Saturday, September 16, 2017

Of Star Lord and Mickey: California, Part 3

The last time I had visited Disneyland was for a high school band competition over ten years ago. During my trip to California, we were able to visit both California Adventure and Disneyland. We began the day in the less crowded park, California Adventure.

California Adventure

California Adventure has changed since I last visited. One of the first noticeable changes happened to the roller coaster on Paradise Pier. The loop used to have Mickey's ears! I guess they moved the sun to the roller coaster and Mickey Mouse to the fun wheel.

You can see my cortisol pump attached to a holder on my arm.
That remodel happened over eight years ago, so I am quite a bit behind. Though I do remember loving California Screamin' in high school, and I loved riding during my most recent trip. That remained a constant.

Gotta have Mickey Mouse Ice Cream at Disney!
Another upgrade to Paradise Pier was the ride Toy Story Mania! Don some 3D glasses and adventure into different rooms aiming the spring-action launcher at various moving targets! It reminded me of an upgraded version of Buzz Lightyear Astro Blasters.

Ready for some Toy Story Mania!
I was the lowest scoring out of our group of three. My mom had the highest accuracy and she easily beat my score. But my theme park buddy* smoked both of us in terms of points. Never compete with a seasoned professional.

I'm not sure why I thought I could keep up with the seasoned pro.
Oh, and Cars Land did not exist the last time I visited! We ate lunch at Flo's Cafe. While Six Flags Magic Mountain does a very poor job of accommodating gluten free, Disney excels at it. Every restaurant has an allergen menu available, and all Cast Members we spoke to were knowledgeable about dietary restrictions. I didn't need to eat my pre-packed lunch!

Every third blink is slower in Cars Land.
In my opinion, the best change to the park was the remodeling of the Tower of Terror. Gone is the haunted hotel with that unruly elevator. In its place is a group of Guardians causing trouble with excellent background music.

The three of us standing in front of the BEST RIDE in the whole park!

Disneyland

After spending the majority of the day in California Adventure, we headed over to Disneyland to catch the Fantasmic! Night show.

Just us three goofing off.
I made sure to take salt tabs throughout the day, as we spent a good amount of time walking around outside. I also always had my water bottle. Disney makes it very convenient to find water. Between the two theme parks, a park run by Disney is much easier for me to enjoy with adrenal insufficiency than a park run by Six Flags. Overall, Disney just treats their guests better.

My mom and I with Aurora's castle and Walt and Mickey in the background.
As it began to get dark, we headed over to New Orleans Square for the Fantasmic! night show. Afterwards, we watched some fireworks, saw a bit of the electric light parade, and then road the monorail to exit the park.

Alice saw the celebration button I was wearing and congratulated me during the parade!
It was an amazing day filled with new memories and adventures. We could have definitely spent more time in either park, but I am also perfectly content with everything that we were able to experience.

I am Clearly Alive and I am Free.

My Critique of the Rides

California Adventure

Name
Amber's
Score
Notes
8/10
  • I love this roller coaster.
  • At the start of the ride, you are accelerated from 0MPH to 55MPH in 4 seconds.
  • It is also the longest loop rollercoaster in the world.
10/10
  • FAVORITE RIDE IN BOTH PARKS!
  • They revamped the Tower of Terror Ride with a new theme and a new story line.
  • The new version opened in May of 2017
5/10
  • This is the perfect place to go when you need to take a break from walking around in the sun.
  • Short line, indoors, and sitting down.
5/10
  • There are two different types of gondolas: swinging and stationary.
  • I prefer the swinging gondola, but we chose the stationary gondola for the shorter line.
  • When you're at the top, you are able to see both parks and even construction on Star Wars land.
4/10
  • I did not enjoy this ride because I felt like the sound was too loud.
9/10
  • I greatly enjoyed this ride.
  • We were able to FastPass it, however the ride broke down during our FastPass time and remained shut down for several hours.
  • Right before we were going to exit the park, we decided to check and see if it was open again. IT WAS!
7/10
  • This was another ride I enjoyed greatly.
  • I love feeling like I can fly, and this ride has you soarin' all around the world in a relaxing manner.
5/10
  • We explored this area to escape the brief rainstorm.
  • In the Beast's Library, you can determine which Disney Character you are.
  • Apparently, I'm the Evil Queen from Snow White.
7/10
  • Very fun!
  • I did have the lowest score out of our group of three.


