#61 - Adapting to Addison's

I had once written that I wished there had been a handbook for those of us who have been diagnosed with Addison's and for our families too. Well, I meant an emotional handbook that included frank information about this disease, to help prepare and to discuss how our lives are truly impacted when a person in the family is diagnosed with Addison's.

If I would have had this handbook when I was diagnosed with Addison's approximately ten years ago, I think I would have kept it next to my bed and referred to it over the next couple of years. Knowing that each person is diagnosed under different circumstances, there are still similar feelings and emotional hurdles that need to be faced.

I am not a doctor, but my personal, direct experience with Addison's has been an incredible learning experience. I recognize that each person is different, so you have to find what is right for your family when facing Addison's. Hopefully, you do have a good doctor who can think out of the box and understand that Addison's has so many variables and the textbook answers are clearly not sufficient, as of yet. I know people who are working on that angle, but it will be a long journey. In the meantime, by sharing our personal experiences, we might actually find ourselves ahead of the curve. That is my hope for all of us. So, below are just a few of the many things I wished that me and my family would have been counseled about wholeheartedly when I was diagnosed...

#1 Disbelief: Sometimes you can feel as if they got the diagnosis wrong. Addison's?? You've never heard of this disease. It is so rare that it is difficult to believe that you have it. Family members may react by choosing to believe that you do not have this disease, they cannot remember the name of the disease, so it must not exist. There may be days when you feel completely normal (on treatment) and you might want to "test" whether or not you really have this disease, but don't do it. It is an emotional-roller coaster to the day you accept this diagnosis. Meanwhile, do everything you can to help yourself feel as healthy as possible.

#2 Prescription Mystery: Many doctors will do a poor job of explaining the need for an Addisonian to increase meds, as needed, to include emotionally-stressed situations due to outdated reference material. Also, it is important that a patient find a time-schedule for dosing that works best for them. This is not the regular disease or condition where you get a set amount of medicine or a disease with high-tech gadgets that can definitively reveal your "levels." It takes tremendous dedication to be in synch with your body to recognize subtle or hammer-head signs that indicate a need for increased dosages. Just imagine diabetics who are very precarious in health and them having to live without a glucose monitor because it doesn't exist. Well, that is what the Addisonian is confronted with. An Adrenal Crisis with rapid life-threatening changes is our lifestyle and it does not include any solid monitoring devices, other than your own senses, to determine a fast course of action to self-medicate as needed. You'll have to find what times the meds will most bolster your energy level, what times you need a pick-me-up and what times you need to taper so your body can actually get a healthy amount of sleep. You have to find out what works for you. That takes a lot of time, frustration and dedication to get it right.

#3 Sharing your Diagnosis: What to say? Another huge issue after diagnosis is learning how to explain your condition to others. Sometimes, you need to satisfy a friend's surface curiosity, sometimes your health depends on a solid explanation with technical jargon, but it can be tricky because the person listening may not be capable of absorbing the information. Usually, for those who are curious, you can start with saying, "I have a rare disease that you've probably not heard of, a necessary part of my body has quit working and I must take medication several times per day with an emergency injection always ready, because it can be life-threatening. My medicine helps me to live a normal life, but this is not a condition that will go away, I will have it to treat it for a life-time." Then, if the person is receptive and intelligent enough to want more, you can explain cortisol production, etc., but I would not use the technical words at first because most people simply shut down or have a limited mental picture. I don't find a need to give a Biology lesson to those who are interested, unless they are wanting it to be explained in such depth, otherwise, you'll quickly be looking into glazed-over eyes. You also need to be patient, you'll have to repeatedly explain it to most people in your close circle.

#4 Lifestyle Changes: Depending on how sick you have been, this can vary tremendously. Those who do not fall into dire circumstances with Addison's before diagnosis seem to have a better time adjusting. That would seem logical. Of course, if your body has gone into a state of critical health and if you have been sick for so long that your body has been in this weakened state for an extended period of time, there can be long-term side-effects...physically, mentally and emotionally. It depends on how far down your body has gone and how taxed your organs and system had been. Sadly, there are people who do not make it from an Addisonian Crisis, others are left with permanent damage, then there are people who get a diagnosis after feeling unwell, but their life had not yet been drastically altered by the disease and might not ever be altered. So, the people who get a good start with their diagnosis are more likely to be at the launch pad ready for take-off when they get started on treatment. Addison's encompasses such a broad spectrum that is difficult to understand. Not one Addisonian is the same in how the disease impacts their body, yet we are all similar. If you have other medical conditions that tax the body, then your Addison's disease will likely endure more management struggles. It's a big picture to look at when you get a diagnosis, unfortunately, many doctors are only capable of viewing a tiny corner of the overall picture and they miss out on too much.

#5 Family Stresses: The introduction into the world of Addison's disease can indeed cause many stresses upon the family. Everyone seems to be living in a state of heightened alert, especially if your household had been severely disrupted by Addison's. The more severely it is disrupted, the more traumatic it can be for the family members. Having a child with Addison's presents more challenges for the family as a child is often eager to ignore symptoms so that they don't have to stop whatever they are doing to address something so irritating. It make take some straight-forward discussions and family meetings to make sure everyone recognizes the signs of an Addison's crisis and to make sure the child learns to pay attention to the warning signs. The family may be stressed by the potential problem, but making sure everyone knows how to administer an emergency injection - having instructions always posted in an easy to find location with the syringe and vial also taped near the instructions is vital, choose a location that is not too tucked away, maybe inside one of the kitchen cabinets or medicine cabinet. When a person is confronted with having to handle their loved one's crisis, the instructions should be numbered or bulleted so it is easy to follow during possible panic and brain overload that can blow every perfectly rehearsed moment into chaotic bits, provide very concise instructions in clear stages. This can empower a family and be of real assistance during a crisis.

#6 Little Warning Signs: We always read of the symptoms an Addisonian gets BEFORE diagnosis or hear about what happens during a full-blown Adrenal Crisis, but we rarely read about what the little, subtle warning signs might be after diagnosis when cortisol levels or other areas go into fuzzy zones. There can be brain "fog" to where you cannot think clearly. You might have trouble walking and begin to stumble or find it more difficult to pick up your legs. You might have muscle cramps or abdominal pain with or without back pain. Of course, nausea might be present. Constipation might be serious because the gut is not in action like it should be or you get huge waves of dizziness out of the blue. Your eyesight might be going really blurry. If you feel lethargic and unable to move your body with ease, then you might need to think about a stress dose. Whatever your symptoms might be that could indicate a need to increase your dose, pay attention and you'll soon learn that your body probably has some sort of pattern for regular day dips in cortisol. Now, emergency situations are different, because they all vary, but day to day, listen to your body and be in tune to changes. Those subtle warning signs are a huge part of Addison's disease, so know its importance.

There are more, but these are the highlights I wished to have had someone literally walk us through so that we could have been in less shock.

My little sister is a counselor and I believe that a patient getting an Addison's diagnosis should definitely have a counselor who is specifically trained in Addison's to help the family adjust, especially for those families who have endued great trauma to get to the diagnosis. Maybe one day we'll get to that point in our healthcare. This disease is so rare and so unique in the way it is manifested that we are often left to being "tested" by life and this is when we learn how to self-regulate our condition the best we can. As most of us know, even under the best of circumstances, things can go wrong, so it is great to have a plan. Talk to your family. Make this a business meeting that is necessary for the household to be run more efficiently. The alternative is not a good plan.