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.

http://m.youtube.com/watch?v=DZTXa4qerI4

------------------------------

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.

http://m.youtube.com/watch?v=6Aj2QspPf7s

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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. 😊

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.

Melissa

** 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."

http://www.redorbit.com/news/health/1113177152/researchers-at-intermountain-medical-center-develop-new-smartphone-technology-and-app-to-diagnose-and-monitor-adrenal-gland-diseases/

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."

http://time.com/2921053/your-family-photo-facebook-album-could-help-doctors-diagnose-if-your-child-has-a-rare-genetic-disease/

Do you have an emergency shot?

It is of the utmost importance that people with primary adrenal insufficiency [bilateral adrenalectomy(BLAers) and secondary adrenal insufficiency (Cushies after pituitary or adrenal surgery) are prescribed and allowed to carry Solu-Cortef Act-o-vial injections with them at all times.

I recently took a poll among BLAers, and 15 of 80 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.

Be sure your doctor writes the RX for Solu-Cortef ACT-O-VIAL.

I was furious. 

This is what you tell your endocrinologist in words an endocrinogist should understand:

**A person with adrenal insufficiency (no adrenal glands, post op Cushies) need a Solu-Cortef emergency injection like a type 1 diabetic needs an glucagon shot. Period. **

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. 

SOLU CORTEF 100 MG IS NOT A CONTROLLED SUBSTANCE!! 

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 (synscope) with adrenal insufficiency, while many get very confused, can't communicate, and can't manage to do the shot themselves.

I have not met 95% 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 pre-op Cushie and especially a BLAer an emergency shot is a malpractice suit waiting to happen. Remind the doctors of that. 

*******

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 Solu-cortef medication. This can save a person's life.

http://www.nadf.us/downloads/emergency_treatment_english.pdf

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!!

http://www.weau.com/home/headlines/ASSIGNMENT-13-The-pain-of-feeling-caught-in-the-middle-256576311.html?device=phone

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?

http://nahypothyroidism.org/why-doesnt-my-doctor-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."

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."

http://m.huffpost.com/us/entry/4804631

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.

http://faculty.mdanderson.org/Ian_McCutcheon/

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

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

Robin, blogger at http://survivethejourney.blogspot.com, wrote the post that is true today as it was all those years ago (sadly.)

http://survivethejourney.blogspot.com/2012/04/day-24-of-cushings-challenge-when-gold.html?m=1

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

http://www.goodhormonehealth.com/forpatients/CUSHINGS-dx-magic09cjan11%5B1%5D-1.ppt

Cushing's Awareness Month: Pituitary & Adrenal Glands

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

Images 1-4 show the pituitary gland.

Images 5-7 show the adrenal gland.

The Pituitary Gland
http://www.thevisualmd.com/searchimg/?idu=11447&q=%20gland&p=1

The Adrenal Gland

http://www.thevisualmd.com/searchimg/?idu=10984 

Pituitary disorders

http://www.thevisualmd.com/external_images/pituitary_adenoma

TheVisualMD.com 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.

Cushing's Awareness Month: Cushies Care

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

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

Female Patient found Unconscious with Syringe Nearby

Paramedic's misdiagnosis of drug overdose could have cost patient her life, Journal of Emergency Medical Services, Jul 20, 2012

"A call comes in to 9-1-1 dispatch. “Help” is all that’s spoken before the operator hears the phone hit the floor. The 9-1-1 dispatcher calls back only to get a busy signal. Police and EMS are dispatched for a well-being call. On arrival, the front door is found to be slightly ajar. The crew knocks, but there’s no reply. They find a young woman  lying on the floor... in a pool of vomit."

Sound familiar? This lady is having an adrenal crisis, and the article below from the Journal of Emergency Medical Services explains what happened when the paramedic treated her for a drug overdose instead of recognizing the symptoms of adrenal insufficiency.

Before we get the article, let's be clear. This article is just another example of what we Cushies already know. Medical expertise about our conditions, Cushing's and adrenal insufficiency, is limited, even in the emergency rooms meant to save everyone. We know that doesn't apply to us. We are bombarded with weekly stories detailing horrible treatment at the hands of ER doctors and nurses. Even with an unhelpful doctor, a family member or friend can be the difference, the force that demands attention to our plight.

