Out of all the possible symbols that could represent adrenal disease, why was the blue butterfly chosen for adrenal insufficiency?
Butterflies have long been a symbol of rebirth, beauty and grace, but more so than these facts, butterflies share many similarities with adrenal insufficiency patients.
The butterfly is a powerful symbol of transformation. Butterflies represent the ability to move from one state, perspective or lifestyle to a new one.
Like most adrenal patients, the butterflies go through a troubling time of transition. To achieve metamorphosis, the caterpillar spins itself into a cocoon. The caterpillar and adrenal patient alike undergo a process that changes their lives permanently, only to emerge to a new normal. The butterflies time in the cocoon can be likened to many adrenal patients experiences before diagnosis: the medical tests, the hospital trips, and the realization that your body was changing right in front of you and it was out of your control.
Interestingly enough, butterflies and adrenal patients both rely on high amounts of sodium for their survival. Sodium chloride provides essential nutrients and for this reason, a butterflies diet consists of items which naturally contain sodium such as grass, mustard, oak and milkweed. Butterflies have also been known to drink tears of other animals because of the sodium content. Talk about getting strength from your enemies!
In Native American culture, butterflies are said to represent wisdom and intuition, which are valuable assets in the daily management of adrenal disease. Adrenal disease warriors must constantly be aware of their cortisol levels and have the wisdom to know when to updose.
Butterflies are a powerful symbol of rebirth and the start of a new beginning. A diagnosis of an adrenal disease is the beginning of a new stage in life. Just like the butterfly, adrenal patients must learn how to exist with the new changes.
Adrenal patients, we are no longer caterpillars, we found our wings and are learning to fly.
The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization.
We were proud to interview freelance artist, Karen Gozzo Nolan for a feature in Adrenal Alternatives Foundation’s Adrenal Achievements Series!
Karen Gozzo Nolan was born in Connecticut. She resided in Connecticut until she was 28 and then relocated to Vermont. Always a lover of art, life didn’t allow her the pleasures of following her dream of being an abstract painter in her younger life.
Karen painted abstracts throughout her life, though being a single mother, it was difficult to dedicate herself to art. Karen had also spent many years battling a rare pituitary tumor. After a near death experience, Karen vowed to live life to its fullest, and to follow her passion of art.
It wasn’t until relocating to Rotonda West, Florida in 2013, that she was well enough to pursue this dream. Shortly after making the move, she began her professional career as an abstract artist.
Karen is a primarily self taught abstract expressionist. Her paintings are influenced by music, the emotion that comes from it, and her love for vibrant color.
The paint and brush become the instrument and art is the song it plays. Music is the inspiration for my art. It begins by selecting musical artist for the piece, and laying out my medium as rainbow before me. The emotion of the music will choose the palette, along with an assortment of tools. The process is very private, exhilarating, yet exhausting in a good way. Disappearing into the art my tools become the instruments, the paint becomes the music. Once a piece has begun, it moves forward with the same musical artist until complete. I have been labeled an abstract expressionist by my peers. My paintings are emotionally vibrant, and painted with the passion of the song. As far as my memory goes, connecting music with color was something I thought everyone did. At different periods in my life, I would paint this connection. Imagine, color connecting with sound. Synesthesia, is a gift in which two neurological senses connect, for me its color and sound. Creating art professionally has been my dream since childhood, and the path to this dream has been rewardingly bumpy. As a self taught artist, I am devoted professionally to pursuing my dream and to continue to create art to please the eye for years to come.
Q-Please introduce yourself?
A- Hello, gosh it is so hard to describe who I am, first thing I think of would be a woman who was met with many challenges, during her years, yet overcome them with strength, bravery, love for life, and full of dreams. You can read my bio at the end of this article.
Q-What form of adrenal disease were you diagnosed with
A-I was diagnosed with Secondary Adrenal insufficiency after two pituitary surgeries damaged my pituitary. I have 1/3rd of the pituitary remaining and it is non functioning except for the posterior section. The surgeries were performed because I was diagnosed with Cyclic Cushing’s Disease. I did get a “cure” from Cushing’s with the second surgery, but have to replace all hormones.
Q-Can you tell us about your service dog you had to help you manage your adrenal disease
A-One year ago I lost my service dog Gus at the age of 17. We volunteered in the hospital for 13 years together as a team, visiting pediatrics and the chemotherapy lab. While I was volunteering with him, if I suddenly grew ill, he went through each step with me and alerted that I needed help. I had several negative side effects from my surgeries, two of them being seizures and sodium crashes. I had several addison’s crisis as I was weaning off of a very high dose of steroids. Gus would alert and me that I was low in cortisol. He would stick close to me, follow me and would lick my fingers rapidly. I hadn’t figured it out for a bit, but he was telling me crisis was coming. He became my service dog then.