Disneyland

Name
Amber's
Score
Notes
4/10
  • Compared to Toy Story Midway Mania!, this ride seemed outdated.
  • The calibration seemed off.
  • Once again, I had the lowest score out of our group of three.
5/10
  • I was geeking out over the history of this Monorail.
  • Originally opening in 1959, this was the first transportation system of it's kind in America.
  • Walt Disney based it off of something he saw in Germany (because America has always been behind with public transit).
5/10
  • We rode this during the fireworks show, so there was absolutely no line.
  • Though half way through, the ride paused. We listened to Madame Leota's incantation several times.
9/10
  • You cannot visit a Disney Park without riding this ride.
  • The Cast Members recognized our theme park buddy*, so they gave us a boat to ourselves.
  • I love all the costumes, the colors, and the catchy tune.
  • Disney park tradition.
5/10
  • This is another perfect place to go when you need to take a break from walking around in the sun.
  • Short line, indoors, and sitting down, just an enjoyable ride.
7/10
  • With R2D2 and C-3PO as your tour guides, what can go wrong?
  • Highly recommend this ride.

*Astute observers might recognize my theme park buddy. He is an incredibly talented voice actor, and also a family friend. Check out his YouTube channel and his Facebook page. I challenge you to see if you can watch any of his videos without smiling.

Saturday, September 2, 2017

Of Bicycles and Beaches: California, Part 2

I consider my family to be nomadic. We have lived all over the United States, and I have lived in Asia on two separate occasions. For a while, my father even worked in Canada. Every place we reside, we discover our own favorite local activities. For California, my parents discovered riding their bicycles along the beach. They wanted to show me their route.

The spoiled kitties on their heated blanket inside their box.

The Early Morning Alarm

While I love the cortisol pump, it is far from perfect. Occasionally it will alarm to notify me of a malfunction. Although the number of alarms is drastically reduced with proper site changes, it is not eliminated.

Even though I am on the cortisol pump, I keep oral Cortef at my bedside with a bottle of water. If my site goes bad, there is no way to know the amount of cortisol that I have absorbed. This is especially dangerous at night. During those very infrequent times, I immediately swallow Cortef and wait for it to kick in. I do not want to be troubleshooting my cortisol pump on a low cortisol brain. That is a recipe for disaster.

At the first alarm, my first instinct was to silence it and pretend it was a dream. Thankfully, the pump is smart enough to alarm again if the problem has not been resolved. As you can see from my alarm history, it actually took three times before my 4AM brain went, "Hmmmm. I should probably fix this."

Things that you don't want to see early in the morning.
Note: It states "insulin flow blocked" but I use Solu-Cortef.

Thankfully, this alarm did not require a full site change. I swapped out the tubing and the reservoir. We have a phrase within our cortisol pumper community: "When in doubt, change it out." We memorize this phrase and repeat it back to each other. If something seems off or wrong, we need to immediately check our pump site.

There was a blockage in the old reservoir, but I am not sure of the cause.

With the pump no longer alarming and medicine delivery resumed, I was able to sleep for a few more hours. I am thankful that my early morning adventure did not prevent me from the actual adventure planed for the day.

From Venice to Santa Monica

Venice Beach and Santa Monica pier are located about two miles apart. My parents decided to park at Venice and ride our bicycles up to Santa Monica. 

Our proposed route.

In the past, I have had several pump infusion sites fall off due to sweat while I was participating in physical activities. This was before I discovered GrifGrips. It is an adhesive patch that glues my infusion site securely onto my skin. I can be active without a fear of sweating off my pump site! For my entire bicycling adventure along the beach, I had Mr Gator firmly protecting my pump site, with my pump in a case attached to my arm. I could ride a bicycle without hindrance! We were ready for adventure!

If you purchase using this link, you can save 10% off of your first order.

We decided to walk our bikes through the street vendors of Venice. Around lunch time, we began to hunt for a spot that could provide me with gluten free food. I walked up to the host of one restaurant and asked about their gluten free selection. I was met with a long pause and eventually, ".... Uh... We have salads?" My parents and I decided to move on.

I asked the hostess at the next restaurant if they could accommodate gluten free. The hostess chuckled and said, "Of course. We can make anything on the menu gluten free." I was skeptical, but decided to try it. We quickly snagged a table at Venice Ale House.

It turned out that the hostess was accurate in her assessment of their menu, much to my delight. There were ample gluten free options. In addition, they only served one type of macaroni and cheese: gluten free. They refused to serve their gluten free patrons sub-par food. Instead, they created a gluten free mac and cheese so delicious all patrons would enjoy. I am always appreciative of this philosophy. My medical conditions should not make me a second class citizen where I am charged a premium for less appetizing food. Sadly, that mindset is far too common.

