Monday, July 31, 2017

An Open Letter to the Running Buddy

Running Buddy,

I am sorry that our marriage was not what you pictured. I have always been honest with you.

My name is Amber.

You often stated that you wanted to marry Amber and not Addison's. However, you cannot have one without the other. They are intricately intertwined.

I can honestly state that I gave our marriage my absolute best. When I learn to do better, I strive to do better. I have spent the past three years working with my cortisol pump to manage my disease.

But notice how I use the word manage, and not cure?

There is no cure for Addison's Disease.

The flares of this disease are triggered by stress. We have had a bit of stress during these three years, have we not? Let us do a quick recap:
  • We moved internationally three days after getting married.
  • I was the only one employed during the first eight months of marriage.
  • Five months into your employment, you stated that you cannot live in Texas. You needed to leave. I said find another job and I shall follow you wherever you lead.
  • You found a job in Nevada.
  • You lost that job in Nevada.
  • You still move, unemployed.
  • I join you in Nevada, three months later, while you are still unemployed.
  • I started working, shortly after moving to Nevada.
  • Through my networking, you are gifted a job.
  • We purchased a house. 
  • You immediately moved into that house. But you required me to remain at the apartment forty-five minutes away for an additional five months.
  • On the day that I moved into the house, you inform me that you are done, burnt out, and cannot continue on with our marriage. You told me that I needed to leave.

Let us consider the fact that I do not have working adrenal glands. I handled each one of these situations to the best of my ability. But when it becomes clear that my best shall never be good enough for you, it is time for me to cut my losses and and for us to go our separate paths.

Do know that I helped you accomplish your dreams. Through my actions you have your job, your house, your puppy, and your vehicle.

You are welcome.

Also, do not worry about me.

I have weathered much tougher storms.

The fact that Addison's Disease has not killed me gives a testament to how much I can survive.

But I shall not merely survive.

I am Clearly Alive.

Dear Readers, I want to let you know that I am safe. I am free. I have escaped. I would not have been able to accomplish that task without the incredible support of my family and friends.

If you are in an abusive relationship, know that you can get out. There are resources available to you, and many stories of encouragement from survivors. 

Do not be afraid to ask for help.

Also, know that abuse escalates. 
Often, it escalates rapidly.

I would like for all of us to remain Clearly Alive.

Saturday, July 22, 2017

ICYMI, AFAA: Primary vs Secondary vs Tertiary Adrenal Insufficiency

In case you missed it, Action for Adrenal Awareness released our video for the month of June. In it, Nichole gives a very brief overview of the different types of Adrenal Insufficiency. She describes primary adrenal insufficiency (a problem with the adrenal glands), secondary adrenal insufficiency (a problem with the pituitary gland), and tertiary adrenal insufficiency (a problem with the hypothalamus).



PAI vs SAI vs TAI Explained

In the purest sense of the words, adrenal insufficiency means that the adrenal glands are insufficient at producing hormones necessary for life. There are three main classifications for how the adrenal glands became insufficient. For primary adrenal insufficiency (Addison's Disease), the issue is caused by the adrenal glands not functioning. In secondary adrenal insufficiency, the issue with the adrenal glands is only a secondary problem. The main cause is the pituitary gland. With tertiary adrenal insufficiency, lack of cortisol is actually the third issue with a sub-par hypothalamus being the main cause.

Photo retrieved from EndocrineSurgeon.co.uk

Primary Adrenal Insufficiency

Primary adrenal insufficiency occurs when the adrenal glands fail to produce adequate cortisol to cover the body's needs. 70% of all cases of primary adrenal insufficiency are caused by idiopathic atrophy of the adrenal cortex. 30% of the cases are caused by a granuloma. It is important to note that Addison's Disease refers specifically to primary adrenal insufficiency caused by an autoimmune disease. There are several other types of primary adrenal insufficiency, such as congenital adrenal hyperplasia (CAH), or the result of a double adrenalectomy.

With PAI, you will have low morning cortisol, low random cortisol, and a high ACTH reading. This is the pituitary gland SCREAMING at the adrenal gland that something is wrong and the adrenal gland is not doing its job. Elevated ACTH levels can also lead to hyper-pigmentation also referred to as the famous Addy "perma-tan."

Often, PAI requires the replacement of all three major hormones produced by the adrenal cortex. Cortisol is replaced with either hydrocortisone, prednisone, or dexamethasone. Aldosterone is replaced with the mineralocorticoid steroid fludrocortisone. And DHEA (a precursor to testosterone) is replaced with DHEA supplements.

There is no cure for primary adrenal insufficiency, and treatment will require lifelong use of steroids.

