Saturday, August 12, 2017

ICYMI, AFAA: Surviving Heat with Adrenal Insufficiency

In case you missed it, I released a video on how to best manage the heat while living with Adrenal Insufficiency. I cover three main things: water, salt, and fludrocortisone.


Surviving the Heat with Adrenal Insufficiency

Many people with Adrenal Insufficiency inaccurate believe that they cannot live in the heat. I have proven them wrong. I have survived summers in Arizona, Iowa, Florida, Georgia, Texas, and even Malaysia. Before I was diagnosed, summers in Georgia and Texas were especially brutal. I have many memories of playing outside as a young child and then suddenly needing to vomit. We did not understand what was happening.

I survived summers in Arizona as well. I had been diagnosed with Adrenal Insufficiency, however my first endocrinologist never put me on fludrocortisone. That was also miserable. I suffered the most painful muscle cramps imaginable. Through later medical testing, we discovered that I am an extreme salt waster and am slightly resistant to fludrocortisone. This means that I need to take a larger dose of fludrocortisone than most.

I point these out to highlight that without proper treatment, heat does not play nice with adrenal insufficiency. However, there are three simple tips to remember that will make the heat much kinder. You need not fear it.

1. Water

I carry a water bottle everywhere I go. I prefer my water either cold or room temperature, with no ice. By constantly carrying it with me, I am able to sip water throughout the day. If you do not have a water bottle, go out and purchase one that you like.

All of my water bottles must pass the drop test, which means I need to be able to drop it and have it not break. These water bottles have all passed my drop test:
Do you have a favorite water bottle brand? Let me know, and I'll add it to the list!

2. Salt

During the hotter months of the year, you will need to increase your salt intake. I accomplish this by overly salting my food. I carry with me a small Tupperware salt shaker in my purse constantly. But sometimes, merely salting my food is not enough. In the summer months, I supplement more heavily with salt tabs. SaltStick Caps, Electrolyte Replacement Capsules are by far my absolute favorite salt tabs. My body responds better to the buffered electrolytes over just pure salt tabs. I take one of these in the morning, one of them at night, and then I will take two of them at a time for every 30-60 minutes of activity in which I am sweating heavily. You can take up to ten tablets a day, and some days I do get close to that limit.

Salty snacks are also incredibly helpful. I'm a black olive girl, but I know many others who would rather go for pickles. I have found that a can of olive brine is one of the most effective energy drinks out there. If you ever find yourself getting extremely brain foggy during the summer months, reach for a super salty liquid. It is not uncommon for me in the hotter months to consume an entire can of black olives, and then drink the olive brine. That's about 2000 mg of sodium, and I find it very helpful for bringing me out of the dreaded brain fog. Find the salty snack that works for you, and keep it constantly stocked.

Recently, I have discovered cheese crisps. These magical, high protein, high salt, gluten free snacks are amazing! Most snack bars are so incredibly sweet and thus these are a welcomed alternative. I also enjoy Moon Cheese, with my favorite flavor being the Gouda.

Do you have a favorite go to salty snack? Let me know, and I'll add it to the list!

3. Fludrocortisone

I find it necessary to have two different doses of fludrocortisone throughout the year: a summer dose and a winter dose. This will vary depending on where you live. For example, when I lived in Nevada or Washington state, I just needed one dose of fludrocortisone year round. But in Texas, in Florida, in Malaysia, in Iowa, and especially in Arizona, I require two different doses of fludrocortisone with a higher dose in the summer and a lower dose in the winter. I know it is time to bump up my dose of fludrocortisone when I can no longer sleep through the night and must wake up ridiculously early to use the restroom.

My body salt wastes. Increasing the salt alone is not enough. Other symptoms (besides frequent nightly bathroom trips) that you might need an increased dose of fludrocortisone include an increased swelling of the hands or ankles, and an increase in your fatigue levels.

If you live in a location with more extreme summers, discuss an increased summer dose with your doctor. I personally need it. That extra half tab in the summer months allow my blood pressure to remain stable, it keeps my electrolytes in range on blood tests, and it lets me sleep through the night without having to wake up every three to four hours to pee.

Now it is possible to take too much fludrocortisone. Too much fludrocortisone will lead to easier bruising, a more prolonged swelling of the ankles, and potential weight gain due to fluid retention. It is also very important to realize that fludrocortisone does not work in isolation. It does absolutely no good to just increase the medicine without simultaneously increasing both your water intake and your salt intake. All three of these things work together. All fludrocortisone does is help your body retain salt, which helps you retain the fluids, which allows your body to remain hydrated.

