Sunday, September 14, 2014

Lessons of Alexis Shapiro: Texas Girl's Ordeal Spotlights Silent Crisis

Image: Alexis Shapiro 

Lessons of Alexis Shapiro: Texas Girl's Ordeal Spotlights Silent Crisis


A Texas pre-teen's medically induced obesity and subsequent slim-down has led her parents to a broader mission: Ensure that people with dangerous adrenal insufficiency get the right treatment in emergencies.

Alexis Shapiro's condition, caused by removal of a benign brain tumor three years ago, prompted nonstop hunger that pushed her weight above 200 pounds. Life-saving surgery in March has left her 50-plus pounds trimmer.

But her mother, Jenny Shapiro, said Alexis remains vulnerable to potentially lethal blackouts linked to adrenal insufficiency or AI — a little-known condition that a leading specialist says might be vastly underdiagnosed and could affect several million people in the U.S.

Alexis' condition must be painstakingly managed via oral steroids and 24/7 access to a needle and the drug Solu Cortef, which must be injected within 30 minutes after serious symptoms arise. Yet the vast majority of ambulances don't carry the drug.

Shapiro is banding with a network of"friends and family" impacted by AI to lobby for all EMS units to carry Solu Cortef — and to urge that all first responders learn more about the illness.

People with AI lack vital hormones produced by the adrenal glands. The paired organs sit atop the kidneys, flooding the body with chemicals that, among other things, maintain blood sugar, blood pressure and cardiac output during stress, said Dr. Michael Freemark, chief of pediatric endocrinology and diabetes at Duke University Medical Center.

Some people are born with AI. But far more — possibly "several million," said Freemark, who supports the push for EMS units to carry Solu Cortef — have secondary adrenal insufficiency caused by brain tumors (and their removals), strokes or long-term use of administered drugs like prednisone and hydrocortisone.

The worst symptoms of AI can include disorientation, shock, organ failure and death, unleashed by stress, sudden injury or illness.

"I told them she has adrenal insufficiency and was going to need her shot at the hospital. She was white as a sheet, shaking, going into crisis."

Two close calls with AI have stricken Alexis — the second aboard a jet as sheflew to Cincinnati last spring for the gastric-sleeve operation that curbed her ravenous appetite. (NBC News has followed Alexis' journey since December.)

But it was the first terrifying episode at her kitchen table about a year ago that launched Jenny Shapiro's latest fight for her daughter, who wears a medic-alert bracelet revealing she has AI. A chair accidentally landed on and fractured Alexis' pinky toe — and the injury triggered an adrenal crisis.

"Before the ambulance got there, she said everything was going dark," Sharpiro said.

The mother gave Alexis five steroid pills to swallow — what's known as a "stress dose." (She normally takes one pill in the morning, one at night.) She hoped her daughter would keep the meds down. Vomiting is a common symptom of adrenal crisis. Sharpiro also agonized about giving Alexis an emergency Solu Cortef shot in case her stomach heaved up the tablets. As the EMS team arrived, Shapiro urged them to rush Alexis to the hospital. They urged her to "calm down."

"A lot of paramedics don't know what it is. When they came to my house when Alexis was in crisis, they kind of blew me off when I kept asking if I should inject her. They didn't know what I was talking about," Shapiro said. "That, plus not having the medication on ambulances, creates a dangerous situation."

Image: Philip Hart, who died in 2009 at age 22 of an adrenal insufficiency crisis.

Philip Hart, who died in 2009 at age 22 of an adrenal insufficiency crisis.

Many people likely wouldn't learn they have AI until they lapse into a disorienting adrenal crisis, said Eric Hart. He lost his 22-year-old son, Philip, to an adrenal crisis caused by undiagnosed Addison's disease. Philip's adrenal crisis was triggered by a bout of flu.