Secondary Adrenal Insufficiency

Secondary adrenal insufficiency is far more common than primary adrenal insufficiency. It occurs when the pituitary gland fails to produce enough ACTH (adrenocorticotropic hormone). The most common cause of ACTH suppression is use of glucocorticoid steroids to treat other illnesses.

Glucocorticoid steroids are synthetic hormones that act like cortisol. These include cortisone, hydrocortisone, prednisone, prednisolone, and dexamethasone. All of these medications have an effect on ACTH production. The pituitary gland produces ACTH as a response to the body's cortisol need. When the pituitary gland senses any of these medications, it recognizes that cortisol is present and therefore produces less ACTH. This leads to ACTH suppression, and potentially, inadequate cortisol coverage.

ACTH suppression from medication can be classified into three main categories: temporary, short term prolonged, and permanent. The length of suppression depends on the dose, potency, and length of time the medication was used. According to NADF, a few days on prednisone should have a limited ACTH suppression. However, a few weeks of prednisone at a dose of 10 mg a day will diminish the cortisol level along with the body's ability to respond to a stressful situation.

The NADF likes to use the following general guideline: For each month on a suppressive dose of corticoid steroids, it will take the body one month to recover. On more than 10 mg of prednisone a day for three months? Expect to take an additional three months to recover after you have been weaned down. This works up to the 9-12 month mark. If you have been on steroids for longer than 9-12 months, expect it to take many years for your hypothalamus - pituitary - adrenal (HPA) axis to recover, if recovery is even possible.

It is very important to note that SAI is at equal risk of an adrenal crisis to PAI. Secondary adrenal insufficiency is not a less dangerous form of primary adrenal insufficiency. You can still experience an adrenal crisis. It is incredibly important for you to wear a medical alert bracelet and carry an emergency injection.

Tertiary Adrenal Insufficiency

Tertiary adrenal insufficiency is a relatively newer classification in the adrenal insufficiency world. It occurs when the hypothalamus does not produce enough CRH (corticotropin-releasing hormone). CRH is used to tell the pituitary gland to produce ACTH, which then signals the adrenal gland to produce cortisol. It can be caused by long term glucocorticoid steroid use, or after the curing of cushing's disease (too much cortisol).

Tertiary adrenal insufficiency will show low / normal ACTH blood levels at 8AM similar to that of SAI. It can be differentiated from SAI with a CRH stimulation test. This test measures the amount of cortisol in your blood before and after you are given an injection of a synthetic form of CRH.

Closing Remarks

It is incredibly important for a physician to thoroughly review your entire medical history and your symptoms. This will help determine which category you fit into, if your disease can be cured, and help determine the best method of treatment. An inappropriate wean from steroids puts you at a great risk for an Adrenal Crisis.

If you do not believe that your physician is a proper fit for you, seek out a second opinion. Find a doctor that is willing to work with you. Also, reach out to online support groups and others familiar with your disease. Our goal is to help you find the best treatment method possible.

Did we forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!

Medical Disclaimer

All content found on this website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

By using this website, you acknowledge and agree to and accept these Terms of Service, including all policies and terms linked to or otherwise referenced herein.

Reliance on any information provided by this website is solely at your own risk.

Saturday, July 15, 2017

ICYMI, AFAA: The New Normal

In case you missed it, Action for Adrenal Awareness released May's video on YouTube. For May, the topic was The New Normal. When diagnosed with a chronic health condition that can quickly become life-threatening, the definition of "normal" is quickly redefined.

Kim, Debby, and special guest Susie all gave input and insight into their "new normal," how they have adapted to with Adrenal Insufficiency.



Finding the New Normal

Debby was diagnosed with Adrenal Insufficiency in 2002. Kim was diagnosed in 2013. Susie was diagnosed in 2015. But for each of these ladies, finding their "new normal" took a bit of time.

Susie states it took her about a year. For the first nine months after diagnosis she was faced with a hospital admission every three to five weeks. This was mainly due to improper steroid coverage. At the start of her diagnosis, her doctor advised her to just take 20 mg of HC, once a day. Through her own research, she realized that this was far from optimal. She tried many different types of steroids and dosage regimes, but always ended up back in the hospital. During one of her hospital stays, she and her medical team realized that she responded better to solu-cortef injections instead of hydrocortisone tablets. She now injects herself five or more times a day with solu-cortef instead of swallowing pills.

For Debby, her adrenal crisis leading to diagnosis caused significant brain damage, which affected her memory. She took about two years before finding her "new normal." This included accepting her limitations, learning all that was still possible, and figuring out what dosage schedule worked best for her. Acceptance does not happen overnight.

Kim says it took her about a year before she accepted her "new normal" with just adrenal insufficiency. But it took her much longer to process the changes that came with that new normal.

