Dear Dawn,
You never had a clue how much your life would change four years ago, thinking you had the flu and crashed with full on acute renal failure with two weeks in the hospital. You were naïve to what was really going on, which at the time was a good thing. You live by numbers, so asking the doctors to tell you your numbers and then you telling them how you feel would make more sense over time after you had nephrotic syndrome at the age of 48. You would come to understand what doctors meant when they said, “Be grateful you were diagnosed with minimal change disease.” You would find the courage to question the medical community, to research to the Nth degree and in time...would come to accept the diagnosis. You would learn about all diseases under the nephrotic syndrome umbrella, and you would quickly learn to become the project manager of your own health.
You would learn that people who you thought would be there for you in crisis weren't, and other people would step up to the plate more than you ever thought possible. You would learn that your body is asymptomatic for certain things, but you tend to experience the very worst of side effects from the high doses of meds. You would have never realized how dark your life could get and you would never realize it was a side effect of the medication until much later. You would come to learn that acceptance was the turning point, along with finding a doctor and a team who knew this disease and honored your need for information, your constant questioning, your need to have some control over the situation, your need to be able to get labs when you want, partner with the doctor, and question them on anything and everything. You learned to become your own best advocate.
You came to learn how you've worked in the clinical research industry for 20+ years, but got handed a diagnosis of a disease so rare that there were no FDA-approved treatments. You learned quickly that quality of life matters, that food, sleep, exercise and self-care are so important. You learned to not take things for granted. You learned that staying home away from the world due to meds would become a way of life, but that you were grateful when certain medications were working. You learned to listen to your body, not freak out on the relapses and to set goals for yourself. You learned there are others much worse off than you. You learned to become resilient. You learned that instead of two autoimmune diseases, you'd be diagnosed with three total. You learned lab visits, hospitals, doctors, medications and specialty pharmacies would simply become part of your normal life. You learned to let go of the people who let you down, who didn't “get” your illness or how sick you were, or who minimized what you were going through.
You also learned what true love means. You learned your husband would stand by you through all of this, that he is your true support, your partner, and would stand by your side and continue to stand there with all the ugliness this diagnosis brings. You learned he would change his life to ensure your safety and wellbeing, and that compromise and sacrifice would be something he never even questioned.
You learned to let go of things that used to bother you, to gain a new perspective on life, and to really understand what is important at the end of the day. You learned in time to appreciate that tomorrow doesn't come for many, and that waking up feeling good is a gift.
You would learn that people who you thought would be there for you in crisis weren't, and other people would step up to the plate more than you ever thought possible. You would learn that your body is asymptomatic for certain things, but you tend to experience the very worst of side effects from the high doses of meds. You would have never realized how dark your life could get and you would never realize it was a side effect of the medication until much later. You would come to learn that acceptance was the turning point, along with finding a doctor and a team who knew this disease and honored your need for information, your constant questioning, your need to have some control over the situation, your need to be able to get labs when you want, partner with the doctor, and question them on anything and everything. You learned to become your own best advocate.
You came to learn how you've worked in the clinical research industry for 20+ years, but got handed a diagnosis of a disease so rare that there were no FDA-approved treatments. You learned quickly that quality of life matters, that food, sleep, exercise and self-care are so important. You learned to not take things for granted. You learned that staying home away from the world due to meds would become a way of life, but that you were grateful when certain medications were working. You learned to listen to your body, not freak out on the relapses and to set goals for yourself. You learned there are others much worse off than you. You learned to become resilient. You learned that instead of two autoimmune diseases, you'd be diagnosed with three total. You learned lab visits, hospitals, doctors, medications and specialty pharmacies would simply become part of your normal life. You learned to let go of the people who let you down, who didn't “get” your illness or how sick you were, or who minimized what you were going through.
You also learned what true love means. You learned your husband would stand by you through all of this, that he is your true support, your partner, and would stand by your side and continue to stand there with all the ugliness this diagnosis brings. You learned he would change his life to ensure your safety and wellbeing, and that compromise and sacrifice would be something he never even questioned.
You learned to let go of things that used to bother you, to gain a new perspective on life, and to really understand what is important at the end of the day. You learned in time to appreciate that tomorrow doesn't come for many, and that waking up feeling good is a gift.
