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! 
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 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."

We were 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: We 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 poor 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.

Sunday, January 22, 2017

One Year in Nevada

I use an app on my phone called timehop. I link together all my social media accounts, and every morning it reminds me of memories. This past week, it notified me that it's been one year since we moved to Nevada.

My facebook status from when my husband arrived.

The move started out with my mom meeting me in Sacramento to drive over the pass together.

The Olive Thief wondering where I have taken him.

A few days later, my husband and his good friend arrived from Texas with the rest of our belongings.

To our friends in Texas that helped us pack up, thank you.
Thank you. Thank you. Thank you. Thank you.

We welcomed many friends and family to our new home this first year. Some were able to stay for only a meal while others were able to stay for the night. All in all, we had over twenty visitors. This does not include the two board game nights that we hosted for our FRC Robotics Team and any occasional four legged friends.

My grandfather became friends with Miss Charlotte.

In August, we closed on our house and began a major home remodel. We are currently knee deep in the remodel, which is a combination of my husband's DIY efforts and a professional contractor.

Our house is a mess of boxes, covered furniture, construction tools, and three cats running around like crazy. The dog mostly sleeps.

It's an odd feeling as I walk through our vacated apartment less than a year from when I first picked up the keys. Our first year in Nevada was a tumultuous one. Our hope is to remain here for a while. I am perfectly content living the Clearly Alive lifestyle with less crazy adventures.

Our friends in Nevada are also amazing.
To those who helped us move and clean, thank you. Thank you. Thank you. Thank you.

Sunday, January 15, 2017

ICYMI, AFAA: On Medical Alert Bracelets

In case you missed it, Action for Adrenal Awareness released January's video on YouTube. This month, I spoke on the importance of wearing a medical alert bracelet.



On Why You Need One:

Y'all, view this as your voice when you don't have one. A medical alert bracelet is nothing to be ashamed of, and it can save your life. As we start to crash, it is imperative that people know what they are dealing with.

We require a 100 mg solu-cortef injection immediately.
We should be clearly labeled to let others know.

These are some of the alerts I have used over the years.

On What to Say:

It is important to avoid the specific diseases such as "Addison's" or "CAH" or "Secondary Adrenal Insufficiency" because that can confuse the medical community. What's important is that they know your adrenal glands are dead (adrenal insufficiency) and that you need steroids in an emergency (steroid dependent).

Adrenal Insufficiency United recommends the following phrasing:

Adrenal Insufficiency:
Steroid Dependent

The National Adrenal Disease Foundation recommends the following phrasing:


When I crashed in a medical office back in 2013, both the ER nurse and the EMT admitted that they did not understand my medical alert bracelet. At the time it read "Addison's Disease. Steroid Dependent." I rewrote my bracelet to remove any possibility of another misunderstanding.

Give Drugs or Watch Die.
I added the poignant phrase of "Give Drugs or Watch Die." When I start to crash, people have two options. They can either give me my emergency injection of solu-cortef or they can watch my body go into shock as I come closer and closer to death.

Very simple flow chart.

My current bracelet reads:

FIRST NAME LAST NAME / YYYY
ADRENAL INSUFFICIENCY
** STEROID DEPENDENT **
100MG SOLU-CORTEF
INJECTION ON PERSON
GIVE DRUGS OR WATCH DIE!

Feel free to copy. I use my bracelet as a conversation starter. It helps people realize the seriousness of our disease.

On Where to Purchase:


I'm on a RoadID kick.
I have used a great number of companies through the years. Heck, I started wearing my first medical alert bracelet in elementary school. My current favorite is RoadID. I own several of them, all different styles. I have also ordered from N-Style and the original Medic Alert Foundation. Here are a few others

It doesn't matter if it's a dog tag, a necklace, a bracelet, or even a shoe tag. The important thing is that you WEAR IT and don't take it off. Find something that works for you.

In Conclusion:

Y'all have no excuse as to why you do not have one. If money is an issue, CONTACT US! If you are ashamed or embarrassed, GET OVER IT! This can be the difference between your life or your death.

Give Drugs. Or Watch Die.
You choose.
I am passionate about this topic. I'm tired of reading stories about serious injuries and deaths due to people in our community not receiving their emergency injection in time.

Let's change the stories.
Let us work together so that we can remain Clearly Alive.

I also want to hear from y'all. What's your favorite medical alert bracelet? What does your bracelet say? Has it ever been used in an emergency? Please comment! And please share this information.

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.

Sunday, January 8, 2017

The House: The Laundry Room, Phase One

Now that we have three cats, we needed a dedicated space for them. We could turn the laundry room into such a space with the installation of a door.

We weren't a huge fan of the arch.

The Goals:

That closet is coming down!
  • Remove the arch and replace it with a door.
  • Repaint.
  • Remove door into the hall bathroom and replace it with drywall.
  • Remove small closet.

