The Sleeping Dragon
I found a paper that I wrote last fall about Addison's Disease for my Modern Monsters writing class. I have a hard time describing or admitting to this autoimmune disorder. It's hard to see myself as less than perfect and not be able to change it. And it's especially difficult to let others see this weakness, as it's not easily understood.
I panted up the stairs, dragging the last of the suitcases, and wiping the Texas heat from my brow with “riff ram bah zoo, give ‘em hell TCU” emblazoned across my purple shirt. It was August 17, 2010, and this was move-in day. I had finally graduated that May and my parents were sending me off into the real world at Texas Christian University. I could not wait to start this independent portion of my life and lounged across my newly lofted bed in anticipation of my roommate’s arrival, rushing a sorority, and the first week of classes.
Fast-forward two months. I was a habitually messy roommate, initiated Alpha Delta Pi member, and absent in every one of my classes at least once a week. I spent most of my free time sleeping at every opportunity. Concerned, my mother took a road trip to Fort Worth and had a serious talk with me. My grades were slipping, if I did not receive a 3.25 grade point average I would not be able to maintain my scholarships and would have to return home. The warning registered and I made a renewed effort in my classes, but the treks to the library seemed overpowering and when I sat down to write papers I lost all focus and concentration. The end of the semester brought my parents to pack up their failure of a real world experiment, and on December 17, 2010, my career as a Horned Frog ended.
Enter the worst Christmas ever experienced in the Arceneaux household. My parents made it very clear that they had invested all that they were going to in my education and that from now on it was up to me. I determinedly hunted down a job and tried to avoid my disappointed family. December 2010 was my rock bottom: I had gone from athletic, academic, high school homecoming court princess to college dropout. The new year came and brought with it the diagnosis of Addison’s disease.
The first few weeks in January I continually felt sluggish and began to experience severe abdominal pain, often causing me to throw up, and contracted a constant low-grade fever. My parents looked on skeptically, thinking that I was merely trying to get out of work or gain attention. My mother especially was doubtful of my apparent illness, as her career as a nurse had always been quick to destroy any “but I’m sick” ploys to get out of school in my younger years. But finally, she took me to a doctor, who also seemed stumped at the symptoms. From there we went to the emergency room, hoping the chronic vomiting was due to severe dehydration, but the IV fluids barely helped at all. At this point I was nearly delirious with illness and the next week and a half are very hazy. Early Monday morning, January 17, my mother found me in my room still vomiting and decided my state warranted a second trip to the emergency room. I could barely stand up and vaguely remember bumping down the stairs on my bottom wrapped in my blanket because I was so weak. In the car I began to panic because my vision abruptly faded. All of my other senses worked but I could not see anything. I do not think that Shari Arceneaux has ever driven so fast in her entire law-abiding life, spurred on by my shallow breathing.
Monday through Wednesday was lost in a cocktail of hallucinations and real life in my mind. After arriving at the hospital the doctor did a CT scan of my abdomen and an ultrasound of my gallbladder. From these tests, he determined that the gallbladder was a problem and scheduled surgery, but something else was clearly wrong and so he sent me to the Intensive Care Unit. And then my life changed forever.
Chronic fatigue. Muscle weakness. Loss of appetite and unintentional weight loss. Low blood pressure. Dizziness. Darkening of the skin pigmentation. Nausea. Moodiness, irritability, depression, and the inability to cope with stress. I was textbook, and the blood test only determined what the doctor already knew. My adrenal glands had failed me and I was nearly a fatal victim of Addison’s disease. My mom had saved my life.
Addison’s Disease is the slow debilitation of the adrenal glands on the kidneys. The adrenal glands secrete cortisol into the body to help the body handle everyday life. When stressful situations arise, whether they are mental, physical, or emotional, the adrenal gland automatically secretes more cortisol. Cortisol’s secondary functions are to regulate blood pressure and cardiovascular functions. Addison’s occurred when my own body attacked my adrenal glands and rendered them utterly useless. However, the changes appeared gradually--so gradually that the doctors estimate that I have been affected since the beginning of my senior year in August of 2009, and is usually only detected when the symptoms all culminate in an adrenal crisis that lands people like me in the ICU.
