Cushing’s Myths and Facts

⁉️ Myth: Even Though You Are Chronically Ill, You Should Have The Same Amount Of Energy Every Day…

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Myth: Even though you are chronically ill, you should have the same amount of energy every day. “You look SO good and you went to that party last month! Why can’t you come to MY party?!” When you say you are not well enough to do something, you are just making excuses. You could do it, just like you did that other thing; you are just choosing not to!

myth-busted

Fact: You may have heard me talk about “The Spoon Theory”. It was created by someone named Christine Miserandino, to explain the experience of someone with chronic illness in terms of using energy to live and to complete tasks every day. Though the myth assumes that one should have the same amount of energy all the time; the fact is that energy levels fluctuate and people who are chronically ill must make conscious decisions about what they can spend their energy on.

Christine Miserandino (2010) uses the spoon theory to answer the question, “What does it feel like to be sick?” The spoons serve as a symbol for resources available and energy spent to get through every moment of every day. Miserandino states that “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to”. Most people who get sick feel a loss of a life they once knew. When you are healthy, you expect to have a never ending supply of spoons. But, when you are not well, you need to count your spoons to keep track and you can never forget about it or take it for granted. Each task costs a spoon and each spoon is not to be taken for granted. Miserandino (2010) asks, “Do you know how many spoons people waste every day?”

Patients use the metaphor of a banking system. In this system, patients must make a withdrawal of a spoon every time they complete a task. Cushing’s and Adrenal Insufficiency patients talk about the “Cortisol Bank” metaphor. The concept is the same and the idea is that certain stressors and/or tasks cause one’s body to make a cortisol withdrawal from the body. Bad things happen when there is a cortisol deficit, meaning that there is not enough cortisol in the body for one to live everyday because of the amount of cortisol that has already been used up. If a person continues to draw from the bank on an account that is already negative, the situation can become worse and worse as each day passes.

Something needs to happen in order to start making appropriate deposits. This can include, taking more medication (stress dosing or an emergency shot), resting, getting adequate physical and emotional support and help, and saying “NO!”. Even when in a deficit, many patients have a difficult time saying “no” to an invitation to an event, completing a task, or engaging someone in a way that will use up more energy because of their fear of their loved one’s reactions. Much of the time, this fear is warranted because of the actual reactions they have received. Ever heard, “But you volunteered for the bake sale last week! You must be better! Why can’t you come to church this week?!”. You may have heard something similar.

It is important for loved ones to understand the amount of “spoons” it takes for a chronically ill person just to get through every single day. EVERYTHING costs spoons! The amount of spoons paid by each person varies from person to person. It all depends on that individual’s situation, body, level of illness, etc. What is common for all, though, is that spoons must be used and eventually those spoons run out. In order to avoid becoming sick or to recuperate from getting sick, the chronically ill patient must evaluate how he/she will use spoons and what tasks can be feasibly completed that day or week. Please understand that when the chronically ill patient says, “YES” to you; he/she is making a conscious choice to use up spoons to meet your need, request, or demand. Talking on the phone, going out to lunch, making dinner, coming to your event all required a sacrifice of another task that day or week. Your friend may have come to lunch with you but that required that she skipped washing the dishes that day or washing her hair, or is even giving up doing something important the next day. Instead of being angry at your friend, please consider why the request is denied at times.

spoons-mythsRefer to the attached picture. This is not an exact science but gives some idea of the spoon bank. If you have time, try doing this exercise: Lay out 8-12 physical spoons. As you complete certain tasks throughout the day, use this chart to subtract spoons from your pile.

Each and every thing requires a spoon. Taking a shower, washing your hair, cooking, cleaning, watching a movie, going out to lunch, working, writing this post (Ha)! When you are done with your day, notice how many spoons you have left. Observe your feelings after this exercise. You can even do it for a week. Lay out a certain amount of spoons for every day for seven days. If you go into a deficit, borrow spoons from the following day. However, if you do borrow spoons; you must take away a task that you WERE planning to originally do that day. Notice what happens and notice how you feel at the end of the week.

