Friday, January 20, 2017

Keep fighting until you get better

A few of my friends are in the battle of their lives. Convinced they have Cushing's, these patients have played the test-and-wait game, for a long, long time.  They can barely see themselves in this life that is focused just on the bare necessities (food, care for kids, our self care gets skipped) and SLEEP. A lot of sleep. All the times you can't go to sleep because of daytime duties and responsibilities and wide awake when it is actually time to go to sleep. Add doctors dragging their feet and you slowly to diagnosis and high cortisol to the mix. Cushie just want to give up!

 

In case you haven't read it lately, here are my moxie set of tips to steady your feet and get yourself diagnosed.



Tips to Steady your Feet & Get Diagnosed Quickly



http://cushingsmoxie.blogspot.com/2008/06/tips-to-steady-your-feet-and-get_04.html?m=1


I haven't changed one thing on that post in the nearly nine years since I wrote it. 


It pains me to see how relevant it is today-- patients still suffering too long and doctors too sure of their knowledge to admit the patient may have something rare. 


The world of information has changed since that 2008 post, too. I started to research cushing's on the internet in March 2007.  I didn't use Facebook back then. A simple google search resulted in more posts about dogs and horses than people. 

TRUE STORY!! 

(🐶 + 🐴) x info > 👩‍💻 


So be happy that information is available and keep fighting Cushing's with Moxie.

Tuesday, January 17, 2017

My friend Tami finally found help for Cushing's

http://content.freemanjournal.net/?p=527904.html


Daily Freeman Journal

A benefit is planned for Sunday at Trinity Lutheran Church to help offset medical expenses for a Webster City woman who is battling a rare condition.

About seven years ago, Tami Ambrose started to noticed that something just wasn't right. Her body started changing and multiple doctors were unable to pinpoint what was wrong. She started gaining weight despite living a busy life, working two jobs, raising two young sons and being very physically active. She had a hard time reconciling those symptoms with the fact that she always felt full of energy.

"Doctors told me I needed to eat better and exercise more to lose the weight," she said.

But in December 2014, she felt like something growing in her abdomen.

"I could literally feel something and it kept getting bigger and bigger," she said. She later learned that sensation was actually a nonmalignant mass. Again she found no answers from the medical community.

A friend suggested that she contact Dr. Reda Daher at the Van Diest Medical Center Clinic. She credits him with finding out what the answer to what she was experiencing – untreated Cushings Disease.

"He knew by looking at me right away what I had," she said. Ambrose said Daher tested her for the disease and confirmed the diagnosis. Ambrose said she believes that had he not found that diagnosis, her condition would have likely been fatal.

According to a National Institute of Health website, Cushing Disease is a condition in which the pituitary gland releases too much adrenocorticotropic hormone. Too much ACTH causes the adrenal glands to make too much cortisol. Cortisol is normally released during stressful situations, those "fight or flight" moments.

Symptoms of the Cushing's Disease include weight gain, high blood pressure, high cholesterol, high blood sugar, muscle weakness, backaches, skin changes and moon face – where the face becomes rounder and may look flushed, according to the website.

"My cortisol levels were so high," she said. "In a normal person, the level should be 5. My cortisol level was 16,000."

Ambrose said those extreme levels caused her blood pressure to skyrocket. She was sent to the University of Iowa Hospitals in Iowa City and also had some consultation with doctors from the Mayo Clinic.

The physicians found a tumor on her pituitary gland in her brain.

"Normally, (removing the tumor) is all they have to do to stop this," she said.

"People are usually diagnosed quickly and then receive treatment. But since mine was untreated for so long, my condition went way too far," said Ambrose.

Once her blood pressure and cortisol levels were low enough, Ambrose underwent a nine-hour surgery in Iowa City in April to remove her adrenal glands. In August, she'll undergo the surgery to address the pituitary gland tumor. The nonmalignant mass in the area between her stomach and lungs will also need to be removed.

The extremely high cortisol levels made her case very rare. So rare, in fact, that endocrinologists from around the U.S. and even internationally were interested in following her case and will be on hand for her upcoming surgery, she said.

"When I go back in August, a team endocrinologists from other countries are coming. They want to meet me," she said.

Ambrose said she feels better since her April surgery, but she's now on more medications than she's ever taken, including hormones. Ambrose also said her immune system has been destroyed, making her very susceptible to illnesses. That's something else she'll have to cope with for the rest of her life.

"When I asked the doctors when will I feel normal, they just say it's going to be a new normal," she said.

The busy single mom has been sidelined by the disease and unable to work. She and her mother have operated a beauty shop and she's also worked as a painter.

