Myth: It is MY fault that I got Cushing’s…

Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! If I would have just done XYZ, this would not be happening to me!”

myth-busted

Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth. We NEED to dispel this myth my friends! Patients themselves assume responsibility, accountability, and self blame for becoming ill.

To compound all of that, patients are often told by loved ones, family, and sometimes even their churches or other supports that there is something that THEY could be doing or haven’t done that has caused their declining health. “If you would just follow that raw food diet, then all of your symptoms would go away”, “Juicing is the answer! I told you to juice and you wouldn’t get those tumors!”, Sometimes, you are told that if you would just pray harder or have greater faith, then there is no way that you would be sick right now. And my absolute favorite, “you are just too obsessed with being sick and having Cushing’s!  Stop thinking that you have it and it will go away!”.

Now, don’t get me wrong, I find value in “positive thinking” and affirming health, wealth, and all kinds of great things. This helps build up strength and personally keeps me motivated, especially during the times that I feel like absolutely throwing in the towel and giving up!

However, I am NOT the reason and YOU are not the reason for this war with this dreadful disease. What many people don’t understand is how tenacious, brave, courageous, and INDOMITABLE you are! Cushing’s patients do not just get surgery and then everything is magically OK.

Many patients have to go through multiple surgeries, sometimes radiation, sometimes years of testing to find the ultimate source of the disease, even after having several organs messed with. Even after patients obtain their “cure”, they are faced with residual and lingering negative effects of the illness, other hormone dysregulation issues, and the anxiety and fear of a recurrence which is based in absolute reality.

There are people, like myself, who are in remission from Cushing’s, BUT we now have Addison’s Disease/Adrenal Insufficiency as a result of removing vital organs in order to save our lives from Cushing’s. So, are we to think that Adrenal Insufficiency is ALSO our faults every time we near death after an adrenal crisis?! NO! NO! NO!

This is NOT your fault! This is NOT your doing! STOP blaming yourself! The best you can do is to FIGHT! Take an empowered stance by saying “NO” to those who won’t listen. Say “NO” to those who project blame onto you and tell you that this is just a “fat person’s excuse to stay fat”. You are not just a “fat person”! YOU are an amazing person who is fighting for your life!

Let me be clear that this blaming is common and we all do it. In my “5 stages of Loss” series on Youtube; I address the “Bargaining” stage of loss, in which we assume responsibility for getting sick or even for getting better.

Everyone should watch this to understand why and how we do this:

Remember, you are a survivor! YOU are Indomitable!!! This is NOT your fault! You WILL overcome!

Remaining calm = Reducing illness

Have you ever noticed that when you are “stressed” you can feel either emotionally/physically depleted or energized?  When our body is under stress the brain responds by producing epheniphrine or adrenaline, sending signals to our adrenal glands, increasing the rate at which our heart beats while releasing oxygen to our muscles.  The long term response to this process produces cortisol (aka the stress hormone) facilitating the release of energy throughout our body.  However, when our body isn’t properly balanced these hormones can wreak havoc on our wellness possibly resulting in one of three conditions:  Cushing’s syndrome, Cushing’s disease or Addison’s disease.

adrenal-glandsThe actual Adrenal glands sit physically atop both kidneys, taking on a triangular shape and a roundish rectangular type shape.  These glands are responsible for our sex hormones and cortisol, helping us respond to stress amongst other functions.  When our body is under stress, physically and/or nutritionally, it responds one of two ways:  Produces too much or too little of the cortisol hormone.  Our Adrenal glands also contribute to regulating our blood sugar, blood pressure, salt and water.

Adrenal disorders can cause our body to make too much or not enough of these hormones, bringing about adrenal gland related syndromes and disease.  Cushing’s syndrome results from our body making too much versus Addison’s disease produces too little.

Cushing’s syndrome vs. Cushing’s disease

Glucocorticoids (naturally produced in our body or received through medicine) are groups of corticosteroids (cortisol or dexamethasone) involved in metabolizing our carbohydrate and protein.  When taken synthetically (i.e. treatment of allergies, skin problems, and respiratory problems) or over-produced naturally, the side effects can result in “Cushing’s syndrome”.

Cushing’s syndrome can occur one of two ways:  Endogenous or Exogenous.  Endogenous is caused by the body (usually through tumors).  Exogenous is caused by medication.  In both cases, the body produces too much cortisol.

Symptoms: Severe fatigue/muscle weakness, high blood sugar and high blood pressure, upper body obesity, thin arms/legs, bruising easily

Treatment:  The cure and treatment for Cushing’s disease can come through medicine, surgery, or by lowering the dosage of your current synthetic hormone treatment.  Cushing’s syndrome can be cured.