His death spurred Hart to start, a nonprofit in the Raleigh, North Carolina, area that has persuaded a local EMS training school to list adrenal shock as an illness paramedics must consider when assessing patients.

"Like Alexis' parents discovered, Solu Cortef is not carried on ambulances — something we seek to change," Hart said. "This needs to go nationwide."

Adrenal Insufficiency United is spearheading the drive to raise awareness among medics and, perhaps eventually, equip every ambulance with a $7 vial of Solu Cortef, a corticosteroid that restores the body's crashing hormonal chemistry and helps people in adrenal crisis to start recovering.

The nonprofit, based in Eugene, Oregon, was formed by Jenny Knapp, whose 18-year-old daughter was born with AI (Knapp's daughter, who wears a medic-alert necklace, prefers not to be named).

Knapp's daughter has a horror story similar to Shapiro's. The triggering incident was a car accident.

"I did not have the Solu Cortef injection with me because my (daughter's doctor) told me EMS squads carry it and would give it to her," Knapp recalls. "The ambulance got there. They didn't have it. I told them she has adrenal insufficiency and was going to need her shot at the hospital. She was white as a sheet, shaking, going into crisis. They barely looked at her."

On Tuesday, Knapp's group launched anonline petition to establish new emergency policies to treat adrenal crises, emphasizing "timely treatment prevents needless disability and death." By Friday, more than 3,000 people had signed the petition.

"You have a $7 injection versus someone becoming permanently disabled or dying from this," Knapp said. "Is this a third-world country where people are dying because of (the lack of) a $7 injection on ambulances?

"I don't blame EMS (emergency medical services) for this," Knapp said. "What they hear in training about adrenal insufficiency is maybe a couple sentences. They want to help. I'd love all EMS to carry Solu Cortef. However, that's not going to work for (all EMS units). Our solution is: 'Why don't you (paramedics and EMTs) just inject the patient-carried meds?'"

But that option is unsafe, contends Dr. Alfred Sacchetti, an emergency-room physician in Camden, New Jersey. He also speaks for the American College of Emergency Physicians (ACEP), an organization that includes EMS directors.

"If they want the ambulance squads to give their kids Solu Cortef that someone pulls out of the refrigerator, that's not fair to an EMS squad," Sacchetti said. "The paramedics would think: 'What's really in this vial? How much do they get?' The whole thing is very suspect."

The better choice, Sacchetti asserts, is to treat people in adrenal crisis with Solu Medrol, a glucocorticoid carried by every EMS responder. That drug will "buy you time," stabilizing the patient until they reach a hospital, he added.

"I've talked to some of these parents at length: 'I understand, you've got a child with a special problem and I sympathize.' But I can't say to every EMS squad: 'You must carry all of these very unusual drugs for the three people in the state who have this disease.' You couldn't justify the cost," Sacchetti said.

Freemark, the AI specialist from Duke University Medical Center, disagrees with that stance — and with the number of people perhaps afflicted. He believes all EMS units should carry Solu Cortef — and should include AI among the assessment protocols used to evaluate patients in distress.

"It is a potentially life-threatening condition," Freemark said.

    Friday, July 4, 2014

    Hug your Cushie: What is getting an MRI like?

    I am happy to introduce my new series, Hug your Cushie. Life as a Cushie is rough. You see it happen to your loved one or friend. You drive them there. You are there for the lab results and surgeries. Yet, you don't really experience the difficulties first hand. I want a way to show caregivers just some of what we experience. What if this were you?

    This is not a "woe is us" series. This is a "warriors keep going no matter what series." It is important that caregivers and friends understand this, I mean, really understand the toll this takes on a patient.  I hope that after being a Cushie for a few moments that you understand the physical and emotional challenges we face. Be sure to Hug your Cushie today.

    Hug your Cushie: What is getting an MRI like?

    I found this informational video intended for patients who need to undergo an MRI.


    I patiently watched that video. It all sounds pretty doable. Pleasant even! Well, why do I associate this machine with a torture chamber?

