Stress Management - Painting Happy Trees

"You have to have dark in order to show light...it's just like in life" - Bob Ross

Bob Ross is one of my favorite artists. I've always wanted to learn how to paint landscapes like him. I took various art classes in college, but it's been a couple decades since I've picked up a paintbrush. My imagination has been mostly focused on arts and crafts with my kids. Last year, I felt motivated to start a new hobby and have fun with my youngest daughter. I purchased some paint brushes, canvas, and a Bob Ross paint set. Oh, and there were Bob Ross wigs to wear, too! My daughter loved it and now painting is one of our favorite pastimes. I've never used oils before, but it has become my preferred medium. The only drag is we make a huge mess, and the clean-up takes a long time! I don't have a room dedicated to painting, so we paint on the kitchen table with lots of drop cloths around us.

Here's my first oil painting: 

Reflections of Calm - June 2018

Claude Monet, another favorite artist of mine, is now featured in a local art museum. Monet's paintings of his lily ponds and the outdoor scenery of his home in Giverny are so lovely. It was a thrill to view his masterpieces in person and read about his life in the exhibit. I am inspired and hope to spend more time painting. It's a good way to relieve stress and if I make a mistake, I just turn it into a happy little tree. As you can see from my painting above, it actually worked!

14 Years of Living with Pituitary Disease

 Click on the graph to enlarge

This month marks seven years since my Proton Beam Radiotherapy and 14 years of living with pituitary disease. Dealing with hypopituitarism (caused by radiation treatment) continues to be a challenge, but hormone replacement has successfully returned my energy and overall sense of well-being. I'm taking medication for secondary hypothyroidism and still have mild adrenal insufficiency. I do not take steroids unless I'm sick (flu) or need surgery. My ACTH levels are stable, and my AM Cortisol levels are, too. Whether I am in menopause due to my dysfunctional pituitary gland is a toss-up. My symptoms match the diagnosis, but my FSH is too low for the GYN to call it (I suspect it will never be high - time will tell). Also, I've been having problems with my right ovary due to recurrent and persistent hemorrhagic/sometimes complex cysts for which I have been referred to surgery. As a last-ditch effort, I began HRT this summer to see if it resolves the problem without surgical intervention.

My IGF-1 levels have remained low. My prolactin levels vary, but have stayed in the normal range. In 2017 my MRI report said tumor was not seen, so unless my labs differ from what is the norm for me, or my endo suggests it, I've opted to wait on any further MRI screenings for tumor.

Needed: Adrenal Insufficiency Awareness

As I mentioned earlier, I was diagnosed in 2016 with secondary adrenal insufficiency (AI) due to radiation treatment for my pituitary tumor. This was confirmed after having two ACTH stim tests. I'm writing this post to work through my thoughts regarding a recent trip to the hospital for the onset of adrenal crisis.

Thankfully it has been a couple of years since I've visited the ER needing a steroid bolus. I only take my medication as directed for specific incidents of stress or illness (which is rare). I was diagnosed with Type-A flu at the end of January and began steroid treatment. The sickness quickly progressed to a secondary upper respiratory infection, but I weaned off the steroid as directed once I was on the antibiotic, and symptoms improved. Unfortunately, sinus congestion did not clear up, and the infection returned. Because I began to feel progressively worse, I started retaking hydrocortisone and was given another round of antibiotics in urgent care. Following the visit, I met with a GP and was advised to stop the steroids; I wasn't taking a high dosage, so we agreed it was probably safe. Two days later, in the middle of the night, I was taken to the ER due to excessive nausea, vomiting, dizziness, and extreme weakness. I could barely walk. Per my instructions regarding adrenal insufficiency, if vomiting occurs, I'm supposed to take hydrocortisone. If I cannot keep the medication down, I must go to the hospital for stress dose steroid treatment.

