Finally!! Salivary cortisol meter on smart phone!!

Finally, the dream has come true. Testing your salivary cortisol can now be done on your iPhone with Point of Care (POC) technology. Join Dr. Friedman for a webinar informing the Cushing's and Addison's community on the newly available Peak Biometric Research Stress Management System that offers a quick, private, and non-invasive way to measure cortisol levels —without the hassle and expense of sending samples to a lab. Dr. Friedman will go over how to order and use the POC salivary cortisol monitor. He will explain that the product is not FDA-approved for diagnostic purposes and how to use it with commercial salivary testing. There will be plenty of time for questions and discussion. salivary cortisol webinar Sunday, November 19, 2017 6:00 pm  |  Pacific Standard Time (San Francisco, GMT-08:00)  |  1 hr   Meeting password: cushings join  the meeting at https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m7e4e4417ad6e72eb69aaffb547d5bbd9   Join by phone +1-855-797-9485 US Toll free You  can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by "chat" and the videoconference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

Join me! Be an Advocacy Troll

Fed up with endocrine info, I've been posting on the Facebook pages of EndocrineWeb and the American Association for Clinical Endocrinology posts where they could have easily included info about high cortisol and Cushing's. I'd like to think of it as "advocacy trolling." 😎 I encourage ALL Cushies to help me with this mission. Check twitter and get them there, too (one day I'll tweet but don't now!). Please like those two FB pages so you won't miss my comments and I'll see yours! Add other endocrine sites below so we swarm them with our advocacy trolling. 

We must have more contact with the endocrinologist community. There is safety in numbers. Endos dismiss us and ridicule us one on one behind closed doors, but together, we can show them how many of us there really are!

It's about time there was support for Cushing's!

I encourage you to create an account and read, Read, READ on Cushings-help.com.
It's free!

As you may have heard me say before, I learned so much of my Cushing's knowledge from the Cushing's Help website, founded by MaryO. I found the following blurb and I was just astonished at how much information is contained on one site.

The Cushing's Help message boards were founded on September 30, 2000. There are over 383,000 posts and 72,576 members as well as a chat room, photo gallery and much more. Over the years, we've surely covered your issues!

While many post on Facebook now, there is so much merit to posts organized by topics AND reading information about the person posting based on information they provide in their signature. For me, I was always watching the Cushies way deeper into their journey than me, and I ultimately would place more weight on those responses while still taking all comments under consideration. With facebook, there is no way to know what each person commenting has gone through (undiagnosed or three surgeries including a BLA). That makes it harder and more confusing to me. I encourage you to create a username and password and start reading! Learn something on your own. Read about others' stories... you will be quite amazed to see how relevant it is to you... even without posting a new topic about yourself. As much as we Cushies struggle uniquely with the symptoms as they present and how they affected our lives and relationships, you will learn that much of our experience also overlaps. Focus on that parts that are the same, and you will find yourself filled with more knowledge than you had before you started.

So get going.  And be sure to thank MaryO when you see her. She has maintained Cushing's Help single-handedly for over 17 years. Bravo MaryO and thanks to all those who posted about their lives on that site... YEARS before we even had Facebook!!

To join Cushings-help.org, click here.

Adrenal Crisis & BLA

Take a listen to JenS as she describes her Cushing's journey and adrenal crisis.

*Thank you to MaryO, founder of www.cushings-help.org, for creating this series of podcasts.

Addison’s Mum, 44, died after antibiotics don’t control UTI

Sarah Ann Parr, 44, wife and mum of two felt faint and dizzy after a family walk. She had taken antibiotics for a urinary tract infection (UTI), yet the medication failed to treat the infection.

For all you BLAers and post op Cushies, WATCH OUT for any infection that can whittle down the cortisol you take daily. The body uses cortisol to fight infections, so it will use up the medication you take orally, leaving you without enough to sustain vital bodily functions like maintaining blood pressure and metabolism. 

Rest In Peace, Sarah. 

You are gone but will not be forgotten. ❤️ 

http://www.leaderlive.co.uk/home/2017/10/20/gallery/mum-of-two-with-rare-disorder-was-found-dead-at-moel-famau-after-family-walk-97830/?ut=20171020091742976

Sarah and her family also went on a walk up Moel Famau in Wales, United Kingdom. 