Once back to work in the hospital, my boy did some amazing things. He was always amazing but one time he alerted on a small boy for seizure. I had no idea he was doing it. He was always well behaved in hospital, but this day he was barking his head off, looking at me, and the boy’s Mom. Not fully understanding what he was doing at that point. One month went by and I was in the lobby of the Hospital, I could see a woman was flagging me down from the other side of the lobby. Upon approaching me she asked if I remembered her (which I didn’t) but then she said, “Your dog was barking in my boys’ room. I just wanted to tell you that he was alerting for the impending grand mal seizure. My Son went into seizure within 2 minutes of the time you left.” The hair stood up on my arms because I was shocked. Gus must have learned the scent of impending health danger from alerting on me!
Three months after Gus passed, I decided to rescue a Yorkie puppy and hopefully train him to be my service dog. He is smart, so sweet, and loving. He is already very in tune to my emotions and scent. Finn knows when I am not feeling well, he does not leave my side. Finn has just turned one year old recently and now is ready for more training. This when the serious work begins, it will be more difficult now because I manage my disease well. But don’t get me wrong, I have my days. Finny will be a great service dog someday.
Q-Can you tell us about your art?
A- While painting, I disappear into a place where there is nothing but music, my hands and color. No thoughts of everyday life. I am just there, in the moment. It is very freeing and like a meditation. It is therapy. The paintings are rarely planned and I more often paint in the expressionistic style. Large paintings are my passion, more room for expression.
Q- How do you use your art to help you cope with adrenal disease?
A-Art has allowed me to fulfill a lifelong passion. At a young age I had decided that I was going to study art in college, that didn’t happen. But the passion stayed. Always making different things, and here and there I would paint and give them to friends. Then I became a single mother, so art supplies were scarce. Still the passion was within. Later in life, after going through the two brain surgeries I knew I was going to pursue art as a career. With my last surgery in 2007, I experienced a CSF leak (cerebral Spinal Fluid leak) so it took me a while to recover. After having the two back to back surgeries, it took a lot of work and determination to recover. Cushing’s disease robs me of everything! It took my strength, my looks, my health, every aspect of my life. It was a long road to recovery. I painted a bit in recovery, and the paintings were always abstract and always to music, still not realizing that I was actually painting the emotion of the music.
As we know with adrenal disease stress is a “no no.” Painting is a stress reliever and an anxiety crusher. When you think of painting, I bet you think of a person sitting at an easel. Painting a large abstract can be very exhausting, a lot of motion, using all types of tools and painter’s knives. I rarely use a brush and never sit. It is quite a workout, but it manages the stresses of life and as the result you have made something beautiful!
Q- What is something you wish you could tell all adrenal disease patients?
A- We are all so different, all having different causes for Adrenal insufficiency. I believe the best thing that you could do for yourself, would be to read. If you have a question ask it, or ask Mr. Google and read respected sources, educate yourself, learn everything about your own body, pay attention to what your doctor is saying and know when to move on and find an expert. You deserve to be cared for with the best of care. Do not settle for a doctor who is not qualified to help you and know when you are being fed medical baloney. Not to sound harsh, but that advice has really helped me. Also, if you’re Secondary AI and do not produce hormones (panhypopituitary), I am hesitant to trust one medical professional to handle the balancing of all of your hormones. I go to a naturopath for thyroid, and reproductive gynecologist for female hormones and DHEA and Testosterone and also pituitary expert to handle steroid and growth hormone. It took me 14 years to figure this out. If one of your hormones is off, they can all be off, so balance is so important.
Q-How has adrenal disease changed your life?
A- It has made me look at life differently. After knocking on the door of the gates of Heaven, you think differently. There is no time for petty things, drama is something to avoid. People who have not experienced a life threatening disease would never understand. We always have to think of the way we feel, small things can trigger a trip to the hospital, it makes you more aware, and appreciative of life. it has pushed me to follow my dreams.
Q-What goals do you hope to accomplish with your art?
A- Artists do not paint for money, they paint because they need to, to soothe their soul. Money is nice though. When my art is exhibited in gallery’s around the world and I am able to leave my name in the art world, my dreams will be fulfilled.
Karen Gozzo Nolan pictured with AAF founder, Winslow Dixon at Karen’s art show in 2018.
