Monday, July 12, 2010

ENTRY # 6 - The Beast

Short Description of a Beast: an irrational and aggressive monster willing to tear you from inside out.

It's hard for a normal person to really understand the seriousness of Addison's. What is the danger for a person with Addison's disease? The short answer: stress.

Everyone has heard something about the "fight or flight" response of the body. It's a term used loosely and it is an incredible mechanism within our body that is taken forgranted by most people. Let's suppose that you get into an accident and an awful thing has happened...your body is injured. Without you having to do a thing, it begins. A marvelous first-line of defense begins to work miracles in your body. The adrenal glands kick into auto-pilot. Those glands start their incredible job of going into high gear which is the "fight" mode. For normal people, this means you get flooded with excessive adrenaline. It's an amazing process; adrenaline is your life-saving friend. It serves you honorably during times of physical danger. Adrenaline is like a knight in shining armor rushing to save you.

Two pea sized glands over your kidneys dump this magical hormone into your blood stream and it is as if you are sprinkled with Fairy Dust. Suddenly, you are morphed out of the normal-ever-day human mode into the almost-super-human-mode. Sometimes, those moments of being super-human are enough to allow you to live another day. Adrenaline strengthens you and buys you time. The Fairy Dust (adrenaline) courses through your body and it kicks your body into a high, unnatural gear. In a moment's rush, your body goes through major changes...the heart that might have been weakening is starting to beat harder and the blood pressure that might have been falling is suddenly increasing and pumping more furiously; your struggle to breathe is altered as your airways are opening more fully so that each breath comes deeper and easier; your blurry vision sharpens as your pupils dilate to allow your vision to be narrowed for intense focus, but your peripheral vision lessens in the exchange and this is okay because you only need sharpened focus right now; your body releases a load of glucose into your blood and this extra blood sugar gives you more super-fuel for a burst of energy that could in itself be life-saving; and also important, you will be able to endure more pain than usual and since an accident might involve an injury, this aspect of an adrenaline dump is most gracious and kind to our body. All of these combined extraordinary "powers" gives you a boost of super-strength which surpasses any ordinary moment of strength.

Since I have Addison's Disease, I find it fascinating that the military, other warriors and fighters across different forms and cultures are actively learning how to best use adrenaline rushes to their advantage. They are learning how it affects the body; how to best use its resources and how to come down safely from the rush as the effects subside and normal life returns. But, for the rest of us, we don't really think about the power contained in adrenaline. Most importantly, for an every day person minding their own business...we don't realize that if we are in an accident and hurt badly, this adrenaline dump would very likely be our internal hero. It would help to sustain you and stabilize declining vitals during a time when your normal body would be disintegrating.

The flip side of this amazing prospect of getting a burst of adrenaline is that once the adrenaline rush is over, you are pretty much wiped out. It can feel as if you've just finished running a crazy impromptu race. The brain is sort of dragged along for the ride and is so shocked by all of the sudden changes that it can't keep up and it can't record all the happenings because it is over-powered. In fact, during the entire adrenaline dump episode, it may have seemed as if time itself had stood still.

Adrenalin dumps are a magnificent part of our arsenal for times of crisis. Untold numbers of people have made it through extraordinary circumstances because of adrenaline. Amazing stories of incredible strength and endurance have come to life simply because these people found themselves reacting as adrenaline coursed through their veins. I've heard of men and women lifting cars up off of a loved one; I've heard of people surviving a crash in spite of horrific injuries; I've heard of a person being shot, yet running to the nearest emergency room before collapsing...we've all heard these amazing stories and have been perplexed by the sudden ability of these people to fight an otherwise sealed demise.

