Day 2: Good News + How Many Doctors does a Cushie require?!

Hello all.  I'm on Day 2 of the Cushing's Awareness Challenge for Bloggers.  As you can see, it is now April 11th. I believe I stated before that I will make 30 posts in April, not that they would be done daily. :)   I hope you will forgive me.

If you are a Cushing's patient or "Cushie," you will not be surprised that my blogging is off scheduled from ... well, multiple causes:

• Cushing's
• Addison's
• high cortisol
• low cortisol
• brain fog
• anxiety
• procrastination
• facebook
• email
• text
• performance pressure
• the words "deadline" 
• "done today" 
• "everyone is waiting on me"
• "but I made a promise" 
• "I will disappoint everyone" 
• "I have so much to do"
• + any other symptom(s) that decide(s) to STAND UP and BE HEARD that day.

and other delays from being a patient with chronic illness:

• calling the insurance for preauthorization on procedures, surgeries, imaging, growth hormone injections
• calling the insurance for review of benefits
• calling the insurance for error in claim(s)
• calling the insurance for prescription pricing and coverage
• calling the insurance for specialty injection for adult growth hormone deficiency
• MyCharting/calling the doctor(s) for appointments, questions, requests, refills
• checking MyChart for appointments, lab results, and imaging reports
• studying every word in the lab results and imaging reports

So, it is this last one that I decided to focus on today.

Regular readers (some o' y'all tell me it's true!) know that I advocate for patients to self-advocate as well as to promote cortisol imbalance awareness (Cushing's, Addison's, Adrenal Insufficiency).

I want to share one way I do decipher imaging reports with online medical dictionaries, such as merriam-webster.com/medical, online-medical-dictionary, drugs.com/medical_dictionary. Anyone who has searched the internet knows how to enter keywords.  Then what?  

This is happening to me today, and I had to stop and share it.

I am reading the report from x-rays I had of my hips from mid March, just about a month ago. These images were taken 20 minutes before my appointment with a orthopedic specialist/ surgeon. I met the doctor, and he said he sees some inflammation in my pelvis but the medicine I take for rheumatoid arthritis will also help the inflammation in the hips and low back. WHOA!  That's good news. I don't often get good news. I mean, actual "that pain will go away," "that tumor is history," or "these lab results explain your complete symptomology!"  Uh uh.  

I hear more of "I'll write a referral/ send your case to the ... 

• sleep medicine for sleep apnea due to weight
• rheumatology
• physical therapy
• dermatology
• mineral endocrinology (I know, right?! that's another post)
• allergy and asthma
• ophthalmology for cornea (contacts for keratoconus) and retina annual exams for RA med (more later) 
• sleep apnea
• ob/gyn
• advanced ob/gyn ("for female hormone stuff)
• nutritionist (August 2017)
• orthopedic hip speciality
• pain specialist 
• pain clinic with TWO doctors (physical therapist, psychiatrist = summer 2017)

That's 12 doctors I've seen since I started as a patient as UTSW in Dallas and three I'll add by the end of summer. 15 doctors!

Did you notice anyone missing?!

I also rely on my PCP and endocrinologist as a team for my medical health.

I see a chiropractor regularly to work out back pain.

I cling to my psychiatrist and psychologist for my mental and "behavioral" health. All are wonderful and *actually remember* what I told them last time. Novel concept for a doc these days and a total plus, right?! 

So add 4 more doctors. That's 16 doctors now plus 3 by the end of summer.  That's 19 doctors! I CAN'T WRAP MY HEAD AROUND THAT. Yet, this is the reality that many Cushies find themselves in.

Let's remember, folks. I am in remission.

My first pituitary surgery was June 18, 2009.
My second pituitary surgery was April 20, 2011.
My BLA was December 31, 2013.

I am more than three years post op BLA, and I still need all those doctors to find treatment and comfort for all that lingers after cortisol excess damaged my body.

Cushing's is not joke. It doesn't mess around.

Will this all happen to you? Will you need this much help this long after treatment?  I don't know. No one knows, not even the doctors who tell you that "you are cured, stop worrying." Cushies know better than to use the word "cure." We say remission, and still fear the day that high cortisol symptoms decide to say "Hello. I'm back."

Day 1: Blogging with the Cushies, featuring Alicia and The EPIC Foundation

Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing's patients and others with invisible diseases. In 2017, Karen debuted EPIC. 

Please take a moment to read about EPIC Together's Person of the Month, Alicia Held. 

Alicia had battled Cushing's for a long time but remains tenacious, positive, and helpful, sporting with her signature smile in many personal photos she shares with the EPIC Together readers. 

Do you see yourself in Alicia's story?

http://www.epictogether.org/alicia-held

While you are there, spend some time reading about the work of The EPIC Together Foundation and become a subscribing member. 

Day 1: Blogging with the Cushies, featuring MaryO

MaryO kicks off Cushing's Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven't been tested this way. 

"A Faster Way to Diagnose Cushing's" (National Institute for Health, February 2017)

https://cushieblog.com/2017/04/01/a-faster-way-to-diagnose-cushings-syndrome/ 

Day 1: BIG news month. Don't miss it.