"I doubt I'll ever be able to paint again because my muscles have weakened," she said.

Her illness has been a big change for her two sons, 11 and 13, who were accustomed to seeing their mom always on the go.

She said her family, friends and members of Trinity Lutheran Church have stepped in to help her.

"They've all been very supportive," she said. "I'm grateful for them and for Dr. Daher and the staff at Van Diest Medical Center. They're just great."

The benefit on Sunday will be held from 11 a.m. to 1 p.m. and will feature a baked potato bar, salads, bars, coffee or lemonade. A freewill offering will be taken. A bake sale will also be held. Thrivent Hamilton County Chapter 31144 will match funds raised up to $3,000.



Saturday, December 31, 2016

Three year BLAnniversary



It's my BLAnniversary! Three years ago, I had my malfunctioning adrenal glands removed in an effort to cure myself of Cushing's disease. I underwent two unsuccessful pituitary surgeries, medication therapy with ketoconazole, a drug that lowers cortisol, for 15 months, before deciding to undergo what many doctors call "a surgery of last resort." Not exactly the words that make a patient feel warm and fuzzy, yet I moved forward like many of Cushing's friends did before me and after me, and I pursued a life free of excess cortisol. Big risk, big rewards?


In the last three years, I have had some good days and many bad days. I can't say that it has been easy. In fact, it has been very difficult.

It is not so important to me to recall all the details of the journey. For this New Year's wish, I choose to focus only on the fact that I educated myself and took care of myself enough to survive that past 1095.75 days. My only job now is to keep going, every day that comes my way, in hopes of spending many more days with my daughter and husband plus my lovely friends.

Happy New Year to all y'all.

Thursday, April 7, 2016

Cushing's Awareness Month: What You Have vs. What Doctors will Say You Have

What Doctors Will Claim You Have Instead of Cushing's, because Cushing's is too rare

  • Obesity (lose weight, lose symptoms)
  • Polycystic ovarian syndrome (PCOS)
  • Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
  • Back and muscle pain
  • Diabetes
  • Blurred vision, visual field loss, double vision
  • Chronic fatigue syndrome
  • Dry, oily, or sweaty skin
  • Impotence or infertility
  • Joint pain, joint/bone abnormalities
  • Migraines
  • Muscle weakness, carpal tunnel syndrome
  • Temporomandibular joint/TMJ/jaw joint pain
  • Thyroid imbalance or "slow metabolism"


What your symptoms really mean if doctors put them all together - CUSHING'S


  • Facial redness
  • Rounding of the face (moon face)
  • Unexplained weight gain around belly
  • Pink or purple stretch marks
  • Thicker or more visible body and facial hair
  • Acne
  • Muscle weakness (difficulty standing or climbing stair)
  • Extreme fatigue (no amount of sleep is enough)
  • Depression, anxiety and irritability
  • Pink, red or purple stretch marks along your abdomen, arms, or thighs
  • Thin and fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Bone thinning (osteopenia, osteoporosis), easily broken bones
  • Recurrent infections
  • Sleep disturbances, night sweats, awake at midnight or 4 am
  • High blood pressure
  • Diabetes mellitus
  • Irregular or absent menstrual periods in females
  • Clotting disorder



And whatever you do, be careful not to be labeled as a DIFFICULT PATIENT, because your likelihood of being misdiagnosed goes up to 42%!



So you say, How can I approach this "delicate genius' and expect to get help? Well, my best advice is to write down all your symptoms in a laundry list like the one above. Highlight the ones that your online research has linked to cortisol imbalance. Present the list of the doctor and simply say, "With the multitude of symptoms I face, I'd like your help in testing me for cortisol and other hormone-related imbalances. If they argue or ridicule you, that is a clear sign, a cue... Find a new doctor.


Wednesday, April 6, 2016

It's Cushing's and Adrenal Insufficiency Awareness Month!

Day 1: It's Cushing's and Adrenal Insufficiency Awareness Month

772,998 page views.

WOW!
2016 not 2015. Mistake from a Cushie Mind.

I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.

I look back at the 510 posts I have made, and I have mixed emotions.
  
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.

I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.

I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting. 


Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.  

  • I was too sick to type.
  • I was too disappointed to share.
  • I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
  • I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share. 

Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind.  In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle.  Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.

**************


This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.

My goal simply is to finish the awareness challenge, because there were years in the past when I just couldn't. I have no idea what I will articles, opinions, or stories I will share in the coming 30 days. I hope you stick around to see what happens!

Thursday, February 18, 2016

Wow! Updates to Addison's Owners Manual





Hi friends! I'm still alive and kicking!

