Interview with Adrenal Alternatives Foundation Guest Affiliate- Lisa Baker
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.
Thank you Lisa Baker for sharing your story with Adrenal Alternatives Foundation!