This is why I am so passionate about advocating for Cushing's Awareness and educating Cushies and their families about the dangers of adrenal crises. I do this as I struggle and because I struggle to deal with the complacency of my own.

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 consumed 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.

MY LIFE IS A DELICATE BALANCE.

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?

Can we count on you to do that?

-------------

Here's a story about a lady. Things lined up pretty well for her. Someone paid attention. One doctor out of thousands practicing out there in ERs across the world, on the medical front line, recognized the medications. This doesn't happen every time. Don't fooled by the ending. 

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

Fri, Jul 20, 2012 Paramedic's misdiagnosis of drug overdose could have cost patient her life, Journal of Emergency Medical Services, Jul 20, 2012

A call comes in to 9-1-1 dispatch. “Help” is all that’s spoken before the operator hears the phone hit the floor. The 9-1-1 dispatcher calls back only to get a busy signal. Police and EMS are dispatched for a well-being call.

On arrival, the front door is found to be slightly ajar. The crew knocks, but there’s no reply. They find a young woman  lying on the floor, naked, and in a pool of vomit. A syringe with an unknown substance is on the ground nearby. Suspecting a drug overdose, the EMS crew begins treating the patient for this condition. The patient is unconscious with emesis around her head and face. Her vital signs are blood pressure 60/45, heart rate of 130 bpm and respiratory rate of 10.

The patient shows no signs of waking. The crew clears the airway and administers oxygen. An IV is established, and the patient is readied for transport. As the crew leaves the scene, one of the medics turns to shut the door and sees a vial under a chair. He retrieves it and notes that the label says Solu-Cortef (a glucocorticoid). He bags it for the emergency department (ED). Following his instinct, he looks around the area for medications and finds two bottles. One is labeled dexamethosone and the other is labeled fludrocortisone. He takes his findings and rushes out the door into the awaiting ambulance. During transport, the patient continues to deteriorate.

The medic administers 0.5 mg of narcan and a 500mL bolus of normal saline with no response. He radios ahead to let the hospital know that they’re en route. Now questioning the original diagnosis of drug overdose, he reports the medications he found on the scene in hopes it will help the receiving physician determine the cause of the patient’s condition.

Arrival at the ED
On arrival to the ED, the medic hands over the loaded syringe containing 2mL of unidentified solution, as well as the empty vial of Solu-Cortef and the bottles of dexamethosone and fludrocortisone.

Read more here.

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 http://survivethejourney.blogspot.com, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!

Cushing's Awareness Month: Endos in Short Supply

http://www.healio.com/endocrinology/diabetes/news/print/endocrine-today/%7B511d7427-678b-42e0-9b7b-4e374fabc62a%7D/us-endocrinologist-shortage-affects-access-to-care-physician-satisfaction

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 www.cushings-help.com. 

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.

Why?

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. 

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.

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

http://m.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-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 http://survivethejourney.blogspot.com/

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. :)

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.


http://m.bbc.com/news/magazine-26723617

Cortisol Clock?

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

http://www.thevisualmd.com/panel/?c=07.3

Patience

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:

Adrenal Crisis Pathway

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

http://www.cahisus.co.uk/pdf/Adrenal%20Crisis%20Pathway%20Professor%20Peter%20Hindmarsh.pdf

Elusive, Sweet Sleep

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.

http://www.pituitarysociety.org/public/specific/cushing/cushings.pdf

Cushing Syndrome: Maybe Not So Uncommon of an Endocrine Disease

http://jabfm.org/content/25/2/199.full

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

A Cushie after BLA

Gave Cushing's the Hand

Must Watch Song!

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

Forget You!

http://www.youtube.com/watch?v=oTmJCzZHD58&sns=em

What is THE WORST DISEASE YOU CAN HAVE?

My blog got Cushing's listed as the 18th site listed, among this terrible list of ailments. At least it's on the radar :)

http://mrwhatis.net/the-worst-disease-you-can-have.html

Radiation vs BLA

Many questions circle around a Cushie's head before undergoing a bilateral adrenalectomy (BLA). Many doctors convince the patient that BLA will kill them or they will die any second (well, unmanaged Addison's can cause death from adrenal crisis but we Cushies can take good care of us), refuse treatment and instead push the patient into radiation therapy or medication that should work but doesn't really cure a patient without causing so many side effects that they new state of health is just as bad.

