Adrenal Achievements Series- Meet Artist Karen Gozzo Nolan

We were proud to interview freelance artist, Karen Gozzo Nolan for a feature in Adrenal Alternatives Foundation’s Adrenal Achievements Series!

Artist Bio:

     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. 

Karen says…

  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.

Karen is an example of how you can still accomplish your dreams despite your disease! For more information on her work please visit her facebook page- https://www.facebook.com/Karen-Gozzo-Nolan-Art-288525484648179/

Interview with Adrenal Alternatives Affiliate- Lisa Baker

Interview with Adrenal Alternatives Foundation Guest Affiliate- Lisa Baker

Lisa CWC CNHP RNHP

 

Q- Please introduce yourself.

A- Lisa C. Baker, CNC, RNHP, CWC

I seem to have had several lives!  I was an Associate Editor of an International trade magazine for many years, and then as a Federally-enrolled Native American, I moved to the jurisdictional area of my tribal government and worked in the Language, History and Culture Department, also becoming the Director of the Museum and Tribal Historic Preservation Officer.  During this time, I was very involved with tribal ceremonial grounds, and worked with women’s medicine.  In preparation for retiring, I decided to go back to school and study alternative and holistic health so that when I finally retired, I could help people (especially adrenal patients) as much as possible!  I became certified as a Holistic Nutritionist, and also became registered as a Natural Health Practitioner.  I was working on my Naturopathic Internship with a licensed naturopath in Oklahoma, but when we moved back to Kansas, the legal requirements were different.  So, in order to continue helping people, I have just completed certification as a Wellness Coach.  I also was an international recording artist for many years, composing and recording under the name of Lisa LaRue 🙂  I have also been  ordained  for nearly 20 years, and have done weddings, funerals and other ceremonies!

Q- How were you diagnosed with AI?

A-  My mother had Congenital Adrenal Hyperplasia (CAH), so it was a concern as to whether or not my father was a carrier, thereby affecting me.  This was way back in the early 1960’s, so there were no DNA tests, etc.  As an infant, I had many problems requiring extra salt which was all they would do for salt-wasting children at the time.  I was always sick.  I missed many, many days of school weeks at a time, and my doctor would not even allow me to participate in Physical Education.  As I entered puberty, I would have huge menstrual periods that would last for weeks, but I’d only have them every 9 or 10 months.  I started growing sideburns and a moustache.  I also had my very first ovarian cyst which burst at age 17.  At that point, I saw an endocrinologist who knew it was adrenal right away when I had a consult with him.  After giving my history, he did all of the testing and verified I had 21-hydroxylase Congenital Adrenal Hyperplasia.  As is true with a number of CAH patients with this form, cortisol is not always low, but is cyclical.  However, he put me on daily dexamethasone which I took before bed, and within a few years I had developed Cushing’s Syndrome from overmedication with steroids.  It took a LONG time to get that resolved, as well as all of the terrible side effects.  Today, I am much healthier, and take fludrocortisone daily because my aldosterone levels are consistently <0 – 1.6, but I take hydrocortisone as needed for illness, and times I have just figured out that something is off.  I have had to inject about 2-3 times a year the last 8 years.  My endocrinologist has explained to me that they do not have much research on how CAH behaves after menopause, because there are not that many patients who reach an older age, so they’re not really sure how it changes, but it does!
My mother lived to be 65, but she had also had a bilateral adrenalectomy, which her doctor believed in the 1970’s was a cure for CAH.  I do know of several people in CAH support groups who are in their 60’s.  I am soon one of them!

Q-What is one piece of advice you would give to any adrenal disease patient?

A-  Know thyself.  What I mean by that, is each person is different.  Some people with adrenal insufficiency can run a mile and be fine, others can only do it if they updose first.  Yet another might not ever be able to dream of doing it.  Be aware of your body and when it has needs, because fulfilling those needs are the only way you can run your body safely.  You don’t wait until your car runs out of oil to give it more, or you will have damaged lots of parts.  That’s the way salt is.  And if you ran out of gas, it’s over, you’re not going anywhere.  And that’s the way cortisol is.  Know when your engine needs a rest, or clean filters, and when it CAN run a race, don’t overrun it and let it rest after.   Also, do not follow trendy diets.  Those are designed for healthy people.  Each illness adds a different dimension to what your body needs or doesn’t need.  Nutrition needs to be very tailored when dealing with any illness.
Can I give two?  Because my second piece of advice is just as important.  Don’t rely on the doctor’s pills for everything.  YES, we NEED cortisol and fludrocortisone if we want to live, but don’t fight your body.  If you are diabetic, you really know you shouldn’t eat carbs and sugars even though you’re taking insulin, right?  It makes you need MORE insulin, and makes your body have to fight even harder to get the effects of the insulin.  Cortisol is the same way!  Be mindful of other ways to compliment the steroid, and help your body manage the best it can!

Q-How has adrenal disease changed you as a person?

A- I’m pretty used to it, as I’ve had restrictions my entire life because I was born with it.  But I guess the biggest way it has influenced me is that knowing I could not only die at any time from an adrenal crisis gone wrong, or early because the CAH odds say so, has made me want to avoid drama, find peace within myself and others, and help people as much as I can.