Cushing’s disease is the most common form of endogenous Cushing’s syndrome and is likely treatable.  Caused by a tumor in the pituitary gland secreting too much Adrenocorticotropic hormone (ACTH), this type of tumor does not spread and can be removed through surgery.

Nutrition:  See a nutritionist or dietician for your condition.  Mostly, avoid excess sodium.  High blood sugar (hyperglycemia) and high blood pressure can easily occur with this condition.  Bone loss density is common with this condition, so be extra aware of your calcium (800 – 1200 mg per day, based upon age) and Vitamin D intake (5mcg from age 0-50, increasing up to 10 mcg 50-71, and 15 mcg after 71).  Eating healthy, balanced and whole food (versus processed) is extremely important.

(Resource:  http://www.aboutcushings.com/understanding-cushings-disease/causes-and-differences.jsp)

Addison’s disease

Opposite from Cushing’s syndrome, Addison’s disease doesn’t make “enough” of the sex hormones and cortisol.  The result of this disease causes our immune system to attack our tissue, damaging our adrenal glands.

Symptoms:  Weight loss, muscle weakness, increasingly worse fatigue, low blood pressure and patchy or dark skin.

Treatment:  If left untreated, the condition can be fatal.  Lifetime hormone treatment is usually required. Addison disease patients should always carry medical/emergency ID on them, listing their medication, dosage and disease

Lab tests can confirm that you have Addison’s disease. If you don’t treat it, it can be fatal. You will need to take hormone pills for the rest of your life. If you have Addison’s disease, you should carry an emergency ID. It should say that you have the disease, list your medicines and say how much you need in an emergency.”

(Ref: http://www.nlm.nih.gov/medlineplus/cushingssyndrome.html, NIH: National Institute of Neurological Disorders and Stroke)                                                                                                                                                                                                                                        Learning how to balance our stress-filled lives is extremely important to our overall health.  Healthy nutrition always contributes benefits to our overall wellness.  We can overwhelm our endocrine system by simply not eating nutritionally.  Understanding that “Food is a drug” is vitally important to how we help our body naturally heal itself.  The above two conditions are the result of our body not handling the stress we are putting it through, causing our body to producing too much or too little of the sex hormones and cortisol.

Unless we first address what we can do naturally through nutrition, the medicine we consume will only do so much in helping our body heal completely.  You simply cannot continue doing the same thing over and over again, expecting the medicine to do all the work.  Some diseases are brought upon us through our environment (emotionally as well as physically) as well as our diet/nutrition.  Reviewing our entire wellness is always wisdom whenever we’re diagnosed with anything.

Certainly listen to your doctor and their advice.  But also ask your doctor to refer you to a nutritionist or clinical/registered dietician for a complete evaluation that includes a review of your nutritional diet/wellness.  Too often we reach for a pill or a procedure to “fix” our health problems, ignoring what we should be doing on our own to help our body heal.  Medical intervention is the result of providing our body with what it cannot produce on its own.  Nutrition should always be the “natural” medicine we take, as well as what we might need through prescribed medication.

Adapted from (Spelling errors corrected) http://hamptonroads.com/2013/10/remaining-calm-reducing-illness

Bio Categories

Chemical structure of cortisol.

Chemical structure of cortisol. (Photo credit: Wikipedia)

List of all the categories from Cushing’s Bios

Doctor’s Notes: Part 2, Adrenal

The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

Acronyms or abbreviations for “Adrenal”

