from the Experts at the Norman Parathyroid Center.
Interesting stories of hyperparathyroidism we see every day.
My name is Chrystene Ells. I am a 49-year-old filmmaker, artist, animator and puppeteer. I have probably had hyperparathyroidism for about a decade. In 2004 I began to have 'spells' of total surreality, where the world felt as if it was falling away, and/or I was going to pass out. I had increasing bone pain in my spine and hips, searing kidney pain, and even though I have been a vegetarian and vegan for many years, my cholesterol was so high that, as one cardiologist put it, a 'normal person' would have to eat a 'bucket of lard' every day to have my cholesterol numbers. My skin dried out and formed strange callouses and cracks, my hair fell out, I was plagued with hives and insomnia, and my memory and cognitive abilities slipped away. My joints were jolted with screaming pains, and I grew spurs on my heels and elbows. I had pain in my wrist bones, total exhaustion, and a dulling of my overall emotional state. My tongue periodically swelled up, and I had a lot of strange issues with my eyes, which would suddenly stop tracking in unison, separate, and give me double vision for several minutes at a time. I was just completing graduate school when I felt my mind disappearing, and I barely crawled to the finish line of completing my thesis.
Eventually in 2011, over a 24 hour period I had a number of seizures or transient ischemic attacks (the doctors were never sure which), and this marked the beginning of a terrifically increased decline in my health and mobility. All through this decade of vague illness, dull wits and pain, I saw over 20 doctors. I saw five general practitioners, and was sent to four neurologists, two ENTs, two allergists, a nephrologist, a urologist, two orthopedic surgeons, three cardiologists, a podiatrist, and of course, when no one could diagnose me, a psychiatrist. I had innumerable pints of blood drawn and tested, MRIs and CT scans of my brain, ECGs, EEGs, ultrasounds of my uterus, kidneys, and neck, and predictably, a number of pharmaceuticals prescribed. Doctors guessed that I was suffering from some kind of weird migraine, or Multiple Sclerosis, or Lyme disease. I was given scripts for antidepressants, seizure medications, Lithium, hormone replacement therapy, and pain medications… but somehow I knew the doctors were on the wrong track, and I refused to take any of these medications.
It was a complete mystery. And I just kept getting sicker. My life was being drained away.
Then, in December of 2013, I got a new doctor. She did a full blood work up on me, and discovered that my calcium was high (11.5) and my PTH was also high (172). She told me that I might have 'mild hyperparathyroidism'. (editor's note: mild? This lady is dying of this disease!). I had never heard of the parathyroid gland before, so of course I went straight to Google and a couple of minutes later, in complete astonishment, I was reading parathyroid.com. Suddenly - and finally - I had ONE answer for all of my strange, seemingly disparate, health issues. I had a parathyroid tumor!
My first thought was: "That little PUNK!" One little PUNK TUMOR had been ruining my life for ten years! And my second thought was, "Why don't doctors know about this?" These two thoughts collided in my brain, and the concept for a 'medu-tainment' video starring a punk rock tumor puppet was born. The image of this punk tumor bragging about all the hell he causes in the body, set to a raging punk rock song, seemed like a great, cathartic way to confront some of the frustration, pain, and despair I had lived with for ten years, and at the same time, the creation of a copyright-free puppet tumor Public Service Announcement about Hyperparathyroidism that could go viral online seemed like a fun way to try to get the word out about the disease.
The lyrics for the first verse came to me immediately:
It was clear to me after reading parathyroid.com that I needed surgery, so I was happy when my doctor sent me to an endocrinologist, who sent me for scans. However, as often happens, the tumor didn't show up on my scan, so the endocrinologist decided to put me on a high dose of Vitamin D because my level (25.5) was just barely in the 'insufficient' range, or at the low end of normal (depending on the reference scale). He suggested that he had been able to 'cure' 'mild primary hyperparathyroidism' using 'Vitamin D therapy' before, and that taking high doses of Vitamin D could bring my PTH and calcium levels down to normal - without surgery. Again, thanks to parathyroid.com, I knew the endocrinologist was wrong. (editor's note: why do doctors think this? Parathyroid glands don't have vitamin D receptors-they can't see vitamin D). At my insistence, I was referred to the closest thing to a parathyroid specialist in my area: a General Surgeon who also did gallbladder surgeries, mastectomies, 'peri-anal Interventions,' and hernia surgeries, among others. Nevertheless, I contacted her office, only to learn that the wait time for parathyroid surgery was a year.
