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. :)