Saturday, November 19, 2016

ICYMI, AFAA: Month by Month Adrenal Insufficiency Check List

In case you missed it, Action for Adrenal Awareness released November's video on YouTube. This month, Nichole gave us a checklist to help break things down into bite-sized chunks. Below is our guide to staying on top of Adrenal Insufficiency one month at a time.



January

Plan ahead, don't overdo it with NY resolutions that are unrealistic.

February

Good time to review your diet - is it working for you? What changes could improve your Quality of life?

March

Book your Endo bloods check-up, update emergency documents 

April

Think about booking holidays and travel insurance, planning ahead is key.


May

Could you get your supplements in bulk cheaper if you order online? Which ones are you taking and why? Have your reviewed these with your pharmacist or GP?

June

Review suntan lotions, mosquito repellent, electrolyte drinks etc. before it gets hot out.

July

How are you coping with the longer days? Are you sleeping OK?

August

End of summer, time to check B12, vitamin D, iron, bone scans, etc.

September

Back to school time also means reminder to check with employer about accommodations and your work/ life balance. 

October

Time to check expiry dates on all medicines and check in with GP and/or Endo once again.

November

Take a moment before the holidays to be thankful for how well you are managing your condition.December - Before the crazy of seeing all the family, plan and review how to talk with others about your condition.

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

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Saturday, November 12, 2016

Beauty in the Desert

I recently participated in a project for a local photographer. She is publishing a book containing stories of people finding "Beauty in the Desert." Below is her description of her project.
Everyone has fought a battle in their own lives and has gone through something hard. This is what this project is about. See the beauty in something when you didn't see it at first. Showcasing each person in their own light and beauty.... This is not just about taking a photo in the desert and slapping the words 'Beauty in the Desert' on it. It is about seeing things in a different way. Truly taking a look inside yourself and all that is around you.
Adrenal Insufficiency is my desert. It is hard to find beauty in the words "Diseased. No cure. For life." But, there IS beauty. I just have to embrace it. I used this opportunity to take formal pictures without hiding my cortisol pump and without hiding my disease. It was my way of boldly proclaiming, "Yes. I have Adrenal Insufficiency. Yes. I am different. Yes, there is beauty that comes from this desert." Below is my story interspersed with her photos.
Many people in the chronically ill community are able to look back and reminisce about a time in their life before they were "ill," "sick," or "diseased." I do not have that luxury. 
Photo by Otter Love Photography
I started showing signs of an autoimmune disease at a very young age. In early elementary school, the medical community labeled me as hypoglycemic. I wore a medical alert bracelet and was constantly singled out due to my requirement to eat food every two hours on a very regimented diet. Often, what makes you different also makes you a target. Early childhood memories are filled with incessant bullying. 
Photo by Otter Love Photography
As I entered middle school, the treatment for hypoglycemia stopped working. My health was rapidly deteriorating. I continued to drop weight, and I developed an unnatural tan. Many in the medical community did not take my plight seriously. All they saw was a young girl with "model like beauty" crippled by anxiety. Why should a teenager complain about being tan and skinny? 
At band camp my freshman year of high school, I fainted and began having seizures. That finally got a doctor's attention. With that attention, I received a new label: Primary Adrenal Insufficiency, also known as Addison's Disease. 
Photo by Otter Love Photography
In essence, my body cannot process any form of stress. Be it the physical stress of breaking a bone or running a fever, the emotional stress of a fight with a loved one or the joy of reuniting with a dear friend, the mental stress of completing a difficult test or driving in congested traffic - if I do not take pro-active measures (including a constant supply of medicine), any one of those scenarios could lead to my death
There is no cure for Addison's Disease; there is only treatment that attempts to normalize my life. 
That was a lot of information for a 15 year old to take in. 
At first, I denied it. I hid my new label. I viewed it as something that made me weaker than others.
In 2013, my disease almost killed me. After countless doctor appointments with numerous specialists, I received a handful of new medical labels, including Post Traumatic Stress Disorder (PTSD) from medical trauma that almost took my life. 
In 2014, I received a new method of treatment for my disease. 
Suddenly, my invisible illness became very visible. I began using an external pump to deliver my medicine. While my quality of life improved, my ability to blend in and appear "not diseased" decreased. This small pump that is strapped to my body at all times makes me look visibly different. 
Photo by Otter Love Photography
I have a love / hate relationship with this cortisol pump. I love that I am no longer swallowing oral medicine five times a day that was destroying my stomach. I hate that I have to be careful about the tubing, otherwise I can rip it out, causing myself pain. I love that I do not have to wait for my medicine to kick in as it is now being delivered at all times. I hate watching people cringe and react with extreme discomfort as they realize the complexity of my life.  
Photo by Otter Love Photography
But this medical device, this external artificial adrenal gland, this pump, has enabled me to live my life more fully. I cannot ignore my disease or my medical labels. I cannot wish them away. Denial will only hurt me, and that could cost me my life. 
Instead, I shall embrace my diseases, my labels. 
Photo by Otter Love Photography
I shall find beauty in this desert. 
Photo by Otter Love Photography
I shall remain Clearly Alive.
Photo by Otter Love Photography 
Madralynn, thank you for providing me an avenue to share my story.