Closing Remarks

Surviving summer with adrenal insufficiency can be broken down into three simple tips:
  1. Always make sure you carry water with you and drink it frequently.
  2. Increase your sodium intake through salty snacks, salt tabs, and extra salt on all of your food.
  3. Chat with your doctor if you live in a hotter area and see if you could benefit from an increased dose of fludrocortisone during the summer.
And in full disclosure, there is also a very important fourth tip that I should mention. After walking over a mile to a park, filming the video, and walking over a mile back in the peak of the Texas summer heat, I was extra brain foggy and not feeling particularly well. I corrected with an additional two salt tabs and a little bump dose of HC. Three hours later, I was feeling much better!
    4. Recognize the symptoms and pro-actively follow the advice!
In a future blog post, I'll share how I used these four tips and tricks to enjoy several theme parks in the heat of the summer!

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, August 5, 2017

ICYMI, AFAA: Stress Management and Chronic Illness

In case you missed it, Action for Adrenal Awareness released our video for the month of July. In it, Heather speaks about stress management and adrenal insufficiency. It is possible to manage stress with adrenal insufficiency. Over the last ten years of Heather helping her mom manage Addison's Disease and extreme anxiety, she has learned a few things about stress management.


Stress Management

At first, it almost seems like an oxymoron to speak on stress management and adrenal insufficiency in the same sentence. From medical research, we know that stress is how the body responds when it thinks that it is in danger. It makes additional hormones that speed up heart rate, increasing breathing, and enable a burst of energy. This is the flight or fight response. However, those stress hormones are the main ones that people living with Adrenal Insufficiency do not make: DHEA, Cortisol, Aldosterone.

So, what does your body do when stressed if the body’s main stress fighting hormone is in short supply? First, if you have adrenal insufficiency, you are taking cortisol. When you experience a very stressful event, such as illness, injury, surgery, psychological, or emotional stress it is imperative that you increase your medicine. Debby has already discussed this in another video.

But if we do not manage the day to day stress, danger awaits in the form of getting sicker, catching colds, being exhausted, lost relationships, or even going into crisis. Below are Heather's two key takeaways.

1. We cannot always control what happens to us, but we can control how we choose to respond.

This is more easily done with proper cortisol coverage. If you find yourself unable to control your response (be it inappropriate anger, uncontrollable weeping, uncharacteristic rage), try taking a little bump dose of cortisol and see if that allows you to choose a different response.

With proper cortisol, you can choose to respond with anger or with peace. You can choose fear or faith. You can choose revenge or kindness. You can choose to to view yourself as a victim or as a survivor. You can look at things with despair or with hope.

2. We can rewire our brain to respond to stressors differently.

Psychologists say we have an automatic side to our brain that is a reactive response and we have a conscious brain that helps us handle things with more thought and care. We must learn to engage our conscious brain when we are feeling good so that our automatic reactive brain does not go into overdrive during times of high stress. 

Heather worked as a flight attendant. She was trained that her time sitting in the jump seat for the few minutes during take off should be used to consciously breath deeply and imagine things that could go wrong on the flight. She was to visualize every detail, from where she stood, who would be there to help, what doors to use, and what to tell the passengers.

This same theory helps Heather now as a mom and as a caregiver. She wakes up early to visualize peaceful parenting. Heather's mom uses visualizing how she might handle a stressful person. She also uses it to help her plan out how a day is going to go if a little more is planned than the normal.

If you can shift your body’s physiology out of emergency mode with these mindful exercises, you can help your brain remember what it is you really need, and how to get it. You can learn to respond with your conscious brain.

Ten Additional Tips

Below are Heather's top ten additional tips. 

1. Breath


When someone or something upsets you, before you react stop and breathe. Take three deep breaths in and out slowly, and then count down from ten. Rhythmic breathing is also extremely effective. Lie down in a dark and quiet room and close your eyes. Inhale through your nose for ten seconds. Hold that for three seconds. Exhale for ten seconds. As you do this, feel each muscle loosening from the top of your head down to the tips of your toes. Do this exercise for ten minutes and then rest.

2. Write


Keep a stress journal. Write down when things make you feel stressed, and how you reacted. Keep a daily gratitude journal. Write down three things you are grateful for everyday. Keep a log of medicine and food to help. This can help you understand if a medicine or food might be contributing to a stressful feeling. Keep a bucket list. Try to live each of your good days to the fullest.

3. Look into Apps


There are many apps available on both Google Play and the iPhone App store that can lead you through self mediation. Additionally, giving yourself a ten minute time out to enjoy some relaxing nature sounds can be incredibly beneficial.

