Saturday, January 29, 2011

#31 - Emotional Surges - Are We Connected?

When I was first diagnosed with Addison's/adrenal insufficiency, I remember the doctors discussing the "stress" factor with my family. Unfortunately, my diagnosis came after I had become critically ill. The day after I coded at the hospital, my brilliant cardiologist ran the right tests --- only because he put the puzzle pieces together and suspected Addison's. Very fortunate for me. I was medicated and began a "new" life with this disease.

However, after my endocrinology consults, I had been shocked to be given hugely different warnings. Most doctors said that this disease ONLY affects you after a there is a physiological stress such as a broken bone, surgery, a cold, an injury, etc., The general consensus was that an emotional stress did not warrant an increase in medication. Initially, I took this advice at face value. However, I soon understood that most doctors who are giving this advice are lacking critical EXPERIENCE with this disease --- as an individual and as a physician, and this truly hindered their advice-giving.

When I was 38, my mother lay six houses down from me in her bedroom, dying. I had been pulling long days, consecutively, and long nights. My body was worn down and my mental state was frayed. My mother, a brilliant woman with her Master's Degree in Education was lying before me unconscious with a DNR (Do Not Resuscitate) order posted in her room, in the hallway, on the front door of the house...the final moment was approaching. Reality of life and death was palpable. She was only 57 years old. Just four days previous to this, she had been able to even go to the bathroom on her own --- the downturn was fast and furious.

Hospice had come for their visits and offered to give physical help along with the awesome medications to ease her suffering, but we decided that our family had formed into a mini-army that would be by her side til the end. As kind as Hospice workers had been, no stranger would be caring for our mother in her last moments. The hands that offered compassionate care would be filled with historic love.

One evening, I walked past the six houses that separated me from my mother and I knew my body was falling into that Addisonian pit. I went to my drawer to pull out my Hydrocortisone and found four pills. A little alarm went off. Next, I headed for my "emergency stash" and found that my past weeks of mother dying had obviously constituted an "emergency." To make the bad timing worse, I had no refills. As a Kelsey Seybold patient, I knew that I would have to phone their on-call doctor for after-hours care so I could get a refill, especially because the weekend was approaching. That evening a doctor returned my call and I proceeded to tell him that I had Addison's Disease and was under tremendous emotional stress because my mother was expected to pass away at any moment, plus my medicine was down to no more than two days dosaging. He put me on hold for a moment, then returned to say curtly, "Addison's is in no way affected by emotional distress, so I cannot authorize an emergency refill."

This was my first serious experience with a physician not being COMPLETELY aware of the ramifications of how emotional stress impacts a person with an adrenal insufficiency. I wanted to sit and drill this dimwit with a few questions...Does stress affect a cardiac patient? Yes. Does stress impact a patient with Parkinsons, Multiple Sclerosis, Cancer, Stroke, etc.? Does the obvious have to be tattooed across his forehead? Emotions are PART OF OUR BODY. Emotions have an impact on the functioning of our body. Emotions can affect our immunity, our resistance. Emotions can directly affect our capability for healing. Emotions are part of the fuel behind every function of our body.

As I was growing up, my father wanted to prove a point to me. He hooked up a blood pressure cuff to his arm and told me to pay attention. As he sat in his recliner, he had me take a reading. He sat motionless, but I could see his eyes narrowing and his mouth pulling into a tight grimace --- the blood pressure reading was sky high, top number was 210. Then, he said, "I want you to see how I can control my blood pressure with my thoughts," and he sat in the same position but his eyes softened and his mouth relaxed, he took a deep breath and told me to retake the blood pressure. This time, the top number was 110. His heart-rate had also reduced dramatically, all in a matter of minutes. He told me that he wanted me to always remember how our thoughts, our actions and our emotions are tied to our health. Everything is connected. My burly father knew more than the whitecoat I spoke with years later.

Fortunately, my situation with my mother dying and me being nearly out of medication was handled by my local pharmacist. He knew the severity of my situation and gave me an emergency supply to last until I could get to the endocrinologist. The day after I spoke with the on-call physician, my mother died.

A couple of weeks later, when I saw the endocrinologist, he hung his head out of disgust and told me that his associate was clearly wrong. He begged his forgiveness because he said that most doctors do not even know the word "Addison's" much less the intricacies of how it is woven in our bodies. He explained that emotions do have a direct correlation to our disease and requires the same diligence as a chest cold would require.

During my recent meeting with a researcher in Houston, I was overwhelmed with a strong connection of understanding because he put this topic on the table. As an experienced medical professor, a holder of a Ph.D., and licensed for his various medical professional capacities, he explained how he has ALSO been a patient with adrenal insufficiency that resulted from a pituitary tumor --- starting back in 1995. The psychological connection to his bodily functions was thoroughly defined by him in a simple, yet profound way,
                                 "Our emotions affect our health, AND
                                      our health affects our emotions."

As I write future entries, I will be covering other very important topics regarding adrenal insufficiency/Addison's that are often not discussed. Your comments, thoughts and emails will only add to our journey. Every day I learn something new and I can say with solidity that meeting with this doctor has been above enlightening. When he first contacted me about his research, I conducted a few credential background checks, and then I straight-out asked him why he was doing this research. He gave me straight-forward response (para-phrased), "I was diagnosed with adrenal insufficiency and upon doing research, I was finding too little of it available and much of it to be incomplete, wrong or too narrow, especially in the mind-body connection." At first, I felt very sad that he has had such a brutal experience with this condition, his road was not easy. Then, I was thankful that he was using his diagnosis to make a difference.

It has taken me nearly ten years to discuss my condition and to openly share my personal experiences, mostly because this condition is so difficult to explain. To be in open discussions with people who are not limited by their own experiences is refreshing. I have discovered that the shameful feeling as if I am a walking health-disaster is something I am not alone in feeling. Sometimes a disease or condition selects you at random; this condition can be a sneaky fox. But, knowing that our emotions do deserve full acknowledgement as a piece of our health puzzle is powerful in itself. I recommend, on a personal level, that you pay attention to all that is going on in your life and discuss this general psychological mind-body connection with your own physician. Hopefully, he or she won't be antiquated in their thoughts. Bottom line: If they think that emotions do not have an impact on YOUR condition, YOUR body, or YOUR state of health, then show them how their limited capacity for cerebral functioning impacts their pocketbook. As the researcher here in Houston hopes, one day in the near future, the medical literature available to doctors will begin to reflect a true educated and experienced voice for those with adrenal insufficiency. It will clearly indicate that a patient with this condition may indeed need a proper stress dose for certain emotional stresses, again, the final solutions will have to be ascertained by the patient with self-dosing knowledge. Til then, stay in close touch with your body signals, especially if you're laid off from work, dealing with an unruly teenager, going through a divorce or whatever might be sending emotional surges through your delicately-balanced body.

My Family - A Blessing

Wednesday, January 19, 2011

#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