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


  1. Last summer I was not well, I tried to implore to my endocrinologist that my quality of life was crap and I was having difficulty with my legs. He said "your labs are fine, try eating a banana" Six weeks later I'm in the ER having partial paralysis in my legs and arms. His suggestion was my potassium was low, even though my labs from the previous 2 years showed my potassium on the high end of "normal". I am now on my 5th endo!

    Negotiating the medical landscape with a rare disease is not an easy thing. Self advocation is imperative, and you can't feel shy about questioning your doctors.

    I've been on 50 mg HC since September. This is obviously a high dose, but my body has been under assault from POEMS Syndrome. I am pretty much on my own as far as trying to negotiate my dosage as I begin to recover. I've come down to 40 mg the last couple weeks, but my neuropathic pain has been much worse too. I am starting to wonder if its related to the lower HC dose? I simply don't know, and no doctor could tell me anything regarding this. It's a lonely walk. But, I know I don't walk alone.

    Hope you've been well, Lana.

    PS: You have a lovely family! :)

  2. Michael, you & I are too aware of rare conditions & the difficulty it causes in all aspects of life. I KNEW something was really wrong after a few of our communications because you were suffering so much still. As for your HC dosage, I've had long periods of being on high doses (up to 70 per day long term) because of other complications. Even 5mg can make a difference when you are battling something, you are doing the BEST job of it. Keep listening to your body. Keep laying it on the line to your doctors because sometimes they just need to have that eye contact with the "I truly need you to do your LIFE, my family, my quality of life DEPENDS on you doing your best to dig deep & to go beyond textbook answers."

    I've been having battles lately, so I feel for you. I just got a not-so-great CT Scan this past Monday & haven't even been able to write about it. You know how it goes, sometimes we have to absorb it before we can move forward.

    As for answers from your doctors; POEMS seems so rare that you probably will get a lot of shoulder shrugs. Just make sure you get your script for HC written for a higher daily dose to cover your additional stress doses. I actually get mine written regularly for at least 15mg per day more than I need so it will be on hand automatically for any day it is needed.

    How is radiation? Did the PET Scan see any other lesions? I'd like to know how you feel, overall, since treatment. I hope you are keeping an account of it all because you will be a reference point/gold mine to other POEMS patients because of its rarity.

    I'll try to post this on your blog too. As for your condition, yes, it's gotten a bit lonelier because of its rarity, no doubt. It's like speaking a language that no one else you've ever known can speak. So much in this world we must do alone, but your sharing is important. Keep being real about it & know that there are others out there who can definitely relate. Your experiences help others, especially when they hear your music. Thanks for the compliment about my family! I'm proud of my Southern gals, the oldest standing next to me, in red, graduated from Texas A&M last year with her Biology degree & my youngest is entering her junior year in college, Child Life Specialist (because she was so affected by having a mother who had bouts of being seriously/critically ill). My husband is pretty awesome as well. Those special moments with family help get your through the rough patches. Til next time...Lana.

  3. Hi Lana,
    I too was told that emotional stress did not warrant stress dosing. I am currently on Endo #'s 5+6 ( I currently have 2 endo's due to some hormonal testing I needed done that one of my endo's have not had much experience in dealing with but she has been very helpful with ordering plenty of steroids and other meds for me so I am keeping her also) I left the endo within the first year due to the fact that she said no stress dosing due to emotional stresses and I didn't need an emergency kit, if I was sick enough to need a 100mg shot of Solu-Cortef then I needed to be in the hospital. And she was suppose to be an "adrenal expert"---NOT
    I wish you both spoon filled days

  4. Dannielle, I think we've all seen our share of doctors who are not able to do any kind of thinking beyond a textbook. This disease is still rare enough to give inaccurate and incomplete information. Just like asthma patients were told, years and years ago that asthma was basically a psych problem and the doctors later discovered how very wrong they were about it as they became educated about environmental causes, but change with an open mind to common sense effects do not come easily to doctors who lack such wisdom. Fortunately, I've also been under the treatment of a doctor who says to pay just as much attention to your psychological state of health as your physical state of health...both impact our condition. Don't take chances. Old medical literature is just that OLD AND OUTDATED. Anyway, I am glad you are working to be your own best advocate! Keep it up! Lana C.


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