4. Laugh


Grab a jar of pickles (or olives) and watch your favorite funny movie. Read your favorite funny book. Call or visit a friend that always makes you giggle. Spend time dancing and laughing with children. Watch funny pets on YouTube.

5. Unplug and Say No Thank You


You will have good days and bad days. It is okay to ask for a rain check if you are having a bad day. Good people should understand. If they don’t, they will eventually. And if they never understand, surround yourself with different people. Remove toxic people from your life. Also, turn off the phone, the computer, or the TV every now and then. Allow yourself to rest.

6. Lean on Others


Cultivate your support system. Reach out to friends, family, or support groups. These can be either in-person or online. Seek counseling. You do not have to walk this journey alone.

7. Have a Basic Routine

Photo taken from here.

Sometimes, thinking about all that we need to do can add to the stress. Having a basic routine can help avoid this. For example, Heather's family follows Fly Lady and schedules Wednesday as Desk Day. This day is set aside for tasks that her family has been avoiding, such as prescription refills, scheduling doctor appointments, ordering medical records, paying bills. 

A basic morning and evening routine is also beneficial. Heather's mom has to take her morning cortef with a cup of tea, and then lie back down for a good half hour before she begins her day. She must allow her medicine to kick in before she starts running. She watches the news, sips her tea, and allows the cortisol to work. She also places everything out the night before in order to reduce the stress of the mornings.


8. Be Kind


Find someone to hug. It can be a family member, a pet, a neighbor, or a friend. Hugs help reduce stress. If no one is around, find someone this week to do something nice for. Being kind releases magic inside that helps you get through your next stressful moment.

9. Exercise


This doesn't have to be some big or scary thing. It could be as simple as going on a walk for a few minutes each night. Other things to consider are yoga, swim, Pilates, dance, Zumba, bowling, rollerskating, yard work, house work, shopping. Look on YouTube for exercise programs for beginners.


10. Be Gentle with Yourself.


Aim for at least one day a week to purposefully treat yourself. Some of Heather's favorite treats include a hot lavender and Epsom salt bath, watching a movie, walking through a national park, reading a good book, a visit to the library, enjoying a treat at the favorite coffee or ice cream shop, dancing to loud music, calling a friend, creating something, or learning something new.

Closing Remarks

While this list of things will help with stress management, it is very important to note that thinking positively and going for a nice walk will never replace missing cortisol. If the stress has gone on for too long, increase your medicine and seek emergency medical attention immediately.

Be kind and gentle to yourself always. This is the best form of stress management there is. 

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.

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.

Saturday, April 1, 2017

Not Yet

Living with a chronic disease that requires daily medicine can be quite difficult at times. It is easy to slip into depression and hopelessness. 
I am done doing that. 
I choose life. I choose optimism. And I choose to share some of my stories here. 
I want people to know that I am Clearly Alive.
This is not an easy choice. There have been many times that I just wanted to give up. To stop taking all of my medicine. To quit fighting. It appeared easier to just surrender.

This is a dangerous loop.

Recently, one of my friends decided that she no longer wanted to be alive. She stopped taking all of her medicine, including her cortisol steroids. Thankfully, someone found her and immediately gave her an emergency injection of solu-cortef.

Check out Project ;
As I grappled with the fact that she attempted to carry out what I so desperately wanted to do, I was overcome with grief. But then other thoughts entered my mind.

I am not done yet.
We are not done yet.
Our story is far from over.

I am not done yet.

I started stitching these little butterflies on top of a semicolon. The blue butterfly represents hope within our Adrenal Insufficiency community. The semicolon represents a sentence that the author could have ended, but chose not to. The sentence is your life, and the author is you.

Each butterfly will be unique.
I am not using a pattern.

I will be selling these on Etsy. Each butterfly is a bit different. Each hand stitched "Not Yet" is far from perfect, but I find that fitting for such a message. We are all so very different and we are all so very far from perfect.

Handmade by me.

This design can also be found at my Zazzle store. Proceeds benefit NADF, AIU, and keeping the theoretical steroid curve plotter live.

Necklace can be purchased here.
And remember, Zazzle is ALWAYS running some sort of sale.

Will you join me in proclaiming "Not yet"?
Will you join me in our fight to remain Clearly Alive?

I mentioned suicide in the post above. I want to inform my readers that I am safe. I have a good network of support that regularly check in on me. Before I was properly diagnosed with Adrenal Insufficiency, I struggled with a dangerous voice inside my head that would tempt me to hurt myself. A few times, I would listen to it. A few times, my mom would have to come in and forcibly stop me. 

With proper cortisol coverage, that voice is silenced.