     Distance: 5.9 Kms/ 3.67 miles

     Ascent: 298 metres

     Time: 2 hours

     Start and Finish: Moel Famau Car Park

A hike or any such physical activity would also require a patient with adrenal insufficiency to take more cortisol to cover the "work" the body must do to climb up the hills. This physical exertion plus fighting a UTI and E. coli was just too much for Sarah's body to handle. 

http://www.mudandroutes.com/moel-famau-from-moel-famuau-car-park/

The Matchstick Theory

Like many Cushies and folks who struggle with chronic disease daily, I've heard of the spoon theory. Some people love it and go ga ga for it.

Me:  Meh. 🤷🏽‍♀️ 

I mean I get it. 

I agree with it. 

It just doesn't describe how my days usually go and the multitude of nuanced choices I must make each day.

Tonight, I found my new substitute spoon theory!  I proudly bring you the Matchstick Theory. 

Cushing’s is Mysterious

Google Cushing’s Moxie

I have written over 350 posts about Cushing's in the past nine years. Even I have forgotten all I had to say about Cushing's—high cortisol, low cortisol—over the years. As I help others figure out their symptoms, I google myself. Well, I google Cushing's Moxie to find out what articles I've gathered or thoughts I expressed on the matter.

You can do the same!

If you care to know what I wrote about a particular topic, you can do google keyword searches like:

• Cushing's moxie buffalo hump
• Cushing's moxie cognitive
• Cushing's movie depression
• Cushing's moxie cyclical
• Cushing's moxie tips
• Cushing's moxie pituitary surgery
• Cushing's moxie adrenal crisis
• Cushing's moxie testing


Dear Google will bring you whatever is tucked away in this little blog of mine.

I'm in the process of reorganizing the blog into a functioning website to ensure all topics are easily accessible by topic, not just chronologically according to my life and the way I experienced it. Until that project is complete, try this way. It works for me!

Cushing's - Forget You!

In talking with other Cushies this week, it seems like so many of us are feeling down.

I started humming this song that my friend Cushie Steph wrote and recorded over five years ago. I knew it was just the thing for a quick "pick us up."

Enjoy!

Click to the youtube video below.

Cortisol Replacement after Surgery

I read lots of stories online about patients preparing for surgery and surviving post op. We hear that weaning off cortisol post op after having such high doses of cortisol damaging our bodies is akin to a person stopping heroin cold turkey. Really?! That sounds horrific and awful. Yet, we are all left wondering what is that mean in terms of symptoms. Everyone wants to get a sense for what is normal if the suffering they are feeling post op is normal. AND... wondering if and how they can get through it. 

When I read these posts, this is my reply. I wanted to share it here in hopes it helps folks who frequent this blog. 

What cortisol dose did you start after surgery? What cortisol dose are you taking now? We Cushies often need more cortisol than our docs give us post op. Many times, endos give patients 20/10 mg hc because they have all decided this is the proper replacement dose or physiological dose. Some patients follow their advice, suffer, but endure. As a 10 year veteran, what we have learned from each other in these groups is this: the cortisol surging through our bodies pre op / with cushing's was in NO WAY at physiological dose... not at normal dose. We all know we had excess cortisol. So why do they give us 20/10? This huge drop causes patients to live in a dangerous state of adrenal insufficiency. I know that many patients come online seeking help and relief, and the advice we tell them is the same--

Too much cortisol post op won't hurt you more than Cushing's already did (remember all that waiting?!), but too little post op can kill you. So how are endos so confident what is too little? They need to listen to us and see how we react, and if it is extremely difficult, we need to take more. 30/10 instead of 20/10. When my doc sent me home on 20/10, it took me going up to 40/20 mg hc a day to stabilize. Then I would wean by 5 mg a week then 2.5 mg when I got below 35 mg. Yes this makes recovery much longer, but it also means you survive. That's the goal, right? To survive this ordeal? So everyone, please be careful. You know your own bodies and when it comes to recovery from this dreadful disease, there is no one dose fits all solution. Be gentle with yourself, and if you face symptoms of adrenal insufficiency, please do not hesitate to take more. 5 mg hc under your tongue will make the meds enter your bloodstream faster. If you don't feel any lift or relief in 60 minutes, take another 5 mg. If you have more than three symptoms of AI, start with 20 mg and get fixed up faster. You are in control, and you will learn what you need. Yes it takes a long time to recover from the damage of this disease, but you can make sure you have enough to lessen the suffering. There is no tough it out, mind over matter to getting off steroids. You cannot will your adrenals and pituitary to wake up after surgery. They will do it when they are good and ready.  Please don't force yourself and end up dead. I say this because we have seen it happen. Don't let that be you. Please. All of us want to cross the line and win our race. It's just that our bodies have set the distance, and we have to keep going until the end without ever knowing when the race will end--quite cruel and certainly exhausting, but the goal is to be alive at the end. We Cushies will be cheering you along the entire way.