After getting out of the hospital I started on a pill regimen that I maintain every day to keep Addison’s at bay. I take three pills in the morning, two around 1:30 pm, and a half in the evening to act as synthetic cortisol. I also take fludrocortisone every day to balance my salt and water levels and keep a normal blood pressure. On top of that, autoimmune disorders often trigger sister diseases, like thyroid disease, so I take a pill for that every day as well. Recently my endocrinologist suggested I take two doses of DHEA, once in the morning and once at night, to ward off fatigue and keep a healthy mood.
Addison’s disease was not only a menace to my body but it affected my overall quality of life for too long. During my senior year I was a part of the cross country and track teams, but I could not run to my full potential because of the havoc that Addison’s was wreaking on my sluggish body. It was a monster to my education at TCU as the effects on my brain resulted in a 0.34 grade point average, nowhere near what I was accustomed to receiving in high school, causing me to waste an entire semester of learning and to lose my place in the class of 2014.
Addison’s cost me my memories. All of the months at TCU should have a special place in my memory, but now I cannot even tell you what happened at my sorority initiation because of the effects of Addison’s on my memory. I do not remember what I received for Christmas last year and I have to be reminded of specific events, like parents weekend, Thanksgiving, and Fall Break.
But I hate Addison’s most for stealing my relationships and making a monster out of me. The constant feeling of failure that I carried around with me before the diagnosis bred a spirit of irritation and consistent moodiness that is never conducive to good relationships. My old roommate Lindsay and I fought a lot, and even now, after knowing the reason that I was, for lack of a better word, such a bitch, we still do not communicate well. I did not have the energy to put in the effort to maintain relationships with my sorority sisters, and so now I have only talked to my big sister minimally since leaving the university. But the relationships that took the biggest hit were the ones with my family. It has always been important to me that my little brother looks up to me and I felt that I had failed as a good example to him. As for my parents, their disappointment in my performance at TCU was evident, and that was hard to deal with every day, especially because I felt powerless to fix my situation.
Having those extra few months at home gave me time to reflect on the whirlwind of drama that encompassed my life in the holiday season. I spent a few months seeing a therapist regularly, constantly wondering why Addison’s had been inflicted on me. I did not think that anything could have been better for me than having a glimmering few years at TCU—how could my life IMPROVE after leaving the university? This Thanksgiving I posted a Facebook status that summed up my thoughts on the subject:
"What? It’s thanksgiving again?! And I feel like I somehow have even more to be thankful for than last year: family who believed in me when I stopped believing in myself, friends who encourage me to be a better person and love me even when I fail, the opportunity to be back at school this semester, and you know what? I think I can even say I’m thankful for Addison’s disease. Because without that diagnosis I’d never have met some of the most crazy amazing people or experienced so much of real life. AND I wouldn’t be a sooner. And that’s just depressing. Happy thanksgiving y’all!"
I think that was the first time I acknowledged Addison’s disease as a positive influence, and truly meant it. Sure, it took away experiences I treasured but it enriched my life with so much more than I could ask for. I worked two jobs from March until August and learned more about the value of money and gained unexpected friendships. I used to think that I would give anything to be able to return to TCU and rebuild that semester, but when given that opportunity I turned it down. If I could trade Addison’s back and receive the years as a Horned Frog, it would not be worth it. I learned that it might be scarier to experience something new, whether it is a school or a disease or a relationship, but it always promises to be interesting.
Since the diagnosis, things have improved. My relationship with my family is honestly the best it has ever been, and if nothing else, that extra six months at home taught me that they are irreplaceable. With the help of my pills, my energy levels are up and I am on track for a definite improvement in grades this semester. I wounded the dragon of Addison’s disease and will continue to injure with every pill I swallow until it dies with me, in my sleep, at eighty-five at least. I will not let it steal anymore of my life, any sooner.Some days are overwhelming, but then I remember I have some freakin' sweet drugs at my disposal that can turn my funk right around. I was A Very Lucky Girl before Addison's Disease and I'm not letting go of that title.