I have so much exciting news to share with you, and I must share things one at a time. Here is today's gem.

I'm helping a friend prepare herself and family for her upcoming bilateral adrenalectomy (BLA) surgery in just six days. There is a lot of getting ready that must occur prior to ridding our bodies' of those pesky adrenal glands. 

The most comprehensive reading material I've found to help us sort out these details is the Addison's Disease Owners Manual, developed by a patient group in the U.K. Without a doubt, it is my go-to source for my questions post BLA (because I still haven't memorized it). Without hesitation, I share this resource with every Cushing's patient who must understand the complex process of replacing cortisol to stave off secondary adrenal insufficiency after pituitary surgery and primary adrenal insufficiency after removing both adrenal glands (BLA).

The indispensable document published in 2000 now has supplement pieces dated November 2015, addressing what the medical community and patients have shared in the last decade and a half. 

This is such good news that I'm writing this blog post at 3:00 am while lying flat on my back typing on my iPhone because I had to tell you about it right now, without delay!

Here is the link to see the original 2000 owners manual (officially called 
Living with Addison's disease  an owner's manual for individuals with the condition) and be sure not to miss the new 2015 documents that are now hyperlinked below that.


In the words of my dearest departed friend Kate, ONWARD.

Wednesday, November 11, 2015

Life as a Cushie

You know you are a Cushie when you turn off the car engine at the pharmacy drive thru because filling 12 prescriptions for a 90 day supply for hormone replacements is very confusing to the pharmaceutical techs.

Friday, September 4, 2015

PNA: Cushing's at 16

Copyright Robin and Pituitary Network Association, 2015.
I am thankful to read a Cushing's article in the latest Pituitary Network Association's newsletter. Anything we do to put the word out about Cushing's is good.  I also want to thank high school senior Robin for sharing her story in the article Cushing's at 16.  Every story puts a face to this horrible disease. The photos featured really let you see how Cushing's can change a person's physical appearance.

"Cushing's definitely made me the person I am today, and even though the experience was terrible, I am proud of who I am now." ~ Robin, 18 years old

We all can learn a thing or two about strength from Robin!

*~*~*~*~*~*~*~*~

I do wish that the PNA would have featured a story of someone who required multiple surgeries before getting better.  Highlighting patients who had one pituitary surgery and got their cure is not representative of the patients who experience Cushing's. I know far more people who required multiple surgeries than those who were cured by one.  In my post entitled Cushie Warriors, I begged those with a Cushie in their life to support them, as many of them required multiple surgeries and treatments and still may not have a cure. It seems odd when so much information is out there about how pituitary surgery cures a Cushie, and it was important to let the few that remain part of the Cushie's support system to know that their Cushie-who-can't-get-well is not the exception but the rule. When I collected that patient treatment information and posted over four years ago in April 2011, there were already 50 people on the list. Kinda high for a rare disease, right?  I have an updated list of Cushie Warriors that tops over 125. That sure is a lot of Cushies out there who are trying to get people to understand that we are really sick and we have to go through a lot of testing to be rediagnosed in order to have multiple surgeries. It would further understanding for the complexity of Cushing's treatment if a national organization like PNA could help us get those stories out.

Feel like talking and typing

It's been a long time since I felt up to updating. It's been on my mind lately, so I decided to pop in and say hi. I hope to find the energy to reorganize this blog and add lots of content.  Living with a chronic disease like Cushing's and now Addison's, cortisol is always on my mind.

I want to encourage anyone who wants to contact me to please do so!  

I continue to get emails from Cushies all over the world who are wondering if they too could have this strange disease that no one thinks they actually have. 

On the one hand, I am elated to know that my work over the last 8.5 years is still out here in cyberspace helping someone when they need answers. That part makes me smile. It is imperative in my heart and mind to give back to the Cushing's community in a sort of Pay It Forward that once you experience it, you understand. I got to where I am today by standing on the shoulders of all the Cushies before and along side of me.

You are a doctor. Have a heart.
On the other hand, it saddens me deeply to see that doctors and endocrinologists are still so behind the times.  I see patients being told the same nonsensical, knee-jerk things that I was told. So many patients are going through the same naysaying doctors that I did all that time ago. Why must there be so much suffering? 

In all the ways that we have made progress with educating patients about high cortisol, we still have failed miserably in protecting patients from doctors who don't know better, who haven't read the medical research, who won't stop for one moment to exhibit an ounce of medical curiosity that each patient deserves. While I understand that doctors see common ailments frequently, it should not short circuit their brains into a loop that never deviates from their every day practice in order to dig deeper for the endocrine patients who need more from them.

It's not our fault we are so extraordinary!