    I have been getting MRIs every six months for seven years now. I used to convince myself that it was no big deal. It was, after all, just what had to happen as a patient with pituitary tumors.

    Stoic. I'm always trying to be stoic.

    The last time I went for my pituitary MRI with dynamic protocol, I asked my dear friend Melony to tag along as "moms play date." I promised her dinner afterwards, but one condition:  she could not make me laugh in there. Melony held on to my leg the whole time. At the end, she asked, in tears, how I can stay so strong every time?  I told her that I really am not! I hate that machine! I hate the noises! I hate the head contraption that keeps my neck from moving. I hate lying in a tube where my whole body is touching the bottom and sides of the tube, with only four inches of space between my chest and the top of the MRI tube. I hate MRIs. There. I said it. 

    I don't have to be brave and mask all the challenges of being a patient. However, I will continue to get MRIs, as my treatment plan requires me to do, for the rest of my life.  I will always look forward to getting out of those tubes and on to more magical sounds.

    Some awesome person recorded the sounds of an MRI for 35 minutes. Click below, lean way into your speakers, even put your ear right on the speaker. Then stay put. See how long you can stay there before you pull away from the clicking and hammering sounds. Then remember, we Cushing's patients can not stop and move the noise. We have to float our minds off to a special place where we joyfully pass each minute in peace and quiet.


    If you like what you see here, share the blog. Please do not lift links or images then share them. Blog authors spend time away from family, time when they are sick, to make these posts. Hug a Blogger. ��

    Thursday, July 3, 2014

    My Quest by Care360

    Back in 2011, I bragged about how Quest Diagnostics gives patients their test results through their app. I happily study each report to understand my disease and hormonal levels.

    I have been disappointed, however, that when I arrived in California in late 2011, I was unable to access my results in a timely manner or in an app!  California law prohibited Quest from releasing these results to me. Since then, I have struggled waiting for my doctor to release results to me.  Why should I need to wait? I need these numbers to adjust medications quicker than a doc can return the phone call.

    Well, I paid a bill online with Quest Diagnostics, and I see a new message. They have a new app as their patient portal.  Instead of Gazelle, we have MyQuest by Care 360.  The system recognized my old user name and password. I saw this message when trying to request lab results:

    Based on California law, Quest Diagnostics is delaying release of test results for 14 days to allow your physician time
    to review your test results.

    Hot diggity!  This is something new!  Oh, I have so much relief now knowing that the minimum I will wait is 14 days after the date of labs.

    Well, this day just got a little sweeter.


    Why is this a big deal?  Patients are becoming more confident and informed consumers in the medical marketplace. In addition, those of us plagued by chronic illness need every bit of information about our case at our disposal, to pass along to other medical providers as needed. In addition, patients will research ever line item on the lab report to ensure they understand the result from each test. Doctors are notoriously for telling a patient the results are normal.  Many times, even when cortisol levels are tested and abnormally high, doctors dismiss them as normal.  No Cushie should have their life and diagnosis delayed because the doctor misread or didn't value that abnormal results, or even still, *know what to do with this abnormal test*!  Patients must keep a file and stay informed.  Know one will care more for your health than you.


    Monday, June 30, 2014

    ** Measure cortisol on a smartphone **

    The Cushing's community has bemoaned the absence of any cortisol-measuring device for the patient's use. Now after my bilateral adrenalectomy, it is critical that I know what my cortisol levels. I must adjust my hormone replacement, avoid taking too much and giving myself Cushing's, and worse, taking too little and suffering adrenal crisis. We are desperate for a way to measure cortisol levels outside a lab setting. We need tests results quickly.

    Here is the recent announcement for a cortisol-measuring device.  After this gets FDA-approval, it will save lives. Such a burden will be lifted for me, my family, and the entire Cushing's community.

