being honest with yourself is the most difficult thing you can do, and it’s been exhausting. My journey changed after the drug induced lupus and it forced me to come to terms with all the truth that I was ignoring for years. The truth is simply that my disease has controlled my life since the day I was diagnosed. I’ve spent years responding to my symptoms and my circumstances and I lost control many years before I admitted to losing control. I started the podcast and the blog because I knew that I needed an outlet and I had to climb my way out of my depression, or I would have no hope of living my life. I couldn’t define what was wrong with me at first. I knew that the lupus was the final straw that broke me in many ways and that I was admitting to how unhappy I was for the first time, but I couldn’t put into words what I was feeling. It’s taken a lot of meditation, therapy, and reflection but I can finally put into words what I feel and want. I am taking my life back. I’m not content to continue allowing the Crohn’s disease to be in control and I won’t stand for it anymore. In 2013, I was diagnosed with Crohn’s and the disease was progressively becoming more severe. As most autoimmune patients can tell you, there is no magic pill or instant fix. It can often take years to find a treatment that works. The treatment that works for one patient may not work for the next patient and it can be a long, drawn-out trial and error experiment that drastically alters the patient’s life. It altered my life, big time. My disease was always most active in the morning. I couldn’t leave my house before noon without threat of an accident or collapse from the unbearable pain. I asked my doctor for help and the only advice he could give me was “apply for disability”. I didn’t want to be on disability and the monthly payment certainly wasn’t going to pay my bills, so I started a business. I knew I could work from home in the mornings and schedule meetings in the afternoon. I’ve worked from the hospital, the infusion center, home, and even the GI clinic. So what was the problem? I hated my new job. I never told anyone because I needed to make money but the truth is, I was so unfulfilled. What was I to do though? It took years to get into remission and one year was so bad I almost didn’t survive. (no that is not an exaggeration) The year my Crohn’s nearly killed me was the same year a friend of mine was diagnosed with cancer. She told me she was thankful she had cancer instead of Crohn’s because the medical community knew exactly how to treat her cancer and there was an end to it. Maybe that was the first moment truth really hit me. I continued without complaint though and it wasn’t until 2019 when I finally hit remission that I began to think that I could go back to doing something fulfilling, a job that made me happy. Unfortunately, my Humira had other plans and I spent nearly 2 years dealing with drug induced lupus. I admit that much of my pain was depression because it really isn’t fair that I’ve gone through so much in life. I know many people are going through similar issues but truly, it isn’t fair. There is another side to it all though. I wanted my control back. I want to be the master of my destiny and a productive, working woman and loving wife that just happens to have Crohn’s disease. I no longer want to be the Crohn’s patient that just happens to also be able to keep up with a career and still have a family. My new treatment plan has me in symptom free remission for the first time in 10 years. I actually forgot what being healthy feels like and it is amazing. I feel like a regular person so it’s time to take my life back. After 10 years, I understand how my disease affects me and what works. I don’t feel I am any different from any other human being in the workforce and I feel no reason to be “othered”. Yes, I am disabled, but I’m an intelligent, well educated, hardworking professional first. I am taking back my life. Crohn’s will no longer be in control and for the first time in years, I am confident. There is nothing wrong with me, everything is right. I am standing up and taking back my life and it feels long overdue.
Comments