If I am ever overwhelmed while running low on cortisol, that unsafe voice returns. I am learning to recognize it quicker and react. I seek out help. I speak openly about it. By speaking openly, I can have accountability. Through accountability, I can remain Clearly Alive.

If you are struggling, know that you are not alone and do not be afraid to seek help.
I want us all to remain Clearly Alive.

Sunday, March 12, 2017

ICYMI, AFAA: Adrenal Insufficiency Knows First

In case you missed it, Action for Adrenal Awareness released March's video on YouTube. For March, Debby spoke on how Adrenal Insufficiency knows first.




Adrenal Insufficient Knows First

I had to receive my emergency injection on March 10th, 2017.
Debby begins by telling us about an episode she had recently. She was just sitting in a chair, playing a computer game when she suddenly had a buzzing in her ears, became dizzy and momentarily blacked out. The next day, she was sick.

Her adrenal insufficiency flared long before any other "normal" symptoms of the illness occurred.

If she ever starts crying for no reason, or is very sleepy, she knows an illness is brewing. Other people struggle with brain fog or slurring of speech. Personally, I struggle with coordination and an increased dizziness. Whatever these symptoms are, it is very important that you learn how to recognize them. It is our early warning system.

Upon noticing any of her symptoms, Debby immediately updoses. Please check with your doctor and determine your own course of action for updosing. For Debby, she'll take 5 mg of HC and then wait 30 minutes before she re-evaluates. For me, I set a temporary basal rate on my cortisol pump that allows me to increase my medicine by a certain percentage.

Also, women, be mindful around your monthly cycle. Some women (I fall into this category, by the way) notice low cortisol symptoms kicking in a day or two before they begin their cycle.

Why does this happen? Why does Adrenal Insufficiency always seem to know first that something is going on in our bodies? Our immune systems are compromised. They do not respond to infections and stress in a normal or typical way. Clinical presentations of infections may be atypical. Also, the severity of the infection may be masked, which allows the infection to become advanced before being recognized.

We will feel the low cortisol symptoms long before the actual symptoms of the virus or illness show up. I can definitely relate to that statement.

Jo, another blogger within the Adrenal Insufficiency realm, just posted her experience with AI knowing first here. Her husband, Derek, had a few off days with his Adrenal Insufficiency before they discovered he had a UTI. Through pro-active up-dosing, she and Derek were able to avoid a hospital stay!

Low Cortisol Symptoms

It is important to recognize your most common low cortisol symptoms, as we all respond differently. Learning how to updose is very empowering.

Below are a few common symptoms. Do any of these stand out to you? Are there any that we missed? Please, comment and add them below!

  • Rapid Heart Rate
  • Forgetting Words
  • Zoning Out
  • Anxiety
  • Blank Stare
  • Hunger
  • Forgetful
  • Perplexed
  • Sweating
  • Brain Fog
  • Tiredness
  • Clumsy
  • Irritated
  • Confusion
  • Blurred Vision
  • Shakiness
  • Apraxia (inability to perform particular purposive actions)
  • Bewildered
  • Disorientated
  • Inappropriate Behavior
  • Mood Swings
  • Exhausted
  • Frustrated
  • Weakness
  • Crying
  • Headaches
  • Depression, Nervousness
  • Noise Sensitivity
  • Depression
  • Exaggerated Startle Response
  • Fatigue
  • Cramping
  • Flank Pain
  • Low Blood Pressure
  • Low Blood Sugar
  • Lack of Appetite
  • Dizziness

Photo from here.
Photo from here.

Did we forget anything? Please comment below! 
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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, March 11, 2017

ICYMI, AFAA: On Diet, Weight and Food Intolerances

In case you missed it, Action for Adrenal Awareness released February's video on YouTube. For February, Kim spoke on diet, weight and food intolerances.

Although there is no defined diet for those with Addison's Disease or Adrenal Insufficiency, how we eat can make a big difference in how we feel and our weight.


General Guidelines

Most guidelines start out very vague.
  • Higher sodium, watch the potassium.
  • Three balanced meals a day.
  • Make sure you drink enough water, especially when it's hot outside.
As Kim interacted with more people in various support groups, she found other tips such as...
  • Avoid gluten.
  • Limit carbs.
  • Treat the hypoglycemia with multiple small meals throughout the day with a combination of carbs and protein.
  • Avoid dairy.
  • Avoid white sugar.

Some Basic Principles

Kim would like to remind us that before starting any dietary change, please consult with your doctor first. And health always always ALWAYS comes before weight. She also comments on how sensitive our bodies are and encourages us to handle them with care. And to be patient. You may have to try several different things before you find what really works well with you.

How AFAA Eats

Kim then explains the general diets that our team follows. As you can see, we all do something a bit different.