This is what I have to say about that:

"From what I have seen in others, just limited to those I see online who may still be sick and hunting for answers, there sure are quite a few folks who are never the same after radiation. Five years to wait for a cure is a long time to be sick especially after the many years Cushies wait for diagnosis and between treatments and surgery. For me, I'd rather live for 4.5 years with a BLA-- really LiVe with hope and joy again-- and take my chances on what I will face in five years. I want to live for the now, and with my BLA, I have that chance."

Shop.AIunited.org

Fantastic!  Adrenal Insufficiency United has its new shop up and running.  Get yourself an emergency kit and other goodies.

http://shop.aiunited.org/

Guest Blogger Blogger: Laura C.

My new friend Laura shared her battle with Cushing's. We all applaud her bravery and honesty. #lauraisscool

--im having trouble pasting this here. If it messes up, I'll be back when I have more battery. I'm at 4% and no cord in sight. Well, it is 3:10 am!

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HEALTH & BEAUTY

From Size 8 to 18: The Disease That Stole My Body

P.S. I'm overweight because I have Cushing's Disease, not because I ate doughnuts for eight years

If you had told me when I joined the Peace Corps that, in 18 months, I'd be medically evacuated out of Ethiopia after falling into a suicidal depression, I wouldn't have believed you. If you had said that I'd spend the next 28 days in a mental ward, trying to convince a team of doctors that I was not, in fact, crazy, I'd have thought thatyou were crazy. If you had told me that, three years later, I'd still be battling the disease that prevented me from completing my service, I would have wondered, 'What disease?' I'm a healthy, happy 23-year-old about to embark on a life-changing adventure.' 

Pre-Cushing's

Ironically, the biggest "adventure" in my life wasn't joining the Peace Corps and working in Ethiopia, but it did start there. In January 2011, I stopped getting my period, my hair started falling out, I was gaining weight and I was feeling depressed -- out of character for me, since I usually laugh as much as I breathe.

I went to my Peace Corps doctor, who chalked it up to situational depression (somewhat common for a volunteer in that stage of service) and Polycystic Ovarian Syndrome -- all without any actual testing. By April, I had completely withdrawn from my life. I stopped going to work and corresponding with my friends and family, including the host family I was living with. I was flown to Addis Ababa, Ethiopia's capital city, where doctors diagnosed me as severely depressed and shipped me to Sibley Memorial Hospital in Washington, D.C., for treatment. 

I was in a haze -- totally shell-shocked. I had been immersed in a totally different culture for a year and a half, I hadn't slept in a week and the doctors had given me Valium. When I was told to sign my name on the dotted line for self-admittal, I did as I was told. And I was locked in a psychiatric ward for 28 days. 

Over the course of my stay, I was treated like a lab rat. I had blood work done everyday, a spinal tap, five MRIs, an EKG -- if it's done in a hospital, it was done to me. I was also put on four potent psychotropic drugs -- none of which I responded to. At one point, my psychiatrist suggested I undergo electroconvulsive therapy (ECT). I saw people on my floor after an ECT session and they were zombies for 24 hours. Even though I was in a fog of drugs, I had the wherewithal to say no. 

Because I wasn't talking to anyone and had shut down emotionally, my psychologist and psychiatrist assumed I had been raped in Ethiopia. They kept saying to me, "When you're ready to talk about it, we're ready to listen." But I wasn't raped, and I felt like they resented me for not being an interactive patient. 

Meanwhile, I was packing on weight. In three months, I put on about 30 pounds and my face was completely blown up. A Peace Corps nurse saw my passport picture, noticed the difference in my face size, and said I should be checked for Cushing's Disease, a rare endocrine disorder that makes your body produce crazy amounts of the stress hormone cortisol. 

Finally, a Diagnosis
I kept telling my doctors I wasn't crazy. Severely depressed? Yes. Did I need help? Yes. But not the kind I was getting. Finally, they told me (at 1 a.m., by shining a flashlight in my face) that I had Cushing's Disease -- my cortisol levels were off the charts -- and needed brain surgery. A nurse printed off some information from Wikipedia and said, "Here's a survivor story about someone who had this brain surgery and lived to tell about it." I was thinking, 'Is this really what my life is going to be like?'

