Saturday, July 30, 2016

ICYMI: On Travel

In case you missed it, Action for Adrenal Awareness released July's videos on YouTube. The topic this month was on various aspects of travel. We pulled from all of our combined experiences to share some of our key tips and tricks. Below are our four videos:

Kim: On Road Trips and Car Rides

Kim was considered our go to expert for road trips and car rides. Due to where she lives, she travels frequently by car to attend all specialist doctor appointments and to visit relatives. Her key takeaways can be applied to every type of travel and are summed up below:
  1. Know your limits.
  2. Be prepared.
She also has the following tips and tricks:
  • On What to Bring:
    • She travels with her body pillow, and likes to pack a blanket as well.
    • She also carries with her important medical documents that are up to date.
    • Meds:
      • Bring 3x the amount of steroids you would normally need.
      • She'll separate out the meds she needs for that particular day and place them in an easily accessible container in her purse.
      • Before you leave, check and make sure that your emergency injection has not expired.
      • Don't forget anti-nausea medicine. Peppermints can work well.
    • Food:
      • Bring it!
      • Especially if on a restricted diet, be sure to pack safe food for both the trip and the destination. Your destination might not always be able to accommodate your special needs.
    • Fluids:
      • Hydrate. Hydrate. Hydrate.
      • It's sometimes good to add in an electrolyte drink such as Gatorade or Powerade. Just be mindful of the potassium.
      • Some of us are extremely sensitive to small changes in the water. If you fall into this category, bring bottled water.
        • Kim has been adversely effected by this, causing her to triple her HC dose and took her several weeks to recover.
        • For me, we finally tracked down that it was the Malaysian Airline's water that kept causing me to almost crisis multiple times while abroad.
  • On How to be more comfortable:
    • She rests her feet up on the dashboard. 
      • Turns out, both Debby and I do this as well!
    • Keep that AC on. If it's not too hot outside, roll down the windows.
      • This is a big deal for me. I get nauseated much quicker if there is no air circulation in a vehicle.
    • Factor in regular rest and stretch breaks.
      • For shorter trips, Kim stops every 1.5 hours.
      • For longer trips, she'll get out and walk around at least once an hour.
      • For even longer trips, she breaks them up into multiple days, with an overnight stay in between.
      • If you push it too far, you may be doomed before you ever reach your destination.
    • Do not be afraid to up-dose! 

Kim encourages us to do whatever we need to do in order to make it a good trip for us.

Debby: On Camping and Visiting Remote Locations

We also have a resident camping expert on our team! Once a year, Debby goes on her week long solo camping trip with just her dog. She does not let her disease stop her from enjoying the great outdoors, but she does take specific steps in order to be prepared. She stressed the importance of carrying the following three items with you at all times:
  1. Your medical alert bracelet.
  2. Your emergency injection kit.
  3. Extra medicine.
Carry those with you whether you're camping in a remote location, or running a quick errand. Especially that medical alert bracelet. Consider it a part of you now that you never take off. 

Below are a few more tips and tricks:
  • On Meds:
    • Debby's Emergency Injection Kit contains
    • She carries extra medicine in a little pouch with clearly labeled individual boxes
      • Zofran
      • HC
      • Ibuprofen
      • Pink Himalian Salt Crystals
      • etc.
  • On Location:
    • When you arrive at the camp ground, alert the ranger / host / near by campers of your medical condtion.
    • Leave emergency contact numbers. 
    • If camping alone, you can always ask the rangers to check in on you. They don't mind.
    • When go to mountains, make sure to get weather report. This helps you know how to prepare.
    • Cell service might not be always available.
      • Have a backup plan: mechanical compass, physical maps, letting people know where you are going and approximately what time you expect to return.
  • On Hydration:
    • You will dehydrate a lot quicker. 
    • Make sure you always have fresh clean water. 
      • Debby likes to carry a water filtration system
      • She'll also add 3-4 pink salt crystals to water bottle. It ups the salt without a noticeable taste.
    • If taking fludrocortisone, you may require extra. 
      • Chat with your doctor and create a plan before you leave.
  • If you get hurt:
    • Immediately take more HC.
    • Do not trust your brain trying to tell you that you are ok especially if you are not.
    • Sleepiness, disorientation, nausea are all symptoms that you need more HC.
    • If it's not safe to move, just stay put. You should have let people know where you were going so that they can find you.
Debby encourages us to listen to our body and understand it's need for cortisol. Learn our limitations. Once we figure those out, we can enjoy so much. Camping in remote locations does not have to be off limits just because we live with Adrenal Insufficiency.

But if camping seems much too difficult, she reminds us that we can just go enjoy outside and enjoy life.