How are we gonna get the word out to these doctors? When will they start listening to patients who know their own bodies? When will doctors come to love the internet for all the ways we have embraced it in every other corner of their lives? Patients report to their doctors with information in hand, looking for it to be confirmed or ruled out. We are not asking for the entirety of our selves and lives to be ridiculed, nullified, humiliated, and dismissed. 

I call on all doctors and endocrinologists to lean in order to learn more about the less commonly seen endocrine diseases such as Cushing's and Addison's.

Let's put aside this notion that Cushing's is too rare to have. Listen. All diseases have at least one patient or there wouldn't be a disease, now would it? Rare or not, it is not the doctor's job to rule it out based on possibility alone, as they think it is impossible to have Cushing's. Doctors must rule it out with tests and imaging as well as concern and compassion. If we can add the later to the patient experience, we would all be much better off.


Wednesday, April 1, 2015

Day 1: Cushing's Awareness Month Bloggers Challenge


Cushing's Awareness Month:
Bloggers Challenge
Day 1

Here we are again on April 1st. I join my fellow Cushies in blogging for the 30 days of April in an effort to bring awareness to our disease, Cushing's.

On March 28, 2007, I first saw the word Cushing's while researching thyroid doctors in San Antonio, Texas. Within minutes, I knew the word applied to me. I diagnosed myself with a rare disease on the Internet. I could hardly believe it, and none of the doctors believed it.

These past eight years have been filled with some of the darkest moments of my life. At the time, I wondered if I could make it through the next five minutes. Somehow, I endured the medical challenges before me. I faced disappointment and delay. I have been dismissed and dismayed. I have been tenacious and stubborn in fighting for myself, for what is right.

I admit to being stubborn, refusing to give up the fight when I know the fight is important.

Recently, I have learned to make peace with my disease. No matter what anyone says, you don't get ill and make peace immediately. Peace and uncertainty don't mix. You can't face devastation and immediately say, "Oh well. I guess this is my new normal, and it stinks. There is nothing I can do about it." No no no. That is settling for less than you deserve.

Peace comes with accepting the dire consequences of your disease, facing and befriending death as well as life, and still choosing to walk that line every day with a full heart and the stubbornness that won't let you give up or let Cushing's win.

I strive for peace.

I am 15 months post op BLA, or bilateral adrenalectomy for those with a lot of time on their hands for extra words. 

Another year has gone by. Cortisol is as much a part of my life as ever. Instead of cursing pituitary tumors for high cortisol, I scramble to take my cortisol medicine replacements three times a day. The irony is not lost on me. 

In the coming days, I will tell you more about my life after BLA, and how I navigate this stressful world with no adrenal glands. It's not easy (hint: I take a lot of naps).

I hope that you will stay tuned and learn a little more about the nuances of these cortisol-based diseases of Cushing's (too much) and Addison's (zero). In order to survive, I must understand both.

Sincerely,
Melissa

Cushing's warrior and advocate. 
Pituitary surgery for Cushing's in 06/2009 unsuccessful. 
Pit surgery for Cushing's in 04/2011 unsuccessful. 
Took ketoconazole and suffered through adrenal insufficiency for 14 months. Drug banned in European Union. I stopped postponing my life and chose to get rid of high cortisol.
BLA 12/31/2013 successful. 
I'm fighting to get my life back, and I will win.


Sunday, March 15, 2015

After gaining 120 pounds in 1 year, rare diagnosis saves man's life

Cushing's was featured this morning on the Today Show's Medical Mysteries three-part series. 

Hooray for national exposure for Cushing's!


Donelle Trotman, a father in his 30s, suddenly and unexpectedly gained 100 pounds in a year as well as experiencing strange symptoms.

Donelle shares our desire to spread the word and increase patient awareness about his diagnosis. Read the story and watch the video to see yet another example of how devastating Cushing's can be.

We thank you, Donelle, in joining us as a Cushing's Crusader. We wish you all the best in your healing process. Please contact me if I can help you in any way. 

"There was no time to lose: Untreated, Cushing's is a fatal disease."

The tumor was no bigger than the size of the tip of my pen," Boockvar said. "And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable."

Monday, March 2, 2015

17 Things You'll Only Understand If You Have A Rare Disease

Hi. It is been a long time since I posted something. The road to recovery after years of battling Cushing's disease can be long and curvy. I've had three very rough months, and I'm finally coming out the other side of it. When I get a chance, I will relay those details to you here. For now, I'd like to share this little bit I found on BuzzFeed.

