We Are All Pain Warriors
My battle with IC began when I was 20 and in college. I am now twenty-six years old and have been engaged in this fight for the past six years. IC often impeded my ability to do everything I wanted in college, but I always had my girlfriends – my “support squad” – as I called them. At times the pain was almost unbearable. I suffered from severe abdominal pain, pelvic floor dysfunction, etc., and felt like giving up. Then I had a change of heart and re-channeled my anger with my symptoms, which being so young, wasn’t easy – living with a chronic illness is hard to accept when you have your whole life ahead of you. I was determined to not let IC control my life. The next year, I bought and renovated a townhouse. Immediately after college graduation, despite being a proper, southern lady from a small town in Virginia, I moved to New York City to follow my dream of being a city girl. While I was still in Virginia, not one single doctor treated me as I deserved, and I was passed around like a ball at football practice, even being told everything I was feeling was in my head. That all changed when I met Dr. Robert Moldwin.
Shortly after my arrival in New York, I started working for a car rental company on Long Island. I was always ranked top at sales and received recognition for my passion and dedication to customer service. One day at work, I met a catheterized customer who needed help getting into his car. During our conversation, he noticed the heating pad on my chair and inquired as to why I was sitting on a heating pad in the middle of summer, so I told him about my bladder troubles. To my good fortune, he personally knew a doctor at The Arthur Smith Institute for Urology. Right then and there, that nice gentleman called Dr. Smith and arranged an appointment for me with Dr. Moldwin. What a lucky girl I was! At our first meeting, I told Dr. Moldwin my story and cried about being 22 and losing hope. He put his gentle and caring hand on my shoulder and said to me, “I will do everything I can to help you. You’re way too young for this”. To this day he has kept his promise and has never given up on me.
There was still a long road ahead of me, however. Dr. Moldwin foresaw both my lupus and IBS diagnoses. I had a urachal duct with a cyst removed as well as the dome of my bladder at 23 years old. During my IC diagnostic testing I was found to have the condition with Hunner’s Lesions. I’ve had more procedures and surgeries than I can now remember. At 24, I had an Interstim placed in my back. All the while, Dr. Moldwin guided me while also helping treat my IC and other conditions.
Now I’m headed in the right direction and have my autoimmune conditions under control. I have so many it’s become a joke among my loved ones that I have a monopoly on them, but I remain optimistic. My strength grows each day and I am very hopeful I will soon be back at work. Through all this, I’ve come to realize that several behaviors are essential to successfully living with IC. Continuing to remain positive is crucial. A healthy relationship with your doctor(s) is also paramount. Another essential is a good support system of whoever you can rely on (friends, family, church members, neighbors, support groups). Finally, you must do what is necessary to endure – even if that means sitting on a heating pad at your desk while you work in the middle of summer. I’m proud to say I go out when I can, I’m in love with a wonderful man who pushes me to get up and moving, and I found gardening is a great talent of mine (and relaxing too!). Remember you aren’t alone! We are all pain warriors.
Margaret Paige Howard