The Timeline:

I'm modeling the fact that the closet is coming down!
Also, I just realized how hyper-mobile my hands are.

We started this room in December.
I was able to move the kitties down on January 5th, 2017.

With the move of the kitties, the Laundry Room, Phase One is considered complete.

The Work in Progress:

Arch has been removed!

Oh look, a door. It fits.

Originally, this was going to be a half wall. Then we realized that black pipe could not be moved. We adjusted our plans.

Removing the cabinets.

We needed to move the furnace intake vent to the hallway due to the installation of the door.

Texturing walls is messy.

New color left. Old color right.

My husband did such a good job with the drywall and texture. Though I did pick the paint color.

Mig, slightly freaked out in my car.
Poor kitty does not appreciate moving. Hopefully, this shall be his last move for a long time.

The Results:

Kitties have their own room.

We have more plans for this room. But Phase Two shall be completed at a later time. The important part is the kitties are now at the house. The puppy is extremely ecstatic that her entire pack has been reunited.

Saturday, December 31, 2016

2016, A Recap

2016 started out with so many unknowns. We knew we were moving to Nevada, but beyond that we weren't quite sure what the future held. 

Although it was unbelievably terrifying to walk away from everything we had established in Texas, I am thankful we did. We found an amazing endocrinologist who was not scared of my cortisol pump. We found a PCP who is willing to learn about Adrenal Insufficiency so that he can better treat me with the "normal" sickness. We are networked with the local hospitals, and I am able to call both ER doctors and EMT's friends. I need not fear this Biggest Little City killing me. I can finally feel safe.

But enough with the introduction! Let's move on to the month by month recap!

January

Marvin, my Matrix, wasn't too badly damaged.
Her car definitely suffered more.
Insurance ruled that she was completely at fault.

One of our biggest motivations for leaving Dallas was to escape bad drivers. All doubts of moving were erased when I got into a car accident driving to my last day of work. A lady in an SUV drove her car into mine as we were coming off of a red light. I am very thankful to say I avoided the hospital, but oh did I have to increase my cortisol! I was amazed at how much the car accident shocked my system. I was showing signs of low cortisol hours and even days after the event. Dallas, thank you for your fitting good-bye. You can keep your crazy drivers!

February

We are slowly turning our new place into a home.
My Olive Thief loves the new floor plan. It has so many ledges for him to play on.

Our move lined up quite nicely with the FRC Build Season. Teams of high school students from all over the world are given six weeks to build a robot to acomplish a specific task for competition. Given the fact that we were unemployed engineers, my husband and I had no problem volunteering five to six days a week. When another adult mentor learned that I used to work in the semi-conductor industry, he passed my resume on to a few key people. A couple interviews later, I landed a job! Although I was unsure of what I would be doing before I moved to Nevada, I was pretty confident something would fall into place. It did, with perfect timing.

March

Echo, my husband and I on a dock at Lake Tahoe.

March was quite the busy month! We started out celebrating our second wedding anniversary at the Grand Canyon with a brief pit stop to meet up with another Addy friend. Shortly after we returned, I began my new job. We also adopted a dog named Echo! My husband visited the local shelter where a sweet "retriever mix" captured his heart with her meek whimper. In between all the activities, we decided to throw in a random 5k. To finish the month, my husband and I met up with some friends from college for a spontaneous weekend at Lake Tahoe.

April

Photographic proof that Mig and Echo get along!

April started out with a trip to the Las Vegas Convention Center for the FRC robotics competition. It was a little bit challenging to guess how much cortisol multiple days of full activity would require. The second day of competition, I had to hide in the hotel room all morning until my low cortisol migraine subsided. I was nervous that the high school students would view me as diseased and unreliable. When I finally was well enough to show up to the convention center, none of my fears were realized. They were happy to see me feeling better. Later in the month, my husband started his new engineering job. April also marked the official kick off of Action for Adrenal Awareness, where four of us hosted a live broadcast to raise awareness about adrenal diseases. Check it out here. I start speaking at around minute 46.

May

First time back on the bike in SEVEN years.
Also, we missed the "easy trail."

For Mother's day, my parents visited us. While I greatly enjoyed the time spent with them, I did end up getting sick, requiring a 100 mg emergency injection. A few weeks later, we hosted my husband's parents for dinner. We took great joy in being able to show our parents the life that we are building together in Nevada. Towards the end of the month, we took the dirt bikes out for a spin. It was my first time back on dirt bike trails in seven years.

June

After my husband's Tough Mudder. They leveled up their headbands!