The Source of My Sorrow: A Tumor
So that was my re-entry into America -- welcome home, right? My parents took me home, and I checked into Shands at the University of Florida. It took them one MRI (I had three at Sibley) to find a big ol' tumor on my pituitary gland. I had my first brain surgery in August 2011. By then, I had gained 50 pounds, I was covered in heinous purple and pink stretch marks and I had half a head of hair. Uneven weight distribution (skinny appendages with central obesity) is a symptom. My first endocrinologist gleefully remarked that it made me look like a giant lemon with toothpicks stuck in it. (Thanks, Dr. Asshole.) My new physical features didn't exactly help my depression (another side effect of Cushing's). 

How many people can say their double chin is visible on an MRI? Hilarious.

When I went into surgery to remove the tumor, I secretly hoped I wouldn't make it out. I didn't tell anyone this, because when you actually want to die, you don't want to make other people sad about it or have them try to save you. 

The surgery was unsuccessful, but I survived. The way my neurosurgeon described it to me, my tumor isn't like a raisin that you can just pluck out. It's a gooey blob stuck in and around my pituitary, which is at the base of the brain behind the eyes. 

What Does It Mean When Brain Surgery is Unsuccessful?
It means that my body kept producing massive amounts of cortisol (it controls stress, metabolism and blood pressure, and for now, my life), which means I gained even more weight. My body retained fluid, and my legs got so swollen that the only shoe I could wear besides flip-flops were Uggs. In Florida. So that was ... sweaty. I also got acne, really red skin, and a hairy face -- I'm talking side burns that you could literally braid. I was 25 years old, obese, hairy and zitty. Not the image I had in mind of my mid-20s.

I've had more brain surgeries than menstrual cycles in the last three years. Each time, there has been initial hope that the surgery was successful. Going into my second surgery, I was thinking about all of the things I still want to do with my life. The first read of my scan checked out. I was celebrating the news at Harry Potter Land when my doctor called again ... with bad news. They found residual tumor. I told him, "I have to finish my butterbeer. It's melting." I might have a brain tumor, but that doesn't mean I'll let a butterbeer go to waste. 

I don't think this is the 'Halo' Beyonce was referring to

Third time's the charm, right? Nope. After my third brain surgery, I got depressed again. After going to the doctor, they confirmed that my levels were insane, and gave me one other option to try before removing my adrenal glands (which would "cure" Cushing's, but give me another life-long disease). 

My fourth brain surgery was an intense dose of radiation that zaps the pituitary in the hopes that the tumor will die in a laser battle between good and evil. The surgery was performed by an amazing neurosurgeon (my very own Dr. McDreamy -- no joke), but the procedure did nothing.

I mean, this man BELONGS on a medical drama

Four Unsuccessful Brain Surgeries Later ...
I've re-gained 30 pounds since my fourth surgery, even while seeing a nutritionist and trainer and eating rabbit food. When I first started gaining weight, before my first surgery, I hid. I was living in my hometown and put on 50 pounds in three months -- it was incredibly embarrassing. I would run into people I hadn't seen since high school, and I wouldn't have the energy to explain that I have a brain tumor. I wanted to wear a sign that said, "I'm overweight because I have Cushing's, not because I ate donuts everyday for eight years." 

Before Cushing's, I was a size eight with a healthy BMI. Back then, I hated what I saw in the mirror. If I could go back in time, I would slap that girl silly. Now, I look in the mirror and think, 'Who is that monster?' Cushing's takes away your attractiveness and femininity and makes you feel absolutely disgusting about yourself. It makes you feel like you're not the person you used to be. I'm overweight because I have a brain tumor. But, to the outside world, it just looks like I'm a very fat person who doesn't take care of herself. 

Pre-Cushing's

At the height of my disease

Do I want people to know I have a brain tumor? Yeah, because, let's face it, overweight people get a bad rap. But if I tell people, the pity party starts. It's kind of hilarious, but when I tell someone I have a rare endocrine disorder, they say, "Oh, I never would have known!" It leaves me wondering, so ... are you going to treat me differently now? People are overweight because of things they can't control, and I'm one of those people. Trust me, 85 extra pounds is no joke. Essentially, I have a fifth grader strapped to my stomach. It keeps me from doing a lot of things I used to do. 