17 things you'll only understand if you have a rare disease.

http://www.buzzfeed.com/findacure/17-things-youll-only-understand-if-you-have-a-rar-1bze2

Sunday, January 25, 2015

Bilateral adrenalectomy for Cushing's disease

I would love to see the whole article because the abstract seems pretty basic.  However, the news is good. Bilateral adrenalectomy or BLA is a good option for patients. Doctors should present this surgery as an option to all patients. It should be our choice to make.
Bilateral adrenalectomy for Cushing's disease.

Author
Katznelson L1.
  • 1Departments of Medicine and Neurosurgery, Stanford University School of Medicine, 875 Blake Wilbur Dr MC 5826, Stanford, CA, 94305, USA, lkatznelson@stanford.edu.
Journal

Pituitary. 2015 Jan 8. [Epub ahead of print]
Abstract

PURPOSE: Review the indications, outcomes, and consequences of bilateral adrenalectomy (BLA) in patients with Cushing's disease.
METHODS: A literature review was performed.
RESULTS: The primary therapy for Cushing's disease is surgery, with medical therapy and radiation therapy relegated to an adjuvant role. BLA is indicated in cases of persistent disease following pituitary surgery or in situations where rapid normalization of hypercortisolism is required. When performed via the laparoscopic approach, BLA is associated with a significantly reduced morbidity compared to the traditional, open approach. Following BLA, patients are at risk for adrenal crisis and the concern of Nelson's syndrome. However, BLA leads to a rapid resolution of the signs and symptoms of CS and leads to an improved long-term quality of life.
CONCLUSION: BLA should be considered in the treatment algorithm for patients with persistent CD after failed pituitary surgery, especially in patients who have severe consequences of hypercortisolism or desire pregnancy.

Friday, January 23, 2015

Seeing is Believing

7T MRI machines! A patient said the Cleveland Clinic got one in 2013. Wonder where else? These stronger magnet machines have existed for research but not clinical used. Finally, our community to get proper imaging for our disease. It's not our fault the pituitary gland is the size of a pea!

http://www.ncbi.nlm.nih.gov/m/pubmed/24871334/

Monday, December 22, 2014

High rates of adrenal crisis seen in patients with chronicinsufficiency | Healio Mobile

Who ends up going through adrenal crises? Can emotional stress trigger a crisis? Doctors insist it is not possible and advise us to rarely adjust our steroid replacement upwards in times of stress, especially emotional.

I'm please to see this recent article from December 2014 that addresses both questions. And yes, emotional stress can lead to adrenal crisis!!  Just like we Cushies, who adjust our medication daily to keep up with our lives, said. 


High rates of adrenal crisis seen in patients with chronic insufficiency

  • December 8, 2014
Adrenal crisis occurs in a large proportion of patients with chronic adrenal insufficiency, even if they are educated about managing the disease, according to research published in TheJournal of Clinical Endocrinology & Metabolism.
Deaths associated with adrenal crisis occurred in approximately 6% of cases, emphasizing the need for improved management of the life-threatening complication in patients with chronic adrenal insufficiency, German researchers wrote.
"Using for the first time a prospective approach, our study provides unequivocal evidence of a high incidence of [adrenal crisis] in patients with chronic adrenal insufficiency receiving standard replacement therapy," the researchers wrote.
Stefanie Hahner, MD, of the University of Wuerzburg, and colleagues recruited 423 patients with adrenal insufficiency (primary adrenal insufficiency, n=221; secondary adrenal insufficiency, n=202) and followed them for 2 years.
At baseline and every 6 months thereafter, patients were assessed through general questionnaire. Patients received detailed written instructions on glucocorticoid dose adaptation during stress at the outset of the study; those reporting adrenal crisis were contacted by phone.
Entire data sets were available for 364 patients (86%); 64 cases of adrenal crisis during 767.5 patient-years were documented (8.3 crises/100 patient-years).
Gastrointestinal infection, fever and emotional stress accounted for most precipitating causes (20%, respectively); other stressful events — major pain, surgery, strenuous physical activity, heat and pregnancy — or unexplained sudden onset of adrenal crisis also were documented (7%).
Patients with previous adrenal crisis were at higher risk (OR=2.85; 95% CI, 1.5-5.5); no further risk factors were identified.
During follow-up, 10 patients died, and four of these deaths were associated with adrenal crisis (0.5 adrenal crisis-related deaths/100 patient-years).
"Risk factor analysis has limited potential to identify patients at risk for [adrenal crisis], and education in glucocorticoid adjustments for stressful events will not obviate the occasional need for parenteral hydrocortisone to treat impending [adrenal crisis]," the researchers summarized. "Advances in comprehensive patient education including self-administration of parenteral hydrocortisone will be crucial to eliminate death from [adrenal crisis]."
Disclosure: This work was supported by the Else Kröner Fresenius Foundation project grant and the Federal Ministry of Education and Research.

