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.

6 Things to Remember when a loved one is battling Adrenal Insufficiency

6 Things to Remember when a loved one is battling Adrenal Insufficiency

 

Perhaps you have come across this article because you or someone you love has just been diagnosed with Adrenal Insufficiency. I am writing this article because I have been in the front lines of this fight alongside someone I loved. 

Those of us unfortunate enough to cross paths with this situation will tell you the naked truth; A.I is no laughing matter. In fact, it can be downright debilitating.

Don’t be defeated; all is not lost. When life bears down upon you in such a unfair way, you must push back with even greater determination. Sometimes, however, it can be difficult to even see the way forward. I have been a part of the AI fight for almost ten years and I will share with you the things that I wish I would have known sooner.

  • Take your diagnosis seriously!


    A.I is no laughing matter. You or the one who was diagnosed have a fight for quality of life on your hands. A.I can worsen if left undiagnosed, unchecked, or untreated and can even become life-threatening. The sooner you act upon it, the better you will be able to mitigate the effects of AI. My then-girlfriend began experiencing symptoms of AI almost 10 years ago. The tiredness, the diet changes, the sleep paralysis were all chocked up to stress, depression, etc. It took 5 years to get a proper diagnosis identifying what was actually wrong. By this time, AI had done so much damage that her adrenals were in total failure and beyond recovery. Do your best to take action ASAP.

  • Don’t despair; there is support out there.


    There are others out there that are dealing with the same circumstances you may be currently facing. These people can certainly help remind you that you are not alone in this fight. However, just like in any community, remember to associate with the right people. There will be those who have succumbed to despair and after all, misery loves company. Surround yourself with those who are positive. Learn from those who have found ways to make the best of their situation. In addition to this, there are advocacy organizations, such as Adrenal Alternatives Foundation  which can help inform you in the fight against AI.
  • You’re going to have good days and bad days.


    Go ahead and come to terms with this one. Depend on the severity of your diagnosis, you are not going to feel like a ray of sunshine every day. Don’t beat yourself up. Don’t tell yourself that you need to need to be doing everything your healthy peers do. If you are having a bad AI day, then do not push yourself! Remember, you do not have the advantage of health that your peers have. Don’t let others pressure you into doing more than you can handle that day. You may have to tell them “no”. You may have to insist. There are many people who won’t understand your situation. Do not allow them to get under your skin or make you feel bad.
  • If your loved one has AI, support them as best you can!


    Following up on the last point, people suffering with AI are not going to be at 100% very often. If your loved one has AI, please be understanding and patient with them. Many times they will feel depressed, defeated, or otherwise negative. I can tell you from experience that they need your special attention more than ever at these times. It can be difficult on you, the caretaker, sometimes. However, don’t think that your loved one is purposefully being a downer. If they could help the way they feel, they would change it. Don’t get discouraged, though! There is a response to this situation that works a lot of the time!
  • CORTISOL, CORTISOL, CORTISOL!


    This is the juicy part. Depending on your diagnosis, there is a good chance that you need to take cortisol in order to stay alive. If you or your loved one with AI is really dragging, or seems to not be acting like themselves (for example my then-girlfriend would get overly emotional) there is a very good chance that they need to increase their cortisol intake. I’m no doctor, but I can tell you from years of experience that when the migraines start coming on, the despair starts setting in, or the will to carry on just isn’t there, a updose in cortisol is the tried-and-true answer 90% of the time.  It isn’t some sort of panacea, but it almost always has helped. Sometimes you may have to remind your loved one to up their dosage. Often, the effects of AI can be so overwhelming that the one suffering can forget to updose themselves.
  • Look into all of the methods of AI treatment.


    Let me be frank. The endocrinologists don’t know a whole lot about how to handle  AI. In fact, finding a good ‘endo’ can be a huge challenge. In our situation, we have tried everything from pills to shots when it comes to delivering the cortisol/steroids that you may need. If you ask my personal opinion, the Cortisol Pump method has been the best solution by far for us. Obtaining a cortisol pump allowed quality of life to return to an otherwise bedridden woman. If we had known about this option from the start, we would have gone after it immediately instead of trying the other methods.

Dealing with this disease can be a costly matter. However, the most important thing is to not give up. It is possible to get insurance to cover some things. You can definitely get to supplies you need. Talk to people, because there are those out there looking to help you with your situation. Sometimes you might get bad news for your efforts, but keep on punching, because eventually you will break through, even if it takes a while.

Even though it has been a challenge to fight adrenal insufficiency, it doesn’t make you any less of a person. I would have chosen this woman over and over again despite her diagnosis. 

Don’t give up. 

Miracle Mermaid- The Story Behind the Adrenal Alternatives Foundation

Mermaids and adrenal disease……what do these two things have in common?

We all know mermaids are the mythological creatures found in fairy tales and storybooks we read as children. Many of us spent countless hours in pools and the ocean, pretending to be these fantastic, beautiful creatures…..only to grow up to find the harsh reality that mermaids don’t exist….but diseases like adrenal insufficiency do.

Winslow E. Dixon was that little girl who loved mermaids. She loved the water and idolized all things ocean. As a child, she blissfully played in the ocean waves, pretending she was a creature of the sea.

But that little girl grew up to realize that her fairytale of living in the sea wouldn’t come true. Life dealt her a stiff hand of medullary sponge kidney disease and endometriosis, which resulted in chronic pain from a young age.  This chronic pain was so severe it taxed her life and resulted in total adrenal failure- Addison’s disease. At 23 years old, this little girl grew up to find the nightmare of an adrenal crisis, never to be the same again.

Her health failed and her dreams crashed along with it.

But that little girl, all grown up now, was determined to get her life back.

She searched far and wide for options to treat her disease and discovered the promising hope of the cortisol pump.

