#30 - Differences with Disease...Savoring, not Surviving

What is the most challenging part of managing your Addison's or Adrenal Insufficiency? Probably, it would be learning to note the day-to-day, minute-to-minute possible changes in the body's need for adaptive dosaging. This is not a condition where you "take two" and lay down. This is not a condition where you always have the luxury of making a future doctor's appointment to figure out why your blood pressure is momentarily plummeting. This isn't even a condition where regular EMS workers can always help because many of them do not carry our emergency injections on board their emergency land craft. No, this condition requires self-vigilance to your body so you can begin to recognize warning signs indicating that you might need to take a stress dose. Since it is the season of head colds, chest colds, etc., we are in an especially vulnerable time of year that might require adjusting our daily dose. Staying ahead of the game is crucial. It probably isn't a great idea to sit around and wait for the chest cold to set in fully before we decide to double our dose. Once you get signs of feeling run down, just an overall "tuckered" sensation, it's probably good sense to start swallowing some extra pills before your body starts to rebel.

Recently, I met with a medical professional and researcher to participate in a study that looks at how adrenal insufficiency impacts our life, physiologically and psychologically. If you cannot drag your feet to do your bidding, then your life will feel pretty much out of control. Doing your best to stay on top of your situation is a never-ending important endeavor. Don't give up. Each day is a new day...learning to distinguish the "little" differences in your body that could be a warning sign that you need to increase your meds is often a talent that takes a bit of time to master. Even with a great deal of time, it can still knock us off our feet. So, just do your best.

Also, during my awesome session with the researcher, I was under profound gratitude that research will soon reflect the vast differences of each person's body and the realities of how each person is impacted by an adrenal malfunction. One aspect of my discussions with the researcher was how one person with an adrenal malfunction can actually live on a high level of functioning; these people are fortunate enough to perhaps never need an emergency injection while there are other people who are more adversely impacted by their adrenal insufficiency and may suffer intensely while constantly trying to manage a wild-like condition. Not everyone has their disease packaged neat and tidy in a compartmentalized file-box of "you-do-this-and-you-should-not-have-problems" instructions. Unfortunately, adrenal insufficiency is a medical condition that can manifest itself differently, depending on the host body. My body is not a pleasant host for this disease; it tends to be rather mysterious and not consistently respond to regular, conventional treatments. It is a roller-coaster ride, every day, every hour...I am on guard for any slight changes that have me deciding whether or not to take more meds. Of course, I do not relish the thought of extra steroids in my body, not after having this disease for this long, so I am careful to distinguish my body's need so I do not overdo it, yet not under-do-it because either can equal trouble. I find that it's a tight-rope we must walk, finding balance is not easy. My little divided container of pills is so nice, but the organized neatness often becomes a small part of the daily task as I try to mentally sift through my symptoms so that I can hit the right medicine bottle in an attempt to self-medicate. Yes, self-medicating is a huge part of having Addison's/Adrenal Insufficiency - that is another area that is uncomfortable for the ENTIRE medical community who is rather comfortable with the "take two" prescription lifestyle. Having to leave the PATIENT with so much responsibility and power is not comforting, usually, for either the patient or the doctor, but it is necessary.

Sadly, many with adrenal insufficiency, especially those with children diagnosed with these conditions find that management is not a matter of "take your medicine and you'll be good as new." No, this medical condition has many, many variables...some people are subjected to more variables than the next person, so you cannot expect one person with this condition to tell you how it should be. They can only tell you of their experiences. Many of us with adrenal insufficiency/Addison's will relate to shared sensations, although, there will also be some people with this disease who pretty much escape the dark side of this beast. Just as we see "survivors" of breast cancer --- some had a simple fight, others have fought ruthlessly for years and years without a break, there is no equality --- and so, there are those people who fight adrenal conditions (often combined with numerous complications) with valiant effort beyond understanding. In my diligent research of this condition, I have come across fellow-sufferers who have stories of great triumph, yet there are others who were engulfed by the breakdown of little glands...adrenal glands, pituitary gland, etc. If you do not "suffer" from this disorder, then you are very fortunate for many of us have suffered unspeakably with adrenal issues --- many of us have been forced to fight for our lives, some of us, including me, on multiple occasions. With this condition, being side-swiped and taken off guard is not understood unless you have seen an Addisonian Crisis in action or have experienced it first-hand. Feeling your body sink further into the depths of a heaviness too far reaching to explain is not something you want to experience. So, I have learned that being a "survivor" or a "champion" is sometimes less about the surviving part and more about the level of your battle. For some, it is easier to be that "survivor" than it is for others. Fair? No it is not fair, but remember what your momma always said, "Life is not fair." She was right. If she didn't tell you this, then surely you have discovered it on your own. I have seen people with the spirit of a champion, yet they are not allowed to continue the race...sometimes, surviving is more about luck. But, who are we to say that being left behind is the "best" kind of "luck" to find? Maybe it isn't. Still, we fight. That fighting is the hallmark of a champion. So, maybe we should not focus on "surviving," perhaps we should continue fighting while focusing more on "savoring" all that is at our fingertips. I am savoring more than I can say...



The Husband & The Niece