❓Has Cushing’s Affected your Job or Quality of Life?

I would love to take one of the surveys mentioned in this news article.  My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.

Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.

I could do as I chose – if I wanted to go somewhere, or do something, I just did.

Now, I work part-time and my studio is much smaller.  Everything I do is to accommodate my nap schedule.  I have to plan everything carefully so I can take my meds on time and be ready to sleep.

Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.

Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee.  (I went for it September 12!  Now I’ll have to explain to my endo.)

Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.

I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor.  Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing?  Or maybe the different brand is better for me.  Who can say?

What about you?  How has your life changed due to Cushing’s?

✍️ Day 20: 40 Days of Thankfulness

I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

Adapted from

✍️ Day 22: 40 Days of Thankfulness

 

Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

✍️ Day 14: 40 Days of Thankfulness

From 40 Days of Thankfulness

 

I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.

 

Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.

 

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!

 

 

When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

 

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

 

I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

 

📞 Webinar: Pituitary 101

Presented by

Kevin C.J. Yuen, MD
Director, Barrow Pituitary Center
Director, Barrow Neuroendocrinology Clinic
Barrow Neurological Institute
Phoenix, Arizona

After registering you will receive a confirmation email containing information about joining the Webinar.

Date: November 1, 2018
Time: 10:00 AM – 11:00 AM Pacific Daylight Time

Learning Objectives:

To discuss the anatomy of the pituitary gland
To discuss the physiology of pituitary hormone secretion
To discuss what can go wrong and how to treat pituitary disorders

Presenter Bio:

Kevin C.J. Yuen, MD, is a neuroendocrinologist and Medical Director of the Pituitary Program at Barrow Neurological Institute, specializing in the management of hypothalamic-pituitary disorders. He is double board-certified in Endocrinology and Internal Medicine by the American Board of Internal Medicine, and General Medical Council in the UK.

Dr. Yuen’s expertise includes clinical and research interest in the management of pituitary and adrenal disorders, particularly adults with growth hormone deficiency, acromegaly, hypogonadism, Cushing’s disease and adrenal insufficiency. He also has a particular interest in neuroendocrine disorders in young adult cancer survivors and adults with traumatic brain injury. His research is devoted to new diagnostics and treatments of pituitary disorders.

Dr. Yuen received his medical degree from University of Sheffield, UK. He completed his residency in Internal Medicine at University of Southampton, UK, clinical and research fellowship in Endocrinology at University of Cambridge, UK, and clinical and research instructor at Oregon Health and Science University, Portland, OR. Dr. Yuen is active in national and international collaborative studies, and has published extensively in numerous peer-reviewed medical journals, authored several book chapters, and is a frequent guest speaker on various topics related to pituitary disorders.

📅 Barrow Pituitary Center Patient Education Day

Barrow Neurological Institute
Sonntag Pavilion
St. Joseph’s Hospital and Medical Center
350 West Thomas Road, Phoenix, AZ 85013

October 27, 2018
8:30 AM to 4:00 PM

The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better-informed decisions about their healthcare and achieve their goals for a long and fruitful life.

pdfEvent Flyer or to register, visit the Barrow Website

For more information contact Maggie Bobrowitz, RN, MBA, at (602) 406-7585 or Margaret.Bobrowitz@DignityHealth.org.

📅 2nd Annual Weill Cornell Pituitary Symposium: Pituitary Disorders Across the Age Spectrum CME

Friday, October 19 at 8:00am to 4:00pm

Belfer Research Building, 3rd Floor

413 East 69th St., New York, NY 10021

This course is a comprehensive overview and discussion of the evaluation; management; and medical, surgical, and radiation treatments of the pituitary tumor. The conference will comprise lectures, case-based talks, and Q&A panel sessions.

The pituitary gland plays an enormously important role in human development, the maintenance of various essential physiologic functions, and aging and senescence. Hence, the health of the pituitary gland is critical at all stages of human life. For this reason, there are a variety of pituitary disorders that can have a profound impact on multiple organ systems at different ages. General practitioners and even specialists in endocrinology may not be fully aware of the widespread impact of the pituitary gland in health and disease; the function of this course is to educate and inform a general medical audience on pituitary disease.

For more information visit their website or contact Tatiana Soto at tas2041@med.cornell.edu or 212-746-0403.