Exciting Announcement

As promised, we have an exciting announcement!

Adrenal Alternatives Foundation was created to help all adrenal disease patients find better quality of life. We are actively working to make sure treatment options are available to all adrenal insufficiency sufferers.

Access to the cortisol pump treatment is limited and this foundation is dedicated to helping people establish care and maintain pumps/supplies to achieve this life changing treatment.

In addition to our long term solutions for this issue, we are pleased to announce we have found a solution to eliminate the “black market” necessity for gaining access to pumps. The days of scouring eBay, craigslist and facebook for pumps and supplies are now over!

We are pleased to announce our affiliation with CR3, which is an organization dedicated to placing pumps and supplies in the lives of people who need them.

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Founders Winslow E. Dixon and Charles Ray III (pictured above) have created a program which combines the resources of both organizations in order to supply pumps to adrenal disease patients in a safe and legal manner.

To apply click the highlighted text.

You can also discover more information on cortisol pumping on our website.

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This is just one step into bettering the lives of future adrenal disease patients.

Change is coming for Adrenal Disease!

Stay tuned for updates!

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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. EIN: 83-3629121

Maja’s Adrenal Disease Story

Maja Bergma shares her amazing story of diagnosis and her quest to spread awareness on adrenal disease!

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First when diagnosed, I was happy! I thought, Now they can finally fix me! I can get my energy back and catch up on everything in my life that just got put on hold over the years I felt so sick. But I soon realized that fixing me, was not so simple. I was hoping to be able to work/study/travel – do all those things again.

Let’s just say that I got kind of a reality check, realizing that just because you get a diagnosis does not mean that you can get fixed up and well so easily. I feel like the medication keeps me alive, but it’s not enough to let me really live!

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Before my diagnosis, I used to be kind of a high achiever.   I was the one always helping others and now I´m the one needing help.  This disease has turned my world kind of upside down. I had to re-evaluate my self-worth/self-image. I am still learning to be kind to myself, and still working on knowing how to save cortisol/energy.

In the beginning the stress of feeling bad for being sick, feeling like a bad wife/mother for not being able to do all the things I want to do was not helping me feel better!  It was a tax on my soul and like an energy thief.

I see that this is a struggle for many in the support-groups too! You are not alone! I’m now trying to be my own best friend. I don’t need to be so hard to a friend having a rough day. I would not be so hard on another person in the same situation, so I need to be kind to myself too! This is my new way of thinking.
I frequently tend to get fevers, when I exert myself – and that´s rough when one need to up-dose for that. My doctor, said I need to come to peace with that that´s, the way my body works. So I´m working on acceptance, but still fighting for more help, better treatment options.

