ENTRY #21 - Addison's Mysterious Handbook?

Short Description of a Hobby: an activity that USUALLY increases leisurely amusement. But, if this extracurricular activity is beneficial because it increases life-saving strategies, it might be the best hobby you ever started.

Addison's Disease or adrenal issues can be sticky conditions to confront. Whether you are living with this disease or are helping a loved one who does suffer with this diagnosis...it is difficult. That is the simple summation...it is difficult.

Upon diagnosis, we often hear insufficient, technical details about this disease. We learn about Cortisol and steroid treatments and stress and there is usually no one around to call to talk with the little, intimate details of this disease. Often, our mind goes into sputter-mode, then races around, then sputters again, and we are given few answers. The LACK of digestible information can, in itself, be overwhelming. When a medical condition is more prevalent, it is simply easier to discuss. The frequency of discussion means everything gets chewed and broken down so that it is easier to swallow. As for those with Addison's disease or adrenal insufficiency...we are stuck with gristle. Keep chewing.

I am finding through incredible emails with other people living with Addison's disease that we share a lot in common, even though our individual experiences are unique. Often, we feel inadequate. But, our experiences can be shared; good and bad situations can be discussed. If you have the direct support of others who have knowledge of this issue, then it is possible that you can sit and share an appetizer while a wordless understanding passes between you both. For the rest of us, we need words or music or prayer. We need to express ourselves, to know we are not alone, and we need to quit living in fear of facing the ramifications of this disease. But, when you and your family are facing a rare medical condition, it can surprisingly become the elephant in the room you all tip-toe around while being silent. Sometimes it's easier to remain silent. Yes, there is a time for silence, but if you face this disease, in any capacity, then silence is not your friend. Start practicing being loud and clear.

The problem with an emotional side-effect of Addison's Disease is the tendency for patients to withdraw. The symptoms can lead to embarrassment. Personally, I do not relish being nauseated in public, and the muscle weakness with a sudden and dangerous plunge in blood pressure can be enough to make you run for a nearby cave. Who wants to end up on the floor as everyone stares in confusion? Yes, I've been there a time or two, and it's not a treasured vacation destination.

After years of living with Addison's disease or perhaps after you face an Addisonian Crisis or two or three or four, it becomes natural to find yourself frustrated over the lack of overall knowledge that comes with this disease. For those who are dealing with an inordinate amount of suffering because of adrenal issues, there is usually not enough understanding to be found. For patients with Addison's, even those who do not show outward suffering are likely fighting unseen demons. Addison's patients, I'm finding, are the true masters at disguise.

A person who has cancer has an immediate quasi-understanding of this diagnosis. Just about anyone who hears the "C" word has an moment of instantaneous comprehension and they often find standard "cancer" images flashing across their mental screen. Concepts of tumors, radiation, needles, chemotherapy, pink, bald heads and more are closely tied associations linked to cancer. Over four years ago, my beautiful mother died from breast cancer. She had a brutal, invasive carcinoma that rapidly metastasized in spite of radiation, surgery and five separate chemo treatments. In less than three years after her initial diagnosis with two tumors discovered in her lower left breast, she was gone. She died at only 57 years of age and without time to boast of life-telling wrinkles. I desperately wanted to see her live long enough to have long lines, little lines and deep lines etched into her porcelain-doll face. Was I close to my mother? Well...yes...emotionally and physically. I lived six houses down from my mother's house. So, I can honestly say that I hate cancer with every cell in my body.

It is terrifying to be told that you or someone you cares about has cancer; we are so programmed to understand the deadly potential of cancer. But, even though Addison's can be deadly, it is not readily comprehended and this can add to the negative statistics. After my mom's "Big C" diagnosis, one afternoon we held one of our many powerful conversations. But, this afternoon we discussed our conditions. In her sweet, yet very educated Southern voice, she told me that she had made a few random observations about the similarities and the huge differences between our diseases. Earlier in the day, she had contacted her breast cancer support group, so the topic festered within her because she definitely understood Addison's disease from my numerous experiences with her by my side. I listened as she explained...

--Addison's disease, like cancer, can kill.
--Addison's disease, like cancer, can leave a person alive, yet tragically altered.
--Similar to some cancers, Addison's disease can often be managed and endured, indefinitely.
--Addison's is a diagnosis that might not be immediately attached to the dreaded word "terminal" but it also means living with the fact that the next day might mean your life has ended because of an Addison's Crisis. Yet, the flip side means that not having that word "terminal" automatically attached to the Addison's diagnosis means you have additional, incredible "hope."
--Cancer and Addison's both mean that medical treatment does not guarantee survival because sometimes the best intervention is not enough for either.
--Some cancers can indeed be "cured" completely while Addison's is a life-long condition that will never go away.
--The last, stark difference she mentioned on this day, after talking with her support group was that, unlike cancer, Addison's is not a common word. It is not an easily understood disease.

Personally, I've never seen or heard a doctor trying to pronounce the dirty word, "Cancer." However, I have seen too many ask me, "...and how would that be spelled?" I'd call that question a rocky start, at best. I guess those of us who battle Addison's at the homefront have a duplistic desire. On one hand, fortunately, for the general population, Addison's disease is so rare that it is not likely to be easily understood by one casual sentence. On the other hand, unfortunately, for those of us who are intimately acquainted with this disease, this means fewer people, personally and medically, will grasp the ramifications of this disease. For some of us, that rush for a textbook answer is too late.

