When I was in undergrad at UF, I took a class about the psychosocial aspects of rehabilitation. The term “psychosocial” defined means relating to the psychological and the social aspects of something, in one fell swoop. In treating disease and disability, this is often an overlooked entity, as a traditional or specialist MD doesn’t specialize in the psychological aspects of the medical condition. In treating my disease, I have a treating endocrinologist, a supplemental/second opinion endocrinologist, a neurosurgeon who specializes in pituitary tumors, a new neurosurgeon who specializes in a different type of brain surgery, a general doctor/nurse practitioner duo, a psychiatrist, a therapist, and then numerous people with various specialties. For convenience’s sake, it would be ideal to set aside a day a month or so and have 10 various appointments, but that’s not realistic by any means, and I have to travel to see my specialist team members at Shands, which is located about 2 hours from my home.
If you’ve followed my story at all, you’re well aware that Cushing’s is a very complicated disease, and it manifests itself in so many ways. It all started with a brain tumor that caused an over-production of cortisol in my body, which in turn tried to ruin my life. It changed me both mentally and physically, and I am still recovering on both sides. Psychologically, I’ve been all over the place, from being severely depressed/suicidal, to being manic and blowing through my savings account and drinking way too much and waking up at 4:30am everyday, regardless of what time I went to bed. I went from having an overly flat affect and not being able to really have any sort of emotion (other than the desire to die) to being too emotional, with a vocabulary that mainly consisted of the “F word” and other words that a well-educated young woman should not use in the company of others. I made new friends along the way, while damaging pre-existing relationships with others. It’s not something I look back on with fond memories, but the only thing I can say, is that it wasn’t me, it was my disease, and I apologize.
I have greatly recovered from many of the physical and psychological manifestations of Cushing’s Disease, but I’m not sure that I’ll ever be “cured” of this monster that lives inside of me. I recently went to Shands for an appointment with my endocrinologist down there, and she had my latest lab results, and bluntly told me that I’m “not cured”. She recommends I have my adrenal glands removed (bilateral adrenalectomy is the technical term), as a quick fix to my ongoing health saga, but failed to mention the possible complications from that. In doing my own research, I’ve found that I would trade Cushing’s Disease for something called Addison’s Disease, meaning I’d go from making too much cortisol, to not producing any at all. In addition to the trade-off in diseases, I’d have to be on replacement hormone pills for the duration of my life, and literally could never be caught without my meds, or I’d run the risk of dying. Cortisol production is not the only function of the adrenals. An alternative option I have is for stereotactic radiosurgery, which is “bloodless brain surgery”.
Unfortunately, there’s no magic elixir for healing from the after-effects of Cushing’s Disease. I am trying my hardest to live an extremely healthy lifestyle, and be overly aware of what I put into my body. I cut out all processed “foods” for the most part, and try to just do whole foods that don’t have ingredients that I can’t pronounce. I recently bought a bunch of food-related books, dealing with the food-body connection, pH balance in the body, obesity in America, etc. etc…They should keep me busy until my next doctor’s appointment, which is coming up on December 10th with a new neurosurgeon, one who specializes in stereotactic radiosurgery. By doing what I’ve been doing since coming off of steroids following my third surgery, I’ve lost 30ish pounds (120 sticks of butter, barf) and have an increased level of motivation to get back to my pre-Cushing’s weight.
I’m so motivated to lose the weight, because I feel as it is a big hindrance in pretty much every aspect of my life. Thinking back about my entire life, I don’t think there’s ever been a point in time where I’ve actually loved myself; I’ve always found fault with basically everything I do and always see the room for improvement rather than focusing on what I have accomplished. However, throughout this whole ordeal with Cushing’s, I have finally developed a self love from within, and I’ve accepted this disease for what it is. It took me quite awhile to realize that some greater force (in the form of a brain tumor) did this to my body/life; it wasn’t my choice. I am worth the end result of looking and feeling amazing, therefore I’m going to work my ass off in order to achieve those results. I don’t think the general public knows that a brain tumor can literally make you become obese in a matter of months, regardless of what you do to combat the weight gain. But that happened to me and I can’t go back and change that.
I’ve spent the last year and a half hiding from cameras and not wanting people on the innernet to see my face. Along with my newfound self-love and acceptance, I’ve come to terms with the fact that this is who I am and I shouldn’t be ashamed of my physical appearance. I’ve put together a nice little photo collage of me over the years, in chronological order, from a wee lassie to this past Saturday. The bottom 2 pics on the left are 2 of the only pictures I took while in the height of my disease, as I shied away from the camera more often than not. The bottom right picture is me during the recovery phase of this Cushing’s nonsense, a drastic improvement from around this time last year. One day you’ll be able to see my dimples again, they’re simply staying warm during the cooler weather we’ve been having.
I’ve never been rail thin throughout the 26 years I’ve been alive, but I have always been relatively healthy. Body image is something I’ve battled for as long as I can remember, and I think I’m ashamed of my body largely due to the societal norms we have in place here in America, and how I no longer fit into those norms. I’m not being vain, this is straight up how I feel. Underneath the copious amounts of fat I’ve gained,
I’m still the same person on the inside. I’m a much better person on the inside, and I’m proud of that. Most people will be fortunate enough to go through life without a serious health complication (except maybe in old age) and a crazy rare disease, but I wasn’t so lucky. It’s a major road bump I’m having trouble getting over, but I know that I will one day. I’m still battling the medical side, in addition to the psychosocial factors that go into treating disease. It’s not an easy thing I’ve had to deal with, but I am so thankful for my friends and family (and even strangers from the interwebs) who have been by my side every step of the way.
In addition to my phenomenal support system, I’ve had the pleasure of working with some amazing (and not so amazing) doctors and nurses. I have no idea when this will all come to an end, but the month of December will be a joyful time of lab tests, a consultation with a new neurosurgeon, an MRI, and of course the holidays!
I like to think that pop songs all have an element of truth behind them, so I’ll close with some lyrics for the song I’ve been stuck on lately: “You shoot me down, but I won’t fall…I am titanium…” (thanks, David Guetta!)
…or a mass of fat, organs/tissue, fluid and bones, but you get the point.
With love and a microscopic brain tumor still in tow,