The wonderful stories of adrenaline-fed heroism is indeed a testament to the human spirit. However, for those who have Addison's Disease - the need for adrenaline during an emergency is not an option. The body no longer produces it naturally. It has to be absorbed synthetically...through medicine. The good old "fight or flight" scenario is a one-way street for a person with Addison's disease. If an emergency happens...if they get into a car accident, are trapped under a beam or faced with eminent danger, the person with Addison's has a body crash. Without properly functioning adrenal glands, a person's power source is absent. If you have Addison's Disease or Adrenal Insufficiency, then your adrenal gland factories are out of business. The body's sudden need to call upon an emergency reserve of super-human fuel is not an option. The store is closed. What does this mean exactly? Let's start with the "normal" person who has working adrenals. If they were to be in a car accident which resulted in broken bones, but they are not life-threatening injuries, they will be in agony; however, they will be OK. Conversely, a person with the same injuries with non-working adrenals with no means of immediate synthetic adrenaline will be in critical danger. Without fast intervention, survival is not so likely to take place. This has nothing to do with a person's "will" to survive. It is the same as a person being held under water - no amount of "will" can make their body suddenly be able to live without oxygen. The same goes for adrenaline. In case of bodily injury, adrenaline is similar to oxygen - it's required to continue breathing.

Every day, you must have adrenaline, also called cortisol. But, we'll talk about "regular" daily living another time. For now, it is an emergency situation that I am trying to sort through. It is complicated. In some terrible situations, adrenaline can help hold a person over until medical personnel can do their thing. An ordinary person is fortunate enough to get an additional rush of adrenaline during a critical time and it is this auto-response of the adrenals that saves a person's life. However, the Addison's diseased person goes through a different process. Instead of getting the rush of adrenaline to propel the body through a time of great stress, the body simply slows to a complete stop. The blood pressure plummets, the heart pumps faster and faster because it's trying to get blood through the vessels, but the blood pressure action - kind of like a snake swallowing its prey - is no longer cooperating. The heart furiously pumps blood out, but the vessels are not doing anything cause they are calling it quits. Your body must have blood pressure action to circulate your blood throughout the many vessel-lines in your body; without pressure, there is no movement; without movement, there is not life. Soon, the blood pressure drops so low that the brain and body can no longer function well enough to enable coordinated effort. The person eventually transforms into a ragdoll. I have been that ragdoll.

Usually, based upon my multiple experiences in this state of existence, I can tell you that this person can still hear all that is happening around them, at first. One time, as this happened to me, my vitals showed the onset of cardio-vascular shock, I laid there unable to respond. Stuck inside my earthly cocoon, I understood my dire situation, but I could no longer control my own body. Quickly, I got to the point of not being able to even open my eyes. But, it was odd because I could still hear sounds - starting as normal sounds of frenzied action encompassing me and then the sounds became more distant. Where was I going? Where was my body being taken, and where would the rest of me end up?

If there are medical staff close enough to provide a rapid response for a person with Addison's disease during this crash, called an Addisonian Crisis, they are usually unable to find a pulse because it is too fast to record. Additionally, they often can't get a blood pressure reading because it is so low that it won't register. I have so much experience with this situation that it seems "normal" to me. As for our falling blood pressure, sometimes, to the horror of the medical attendant, blood pressure is recorded as it rapidly deflates...84/62, 73/51, 64/40...How do I know all of this so well? That's easy...that was my own blood pressure readings during one episode that happened in less than five minutes as paramedics were in my master bedroom trying to get me to the hospital. I felt their panic. Here they had found me in my room and I was initially able to tell them how I was too weak to walk and needed help. They start taking my vitals bedside and I rapidly decline in front of their eyes. On this date, in 2001, I was apparently a rather healthy-looking, young 32 year old woman, but they discovered that I had begun to die on them before they could even get me out of the house and on my way to the hospital. This is also when I learned that paramedics prefer for the ambulance to not be moving as they are trying to stabilize a dying patient. Seems ironic to me...perhaps a paramedic can explain this situation to me more fully. Regardless, those paramedics were under tremendous strain. My daughters were watching their mom die, and the paramedics were doing their absolute best to prevent the worst from happening. Thanks to them and to their success...I eventually got to take another trip home from the hospital.

Anyway, on this afternoon with the paramedics by my side, I heard the vital reports being repeated to each other with urgency. My heart rate was soaring at over 200 beats per minute. By the time my blood pressure was about 60 over 40, I was unable to stay totally conscious. I was disappearing - it was like I was fading away. I could hear everything around me, but I could not move a muscle nor open my eyes. Things were going terribly wrong, but I could do nothing but lie there and depend on strangers to bring me back from the brink of death. If they didn't, I would have slipped into a deeper state of shock/coma and my lungs would have collapsed...I would have gone into complete cardio-vascular failure. The most time you can survive in this state is about ten minutes. So, if you have Addison's Disease, you better have people around you that have the ability to respond without hesitating.