NJ Gets Solu-Cortef on Ambulances

From the News Items and Research section of MaryO's Cushing's Help site:


The New Jersey Department of Health passed a waiver in October of last year that allows ambulances to carry Solu-Cortef, for the purposes of treating an adrenal crisis. As a result, New Jersey ambulances can be better prepared to treat adrenal insufficiency.  This news was brought to NADF by Karen Fountain of the CARES Foundation, who has been helping push state health directors to accept protocols to help treat adrenal insufficient patients during an emergency.  Adrenal insufficient people in New Jersey should contact their local EMS to make them aware of the waiver, and encourage them to carry Solu-Cortef in their ambulances. The hope is that other states, and eventually the entire country and beyond, will start having their ambulances carry the needed medication to treat adrenal crisis. http://www.nadf.us



Tumors: malignant v. benign

Both types of tumors should be feared and their patients revered.

Tuesday, December 2, 2014

My Story with Truth and Honesty

I love family and I enjoy genealogy. Recently, I found a cousin Dorotea in another country on Facebook. Seeing a post, she asked, are u sick?

Well, what do I say? That is a long and complicated answer. I have been sick for decades. How do retell that long story? How much does she want to know? How much should I drop in the lap of an unsuspecting cousin?

Right that moment, I began to tap out a reply on my iPhone. I just wrote and wrote. I guess you tell your story by just spitting it all out. You just tell the whole thing -- without shame, without embarrassment. To know me is to know the story of my life. It is long and complicated but it is important. I am important. Sick or well, I am important.

I don't want sympathy. I don't need pity.

I only want compassion that is given freely to any other human. What about the ones you love as friends or family?! I only want the compassion that I give to be returned. I don't like Cushing's. I hate it, in fact. However, I know I love my life with true intentions. I give compassion more freely now that I have lived this life. I want people to not be afraid of me and to stop avoiding me because they don't understand my disease or my life now. For those reasons, I told my story with truth and honesty.

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I had two tumors on a part of my brain called the pituitary. It hangs below the brain and controls all hormones or chemicals in the body. It is called the master gland. Well, I was very sick for at least a decade and didn't know why. In April 2007, I found the disease Cushing's on the computer. I read and read. I cried. Instantly, I knew I had this disease. So for the next seven years, I have been testing for diagnosis and re-diagnosis to convince the doctors and surgeons I indeed had this super rare disease where the pituitary hormone ACTH works with the hormone cortisol from the adrenal gland to respond to stress in a loop. We know now that Cushing's is not as rare but rarely diagnosed. I had my first pituitary brain surgery in June 2009. The neurosurgeon went through my nose to the center of my head where the pituitary sits. The tumor was removed but I kept producing the hormone cortisol in excess, and that hurt all my organs and kept me very sick. I tested again. I sought help from a Cushing's specialist in Los Angeles, CA after many friends online finally got help from him. My second pituitary brain surgery was in April 2011. Again, tumor and extra cells under the pituitary were removed, but I still felt sick and was not cured. I tested again to confirm cortisol excess in my body. Indeed, I still had Cushing's and my results kept getting higher each time I tested. In August 2012, I tried a medication ketoconazole to lower my cortisol. That did the job but it pushed the cortisol I needed to live every day too low, and I was bedridden and could not wake up during the day. I had to take Ritalin or a stimulant in the am in order to counter the effects of lowering my cortisol at night which left me little cortisol to get through the day. It was a daily struggle to take care of myself and my small child at home. Cooking, cleaning, and self care were impossible. I used every bit of energy to care for my child and I had little left to do anything else. I struggled with this every day until October 2013. I had enough. The Food & Drug Administration (FDA) put limitations on long-term use of Ketoconazole due to the prevalence of liver damage. The drug had already been outlawed in the European Union. I waited as long as I could but I couldn't wait any longer. Cortisol was destroying my life and my body. I began testing for excess cortisol in early November 2013, and my cortisol levels in urine, blood and saliva were the highest I had ever had and definitely proved that my body was flooded with cortisol. It was time to end cortisol production once and for all. On New Years Eve 2013, I had a bilateral adrenalectomy or BLA, the removal of both adrenal glands that produce cortisol. While this fixed my Cushing's disease, it gave me Addison's disease. I don't produce excess cortisol. Now I produce no cortisol. The body needs cortisol! You make it and don't even know about it! I will take medication daily for the rest of my life to replace the hormones not made by my damaged pituitary gland. I take medication to replace the hormones my adrenal glands make. If I forget these adrenal medications, I could die within 24 hours. The body must have cortisol to function. I must take my meds daily and at the same times. I have struggled hourly and daily to find the right amount of medication that matches my body's needs. I get blood tests often to check my hormone levels. It has been very difficult for me, my husband, and my young daughter, and even my parents who come from out of state to help when they can by staying a few weeks to a month to help my family with the daily things I can no longer do because of the damage that Cushing's and high cortisol has done. Then and now, I suffer from muscle weakness all over my body, bone pain, back pain, extreme fatigue, osteopenia, anxiety, depression and other mental disturbances, insomnia, and other things I can't even remember I suffer from because my brain is always foggy.

