Welcome to Chronically Crappy! I'm keen to spread the word that life with chronic crappiness and disability can be adventurous, rebellious, hilarious and fulfilling.
The first few days on the pump rank amongst getting married and doing high-school exams as being the most stressful and busy of my life. I was an exhausted, anxious, excited hot-mess (literally because I'd flown to tropical Queensland to start on the pump). I was in no condition to be able to put coherent words to what I was going through. Now, four months later, I'm ready to answer your question "how did you feel in those first few days?"
The logical first questions when hearing of cortisol pumping are - what are you talking about, how does this thing work, and what exactly can this thing do for me or my loved one? Even if you already know the science, I’m going to fill a niche by answering these questions science-fiction and fantasy style.
After 2 months of cortisol pumping, I give you Phillip the Pump! Thanks everyone who has supported Phillip with enthusiasm. People have been asking me how he's going. I've been answering with incoherent mumbling including the words "so much to learn", "exhausted" and "rash". But I've pulled myself together somewhat and I'm ready to show him off to the world.
My journey to get a cortisol pump in Australia has been long and challenging. The medical and healthcare systems created much grief. Let me take you through the 7 stages of grief accompanied by small animals.
If you're contemplating becoming a cortisol-pumper, one of the first things you'll be keen to know is "how much is this baby going to set me back?", closely followed by "does it come in leopard print?" Find out what you might need to pay to get up and pumping in Australia.
After 3 years of advocacy, I am finally travelling interstate tomorrow to get my cortisol pump. Yay! I thought it was timely to document my hopes and dreams for the pump.
As a disabled woman, I usually struggle to participate in the wonderfully boastful ritual of annual achievements, but this year I've said fuck it, I'm going to celebrate all of the ways in which I've turned my back on the goals, and kicked the football into the bonnet of the car parked on the boundary and set off it's alarm. I'm going to celebrate breaking my diet, being unreliable at work and allowing my disability to define me.
"Maybe you are doing too much", "but all of my other patients are doing well" and "if only you lost weight, you'd feel better," are classic examples of unhelp for the unwell. These unhelpful strategies caused me a storm of distress and wasted my precious time. Find out how I eventually found doctors who were helpful (hint: it involved a bin).
"Cortisol pumping is a non-evidenced based, off-label treatment that's not done here in Australia and even if it was, it would be too expensive for you and could kill you" was the wall of opposition that I faced and side-stepped before starting cortisol pumping. Equip yourself with the knowledge to overcome this wall of misinformation.
We all know the classic tale of Addison's Disease and the Magic Pill in which the young woman takes one pill a day and lives happily ever after. But have you read the alternative, Bloody Marvelous ending or the Director's Cut? In these versions, the outcomes for our herione are far more dire, driving her on a life-saving journey to find the fabled magic pump.