    ""When cortisol levels are overlooked too many people suffer and die because of excess or insufficient cortisol," said Joel Ehrenkranz, MD, director of diabetes and endocrinology at Intermountain Medical Center, and lead researcher of the project.

    To help solve this problem, researchers developed a simple saliva test that uses a smartphone and an attached device that inexpensively feeds the results of a saliva test into the smart phone. An app then quantifies and interprets the results of a salivary cortisol assay and gives results in five minutes at the point of care."

    Sunday, June 29, 2014

    Facial Recognition: Hope for Cushies?

    Because Cushies can have very specific body changes, such as moon facies, red cheeks, supraclavicular pads, this type of disease database can help an ailing yet undiagnosed Cushie. Also, the technology could easily be expanded to help adults as well as children.

    *~* Your Family Photo Facebook Album Could Help Doctors Diagnose if Your Child Has a Rare Genetic Disease *~*

    Digital photos are proving to be important medical tools to help doctors diagnose rare genetic disorders in children. "The future of medicine can live in a selfie."

    Saturday, May 17, 2014

    Do you have an emergency shot?

    It is of the utmost importance that people with bilateral adrenalectomies are prescribed and carry Solu cortef injections with them at all time.

    I recently took a pill among BLAers, and 10 of 60 patients were not given prescriptions for the emergency injections. Many endocrinologists refused to prescribe them and some even were chastised for their silliness in asking.

    I was furious. 

    This was my reply:

    "Very simply stated in words an endocrinogist should understand:

    **A person with no adrenal glands need a Solu Cortef emergency injection like a type one diabetic needs an glucagon emergency shot. No excuses. No leeway. **

    For those without the emergency injection, I want you to know that those with it always have it available in the house AND take it with us wherever we go. We carry two needles, Solu cortef actovial medication, crisis letter from our doctor about treatment in the hospital, plus additional info to advise ambulance personnel or even the emergency room staff how to treat adrenal insufficiency. 

    Ask your nurse and doctor friends if they know where the adrenals are. Then ask them what they do. People don't know. It's sad and shocking but true. Not even the nurses and doctors in the emergency room know what to do in the event of your adrenal insufficiency or crisis. Many in this group of 95 have horror stories about ER hospital staff refusing to give Solu cortef, refusing to read/ disregarding the crisis letters from my doctors. Some refuse to take patients back quickly to check blood pressure, and instead leave them in the waiting room for hours. ER staff thinks you have the flu or a bad stomach but when you vomit uncontrollably, or they label you a drug seeker. 


    There is no reason besides ignorance and stubbornness for them to treat us like that.

    The *one* safeguard we have is to save ourselves by keeping the shot with us at all times and ensuring those closest to us can administer that shot to us. Some lose consciousness with adrenal insufficiency, while many get very confused and can't manage to do the shot themselves.

    I have not met 85% of you, I know. However, I would be devastated if we lost any of you.  I will tell your family to sue the doctor if you die. Not giving a BLAer an emergency shot is a malpractice suit waiting to happen. Try telling the doctors that. 

    While I will tell your family, that's just a lot of tears and worry for me and your family!  Please I ask you to insist on getting an injection with refills and stay alive. 

    Don't make me stress dose with my Solu cortef actovial 100 mg injection."

    Friends posted this letter from the National Association for Rare Diseases for care in emergency rooms (link) as well as a letter to doctors who refuse to prescribe the Solucortef medication. This can save a person's life.

    Thursday, April 24, 2014

    Cushing's Awareness Month: A Pain to Treat

    ASSIGNMENT 13: The 'pain' of feeling caught in the middle

    Fellow Cushie Vanessa is featured in the article below about patients with chronic pain issues being frustrated with being questioned about using their pain killers for other purposes!!

    Monday, April 21, 2014

    Cushing's Awareness Month: It's Not our Fault

    Our planet Earth is comprised of billions of people of different faiths, cultures, and customs. Some are so different that people go to war. With all the things about us that make us different, there seems to be one world view that we share: 

    Fat is bad.