During the month of June, we had a friend from Texas fly out to complete a Tough Mudder with my husband. I enjoyed watching them, but the altitude mixed with dehydration equated to another emergency injection later that night. We also BOUGHT A HOUSE! We were not expecting to put an offer on the very first house we saw, but we immediately fell in love with it. We submitted our official offer on June 28th for an August 12th closing.

July

After the 4th of July Fireworks show, we went to Walmart for a picture (and Gatorade).
Fun Fact: These are the faces behind the Theoretical Steroid Curve Plotter.
That tool would not exist without their help.

I took a spontaneous trip back to Texas for Independence day while my husband did a solo backpacking trip with the dog. To celebrate my husband's birthday, we attended a Philip Phillips concert, in which we realized we are now way too old to stay up late. July was also filled with multiple home inspections. I am incredibly grateful for both our Lender and our Real Estate agent. They worked together and guided us through our first home buying experience to make the process as stress free as possible. This was quite important, given my Adrenal Insufficiency.

August

Echo guarding our tent during a camping trip in Northern California.

August started with a trip to Austin, TX for an engineering conference. Later in the month, we took the dog and the dirt bikes and met up with friends for camping in Northern California. August 12th came and we closed on the house without issue. To celebrate, we welcomed in two additional adult cats to our Clearly Alive family. If you had warned me in January that our fur-ball household was to increase from one to four, I would not have believed you.

September

Family vacation in Pismo Beach, CA.
Also, the first time I got to see my brother and sister-in-law since their wedding in August of 2015!

My parents and my aunt and uncle visited as we showed off our new house over Labor Day weekend. On September 8th, my husband was in a minor car accident with no injures. A lady ran the red light, hitting him. In a competition between a Mercedes and a Ford F150 from the late 90's (aka - a steel tank), the truck is going to win. A few days after the accident, we joined my family in California to celebrate my parents' 30th wedding anniversary. We left from there and immediately embarked on separate adventures. I had the pleasure of attending my former college roommate's wedding in northern New Mexico while my husband went to Wales for a business trip. 

When we returned home, we realized that our dirt bikes had been stolen off of our new property. Because they were not properly insured, all we got was "Too bad, you get nothing. And by the way, your homeowners insurance is canceled. Find a new policy provider." September can accurately be described as the month of both extreme highs and extreme lows.

October

The puppy exploring the crystal blue water of Lake Tahoe.

Thankful, October slowed down a tad. We purchased our dining room table and immediately christened it by carving pumpkins to celebrate my birthday. Friends from Texas visited and we had the pleasure of showing them the beautiful blue lake of Tahoe. We continued our work on the house, making it our own. We finished up the month by greeting trick or treaters with Wonder Woman and Santa Claus.

November

To honor our Assyrian heritage, I drew a picture of the Lamassu.
I started this in January and then gave it to my brother for Christmas, celebrated over Thanksgiving.

At the beginning of November, my grandparents visited from Florida. I loved being able to spend time with them and show off our house. My grandfather used his handy-man experience to teach my husband some things (like how to get electricity back in the kitchen when an obscure GFID outlet trips), and my grandmother fed us an amazing home cooked meal on our dining room table. I also participated in a project by a local photographer called "Beauty in the Desert" to celebrate my blog's fourth birthday.

Two of my husband's friends from college visited. I ventured to California for an Engineering certification exam, an Ikea adventure, meet up with college friends, and the ability to greet a fellow Addie sister, Debby. We finished up November with a Thanksgiving / Christmas celebration with my family in Arizona. I had a disease flare Thanksgiving afternoon and ended up requiring twelve hours of sleep, several zofran, and almost a triple dose of my solu-cortef the next day to stabilize. Got to love the holidays with autoimmune disease unpredictability.

December

My husband and I at his holiday work party.

My husband did such a good job in Wales the first time that his company sent him again at the beginning of December. He returned to America just in time for us to attend his holiday work party. My parents also drove up to visit us for Christmas. I was horribly embarrassed as I had them visit our apartment. The kitchen was growing things, the cat litter desperately needed to be scooped; I could not attempt to hide the chaos.

A loss of a job, an out of state move, the leaving of in person support networks, the start of a new job, the purchase of a house, the addition of three fur-balls to the family - these are a lot of changes for people with working adrenal glands! They left me to where I was just barely treading water, just barely staying afloat. Many times this year, it felt like I was absolutely drowning.

I broke down crying as my dad cleaned my kitchen and took care of the cats. I felt like an utterly incompetent adult, unable to handle just basic life. 2016 was a hard year, not necessarily because of hospitalizations or disease flares. It was just hard.

But you know what?

I'm still Alive. We had zero hospitalizations or ER visits. We have a beautiful house. We have a zoo of fur-balls that offer their unconditional love. We both have stable jobs. We are beginning to establish friendships. We are figuring out our new routine.

May 2017 bring stability!

Here are the recaps for 2015, 2014, and 2013.