Treatment protocols for Adrenal disease have not been updated since 1920. It’s time we get accurate research and data on the truth of life with adrenal insufficiency. We are making sure quality of life is an option for all sufferers of adrenal disease. Please help us share this survey to get as much accurate data as possible for an upcoming research project we will be announcing very soon. Change for adrenal disease is coming.
If you have adrenal insufficiency, please take a moment to fill out our survey. The information gleaned from this survey is completely confidential and will be used to further advancements in adrenal disease care.
This is what undiagnosed adrenal insufficiency looks like.
I was 96lbs at 5’4. My hair was falling out. I was fatigued. I struggled to breathe. My anxiety and mental health was slipping. I was 22 years old, dying and I knew it…….but I had no idea why…….
Notice the sea salt in the background?
I was craving it and eating it like candy.
I went to countless doctors, specialists and medical professionals, who never could find any answers.
Then, tragedy struck, I had an adrenal crisis on my 23rd birthday. Below is the lab result from my blood cortisol level test. After this result, I was transferred to Cleveland Clinic Florida, where they administered an ACTH Stim test, which I epically failed. I was then diagnosed with primary Addison’s disease and started on hydrocortisone and fludrocortisone.
After my adrenal crisis, my life was never the same. I struggled to stabilize on the oral steroid tablets due to malabsorption issues stemming from my congenital disorder, Medullary Sponge Kidney. My weight went up and my quality of life went down.
Research shows that adrenal disease patients diagnosed after an adrenal crisis are statistically less stable than those who are diagnosed never having an adrenal crisis.
This was definitely the case for me. I watched my life crumble. After my adrenal crisis, I suffered central nervous system damage and not only was unable to work, but also struggled to put pants on, hold a spoon and ever shower myself.
I was only 23 years old, facing a bedridden reality where I had to face my own mortality. I went to doctor after doctor, just hoping for a miracle, to no avail.
I was determined to get my life back, so I began obsessively searching for ways to improve my health. I was fortunate to come across Professor Hindmarsh’s book, Congenital Adrenal Hyperplasia where he mentioned the cortisol pumping method.
I knew this method was my best chance at stabilizing with my adrenal insufficiency. Over the next two years, I pursued this treatment. I visited countless endocrinologists in hopes that they would write my prescriptions for the pump, the medication (solu-cortef) and the supplies to begin cortisol pumping, again, to no avail. I was met with the answer of NO on every occasion, citing the reason “adrenal disease is just not managed that way” or “It’s not FDA approved.”
After two years, I finally found a local nurse practitioner who was willing to write the necessary prescriptions. Victory, finally….
……..or so I thought.
I quickly discovered how difficult it was to obtain insurance coverage for an infusion pump if you are not diabetic. Even though I had FINALLY found a doctor willing ti write the prescriptions, my insurance not only denied the pump and the supplies, but also denied the solu-cortef medication as well.
I appealed the decision from the insurance company and continued to fight to start the cortisol pumping method. Florida Blue never approved my request.
It amazed me to see how difficult it was to start the cortisol pumping method. There were so many obstacles to overcome. It was then I realized that there was a massive deficit in the world and I was going to do all it took to fill that deficit, not only for myself but for every adrenal disease patient suffering as I was.
That was the day Adrenal Alternatives Foundation was born.
No longer will we have to scope out ebay, craigslist and internet sources for infusion pumps or supplies. No longer can doctors tell us this method isn’t possible. No longer will anyone have to feel insane for attempting a new method to manage their cortisol replacement.
Adrenal Alternatives Foundation is proud to have a clinical team eager to direct adrenal patients, families and physicians to all possible options to manage adrenal insufficiency.
We are also pleased to be aligned with the organization CR3 to provide pumps and supplies to adrenal patients need them; with or without insurance coverage.
The cortisol pumping method saved my life. Though it is not a cure for adrenal insufficiency, it is allowing me to live my life in a way that was not possible on cortisol tablets.
Click HERE for more information on cortisol pumping.
The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and are guiding adrenal disease sufferers to every possible resource to manage their health.
We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.
The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline or bacteriostatic water) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump. This method bypasses the gastric passage and is able to deliver cortisol in a more natural way. With an infusion pump, an adrenal insufficient patient can receive a constant supply of cortisol and can lesson the instability experienced with oral steroid cortisol replacement. Side effects due to malabsorption can be decreased and patients have reported to have improved sleep, weight management and experience an overall improvement in their energy levels and sense of well-being. This method has also been shown to lessen the prevalence of adrenal crises and hospitalizations due to low cortisol.
Though this method is not a cure for adrenal disease, it is an option and a ray of hope for those who are struggling with quality of life.
