Let me start out by stating that 2013 will go down as one of the most challenging years in terms of medical drama. It competes with 2005, and that was the year that I was officially labeled with Adrenal Insufficiency! Although I did receive some amazing blessings this past year, I never ever want to experience another year like it. Below is a month by month recap.
I spent New Years Day hovering around an Adrenal Crisis. I referenced it when I discussed The Beast, however I never elaborated further because it was such a blur. I did discover that you get faster service in Urgent Care when you collapse in the waiting room. I scared those nurses! Looking back, New Years day should have been a harbinger of how the rest of 2013 played out.
|Let's start out the New Year in Urgent Care. Photo by iStock.|
In February, I placed third in a 5 mile race for my age group! A week later, I ran a 15k race with under 10 minute miles! However, all of the physical exertion started to take a toll on my overall health. Considering the Spoon Theory, I cannot believe I only took 5 mg extra HC for that 15k race! I was still suffering from what we refer to as "Steroid Guilt." Because society is conditioned that steroids are bad, many of us with Adrenal Insufficiency will risk hospitalization and possibly death so we can be on the lowest dose possible. Don't worry, 2013 has taught me the dangers of not taking enough life sustaining steroids.
|After my 5 mile race with my sweet awesome snow globe award.|
In March, I ran a half marathon! Again, I put up a sweet awesome time of 2:08:33. But I should have also increased my HC dose. Immediately after the race, I was hovering around that dangerously low coritsol zone. Addison's Disease is a rare disease, and there isn't formal research done on dosing for distance running. Patients are told to increase the dose, but are not told HOW to increase dosages to mimic the natural body. Much of it is trial and error. Through all the errors of 2013, it's looking like 2014 will be a much safer year for me!
|Nothing like a selfie photo in a dirty mirror.|
I almost died April. It's frankly a miracle I didn't given the lack of medical training of the endocrinologist, the primary care physician, the EMT's, and the ER. My Nightmare was so traumatic that it took several months for everything to sink in. Actually, I'm not sure it will ever sink in. I still occasionally have nightmares and flashbacks that fit the diagnosis for PTSD. Any time I hear an ambulance siren in the distance, my first thought is "They could kill me." Through counseling and writing, my PTSD symptoms have lessoned. However, April 19 2013 will be remembered as the scariest day in my entire life. It also marked a huge turning point for 2013.
|I tried to look for a picture of an ambulance to put here, but I couldn't.|
Turns out even looking at ambulances still makes me have flashbacks from the nightmare.
Instead, I'll show the picture of "Give drugs or watch die."
I did not know how long it would take me to "bounce back" from that Adrenal Crisis. It took me a lot longer than I expected which left me rather frustrated. I only took 5mg HC extra for my 15k race in February. For this 5 mile race three months later, I took 40 mg extra. I continued taking extra after the race to try to keep ahead of the impending crisis but it wasn't working. My mom left Seattle and moved in with me due to my inability to function on my own. I was confined to my apartment and under the care of my mom.
|Nothing like an IV in your hand to turn it green from the bruise! This was after the ER trip on May 5.|
My mom and I had to figure out WHY I almost died in April. An Adrenal Crisis never happens without something to trigger it, but we had absolutely no idea as to what triggered this. I also had to find a new endo, after Endo 3 completely mismanaged my case. We began to assemble a team of doctors to help piece together my puzzle. One of those doctors informed me that I could not run for quite some time. I went from a half marathon in March to not being able to move from my couch in June.
|When you cannot run, walk. And be thankful for every blessing you find along the way.|
After a solid two months of living with me, my mom moved out due to the night and day improvement she witnessed. I was able to take a trip to Chicago at the end of the month to visit my Running Buddy. However, I became sick due to my undiagnosed Gluten Intolerance which was highlighted during a meal of Chicago deep dish pizza. When I first arrived in Chicago, we almost had to make an ER run.
|The Running Buddy and I in Chicago! Note: His shirt is from our 5 mile race in May.|
August 1st marked two years after my dear friend Kara lost her battle with Leukemia. As I reflected on my own health struggles, I remembered Kara's strength. She was strong because she never, ever gave up her fight, even though at times she was afraid. It was that strength that I wanted to emulate when walking through my own health struggles. Then on August 20th, I was able to see one of the top Endocrinologists in the US. It had taken me over four months to schedule an appointment with her.
|A picture with Kara from 2010.|
Fun fact: That's actually my Running Buddy in the background crashing the photo.
After five months of solid doctors appointments, my mom and I were able to piece together what triggered my Nightmare! We had some answers! One of the answers involved me going Gluten Free, which allowed me to link up with an amazing woman. Check out her facebook page. My goal is to be Clearly Alive, her goal is to Purely Thrive. They match up nicely.
|Weight loss and Addison's Disease are never a good combination.|
July 2011. Aug 2011. March 2012. May 2012.
I got engaged to my Running Buddy! And we would have never started our relationship if not for My Nightmare. As a whole, 2013 was a medical nightmare. October, on the other hand, was pretty awesome.
|Wedding set for March 1st, 2014.|
My blog received 10,000 visitors before hitting the one year anniversary in November. I realize that I am just a single voice online, but I hope that my single voice of fighting to be Clearly Alive despite my circumstances will continue to encourage others.
|I'll never stop fighting to be Clearly Alive.|
Thankfully, I am able to wrap up 2013 with some answers. I saw a total of fifteen different specialists but I lost count of the number of doctors appointments. I had two cat scans, an endoscopy, a couple of skin biopsies, several heart tests, and I forgotten what else in order to gather data and make conclusions. I had a few doctors that wanted to throw doubt on my diagnosis. I got into many arguments with Endo 4 and a rheumatologist who just did not like me. They incorrectly told me I was misdiagnosed and had Adrenal Insufficiency due to improper use of steroids. Recently, I had to get a note from Endo 6 for work. One of the top Endocrinologists begins her letter by stating that, "Amber is under my care for treatment of Primary Adrenal Insufficiency."
|Obligatory cat photo.|
That's right y'all. I have closure through my answers. I have Addison's Disease, POTS, a B12 deficiency, and Gluten Intolerance. However, that list of labels is not the focus of my life. It is not the important part.
The important part is the fact that I will never ever give up my fight to be Clearly Alive.
Labels: Random Reflections, Recap