Limitations

Patient Advocacy

My Plea to Cushies

My Plea to Cushies & Those Who Love them

Please research patient advocacy. Please learn what it means to stand up for yourself or loved one. Please read up on how to be assertive, even with doctors, surgeons, everyone.

Some moderators and I are on high alert trying to convince people in adrenal crisis to get he care they need. They just can't or won't advocate for themselves. This is what I think of that, folks. It's serious. It's life-threatening. Let's learn something from all the Cushing's deaths surrounding us. Please. Those who care about you want the best for you, but we can't be there to do it for you. You worry us. Don't make us have to stress dose over you. Save yourself.

Houston woman, post op Cushie dies during Hurricane Harvey

Wife, Mother of 2, post op Cushing's patient dies without medical care during Hurricane Harvey's flooding

Photos featured in Houston Chronicle article, 9/5/2017

UPDATE (10/17/2018). The New York Times released this story recently about Casey's death after her adrenalectomy on the one year anniversary of Houston getting hit by Hurricane Harvey. It is gut-wrenching. I cried the whole time I read it. Casey should be here with us. Her death was preventable.

As post op Cushies, we have to ask ourselves: Are we prepared for all of life's unexpected emergencies? Do we have plenty of cortisol replacement, hydration drinks, Solu-Cortef vials and syringes?

Right now, we have to BLA sisters Michelle and Kelly are fighting to stay healthy after Hurricane Michael absolutely obliterated their communities near Panama City Beach, FL. They are living without water and electricity, in the Florida heat, as patients who are steroid dependent. They are struggling but they were prepared with extra medicine.

When we tell you that you must be prepared in an emergency, we mean it. We don't want to lose you. Please promise us that you will take care of yourselves.

Originally published on 9/6/2017.

I'll spare you waiting for the end of the article where it is mentioned and tell you now.

"Casey Dailey also was fighting Cushing's disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn't stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive."

Read Casey's heartbreaking story about adrenal crisis and Hurricane Harvey

********

I have deep regrets that I never had a chance to know Casey and help her, a fellow Houstonian.  My heart just breaks because she never got the chance to get well and to be herself again. Every Cushie dreams of that.

We Cushies send our most heartfelt prayers to everyone who knew and loved Casey. 

I direct this to all the Cushies who may read this page. The gofundme page mentions Casey died from a post surgery infection. While this seems unrelated to Cushing's, it most certainly is. Infections absolutely and unequivocally lower cortisol. In fact, the body uses cortisol to fight infections. Left without antibiotics and more cortisol, any post op Cushies could die from adrenal crisis. Hurricane Harvey and flooding kept our poor Casey from getting the help she needed. I am calling it adrenal crisis. I am confident that many other seasoned Cushies will see Casey's situation and symptoms and conclude the same. What will prevent you from getting the emergency injection you need? A stubborn endocrinologist who refuses to give you one because you will also be close to the hospital? We've heard many say that.  Will it be a traffic jam, being alone when crisis symptoms prevent you from calling for help? We Cushies just never know.

I want to encourage all Cushies to contribute to the fund set up for Casey's family. Every dollar counts. Please mark yourself as a Cushie when you donate. I want the family to see how the Cushing's community steps forward and helps another Cushie's family. I know I am like every Cushie when I say this. I fear every day that this will happen to me. If you share that fear, please contribute even $5, and share this page. Tell others who love you that this could have been you. Ask them to donate, too. Please.

https://www.gofundme.com/dillsdaileyfund

Here is Casey's mother-in-law initial entry on the gofundme page:

My name is Darlene and I am writing this on behalf of my son Wayne Dailey. On August 29, 2017 Wayne tragically lost his wife Casey as a result of the devastating flooding in Houston, TX caused by Hurricane Harvey - shattering their and our lives forever.

Casey was home recovering from major surgery (adrenalectomy) just before the storm and ensuing flooding occurred when she became very ill due to post surgery infection and needed immediate medical attention.  We worked fervidly to contact all the emergency rescue organizations to try to get Casey evacuated to emergency medical services. After trying somewhere between 24-48 hours to get rescuers to the family we went to social media pleading for help. We were finally able to get volunteers to try and reach them. 