AD: adrenal vein
AG: adrenal gland
AdNA: adrenal gland
AC: adrenal cortex
adc: adrenal cortex
ADM: adrenal medulla
AA: adrenal adenoma
AF: adrenal failure
AM: adrenal medulla
AA: adrenal androgen
PA: pituitary-adrenal
AA: adrenal androgens
AAs: adrenal androgens
AM: adrenal medullary
LAV: left adrenal vein
AH: adrenal hypoplasia
AH: adrenal hemorrhage
AE: adrenal enucleation
AG: adrenal glomerulosa
AH: adrenal hyperplasia
HFA: human fetal adrenal
BAC: bovine adrenal cells
ADM: adrenal demedullation
AI: adrenal incidentaloma
AI: adrenal insufficiency
AVS: adrenal vein sampling
AI: adrenal incidentalomas
BAM: Bovine Adrenal Medulla
PAA: pituitary-adrenal axis
AMQD: Adrenal Move Quick Draw
AVS: Adrenal venous sampling
ach: adrenal cortical hormone
ACCs: adrenal chromaffin cells
AZF: adrenal zona fasciculata
BAM: Bovine adrenal medullary
PAL: Primary adrenal lymphoma
Ad4BP: Adrenal 4-binding protein
BAC: bovine adrenal chromaffin
ACC: adrenal cortical carcinoma
acca: adrenal cortical carcinoma
BAG: bovine adrenal glomerulosa
SAM: sympatho-adrenal-medullary
NAH: neonatal adrenal hemorrhage
PAH: primary adrenal hyperplasia
AHC: adrenal hypoplasia congenita
ACA: adrenal cortex autoantibodies
ACTH: adrenal corticotropic hormone
BAH: bilateral adrenal hyperplasia
CAH: congenital adrenal hypoplasia
HPA: hypothalamo-pituitary-adrenal
PAI: primary adrenal insufficiency
SAM: sympathetic-adrenal medullary
cah: congenital adrenal hyperplasia
HPA: hypothalamic-pituitary-adrenal
IAH: idiopathic adrenal hyperplasia
ACTH: adrenal corticotrophic hormone
ahc: adrenal hypoplasia, congenital
BAMC: bovine adrenal medullary cells
H-P-A: hypothalamic-pituitary-adrenal
HPA: hypothalamic-adrenal-pituitary
HPA: hypothalamus-pituitary-adrenal
HPAA: hypothalamic-pituitary-adrenal
IHA: idiopathic adrenal hyperplasia
LOAH: late-onset adrenal hyperplasia
NCAH: nonclassic adrenal hyperplasia
UAH: unilateral adrenal hyperplasia
BACC: bovine adrenal chromaffin cells
BACCs: bovine adrenal chromaffin cells
BCC: Bovine adrenal chromaffin cells
CAH: congenital adrenal hyperplasias
HHA: hypothalamo-hypophyseal-adrenal
BAC: bovine adrenal fasciculata cells
ARH: adrenal regeneration hypertension
HPAA: hypothalamo-pituitary-adrenal axis
ASNA: adrenal sympathetic nerve activity
HPA: hypothalamo-pituitary-adrenal axis
BAMC: bovine adrenal medullary chromaffin
FAH: Functional adrenal hyperandrogenism
HPA: hypothalamic-pituitary-adrenal axis
HPA-axis: hypothalamic-pituitary-adrenal axis
HPAA: hypothalamic-pituitary-adrenal axis
HPAA: hypothalamus-pituitary-adrenal axis
AASH: adrenal androgen stimulating hormone
BAME: bovine adrenal medullary endothelial
HPA: hypothalamus-pituitary-adrenal gland
NADF: National Adrenal Diseases Foundation
PAMC: porcine adrenal medullary chromaffin
CLAH: congenital lipoid adrenal hyperplasia
APA: aldosterone-producing adrenal adenoma
HPA: hypothalamic-pituitary-adrenal system
HPAT: hypothalamus-pituitary-adrenal-thymus
LHPA: limbic-hypothalamic-pituitary-adrenal
PCAI: primary chronic adrenal insufficiency
HHAS: hypothalamo-hypophyseal-adrenal system
HPA: hypothalamo-pituitary-adrenal cortical
HPA: hypothalamic-pituitary-adrenal cortical
RAMEC: rat adrenal medullary endothelial cells
CVAH: congenital virilizing adrenal hyperplasia
CAH: congenital virilizing adrenal hyperplasia
LOCAH: late-onset congenital adrenal hyperplasia
LHPA: limbic-hypothalamic-pituitary-adrenal axis
NC-CAH: non-classical congenital adrenal hyperplasia
AIMAH: ACTH-independent bilateral macronodular adrenal
pre-ASNA: preganglionic adrenal sympathetic nerve activity
AIMAH: ACTH-independent macronodular adrenal hyperplasia
CAHSA: Congenital Adrenal Hyperplasia Support Association
AIMAH: ACTH-independent bilateral macronodular adrenal hyperplasia

Have You Gone to the ER With an Adrenal Crisis?

This Survey is to gather information for the Adrenal Insufficiency Awareness Organization’s grant project to create educational materials for ER personnel.

The survey is for those of you who have been to the ER during an impending or full blown Adrenal Crisis. (you may fill it out for a child or yourself)

Your help is appreciated!

At the end of the survey you will have the chance to enter for a chance to win an Adrenal Insufficiency Awareness Pin.

https://www.surveymonkey.com/s/ERcare