Maja’s Adrenal Disease Story

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

21370839_1505993199422311_6007853849743063855_n.jpg

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!

21106381_1495671243787840_4012795697455293368_n.jpg

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. ❤

 

 

Sarah’s Success with the Cortisol Pump

A personal testimony of Sarah’s story with the cortisol pump.

 

When a person’s liver goes bad, they can get on a transplant list for a new organ. When their heart or lungs give out, they have the same possible options. When a diabetic reaches a certain level of instability, they’re offered another alternative, a continuous infusion pump for insulin.

When a person’s adrenal glands stop working, there is no transplant, or medical miracle. For many, it’s a pill 3-5 times a day, and they can get back to life as usual for the most part.

For some of us, though, the oral steroids don’t work. Sometimes it’s a malabsorption issue. Sometimes it’s a rapid metabolism issue. Sometimes it’s gastroparesis (slow stomach processing) or rapid gastric emptying. Sometimes we don’t understand the cause, just that oral steroids keep us alive, but quite unwell.

That was the case for me. 

I took oral hydrocortisone, split into 6 daily doses for a total of 25 mg when I was first diagnosed. I saw very little improvement, and was still experiencing low cortisol symptoms regularly. We tried increasing my dose to 35mg daily total, with no improvement. 

I was in the ER at least once a month! My favorite Adrenal Disease Support Group was filled with members who had experienced similar lack of improvement with oral steroids. They tried Prednisone, dexamethasone, sometimes specially compounded or extended release hydrocortisone as available in their countries, but each had the same result.

The oral medication just wasn’t working.

I asked my Endocrinologist if we could consider trying subcutaneous dosing of the solumedrol I had on hand for my emergency injection. Though, I’ll be honest, I tried it myself for two weeks prior to my appointment so that I could approach my doctor with evidence that it had changed things for me.

I was lucky my doctor wasn’t upset with me for trying something without talking to him first. I definitely recommend discussing your treatment with your doctor first, for your own safety!

He was, however, impressed that I was actively trying to find a better solution for managing my health.During this appointment, we discussed how much better I felt, even though I was still requiring 6 doses a day. That meant 6 injections a day, including throughout the night. Solumedrol is a longer acting steroid, so I should have been able to dose every 6-8 hours, but for reasons we still don’t know, I needed it every 4 hours.

My doctor recommended that we try oral Prednisone and oral dexamethasone first to be sure that neither would work for me, and over the course of the next few weeks we realized that not only did Prednisone not work for me, but it made me so agitated and angry that the Hulk looked like a sweet kitten…

Dexamethasone was much better for my demeanor, and I felt great for about 6 hours, but it’s supposed to last for 24! Ultimately, we decided that the subcutaneous injections were necessary, and we started the conversation about using a continuous infusion pump so that I could get some sleep!

During the next 5 months, I was still finding myself in the ER for fluids and IV hydrocortisone at least once a month. We were looking into the logistics of a modified infusion pump, as use for cortisol instead of insulin is “off label” and not typically covered by insurance.

Though there are an increasing number of studies about how beneficial continuous hydrocortisone infusion is for the life expectancy and quality of life for AI patients (see links at the end of this post), insurance companies and even most endocrinologists are hesitant to use them. Mine, a top endocrinologist in the country, had never heard of it before.

I gathered research for him, and we talked at length about the benefits and risks. By December, I’d found an extra pump and supplies, and was ready to get started. I had a procedure in the hospital, due to my chronically crappy veins I had a port-a-cath implanted, which resulted in a longer stay. They accidentally punctured my lung!

While in the hospital, they gave me IV boluses of hydrocortisone every 6 hours. They were trying to figure out why my blood pressure was crashing, and why I was not stabilizing.The doctor and I chatted about my need for continuous infusion, and by day 4 in the hospital, he had agreed to put the solucortef directly into the saline bag instead of the every 6 hour bolus.The change was immediate. My blood pressure stabilized, I was able to get up and move around the room again, and by day 6, I was ready to go home.We immediately finished getting the infusion pump set up with my local doctor (who is amazing and was with us through the process and discussion as well).This was six months ago.

