Two years ago today, I sat in the office of my rheumatologist full of fear and anxiety. You see, I already knew what diagnoses he was about to hit me with. This was only my second visit with him, but the patient portal had notified me the day before that I had a new result, and in my foolish haste I checked to see what it was. I never should have done that. I put myself into the first of many panic attacks while I searched Google for knowledge of these new diseases. By the time I was done researching, I was ready to plan my funeral!
I remember sitting in Dr. Martin’s office, two years ago today, and hearing the words come out of his mouth but I didn’t comprehend anything that he said. He must have understood the look on my face, as his next words still echo in my memory of that day, “Mrs. Perrine, I don’t think you understand. You have two very serious, different diseases going on”. I have never forgotten those words… Two very serious diseases…
Two years later I have come out of the darkness that threatened to consume me. I had some scary days trying to adjust to my new life. I had days I was sure that I would never make it through, yet I survived each and every one. I processed emotions and thoughts that nobody in their 30’s should ever have to think about. I learned my strengths and weaknesses. I learned to appreciate the good days more, and I knew that they would come less often. Most importantly, I have learned to say no to the things that will cause me pain. Sometimes that means saying no to someone you love, and that is one of the hardest parts of living the autoimmune life.
I have had to make adjustments in my life that I would never have imagined. Raynaud’s is my most irritating diagnosis. Raynaud’s causes my body to think it’s literally freezing and going into hypothermia. My hands and feet change colors and lose all feeling for various reason. It hurts and it’s mildly embarrassing when it happens, since anyone around me can clearly see the color changes taking place. I have learned to keep drinks in certain cups that stay warm on the outside, and I grab cold bottles by their caps since it’s warmer there. I hold cold items by my sleeved arms instead of in my hands. I never go to the grocery store alone anymore. It’s funny to sit back now and think of these changes and I am bewildered by the fact that almost none of these changes were from a conscious decision that I made. My body just took over and changed the way it works.
So many things in life are suddenly more important now than ever before. I was never one to enjoy family time, or to make an effort to spend more time with them, but in the last two years that has become insanely important to me. I make the time to do things with my kids now and spend as much quality time together as possible. I never know when my diseases are gonna take a turn for the worse, so I try to make as many memories as possible while I am able.
I spend more time now working on things that actually make me happy, instead of living my life for an employer that will replace me in half a day. I write far more often and I am working on several writing projects at once. I own and manage several pages and groups on FaceBook. I have taught myself how to crochet. I bake goodies with my kids almost daily, and I think they might almost know how to do it without me by now! I spend more time living in the moment, and less time worrying about whether or not this disease is going to end my life. The key is to just live, and that’s what I’ll do everyday until my last.