Where have you been?
It’s a question I’ve been receiving more frequently, as I seemingly dropped off the face of the earth and went radio-silent.
The truth is, I’ve been forced to do what’s hardest for me: slow down and stop everything. I’ve been avoiding an explanation for quite some time now and for various reasons: fear, hope that it’ll go away if I don’t acknowledge or talk about it, not wanting to repeat the complexity of the situation over and over again. But that avoidance and secrecy is causing me more stress than benefit.
So here we go. Here is my confession (if you want to call it that) – six months ago I was diagnosed with Cushing Syndrome and it’s turned my entire world on its head.
What the hell is Cushing Syndrome?
It’s pretty rare, although my belief is because it’s not highly understood by medical professionals and often misdiagnosed. I don’t expect most people to have heard of it. So here, let me Google it for you.
For those of you that don’t feel like researching (and I don’t blame you), here’s the high-level explanation: I’m over-producing Cortisol at about six times the rate that any healthy human-being should be.
What is Cortisol, what does it do, and why is this bad?
Anatomy lesson for the day: Your adrenal glands produce Cortisol in response to stress (physical or mental – our bodies don’t differentiate between the two). It’s your “fight or flight” hormone – the physiological reaction to a perceived threat in preparation to fight or get the hell out of the way. This hormonal hullabaloo prepares us for vigorous muscle action that fighting or escaping pronto requires. There is typically long-term trouble within all of your body’s processes if it’s under this constant state of stress, as is mine. The release of Cortisol triggers increased blood pressure, decreased lung and muscle function, and messes with your blood sugar levels. Simultaneously, blood vessels constrict in many parts of the body, immune and digestive function slows, bone density suffers, and other necessary hormones become depleted. In my case, my body is under a constant state of emergency thanks to two tumors on my adrenal glands. No bueno.
So now what?
Because I have to be such a special snowflake (intended to be read with sarcasm), my form of this condition is seen in about 1% of patients. I look nothing like the doctors would expect a Cushing’s patient to look like. There is not an enormous amount of medical research on it, nor is there a known cure aside from removal of my adrenal glands altogether, which would present a whole new set of implications to deal with – clearly a last resort.
I’ve been lucky enough to have been given the opportunity to participate in a medical study to test a drug that they hope will suppress Cortisol levels. There are strict eligibility requirements, which I’ve met, and the clinical trial is capped somewhere around 90 people globally (#specialsnowflake). It is slated to last around 18 months and, without getting into detail, is very demanding of me and my oh-so-precious time. This is an experiment. There are no guarantees but I am going in with high hopes because… why not?
If this doesn’t work, I’ll have to think of a new course of action. I don’t know what that is but I’m not there yet, so don’t ask. I’m not worrying about it right now.
What I feel
Physically: Tired. Some days it’s so bad that even standing up is a struggle. As a data analyst, I’ve tried to figure out a pattern to these extreme levels of fatigue. I can’t seem to identify any trends to help forecast the crash-and-burn and neither can doctors. We’re working on it. In the meantime, I need to be patient and gentle with myself. Lots of naps. Lots of rest.
Mentally: Anxious – and usually it’s unjustified. It’s a side effect. Scared. Of the unknown. Of the future. Of not getting my normal life back or feeling 100% again.
What do I need?
Those that are aware of my situation have asked what they can do for me. The only thing I can really ask for is love and support. Be patient. Understand that my absence is only because my efforts are focused on recovery and healing. I do not value my relationships any less. I am just learning the value in taking care of myself and prioritizing my health, and accepting that I have boundaries and limitations, and there are certain things that I just can’t do right now (like long, scenic rides. But God damn, do I miss my bike).
I’ve grown up more in the past six months than I have in my 28 years of life. One of the many things I’ve learned in this short period is that you can do everything right and sometimes shit just goes wrong. I do realize and take responsibility that I definitely wasn’t doing everything right. Pushing too hard, working too much, not sleeping enough. Not valuing myself. For those of you who know me, these are the things that are hard-wired into my persona and what I’ve always done best. Needless to say, this has been quite a challenge on many fronts.
This is the type of confession that I haven’t wanted to accept or admit. I’m supposed to be a model of health, strength, and most seem to think I can do anything. But here’s another reality:
We are all human. Including myself. And like all humans, I am also imperfect. But I am enough.
I’ve had to talk myself out of calling this giving in. To me, while a struggle, I’m calling it acceptance. I’m calling it evolution. Change doesn’t mean a shift to worse. It means a readjustment to better. Just because you can’t do what you’ve always done doesn’t mean you can’t be better than before.
So I’m slowly making a comeback, but in many ways I’m here for the first time. Old me. New me. They meet in the same place: a never-ending quest to find ways to live better, feel better, and be grateful for every moment of life.
Looking forward to what’s to come. Cheers.
Em!!!! Thank you for sharing and being vulnerable! I love your positive attitude and strong and beautiful personality!!! You will do amazing thing no matter what come your way. You will always find the light and peace in every situation. Sending you good vibes always. Know that I will always support you even from far away and even not talking on a weekly basis. It doesn’t matter, I will always root for your success!!! You rock and are a huge inspiration! xoxo
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i’m so proud of you. you already beat this.
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Emily, I am confident that you will beat this “Cushing thing”
You write so beautiful , why don’t you put all of this in a book ???
Thank you Giselle! I am considering something along those lines actually 🙂
Sounds familiar…stay strong. I have the same issues and yet have the sarcasm that you hold as well.