Interview with Adrenal Alternatives Foundation Guest Affiliate- Lisa Baker
Q- Please introduce yourself.
A- Lisa C. Baker, CNC, RNHP, CWC
A- Lisa C. Baker, CNC, RNHP, CWC
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.
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.
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.
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.
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.
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.
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 ❤
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 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.
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.
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.
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.
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