Addison’s Disease Diablog: Two Women, Two Accounts
Lauren and Grace collaborated on this Diablog. Both have Addison’s disease.
Lauren: When Grace landed on my blog while doing a search for “how to live while living with Addison’s disease,” her quest and her use of language immediately resonated with me. An e-mail marathon ensued, and I invited her to co-author a chronicle of the pre-diagnostic, diagnostic, and management phases of our Addison’s journeys. We both live in the U. S.: I live in the Pacific Northwest; Grace lives in the Northeast. We are the same age, 58, both married, and we both believe that all events transpire not by random coincidence, but through the sovereign providence of God.
Lauren: The most remarkable detail I experienced a few months prior to my diagnosis of primary autoimmune Addison’s disease was that I knew I was dying.
Grace: For the two years prior to diagnosis I thought I was just getting old and slowing down. I’d joke, but it wasn’t really funny for me, that Wednesdays now felt like Fridays- I was running out of steam. If only I had known how true that was-I was running out of the stuff that drives the human engine, cortisol.
Lauren: I have a bloodline imperative that becoming an invalid is not an option. I have a routine. I have certain tasks that I do the same day each week. I have fibromyalgia and arthritis, so I budget my energy with the routine to try to belay total crashes that can last for days. I have certain rules that I follow to maintain my routine and to prevent stress. One of these rules is that I don’t go to bed during the day no matter how tired I am. If I fall asleep reading, that’s okay, but I don’t go to bed unless I have a fever and a serious acute illness, something that very seldom happens.
Grace: There was one rule growing up in our house-sickness was a personal weakness to be avoided at all costs. Not having a stoic personality, I earned an undeserved reputation for being a slacker. To combat this, and to help put food on our table, I developed an insane work ethic: I valued myself on the basis of how much money I was able to bring home. My career as a RN started out at the same time I became married and a new mom-at the tender age of 21. I thought crazy amounts of stress were normal, when in reality it was all I had ever experienced growing up. It took me close to four decades to realize what a nearly-deadly lifestyle I had embarked on.
Lauren: In the summer of 2007, I became faint walking to my laundry room. I was unable to stand for any length of time. I hyperventilated trying to speak. I simply had to lie down, sometimes after being up only a couple of hours in the morning. I recalled the humiliation and misery I experienced with doctors who did not believe in fibromyalgia. “There’s nothing wrong with you,” rang again, loud and clear.
Grace: Over the past two years I had begun to call out frequently on Thursdays and Fridays because I thought I was falling asleep at the wheel — in retrospect, I was having pre-syncopal (pre-fainting) episodes. Only by the grace of God I did not actually pass out and potentially injure someone else. I know of a woman who was diagnosed only after she passed out — at the top of her steps. She fractured multiple vertebrae and spent most of the next year in the hospital and rehab.
Lauren: I researched my symptoms, and came up with “adrenal fatigue” as a match. Unfortunately, naturopathic sites promoting adrenal fatigue can be a great disservice. I settled for this diagnosis, took extra vitamin C, and figured I would tough it out five or six weeks. If my symptoms didn’t resolve by then, I would see an endocrinologist.
Grace: By the grace of God — yet again — I had a MRI done as part of a workup for migraines in 2007. The results were normal except for a partial empty sella, and that was the first clue that something physically may be wrong with me. The sella tursica is a bony cavity in our head, located at the base of the brain, and that contains the pituitary gland which is one of the most critical glands in our body. The pituitary is the endocrine system’s “Grand Central Station”; it sends out chemical signals that control the function of multiple glands such as the thyroid and adrenals. We each have two adrenal glands, one on top of each kidney. The adrenal is composed of two portions; the inside part, or medulla, makes adrenalin; the cortex, or outside portion produces many hormones, one of which is cortisol. If the cortex no longer produces cortisol, this creates a condition known as Addison’s Disease. It used to be fatal before steroids were invented — timing is everything! Good thing I wasn’t born 50 years earlier.
Lauren: My symptoms worsened, and I had been presumptuous in assuming that an endocrinologist could see me within four months. At that point, my husband and I both knew I wouldn’t make it that long. He moved a few mountain ranges and somehow got me in to see an endocrinologist within the week. I saw the doctor, was tested for everything imaginable the first day, returned the second day for an ACTH-stimulated cortisol test, and heard back from the doctor the following evening. Chronic adrenal failure. Addison’s disease. Impossible. It’s funny how I could know I was dying but never suspect I had a chronic disease.
Grace: My type 2 diabetes was not under great control, so in early 2009 I made an appointment to see an endocrinologist for the first time in my life. I took a copy of the MRI with me, and told him not only the information about my diabetes but also what had occurred 29 years earlier during the birth of my last child. I had a rare complication of pregnancy and suffered severe post-partum hemorrhage requiring about 15 units of blood. Because of this, my BP was critically low for the better part of a full day. When I was conscious I asked my nurse what was my systolic BP (top number)- with a hesitant voice she told me-40. Not good. Not good at all. Weeks later my OB doc told me this much hemorrhage can cause damage to the pituitary gland, because it was deprived of its own blood flow. After the MRI result, I began to wonder what had really happened to my pituitary-if it was functioning properly it should have taken up the entire space of the sella tursica. But my MRI showed an empty space where the pituitary should have been. What happened?
Lauren: As far as work issues, I had already put careers as an epidemiologist, journalist, and attorney behind me and had been happily at home for nearly 10 years when I was diagnosed with Addison’s. Consequently, I was fortunate to have no upheaval in my life concerning whether I could continue working. Life goes on pretty much as normal, even if normal is never the same again.
Grace: Summer of 2009 I was formally diagnosed with secondary Addison’s Disease and started on a lifetime of oral steroids to replace what my body no longer made. It was easier to replace the steroid than it was to repair my lost sense of self — I had always worked fulltime, with overtime. Sadly, I had once defined myself by my money making capacity and now was unable to work. Who was I, really?
Lauren: I am not so sanctified as to have no resentments. To name a few: my life depends on the stable production and distribution of a controlled substance, and on the continued existence of endocrinologists, and the necessity of living within driving distance of them. I become excessively indignant with people who push naturopathic remedies for Addison’s (there’s no such thing!) because they believe hydrocortisone must somehow be “hard on me.” But I have learned to simply respond, “When you say that, all I hear is ‘drop dead.'” Hydrocortisone replaces cortisol, nothing else does, and cortisol is necessary to life.
Grace: My last job was as a university hospital-based nurse case manager, primarily dealing with insurance and discharge planning issues. It had become extremely stressful during the past year, in no small part due to the recession and increased needs of the patients. As a nurse case manager, had been able to get doctors to do pretty much what I asked of them, including filling out forms and writing prescriptions as I instructed. Now I was (drum roll please) a patient. Roles reversed. I have to tell you-it sucks to be the patient . Now I have to plead with doctors to get my paperwork done, especially for disability. People tease me how ‘lucky’ I am to be able to stay home now. You have got to be kidding me — lucky? But maybe I am lucky — lucky to be diagnosed, to have a loving and supportive family. Lucky to not have been born before Dr. Addison figured out what this disease was. His wife had the disease, and it killed her.