Hey hey, what do you say?
Cushing's Awareness Month starts today. 
H O O R A Y !

Am I cutting it close or what? 11:55 pm on day 1 of the blogging challenge. 

I want to tell you that my life has undergone great change in the past year.  I hope you will visit us often. Will this blog reach one million page views this month? At 922,000, we don't have far to go. 

For 30 days in April, I will be blogging about:

~  My 10 year anniversary with Cushing's!! How did I survive

~  A Decade to Wellness: Moxie's full Cushing's story all in one post + never before seen personal photos

~  All things Cushing's: what the docs should know. New journal articles about hypercortisolemia, panhypopituitary, adrenal insufficiency, and adrenal crisis in the medical literature 

~  Training Tux. Follow along to see how Moxie trains our service dog to detect cortisol for me and blood sugar for my husband plus many basic dog commands without ever having owned a dog before. This gets comical. 

~  My new rheumatoid arthritis diagnosis and how high cortisol sets many Cushies up for autoimmune disease after remission. Bonus: are rheumys better than endos?

~  Prednisolone: my success with a relatively unknown cortisol replacement 

~  Weight loss 3 years after BLA: it is finally happening. You'll never guess that our old, ubiquitous nemesis Metformin is now the hero

~ Growth hormone insufficiency landmines: why are endos hesitant to prescribe this after Cushing's pituitary surgery and how to deal with predictable delays and deliberate stalling by the insurance companies

~  Korlym: how doctors are prescribing it in 2017 vs. 2013 when it was first approved by FDA (hint: follow the money). Disclaimer: I own stock in Corcept Therapeutics. See full disclaimer on the side bar to the right).

~  Cushies make headlines: Follow up on the Cushies we've seen in the news

~  Patient spotlight in Cushing's right before your eyes. See the many faces of Cushing's in patients' before and after photos 

~  Life after BLA: Words of Wisdom from Cushies about controlling cortisol, taking medicine every day, and living with the ever-present threat of adrenal insufficiency and adrenal crisis. Is it better or worse than endos threaten it will be?

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

Be sure to like my new Facebook page: Fight Cushing's with Moxie on Facebook. 

Forward those posts to your friends, family, and community to help spread awareness for Cushing's. 

SUPPORT CUSHING'S BLOGGERS ALL APRIL by forwarding their blog posts to your FB peeps. Let's make it our goal to make them see the word Cushing's twice a day for 30 days!  We can do it, everybody!

Thanks for stopping by. See y'all soon.
~  Moxie Melissa

10 years ago today

From Robin @ http://survivethejourney.blogspot.com/ 

10 years.

3,652.5 days.

87,660 hours.

5,259,600 minutes that I have suffered since the very first time I saw the word that would change my life forever: CUSHING'S.

What else can I say besides Rare, Real, Relentless?

I'll give it a go.

debilitate

[dih-bil-i-teyt]



verb (used with object), debilitated, debilitating.
1. to make weak or feeble; enfeeble

devastate

[dev-uh-steyt] 

verb (used with object), devastated, devastating.

1.  to lay waste; render desolate:  Synonyms: destroy, despoil, raze, ruin

2.  to overwhelm.

unfair

[uhn-fair] 

adjective

1.

not fair; not conforming to approved standards, as of justice, honesty, or ethics:

2.

disproportionate; undue; beyond what is proper or fitting



It is quite something to sit here after all this time has passed. These three words describe so much of my reality with Cushing's. I wish it were over, but there is always something. It is so difficult to sit here and think that 10 whole years were stolen from me, completely took me off course, changed the trajectory of my husband and family forever. It makes me happy in one way that I survived it. I am still here. There were countless days when I was suicidal and wondered if I could make it through the next five minutes. When I wasn't suicidal, I was wondering if it would every stop and if Cushing's was going to stop, when? I was and am so sick and tired of being sick and tired.

Some have asked what I know now that I didn't know then?

Ten years is a very long time -- long enough that I hoped all of this disease would be far behind me yet not long enough to see Cushing's leave my body fully. 

I am no longer a healthy person. 

I no longer believe all things are possible for me. 

I no longer see myself as free and limitless. 

I'm not down. I'm not depressed. I'm pragmatic. This is the way my life is now.

I have made the best of it. I will continue to do so. I survived. So will you. I don't always know how, but I know that if we arm ourself with knowledge and support from the Cushie community, then I can make it. We can make it.  I talk to myself as much as I speak to any readers still out there. Ten years is a very long time to be sick. 

Yet each day I am here, it's a little bit of a miracle. 
One more day I spend with my husband, together for 12 years and the entirety of my Cushing's mission.
One more day I get to spend with my daughter and watch the world in wonder with her.
One the good days, the few good days, I'm fine. Life is different. I don't go around much. I get everything delivered. I don't make plans with friends or pursue my life's goals and dreams. I wish I could figure out how to make room for that. I need more of that. More of me. Maybe I will discover more of me as Cushing's recedes. Maybe it's been me this whole time. I sometimes feel like an alien in my own body. Like, I know it is me, that I went those places and had those experiences. Yet, it is so foreign and unexpected that I don't recognize this life that I live, mostly homebound, with so many dadgum limitations. Too many CAN'Ts that will never COULDs.
Perhaps this is just a life journey like anyone else's. Perhaps this is my path to find the meaning of life. Whatever it is that I am supposed to know, I hope that I'm not too tired or asleep to know it when I see it.