Q-What do you find is the biggest challenge with adrenal disease?

A- There’s a bunch!!  Trying to get people to understand ‘it’s NOT adrenal fatigue!’  Trying to get people to understand when I need help (solu-cortef injection, or mega-electrolytes for example).  Finding endocrinologists who understand adrenal disease as many are just Diabetic and Thyroid doctors.  And worrying what I would do if I had an adrenal crisis and nobody was around me that understands how “I” need treatment.  My biggest frustration is that when our cortisol gets out of balance, we don’t realize how our behavior is at the time.  Lack of oxygen to the brain due to low blood pressure, sugars going wrong, organs starting their shut-down procedure – and instead of helping us, people get mad at us and then cause our situation to get worse.  It’s like giving cake to a diabetic.  I certainly wish there were a way to get people to understand that if you start behaving unlike your normal self, you need some intervention.  Not just for the sake of behavior, but to save you from organ damage or even death!

Q-If you could change one thing about adrenal care, what would it be?

A- Doctors allowing patients to direct their own treatment, and to include alternative methods or rather, non-textbook methods, if they work and are not harmful.  Many doctors go ‘by the book,’ and as Adrenal Insufficiency is relatively new to treatments (with fludrocortisone and hydrocortisone both being the original and still the only medication, I would like to see them more willing to be open to other solutions.  That’s the only way treatment for AI will advance like other conditions have.

Q-What is something you wish every endocrinologist understood?

A- That patients’ own experience is helpful in treatment, and that the main reason for being a doctor is to help someone.  If the textbook chapter didn’t cover it, that doesn’t mean it’s bad.  And to allow patients the ability to use methods that are not covered by insurance if they feel like paying for it themselves.  Of course, this involves politics, so …..

Q-Tell us about your book?

is a book that is appropriate for both patients of Addison’s Disease and all forms of Congenital Adrenal Hyperplasia.  In it, I discuss each illness and their differences, the testing that is helpful for each, how they are diagnosed, and more information to make AI understandable not only for the patient, but for caregivers, friends and family.  It continues and focuses on foods, vitamins and minerals, activities, and daily regimens for those with AI so that they get the most benefit from their doctor-prescribed treatments and hopefully enjoy a better quality of life.  It also serves as a guide to what you should be expecting from your doctor, as well as what you should be expecting from yourself.

Q-Tell us about your work with adrenal patients?

A- I do not treat adrenal patients, but I work with them on “Wellness.”  Wellness is not just physical, but mind and spirit, as well.  They are all interconnected.  And while we may be ill, we can still have a bit of Wellness.  I work with patients on helping them evaluate their symptoms and learn trends that may be warnings, help them evaluate their eating and nutrition status and how they can make changes, physical activity, and spiritual.  I help them make decisions on ways to get along with their body, have a positive outlook, and keep from fighting their medication with unhealthy behaviors.  Adrenal patients have to watch so many things!  For example, Lavender!  People love their lavender oil, and it is indeed lovely, but it also lowers cortisol.  So, if you are making any at all, it will reduce it and then you’ll have to take more meds.  I’ve known of people even going into crisis because of lavender in their pillows.  I am here to help them with wellness as a coach with a background in not only nutrition and healing, but as a lifelong adrenal patient.  I understand what they need, how they feel, and help guide them through it covering all of the basis to achieve a life of Wellness.
Lisa sick not sick

Thank you Lisa Baker for sharing your story with Adrenal Alternatives Foundation!

For more information on her book, Living with All Forms of Adrenal Insufficiency: Not Fighting Your Body please visit the hightlighted link.

When Invisible Illness Becomes Visible

Awareness about invisible illness is something that this foundation is incredibly passionate about. Those who suffer with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand.

Conditions like Addison’s, Cushing’s and most adrenal diseases cannot be seen by the human eye but effect the lives of so many sufferers.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse; Looking well but being sick- therefore having people assume you are lazy and unmotivated  OR being sick and looking sick and having people stare at you in confusion; knowing something is wrong but not having the compassion to understand?

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my diagnosis of adrenal disease.

My body now bears the exacerbation and side effects of poor steroid absorption. Before I was on the cortisol pump  I was on steroid tablets, which I did not absorb and got very sick.

My once clear, ivory skin now bears the unfortunate appearance of acne, my figure is now in double digits instead of the quaint size “8”  I  formerly was and my body bears the bright purple/red stretch marks and scars resulting from my surgery and the mismanaged cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my  body is. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

Self worth should never be dependent on looks. It is truly inner beauty that counts.

How someone treats another person is the TRUE reflection of who they are.

Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

“True self control is controlling your thoughts, actions and feelings when nothing is the way you feel it should be.”

When I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a chronic illness sufferer can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.

Most of us with adrenal disease have struggled with our looks. Before my diagnosis, I was 87 lbs at 5’4….then four years later before the pump I ballooned to an obese size.

 

But you know what? My heart remains the same.

 

The only size that should matter is the size of your heart.

 

We have enough to battle, let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

If you are struggling with self acceptance, please reach out to us, we have counselors available to help you!

 

Wishing you Comfort &Cortisol,

Love, Winslow E. Dixon

The Adrenal Alternatives Foundation Founder