Wayne carried their two young sons, Luke and Ronnie, across the street in chest high water to Casey’s parent's home to leave the boys with them in order to get Casey to emergency medical services as quickly as possible. In the process of the evacuation, Casey stopped breathing and in spite of exhaustive attempts by the volunteers and paramedics to revive her - Casey could not be brought back to life. Wayne was separated from his family by flood waters and could not return to them until the next day. There is so much more to this story and many of the details of the struggle to get the emergency services Casey so desperately needed have been left out.

 I cannot even begin to think of all the ways this will impact my son Wayne and two grandsons. Casey was a kind and loving person, a caring mother and wonderful friend to many. She was always willing to help others and reaching out to those she never met. Casey was the glue that kept family and friends together.

  Due to the economic conditions and Casey's illness they were already facing financial struggles and did not have life insurance. We are asking for any help you are able give towards immediate and future needs for the family’s many medical and funeral expenses. 

 We are setting up a fund and bank account where the donations will be deposited and specifically used by Wayne to pay for Casey’s funeral, medical expenses, immediate bills they may have and any unexpected expenses for Luke and Ronnie while Wayne tries to regroup and build a new life for him and his sons.

 Our hearts are filled with gratitude for everyone who worked so fervently to get help to Wayne and Casey and for the volunteers who risked their lives to rescue them-there are no words.  Any help will go a long way.  We extend our heartfelt thanks to all those who can help in this tragic moment that has left us stunned and overwhelmed.

*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-

To my fellow Cushies. I write this especially to you. I am sure that all Cushies grieve with me today and forever in the loss of Casey and so many others. We will add Casey to the list of all those we fight for every day.

Although we see far too many deaths, the Cushing's community will take our shock about every soul lost to this horrific and debilitating disease and fight for more Cushing's awareness for everyone involved in a Cushie's care: patients, patient's families, doctors, endocrinologists, ER physicians, nurses, emergency medical techs, firefighter emergency teams, and any medical professional who can save a Cushie's life from not enough cortisol -- an adrenal crisis -- with a simple $7 injection.

I am adding more documents on adrenal crisis below. Please save these to your smart phone, then send them to anyone who spends time with you to save on *their* phone. It can save your life. Please do this. 

Detailed SOLU-CORTEF actovial instructions with Photos

Detailed SOLU-CORTEF actovial instructions with Photos. These are the best and most thorough that I've ever seen. 

Add this to your emergency kit. Place it on your refrigerator. Add to service dog vest.

Train loved ones to save you! I mean, if they like is, they want to keep us around, right?! 💙💛💙

https://lookaside.fbsbx.com/file/SoluCortefInjection.pdf?token=AWwb4c4CLuRVn5T0-uTz9mO9lqJVILalGmfFsyvYL2tY_Hxcegi8-91j6teFGZsbSgB0xtTkXNLoL5NA4J28-wDaNertuIUCA420uHRNGiUJvc6GRbRvGhI1BeWwuvwTwFarE8usdLJc7vcj46Y6R9TQHwQPI_ANio2tTD2OHJ-570e-sBMBD-r-HGsKNE2seX0tZ-o8tbPv6Hy3gU5IvwlC

Choosing a BLA surgeon

(Updated September 5, 2018) How do you choose a BLA surgeon? What do you need them to say that will prove to you that will get every last one of those adrenal cells out of your body when they do your BLA? I share the questions I asked my BLA surgeon three years ago.

The internet is loaded with articles about how to choose a surgeon. Consumer Reports gives its suggestions. So does Forbes.

    part 1:  A respected surgeon says get a second opinion

    part 2: What surgeons know about picking doctors that you don't

Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). It also seems that Cushies have surgery with whoever their endocrinologists work with regularly and recommends, often describing those surgeons as "the best around."

I would argue that we need to be considering other things as well -- more medically-specific issues.

When the time comes for bilateral adrenalectomy or BLA, a Cushie has to choose the right surgeon. A google search didn't turn up much other than basic information from medical universities about Cushing's and BLA as a treatment. I did find this 2016 article Adrenalectomy for Cushing’s syndrome: do’s and don’ts, but doesn't help us when interviewing a BLA surgeon. The article tells us more when BLA is the best treatment, which is not what we are seeking.

