First, I want to make it clear, that I am not a doctor...Thank God. I am not a medical professional and this is a blog for creative writing and was started as a means to reach out to others with adrenal disorders so we can relate and draw strength from each other. All of us have very unique struggles, but if you are suffering with Addison's or Adrenal Insufficiency...you are not alone. Keep reaching out and letting others reach out to you. I've struggled with this area intensely, so I can give voice to it.
Even though I'm not a physician, I do have vast experience with Addison's, multiple surgeries, injuries, and illnesses over the past ten years that would have created huge obstacles for anyone let alone someone with adrenal issues. I am blessed to be alive. That will be on other blogs to be posted very soon. Having Addison's is not something to relish, but it is my path in life. If you have a medical condition...make sure to get medical help by seeing a doctor. But, support systems can and should be a part of your treatment because you have psychological aspects to adrenal conditions that are very unique and understood by very few. As for your physical health, for an endocrine disorder, it's usually great to see an Endocrinologist. Your own research, questioning and gut instinct might be pivotal to your health. With valid reasoning, I am PERSONALLY leery of physicians and cynical from my many experiences, but I also know that there are INCREDIBLE doctors out there who can expertly treat adrenal conditions. Currently, I have a few incredible doctors I visit regularly, but the "incredible" part followed years of trial and error. My interviewing skills have been honed over the past decade. This became a life-necessity.
Sidetip - a PERSONAL bit of advice I have that could be a great resource for finding an incredible doctor is to talk with the nurses. Value their opinion and they will value you. Nurses are our advocate. Make the best use of your time during doctor appointments. Getting your blood pressure taken? Start the friendly straight-forward conversation and ask, "If your life or your child's life were in danger...on a PERSONAL level...which doctor here would you most wish to see so you could better your chances of survival?" Make it clear that you are asking about their own PERSONAL preference, not professional guidance. Help get them off the hook by reassuring them of the mutual respect for privacy and for their valued personal opinion. Not sure about this route? Just so you know, it has served me well. Nurses can be your ally. You might be surprised at some of the answers you'll get - even if by agreed upon loud and clear signals - body language. Try to ask a few nurses so you can get more personal opinions to help with your decision. Another good tip, first make sure the nurse is not the doctor's wife.
Personally, in a way, after the past decade of experience with this condition...I am freer. I no longer hit the books to research this disease in detail; I did that for several years and am past that phase. The below information is my own imperfect summary of this condition. But, these days, I am hitting the emotional nail on the head as I tackle the personal traumas that any adrenal insufficiency battle creates. If you have minimal impact from your adrenal issues, that is great. Not everyone is so fortunate. Not all roads are smooth. My writing focus is now often about my body and mind in a non-technical way; about my family reactions to different phases in this disease, about changed friendships, daily adaptations and the elephant in the room some people will try to avoid seeing at all costs.
Becoming deathly ill and desperate for healing as you go from doctor to doctor is not easy. But, I know others are going through the same thing. I got a diagnosis nearly ten years ago in 2001; in my final hour of need, I was rescued. My writing is mainly an emotional release and a reach-out. After nearly a decade of not being ready to talk about my experiences, I am now sharing, with you.
As for the technical part of Addison's - here is the non-professional, yet highly experienced version of what Addison's means ----- and yes ----- this is the "short" version of a very complicated issue. Good luck my friends and let's always share our wisdom. If you have an easier way of explaining this detailed mess or want to share your own story, I encourage you to do so. Interaction between all of us is very important.
Be prepared...Addison's may also be referred to as Primary Addison's, Adrenal Insufficiency or Hypocortisolism. And don't be fooled by the terms Secondary Addison's or Secondary Adrenal Insufficiency because these are just as deadly as the "Primary" version. Every form of adrenal insufficiency is potentially life-threatening. All of these are to be taken seriously. I am sure I have omitted other defining terms. Please forgive me and educate me. If you are brave enough to tackle the below in your own search, I can relate and I say, "God Bless You" and help you find the answers you need. I won't lie; it is not an easy journey.
A normal person has two adrenal glands. Only two. Each gland is located above the each kidney. The adrenals are relatively small and each adrenal gland has two main structures.
The two structures within each adrenal gland are:
1) The Adrenal Cortex which is the outer perimeter of the adrenal gland, and
2) The Medulla which is the inner part, the center of the adrenal gland. Just remember, Medulla...Middle.
