Tuesday, December 2, 2014
Well, what do I say? That is a long and complicated answer. I have been sick for decades. How do retell that long story? How much does she want to know? How much should I drop in the lap of an unsuspecting cousin?
Right that moment, I began to tap out a reply on my iPhone. I just wrote and wrote. I guess you tell your story by just spitting it all out. You just tell the whole thing -- without shame, without embarrassment. To know me is to know the story of my life. It is long and complicated but it is important. I am important. Sick or well, I am important.
I don't want sympathy. I don't need pity.
I only want compassion that is given freely to any other human. What about the ones you love as friends or family?! I only want the compassion that I give to be returned. I don't like Cushing's. I hate it, in fact. However, I know I love my life with true intentions. I give compassion more freely now that I have lived this life. I want people to not be afraid of me and to stop avoiding me because they don't understand my disease or my life now. For those reasons, I told my story with truth and honesty.
I had two tumors on a part of my brain called the pituitary. It hangs below the brain and controls all hormones or chemicals in the body. It is called the master gland. Well, I was very sick for at least a decade and didn't know why. In April 2007, I found the disease Cushing's on the computer. I read and read. I cried. Instantly, I knew I had this disease. So for the next seven years, I have been testing for diagnosis and re-diagnosis to convince the doctors and surgeons I indeed had this super rare disease where the pituitary hormone ACTH works with the hormone cortisol from the adrenal gland to respond to stress in a loop. We know now that Cushing's is not as rare but rarely diagnosed. I had my first pituitary brain surgery in June 2009. The neurosurgeon went through my nose to the center of my head where the pituitary sits. The tumor was removed but I kept producing the hormone cortisol in excess, and that hurt all my organs and kept me very sick. I tested again. I sought help from a Cushing's specialist in Los Angeles, CA after many friends online finally got help from him. My second pituitary brain surgery was in April 2011. Again, tumor and extra cells under the pituitary were removed, but I still felt sick and was not cured. I tested again to confirm cortisol excess in my body. Indeed, I still had Cushing's and my results kept getting higher each time I tested. In August 2012, I tried a medication ketoconazole to lower my cortisol. That did the job but it pushed the cortisol I needed to live every day too low, and I was bedridden and could not wake up during the day. I had to take Ritalin or a stimulant in the am in order to counter the effects of lowering my cortisol at night which left me little cortisol to get through the day. It was a daily struggle to take care of myself and my small child at home. Cooking, cleaning, and self care were impossible. I used every bit of energy to care for my child and I had little left to do anything else. I struggled with this every day until October 2013. I had enough. The Food & Drug Administration (FDA) put limitations on long-term use of Ketoconazole due to the prevalence of liver damage. The drug had already been outlawed in the European Union. I waited as long as I could but I couldn't wait any longer. Cortisol was destroying my life and my body. I began testing for excess cortisol in early November 2013, and my cortisol levels in urine, blood and saliva were the highest I had ever had and definitely proved that my body was flooded with cortisol. It was time to end cortisol production once and for all. On New Years Eve 2013, I had a bilateral adrenalectomy or BLA, the removal of both adrenal glands that produce cortisol. While this fixed my Cushing's disease, it gave me Addison's disease. I don't produce excess cortisol. Now I produce no cortisol. The body needs cortisol! You make it and don't even know about it! I will take medication daily for the rest of my life to replace the hormones not made by my damaged pituitary gland. I take medication to replace the hormones my adrenal glands make. If I forget these adrenal medications, I could die within 24 hours. The body must have cortisol to function. I must take my meds daily and at the same times. I have struggled hourly and daily to find the right amount of medication that matches my body's needs. I get blood tests often to check my hormone levels. It has been very difficult for me, my husband, and my young daughter, and even my parents who come from out of state to help when they can by staying a few weeks to a month to help my family with the daily things I can no longer do because of the damage that Cushing's and high cortisol has done. Then and now, I suffer from muscle weakness all over my body, bone pain, back pain, extreme fatigue, osteopenia, anxiety, depression and other mental disturbances, insomnia, and other things I can't even remember I suffer from because my brain is always foggy.
What I know for sure is that I am a fighter. I will continue to fight for myself and my family who supports me daily with hugs, love, and laughs. I am an advocate to help people get diagnosis and treatment sooner. I have maintained a blog since 2008 at http://cushingsmoxie.blogspot.com because back in those days, an internet search for Cushing's produced more results for dogs and horses than humans. Well, the blog is a success with over 600,000 hits total. Many patients have contacted me through the years, and we have gotten them to diagnosis and surgical treatment. I speak to hundreds of patients a week to answer questions about testing, surgery, and surviving a life and body flooded with cortisol. They learn from me and I learn from them. This disease is very complex, very nuanced. The story is different but the damage is the same. As patients, we take care of one another. We provide a safety net where none existed before. We are ill but united. As I move forward every day, I know I am doing my best. I take a set amount of cortisol and aldosterone replacement daily. If I get stressed, my body uses up that set amount and my body has no cortisol to run basic body functions. Therefore, I avoid stress at every turn. I don't watch the news. I stay away from people who bring me down. I am fighting to fill my life with more joy and less junk. I'm looking for a sort of bliss that comes after years of being in bed, not being myself, not doing what I wanted to do. My thoughts and actions focus only on that: BLISS.