I share so much information here in my little corner of the internet because the patient experience after BLA is nearly non-existent online. When Cushies search for information, I want them to find it. So I just post the list myself. My friends in the BLA group always help me learn more about this disease, so some of the knowledge I share here is as a result of learning from them.

I asked my BLA surgeon these questions in 2013. Yes, I asked all of these! Access to Information before making a decision is my right as a patient, and no surgeon is cutting into me without a thorough but friendly interrogation.

-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?

Retroperitoneal refers to a posterior or back approach, while anterior refers to a front or side flank approach.  The posterior approach allows for direct access to your kidneys and adrenal glands. The traditional anterior surgical approach requires incisions in your abdomen and requires surgeons to work around your liver, spleen, pancreas and colon. 

I had my BLA done via posterior approach. Here is one 2012 article I found about retroperitoneal BLAs. I did not suffer much pain pain post op so I didn't take many pain killers. I could move around easily because our bodies bend forward, not backwards, in our daily lives.  I know many people who have had their adrenal glands removed from the front or side. They experience a reasonable amount of pain and discomfort from the abdominal surgery, but they manage with cautious moving and pain killers. They survive and would do it again.JUST REMEMBER: Many doctors have been trained to perform BLAs either using the posterior or anterior approach, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.

-- How often and under what circumstances have you converted from a laparoscopic approach to an open BLA? 

-- How many BLA procedures do you perform each year?

A Cushie friend P asked me who performs adrenalectomies. Answer: general surgeons or bariatric surgeons. This 2009 article entitled Which matters more: volume or specialty? reviews the outcomes of over 3,000 surgeries performed by nephrologists and general surgeons throughout the United States It is recommended to go with the surgeon that does a high volume of these surgeries for a better outcome.

-- Will you perform the surgery or do you have anyone else assist you? 

I prefer you to do it. I do not give consent for a resident or fellow to participate in my surgery.

-- Will a robot assist in my surgery?
This is a real thing. You better ask. Then click here to see how many adrenalectomies are listed under the 'robot' column.

-- Will my weight cause any surgical concern?

-- How much exploration will you do to search for ectopic adrenal tissue?

Give permission and encourage surgeon to really explore the area. Causes for persistence or recurrence of endogenous cortisol production were incomplete removal of the adrenal glands and ectopic adrenal tissue, which could be identified in locations like the retroperitoneal fat, the gonads, or the mediastinum.

-- How do you handle the adrenal gland once detached? Do you bag the adrenal? 

My surgeon said he doesn't cut into the adrenals. He cuts them away from the blood vessels, bags it, removes it, and sends it to pathology. This keeps him from leaving any adrenal cells behind.

-- How do you ensure that you remove even microscopic adrenal cells? Do you scrape the adrenal beds?

I drilled my surgeons about rest tissue and making sure they got the fat surrounding the adrenals. How does he/she make sure all adrenal tissue is gone, out of hiding. You want them to remove all the surrounding fat. My left adrenal slid south below the kidney!! My surgeon said it was a "normal" congenital defect"--that's an oxymoron!  Your surgeon needs to explore and track it down.

-- The adrenal glands are fed by many vessels and nerves. How do you navigate around these to avoid damage to the kidneys and other structures?
The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.

-- Incidence of rest tissue or remnant tissue after you perform BLAs? (informal study from BLA group of 200 patients suggest 10%)
-- Incidence of Nelson's of patients (med lit says 20%)

-- Have you had any of your patients get sepsis? die 30 days after BLA?

-- Under what circumstances should I seek emergency help after I leave the hospital?
The surgeon may say things like fever over 102 degrees, oozing wounds, extreme pain or redness at the incision sites, etc. Doctor should give you a number for how to reach him in an emergency.

-- How much hydrocortisone is administered before the surgery and during the surgery?

100 mg Solu Cortef via IV push at both, or before and after. You want all of that all at once, not drip drip drip via IV over a few hours. Anesthesiology team needs to watch for low blood pressure during surgery, as this is a sign of adrenal crisis. Be sure to discuss this with surgeon in the office, anesthesiologist before surgery, and surgeon before surgery. It is always a good idea to ensure everyone is on the same page (even if we are the ones who need the reassurance).

-- How long do patients stay in the hospital?

-- Do the nurses that care for me post-op have special training on adrenal insufficiency?

-- How often will you come visit me in the hospital? Daily?

I want to see you every day!

-- When are cortisol levels checked post op in hospital?

-- How will we assess the success of the surgery with lab work? 

