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!

#1 ~ Cushing’s Myths and Facts

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

myth-busted

Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non experts tend to not test accurately and adequately for Cushing’s.

With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html

* Dr. Karen Ternier Thames

Today in Lab History

Jokichi Takamine was a Japanese-American biochemist and industrialist, born Nov. 3, 1854, who isolated the hormone produced in the adrenal gland that causes the body to respond to emergencies. This chemical was adrenalin — now called epinephrine — from the suprarenal gland. It was the first pure hormone to be isolated from natural sources.

He applied for and received a U.S. patent on the substance, and went on to make a fortune with his marketing of Adrenalin. In fact, the product that he marketed was not pure epinephrine, but a mixture of the hormone and its sibling compound, norepinephrine, or noradrenaline. It is now made synthetically. He also found takadastase, and played a key role in the introduction of phosphate fertilizer along with various other manufacturing and chemical industries to Japan.

~~~~~

How_to_give_EpiPen

Epinephrine, an EpiPen or Auvi-Q/Allerject injection, should be given in the mid-anterior lateral thigh (not the outer thigh). We call this the EpiCenter of the thigh, and this video segment from the EpiCenter Medical (http://www.epicentermedical.com) online anaphylaxis first aid course has a thigh location graphic to help you pinpoint the most effective location for the injection.

Use late-night salivary cortisol to catch recurrent Cushing’s


AT ICE/ENDO 2014


CHICAGO – Late-night salivary cortisol exceeded normal limits in 10 women with recurrent Cushing’s disease a mean of 3.5 years after transsphenoidal surgery, but their urinary free cortisol remained in normal limits, according to a retrospective review from the Medical College of Wisconsin, Milwaukee.

That adds strength to the notion that late-night salivary cortisol (LNSC) catches recurrent Cushing’s that’s missed by urinary free cortisol, even though UFC remains a standard screening approach in some places.

The study is tiny and retrospective, but at the joint meeting of the International Congress of Endocrinology and the Endocrine Society, lead investigator Dr. Ty Carroll explained why the findings still matter, and also why two LNSC measurements are better than one.

Video: http://www.clinicalendocrinologynews.com/home/article/video-use-late-night-salivary-cortisol-to-catch-recurrent-cushings/d7fad98e9289f9402034e73455b7560c.html

Rare Disease Week, 2014

rare-disease-2014

You are invited to join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day (Week), February 25 – 28, 2013.  Below is an overview of the events, registration will be coming soon.

Tuesday, February 25th:
8:15 am – 4:30 pm Legislative Conference 
National Press Club, 529 14th Street NW, Washington, DC

5:30 pm – 9:30 pm 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception
Carnegie Institution of Science, 1530 P Street Northwest, Washington DC

Wednesday, February 26th:
7:00am -8:30 am Lobby Training Breakfast
Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC

9:00 am – 5 pm Capitol Hill Meetings with Members of Congress & Congressional Staff

Thursday, February 27th
9:00 am – 5 pm State Delegation Hill Meetings (Optional) Advocates drop by Congressional Offices and attend meetings on behalf of advocates who are too sick or unable to come to DC

TBD, Rare Disease Congressional Caucus Briefing

Friday, February 28th:
RDD@NIH Rare Disease Day at the National Institutes of Health – 2014 event information & registration coming soon

All events are free and open to the public, registration coming soon.

Hotel Room Block: Dupont Circle, on the Red Metro line:
Embassy Row Hotel2015 Massachusetts Ave, NW, Washington DC
$149/night single $169/night double + 14% DC Tax    Click Here to book your hotel ! or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block
Complimentary internet in guest rooms, Complimentary breakfast
There are a limited number of rooms available at the discounted rate.  Discounted rates expire on Monday, February 3rd.

Click Here to watch the video presentations from last year’s Legislative Conference 

If you can’t join us in DC, please stay tuned for ways to share your personal story with Congress.