    I don't feel well enough to do the google search, but I'm sure there are studies that show women would rather be dead than fat. Our society is just that shallow.

    How do you dismantle the American and whole world's belief that:

    1) fat is bad;

    2) if you are fat, you did this to yourself;

    3) I may be fat but I'm not as bad as you, and until I am, then I can make fun of you.

    It's all ridiculous, now, isn't?

    Fat or not, medical or not, when will we just let people be, without commentary? Why does it inflate or deflate a person's self-worth to be thin or fat?

    In my case and in the case of Cushies, we are fat for a reason.

    For whatever reason a person is fat or overweight, just stay out of it. Why do you care? Don't you have anything better to do?  We are out doing something better -- we are telling all these fatties that it just maybe ALL IN THEIR HEADS.


    Cushing's Awareness Month: Why Doctors Don't Know

    Many patients spend hours in bed struggling with life and wondering why doctors don't do more to help us. Why would he think I'm lying? Why won't she believe me? How can they get away with treating me that way? Why do I pay them when I get no help or answers? No interest? Furthermore, we wonder why doctors don't know about Cushing's.

    Endocrinologists treat diabetes and thyroid patients. That's probably 85% of their case load. So in walks a pituitary or adrenal patient, and a doc may not be ready to dust off the information in their minds where such treatment notes lay dusty. Instead of telling the patient they are a little rusty or they will get back to us after some research, the doctor blames us. It's our fault. We are doing something wrong or not doing enough of what we are doing right. It's always the patient who is wrong, not them. 

    The National Academy of Hypothyroidism has provided an evaluation of the problem that is so spot on, I can't actually believe I am seeing it in print.  It is a honest yet searing look at doctors as business owners and less like medical minds who took an oath to "do no harm."

    Give this a read, and you will quickly see that patients aren't benefitting from this method of medicine or from the continuing education credits doctors register with their professional societies. 

    Why Doesn't My Endocrinologist 

    Know All of This?

    "Similarly, the Endocrine Society, the American Association of Clinical Endocrinologists and the American Thyroid Association also have a long history of guidelines and recommendations that are not supported by the medical literature and fail to adjust or abandon recommendations when new understanding and knowledge contradicts their recommendations. A case in point is the recommendation by these societies that a normal TSH adequately rules out thyroid dysfunction, despite massive amounts of literature that demonstrate this not to be the case (see Diagnosis of Hypothyroidism) or that T4 only replacement is adequate for most patients. A doctor who simply follows outdated society treatment guidelines that relies on a simple laboratory test and ignores the clinical aspects of a patient is not practicing evidence-based medicine. (1-7). Such doctors may be adequate as lab technicians, but as doctors and clinicians they fall short (1-7). This method of practice is consistently rebuked as improper and poor medicine, but has become the standard used by a large percentage of endocrinologists and physicians who feel medicine can be related to simply reading "normal" or "abnormal" in a laboratory column."

    Sunday, April 20, 2014

    Cushing's Awareness Month: How do I partner with my doctor

    How do you ensure that you are telling your doc everything you can, all information is accounted before the appointment arrives?

    5 Things to Do When Symptoms Are Not 'All in Your Head'

    "Half the battle is putting a name to your condition and understanding whether it's treatable and/or curable. The other half is trusting yourself as an accelerator and facilitator of the diagnostic process. By learning from Val's experience, you may be able to take charge and save yourself years of frustration and anguish."

    Saturday, April 19, 2014

    Cushing's Awareness Month: Notes from a Neurosurgeon

    Dr. McCutcheon is a wonderful neurosurgeon. He performed my second pituitary surgery. 

    Dr. McCutcheon has helped many Cushing's patients by understanding the disease and listening to his patients.

    Dr. McCutcheon is a professor at world-renowned MD Anderson Cancer Center located in Houston, TX.