My parents and I with Santa Monica Beach in the background.

After our delicious lunch, we continued our bicycle tour. We rode past the Original Muscle Beach and continued on, locking our bikes to explore Pacific Park and the Santa Monica Pier.

My parents and I standing in front of Pacific Park on Santa Monica Pier.

Throughout the bike ride, I would swallow salt tabs at regular intervals. I also added in some oral Cortef. Although I am on the cortisol pump, I still take oral steroids when I require a bit of a bump dose during days of extra activities.

My mom and I with the ferris wheel in the background.

All in all, we biked around four miles during the heat of the day. My parents considered sitting at the beach, but when I verbalized how fatigued I was, they changed their plans and we headed home. By speaking up and saying "I had a really good day. But I am ready to go home now and rest" I set myself up for future good days.

I am Clearly Alive.

Sunday, August 27, 2017

PSA: Adrenal Insufficiency and Sunburns (AKA an ER visit for IV fluids)

If you have adrenal insufficiency, be EXTREMELY CAREFUL when you get sunburned. A sunburn is a major trauma to the largest organ of the human body, the skin. Depending on the severity of the sunburn, it is either classified as a first degree or a second degree burn. It is known to cause dehydration and to require extra cortisol. In a human with fully functional adrenal glands, cortisol levels are known to rise in order to facilitate the healing of the sunburn.

Why do I feel the need to make this public service announcement?

My mother and I made an ER trip around 9pm on Thursday, August 24th. I had gotten severely sunburned on a gulf coast beach the day before. I made the error of not reapplying sunscreen after swimming in the water (despite my mother's recommendation). I also completely missed applying sunscreen to my left hip. Immediately after leaving the beach, my skin did not appear that red.

I could tell that I was burned, but it didn't seem that bad.
Also, remove older bandaids before sun exposure.
I shall have a nice bandaid tan line on my left arm.

However, as the night progressed, my back and hip turned significantly more red. We made a trip to a local pharmacy to purchase some aloe vera gel (I only buy gel that has aloe vera as the first ingredient) and some vitamin E lotion (I absolutely love the Australian Gold scent).

Thursday morning, I honestly thought I was doing well. The sunburn on my hip hurt, but it was not unbearable. I was able to attend an art exhibit of legos, and spend some time at a mall. My mom noticed me beginning to fade around 3PM. I took additional salt tabs and cortisol. By 4:45PM, we realized that I would be unable to handle dinner in a public place. I took additional oral Cortef to sustain me until I could get where we were staying to put in a new pump site. With the new pump site ( ... when in doubt, change it out... ), I increased my pump rates to "super sick" or triple dose.

My mom and I getting a pedicure.
This was taken about 20 minutes after the salt tabs and the cortisol pump bolus.

Even with an increase in cortisol, I was not improving. After several upset stomach episodes, and one unproductive vomiting session, my mom and I decided to head to the ER around 8:30PM. I knew my cortisol coverage was more than adequate. But that is only half of the equation with adrenal insufficiency. I was severely dehydrated. I needed IV fluids.

Notice how there are two paths on this flow chart.
Original can be downloaded here.

At the ER, I was immediately triaged as a Level 2. The triage nurse stated that this was the highest she could give me. Level 1 they reserved essentially for those flown in by helicopter on the brink of death. They were able to get me back to a private room almost immediately and start IV fluids on me within the hour. However it took them over an hour to deliver Solu-Cortef due to a Level 1 patient arriving around the same time as me.

My vitals at the triage station.
Incredibly high BP for me. Inappropriately rapid HR. And 98F is a fever for my body.
My BP always spikes before a full adrenal crash. It is my body dumping adrenaline in an attempt to keep me alive.

I was not incredibly concerned with the delay of Solu-Cortef because I knew they were working as fast as they could AND I was covered with cortisol through my cortisol pump. However, this brings up a very important point: ALWAYS INJECT SOLU-CORTEF BEFORE HEADING TO THE ER. I was a Level 2 triage. I had the highest level allowed without being dead. They treated me as urgently as they physically could. I had a private room in under twenty minutes while other patients were on beds in the hallway for over five hours. But even with high level of urgency, I still had over an hour wait before receiving an injection. An injection at home buys you precious time.

IV Fluids running in my right arm. BP cuff on my left arm. Cortisol pump attached to my hospital gown. And a washcloth over my face to block out the light for my migraine.