What I know for sure is that I am a fighter. I will continue to fight for myself and my family who supports me daily with hugs, love, and laughs. I am an advocate to help people get diagnosis and treatment sooner. I have maintained a blog since 2008 at http://cushingsmoxie.blogspot.com because back in those days, an internet search for Cushing's produced more results for dogs and horses than humans. Well, the blog is a success with over 600,000 hits total. Many patients have contacted me through the years, and we have gotten them to diagnosis and surgical treatment. I speak to hundreds of patients a week to answer questions about testing, surgery, and surviving a life and body flooded with cortisol. They learn from me and I learn from them. This disease is very complex, very nuanced. The story is different but the damage is the same. As patients, we take care of one another. We provide a safety net where none existed before. We are ill but united. As I move forward every day, I know I am doing my best. I take a set amount of cortisol and aldosterone replacement daily. If I get stressed, my body uses up that set amount and my body has no cortisol to run basic body functions. Therefore, I avoid stress at every turn. I don't watch the news. I stay away from people who bring me down. I am fighting to fill my life with more joy and less junk. I'm looking for a sort of bliss that comes after years of being in bed, not being myself, not doing what I wanted to do. My thoughts and actions focus only on that: BLISS.

Monday, October 27, 2014

Advice for Cort-Reduction Surgery

I just made up that name. Cort reduction surgery sounds like the new wave of self help surgeries, doesn't it?

Well, as each day goes by, a new Cushie gets diagnosed and heads to surgery. One friend, Heather, has been worried about decision to undergo pituitary surgery. She mention more anxiety and growing concerns as the surgery day approaches.

I have personally been at the "Well, what's gonna happen to me now?" stage more than once.

I have been diagnosed with Cushing's FOUR times in six years. I endured the insanity of consecutive daily midnight blood draws, midnight saliva tests, and urine collections FOUR time periods in my life. I had to determine the best option to get rid of this tenacious cortisol beast that is Cushing's FOUR times. *It ain't no picnic.*

TESTED MY CORTISOL
12/2007. First diagnosis -- pituitary surgery; delayed while I tried to become pregnant.
09/2008. Darling baby arrives.
06/2009. Pituitary surgery #1.

TESTED MY CORTISOL
04/2009. Pituitary surgery #2.

TESTED MY CORTISOL
07/2012. Started ketoconazole.

TESTED MY CORTISOL
12/2013. Bilateral adrenalectomy.

Each time I tested, I faced questions I already knew would hang over me: What treatment would I face next? Will this finally work? Only each time, a decision had to be made, and I had to follow through with that decision all the way to surgery day.

As the years go on, uncertainty gets worse. Desperation sends your mind racing, while bleakness takes residence in your heart. You know the choices. You know which of your friends it worked for. As you realize you have already tried nearly everything, you also realize there are just not enough appealing choices left.

So I tell my friend to do what she can, but take a break from the worry.

"Your body is trying to trick you. Cortisol ramps up towards a stressful event like surgery, and doubt and anxiety build. Don't let it fool you. The month before surgery is always the worst. Cushing's grabs a hold of us and swings us around like a dog does his chew toy. After surgery, you will realize how clear your mind can be again once the cortisol faucet is shut off and the overflowing tub is drained of unneeded cortisol.

May I suggest doing something for yourself once a week until surgery?
Pick a day and do it.
Movies. Favorite dessert place. Buy a new purse. Go buy a good book for the hospital... Fiction ... No self help books! The days will fly by. You will be better before you know it."

With every Cushie we send to surgery, the community collectively holds its breath until the Cushie is safely through surgery and out of the hospital. We take a deep but quick breath, and we hold it again until we see the signs of excess cortisol reverse in their body over the coming months and years. Will that surgery cure them? We just never know who will make it out of the disease race track on lap 1, 2, 3, 4, or more after these surgery pit stops. "We elders just can't bring ourselves to say, Kid this may be it, or you may be back at the plate for another turn."

