Soon, I celebrate an anniversary of sorts. Not the kind that you really want to celebrate, but a definite life definer. I was diagnosed with a chronic illness almost twenty years ago. Autoimmune diseases take all shapes and forms and my particular one, rheumatoid arthritis, doesn’t always reveal its affects on the body to the unobservant. To many, I look healthy and fine when many times I am anything but the picture of good health.
With an arsenal of tools from pills to wraps and ice packs like others with chronic pain and swelling issues, I spend much of my time in recovery or preparation for the absolute essential activities of life. We miss out on many of the everyday moments that we, given the choice, would want to experience. No one chooses to spend 50% or more of their life resting or sleeping. But at times, this reality is part of the life of an autoimmune patient. We miss friends and we lose friends because, often, we can’t participate so we struggle with loneliness and depression. A light switch didn’t turn our memories off. We remember and miss our old selves and the abilities we once had, the activities we once enjoyed, and, in my case, the cute shoes I once wore. Real energy sacrificing effort is required to keep from becoming marginalized. Energy, I, often, only have in limited supply. Adapting to a new self or a changing self, as in my case because of my particular disease, takes time, love, and patience on the part of the patient and those that care for them. A somewhat normal and generally pain-free life is possible when the right combinations of drugs and/or therapies are working.
Several months ago, I took an incredible test. Incredible, in the sense, that science and technology has actually developed the ability to determine the activity level of my disease by markers in my blood. Knowing my score on that test made decisions concerning my medication easier for my doctor. The test also comes with an incredible price tag for a blood test, but in the scheme of all things medically related not that bad. The Vectra DA test confirmed what I and my doctor have suspected for some time. The drugs weren’t working. My activity level is high.
I’m not surprised the test came back high. I’ve been dealing with swelling, joint pain, brain fog, and incapacitating fatigue. Some might say they didn’t know. I didn’t look like I felt bad. I have to admit that’s part of my ruse and plan. Maybe, I should share more how I’m feeling but experience has taught me differently. (And that issue, my friends, is for another post.) Forgive me for the missed calls, the condolence and congratulation cards that didn’t get sent or are terribly tardy, and the lack of presence. Please don’t mistake my bad manners for a lack of love, care, and support towards you. I may not be there but my prayers have been.
And if you haven’t realized how I am : How do I make my public life look normal? I choose to be happy and joyful. I attend the things and see the people that are essential to me. Then, I go home and collapse. Somedays, I just can’t go. Those days are the toughest. So for now, I’m saying goodbye to Remicaid and hello to Humira for the next six months. Then, I take the test again and we see.