    Friday, April 18, 2014

    Cushing's Awareness Month: When the "gold standard" becomes tarnished

    Board-certified endocrinologists do not know how to diagnose Cushing's.

    Robin, blogger at, wrote the post that is true today as it was all those years ago (sadly.)

    Cushing's Awareness Month: Diagnosis is not as easy as it seems

    My Cushing's specialist, Dr. Friedman presented this slide show five years ago. 

    Diagnosing Cushing's Syndrome: 
    Not as Easy as it Seems

    Cushing's Awareness Month: Pituitary & Adrenal Glands

    I found these very realistic images of the pituitary and adrenal glands from from, and I just had to share.

    Images 1-4 show the pituitary gland.
    Images 5-7 show the adrenal gland.

    Pituitary disorders IMAGE LIBRARY

    The world's largest online library of high-resolution 3D scans using real human data—at your fingertips! TheVisualMD uses the most advanced 3D medical technologies to create its one-of-a-kind visualizations. You'll find accurate, detailed images of subjects ranging from angioplasty procedures to brain synapses to yoga positions.

    Thursday, April 17, 2014

    Cushing's Awareness Month: Cushies Care

    When Cushies don't know where to run, we run to each other.

    Wednesday, April 16, 2014

    Cushing's Awareness Month: My Life is a Delicate Balance

    I'm confounded as to why family and friends around me aren't too startled or concerned when I say I could die if I forget a dose of medication or if a physical or emotional stressor is more than the medication I took for the day. 

    Do they think I'm kidding?
    Do they think I'm exaggerating?

    I would neither kid or exaggerate about my daily situation.

    I have been told to "Stop thinking like that" or "That's not ever gonna happen to you."  When I try to explain that I have many friends that have faced adrenal insufficiency and adrenal crisis -- 20 or more a year I'd guess -- they just brush me off. They aren't hearing what I am saying. My feelings aren't just hurt; inside, I am panicking. 

    This isn't a punchline or a Debbie Downer moment when I tried to show my life is more delicate that yours.


    I tell you this because I am scared.

    I tell you this so that if something happens and I fall unconscious in your presence, I can find comfort in the fact that you will help me.

    I tell you so that I will feel safe going somewhere without my husband or "out on my own" with someone who doesn't acknowledge or understands my new condition. 

    I tell you this because I have a great desire to leave this house occasionally and dip my feet into life and try to live again in the world.

    Your response doesn't sit well with me!  Are you in denial? I can't live like that! I can't pretend this doesn't exist. I can't ignore my illness, and frankly, I just can not have you do that either. 

    I'm scared shitless that because no one listens to me, no one will help me and I will die accidentally.

    People do, you know. Die from this.

    Cushies with no adrenals like me or others after pituitary surgery die because people around them didn't know the situation was serious. 

    I do not want to die that way.

    Can I count on you to listen to me? To let me tell you know what to do for me? 

    Can I count on you to say: 

    *  Don't worry. I got this.

    *  I won't let anything happen to you.

    *  Show me how to give you the emergency shot.

    *  I will make sure the EMS and ER folks understand the severity of your case.

    *  I will show them your medical bracelet.

    *  You aren't gonna die on my watch.

    Seriously. That's all we want to hear.

    We want to hear that you love us enough to learn to keep us safe.  We love you, and we want you to love us enough to save us. Will you do that?


    Here's a story about a lady. Things lined up pretty well for her. Someone paid attention. This doesn't happen every time, so don't fooled by the ending. -mm

    Female Patient found Unconscious with Syringe Nearby - Case of the Month

    Cushing's Awareness Month: Thanks but No Thanks

    Cushies find that everyone offers unhelpful advice instead of learning about our disease. Frankly, we don't need that kind of help! We would rather you listen to us and give us the opportunity to tell you how Cushing's has changed us. That's what we want the most: for those who love us to understand the devastation and to know that we didn't do this to ourselves.