Is There a Silver Lining?
If there is, I haven't found it yet. But there have been some positives. 

Staying in touch with my friends and family and keeping people around who like me for who I am is how I've coped with this disease. A disease like this makes you realize what's important. It's not job security or how you look. It's what makes me happy, which for me is being in touch with friends and family. It's really cliché and silly to say, but it's what's on the inside that matters. I'm living proof of that.

I put more effort into my appearance now. I used to go shopping for clothes when I felt bad, but I avoid that now. Instead, I go to Sephora. Before, I was living in Ethiopia and heating my own water to take a bucket bath -- that's the only effort I put into my looks. It's weird, but I feel like I'm finally becoming a lady in my late 20s -- I do my hair and wear red lipstick and sparkly eye shadow. 

I've also come to terms with the fact that this is not my fault. For a long time, I thought this was karma -- punishment for not completing my Peace Corps assignment (which I know is crazy talk, because I got the tumor in Ethiopia. But tumors make you think crazy, people). I did everything I could do to be healthy and I was still gaining weight, so I know it's not something I can control. This disease came out of nowhere, and happened to an intelligent and healthy 24-year-old. It's not genetic or environmental, it just happened. While I spent most of 2011 and 2012 ducking out of photos, I've finally learned not to be ashamed of my body, my disease or my bouts with mental illness, because it's Not. My. Fault. 

My humor has been my saving grace. I'd rather laugh than cry about this, so I try to have fun with it. Laughing about things like being able to see my double chin on an MRI or trying to eat with a steel halo screwed into my head helps me to keep from going crazy. 

What's Next?
I was referred to an endocrinologist at Emory in Atlanta, who told me my case was too specialized. That was heartbreaking. If this disease isn't treated, it will eventually kill me, so I have some decisions to make. Removal of my adrenal glands is my only option left, but that means I'll stop producing cortisol altogether and I would have to take artificial cortisol to keep me from, uh, dying. Since cortisol keeps your fight-or-flight response intact, I asked my doctor, "If a bear is standing over there, will I have the ability to be like, 'F***! IT'S A BEAR', or will I be like, 'Heyyyyy, it's a bear! Neat!' My sense of humor is definitely getting me through this. The doctor reassured me that I should be able to run in that situation ... after telling me I'm weird and no one had ever asked him that. 

This is me -- for now

I'm not there yet, but the end is in sight. It's been three years since I started having symptoms. Three years, four brain surgeries, a lot of medication later, and I still have the biggest journey ahead of me. I never planned for this to happen, but it did, and there's nothing I can do about it. I just have to roll with the punches. In the meantime, I've learned to be comfortable in the skin I'm in.

To read more about Laura's story, you can visit her blog.

JANUARY 30, 2014  |  by LAURA  COPELAND,AS TOLD TO EMILY WOODRUFF

If you had told me when I joined the Peace Corps that, in 18 months, I'd be medically evacuated out of Ethiopia after falling into a suicidal depression, I wouldn't have believed you. If you had said that I'd spend the next 28 days in a mental ward, trying to convince a team of doctors that I was not, in fact, crazy, I'd have thought thatyou were crazy. If you had told me that, three years later, I'd still be battling the disease that prevented me from completing my service, I would have wondered, 'What disease?' I'm a healthy, happy 23-year-old about to embark on a life-changing adventure.' 

Pre-Cushing's

Ironically, the biggest "adventure" in my life wasn't joining the Peace Corps and working in Ethiopia, but it did start there. In January 2011, I stopped getting my period, my hair started falling out, I was gaining weight and I was feeling depressed -- out of character for me, since I usually laugh as much as I breathe.

I went to my Peace Corps doctor, who chalked it up to situational depression (somewhat common for a volunteer in that stage of service) and Polycystic Ovarian Syndrome -- all without any actual testing. By April, I had completely withdrawn from my life. I stopped going to work and corresponding with my friends and family, including the host family I was living with. I was flown to Addis Ababa, Ethiopia's capital city, where doctors diagnosed me as severely depressed and shipped me to Sibley Memorial Hospital in Washington, D.C., for treatment. 

I was in a haze -- totally shell-shocked. I had been immersed in a totally different culture for a year and a half, I hadn't slept in a week and the doctors had given me Valium. When I was told to sign my name on the dotted line for self-admittal, I did as I was told. And I was locked in a psychiatric ward for 28 days. 