My husband called 9-1-1 due to the severity of my symptoms.  When the paramedics arrived, they were informed by my husband that I was a patient with adrenal insufficiency and needed stress dose steroids. They found me lying on the bathroom floor, hunched over, a bit confused and trying to respond to questions as I continued to vomit in front of them. They did not know how to treat adrenal insufficiency and did not administer steroids. An I.V. was started in the back of the ambulance and they gave me anti-nausea on the way to the hospital. I requested they take me to a nearby hospital that I've been to before so steroids could be given immediately. Unfortunately, my established medical history did not make a difference. Upon arrival to the ER my husband informed the nurse of my condition and that I needed a stress dose steroid, but she did not respond to his request and said the doctor would evaluate everything and make a decision. Instead of giving steroid treatment first, they wanted to rule out other causes for my symptoms. Blood was drawn (minus ACTH and Cortisol level) and an EKG was ordered. No one looked at my medical ID bracelet, and the doctor did not give permission to treat immediately. Almost two hours passed before a bolus of Solu-Cortef was administered. Once the medication was given, my condition stabilized. Not long after I was released and walked out of the hospital on my own.

As the brain fog lifted and I began to process what happened, I realized the EMS was not properly equipped to handle an adrenal crisis. A medical ID bracelet and medical history was not enough to convince hospital staff that treatment for adrenal insufficiency needed to be given first before ruling out other causes. After my last hospitalization (2016), I took a hospital survey and stated that there needs to be more awareness about adrenal insufficiency. To my disappointment, this did not change anything regarding the way I was treated - even with an established record.

I will be meeting with my endocrinologist for follow-up to discuss how best to handle this situation should it happen again. Read more on this: Understanding Adrenal Insufficiency and Secondary Adrenal Insufficiency - What You Need to Know

Video: Endonasal Endoscopic Surgery

I launched this blog in 2006 and have been living with pituitary disease for 14 years now. Today I feel physically better than I did at diagnosis (May 2005) thanks to the amazing doctors helping me in this journey. It started with Dr. Daniel Kelly and his team in Southern California. If you're newly diagnosed and have questions about your diagnosis, there is hope and you can live with this kind of tumor. As I discovered early on, it's good to get informed and understand your condition - questions you may have are real concerns and worth researching. The Pacific Neuroscience Institute in Santa Monica, CA has a trove of information and support regarding all things pituitary.

Check it out:

For more information visit: Pacific Neuroscience Institute or see more general links on the right of my blog.

When Breath Becomes Air

I just finished reading When Breath Becomes Air by Paul Kalanithi. The author is a neurosurgeon diagnosed with and eventually succumbs to stage 4 lung cancer. In his book, he gives a detailed account of his time in residency and raw depictions of the medical procedures required to obtain his medical degree. Oddly enough, some of what he wrote about regarding the brain I've become familiar with. The many years of living with a pituitary tumor have given me a basic education on the structure and function of the brain, so I could envision what he was describing. However, his narrative is so thorough that you don't have to be a brain tumor patient to understand. By relaying his own experience with sickness and death, Kalanithi's book sharpened my focus by reaffirming my resolve to live contentedly with pituitary disease and see there can be hope in suffering.

As I neared the end of the book, especially when reading the epilogue Dr. Kalanithi's wife wrote, tears rolled down my face at her description of his final days. My aunt died from stage 4 cancer last summer, so much of what Dr. Lucy Kalanithi wrote was strikingly similar to my aunt's experience - the chemo treatments, trips in and out of the hospital, and the quick breakdown of the body as death approached. Nevertheless, I found a measure of solace in the book and the authentic way Dr. Lucy Kalanithi writes about her husband's death (and the days that followed it...). Her words may be helpful for anyone dealing with chronic illness or cancer.

If you have not heard about this book, I'm posting the trailer as an introduction and a recommendation to read. Link to purchase: When Breath Becomes Air

In this next video, Dr. Lucy Kalanithi speaks about her late husband's book: 

"Engaging in the full range of experience - living and dying, love and loss - is what we get to do. Being human doesn't happen despite suffering - it happens within it." Listen to Dr. Kalanithi's moving speech featured on TED Talks: What makes life worth living in the face of death | Lucy Kalanithi