The ER staff at this hospital was absolutely amazing. We went to Tampa General Hospital, which is the main teaching hospital associated with University of South Florida. I was visited by a med student, a resident, and an ER doctor. The med student loved the flow charts provided by Adrenal Insufficiency United and requested to take pictures of them. The resident admitted that in cases like mine, it is crucial for him to listen to the expert in the room about the rare disease. And the expert is me. The ER doctor validated our decision to seek emergency medical treatment because a sunburn is a form of extreme physical trauma that taxes the adrenal glands.

I was released six hours later, after multiple bags of saline fluids, additional Solu-Cortef, and a migraine cocktail that involved Benadryl and Reglan.

Time stamp showing what time we were leaving the ER.

This did restart the counter for my number of ER free years. Prior to this episode, my last ER visit resulted in a three day hospitalization due to food poisoning from poorly cooked chicken in Kuala Lumpur, Malaysia. That episode occurred August of 2014.

But it is ok that I had to restart that counter.

Honestly, that number was artificially inflated due to my abuser. On three separate occasions, I begged my abuser to take me to the ER for IV fluids. He refused, telling me to shut up, stop being overly dramatic, he had the situation under control, and that I was "fine." He would then leave the room, often while I was still writhing in pain and agony. Once it was because his celebratory steak dinner was getting cold. Another time, he wanted to watch a different movie with my friends from college. The third time, he did not want to drive the fifteen minutes to the closest ER during the night. 

The ER staff expressed gratitude that I escaped such a covertly physically abusive marriage.

I am free.
I am safe.

And with the support of my family, friends, and amazing emergency medical personal, I shall remain Clearly Alive.


Amber Nicole's Tips and Tricks For Sunburns

Perhaps by typing them out in a list, I'll follow my own advice.
  • SUNSCREEN: Use it. Reapply immediately after exiting the water. It is better to PREVENT a sunburn than to TREAT a sunburn.
  • ALOE: Constantly apply aloe to the burn. As soon as it dries, reapply. This facilitates healing. I prefer aloe gel that is alcohol free and with aloe juice as the first ingredient.
  • ALOE WITH LIDOCAINE: The ER doctor suggested I use this before I go to bed. The short lived numbing agent will help reduce pain enabling me to fall asleep. 
  • CORTISOL: Immediately increase cortisol dose. Severe sunburns seem to require a triple dose for me.
  • IV FLUIDS: If the sunburn is severe enough and you notice your adrenal insufficiency start to flare, seek emergency medical treatment immediately. But be sure to inject before you head off to the ER or the ED.

I do not regret my trip to the beach.

I have other tips for surviving the heat with adrenal insufficiency on both my YouTube channel and my blog, but I completely forgot to speak on sunburns.

Saturday, August 19, 2017

Of Roller Coasters and Looney Toons: California, Part 1

While I was living in Malaysia, my parents relocated to California. I was allowed to visit them once, and that was over three years ago. With my new freedom, I prioritized a trip to see them. Our agenda included Six Flags Magic Mountain, Disneyland, some time at the beach, and the ability to hug my kitties from high school.

Missy Kitty does not appreciate being picked up.
But I have been picking her up since she was a tiny kitten, so she lets me.
She and her brother will turn fourteen this Christmas.

Six Flags Magic Mountain

When I was younger, my family had season passes to Six Flags Over Texas. We would go often, and each time I would be sick for days afterwards. This was before diagnosis and before the realization of my severe salt wasting.

Two (?) years before diagnosis with Adrenal Insufficiency.
I did have the diagnosis of hypoglycemia, so I was rocking the fanny pack with snacks.
We are much better prepared now. Trips to a theme park no longer make me sick for days. I am able to tackle them with increased cortisol, lots of salt tabs, a hat, and my own food. Pro-tip: You CAN bring food into places where no outside food or water is allowed. You have a medical condition. It requires your own food.

Through security with my backpack full of food and ready for some rollercoasters!
In high school, we would drive from Arizona to California with the sole purpose of riding roller coasters for "Magic Mountain Turn Around Trips." During one of those trips, I experienced a roller coaster unlike any I had ever ridden before. It was called X.

On this visit, I was determined to see if I had just dreamed that a roller coaster had chairs that would rotate a full 360 degrees WHILE flying through the track. Did such a thing exist? It did and it had been transformed into the X2. As soon as we were inside the park, we made a beeline for it.

I prefer to not wear my cortisol pump on roller coasters. I normally supplement with extra oral medicine and unhook the pump right before I get on the roller coaster. My mom chose to be the designated holder of all items, which was greatly appreciated. Right as we were about to board X2, it broke down. I had already unhooked my pump and handed my water off to my mom.