Even with the best of care and my most diligent awareness of having Addison's Disease, I am still faced with these Addisonian traumas often enough to know the drill. Now, I keep my pill Hydrocortisone medication always close by, and I also have the Solu-Cortef vial and syringe ready. Unfortunately, over the past decade, I have been in this position too many times to count. Fortunately, I have experienced repeated miracles so that I am alive - today. I never take a day forgranted. It's probably impossible for most people to understand what it is like to be on the verge of death so many times...I'm beyond second chances. Sadly, I am very well aware that many Addison's patients never get beyond their first Addisonian Crisis. The reality of this is enough to bring me to my knees. Even now, as I sit here and write, I am brought to tears for the people who go through these cardio-vascular shocks, yet it is not possible for them to be revived. Their family....moms, dads, children, husbands and wives, brothers and sisters, best-friends...all are left behind wondering...What could have been different? How could this have been prevented? Why didn't we see the signs sooner? So, so, so many questions and this is when we must accept the truth...Addison's Disease is like a thief. It can and it does rob a person of life without any warning.

Having a diagnosis of this disease is not like other can be the picture of health in one second and, literally, the next second can find death approaching like a clap of loud thunder without a cloud in the sky. Sometimes, everything possible can be done and it's still too late. Once an Addison's crash starts, it is not always reversible. The body can be stubborn. Organs can start the process of failure and sometimes there is not enough medical intervention in the world to make a difference. This is why a person with Addison's Disease can walk into an Emergency Room with something that seems so slight - a broken arm, a 24-hour stomach virus or a bad cold and they can be laughing or joking with embarrassment about their own medical condition while looking pretty darn good. This patient must have "adrenaline supplements" added to their system immediately. Even a simple cold pulls on your adrenaline reserves without you realizing a thing. The adrenal glands quietly dump extra adrenaline into your blood stream, as needed, so that you can withstand the sickness that is dragging down your body. It's not a huge dump of adrenaline to the point of feeling that flush rushing through your system, no, your body is an incredible creation and this situation only requires enough release to keep you going so the cold won't totally take you down. However, the person with Addison's Disease does not have this luxury. So, standing in the E.R. and waiting for the meds to be administered might seem like no big deal. Those seconds ticking by might not seem so critical. But, if you have an adrenal insufficiency...once the body has had enough, it will start to shut down. That laughing patient might go from a sick person with a smile to a sick person who is now unconscious and coding. Not a fun scenario.

Is this scary to a person with Addison's Disease? Well, they learn to live with this possibility, but the reality of a personal emergency is ever present. My fellow brothers and sisters with Addison's Disease have often acquired amazing coping skills and survival techniques. They eventually gain very unique survival techniques that can help them get through an Addison's Crisis on their own or they at least know enough to hold them over until major medical intervention can take over their own efforts. If a person with Addison's has lived through these times of crisis, then they understand the Pink Panther element of Addison's. It is often a sneaky beast.

Is it scary for people who live with a person that has Addison's Disease? Again, that's another area of brave adaptation. Family members and loved ones develop a great resilient nature in the face of potential danger. For the immediate family members and loved ones who are within arms reach of a person with Addison's Disease, they must face truths about this condition. It's better to face the possibilities and to arm yourself with knowledge before it is required to be put into action. Be prepared for battle. Your enemy is sly and it is a ferocious beast. Therefore, keep your wits about you. Have a plan of action in order. Face facts and seek knowledge - for that is your sharp-edged sword.