Sunday, November 6, 2016

My Husband's Tough Mudder

On June 11th, 2016 my husband completed his third tough mudder. This was the first tough mudder that I actually attended. I wasn't sure how my anxiety would handle the crowds, excitement, and stress for the event. But I wanted to at least try to watch.

Before the race. One of our friends from Dallas flew out to join him.
The event was held outside of Tahoe at an elevation of 6,800 ft. I'm still learning about how elevation affects my adrenal insufficiency. I moved from Dallas (elevation of 430 ft) to Reno (elevation of 4,500 ft). This event was held at an elevation another 2,000 ft higher.

They started off the course with a sprint uphill.
The entire route had 3,000 feet of elevation gain.

This is considered one of the more difficult tough mudder courses. The race starts out with a steep uphill climb. I watched them start and then decided to strike up a conversation with the EMT's located nearby at the finish line. I showed them my medical alert bracelet that still reads "Give drugs or watch die." I showed them my emergency injection kit. I asked if they saw me in trouble, would they know how to treat me? They said that while they do not carry solu-cortef, they do carry solu-medrol. That drug works just as well in stopping an adrenal crisis.

I also told them that if I start to crash towards an adrenal crisis, it might look like I am a drug addict going through withdrawals. I pleaded with them to not label me as a drug addict because if I am assigned that label, I no longer am viewed as human in their eyes. I have experienced that phenomena more times than I like to remember.

They were very encouraging. They told me that they don't encounter the same issues as the larger cities. When they see someone struggling (especially with a clearly labeled medical alert bracelet), they do not instantly assume "drug addict." They enjoyed the wording on my bracelet. They appreciated the organization of my injection kit. They assured me that they could treat me in an emergency.

I purposefully went up to talk to those EMT's. My Nightmare of an adrenal crisis that happened in 2013 gave me PTSD. During that crisis, my brain latched onto the thought that all emergency medical personal can easily kill me due to their ignorance. That thought process is not helpful.

I need to replace those negative harmful thoughts with more positive ones. Any opportunity I have to go up and casually speak with EMT's, I force myself to take it. I need to hear them say "Yes. I can treat you. Yes. I will treat you. Yes. I will keep you Clearly Alive."

The guys after their ice bath, with our friend showing off his bloody elbow.
I watched my husband and friend complete a couple of the obstacles. At one point, I even jogged along side of them on the course. I met back up with them at the finish line. I enjoyed the event and was thankful I had attended.

After they finished. It took them about 4 hours to make it through the course.
Note the leveled up headbands. That's a thing with tough mudders.
During the hour drive home, I started not feeling well. My husband sternly instructed me to take more oral Cortef, but it didn't seem to make much of a difference. I had a horrible migraine that was only getting worse. I slept through the celebratory steak dinner and ended up vomiting later that night.

I felt pathetic.

I was wearing my "No Limits" shirt and yet, here I was, this diseased girl, hunched over the toilet, unable to move. This is my life?

I was tempted to make an ER run for fluids, but we decided to self-treat at home through salt pills and additional cortisol (after the ER charge nurse hung up on my husband when he asked about their triage procedures). We determined that I was hit with dehydration mixed with altitude sickness. I spent over five hours in the sun at an elevation of 6,800 ft. I did not drink nearly enough fluids, nor did I increase my steroid dose. 

I was both frustrated and discouraged. My husband encouraged me. He stated that the only mistake that happened was my miscalculation of how fast I dehydrate at altitude. I have very limited exposure to living at altitude and I am still learning how it affects me and my adrenal insufficiency.

The following day I rested. I remained on almost a triple dose of my cortisol and I missed the opportunity to say goodbye to my friend before he headed back to Texas. But he understood. He's been friends with me long enough to know that this is just another aspect of my life.

I solidified two very important lessons through this experience:
  1. I cannot underestimate the effect of altitude on my body. I am very susceptible to altitude sickness.
  2. I must be incredibly pro-active about hydration. I dehydrate rapidly due to my salt wasting.
I am still adjusting to living in this new area of the country. With this new area come new experiences and new lessons. I shall hold onto the good, and learn from the bad. I was able to support my husband in an event that he loves dearly. And for that, I am thankful.

The puppy and I recently on an adventure at Lake Tahoe.
Elevation 6,300' and I did not get sick! I'm learning!