My mom is not scared of roller coasters.
Her neck does not like the twists and turns.
I factored in enough medicine and water to ride the roller coaster. I did not factor in the repair time. It did not help that the employees could not tell me how long the roller coaster would be down for maintenance. We were the very next people in line and did not want to give up our spots. We decided to wait, but I was apprehensive. I went over to my mom to fetch my water, and it was almost empty. I had already downed my entire bottle from waiting in line. I did not have a back up bottle and there was no water in sight.

I started to get a headache. This was a bad sign, and I knew I could not last much longer. A few minutes later, the roller coaster was cleared to resume operation. It was even better than I remembered, but I could tell that I pushed myself a tad bit too far. I was quickly approaching the danger zone of adrenal insufficiency. As soon as we got off the ride, I requested that we rest. This provided a perfect opportunity to eat lunch. I took additional salt tabs, additional cortisol, and purchased a secondary liter of water. I also had the staff refill my water bottle. I was determined to not find myself in the same water-less situation ever again.

Hats and sunglasses. Absolutely critical for being in the sun.
We did a combination of roller coasters, shows, and shops. While standing in line for Green Lantern: First Flight, I made the comment on how I don't regret any roller coasters. You can stick me on any ride, and I will enjoy it.

Silly us. We thought this ride would be fun!

I realized the stupidity of my previous statement as soon as I exited Green Lantern. I regretted that ride. It was not a fun ride. I bruised badly from the back of my legs hitting the bottom of the chair, and at one point my head whacked the back of the seat. I do not recommend this roller coaster. We had to rest after this one as well.

This ride. I do not recommend this ride.
After riding Green Lantern, my roller coaster buddy* and I became more picky about which rides were worthy of waiting in a line. The reality sank in that I am no longer in high school. I am a woman, in her late twenties, with several autoimmune diseases. I cannot hop on any ride. There will be consequences if I choose a bad ride, and these consequences will most likely be very painful.

Chilling in front of the Batmobile after the Green Lantern knocked us around.
With our new pickiness (and the realization that we are not as young as we once were), we did not want to waste any more time in lines of rides that were not worth it. We asked a park worker for his favorite ride. He recommended Tatsu.

One of our favorite rides.
My roller coaster buddy and I decided to end our roller coaster riding adventures with Tatsu. It was perfect. It was comfortable, I had no bruises, and I was able to fly! We started the day with an unbelievable roller coaster, why not end the day with another unbelievable roller coaster? We were content. To perfectly wrap up our day, headed over to the carousel.

If you do not enjoy riding on the carousel, you are not a joyful human.
To the outside world, my love of roller coasters seems counter intuitive. I struggle with low blood pressure, so it is not uncommon for me to black out during the quick twists and turns. I salt waste, so walking around all day in the heat can be a recipe for disaster if I do not plan appropriately. I am not a fan of crowds, and yet I will spend over an hour in a line for a few minutes of thrill. Why do I do it?

Riding in the last car on Goliath.
For those few minutes, I am not Amber Nicole, who lives with several autoimmune diseases. I am not worrying about my medicine or my water or my food or my fatigue. I am Amber who can fly! I am free. I am safe. And I am Clearly Alive.

End of the day and we're all still smiling!

My Critique of the Roller Coasters

Name
Amber's
Score
Notes
6/10
  • We had no line, which was awesome.
  • One of my favorites.
  • They have this same ride at 6 Flags Over Texas
5/10
  • This is California's version of the Texas Titan.
  • There's a helix in which you experience 4.5G's. For me, it means I momentarily black out.
1/10
  • Not worth it.
  • Similar to X2 where the seats can rotate, except they rotate in an uncontrolled fashion.
  • I had bad bruises on the back of my legs.
  • I also hit the back of my head during the ride.
10/10
  • The entire ride, you're face down, flying.
  • Incredibly comfortable seats.
  • Hands down, my favorite rollercoaster in the park.
7/10
  • The cars are able to rotate a full 360 degrees in a controlled fashion.
  • Enjoyed the music during the ride.
  • Due to the complex nature, X2 has a tendency to go down for maintenance. It would score higher if not for its unreliability.

*Astute observers might recognize my roller coaster buddy. He is an incredibly talented voice actor, and also a family friend. Check out his YouTube channel and his Facebook page. I challenge you to see if you can watch any of his videos without smiling.

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!

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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! 
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