Over the course of my stay, I was treated like a lab rat. I had blood work done everyday, a spinal tap, five MRIs, an EKG -- if it's done in a hospital, it was done to me. I was also put on four potent psychotropic drugs -- none of which I responded to. At one point, my psychiatrist suggested I undergo electroconvulsive therapy (ECT). I saw people on my floor after an ECT session and they were zombies for 24 hours. Even though I was in a fog of drugs, I had the wherewithal to say no. 

Because I wasn't talking to anyone and had shut down emotionally, my psychologist and psychiatrist assumed I had been raped in Ethiopia. They kept saying to me, "When you're ready to talk about it, we're ready to listen." But I wasn't raped, and I felt like they resented me for not being an interactive patient. 

Meanwhile, I was packing on weight. In three months, I put on about 30 pounds and my face was completely blown up. A Peace Corps nurse saw my passport picture, noticed the difference in my face size, and said I should be checked for Cushing's Disease, a rare endocrine disorder that makes your body produce crazy amounts of the stress hormone cortisol. 

Finally, a Diagnosis
I kept telling my doctors I wasn't crazy. Severely depressed? Yes. Did I need help? Yes. But not the kind I was getting. Finally, they told me (at 1 a.m., by shining a flashlight in my face) that I had Cushing's Disease -- my cortisol levels were off the charts -- and needed brain surgery. A nurse printed off some information from Wikipedia and said, "Here's a survivor story about someone who had this brain surgery and lived to tell about it." I was thinking, 'Is this really what my life is going to be like?'

The Source of My Sorrow: A Tumor
So that was my re-entry into America -- welcome home, right? My parents took me home, and I checked into Shands at the University of Florida. It took them one MRI (I had three at Sibley) to find a big ol' tumor on my pituitary gland. I had my first brain surgery in August 2011. By then, I had gained 50 pounds, I was covered in heinous purple and pink stretch marks and I had half a head of hair. Uneven weight distribution (skinny appendages with central obesity) is a symptom. My first endocrinologist gleefully remarked that it made me look like a giant lemon with toothpicks stuck in it. (Thanks, Dr. Asshole.) My new physical features didn't exactly help my depression (another side effect of Cushing's). 

How many people can say their double chin is visible on an MRI? Hilarious.

When I went into surgery to remove the tumor, I secretly hoped I wouldn't make it out. I didn't tell anyone this, because when you actually want to die, you don't want to make other people sad about it or have them try to save you. 

The surgery was unsuccessful, but I survived. The way my neurosurgeon described it to me, my tumor isn't like a raisin that you can just pluck out. It's a gooey blob stuck in and around my pituitary, which is at the base of the brain behind the eyes. 

What Does It Mean When Brain Surgery is Unsuccessful?
It means that my body kept producing massive amounts of cortisol (it controls stress, metabolism and blood pressure, and for now, my life), which means I gained even more weight. My body retained fluid, and my legs got so swollen that the only shoe I could wear besides flip-flops were Uggs. In Florida. So that was ... sweaty. I also got acne, really red skin, and a hairy face -- I'm talking side burns that you could literally braid. I was 25 years old, obese, hairy and zitty. Not the image I had in mind of my mid-20s.

I've had more brain surgeries than menstrual cycles in the last three years. Each time, there has been initial hope that the surgery was successful. Going into my second surgery, I was thinking about all of the things I still want to do with my life. The first read of my scan checked out. I was celebrating the news at Harry Potter Land when my doctor called again ... with bad news. They found residual tumor. I told him, "I have to finish my butterbeer. It's melting." I might have a brain tumor, but that doesn't mean I'll let a butterbeer go to waste. 

I don't think this is the 'Halo' Beyonce was referring to

Third time's the charm, right? Nope. After my third brain surgery, I got depressed again. After going to the doctor, they confirmed that my levels were insane, and gave me one other option to try before removing my adrenal glands (which would "cure" Cushing's, but give me another life-long disease). 

My fourth brain surgery was an intense dose of radiation that zaps the pituitary in the hopes that the tumor will die in a laser battle between good and evil. The surgery was performed by an amazing neurosurgeon (my very own Dr. McDreamy -- no joke), but the procedure did nothing.

