This year is the first year in a long time I can say, truthfully, “I’m Well.”
Five years ago I could not say “I’m well.” Only 42 years old and the fatigue consumed my waking moments which were shrinking in frequency. I wondered why I could not stand for more than a few minutes, jealous of my mother in law who was 73 years old and could stand longer than me. She could play with my kids for hours while I could only play with them for minutes.
We learned that our son had a condition called Childhood Nephrotic Syndrome. His onset was swift and severe. Our 5 year old Pillsbury doughboy had accumulated 12 pounds of fluid, his legs swollen, while his blood pressure climbed. That September weekend was our inauguration to the Children’s Hospital parent experience. We’ve driven by the hospital many times before but it wasn’t in our forecast. Now the hospital was on our constant radar. Gratefully, he responded to treatment and the acute phase winded down to a maintenance phase, then, things for me worsened.
A few months later my muscles of mastication (chewing) stopped working well and my body lost 19 pounds of weight. My muscles of articulation (talking) stopped working well and my husband had to read stories and books to our children. Walks through my beloved Target required a break to rest. My right hip stabbed with pain and my mind pounded with worry about why I felt so awful. The question “How are you?” was concealed with the reply and redirection “Fine, and you?”.
For months, my doctors were perplexed as tests returned with varying results and different results consecutively. For months we tried different treatments with no change of symptoms. Finally one test carved a path to understanding and it was then that I learned about the ANA Titer.
When you are exhausted, discouraged, and consumed with a constant barrage of thoughts veiled by brain fog, you develop a new set of standards. Your hopes for feeling better are replaced with hopes of knowing what or why. Even if the outcome is bad, you would find relief in hearing it. Ironically I was glad to hear that I had UCTD, an autoimmune disease. This isn’t like when you are nine and glad for an injury because it will garnish some much desired attention. Instead this is having a name or vocabulary term for the vortex that has consumed you. It was validation.
For years I’ve tried many Integrative methods and treatments (conventional and complementary) to manage the symptoms and hope to ‘cure’ my condition, learning a great deal along the way. I’ve learned that my condition is not curable and that for me it’s a matter of maintenance. I’ve learned self-care methods can be expensive and time can be squandered trying in effective treatments. I’ve learned from research, from personal experience, and from the reflections of others who share similar experiences. I’ve learned there is learning around us, constituting different formats, and we are allowed to accept and process this learning however we choose. Some moments, that processing might end in anger. Other days it might end in joy. The pendulum swings back and forth constantly. This site has been created to support people navigating through wellness and those who are caring for others who are navigating through their journey. At the very least some of the posts and education pieces will validate your experience, at the most it give you helpful direction. My hope is that by sharing this Blog and website, my hindsight will be your foresight.
Today when asked “How are you?”, I reply “I’m Well,” and my expression is authentic and candid. I’m feeling better than I have for the past 7 years. If this is ‘well’, I’ll take it. I hope you find your ‘well’ too.