Amber Nicole: On Airports and Airplanes

I actually filmed my video while waiting to catch a red eye flight for a spontaneous trip back to Texas to celebrate Independence Day. Nothing like filming a video about airplanes and airports while waiting at an airport, right? Here are my main points:
  1. Purposefully factor in rest time.
  2. Watch for dehydration.
Some additional notes:
  • On Hydration:
    • Be very mindful of dehydration and very pro-active for proper hydration. 
    • Feel free to cary an empty water bottle through security.
  • On Navigating Airports:
    • Arrive at airports ridiculously early. It's more fun to people watch than to rush.
    • Wheelchair assistance is available, and there is absolutely no shame in utilizing it.
    • Make sure you are wearing your medical alert bracelet. 
  • On the Plane:
    • If you are feeling apprehensive, speak with the flight attendant. They are there to help you.
    • On longer flights, wear compression socks and make sure you get up to walk around.
    • Keep all important medicine with you at all times and within reach. 
    • You are also allowed to carry on unlimited amounts of critical medicine.
  • On the Timing of Medicine:
    • Do not be afraid to bump up your steroid dose, especially if you find yourself growing increasingly confused and overwhelmed.
    • For significant time zone jumps (6+ hours), double your hydrocortisone. Take it in both time zones to ensure no gap in steroid coverage.
    • For shorter time zone jumps (1-2 hours), it is better to take your hydrocortisone early than it is to take it late.
    • For long traveling days involving multiple layovers and messed up sleep schedules, do not be afraid to take a bump dose of hydrocortisone every 30-90 minutes.
  • And perhaps most importantly, factor in rest time for when you first arrive at your destination.
This tips and tricks were able to serve Wendy well during her recent trip to Thailand.

Nichole: On General Travel and Packing of Medicine

Nichole's video covered travel in general along withe the packing of medicine. She reminds us that travel does not need to be by airplanes, or long car rides, or camping in remote locations to be considered travel.

Her summary is valid for every type of travel:
  1. Pack your meds.
  2. Pack more than you think you need.
  3. Verify that your kit actually contains everything that you think it does.
Below are some additional notes from her video:
  • In her Handbag: 
    • Important Letters:
    • Important Medication:
      • HC and emergency injection kit
      • If medication requires refrigeration, she recommends a Frio Wallet off of Amazon.
    • Glucose Testing Kit
      • So often, hypoglycemia is a common factor with Adrenal Insufficiency
      • It might be low blood sugar instead of low cortisol.
  • Regarding Preparidness:
    • Go check your kit. Now. Does it contain everything?
    • Are any of the medications expired?
    • Pack way more than you think you'll need.
      • Good rule of thumb: 3x the amount.
      • You do not want to have to hunt down a pharmacy on top of feeling unwell.
  • When Traveling Internationally:
    • Check all vaccines with your doctors. If they recommend some, get them.
    • Make sure you have important documents
      • Passports
      • EU health card (if applicable)
    • Be mindful of the local language. Translate important documents beforehand.
      • I did this when I lived in Korea, Malaysia, and traveled to Thailand.
    • Look into travel insurance.
  • General Notes:
    • Always, always, always carry additional medicine (The AFAA team keeps stressing this point because it's very important).
    • Do not be afraid to ask for help
    • Be clearly labeled.
      • Medical alert bracelet?
      • Nichole has a label on her keys.
      • I have a label on my water bottle.

After watching Nichole's video, I went and checked all of my different emergency packs and bags. I realized that all of my Zofran had expired and I was almost out of salt tabs. It felt good to know that my kits are up to date and that if an emergency happens, I am prepared.

I challenge y'all to go check your kits now and report back your findings. Did you need to update anything?

Did we forget anything? Are there any tricks that you would like to add? Please share them in the comments! 

And as always, if there are any specific topics that you would like us to cover, suggest them here.

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Saturday, July 23, 2016

2015 Plano Balloon Festival Half Marathon

The 2015 Plano Balloon Festival half marathon was my husband's first half marathon and my third. However, this race was my first half marathon after my 2013 nightmare crisis, and my first after obtaining my cortisol pump. We had a very simple goal. We wanted to finish the race and not require any emergency medical intervention. Our race time was not our focus.

Hot Air Balloons from the night before.
Photo from September 2015.
Like most runners, I did not train properly. Training for this half marathon consisted of playing weekly indoor soccer games, climbing a ridiculous amount of stairs at work, and a random 10k run in Waco about a month before.

I had planned on at least one long run to practice with my cortisol pump. But when that Saturday came around, I woke up vomiting. A run was completely out of the question. My husband and I were very thankful that we didn't need to make a run to the hospital and could self manage at home.

September 20th, 2015 finally arrived. I was incredibly nervous. My aunt and uncle volunteered to act as our chauffeur so that we could avoid race day parking. I had also convinced a fellow Adrenal Insufficient friend to drive down and complete the race with us.