Lastly, maintain your faith. If you have Addison's Disease or Adrenal Insufficiency and the beast starts to overtake your body; don't fight because that is only a faster means to your undoing. If you are ever lying there, unable to speak, do not panic. It sounds strange. I am giving you this highly personal advice only because I have survived this state on multiple occasions, and I believe my God-given technique has been my source of strength. Behind forced closed eyes, I submit. Your "fight" is different from "normal" people - they have an ally in their fight - it's called "adrenaline." You don't. I don't. So, after you have followed all other procedures to stave off a crisis, I found that I have increased my odds by not fighting. This does NOT mean that you should not get immediate medical help. You should always reach out for help at the first sign of trouble. At least let someone know you are feeling willy-wonka. But, if an Addisonian Crisis in underway and I'm without immediate help or if I am suddenly unable to get up and walk...I do my best to give my body a chance to slow down its processing so it can possibly buy time until life-saving intervention begins. It is an indescribable challenge. I won't lie.

In spite of following all Addison and Adrenal Insufficiency guidelines, this disease is a booger to outwit. I've still been the one on the gurney, hearing the distant voices of my children crying and begging the paramedics to let them ride with them so they can be with their mommy. I will not tell you that my own survival technique of embracing complete inner-calm is easy. It's not. During these times, I feel as if I am a prisoner of war, and I only have my emotions left to control. Every other internal string to my body has been cut. Deep inside, I find the will to be at peace, to breath slow - in spite of whatever my body is going through - I focus on something beautiful and graceful, such as a butterfly resting on a flower with its wings gently floating back and forth. I picture my children's faces in my most precious treasured memories. I might even start counting backwards, very slowly and rythmically from ten to one. Let the chaos around you fade away. During a crisis, you cannot participate in that side of life. You must take yourself to another place and focus, not fight.

I often draw upon my childhood Bible and the famous verse in Ecclesiastes hits home with me for this experience. Chapter 3, verse 1-8 includes, "There is a right time for everything...A time for war; A time for peace." During the silent war raging inside of me, I must choose to remain peaceful within my soul. If it gets bad enough and I have done everything possible within my control, I must find my peaceful inner world and let medical professionals take over. Don't be embarrassed to call 911. I have found that paramedics are often your best-life-saving-friends. If you can't make it to a hospital, call 911. Make sure they understand your medical condition and let them do their best.

Most people have never completely lost control of their bodies and their heart-rate and their blood-pressure - everything spirals downward. This is not a simple case of fainting or passing out. This is the body shutting down on a permanent level. Sometimes you cannot fight the must go with the flow. This is one of those times. The old adage, I'll go out "kicking and screaming" is simply not conducive to a patient with Addison's. The kicking and screaming will simply require more of your non-existent adrenaline; you'll only kick and scream your way out of your body, faster. Right now, practice relaxing techniques on a regular basis. Put on loud rock music or rap or country, whatever you most dislike, then lie back and DON'T go with the beat...form your own slower beat and float into your place of peace. Shut out the distractions. It defies everything that is a natural response, such as the desire to just jump up to rush over and shut off the damn noise, but rising above the noise is powerful. I love it when I see people who meditate and they must have solitude and peaceful surroundings so they can get into the "zone." Truthfully, I don't think that sitting next to trickling water with no interference is an admired form of meditation. That's just too dang easy. The real admiration I have is for people who can meditate in the middle of crazy chaos. Now, that's talent and control. Well, once you can find that "zone" in the midst of a raging battle, then you are a MASTER at meditation and self-control.

Let go of the fear. Let's face it, either you relax and give yourself a better chance at having a come-back or you relax and let go, with peace and beauty within. Even scary moments can be beautiful - it's just a matter or fine-tuning your perspective. Think of it this way, just as people must respond in a bear attack, to survive, they must go against all instinct and just stop. In the middle of their terror, they must play dead; they cannot move or the beast will see that slight movement and he will respond by eating the person alive. My survival technique is one can see the bear, but I feel him breathing down my neck (figuratively speaking) I embrace complete inner stillness. It's as if I already know, deep within my soul, that I must not show any emotion other than submission or the beast will pounce. Armed with this ability, I know that I have been blessed. My strong determination to submit completely during these times of outer-body panic is totally against my every day personality. I don't shy away from a good fight, but I have directly faced this insidious beast so many times already. I have discovered my own weapon for fighting the Addison's beast; for the moment, I relinquish the fight, then, I end up winning.

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