Tuesday, July 18, 2017
Friday, July 7, 2017
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.
Thursday, July 6, 2017
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:
|Photos of Actress Lauren Ash show facial plethora (red cheeks) and moon facies (weight gain in neck), both classic Cushing's symptoms.|
I'll let you know if I hear back!
Saturday, July 1, 2017
"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:
Online Shop: https://goo.gl/y3BM6p
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.
Wednesday, June 28, 2017
"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 :("
"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.
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.
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. ❤️
Saturday, June 3, 2017
Office staff is friendly and very responsive to mychart messages and refilling meds.
Dr. Sasan has a calming and reassuring bedside manner.
He always asks me, "How does that sound to you?"
Dr. Sasan is open to all my questions and analyses of labs and symptoms. I spend 30-50 minutes with him. He answers all my very nuanced questions.
This is so refreshing after seeing at least 10 arrogant, think-they-know-it-all endos who brazenly dismissed my Cushing's--cortisol ups and downs (cyclical) and reoccurring--for years.
Dr. Sasan asked me how often I'd like to see him. I feel most comfortable with every three months. He allowed me to set up my appointments for every three months for a year out. There is piece of mind knowing that I can get labs and discuss them with him often. Changing Texas seasons means big dose changes to fludrocortisone, so I find comfort with access.
I highly recommend Dr. Mirfahkrhee.
For those in DFW who have seen other doctors at UTSW and staff said you can't transfer to another endo, Dr. Mirfahkrhee said he has never heard of this. He said he would be happy to see all my Cushie and BLAer friends!
For those who can't make it to Dallas for your endo appointments, please use this as a checklist of the type of doctor-patient partnership we Cushies need and deserve.
Tuesday, May 30, 2017
Tuesday, April 11, 2017
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.
Have you heard of Percy Lavon Julian and his contributions to the Cushing's and Addison's community?
|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:
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.""
- For those of you in education, how about teaching a lesson on Percy Lavon Julian?
- For the chemists and science folks, want to build a steroid?
- Still can't believe you don't know about Percy Lavon Julian and want to share with friends and family? Looking for a role model for the children of Cushies and Addies or your own kids?Buy the PBS DVD for $12.99 here.
- high cortisol
- low cortisol
- brain fog
- 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.
- 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
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).
- sleep medicine for sleep apnea due to weight
- physical therapy
- 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
- 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)
I also rely on my PCP and endocrinologist as a team for my medical health.
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?!
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."
Saturday, April 1, 2017
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 he 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.
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 ya soon.
~ Moxie Melissa
Tuesday, March 28, 2017
|From Robin @ http://survivethejourney.blogspot.com/|
Sunday, March 19, 2017
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."
Tuxie and Moxie train with Service Dog Express. www.servicedogexpress.com