My aunt made awesome signs for us.
Photo from September 2015.
Naturally, I was rocking my "Steroid Dependent" race shirt. A few miles into the race, a woman approached me and asked me "Are you wearing that shirt for you or your child?"

"Me. I have Adrenal Insufficiency."

"Wow. That is so awesome. Keep it up!"

I chuckled at the knowledge that the gal running beside me also had Adrenal Insufficiency, and she has completed several full marathons!

Around mile ten, my infusion pump site fell off due to a combination of sweat and Texas humidity. I forced myself to remain calm. I had an ample supply of back up oral steroids and I was surrounded by people who could take care of me if things got worse. We were also approaching a golf cart that had a few EMT's and a police officer. The golf cart provided an excellent table for me to organize my meds and regroup.

"Whacha got there? Weed?" an EMT asked, jokingly.

"Nah! Even better! Steroids! But don't worry, I'm clearly labeled." I responded as I pointed to the back of my shirt. He chuckled as we continued on towards that finish line.

I was so excited to cross that finish line. Our time was around three hours, so much slower than my PR. But that was ok!

I did start to get testy and illogically irate shortly after we finished. My friend recognized my symptoms and sternly told me to take more medicine. I under-dosed myself for the race but I was able to correct before I faded too far.

We earned those medals!
Photo from September 2015.
To summarize, this was my first half marathon with my cortisol pump and it actually failed me. Through that failure, I learned several lessons that I can apply to my next long distance race. I was already in the habit of carrying back up oral steroids, but I had forgotten spare pump supplies. I also did not start increasing my HC early enough. For the majority of the race, I was playing the ever fun game of "cortisol catch-up." Also, climbing stairs does not equate to adequate half marathon training.

But this race did mark a major victory. I had to get over the mental hurdle from running a half marathon incredibly well (under 10 minute miles!) to have everything ripped out from under me.

We did it. We earned this medal.
Photo from September 2015.
Will I ever return to my fast race times from before the Nightmare of 2013? I'm not sure. To be honest with y'all, it wasn't like I was suddenly fast. The training to complete a half marathon in sub-10 minute miles in 2013 actually started in 2010 when I began running with my "running buddy." I was working towards that goal for over three years.

I would love to reach that point again, but I need to be kind to myself. I need to slowly build up endurance. I need to not grow frustrated as I compare my current state to my past victories.

Photo from September 2015.
I am still Clearly Alive.

Photo from September 2015.
And that alone is a victory worth celebrating.

Saturday, July 16, 2016

The Badass Brazos 10K

The picture of the finishers medal popped up on my facebook newsfeed one day. From the moment I saw it, I knew I had to have it.

I spontaneously signed up for the Badass Brazos half marathon in Waco, TX for August of 2015. We already had a half marathon on the calendar for September 2015, but I wanted that particular giant medal to proclaim my awesomeness.

Shortly after I hit submit on the registration form, I realized the foolishness of my actions. I might think that my husband and I are entitled to that medal, but there was no way we would be prepared for a half marathon by August in hilly and humid Waco, Texas. I frantically called the race director and begged to drop down to a shorter distance. They couldn't refund any money, but they could change our distance. This was the most expensive 10k race I have ever run, but I'd rather over pay for a distance than pay for a hospital visit. There was no shame in admitting that we were not ready for a half marathon.

To alleviate traveling stress, my husband and I decided that we would stay the night with some dear college friends instead of attempting a day trip. I had been to Waco before, but I always forget how badly I'm allergic to the town. Pollen count for grass was off the charts high that weekend. This translated into a perpetual headache regardless of the allergy medicine I consumed. Dear friends, I love your place but I hate your town. Grass and Amber do not mix.

Yay for friends!
Photo from August 2015.
During packet pick-up, the gal providing us with our race bibs looked strangely familiar. It took a while for me to place where I had met her before, but it was at a robotics competition back in Dallas swapping stories over some of our fun adventures. Devynn, if you're reading this, you're awesome. Stay awesome.

I am not going to run the half! But the 10k? I think we can handle the 10k because #I'MABADASS
Photo from August 2015.
The race route was surprisingly very pleasant. Normally, I despise the "out and back" type races, but this one had us running out completely up hill, turning around, and then running back completely downhill. Dear race directors, thank you for that gift. I sprinted across that finish line and earned my obnoxious medal.

So proud. Also, Longhorns are so Texan.
Photo from August 2015.
I was both Clearly Alive and Clearly a Bad Ass.

Ask me about Life-Saving Steroids.
This 10k race marked a smaller stepping stone for our longer half marathon in September of 2015. My time was 1:12:02, which I was perfectly content with considering my severe allergies to Waco! Although I have not yet been able to match or beat my running times from my 2013 Nightmare Crisis, that is ok. I am still able to enjoy running and am very thankful for the fact that I am still Clearly Alive.