Since the beginning of my continuous infusion, I have been to the ER twice. Both times due to norovirus and dehydration, though my cortisol was still very well managed at home.

This new “artificial adrenal gland” was an epic adjustment to my quality of life. I have gone from dozens of ER visits by this time last year, to two total this year. I have been able to teach a small community education class (I can manage about 2-3 hours a couple days a week for about two weeks at time now, where I couldn’t before!) I can go to Walmart and not need the electric wheelchair. I can walk around the block. I’m averaging 4-5 thousand steps a day now, instead of 1-2 thousand.

Am I back to “normal”? Nope. But my new normal looks a hell of a lot better now.

For more research regarding the infusion pump for cortisol check out my collection on Google Drive: Cortisol Pump Research

 

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.

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

 

Understanding Adrenal Disease

Adrenal Diseases-

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

 

Body Chemicals Affected in Adrenal Insufficiency-

Cortisol– Glucocorticoid hormone: The body’s stress hormone.

Aldosterone– Mineralocorticoid hormone: Regulates electrolyte balances by instructing the kidney to release potassium and retain sodium.

DHEA– Hormone that aids in the production of androgens and estrogens (male and female sex hormones)

(Blood sugar levels and electrolytes can also be impacted)

Diagnosis-

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.
Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Easy Explanations-

Most people understand what diabetes is. Diabetes is the lack of the appropriate amount of insulin. Diabetics have to be vigilant of their blood sugar levels and manage their disease with insulin shots/pumps. This is very similar to Adrenal Disease. Just the like the diabetic, the AI patient has to have an external source for their deficiency, but instead of insulin- we replace cortisol. Unfortunately, unlike the diabetics, we have no meter to check our cortisol levels. We have to physically watch our symptoms and stress dose or use an emergency injection if we drop too low. Lack of cortisol is DEADLY. An adrenal crisis will occur if an AI patient does not have cortisol replacement.

Adrenal Crisis-

An adrenal crisis presents differently for everyone,
depending on which form of AI the person has.
Some possible symptoms are-
Blood Pressure/Heart Rate Changes, Weakness, Vomiting, Trouble Breathing, Anxiety, Flank/Back Pain,
Mental changes. These are not the only symptoms-
Everyone presents differently. It is important to always
wear a medical alert bracelet and have an emergency injection with you AT ALL TIMES.
Adrenal Crisis WILL result in death if left untreated.

Treatment of AI-

Medications such as Prednisone, Dexamethasone & Hydrocortisone replace the steroid hormone, cortisol in the body.

The medication Florinef (Fludrocortisone) is used to treat the lack of aldosterone in the body. Not everyone with AI needs this medication, it is mainly used in primary addison’s disease patients.

Side Note- Everyone is different! Not all steroids work for everyone!
Find the right one for YOU with your endocrinologist!

Managing adrenal disease is different for everyone,
but the absolute essentials for EVERY AI patient are-
Daily Replacement Cortisol Medication
Proper rest, hydration, stress management and nutrition.
Knowing the signs of low cortisol (there is no meter to check blood levels)
Respecting the physical limits of your body
Having an Emergency Injection of Cortisol at all times
Wearing a medical alert bracelet at all times

Adrenal disease certainly presents with  it’s own unique challenges,
but it is not impossible to live a happy life with A.I.

Proper self care, medication and stress
management is imperative to living
the best life possible.

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

Sources-

http://www.healthline.com/health/acute-adrenal-crisis#overview1https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease

http://www.medicinenet.com/script/main/art.asp?articlekey=2191http://www.mayoclinic.org/drugs-supplements/dhea/background/hrb-20059173https://pituitary.org/knowledge-base/disorders/adrenal-insuffieciency-addison-s-disease