It is normal to grieve. Please remember that this process takes time.

Defining the New Normal

Susie is still able to work full time, but she knows that she would be unable to achieve her success without the support of her husband. Additionally, her kids are grown and out of the house, which she admits makes things easier on her. Three to four nights a week, she does fluids at home. She can still manage activities, but she must plan for them in advance and try to not push herself too far.

Debby notes that to the people who do not know her, she looks completely normal. She often hides how she is truly feeling. But she does rest several times a day. Her life is now centered around her family, her pets, and her baking business. Her husband also does a really good job of stepping up when she is not feeling well.

Kim admits that her life has changed drastically, but not necessarily just because of her Addison's Diagnosis. Before, she was always busy, always go-go-go. Now, life is a much slower pace. She does what she can, and tries to remain positive.

Coping with the New Normal

At times, Susie needs to have a good cry. She tries to follow "mind over matter," and definitely relies on her faith, family and friends. But there are days where she just curls up in bed and has a long, good cry. But she does not dwell in the crying phase. She wipes the tears away, picks herself back up, and moves on. She figures out what she needs to do and how she should do it. I have written about the benefit of that mindset previously here.

Debby states that it is perfectly normal to be depressed about this "new normal." She encourages us to not dwell on the past. Do not look back and wish you could be healthy again. Take every day a day at a time and look forward. Once Debby became stable, she was able to put her Addison's Disease more on the back burner. It is something that she must be aware of, but it does not define or control her. Addison's is not who she is, it is just something she must deal with.

Kim would like to remind us that it is normal to go through the grieving process. There is the bargaining and there is the denial. There are the emotions and the feelings. And then there is the acceptance. However, we will never have closure. Be prepared to revisit all of the stages of grief multiple times during your journey with a chronic illness. And having a good cry is extremely healthy.

Discovering Purpose

Like many of us immediately after diagnosis, Susie made it her mission to learn as much as possible about this disease. She is the support group coordinator for her local NADF chapter and an admin for a Facebook support group. She wants to prevent unnecessary deaths, and she can through education and awareness.

Debby wants to use her life story as an example to give hope. She was comatose for almost two weeks and was not expected to ever recover. And yet, she did. She was given a second chance at life, and she will always appreciate that second chance. She uses it to love and care for those close to her. She is also passionate about helping others who are struggling.

Since diagnosis, Kim has discovered more meaning in her life. She has been given a different perspective. She understands the importance of making the most out of every day. She wants to continue to help others and to pass on the beauty of our community.

Closing Remarks

Susie is grateful for the advocacy work that we are doing. Debby would like to remind us that we do deserve to have a good life through more research and more awareness within the medical community. We are all unique and we should never stop striving to find our new normal. We can do this through education and continuing to fight to be the very best we can be.

Kim reminds us how we are all very different and we are all in different places in our diagnosis journey. And yet, we can continue to help each other out. Life can still be good and meaningful. Purposefully work towards finding your new normal.

Did we forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!

Medical Disclaimer

All content found on this website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

By using this website, you acknowledge and agree to and accept these Terms of Service, including all policies and terms linked to or otherwise referenced herein.

Reliance on any information provided by this website is solely at your own risk.

Saturday, July 1, 2017

ICYMI, AFAA: Meet Heather!

In case you missed it, Action for Adrenal Awareness has added a new member onto our team. While Kim, Debby, Nichole and I all live with some form of Adrenal Insufficiency, Heather has joined us to represent the voice of a caregiver. Heather supports her mom, who was diagnosed with Primary Adrenal Insufficiency (Addison's Disease) in 2008.


Pink Converse in the Emergency Room

Heather's mother had been ill for a good part of Heather's life, but the real trouble began around 2000. She was in and out of emergency rooms constantly. Her mom would come to Heather, or her brother, stating that she needed to go to the ER. Her mom would always be wearing her LSU shirt and pink converse on.

Heather and her brother became so exhausted from trying to explain each ER visit that they began texting one another Pink Converse. That would set off the prayer and support chain. No need to explain. No energy to explain. No time to explain. Pink Converse.

"Pink Converse" = Another ER Trip

The doctors were all baffled. They only treated the symptoms:
  • Low blood pressure? She got blood pressure meds. 
  • Stomach issues? They removed her gall bladder. She had multiple scopes. She had the balloon endoscopy surgery, not once, but twice.
  • In pain? They gave her pain meds.
  • Dropping weight quickly? An endocrinologist told her to eat more protein.
  • Salt cravings? Eat cheeseburgers and Tex Mex.
The fatigue caused Heather's mom to miss out on many things. She started dealing with confusion and dizziness and black outs while driving. Specialist after specialist continued to just treat the symptoms:
  • She became sensitive to the sun. Now, she saw a dermatologist.
  • She got headaches and was given medicine for that.
  • She had low Vitamin D and Potassium, and got vitamins for that.
  • She could not sleep, and got medicine for that.
  • She got moody, irritable and depressed and they gave her medicine for that.
  • She had chest pains, and got medicine for that.