DHEA-S is a good measure to check since this is made in the adrenals only. After both adrenal glands are removed, the blood cortisol level can be measured to see if the operation was successful if the patient is not taking hydrocortisone. In this circumstance, the patient should be given dexamethasone for several days before blood work since hydrocortisone is measured in the blood test as cortisol and dexamethasone isn't. Most adrenal surgeons don't even worry about dropping cortisol and instead send the patient for post op labs for DHEA, basic metabolic panel (BMP), and complete blood count (CBC) between days 5 and 10. That DHEA-S level should be very low. Mine was less than 0.1. My endocrinologist Dr. Friedman said that was a ZERO. 

-- Who will write the orders for my hydrocortisone while I am in the hospital? 

-- How do I contact you if I am having trouble post op?
The doctor may say just tell the nurse, and the nurse will contact his/her office. That's all good except that most nurses are very hesitant to bother a doctor with all of the patient's questions. In our case, we need direct access to the surgeon and endocrinologist.  I have called the surgeon on my cell phone when the nurse wouldn't call after repeated requests. I have called the surgeon when the doc's fellows pay a visit and try to do something other than what the surgeon and I worked out at my pre-op appt. Don't be afraid to raise a stink and get the information you need. The folks there won't like it, but what can they do? Spit in your IV? No... you will be out of there soon, so be sure you get what you went there for.

-- When will my pathology report be back?

-- How often will I see you for post op appointments?

-- Would you be so kind to take a photo with me?
Since you are going to send this Cushing's in remission, this will be one of my before photos. I want to have a nice souvenir to remember us. 

Cushing's is as bad as Cancer

As Cushies, we often struggle to let others know how poorly we are doing. How can they possibly understand when they don't know with Cushing's is?!

It seems in some people's minds, it's not as bad as cancer. Only cancer is as bad as cancer. That proves to be a very myopic perspective and limited understanding of all the diseases of the world.

Take Cushing's for example. We Cushies know the devastation we suffer physically, mentally, and emotionally from excess cortisol.

Cushies, we now have a tool to help us. The general population knows about cancer and multiple sclerosis. The authors of MANAGEMENT OF ENDOCRINE DISEASE: The Burden of Cushing's disease: Clinical and Health-Related Quality of Life Aspects compares these well-known debilitating diseases to Cushing's.

As you can easily see, untreated Cushies really aren't very well.

• Cushies experience a lower quality of life than cancer patients in these categories:
  general health, vitality, social functioning, and mental health.
• Cushies suffer equally with cancer patients in these categories: bodily pain, emotions.
• Cushies fair slightly better than cancer patients in this one category: physical.

Yet, where is the compassion? Where is the support? Where is the community to surround a Cushie and load them up with freezer meals and casseroles?

I don't take anything away from cancer patients. It is indeed terrible and life-threatening. However, they don't have the monopoly on suffering, and we Cushies wish people would stop trying to make us feel better by saying we don't have it as bad as they do.

The plain fact is that we Cushies often don't have a support community other than the ones we build to support each other online. "Cushies doing it for ourselves" is a great slogan, but we need the support of our loved ones, both family, friends, and coworkers. This makes the pursuit of Cushing's Awareness all the more important.

Growth hormone for $0 a month!!

I found out recently that Humatrope does not charge a copay for people who don't have the money for it!! I now pay $0 per month!! I used to pay $60 per month and I have paid as little as $50 for three month supply.

How did I find this out? Well, I complained to the specialty pharmacy that filled the growth hormone that because they require me to fill it every month and refuse to fill a 90 day rx, it costs me more... instead of paying $60 a month for two months $120 and get third month free, this would force me to pay $180 for three months. This was unfair, and she said there was a plan. Not income based. Asked if I take it every day... yes. Do I have trouble meeting the financial obligations for taking the GH? Yes... i have 20 other medications I take daily. She said, ok your copay from now on is zero. WHAT?! I asked how that can happen, why would humatrope company offer to do that? She said that the insurance company still pays them monthly so the Patients amount is very small in comparison to the big chunk they get from insurance. So in order to get money from insurance, they let the patient have it for free....

https://copay.humatrope.com/success.cfm?43C4B6AC54F0EFEF8C7F5407DA8F3F4F13AC379A45AFD81D

The questions are:

Are you over 18?
MUST BE YES

Do you live in the USA or Puerro Rico?
MUST BE YES

Do any of your reimbursements for growth hormone medicine come from government entities like Medicare, Medicaid, Tricare, etc? THIS MUST BE NO

I'm so happy I stumbled across this, and I want to share it with all the Cushies out there who suffer from growth hormone deficiency after pituitary tumor(s) and pituitary surgeries.