    Robin, the Cushie survivor who blogs at, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!

    Cushing's Awareness Month: Endos in Short Supply

    Friday, April 11, 2014

    Cushing's Awareness Month: Degree of Difficulty

    I enjoy a good obstacle course game show. As a child, I fell in love watching Battle of the Network Stars. I DVRed Wipeout and giggle throughout. I am such a Ninja Warrior fan, I can't even tell you. 

    I didn't make the connection to that interest until I saw the cartoon below posted by my friend, the incomparable MaryO, founder of

    I see this cartoon, and it is clear to me very quickly. That reality looks easy. That reality is doable. That is stuff people can get through. We all expect that. Life has ups and downs. We made it through childhood, we get that.

    The reality looks like a cake walk compared to Cushing's diagnosis and treatment. That, I was never prepared for. 

    After fighting for seven years from first seeing the word CUSHING'S in March 2007, I have been on the long and circuitous path to diagnosis, pituitary surgery, rediagnosis, pituitary surgery 2, rediagnosis, medical therapy with ketoconazole, rediagnosis, bilateral adrenalectomy, and now bimonthly lab work.


    I must determine the optimal balance of 20 to 25 hormones despite a damaged pituitary gland and zero adrenal glands. I have no functioning master gland, no hormone control center. I take pills, use patches, and slather gels multiple times a day. Lather. Rinse. Repeat. 

    So if I were handy or artsy in more than one cell, I would draw up a new cartoon to resemble my reality -- and many Cushies' shared reality -- to win good hormone health. 

    - Drops would fall back down to or below starting point

    - Fewer ladders

    - Ferocious beasts chasing us back to start or keeping us in the same spot for weeks and months, some hidden so we never see what we are fighting

    More creeks without paddles

    - Hidden quick sand and tar pits

    After every obstacle imaginable, take that course and duplicate five times. No. TEN TIMES. That is the life of a Cushie. 

    In my cartoon, the finish line flag has hearts in each square and a line of friends pinning blue/yellow medals of honor and bravery upon each other. I'd give each one the red badge of Moxie. 

    Wednesday, April 2, 2014

    Cushing's Awareness Day 2: Depression Cloud Follows Cushies

    Cushing's patients face mental as well as physical changes from excess cortisol and pituitary/ adrenal tumors, making it excruciatingly more difficult to cope.

    I logged onto my online Cushing's group tonight. 
    Within minutes, I see this poem from Theresa in California.  

    Without hesitation, I wrote to her:

    This saddens me so much, Theresa. Yet, I related to all the words.  I even felt the same way you expressed in the last line.  I ask you, Please hang on.  It is a dark road, but you can make it. You can survive. Hang on to us here. Together, we will stand strong.
    I then asked Theresa if I could share this here.  She was thankful for the support and granted my request.

    For Theresa, myself, and all the other Cushies out there who struggle to understand this new world into which we have been completed submerged, I share this poem with you.

    Once again I've opened my eyes
    to another day of sickening thoughts and silent criesMy mind awakes once more to realizeI must face yet another day of struggling to surviveThe pain sets in and the unrealistic, realistic thoughts pour inI cannot concentrate, focus, just sit and wonder how to beginTo get back the life I once had, so normal and trueLoving family surrounding, yet none with a clueFilled with disease my body began to failTo disintegrate, fall apart and become frailAway from reality, family and friendsIts taken me to hell without any endI've lost my life, my friends are fewFamily doesn't understand, as white trash I am viewedI don't want to go on, each night I lay my headI pray I'll just sink into the ground because I feel I am already dead.

    Tuesday, April 1, 2014

    Post #1: Chronic Pain and Incertainty

    Cushies are tormented as we struggle with the medical community and face our own bodies and changing identities every day.  It just shouldn't be this way. 