By 2007, her med list had grown along with her symptoms. But there was no improvement. Meanwhile, Heather was attempting to help her mom while simultaneously planning a wedding. On Heather's wedding day, her mom was pushing through as much as she could. She was down to 78 lbs and was unable to gain weight.

Photo from 2007.
A few weeks after the wedding, Heather's mom drove herself to an endocrinologist. He initially had no answers. She cupped her face in her hands and bawled. She told him she was ready to check herself into a mental hospital because no one believed her. No one could help her. She felt terrible every day. Every day was a fight, but nothing came up on the tests. 

Photo from 2007.
The endo started going over her tests with her. He looked at her medication lists. He told her that some of her medications were probably interfering with her tests. He felt like the low cortisol, digestive issues, sensitivity to sun, fatigue, pain all pointed to Addison’s Disease. He shook his head that it had not been brought up sooner. He ordered an ACTH test immediately.

The ACTH test was a confirmation. 
Heather's mom was not making cortisol. 

But a diagnosis did not immediately equate to better care. One particular ER team didn’t know about Addison’s Disease and did not recognize her mother's adrenal crisis. Her mother had trouble answering questions and explaining what was wrong. Without an advocate, Heather's mom was inappropriately placed in a psych ward overnight with an IV until further evaluation. She was humiliated, defeated, weak, frustrated. She needed a fighter.

That’s when Heather joined the fight.

By 2011, Heather's mom had a new internist, neurologist, and pain management doctor on her team. People were starting to understand the disease better. Slowly, the family began to see improvements. But Heather still refers to 2010 and 2011 as the lost years.

At the end of 2013, Heather and her husband adopted two precious children. The pitter patter of tiny feet into the home brought joy and stress. Her mom was happier than she had been in years. She didn’t have the energy to help with the kids too much, but she sat with them, played with them, read to them, and cuddled them. Every now and then, she could even muster the strength to go out to lunch or on a small trip with Heather's family. The kids learned quick that Mimi was ill and they needed to take good care of her.

Then the worst crisis to date occurred.

Heather's mom just had medication added to her pain pump that Friday. She did not feel well and stayed in her room all through the weekend. By Sunday, Heather was frightened. Her mom was loopy. Confused. Unable to focus. Heather realized she had not eaten, so Heather made her a sandwich. Her mom fell asleep in the plate of food.

Heather checked her mom's blood pressure. It was lower than Heather had ever seen. Just then, Heather's brother in law stopped by. He tried to talk to Heather's mom. He shined a flashlight in her eyes. She was not responsive. 

Pink Converse.

All they had to say at that ER was "BP is less than 70/40. Confusion. Adrenal Failure." They did not make her wait. They did not make them sign forms. They raced her to the back. Heather told the doctor that her mom had a small procedure on Friday and had been resting all weekend. Heather was afraid that her mom may have missed her steroids. The ER doctor screamed, "This is TEXTBOOK ADRENAL FAILURE. MOVE!!!!!!"

Her mom’s kidneys began to fail. Her temperature dropped. They had to put a heater under her. Heather held her mom's hand tight and prayed over her. Heather felt so guilty. Over the years, Heather had times where she made sure her mom took her medication. But Heather stopped because her mom wanted her independence back.

Heather had to respect her mother, and yet help her, at the same time. The job of a caregiver and yet still a daughter is a challenge. Her mom still wants to be her mom and help Heather, and always will. But sometimes, Heather has to jump in and mama her mom. That’s tough for both of them.

Her mom was in ICU for a full week and in the hospital for another week. Because that young ER doctor recognized the emergency and acted on it quickly, Heather's mom is still alive.

And today?

Her mom continues to have great days and miserable days. Heather continues to administer injections when her mom feels ill. Her family knows the ER crew here by first name, and how to talk to them. Her mom is driving again. She sometimes get outs for a walk or to shop or have lunch. She loves spending time with her grandchildren.

Heather's mom, surrounded by her family.
And the pink converse?
Well, they are still here.
Heather still texts her brother Pink Converse sometimes.
And he knows to start praying.


Did we forget anything? Please comment below! 
Have a suggestion for a future topic? Suggest it here!

Medical Disclaimer

All content found on this website, including: text, images, audio, or other formats were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. 

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

By using this website, you acknowledge and agree to and accept these Terms of Service, including all policies and terms linked to or otherwise referenced herein.

Reliance on any information provided by this website is solely at your own risk.