My frustration became desperation. I didn't know what to do, so I emailed the Norman Parathyroid Center in Tampa. I was astonished that Dr. Norman himself emailed me back. He told me that based on my blood work I had classic Primary Hyperparathyroidism, that I needed surgery, and that the wait time at the Norman Parathyroid Center was two to three weeks. By this time I knew that a botched parathyroid surgery could have serious consequences, and that all of the glands needed to be checked during surgery. I knew I wanted to be treated by a parathyroid specialist, not a general surgeon.
I have wonderful, amazing people in my life: artists, actors, therapists, musicians, filmmakers, and community activists of various kinds. When I told two of my dear friends what I was going through, they cooked up a crowd-source fundraising campaign to raise the money for me to have my surgery done as soon as possible at the Norman Parathyroid Center by the world's top parathyroid specialists. In less than 40 hours, the fundraising campaign had raised more than enough money for my surgery, flights, and hotel - thanks to 230 incredible, generous, amazing people. I sent my paperwork to the Norman Parathyroid Center and within a few days the phone rang. Dr. Norman himself was on the phone. He confirmed what I already knew from reading parathyroid.com: I had a tumor and needed to have it removed.
The surgery was scheduled for 3 weeks from that day, and I decided it was time to get to work on my Parathyroid Punk video. I finished the lyrics and posted a request to Facebook for a punk band to record it for free, as a public service. About ten minutes later, Gab Harpelle, the son of a female film director friend of mine, messaged me back. He is in a punk band called Zex, and a fan of the old-school punk sound I was looking for. I sent him the lyrics and within a couple of weeks Gab sent me the song he'd created with his friend Shawn Descarie, performing as Billy Darts. It had been professionally recorded and mixed down at a place called the Meatlocker by Ian Showalter. Parathyroid Punk was amazing!! The song gave me all kinds of ideas for images I wanted to include in the video, so I listened to the song over and over, worked on the designs for the main puppet, and drew storyboards that would help to illustrate the ideas I wanted to get across.
Meanwhile, a couple of young filmmaker friends of mine who have made a number of puppet films, Noelle Duddridge and Sarah Huber, joined me for a day of fabricating tumor puppets. We built the main singer, Parathyroid Punk, and his three little brothers. We drew a lot of inspiration from the rogue's gallery of punk parathyroid tumors, adenomas and enlarged glands on parathyroid.com. If you look closely, you will see that one of the 'three little brothers' is actually a small parathyroid gland that has grown a tumor – and the tumor has a face!
Eventually the puppet heads have taken shape. Here you can see two of the "little brothers". Additional props had to be produced, such as the "flying V" guitar, and Styrofoam bones.
Each of these Punk Parathyroid Glands was inspired by real parathyroid tumors (real parathyroid punks!) removed from patients. I found the ones that I wanted to copy on the page of parathyroid.com that has dozens of photos of parathyroid tumors.
Just before I left for Tampa, I did a rough cut of the video. I really wanted to share it with Dr. Norman and the amazing people I had had the pleasure of dealing with at the Norman Parathyroid Center in Tampa. I was so happy that Dr. Norman "got it" and loved the video!
On June 17th, 2014, after ten years of being sick, my surgery took 14 minutes as an outpatient procedure at the Norman Parathyroid Center in Tampa, Florida. My scar is just over an inch long, and the tumor was making 869 pg/ml of parathyroid hormone when it was removed. The next day, I was walking on the beach, collecting shells, and enjoying being able to think, and move without pain, for the first time in years.
Everyone who worked on Parathyroid Punk donated their time and services. It was a labor of love all around, and no one is making any money on the distribution of the video. Parathyroid Punk is a copyright-free PSA, available to any and all to use freely throughout the world, to help spread awareness about this disease. I have received so much great feedback about the video. Some people who are suffering with hyperparathyroidism are sending it to their families and friends to help them understand what they are going through. Medical students are sharing it with their professors and other students. And endocrinologists have shared it with their patients and posted it to their websites.
This video is dedicated to all my friends and to the total strangers who gave so generously to the fundraising campaign for my surgery, to the medical professionals and advocates who are fighting to get hyperparathyroidism recognized and understood, and to all of my parathyroid friends around the world, both diagnosed and undiagnosed. My heart goes out to the many, many undiagnosed people out there who are currently suffering from the progressive effects of this disease. I hope that in its own small way, Parathyroid Punk can help to change the world!
Watch the finished video here, and please share it on Facebook, Twitter, and any other site so we can help people understand that high blood calcium, even just a "little bit high" is dangerous and can make you miserable!
Watch a video at //www.youtube.com/embed/Po8aQN18RpE
'Parathyroid Punk' lyrics by Chrystene Ells
"All Ages" font by Kevin Christopher, kcfonts.com