Prior to being ill I was healthy and fit, hard working, and living life to the fullest.
To this day I still don’t know how long I had Cushing’s, but between my doctors and consultants we think about seven years – six before diagnosis! When I first found out that I had Cushing’s, I found the stories of others really helped me to understand the disease and what to expect after treatment – which in my case was the removal of an adrenal gland and tumor.
At various times I had almost every single symptom of Cushing’s, yet despite numerous doctor visits, hospital scans and a multitude of ailments, I went undiagnosed for more than half a decade. Eventually I was referred to an endocrinologist who was very intrigued to hear that I only pursued a referral due to my sister-in-law and brother’s constant nagging for me to be tested for Cushings. My sister-in-law is a vet and she was convinced that I had it; she said that if presented with the symptoms I had, that would have been the first thing she would have tested for! After diagnosis I was told that I would need surgery; after being cancelled 3 times, this finally took place in July 2017. I was told what to expect and an approximate length of recovery, but I was still unprepared for the recovery stage.
On the positive side, most of my ailments went away quickly – I lost the big belly, the round face and shoulders, my diabetes has gone, and my blood pressure is back to normal and I am no longer insomniac. The last six months have been very tough, however – I have been in constant pain and had an adrenal crisis so was back in the hospital for a bit – my body felt like I’d been run over by a steam roller. We had a family holiday booked for Spain in August and I managed to go on that, however I missed a few days as I was ill and bed ridden , but it was nice to be in the sun. I had to keep adjusting my steroid levels and finally got it correct and still take it now with the hope that I can reduce/come off it very soon. I have had numerous doctor and hospital visits since, as I was still in pain and don’t feel right. This is despite the surgery being a success.
My most recent hospital visit was to a consultant rheumatologist after a few doctors determined that the increasing pain in my joints might be a form of arthritis. So back to hospital I went. After more tests, a very confused consultant informed me that they concluded that I have Lupus, which is odd as again it’s very rare in men and for people of my age. Lupus and Cushing’s seem to be rare in men and hormonally related – we even joked that perhaps I was turning into a woman!! The consultant was a bit confused and unsure if this had anything to do with the Cushing’s or its treatments, so I was referred back to my endocrinologist. She confirmed my remission from Cushing’s and that we’re just waiting for my adrenal gland to kick in so I can come off the steroids. The Cushing’s could have been masking either Lupus or rheumatoid arthritis, and although I am still poorly recovering from Cushing’s and in a lot of pain, I am now in another loop of testing to determine if my new symptoms are indeed Lupus or arthritis in hopes of finding a treatment for whatever it is. All in all it’s been a long journey and it’s not over yet but I do feel I am nearing the end and will be on the mend soon.
My journey with Cushing’s contains a lot more details, but my main goal is to let fellow suffers know that yes it’s a difficult road to recovery but unless you’re unlucky like me your body and life will get back to some form of normality and you too can start living it to the fullest again. To those of you awaiting treatment I wish you all the best and those recovering good luck and God bless.
Winter/Spring, 2018