ENTRY # 3 - Sweeping Pen

Simple Description of Sweeping: To brush aside or to clear away...

The past ten years has been a long road full of nasty twists and turns that are very difficult to re-visit. For years, I’ve kept so much of this intensely private. Recently, I decided to expose my experiences in an effort to reach out to others who have troubles from medical issues. More than that, I am especially speaking to my Addison companions.

Of course, I know there will be people with other conditions who will relate to my story, but I am also trying to bring awareness to this disease. Awareness with Addison’s is a huge problem. Having a rare disease usually means that it will not be discussed so easily for the simple reason is that it's not understood. I have also discovered, to my detriment, that this disease is barely recognizable on a competent level by many medical personnel during times of true need. That comment is not meant to be insulting; it is another fact that most people with Addison's Disease have confronted. If you have found a Dr. who possesses beyond a facade of Addison's knowledge, then you are blessed. However, lack of disease comprehension is definitely a repeated experience that I have faced in times of medical urgency with Addison's. A physician taking a quick re-fresher peek into a medical reference is not enough ammo for the patient ambushed by an Addisonian Crisis.

I think one of the reasons that medical personnel cannot grasp the idea that an innocent stomach bug is a killer for a person with Addison's is because these people still look rather healthy. Many times during this past decade, I have been unable to hold down pill-form medications because of a 24 or 48-hour stomach bug. This is a dire situation for an Addison's patient. If they cannot get keep their medication down, they are in serious, immediate trouble. They must go to the emergency room for intervenous treatment or shock will soon follow. And, I can tell you...going through cardio-vascular failure due to shock setting in is not the most pleasant trip I've taken.

Usually, upon entering an E.R., the first battle might be with the Dr. who is initially assigned to you. It is highly irritating for a Dr. to take the easy-chair route with your treatment until they see vitals failing. But, a patient should not be forced to endure attempts to get the Dr. to hurry with the I.V. meds so that they can live to see another day. I have had a Dr. tell me that he knew what he was doing, then he'd leave to be a doctor down the hall. His decision to suddenly get into gear after I could not respond any longer and after my blood pressure had dropped to 60 over 40 was, to me, unnecessary.

A physician without experience with this disease often cannot fathom the sly onset of an Addisonian Crisis. I have been that person who entered the emergency room after being unable to hold down my medication. It is embarrassing. and I don't want to be there. I may may be sick, but am able to talk, laugh and I have decent color and vitals. However, like a person with highly poisonous venom running through their veins...I know what is coming...shock. Vomiting in front of other people is bad enough, but in between bouts of wretching, I remain calm and try to intelligently explain my condition. Any physician experienced with Addison's understands immediately that a rather minor injury, a bout of vomiting or an uncomplicated medical procedure can easily kill a person with this disease. Those doctors will fly in action.

To protect yourself and to combat these unexpected hurdles, the patient and their family must become mini-authorities on this disease. There is not enough time to delay treatment. If the Addison's patient or loved one must speak up, they need to know their business. In the past, my husband has also been forced to issue a wake-up call to my treating staff. But, you must be able to speak up for yourself. Most often, you will be the one who has to watch out for yourself. Loved ones are not always physically present. Therefore, expect your treating medical team to adequately tackle complicated issues involved with this disease; however, if they can't, don't waste time...talk to your treating physician with straight-forward wording. Do not tip-toe around their feelings. Be kind, firm and concise. Great doctors are in our midst; use your precious time very wisely. It will be worthwhile; besides, great doctors will not be daunted by your determined knowledge. Great doctors might be great at doctoring, but they are ordinary people. Many physicians are in their field because of their own traumatic medical experiences with a loved one, either past or present. These doctors are more tough than you probably realize, and they do not relish a patient dying in their care.

If you end up in an E.R., always try to get an immediate Endocrinology consult. Immediately. If a Dr. is on a self induced ego-trip and doesn't like you informing him of your disease because he doesn't like to be told "...how to be a Dr...," then you probably need to rush over their fluffy-stuffed head. As a patient, you must get over any rose-colored illusions you have about physicians. Be respectful, but firm. A Dr. is there to do their job. Their business is...you. They do not stand on pedestals. The most brilliant, competent doctors are extremely connected to their patients; they instinctively know that patient-input is at the heart of everyone's well being. Brilliance knows how to listen. That doesn't mean they will have an awesome bed-side manner, but they are good at what they do because they don't get too wrapped up in themselves. Having a bit of an ego is okay, just not overly self-indulging to the point of mirror-perspective. You need a doctor who is beyond checking out his white-coat image in every mirror he passes. I chuckle out loud. If you are a medical professional, you are processing this...you already know one of these Mirror-Chasers. Actually, you might know a few of them. Anyway, to a good doctor, patient care indeed comes first. Regardless, as personal managers of Addison’s Disease, we need professional allies. You just might be a challenge to any medical staff. That's okay.

As for the emotional tug-of-war that you endure with this disease, you definitely need a method that will help you channel some of the frustrations. That could be your personal support system or a hobby that helps you re-focus. One outlet that has helped me get through every peak and valley has been my private journaling. As a life-long, avid writer, I developed an important connection to those blank pages. Things I could not bring myself to discuss with others, I would write about. Each line seemed to help clear my mind.

Only during extremely difficult times did I stop writing. When I was going through episodes of rock bottom battles, I actually have journal entries where my penmanship is illegible. That was the result of being much too sick and weak to even form words. However, during these times, I didn’t even realize that my writing was that unreadable. I remember being propped up slightly on pillows, unable to hold my journal securely, but I just went into auto-pilot with my pen to paper. My goal was to simply get some of the mess out of my head. The pen was like a broom; writing was my way of sweeping the debris out of my mind.

During the lapses of time showing no entries…I was usually in the hospital or physically unable to even conduct an activity as slight as writing. Currently, I find it ironic that I must coax myself to go back through these journals; doing so is a stress-producer within itself, but I am doing what is necessary for me to move forward. I hope that my candid revelations will provide solid information and key emotional ties to those living, in some capacity, with Addison’s Disease.