The Adrenal Medulla is the inner part/center part of the adrenal gland and is in charge of secreting epinephrine (also called "adrenaline"), Norephinephrine (also called noradrenaline) and a small amount of dopamine, collectively, these are called "Catecholamines." The medulla of the adrenal gland secretes these catecholamines - which are hormones released in response to stress. Adrenaline cannot be produced elsewhere in the body - it is a hormone that is only produced by the adrenal glands from the amino acids. That is partially why adrenal gland problems are so critical to your health.
Easier to understand, "Catecholamines" are the "Fight or Flight" hormones most of us had heard about. If you have Addison's disease or any kind of adrenal insufficiency, you are probably well aware of these hormones, even if you didn't know the actual word for them. You already understand. If you don't like human anatomy and physiology or any kind of biology, take a break and come back, I'll be waiting patiently.
The Adrenal Cortex is the outer perimeter for the adrenal gland. Here we have cortisol and aldosterone. It is critical to know that cortisol works in cooperation with epinephrine/adrenaline as a response to stress. But, the adrenal cortex doesn't only include production of aldosterone and cortisol; it's also a "secondary" site for Androgen (sex hormones) synthesis. However, many Addisonian's do not need replacement therapy for testosterone because even though the adrenals produce adrenaline/epinephrine and cortisol, etc., only in the adrenal glands, the sex hormones do NOT rely on the adrenal glands as the only site for their production. The adrenal cortex produce "supplementary" Androgens, so that is not a typical life-threatening area of concern with Addison's or adrenal insufficiency. You can have Addison's and still have plenty of testosterone. In fact, speaking for women, we have three areas of Androgen production, but you will not have another source of production for natural cortisol from the adrenal cortex to work with adrenaline/epinephrine, etc., as the adrenal glands are the only factory for those life-sustaining hormones.
Adrenaline literally means "on the kidney" and this word has Latin roots that I won't go into. Anyway, we desperately need adrenaline and its buddies for survival. Adrenaline and Epinephrine are interchangeable, chemically, they mean the same thing. In this respect, I hope you can understand my personal issue with this terminology...I do not use the word "epinephrine" because it simply reminds me of my brother's allergy to bees; I can't shake that mental image. But, we with Addison's are lacking Adrenaline and Cortisol participation. This is not good. So, even though the medical community actually prefers we use the word "epinephrine" over "adrenaline" to describe this particular hormone (back to the bees) I'd rather use the word "adrenaline" - same difference, my particular writing choice. But, remember, I did mention that cortisol and adrenaline/epinephrine must work in cooperation for a proper stress response. Onward...I'm not finished with my "Brain dump." The information swirls around.
An "Adrenaline Dump" is how ordinary people refer to the body’s natural stress response. This term refers to a collective hormone release and amazing body feats. Since I am from Texas, I'll use this example...If you have a raging bull charging your direction and if you have good sense to ponder the impending danger, you will likely have an adrenaline dump. It is your body's way of gathering heightened awareness to prepare for battle. An "adrenaline dump" is actually a cocktail of life-saving hormones and these provide your muscles with the extra UMPH to MOVE ALONG QUICKLY and to possibly FIGHT. After ten years of learning to greatly control this adrenaline dump response...I still remember this sensation. Years ago, my sweetheart and I would ride the Texas Cyclone at Astroworld - a rickety, wood roller-coaster that was fast, loud, and terrifying; those adrenaline dumps were awesome. Now...not so much.
That "Fight or Flight" stress response needs hormones, including adrenaline and cortisol to work. The body produces corticosteroids according to individual need, but they don't work alone. The adrenal glands have two structures for a reason...they work as a cohesive unit...in conjunction with the rest of the body and the brain. After all, hormone participation is a key concept. Getting too technical. So............these hormones must mix and mingle, they sometimes bump into one another and say, "Hey, You're it!! I'm passing the torch; your turn!" Therefore, if one of the hormones is slacking, the others will sometimes respond in kind. Worse kind of chain reaction --- No reaction.