~ Mox

*********
Please note that Cushing's Awareness Month is coming up in April, just a short few days away. Once again, I will be participating. I hope to do better than I've done in the past about blogging every day. There are many updates in my life, in what I've learned about Cushing's and what continues to surprise me about life after BLA.  I hope you will come by and visit again in April.

Also, check out my FB page Fight Cushing's with Moxie.  

Bye for now.
Mox

Canines and Cortisol

These Dogs Save Lives By Smelling People's Breath

MAY 08, 2014

"The fact that dogs can sniff out cancer is pretty miraculous, but that’s not the only disease canines know how to catch with their incredible olfactory abilities. Medical detection dogs -- who have been trained to sense the symptoms of a range of illnesses -- perform a unique service unlike the typical assistance dog, alerting their owners to physical problems that might otherwise go unnoticed. Thanks to the work of Claire Guest, a doctor who founded the UK-based charity Medical Detection Dogs, dozens of lives have been saved (and improved) because of disease-sniffing dogs."

Continue reading the article at this link:
https://www.thedodo.com/community/jennykutner/these-dogs-save-lives-by-smell-542022566.html

Tuxie and Moxie train with Service Dog Express. www.servicedogexpress.com

keywords: service dog, Team Tux, medical alert, cortisol detection

New Service Dog!!

Hey everyone. I have some very exciting news!

Today my family got a service dog, Tux. He will be trained to detect cortisol for me and blood sugar for my husband who is a type 1 diabetic.

Follow along this new journey. Go like our Facebook page, called Fight Cushing's with Moxie.

And stay tuned, because April is Cushing's Awareness Month, and my 10th anniversary with Cushing's.  Lots of new stories coming up.

-Moxie

key words: service dog, Team Tux, medical alert, cortisol detection

Health Care is No Privilege

"Health care is no privilege. 

Good medical coverage means that unfair financial burdens don't cause more hardship and pain than the already difficult and often insurmountable struggles to get well." 

~me, 10 minutes ago, 3/3/2017

Keep fighting until you get better

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

 

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

Tips to Steady your Feet & Get Diagnosed Quickly

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

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

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

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

TRUE STORY!! 

(🐶 + 🐴) x info > 👩‍💻 

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

My friend Tami finally found help for Cushing's

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

Daily Freeman Journal

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Three year BLAnniversary

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

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

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

Happy New Year to all y'all.

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

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

• Obesity (lose weight, lose symptoms)

• Polycystic ovarian syndrome (PCOS)

• Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

• Back and muscle pain

• Diabetes

• Blurred vision, visual field loss, double vision

• Chronic fatigue syndrome

• Dry, oily, or sweaty skin

• Impotence or infertility

• Joint pain, joint/bone abnormalities

• Migraines

• Muscle weakness, carpal tunnel syndrome

• Temporomandibular joint/TMJ/jaw joint pain

• Thyroid imbalance or "slow metabolism"

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

• Facial redness

• Rounding of the face (moon face)

• Unexplained weight gain around belly

• Buffalo hump, or hump on back of neck

• Pink or purple stretch marks

• Thicker or more visible body and facial hair

• Acne

• Muscle weakness (difficulty standing or climbing stair)

• Extreme fatigue (no amount of sleep is enough)
• Depression, anxiety and irritability
• Pink, red or purple stretch marks along your abdomen, arms, or thighs
• Thin and fragile skin that bruises easily
• Slow healing of cuts, insect bites and infections
• Bone thinning (osteopenia, osteoporosis), easily broken bones
• Recurrent infections
• Sleep disturbances, night sweats, awake at midnight or 4 am
• High blood pressure
• Diabetes mellitus
• Irregular or absent menstrual periods in females
• Clotting disorder

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

Read: Doctors 'more likely to misdiagnose patients' if they are 'difficult' (March 2016)

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

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

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

772,998 page views.

WOW!

2016 not 2015. Mistake from a Cushie Mind.

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

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

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

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


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

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

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

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


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

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

Wow! Updates to Addison's Owners Manual

Hi friends! I'm still alive and kicking!

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

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

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

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

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

Here is the link to see the original 2000 owners manual (officially called 

Living with Addison's disease – an owner's manual for individuals with the condition) and be sure not to miss the new 2015 documents that are now hyperlinked below that.

http://www.addisons.org.uk/forum/index.php?/files/file/99-addisons-disease-owners-manual/

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

Life as a Cushie

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

PNA: Cushing's at 16

Copyright Robin and Pituitary Network Association, 2015.

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

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

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

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

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

Feel like talking and typing

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

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

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

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

You are a doctor. Have a heart.

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

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

It's not our fault we are so extraordinary!

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

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

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