I downed a bottle of Alka Seltzer severe cold medicine in a water bottle before I stepped on stage at the Autoimmune Walk NYC to speak. My cold was killing me. My chest was burning. My voice was fading and my nose was running but I was at Pier 95 and I was going to speak. I was going to make the friends, relatives and co-workers that supported me and came to hear me proud. I stepped up to the microphone with my speech in my hand and I folded it in half. I decided not to read it. Rather, I chose to speak from my heart.
I knew I wanted to say something to fire up the crowd about living life to the fullest despite the obstacles these diseases pose. The words of Dylan Thomas came to mind: "Fight, fight until the dying of the light." Then, I thought I needed to share my own thoughts; my words not someone else's. After all, I've lived with my chronic illness for more than 25 years now. I thought it was important to share that traditional medicine isn't the only reason I've made it this far. So, I shared my triple a plan for living with a chronic illness.
I asked the crowd, “Who here got triple for their car after they bought it? Why? Because you wanted to make sure if it broke down in any way, you could get help and your car could be saved. I suspect you did that because it was/is the most valuable thing you own, it's expensive to fix, and you may even love it. “
I explained how, to me, the most valuable thing I have isn’t my car or my house, it’s my life. My body is the most expensive thing I've ever had to fix. And, that's saying a lot. I own a home… and anyone else who has one knows it’s costly because something is always breaking. Still, my body has eaten through my savings. In just 14 year, I've paid nearly two hundred thousand dollars out of pocket for procedures, tests, medicine and doctor's visits; and that's with insurance and working full-time. I paid even when it hurt because I love me. I suspect no one will ever love me like I love myself. I've gone through ups, downs, aches, pains, loves and losses and I'm still here. I love that I have the spirit of a fighter. I didn't always feel like I'd make it. Living with an autoimmune disease wears on you. But, I have vowed not to give up or give in.
I read tons of books and articles about coping with chronic illness and for me it all boiled down to three words beginning with the letter a: Accept, adapt, achieve . Acceptance was the first and hardest part. I couldn't come to terms with the fact that I was suffering from an autoimmune disease until I found a doctor to give it a clear, concise name. I spent two decades getting sicker, weaker and more frightened; and no one could pinpoint the cause. Then, I decided I needed to use my skills as a journalist to find some answers. (Fear of death is a great motivator, btw). So, I became what I call a medical detective. I wrote down all the doctors I'd seen, 26 of them by age 35. I wrote down the various diagnoses, medications and tests I'd had. I collected all of the reports and medical records. Then, I got on my computer. I put in my symptoms to see what conditions they matched and I quickly saw that they lined up with a possible autoimmune disease. So, I looked for a guide to the best doctors in the field. I narrowed my choices down to three and got appointments at each. The first doctor was awful. He dismissed me, brushing off my issues as if they were trivial. But, appointment number two was much different; that doctor read my file and had an tentative answer to my mysterious illness when I walked in the door. She took out a piece of paper and wrote down: igg4-rd.
William Shakespeare asked: "What's in a name?" I submit to you that there is freedom and power in a name. Knowing what I had led me to Mass General Hospital to the Igg4 center; a place where hundreds of other people suffering like me receive treatment. Knowing what I had let me know that the procedures is endured were necessary; that my illness was not just in my head. The name of the sickness freed me to find the best doctors to treat me. It also released from the fear that there was no hope for me. Accepting I had an autoimmune disease meant understanding that I can't be cured but I can be treated; I can have a better quality of life.
Once I came to that realization, I had to learn to adapt to my ever changing body. When inflammation in my spinal cord and hip made walking difficult, I scarred the nerves to relieve pain and I began carrying a cane. It gives me a much needed third leg; it gave me stability. I bought a car that’s easier to get into and out without bending too much. it also has seats that flip down to hold a walker or a scooter in case I need to use one. I started to every day at around the same time so I don't forget to take my medication. And, I stretch every morning to loosen my joints. the most important thing i did was to start taking every Monday off from work to rest.
By making simple changes to my lifestyle, the difficulties my disease ridden body has thrown at me hasn’t broken me. I am able to achieve most things I set out with thought, patience and determination. And, I release my doubts and blog, my memoir and speaking to other people suffering from any ailment that might slow them down. Achieving tasks from the basic to the complex makes me feel hopeful about my future. I fall back on my triple A plan often to work through new curves balls posed by aging with an autoimmune disease.