I mean, this man BELONGS on a medical drama

Four Unsuccessful Brain Surgeries Later ...
I've re-gained 30 pounds since my fourth surgery, even while seeing a nutritionist and trainer and eating rabbit food. When I first started gaining weight, before my first surgery, I hid. I was living in my hometown and put on 50 pounds in three months -- it was incredibly embarrassing. I would run into people I hadn't seen since high school, and I wouldn't have the energy to explain that I have a brain tumor. I wanted to wear a sign that said, "I'm overweight because I have Cushing's, not because I ate donuts everyday for eight years." 

Before Cushing's, I was a size eight with a healthy BMI. Back then, I hated what I saw in the mirror. If I could go back in time, I would slap that girl silly. Now, I look in the mirror and think, 'Who is that monster?' Cushing's takes away your attractiveness and femininity and makes you feel absolutely disgusting about yourself. It makes you feel like you're not the person you used to be. I'm overweight because I have a brain tumor. But, to the outside world, it just looks like I'm a very fat person who doesn't take care of herself. 

Pre-Cushing's

At the height of my disease

Do I want people to know I have a brain tumor? Yeah, because, let's face it, overweight people get a bad rap. But if I tell people, the pity party starts. It's kind of hilarious, but when I tell someone I have a rare endocrine disorder, they say, "Oh, I never would have known!" It leaves me wondering, so ... are you going to treat me differently now? People are overweight because of things they can't control, and I'm one of those people. Trust me, 85 extra pounds is no joke. Essentially, I have a fifth grader strapped to my stomach. It keeps me from doing a lot of things I used to do. 

Is There a Silver Lining?
If there is, I haven't found it yet. But there have been some positives. 

Staying in touch with my friends and family and keeping people around who like me for who I am is how I've coped with this disease. A disease like this makes you realize what's important. It's not job security or how you look. It's what makes me happy, which for me is being in touch with friends and family. It's really cliché and silly to say, but it's what's on the inside that matters. I'm living proof of that.

I put more effort into my appearance now. I used to go shopping for clothes when I felt bad, but I avoid that now. Instead, I go to Sephora. Before, I was living in Ethiopia and heating my own water to take a bucket bath -- that's the only effort I put into my looks. It's weird, but I feel like I'm finally becoming a lady in my late 20s -- I do my hair and wear red lipstick and sparkly eye shadow. 

I've also come to terms with the fact that this is not my fault. For a long time, I thought this was karma -- punishment for not completing my Peace Corps assignment (which I know is crazy talk, because I got the tumor in Ethiopia. But tumors make you think crazy, people). I did everything I could do to be healthy and I was still gaining weight, so I know it's not something I can control. This disease came out of nowhere, and happened to an intelligent and healthy 24-year-old. It's not genetic or environmental, it just happened. While I spent most of 2011 and 2012 ducking out of photos, I've finally learned not to be ashamed of my body, my disease or my bouts with mental illness, because it's Not. My. Fault. 

My humor has been my saving grace. I'd rather laugh than cry about this, so I try to have fun with it. Laughing about things like being able to see my double chin on an MRI or trying to eat with a steel halo screwed into my head helps me to keep from going crazy. 

What's Next?
I was referred to an endocrinologist at Emory in Atlanta, who told me my case was too specialized. That was heartbreaking. If this disease isn't treated, it will eventually kill me, so I have some decisions to make. Removal of my adrenal glands is my only option left, but that means I'll stop producing cortisol altogether and I would have to take artificial cortisol to keep me from, uh, dying. Since cortisol keeps your fight-or-flight response intact, I asked my doctor, "If a bear is standing over there, will I have the ability to be like, 'F***! IT'S A BEAR', or will I be like, 'Heyyyyy, it's a bear! Neat!' My sense of humor is definitely getting me through this. The doctor reassured me that I should be able to run in that situation ... after telling me I'm weird and no one had ever asked him that. 

This is me -- for now

I'm not there yet, but the end is in sight. It's been three years since I started having symptoms. Three years, four brain surgeries, a lot of medication later, and I still have the biggest journey ahead of me. I never planned for this to happen, but it did, and there's nothing I can do about it. I just have to roll with the punches. In the meantime, I've learned to be comfortable in the skin I'm in.

To read more about Laura's story, you can visit her blog.

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