I've heard a doctor once say that he never had seen a patient that "looked so great while dying" until he had seen an Addison's patient. This doctor was on E.R. duty in the Houston area and a young, female patient walked by herself into triage and promptly told the staff that she had recently been diagnosed with Addison's, but she'd lost her job and had not been properly taking her medications. This doctor, who I also consider to be a friend, said that this woman was his very first Addison's patient, and he immediately knew this was a life-threatening situation. Her blood pressure was a tad low, but he quickly treated her as if she were in an obvious full-blown Addisonian Crisis. As they attached the IV, gave the solu-cortef injection, fluids, etc., she was laughing while simultaneously saying she felt "weak." After aggressive intervention and numerous consults, this woman was dead within six hours. She had waited too long, had been unmedicated for too long and it was too late. She was in her twenties and appeared healthy, other than having Addison's. This physician was devastated. Addison's disease can be like the monster under the bed. Sadly, this woman hit the point of no return. She did admit to being very sick for about two weeks prior to going to the E.R. Sometimes, as many of you know, an Addison's Crisis can go so far that is difficult or impossible to reverse. This is a very solid reason that this disease should not be ignored.

Of course, there are stories of people who live to be a ripe old age with Addison's Disease. Perhaps those people don't have the dangerous levels of imbalance that others with the disease are prone to experience. Additional medical conditions are a serious complication for those with Addison's disease...if you have a condition that is taxing to your body, it follows common sense that the physiological stress will add to the trouble with treating the Addison's. Do physicians discuss these things freely with their adrenal patients? Drawing upon my personal experience, the answer is a resounding, "NO." Putting the pieces of the puzzle together takes too much mental energy. Once the degree is hanging on the wall, many doctors feel as if study-time is finished and auto-pilot has kicked in. Could this be another reason for Addisonian patients and their loved ones to be pro-active? Absolutely!

A blog friend and I were communicating the other day about a simple cold --- it can be deadly to a person with Addison's Disease. Is this fact made abundantly, without-a-doubt, unquestionably clear to new patients and their families? Often...the answer is, "No, not so much." What about a "minor" broken bone? How about a case of food poisoning? What about emotional stress that is so serious that it taxes the body's regular health level - such as when a loved one dies? These are things in our treatment that must change. How is a person to switch gears so dramatically in their lives, especially when the diagnosis is something you have never even heard of before? How do patients go from taking over-the-counter medicines (such as Dayquil) for a cold to suddenly grasping that a previously "annoying" cold can now be as deadly as a major heartattack? It is incomprehensible.

Usually, the instructions are rattled off by a hurried doctor as we sit there overwhelmed or as we are trying to cope with being very sick and our mental absorption rate is not at its best. They might tell us that medications are to be increased under conditions of stress, but there is often a grave misunderstanding in what this exactly means. Sometimes elusive answers are purposefully given because of their own lack of understanding. Once, after my first question, I had an Endocrinologist flat out tell me, kindly, "Look it up on the Internet; that's your best reference for this disease." At least he was honest. Wow.

Where is the instruction booklet for those dealing with Addison's or adrenal insufficiency? Where is the quick reference guide? Well, keep looking because we are out of luck. Often, we are not given enough initial information to sufficiently enable a new patient to properly treat this condition. That could mean life or death. If we are not told, how are we to know? Or, the doctor provides a Cliff Notes version in a way that is grossly understated for life to be sustained during an emergency. Maybe there should be a textbook issued to new patients at diagnosis, and the next appointment can be "test" time. That is an amusing thought. We'd all avoid all doctors! But, imagine...it surely would be the "test" of a lifetime. I am positively convinced that very few people with medical degrees would pass those tests without having to study beforehand themselves. And, here we are...fathers, mothers, nurses, executives, engineers, poets, artists and business people...we are not adrenal experts. Your doctor could guess wrong and that could cost a life. Yes. This disease is serious. If you have battled it on a heightened level, then you have already been educated beyond your desire.

So, how are we supposed to become mini-experts in this disease? Personally, I am sick of reading dry, narrow-minded medical abstracts that do not consider a huge VARIABLE. That variable is daily life and different, unique people. How do you fit this disease in with the job, school, family life and the laundry? What action do you take after hearing, "Mrs. Jones, your child has Addison's disease and must avoid physiological stress while taking medications for the rest of their life." How do you handle the news, "You have a serious adrenal insufficiency that means you no longer produce the 'fight or flight' hormones and if you get sick, remember to double your meds...Have a nice day." What? Sick? Surgery? How sick? I never had to go into over-drive for survival after catching little upper-respiratory infection. This must be a mistake.

What if you don't feel like tackling this disease? Well, that's another huge problem...you must. At the least, you need a head-strong advocate. Anyone who has dealt with this disease for a significant amount of time and who has faced unfortunate health circumstances involved knows first-hand that they must bravely arm themselves with knowledge. This is for survival, not for recreational purposes. You may have never wanted to know about anything science related. Perhaps science was the most boring subject you ever approached; perhaps you flunked science. If so, you will just have to work harder. No easy route. Regardless, if Addison's disease has hit your home...that blissful science-avoidance bubble has burst.

Keep digging as far as you can go. Don't give up. Adrenal science is now your second hobby. On the next questionnaire that asks you to list your hobbies and interests, I dare you to write, "Adrenal Science." If you get a confused look, tell them it was on the Star Trek episode they missed. Let the fun begin!

Back to a serious note...confrontation of Addison's or adrenal issues also includes facing the emotional consequences that accompany such conditions. Now, that angle is without a scientific answer. Each person and each family has their own story, yet we are all linked. How do we conquer this deficiency and clean up the emotional debris left behind by Addison's? I suggest that you keep dusting. When dealing with a disease like this - there are ongoing battles - do your best to prevent build-up. There are many messes. Our emotional state requires regular maintenance. Just as the rest of our body needs attention, so does our emotional state. And, this disease can really leave a physical and emotional disaster behind, repeatedly. The trick is to confront each mess as they come...as best you can. Confrontation has become a part of my personal basic survival. Start building your foundation and you will become stronger, day by day.