Personal Stories - Autumn

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From Autumn's blog A PIECE OF MY MIND My Life and Journey with Cushings Disease, posted with permission:

Pulling Myself up by my Frayed and Worn Out Bootstraps – May 2013


As if the physical symptoms of Cushing’s aren’t bad enough, you have to deal with the emotional trauma of a changing body and altered self-image. If the endless, stressful and sometimes painful tests aren’t too much to cope with, you have to learn to defuse disapproving and judging glances of almost everyone who lays eyes upon you. As if the heart-break isn’t severe enough that many of my so-called friends as well as family chose to ignore my suffering or go so far as to make repeated insensitive comments, I must also endure the agony in knowing that the medical professionals I seek and pay for help will also fail me. As if the quest for better health and answers wasn’t sufficient agony, I have to learn how to cope with the over-sensitive egos of physicians who when stumped, are eager to judge and place the blame of my health issues back on me as a simple over-eating weight problem.

I get it. America is fat. I’ve heard. I know that fast food, saturated fat, high fructose corn syrup and over-indulgence are a way of life in America. That doesn’t however give anyone, especially a medical professional, the right to make assumptions. However, if you are so lacking in character that you make that mistake, I will still forgive you that human tendency. As a matter of fact, I will patiently offer a dignified and honest reply to your probing questions about my dietary habits and caloric intake. I will even relent and agreeably chart my food intake for you, noting everything that I consume down to the last ounce of water. I will however, not forgive your ignorance and bullying when upon review of said food journal, you scoff at me and accuse me of lying. I will not stand idly by with my head hung in shame as you attempt to belittle and brow beat me into admitting some wrong or deception that you are certain I have committed because you are unable to fit me into a text book mold of what Cushing’s “typically” looks like. Shame on you and your eye-rolling, self-absorbed arrogance!

I am not sitting in this “couture” hospital gown with my ass hanging out, reveling in your contempt of my fat. Trust me when I say, I have enough contempt for my body and the limitations it presents in the life I desire to lead. I did not decide to spend every spare dime, and put my household in debt simply because I had spare time that I wanted to waste submitting to a plethora of tests, many humiliating in nature, instead of hiking with my husband, visiting my friends, or spending time doing something I enjoy - like painting. In case you were wondering, I didn’t wake up one morning and think to myself, “I would really enjoy being ridiculed and belittled by a complete stranger. And better yet, I would absolutely love to pay them large amounts of money to do so!”

DEEEEEEEP BREATH….

Let me back track for a moment. I am a Cushing’s Disease survivor. I use that statement exactly as it is defined. I am surviving. I am not living as imagined I would. My life is limited. My goals are altered. But I am surviving. Somehow.

I was finally diagnosed with a pituitary adenoma in May of 2005. Cushing’s I had survived a 2 year battle of rapidly declining health that almost ended in tragedy. My body systems were finally giving out and shutting down. That was my saving grace. Without this severity of reaction, I can only imagine that my declining health and quest for answers would have gone on without resolution. But I was lucky. I got a diagnosis and had my tumor removed within 30 days of the diagnosis as a result of my declined health. I was 30.

I was hopeful that my recovery would be quick and that I would be able to resume my life where I left off. It didn’t really work out like that. I faced a plethora of residual health issues as a result of the trauma that my body had endured while searching for answers and an initial diagnosis. But, life goes on and I must admit that I tend to follow the school of thought that things happen for a reason.

The reason I latched onto was that I was meant to help raise awareness for this rare disease. I was meant to offer a shoulder to others who were in need of support in their own quests for answers. I decided that my personal heart-ache and losses (not being able to have children being a huge obstacle in my life - amongst other life altering factors) could be used to help others. I wanted to make a difference in some small way this world, (who of us doesn’t?) and while it wasn’t what I envisioned, it was the hand I had been dealt, and so it would be. I was resolved to that.

Living through the Cushing’s diagnosis process is one of the most daunting, terrifying, wearisome, traumatic, self-Ioathing, infuriating processes that anyone could ever imagine. It isn’t like Cancer. There isn’t a definitive test. There isn’t a mutated cell to take a picture of. There isn’t a foundation set up to educate and advance the research of diagnosis, treatment, recovery and prevention. It is one of the most difficult things that many of us will ever endure in our lives. Unless you are living it or have lived it, you have no idea. I can think of many things in my life that have been life altering; the death of my father, the 5 kidney stones that required hospitalization, the brain surgery I had to remove the tumor on my pituitary, and the list goes on. But, the diagnosis'' of Cushing’s Disease was by far the most traumatic thing I’ve ever endured. But I did. I came out on the other side. I was vindicated, (if you can call the diagnosis of a rare, life altering disease vindication). I finally had my answers and would never have to face the daunting task of insecurity or self-doubt again. Or would I?

Eight years later, oddly enough almost to the day, I was back in a doctor’s office with my ass hanging out of yet another well-crafted couture examination gown. But, I had a sense of ease because despite the ugly symptoms that were wreaking havoc in my life, I was a Cushing’s survivor and I knew what was going on this time around. There was an MRI with a photo of the tumor. There was a medical history that clearly mapped the ground we had already covered. While not ideal in my life plan, I was feeling an ease that this process would not be the struggle that it was previously. How could it even compare? We were educated about Cushing’s. I had lived the life. I was my own text book. I preach being your own health advocate and I felt as though I was doing just that. I was engaged in conversation with an Endocrinologist who was engaged and earnestly listening to me. My type A record keeping was proving to be a big help as my medical history is extensive and this Physician was new since my recent move out of state. I was feeling fairly confident – despite my bare backside catching a draft in my gorgeous gown.