Looking back at the path you chose

In case you haven't noticed, helping other Cushing's patients wade through the cortisol quagmire is kinda a big deal for me. I choose to spend my free time doing it. Why?

I don't like seeing others struggle. 

I don't like that Cushing's is ruining Cushies' lives. 

I don't like how poorly doctors treat us. 

I detest inefficiency.

So I do my best to take time and answer questions from blog readers and facebook friends.  Tonight, the post was about ketoconazole. The Cushie had gone to the emergency room twice for adrenal insufficiency and adrenal crisis while taking ketoconazole. 

I remembered that I too took ketoconazole. My memory isn't what it used to be, and as such, I set out to search for the word keto on this blog, for so much time has elapsed that my Cushie brain can't hold the details any longer. Fair enough. 

I found the link I wanted (Keto: It Was Fun While It Lasted), but I found the post that proceeded that one by just three days called New Chapter of my Life dated November 3, 2013.  I shared the link for you to review if you are so inclined.

I read through this lost post wondering what was the new chapter of my life. I don't remember any new chapter of my life?! I was floored with emotion as I read my own words recounting the story of my decision to proceed with a bilateral adrenalectomy, which doctors often dissuade us from considering because BLA is the last resort treatment for Cushing's. 

The phrase, "I did everything the medical community asked of me" really hit home. Because don't we all? Aren't Cushies pushed beyond the point we can handle emotionally, mentally, and physically every single day and somehow manage to fight on until the day we reach remission? Does anyone remember my explanation for how statistically rare it is to have Cushing's and yet, we do? Cushies have hit the unlucky jackpot? for Cushing's.

BLA is not easy. It has taken many, many days to get to know my body and what it needs. I do stand tall in the explanation that I made to myself at that time, as it is still one that stands up to reason and emotion. It stands the test of time. 

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

I will post one day soon about the improvements I've experienced since BLA. I will foreshadow that it is difficult to parse out what long term effects are from Cushing's and high cortisol and what I can blame on rheumatoid arthritis. That's for another day.

See you soon, Cushies.

Are Patients Screened for Cushing's before Gastric Bypass?

Do doctors screen obese people before gastric bypass for Cushing's? I doubt you are surprised that docs don't. Our friend Robin explains more on her Cushing's blog, Survive the Journey.

http://survivethejourney.blogspot.com/2009/02/bariatric-surgery-not-answer-for.html?m=1

Could Actress Lauren Ash have Cushing's?!

Tonight I switched over to Hollywood Game Night after watching American Ninja Warrior with the family. My eyes were immediately drawn to an actress I have never seen before. Her name is Lauren Ash and she currently stars on the TV show Superstore.

As soon as the show finished, I took to google images. I went through many photos of Lauren. She is stunningly beautiful with delicate and lovely facial features. I noticed her weight increased over the years. Then, I sent Lauren Ash the following tweet:

After I sent the tweet, I created a few collages. Are my instincts about Cushing's on point?

Photos of Actress Lauren Ash show facial plethora (red cheeks) and moon facies (weight gain in neck), both classic Cushing's symptoms.

We Cushies have always made the difficult decision to approach a person we suspect of Cushing's or leave them alone so we don't embarrass them or us. It has always broken my heart to walk away and risk leaving a person undiagnosed when I held the possible answer. So today, I sent the tweet, and I hope I can help Lauren or anyone else out there who reads this blog.

I'll let you know if I hear back!

Addison's and Surgery

Woo hoo!

"The ADSHG surgical guidelines have been given a makeover! 

The new-look guidelines are available on the website, with print copies in the hospital folder available in the online shop. The core prescribing information remains the same, explaining what level of extra medication and monitoring you will need in the event of most types of surgery or dental work.

New information gives the level of continuous infusion cover recommended, in line with the recently issued guidelines from the Society for Endocrinology. The ADSHG surgical guidelines also now include citations and a list of endorsing clinicians with an interest in adrenal medicine. This includes some past speakers from the ADSHG's medical lecture series. 

Links below to get your copy: 

Free to download

Blogger's direct link: 

http://www.addisons.org.uk/forum/index.php?/files/file/4-adshg-surgical-guidelines/

https://goo.gl/hcoqCa

Online Shop: https://goo.gl/y3BM6p

#AddisonsDisease"

I left this comment on the ADSHG Facebook page. 