Debby

Debby eats light. She avoids potassium but loads up on sodium. She limits carbs and sugar and starts each morning with a breakfast of yogurt and blueberries. When I visited her in November, she treated me to one of her blueberry shakes. For her dinners, she eats a balanced meal that contains meat, veggies and some sort of side.

Nichole

Nichole follows the ketogenic diet. She strives to have her food consist of 70% good fat, 5% carb, and 25% protein. She uses macros based off of her individual measurements, energy expenditure, and physical activity.

Our team would like to state that you should not start a ketogenic diet without the consultation of your doctor first. Also, people with certain medical conditions should not follow this diet. However, the ketogenic diet has worked well for Nichole.

Amber

For me, I started reacting to dairy at a very young age. I've never really been able to drink milk, but I can handle cheese and yogurt. I must be very careful of my sugar intake and I avoid caffeine. I mostly drink just water, and I carry my water bottle everywhere I go.

I also have been gluten free since September 2013.

Something happened during my nightmare crisis and suddenly my body could not handle gluten. I must confession that this dietary change has left me rather bitter. Kim can relate. She has a very limited diet and it's hard to not be able to enjoy traditional food. She encourages us to grieve that loss, because it is a loss. If you are struggling, please reach out to us. We understand.

Kim

Kim's food sensitivities caused her chronic inflammation. She started out with no gluten, lower carbs, and following the hypoglycemic protocol. Although the changes helped, they did not completely eliminate the problem. Her endocrinologist discovered she had insulin resistance. Through treatment, she was able to loose some weight. Yet the chronic inflammation did not go away. After her diagnosis of EDS, she completed a food sensitivities test. Learning about her food sensitivities helped her modify her diet.

For a while, Kim followed the Autoimmune Paleo Diet protocol. This is an elimination diet tailored for people with autoimmune diseases. You stop eating a food for a minimum of thirty days. After that, you reintroduce it back into your diet. If you notice a reaction, then stay away from it.

After completing that, she switched to a rotation diet. She highly recommends keeping detailed records for this diet as each family of food can only be eaten every few days. Although it is a difficult diet to follow, it has worked well for her.

Final Thoughts

As a team, we would like to stress again that health always comes before weight. Do not manipulate your meds or restrict your food in an attempt to lose weight gained by your medicine.

Also, there are more options out there than you think. What we follow may not be the answer for you. Find something that works for your individual body, while keeping your main priority as your health. Keep asking questions and keep searching. Eventually, you will find an answer.

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, March 4, 2017

Reno Run 4 Love

When I first introduced my husband, I introduced him as my running buddy. This title started during college. Back then, he kept me safe during long runs in a questionable part of town. After he graduated, we ran a five mile race together with less than a day before he had to report to his job in Iowa. He finished the race and then drove fourteen hours to report to work the next day.

Cinco de Miler. May 5th, 2013.
When we returned from Malaysia, we ran races together all over Dallas. These included everything from 5k's to a half marathon.

Dallas Rock-n-Roll Half Marathon Relay. March 2015.
Then life got busyChaoticUncertain. We stopped running together. We were in survival mode, attempting to just stay alive.

Marriage is hard.
Life is hard.
Being chronically ill is hard.

It is easy to get bogged down by the "hard" and forget the "good."

I was drowning.

I saw an advertisement for a new race through downtown Reno for Valentines Day. I asked my husband if he was interested in running a race with me.

Would I like to run four miles with someone I love?
I think yes.
Confession: I did not train for this race. Life is still too hectic for me to establish a regular running routine. We woke up morning of, I increased my meds, and ventured to the cold downtown area. I do hope to start regularly running once the weather warms up.

It's cold!
Want the shirt? You can order it here.
Proceeds benefit NADF, AIU, and keeping the Curve Plotter live.
During the race, we stopped along the way to take pictures of the Truckee River. We have had a record wet winter, and as such the river was swollen to capacity.

This is a very full river.
As I turned the corner and saw the finish line, I started sprinting. My husband was chatting with two lovely ladies as I took off. It caught him off guard, but he is much faster than me. He was still able to catch me, even with my head start.

Gun Time: I won. I crossed the finish line before him.
Chip Time: He beat me by a second!
Reno Run 4 Love marked a fresh start for us. It was a reminder that, first and foremost, I married my Running Buddy, my best friend. We must continue to make each other a priority and spend time building on our relationship. We have been married for three years, but we cannot take each other for granted if we plan on staying married.

This is our home.
This year, we want to run more races together. We already have several mapped out. Our next one is a "flat" 5k on March 12th. Look for pictures on my facebook page or instagram.