Tuesday, April 11, 2017

Day 5: Cushie Stories -- share your before and after photos

When I first started my blog in June 2009, I went through the painful process of posting photos that showed how Cushing's and high cortisol has changed me.

You can see the original post here.

So much has happened in the years. I will be working to collect some additional before and after photos to depict my life since my Cushing's discovery.

Will you help me help others by making one of yourself, too?

I'm working on a video presentation that will include these photos of Cushing's patients before Cushing's, during Cushing's, and after treatment for Cushing's. If you would like to participate, send your photos to me via email at moxiemelissa (at) gmail.com. I will compile submissions through the end of April. Those I receive before the month's end will be included, so please be sure to send them in soon. I have big plans for this presentation. I will share more in the coming year.

In addition, if you want to write your whole story up and include photos, please send it to me to the same email address. I want to share all kinds of stories from all kinds of Cushies, so please send me something so I can share with our community.

Take care. 

Day 4: 'Ugly disease' left Scottish woman with a round face and buffalo hump

Cushing's Awareness Month, day 4.

Syndrome nicknamed 'ugly disease' left Scottish woman with a round face and a 'buffalo hump'

The debilitating Cushing's syndrome causes unsightly and unusual weight gain and zaps sufferers of energy.

  • 09:34, 21 MAR 2017
  • UPDATED09:43, 21 MAR 2017
    • Daily record

Two years ago Liz Sneddon would cycle 50 miles a day, now she struggles to walk around a supermarket after being struck down with “ugly disease”.
She has Cushing’s syndrome, which has another, equally cruel, nickname – Moon Face.
In September 2015, Liz was caring for her dying mother Mary when she started to feel poorly herself.

Day 3: Happy Birthday to the Steroid Chemist, Percy Lavon Julian

Have you heard of Percy Lavon Julian and his contributions to the Cushing's and Addison's community?

"The grandson of Alabama slaves, Percy Lavon Julian met with every possible barrier in a deeply segregated America. He was a man of genius, devotion, and determination. As a black man he was also an outsider, fighting to make a place for himself in a profession and country divided by bigotry—a man who would eventually find freedom in the laboratory. By the time of his death, Julian had risen to the highest levels of scientific and personal achievement, overcoming countless obstacles to become a world-class scientist, a self-made millionaire, and a civil-rights pioneer." ~PBS website

So you may never heard of him, but Google images shows that we may be the among the few that don't know about this amazing man is.

The grandson of slaves, Percy Lavon Julian overcame racial barriers to achieve scientific, business, and personal success.

I owe this post to my Cushie and BLA friend Trisha, who brought PLJ to my attention. In her words:

"This doctor is almost as important to people with Cushings as Dr. Harvey Cushing and I just learned about him today. 

Percy Lavon Julian (April 11, 1899 – April 19, 1975) was an American research chemist and a pioneer in the chemical synthesis of medicinal drugs from plants.[1] He was the first to synthesize the natural product physostigmine, and a pioneer in the industrial large-scale chemical synthesis of the human hormones progesterone and testosterone from plant sterols such as stigmasterol and sitosterol. His work laid the foundation for the steroid drug industry's production of cortisone, other corticosteroids, and birth control pills.[2][3][4][5]

He later started his own company to synthesize steroid intermediates from the Mexican wild yam. His work helped greatly reduce the cost of steroid intermediates to large multinational pharmaceutical companies, helping to significantly expand the use of several important drugs.[6][7]""

There are countless websites extolling praise on Percy Lavon Julian now, but back then, he was denied tenure despite his accomplishments because of his race.
This was only on the first page of the google results. There are pages and pages more. I mean it. 
I never heard of Percy Lavon Julian before today, but he is the reason Cushies survive after pituitary surgery and the reason BLAers like me can finally be free of excess cortisol. Even though Harvey Cushing discovered the disease and surgery for it, Percy Lavon Julian is a hero for all Cushies and Addies. As such, I will celebrate him every April 11th going forward. I hope all of us will do the same.

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/medicalonline-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."