My initial visit went well. I felt as though I was heard, and my concerns were acknowledged. A plan of action for extensive testing, some of which were at my request, was put into place. Over the next 3 weeks, I was subjected to the full gamut of tests raging from blood panels to an MRI to take a new picture of the slightly larger tumor that was sitting on my pituitary. Despite my failing health during this time, I reminded myself to don my big girl panties and push through the pain as the light at the tunnel was close at hand. Just as I reached the light and as certain as it was, so too was the certainty of the train barreling down on me.

Yesterday, that train hit me dead on and derailed me.

I arrived to my consultation follow up appointment yesterday eager to discuss a plan of action. I have been feeling so terrible for so long, that I was ready to feel better and I was mentally prepared for whatever proposed plan of action was determined would help me.

The arrival of an unfamiliar face in the consultation room threw me. I was circling back in my mind to take in what was happening as this new physician asked who I was and why I was there. I was having trouble focusing on her face and big red flags began to fly in all directions. Her questions were barely audible over the angry, stuttering in my head that kept repeating, “What the…. What the?!? WHAT THE?!? at an alarming increase in internal volume. I was ill prepared for the barrage of questions that she had about my medical history and why I was there. I leaned my head back for a moment and closed my eyes in an attempt to cease the spinning of the room. With a concerted effort, I drew in a long breath and without taking into consideration what she was rambling on about, I said in barely a squeak, “I’m sorry to interrupt, but I’ve already been through all this with my doctor during my initial visit. I spend close to two hours with him. I am just here for a follow up consultation after all the tests that were done. Where is my doctor?”

In complete disregard of my inquiry, she cocked her head to the side, studied me for a moment and said, “Well what exactly did he say he thought was wrong when you saw him?” I was able to keep my composure long enough to reply that I honestly didn’t remember exactly what he said when I saw him, but it was not a matter of figuring out what was wrong as I already had a diagnosis and treatment history.

These words were lost to the air above. They hung in the room as she began to audibly review my digital chart in the computer asking questions about my history in rapid fire. I again struggled to regain my composure and bluntly stated, “I’m sorry, I didn’t bring my medical history binder with me this time as we reviewed it in detail and the Doctor took copies last time I was here.” Again, she stopped and contemplated me, giving me a head-to-toe glance, (you know the one I’m referring to!). She cocked her head to the left, placed her hands in her lap and adapted that look of condescension before spilling adding this question to heavy, ever hanging words that were already glowering down at us from the air above: “What exactly are the symptoms that have brought you in today?”

In the midst of every alarm that was ringing in my head, while feeling the hair on the back of my neck bristle, the ever-growing knot in my stomach turned to a cement brick that with its solid landing in the pit of my stomach, brought the realization of the impending outcome. The room stilled and I carefully detailed a quick yet extensive list of my most prominent concerns. She continued to gaze at me as if contemplating what to say next. But, I already knew the words that were coming before she formed them on her lips. My head hushed, the air in the room seemed to disappear and suddenly I was watching from the above. I watched in horror as the me on the examination table collapsed ever so slightly under her glower. I watched from above and brought my hands to my mouth and whispered, “nooo!” as I saw the grip of self-doubt and self-loathing reach out and twist it’s hands around the me on the examination table. I watched from above and winced as I saw the pain cross the face and radiate through the me on the examination table. I watched from above and heard the almost inaudible catch of breath from the me on the examination table as I waited for the inevitable words that I knew were coming. I screamed from my perch above as if my pleadings could stop the words that were already rolling off the doctor’s lips, but it was to no avail. From above, I turned to face the me on the examination table and I begged that she not hear the words that were coming. I beseeched myself to simply stand up and walk out, but I was locked in place, just as a target that has a missile lock. From above I slouched to my knees, hung my head, and wept, waiting with baited breath for the impending. And suddenly, there they were - the tone robust with condescension and judgment. The words were icy, pungent and cut through the room, ringing clear as a gunshot:

“Let’s be honest about those symptoms. You don’t have Cushing’s. You’re fat.”

From that point on, I don’t need to detail the questions or conversation that ensued. It is all too familiar territory for anyone afflicted by Cushing’s disease. You know that pain. Most likely, simply reading these words has conjured up an emotional torrent within you as you have lived this experience in some manner yourself. Needless to say, I was wounded. No. I was devastated. I was in disbelief that I had, despite what I had endured to date, found myself back at square 1. Admittedly, I cursed when I woke up this morning, realizing the easy way out would have been to simply not wake. I feel desperate. I once again feel lost. I am, most obviously having trouble wrapping my head around these events.

However, what I want to put out there, what I want to emphasize about this experience is this: It doesn’t matter if you are looking for answers for the first time, or are a previously diagnosed patient with another tumor, Cushing’s is not a simple battle. It is a war - a war we have to individually wage against a variety of forces. One battle may be our family, another might be those whom we thought were friends, and yet another battle will most certainly be the very medical professionals that we look to for help. We will be wounded. Scars will remain. But, it is the way that we cope with the onslaught of trauma that defines us – NOT THE DISEASE. I am not Cushing’s. I am Autumn. I will pull myself up by these tattered, frayed and worn out bootstraps - and I will survive.