According to a survey done by the Adrenal Alternatives Foundation concluded that 94.2% of the 52 anonymous cortisol pumping patients reported that the cortisol pump had improved their quality of life.
Is Cortisol Pumping FDA approved?
Adrenal Alternatives Foundation is actively working to gain FDA approval for the cortisol pumping method, but that involves years of clinical trials, patient studies and funding. We will achieve this one day, but until then, we are educating patients that FDA approval is not necessary to safely and legally begin cortisol pumping under the care of a licensed physician. Use of the infusion pump for adrenal insufficiency is considered “off label.”
Infusion pumps have long been approved for the administration of medications. According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”
In addition, according to the recently passed Right to Try Act, patients have legal rights to access to life-saving treatments which are not yet FDA approved. The act states the following:
(a) IN GENERAL.—Chapter V of the Federal Food, Drug, and Cosmetic Act is amended by inserting after section 561A (21 U.S.C. 360bbb–0) the following: ‘‘SEC. 561B. INVESTIGATION ‘‘SEC. 561B. INVESTIGATIONAL DRUGS FOR USE BY ELIGIBLE PATIENTS. ‘‘(a) DEFINITIONS.—For purposes of this section— ‘‘(1) the term ‘eligible patient’ means a patient— ‘‘(A) who has been diagnosed with a life-threatening disease or condition (as defined in section 312.81 of title 21, Code of Federal Regulations (or any successor regulations)); ‘‘(B) who has exhausted approved treatment options and is unable to participate in a clinical trial involving the eligible investigational drug, as certified by a physician, who— ‘‘(i) is in good standing with the physician’s licensing organization or board; and ‘‘(ii) will not be compensated directly by the manufacturer for so certifying; and ‘‘(C) who has provided to the treating physician written informed consent regarding the eligible investigational drug, or, as applicable, on whose behalf a legally authorized representative of the patient has provided such consent.”
According to the above legislation, adrenal patients meet the criteria for legal use of an infusion pump to administer glucocorticoid medication.
How do I get a pump?
The first step to cortisol pumping is establishing a care plan with a licensed medical professional. This can be a difficult challenge when trying to find a physician to manage your care with the pumping method, as most have never heard of it. This is why Adrenal Alternative Foundation has volunteers on our clinical advisory team willing to communicate with your healthcare team to help you establish a plan regarding your care on the cortisol pumping method.
It may take you many tries to find a physician willing to manage your care with the cortisol pumping method. Send your research, your health information, everything you can to the endocrinologist before your appointment so they are aware of your intentions beforehand. It may benefit you to write a letter to the endocrinologist prior to your appointment that explains your diagnosis, failed treatments and desire to be on the pump. They may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort.
Will insurance cover pumps and supplies?
What your insurance will cover is completely dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal. Visit this link to download the example appeal letter you can fill out with your information to appeal your insurance company’s denial.
Adrenal Alternatives Foundation has also aligned with the organization CR3 to help adrenal patients acquire pumps in a safe and legal manner. Visit this link to apply for pump assistance.
It is also an option to cash purchase pumps and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.
Is cortisol pumping safe?
Adrenal insufficiency requires adequate cortisol replacement in the form of steroid medications. With the cortisol pumping method, patients can bypass the gastric pathway and absorb their life-sustaining medication better. This treatment is revolutionary for hypermetabolizers and for those with gastro-intestinal problems or malabsorption issues.
The pump truly puts adrenal patients in control of their cortisol distribution in a way that steroid pills cannot. In situations of physical or emotional stress where “updosing” is needed, the pump can immediately administer a bolus, which is extra cortisol administered through the pump canula at the amount you select. Instead of having to wait for pills to metabolize, the cortisol can be absorbed faster and can help prevent adrenal crisis.
Cortisol pumping is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on steroid replacement pills, being on the pump method may not be necessary to achieve quality of life.
Do I still need an emergency injection on the pumping method?
An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. The pump is not a replacement for acute adrenal crisis care. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis.
THE ADRENAL ALTERNATIVES FOUNDATION IS REGISTERED WITH THE IRS AS A 501(C)3 NONPROFIT ORGANIZATION. WE ARE A PATIENT EMPOWERMENT ORGANIZATION THAT ENCOURAGES, EDUCATES AND ADVOCATES FOR SUFFERERS OF ALL ADRENAL DISEASES AND ARE GUIDING ADRENAL DISEASE SUFFERERS TO EVERY POSSIBLE RESOURCE TO MANAGE THEIR HEALTH.
We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.