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! I never ever want to experience another year like it.
Below is my 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.
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.
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!
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 due to 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 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.
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.
After a solid two months of living with me, my mom moved out due to the night and day improvement she witnessed. To celebrate, I had two friends from college fly out and visit me! I am so thankful for those that have stood by my side through everything.
On August 20th, I was able to see one of the top Endocrinologists in the US at a local research hospital. It had taken me over four months to schedule an appointment with her. I also switched to a new role at my job. Apparently, I had such a prized cubicle location that my coworker didn’t even wait until I moved out before he began moving his stuff in!
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 I will admit was quite the lifestyle change. But it made such an drastic improvement in my life that I stick to the strict diet.
I had the ability to do some traveling in October, which included meeting up with some friends in St Louis. From being completely house bound in May and June, the ability to get out and see people who loved me was quite welcomed.
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 also had an opportunity to attend a robots competition with my father. While there, we ran into one of my favorite professors from college.
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.”
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.