Today is May 1, 2013....on this date in 2011 I was diagnosed with Cushing's Disease. Today am I six-months post BLA. If you told me then this is where I'd be today, I would not have have believed it.
Sadly, though, it is to look back on the past two years and remember the struggles and heartache of searching for diagnosis, treatment, waiting to see if the surgery was successful. It feels like lost years.
Thankful, I must be that though living with Cushing's for about 5 years, including the years undiganosed....I am considered one to be 'fast' tracked among the many others in the Cushing's community who live with the disease untreated for as long as 10 years, some even more. What is wrong in this day and age, that doctors do not listen and trust their patients who tell them their health has changed. Shameful. And so Cushie's search out the few doctors who believe the patient's account of their health. We travel far distances for diagnosis and surgery.
Two years ago, I awaited the phone call from my doctor on the other side of the country, telling me that my lab data was conclusive and I could pick out my surgeon. He had a list of 4 that he recommended. In all the great states of America...there were 4 to choose from.
Surgery is not an immediate relief for Cushing's. Successful surgery brings cortisol withdrawal which is a long process of weaning the body back to normal levels of steroid. I am close to that maintenance dose now, not quite there but close. Weaning takes about 3 weeks and is dreadful. It's hard to fit that into a family's schedule. And the more I become a Cushing's survivor and no longer Cushing's patient, it becomes even harder mentally to gear of for 3 weeks of feeling rotten.
I'm still balancing my hormones too...ones that I would have never even known I had! Replacements for aldosterone, and growth hormone are tricky! Yes, adults need growth hormone too! It's how our bodies regenerate, heal, build muscle, get good sleep, and balances the body composition of fat and muscle. I just began replacing this hormone this past Sunday, it will be up to a year before I see the full benefits of doing so.
If you are reading this and think you have Cushing's...do not give up! I was told by 3 doctors that Cushing's was unlikely. And here today, two years after that same diagnosis I am healing and recovery and reclaiming my life! Thank you Jesus!