Analogy: bacon has fat. You cannot have real bacon without real fat. I'm going all Emeril Lagasse on you now. Yes, in Texas, we cook with bacon fat. Back to the drudgery: You cannot have a real "Adrenaline dump" without special hormonal ingredients. Cortisol is a focus word, but not the entire book. If you don't have cortisol produced by the adrenal cortex, then you won't have a life-saving "adrenaline dump" that defines the "Fight or Flight" response...with insufficient cortisol production, you would only have the "Flight" side of the equation; there is no "Fight" available and you will require synthetic replacement.
Adrenal hormones, in combination, have a serious purpose which is to keep us functioning through stressful times with our body. These hormones are especially useful during an emergency because they increase our heart-rate to get the blood pumping; they increase our blood pressure to allow for all that extra blood pumping; they constrict our blood vessels to hopefully help us keep the blood pumping INSIDE our vessels; the hormone cocktail dilates our air passages to get the oxygen flowing; it gives us tunnel vision so we can focus with intensity; shuts down our hearing so we don't have outside distractions; slows digestion so our body can use that energy elsewhere and these hormones do a whole lot of other things that cannot be explained so easily.
Far down in my account, I must make very honorable mention of the hormone Aldosterone which is produced by the adrenal cortex - remember? This is the outer layer along the perimeter of the adrenal gland. The lack of this little hormone in my body threatened deadly havoc. This particular hormone is very critical to our existence because it also helps to control our blood pressure as well as salt and potassium levels. Sounds rather harmless, but don't try it at home. Aldosterone can be replaced with Florinef, but your body will go out of whack beyond description without aldosterone. Of course, most of the adrenal gland hormones are beyond critical to our existence. If they don't work properly, it is hopeful you will get a correct diagnosis and will then likely be put on medications for synthetic replacement for a lifetime. Thank God we do have researchers and doctors at our disposal. I only wish all doctors realized that they can be better doctors by not always SOUNDING like doctors. Does that make sense? Sometimes, especially when very ill, we need plain talk. Unfortunately, most of us are blind-sided.
As for cortisol - the amount you produce is controlled by another hormone called: Adreno-cortico-trophic-hormone = ACTH. This is part of the mix and mingle and bumping scenario with hormones. ACTH is made in the pituitary gland, just under the brain. If you need surgery on the pituitary, they usually go through the roof of the mouth or through the nose - hope that provides a decent geographical location. ACTH travels through the body's pipeline, better known as the "bloodstream" and it goes to the adrenal glands where it triggers the adrenal glands to make cortisol. Mix, mingle, and bump.
I am almost finished with this shallow, superficial, non-professional approach of providing layman’s wording for adrenal insufficiency. If you are afflicted, an ACTH Stimulation Test could confirm the diagnosis of Addison's. If you have Addison's, the ACTH stimulation test will show that you do not have a rise in blood cortisol following the injections. The stimulation test is an attempt to synthetically get a response from the adrenal glands. There are indepth values that go with the results, but that's going back into a technical side that I am now trying to move away from --- unsuccessfully as you can see. Within hours after I officially coded in the hospital, I had this ACTH Stimulation test. I had also had an A.M. Cortisol and aldosterone blood test among other tests too numerous to mention. And BINGO - we have a winner for the brilliant doctor who figured out my condition. A cardiologist. Finally.
With typical Addison's, usually, the adrenal cortex is affected and the medulla is ok. Weird. However, even with only the cortex of the adrenals affected, the participation for a natural response to stress is over. Adrenaline dumps are depleted. You'll now need medications to replace hormones that would've naturally been dumped into your bloodstream so you could survive daily living AND emergency stressors upon the body. There can be a multitude of reasons behind a person developing Addison's, but most often, it is caused by an auto-immune disorder. Often, the cause of your developing Addison's disease will remain a mystery.
If you have Addison's due to a suspected or confirmed auto-immune disorder, then, for some reason, your body began to see your adrenal cortex, the outer layer of the gland, as an enemy worthy of destruction. Since the adrenal cortex is mistakenly seen as a dangerous invader, the body's defense system sends out the sharp-shooting troops to attack and destroy. Little does the body system know, this onslaught is Friendly Fire. The body turns on itself in an effort to do misguided good. I am a product of internal friendly fire.
|August 2010. Genetics apparent in the hair & eyes.|
Ruff, Ruff. These are the sweet moments to savor.
Of course, my hubby & kids make life worthwhile as well!