I had to stop driving my car, and that´s sad but there was no other alternative. This summer we bought a new, smaller home because of my situation. Our new home is  without stairs and no large garden. We are currently getting it altered to work even more practically for me. For example, with low blood pressure, I can´t safely carry laundry up the stairs from the basement, and showering takes a lot out of me so I need to sit and do that to not fall when my bp falls and I feel faint. I don´t want to hurt myself any more than necessary. Our new home works better with my low energy level and my bp trouble.
I realize I can’t live on false hope any more – that I will feel like I used to soon. I have to choose to live my life that functions well for me right now. I feel like I can win a little every day!  I do hope to get to try a pump in my lifetime, and if I can’t,  I do hope that other AI generations after me, will get the chance – if they don´t work well on steroid pills.
I need to rest and sleep a lot. I see many not doing well on HC, needs to sleep a lot too. I try to do things, rest a bit, and do some more. I try to pace myself to get things done. I highly recommend pacing for those of you who struggle, just like me.Also a slow-cooker, made my cooking less dangerous – with lower risk of burning food or the house down! Haha!
My warmest recommendations for other tired AI sufferers needing to get a feeling of being able to win, SMILE! Currently working on trying to help my whole body heal – since being sick for so long without diagnosis. I have been so broken down and know what its like to feel totally broken. I now realize the war that was goes down on the inside of me and why I was get tired on a kind of a cellular level.
I have needed to learn to be more kind to myself. I realize that this disease, I can’t fight with force (that only leaves me exhausted) – it´s more about outsmarting it… So now I´m working on that. Trying to get me the best help!22008247_1520918134596484_4646301107067754700_n.jpgI believe that other diseases in combination with AI, makes it harder to manage it. We see this proved when we look at how the cortisol curve looks in those who have normal adrenal function when they do get sick. I believe this is very important information for better treatment in those with many diseases at once.
In addition to AI, I have upset stomach problems, but they have become better after I get celiac diagnosis and got that treated. But I still get sick to my gut in the gaps between medications. My bp often seems to run low so I recently started to use a walker. I use my husband for support for the longest time, at first – but I want to be able to walk around with out him also so I don’t fall when my bp suddenly decides to drop.
I really hope to see more research about cortisol. Prof Hindmarsh has done some amazing things in his research, I just hope we, all over the world – soon can reap the benefits of his knowledge on sick-rates, dosing and general pumping! Since I have seen that the quality of life so much improves for those going on the pump, who do not feel well on steroid pills alone. I wish that there would be more awareness, to make changes for the better for all AI sufferers. Prof Hindmarsh – to me is like a superhero, he is doing this research for the kids. I can’t even imagine being a kid, with low cortisol and what that would do to a family. In Sweden there is a book coming out soon, about kids with AI and their families – the book will be called “ständigt på vakt” translates to “Constantly on guard”. Happy that the book will come out and rise AI awareness!
Well I must say, even if my life is far from optimal – I´m so grateful, to be alive!  I know that today might not be optimal, but as long as I´m alive, I at least might have a chance of a better life. I hope get a pump and get more on top of this! As long as there is life – there is hope! Heard a woman on her 3 day of pumping saying she felt healthy, and she never did that on pills – I wish that one day I can say that… I feel healthy!
It’s with a sad heart, I have seen too many in the support-group die these last months. And a woman here in Sweden died before getting diagnosed and treated. She was tested but did not get help fast enough. This is depressing and shows how much we need to raise awareness around AI even today in these modern times! We must work on awareness, in memory of those in the AI community, who left us too soon: for our-self and hope for a long and more healthy life; and for those who will come after us!
Maja created the collage below to help raise awareness on adrenal disease! 48607316627_1db35b4b4c_o.jpgThank you Maja for bravely sharing the truth of your battle with adrenal disease. We will make sure YOU have a pump and your life improves.

 

That’s what Adrenal Alternatives Foundation is here for, to lead patients to ALL adrenal alternatives. ❤

 

 

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.
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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. 

Adrenal Alternatives – What We Are Doing

 

We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases.

Our first mission is to align patients with the proper tools they need to live the best quality of life with this disease. We were founded to connect people in the United States to the resources needed to begin treatment with the cortisol pump. We also work to refer patients to all possible options to help manage adrenal disease. This includes naturopathic practitioners, mental health counseling services, fitness instructors, physical therapists, dieticians, medical professionals, caregivers, other adrenal patient networks and resources.

Secondly, we seek to educate the medical community on the truth of adrenal disease. We teach educational seminars to caregivers, EMTs, paramedics and nursing students through our Adrenal Awareness Initiative.

Thirdly, we seek to encourage the adrenal community with our care package program, where we provide adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.

Fourthly, we are actively working to change legislation that all counties in the United States are authorized to administer the life-saving Solu-Cortef injection, which is not currently the case. Not all EMT’s are allowed to give this life saving medication and most ambulances do not have it on board. We are working to change this on a local, state and federal level. We have aligned with organizations such as CIAAG- Chronic Illness Advocacy and Awareness Group and Adrenal Insufficiency Protocols who actively work to legislate for patient rights. Our fifth project is our upcoming Pumps for Purpose program, where we take donated insulin pumps and supplies and repurpose them to adrenal disease patients actively working with endocrinologists to maintain a better quality of life via the cortisol infusion pump.

Lastly, we are working on creating clinical trials and research to create more technology to manage adrenal disease. Unlike diabetics, there is currently no meter to check our blood levels. Adrenal patients must be constantly vigilant of their cortisol levels, which can drop in an instant. Research and technology advances are desperately needed.