Only time will tell.

Saturday, October 18, 2014

Straight Talk Cushing's

It's good to have choices.

Now there are two FDA-approved drugs available for those Cushies who are not a candidate for a/another surgery but still remain uncured -- Corcept's Korlym and Novartis' Signifor. Two years ago, there were none.

The long-term benefits are clear.

The entire Cushing's community benefits from Big Pharma dollars spent to create what we all want -- disease awareness, earlier diagnosis for all patients, and better treatment options.

To this end, I want to share the fist video that I have seen from Novartis to further this shared mission. It is well done and quite informative.

Share the link and save a life.

http://m.youtube.com/watch?v=Z2vS7sVvx0o&feature=youtu.be

(I tried to embed this video but this action is forbidden by the Novartis youtube channel. Click through. It is an informative video.)

Sunday, October 12, 2014

Quick, Easy, Inexpensive Cortisol Testing Should Soon Be Available on All Smartphones

June 2014

Quick, Easy, Inexpensive Cortisol Testing Should Soon Be Available on All Smartphones

Contact: Aaron Lohr
Director, Media Relations
Phone: 202.971.3654
alohr@endocrine.org
Contact: Jenni Glenn Gingery
Manager, Media Relations
Phone: 202.971.3655
jgingery@endocrine.org

CHICAGO, IL—Researchers have developed a device that uses any smartphone to measure the cortisol concentration in saliva. The device was presented Tuesday, June 24, at ICE/ENDO 2014, the joint meeting of the International Society of Endocrinology and the Endocrine Society in Chicago.

"We have developed a method for measuring cortisol in saliva using a smartphone and a disposable test strip. This innovation enables anyone with a smartphone to measure their salivary cortisol level quickly, accurately, and affordably," said lead study author Joel R. L. Ehrenkranz, MD, director of diabetes and endocrinology of the Department of Medicine at Intermountain Healthcare in Murray, Utah.

Cortisol is a hormone made by the adrenal glands that's essential for the body's response to stress, and measuring cortisol can help diagnose adrenal diseases and monitor stress levels. Current testing for salivary cortisol levels involves collecting a saliva sample and sending it to a clinical lab for analysis.

"A lab charges about $25 to $50 for a quantitative salivary cortisol test and has a turnaround time of days to a week. This test, taken in a medical office or at home, will cost less than $5 and take less than 10 minutes," Dr. Ehrenkranz said. "The device is a reader that includes a case, a light pipe, and a lens and costs about a dollar to make. There is no battery power and it's unbreakable, passive and reusable."

Doctors worldwide can use the smartphone test to help them diagnose adrenal insufficiency and hypercortisolism and monitor physiologic variations in cortisol concentration; and individuals can monitor their own cortisol levels whenever they like. 

The software is "operating-system-agnostic," he explained, meaning that the device can be used on all platforms, including iOS, Android, Windows, and BlackBerry, and it has a universal form factor that works with all smartphones.

The person being tested inserts a straw-like saliva collector under the tongue. The collector wicks the saliva by capillary action to an immunoassay strip housed in a cassette and the cassette is inserted into the reader. The smartphone uses its camera and flash to take a picture of the saliva-coated strip and an algorithm converts the image's pixel density to a cortisol value.

Marketing this test as a cortisol assay would make it a class 2 medical device, Dr. Ehrenkranz explained. He and his research team are now collecting clinical data for the FDA submission, and hope to attain approval in 2015.

This study was privately funded.

# # #

Founded in 1916, the Endocrine Society is the world's oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology.  Today, the Endocrine Society's membership consists of over 17,000 scientists, physicians, educators, nurses and students in more than 100 countries. Society members represent all basic, applied and clinical interests in endocrinology. The Endocrine Society is based in Washington, DC. To learn more about the Society and the field of endocrinology, visit our site at www.endocrine.org. Follow us on Twitter at https://twitter.com/#!/EndoMedia.




Handheld Cortisol Sensor for PTSD via iStart.org

Let's reward the businesses out there working to make a cortisol meter!

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Abstract

Our cortisol sensing technology enables monitoring of stress levels non-invasively using a nanoengineered biochip and a handheld measurement device. The nanoengineered biochip is both low cost and disposable. We are working with Florida International University and the National Science Foundation's I-Corps program to assess both the market needs and market constraints of the technology from an economic perspective while finalizing the development of the initial market prototype.

- See more at: http://istart.org/startup-idea/consumer-goods-life-sciences/handheld-cortisol-sensor-for-ptsd/24000#sthash.tIzmUwin.dpuf