Thank you, ADSHG. We Cushing's patients who've undergone bilateral adrenalectomy in the United States ❤️ your materials as do the Cushing's patients who need guidance after pituitary surgery while they are in an adrenally insufficent state. We are very thankful for you and the Addison Clinical Advisory Panel, the group of doctors in the UK who treat adrenal disease. 

In Memorium: Cushies We Lost

MaryO, founder of Cushing's Help online does the solemn job of maintaining the In Memorium list of Cushies we lost (among her many jobs). I am so thankful that she does. 

MaryO wrote, 

"I am so sorry to read that we have lost another Cushie :(  The "In Memory" pages are growing far too quickly. Rest in Peace, Kalyn :("

http://www.cushings-help.com/memoriam.htm

Your Part in Cushing's Awareness

In response to my previous post about Kalyn's death, someone in a Cushing's group said she didn't know Cushing's led to death and that more awareness needs to be done.

I replied:

"I totally agree with you. This shouldn't be happening, but it happens a lot--2-3 times a year THAT WE KNOW OF. Many Cushies never reach out online to find others like them. They never find our safety net... and we lose them as they fall through the cracks.

We have lost MANY to Cushing's in the last decade I have sought diagnosis, treatment, and remission. Many of us have been trying very hard to create awareness.

I created a blog 9 years ago to share my story, medical research, and create a patient presence on the internet at a time horse and dogs had websites dedicated to Cushing's but humans didn't (true story) and before the time we used Facebook or even had cushing's groups.

Some of us have attempted to turn April into Cushing's Awareness Month by blogging every day instead of just posting Cushing's Awareness Day on April 8. Moreover, others won't participate. For unknown or personal reasons, many do not share info and photos about Cushing's and Cushies through FB, when so many have hundreds and thousands of friends connected to us on FB pages. Actually, I know the reason Amy don't share on FB. I suspect that Cushies' fear this would invite further humiliation disbelief, interrogation, and isolation from their "family" and "friends." Not sharing our experiences and horror stories cripples us significantly in our fight for Cushing's awareness.

Sharing another Cushie's FB post or creating your own infographics are such simple and effective ways to get the word out. Maybe 5 people read your message. With thousands of Cushies online, that's leads to thousands of people who learn about Cushing's.

If you want to create awareness, please, do your part.

I invite you to like my FB page Fight Cushing's with Moxie and visit my blog: http://cushingsmoxie.blogspot.com.
Share my posts freely on FB or email.

I chose to create awareness in this way. I encourage anyone to create blogs or even just share FB posts. Please make a commitment to do this. It makes a difference.

It is my strong belief that when every Cushie must does his or her part to create awareness, I mean with persistance and prevention in their heart, we will begin to reduce diagnosis times (some suffer 7-20 years!) as we pull Cushies from near and far into our Cushie safety net.

Once we meet a Cushie who understands us, we never let them go.

PS A keyword search for "death by Cushing's" bring up quite a few articles and blogs that demand reviewing.

Rest In Peace, Kalyn

We lost another Cushie sister today, Kalyn Allen. Her husband posted these updates: 

Yesterday he posted:

Kalyn is in critical condition in the CV-ICU at St. John's in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can't move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support."

"This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.  

My heart breaks reading that. 

Thank you to our Cushie friend Nancy for befriending Kalyn and notifying us of her tragic death. Thank you to Carla, Nancy's niece, for reading Kalyn's story and connecting her to Nancy.  We often say that it takes a Cushie to understand a Cushie. Cushie friends are amazing, supportive, and essential.

Family and friends of Cushies, please stay on high alert. Cushies talk a lot about Cushing's because when we feel compelled to create awareness so others won't suffer needlessly alone, blaming themselves for weight gain and disfigurement.

The rest of her story can be seen im on Kalyn's YouCaring page. Take a few moments to read it. Her Cushing's came on very quickly--diagnosed late 2016'with pituitary surgery (-ies ?) in May 2017. Kalyn's page offers more details. Please consider donating any amount to help this family recover financial from this. 

https://www.youcaring.com/kalynallen-786017

The Cushing's community has mourned too many deaths of friends in the past. This can't keep happening to Cushies. I'm so sorry, Kalyn. I send my condolences to her husband, children, parents, family, and friends. We will always honor you, Kalyn, as one of us. ❤️