You can view “The Spoon Theory” in its entirety at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Can you think of any other tasks that are not on this chart? Help our friends who are doing the activity. List those tasks and assign how many spoons each task will require.
Spoon Bank
Get out of bed- 1 Spoon
Shower- 2 Spoons
Attend Special Event- 5 Spoons
Go out for Coffee- 4 Spoons
Drive- 4 Spoons
Make a Phone Call- 3 Spoons
Work- 5 spoons
Play Games-3 Spoons
Clean the House- 5 Spoons
Have a Meal- 2 Spoons
Walk the Dog- 4 Spoons
Study- 5 Spoons
Watch TV- 3 Spoons
Ironing- 5 Spoons
Exercise- 4 Spoons
Shopping- 4 Spoons
Read- 2 Spoons
Catch Public Transport- 4 Spoons
Cook- 4 Spoons

 

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⁉️ Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

MaryO Cushing's Myths and Facts , , , , , , ,

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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⁉️ Cushing’s Myths and Facts: “You should be all better by now!”

MaryO Cushing's Myths and Facts , , , ,

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

⁉️ Cushing’s Myths and Facts: “Vitamins and Natural Remedies can cure/heal Cushing’s”

MaryO Cushing's Myths and Facts , , , , , , ,

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”

Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!

Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis

Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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⁉️ Myths and Facts about Cushing’s: “Men1 and Men2 are the only genetic causes of Cushing’s”

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Myth: “Men1 and Men2 are the only genetic causes of Cushing’s”

myth-busted

FACT: This is a Myth. More current research has explored multiple etiologies of Cushing’s. It was once thought that heredity had no influence on the development of Cushing’s Syndrome/Disease and our knowledge was once limited in this sense. Researchers have done more work in terms of exploring genetic factors in the onset of this disease. *~Robin Ess (Cushing’s educator and advocate)

The following causes for Cushing’s have all been explored:

1. Men 1

2. Men2

3. FIPA

4. CAH/BAH

5. PRKAR1A(protein kinase,cAMP-dependent, regulatory, type I, ? gene)

http://www.medscape.org/viewarticle/564106_2

6.(PDE11A)

http://www.medscape.org/viewarticle/564106_4

http://www.medscape.org/viewarticle/564106_6

7.PRKACA

http://www.nature.com/nrendo/journal/v10/n8/pdf/nrendo.2014.89.pdf?WT.ec_id=NRENDO-201408

http://www.ncbi.nlm.nih.gov/pubmed/24700472

http://www.nature.com/ng/journal/v46/n6/full/ng.2956.html

https://www.genomeweb.com/sequencing/exome-sequencing-study-narrows-new-cushings-syndrome-gene-culprit

8.ARMC5

http://www.sciencedaily.com/releases/2014/10/141013090455.htm

http://www.nejm.org/doi/full/10.1056/NEJMoa1304603

⁉️ Myths and Facts about Cushing’s: UFC’s are the Gold Standard for Cushing’s testing

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Myth: UFC’s are the Gold Standard for Cushing’s testing

myth-busted

Fact: UFC stands for Urinary Free Cortisol. In layman’s terms this test assesses cortisol by collecting urine for 24 hours. It was once thought that this was the gold standard and the end all and be all in terms of assessing Cushing’s in a patient. What we now know is that this is not necessarily true. Though this test is helpful in assessing for Cushing’s in some patients, not all patients have positive labs with this test, even if they DO, in fact, have Cushing’s.

There are various theories as to why. Cyclical Cushing’s patients also tend to report having a lower prevalence of positive UFCs in their test batteries.

Cushing’s experts understand that the most effective way to test for Cushing’s, especially in cases where it is suspected that the patient is cycling, is to administer multiple test measures across an extended period of time.

The following links may be helpful:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2978784/

Click to access LimitationsSC_UFC_dex_mildCS.pdf

http://survivethejourney.blogspot.com/2008/08/when-gold-standard-becomes-tarnished.html

 

Dr. Karen Thames has been sharing these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and on the Cushing’s Help message boards.

⁉️ Myth: “All Cushing’s patients have the exact same symptoms

MaryO Cushing's Awareness Challenge , , , ,

Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!

⁉️ Cushing’s Myths and Facts

MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge , , ,

 

Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!

⁉️ Myths and Facts about Cushing’s: “You should be all better by now!”

MaryO Uncategorized , , , ,

Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.

 

Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).

The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).

However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).

According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.

It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).

For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).

Here are some ideas for helping the chronically ill person and family:

• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are

• Make short visits to not overtire or over stimulate the patient

• Send a card or make a short phone call to the sick person

• Look for ways to help with young children

• Send a small gift

• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”

• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).

Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.

Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:

⁉️ Myths and Facts about Cushing’s: It is MY fault that I got Cushing’s…

MaryO Cushing's Awareness Challenge , , , , , , , , , ,

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!