However, after my endocrinology consults, I had been shocked to be given hugely different warnings. Most doctors said that this disease ONLY affects you after a there is a physiological stress such as a broken bone, surgery, a cold, an injury, etc., The general consensus was that an emotional stress did not warrant an increase in medication. Initially, I took this advice at face value. However, I soon understood that most doctors who are giving this advice are lacking critical EXPERIENCE with this disease --- as an individual and as a physician, and this truly hindered their advice-giving.
When I was 38, my mother lay six houses down from me in her bedroom, dying. I had been pulling long days, consecutively, and long nights. My body was worn down and my mental state was frayed. My mother, a brilliant woman with her Master's Degree in Education was lying before me unconscious with a DNR (Do Not Resuscitate) order posted in her room, in the hallway, on the front door of the house...the final moment was approaching. Reality of life and death was palpable. She was only 57 years old. Just four days previous to this, she had been able to even go to the bathroom on her own --- the downturn was fast and furious.
Hospice had come for their visits and offered to give physical help along with the awesome medications to ease her suffering, but we decided that our family had formed into a mini-army that would be by her side til the end. As kind as Hospice workers had been, no stranger would be caring for our mother in her last moments. The hands that offered compassionate care would be filled with historic love.
One evening, I walked past the six houses that separated me from my mother and I knew my body was falling into that Addisonian pit. I went to my drawer to pull out my Hydrocortisone and found four pills. A little alarm went off. Next, I headed for my "emergency stash" and found that my past weeks of mother dying had obviously constituted an "emergency." To make the bad timing worse, I had no refills. As a Kelsey Seybold patient, I knew that I would have to phone their on-call doctor for after-hours care so I could get a refill, especially because the weekend was approaching. That evening a doctor returned my call and I proceeded to tell him that I had Addison's Disease and was under tremendous emotional stress because my mother was expected to pass away at any moment, plus my medicine was down to no more than two days dosaging. He put me on hold for a moment, then returned to say curtly, "Addison's is in no way affected by emotional distress, so I cannot authorize an emergency refill."
This was my first serious experience with a physician not being COMPLETELY aware of the ramifications of how emotional stress impacts a person with an adrenal insufficiency. I wanted to sit and drill this dimwit with a few questions...Does stress affect a cardiac patient? Yes. Does stress impact a patient with Parkinsons, Multiple Sclerosis, Cancer, Stroke, etc.? Does the obvious have to be tattooed across his forehead? Emotions are PART OF OUR BODY. Emotions have an impact on the functioning of our body. Emotions can affect our immunity, our resistance. Emotions can directly affect our capability for healing. Emotions are part of the fuel behind every function of our body.
As I was growing up, my father wanted to prove a point to me. He hooked up a blood pressure cuff to his arm and told me to pay attention. As he sat in his recliner, he had me take a reading. He sat motionless, but I could see his eyes narrowing and his mouth pulling into a tight grimace --- the blood pressure reading was sky high, top number was 210. Then, he said, "I want you to see how I can control my blood pressure with my thoughts," and he sat in the same position but his eyes softened and his mouth relaxed, he took a deep breath and told me to retake the blood pressure. This time, the top number was 110. His heart-rate had also reduced dramatically, all in a matter of minutes. He told me that he wanted me to always remember how our thoughts, our actions and our emotions are tied to our health. Everything is connected. My burly father knew more than the whitecoat I spoke with years later.
Fortunately, my situation with my mother dying and me being nearly out of medication was handled by my local pharmacist. He knew the severity of my situation and gave me an emergency supply to last until I could get to the endocrinologist. The day after I spoke with the on-call physician, my mother died.
A couple of weeks later, when I saw the endocrinologist, he hung his head out of disgust and told me that his associate was clearly wrong. He begged his forgiveness because he said that most doctors do not even know the word "Addison's" much less the intricacies of how it is woven in our bodies. He explained that emotions do have a direct correlation to our disease and requires the same diligence as a chest cold would require.
During my recent meeting with a researcher in Houston, I was overwhelmed with a strong connection of understanding because he put this topic on the table. As an experienced medical professor, a holder of a Ph.D., and licensed for his various medical professional capacities, he explained how he has ALSO been a patient with adrenal insufficiency that resulted from a pituitary tumor --- starting back in 1995. The psychological connection to his bodily functions was thoroughly defined by him in a simple, yet profound way,
"Our emotions affect our health, AND
our health affects our emotions."
As I write future entries, I will be covering other very important topics regarding adrenal insufficiency/Addison's that are often not discussed. Your comments, thoughts and emails will only add to our journey. Every day I learn something new and I can say with solidity that meeting with this doctor has been above enlightening. When he first contacted me about his research, I conducted a few credential background checks, and then I straight-out asked him why he was doing this research. He gave me straight-forward response (para-phrased), "I was diagnosed with adrenal insufficiency and upon doing research, I was finding too little of it available and much of it to be incomplete, wrong or too narrow, especially in the mind-body connection." At first, I felt very sad that he has had such a brutal experience with this condition, his road was not easy. Then, I was thankful that he was using his diagnosis to make a difference.
It has taken me nearly ten years to discuss my condition and to openly share my personal experiences, mostly because this condition is so difficult to explain. To be in open discussions with people who are not limited by their own experiences is refreshing. I have discovered that the shameful feeling as if I am a walking health-disaster is something I am not alone in feeling. Sometimes a disease or condition selects you at random; this condition can be a sneaky fox. But, knowing that our emotions do deserve full acknowledgement as a piece of our health puzzle is powerful in itself. I recommend, on a personal level, that you pay attention to all that is going on in your life and discuss this general psychological mind-body connection with your own physician. Hopefully, he or she won't be antiquated in their thoughts. Bottom line: If they think that emotions do not have an impact on YOUR condition, YOUR body, or YOUR state of health, then show them how their limited capacity for cerebral functioning impacts their pocketbook. As the researcher here in Houston hopes, one day in the near future, the medical literature available to doctors will begin to reflect a true educated and experienced voice for those with adrenal insufficiency. It will clearly indicate that a patient with this condition may indeed need a proper stress dose for certain emotional stresses, again, the final solutions will have to be ascertained by the patient with self-dosing knowledge. Til then, stay in close touch with your body signals, especially if you're laid off from work, dealing with an unruly teenager, going through a divorce or whatever might be sending emotional surges through your delicately-balanced body.
|My Family - A Blessing|