    I can not think of a more perfect way to kick off Cushing's Awareness Month than with this entry by author Toni Bernard.

    Really. There is just nothing left to say on this issue. Toni has said it all.

    How Chronic Pain and Illness Fan the Flames of Uncertainty

    Cushing's Awareness Month

    Here we are again! April is here.
    One of my favorite times of the year.

    Although many celebrate one day of Cushing's awareness centered upon Harvey Cushing's birthday on April 8th, it is my goal to see April celebrated as Cushing's Awareness Month.

    We need the chance to educate and advocate.

    We need the support of those who surround us every day.

    We need to reach all of the undiagnosed souls seeking answers in uncertain times.

    We need the chance to stand up as survivors, hold hands, and say, Yes! We made it through another year.

    April has become a very important time of the year for me, as a Cushing's survivor, and I hope you enjoy what's pops up this month. It will be a surprise to all of us, since even I don't know what I will say in 30 posts in April. ;)

    Stick around. It will be fun for all of us.

    - Melissa

    PS Special thanks to Robin for designing the Cushing's Awareness logo. She blogs at

    PS2 Look how honest I am. I'm
    Not even gonna count this as my first real post. I'll do 31 posts in April, and I will like it! So will you. :)

    Monday, March 31, 2014

    Actors faking ailments to help doctors improve

    Can we get some Cushing's patients in the mix? These doctors need practice listening to our stories.

    How ca I get a job doing this full time? No need to write up a script. I'll just use my real-life experiences. Easy peasy.

    Thursday, March 27, 2014

    Cortisol Clock?

    If my adrenal glands really looked like clock parts, I know why they had to come out!

    Monday, March 24, 2014


    This is the hardest thing to deal with, isn't it? Not just with chronic illness or Cushing's, with every day life, right?

    People have no patients. We must find it. It's essential to reducing stress.

    Not a Weight Loss Story

    I pulled my neck on Saturday. I was very sore. My muscles were so tight couldn't turn my neck from side to side. I was so happy when I called my chiropractor and massage therapist for an appointment this am. They could see me at 10 am!

    After a wonderful massage, my chiropractor told me that she didn't even recognize me sitting in the waiting room. I was truly surprised. I told her that I don't see much of a physical difference. She said it was there, and we often don't see it in ourselves because we see it every day. She said I look totally different. She could see it in my face and body shape.

    I haven't seen her since my BLA surgery on 12/31/13 and showed her my six little scars on my back. I will continue with massage therapy once a month and restart acupuncture therapy every other week to help balance hormones and for overall well-being.

    This isn't just a weight loss story, because I haven't lost any weight since BLA. My body shape has changed and my face is much slimmer. I still don't understand where everything has moved or shifted since my weight is the same. My stomach isn't distended anymore. Was that just filled with air? Really. Where did it go? Should I even bother to figure it out? Naaaaah.

    For me, this story means cortisol no longer has me in a vice grip. That means I am getting better. That means I feel like this:

    Wednesday, March 19, 2014

    Adrenal Crisis Pathway

    I printed very detailed flow chart of the adrenal crisis pathway and and placed it in my crisis kit.

    Friday, March 14, 2014

    Thursday, March 13, 2014

    Cushing's overview

    This article from the Pituitary Society is a very informative review of symptoms, diagnosis, surgery and other treatment, and reoccurrence. One point of clarification is that that the reoccurrence rate seems much higher than 15%, even in the hands of the best neurosurgeons.

    Monday, March 10, 2014

    Cushing Syndrome: Maybe Not So Uncommon of an Endocrine Disease

    I heard Dr Salvatori at the Johns Hopkins School of Medicine at the Magic conference in July 2012.

    Saturday, March 8, 2014

    Friday, March 7, 2014

    Tuesday, February 25, 2014

    Must Watch Song!

    Turn up the speakers and enjoy my friend Stephanie tell off Cushing's... in tune!

    Forget You!