She quickly discovered this treatment option was hard to come by.

Nevertheless, she persisted.

She visited multiple endocrinologists nationwide and was rejected by multiple doctors. No one seemed to want to take a chance on this treatment.

After two years of fighting, she decided to do it herself. She enlisted the help of a pharmacist and consulted Professor Hindmarsh and decided to take control of her health. She began the cortisol pump in March of 2018.

So where does the mermaid come in?

Winslow went from being completely bedridden and unable to function to being able to enjoy life again.  She was able to fulfill a life long dream of swimming like a mermaid, thanks to the strength she found from using the cortisol pump.

MermaidPromo (2)

Though the pump has not been a cure, it has helped her find better days and more quality of life.

After seeing how little resources there were on cortisol pumping, Winslow then decided to start the Adrenal Alternatives Foundation to help adrenal patients find every resource to manage this devastating disease.

When you’re adrenals fail, you are forced to find alternatives…..which are typically oral steroid pills. The treatment protocols for adrenal insufficiency have not changed since 1920. This is unacceptable. Research and treatment protocols are outdated.

For those with severe forms of this disease, oral steroid therapy is not enough to live a normal life.

This foundation was created to be the voice for those struggling with unmanaged adrenal disease.

Life may not be a fairytale, but it doesn’t have to be a nightmare.

Winslow’s story shows us that even though things may look bleak, there is always hope.

Adrenal Alternatives Foundation is here to educate the world on the TRUTH of adrenal disease and to empower patients to find the best quality of life possible.

Change is coming for adrenal disease ❤

 

 

 

The Way We See Ourselves and Why That Should Change.

Post by foundation contributor: Ilena Bickley

 

I am no expert or psychiatrist or anyone to really give any advice. I am one who suffers from a few chronic illnesses that leave me debilitated at times, so I feel like I have some good advice to give. Take it as you will.

I have been battling Addison’s Disease since 2013 and one thing it has taught me is that, I do not listen to my body…Not at all.

I have tried and I always feel like I got a handle on it, but in reality, I am nowhere near close to “listening.” Don’t get me wrong, at times I do. I do really good and I think that is where that little voice sneaks in and says “Hey!! Look at us doing so good, lets push ourselves and see what happens.” I don’t like that voice. That voice has led me to many ER visits. That voice has made me miss out on a lot of my kids activities.

Sometimes I feel like “Addison” got a little lonely, so she decided to call on a few other friends and throw a party in my body. Only it’s not a fun party. For the diseases, I am sure they are having a good ole’ time, but for me, the one who has to house them…Not so much. It’s like trying to manage a frat house on your own, but you are the one who has all the rules that are working against you. You can’t kick any of them out, they keep you up at all hours, they do things to you that make you so sick you want to throw up…NOT FUN!!

The past couple months I have really stepped back and looked at who I have become and all the ways I have had to adapt. I feel I have done so much to try and help manage my pain and fatigue. I have tried ways to lessen the bad days and try to gain more of the good, but you know what…I have failed so many times….. Or so I thought.

The one thing that I never got the hang of was listening to what my body was trying to tell me. I always saw it as the enemy that was trying to kill me off. I had to step back and look at things differently. Maybe my body isn’t trying to kill me off. Maybe my body is giving me signals, signs, warnings, that I should be listening too.

What would happen if I actually took the time to stop hating it and start listening to it? What if I were to love this body. Treat it with respect. Listen like I would to a friend. What would happen then?

So that is exactly what I did. I started to treat my body like a friend, someone who means the world to me. Do you know what I discovered?? A lot more than I thought I would that’s for sure. Now, I am not going to say I am better or it has “cured” me, but I have been in a much better place and that is where a lot of healing takes place. Acceptance is the key. We can’t change our situations. There is no cure or quick fix. We are stuck in these bodies, so why not show them some love. Why not listen to them.

I went back to watching what I eat closely. Not eating to many things together. That way I was able to track which foods were making me feel like crap. I looked into the AIP diet and what foods might be causing some flares. I loved the WFPB diet, so I am still playing with that. I don’t eat a lot of meat…Rarely… Maybe 2-3 times a month. I cut out nightshades (which was really hard to do). No more almond M&Ms or sweets that I don’t make myself (besides ice cream-I have found one that I do well with). I still try to avoid dairy as much as possible (still only having that about 2-3 times a months as well). Eggs and me get along just fine as long as they are fresh from a chickens butt (which is good since we now have 5 chickens). I can no longer have artichokes and that broke my heart. So, I am learning from and listening to my body and in turn, we have been doing pretty good.

Sleep and me still battle, but I do what I can to show him love. We meditate together. We read or listen to audible. I just try to relax, so he can relax and we can peacefully co-exist. Sometimes we fight, but for the most part, we are getting along much better.

Exercise is a bit tricky. Since putting on 40lbs, it was really hard to look at myself. I have tried so many things and I think I was just to much in my head about all the things I couldn’t do and didn’t want to listen to all the things I could do. So, I embraced what I could do and started to enjoy that. I embraced what I looked like and started to tell myself I am beautiful. I have been going to yoga with my youngest son the past week and I only do what I can and focus on the fact that I am actually doing some movement and bonding with my son.

Again, I am not cured by any means and I still have some bad days. For the past week though, I have had a pretty good week. This means that I only had slight tremors 2 days this week that didn’t manifest into something bigger. I had only 1 headache this week. I was able to make it through a whole week without needing a nap (resting-yes, nap-no.) I only had one flare from something I ate and was able to figure out what it was and eliminate it for the future. So this might not sound like a good week to most, but to me, it was good and I am looking forward to more like it.

I hope that you can find a way to look at your situation differently. I hope that you can start to love and listen to your body. We only have this one and it’s better to love than hate.

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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