An adventure in Cushing's and stroke

This story is a prelude to “World Domination Can Wait”; without this, the stroke would not have happened.

I’m not really sure where this story starts, to be honest, and I’ll get to that later, but for now, I’ll start with an evening in winter of 2008. Earlier that day, I had made muffins at my boyfriend Sam’s house. We had dinner, then a muffin for dessert, and then I left him to attend a book club meeting in a café. I didn’t plan on eating anything, but when the waitress came around, I ended up ordering a garden salad which I thought would be small. It wasn’t, and I ate the whole thing anyway. A few days later, I was feeling particularly emotional about my weight, since I had been gaining a lot of weight, especially around my tummy. Sam said to me, in the kindest way he could have said it, that while I ate incredibly healthily, I also ate a lot. A lot more than I should have been.

He was right. There was a reason, though. There was a reason why I went to bed hungry, woke up hungry, would feel hungry not too long after meals, and would eat anything in sight. That reason is a delightful little disease called Cushing’s Disease. And it’s not actually delightful, it is total utter shite.

Cushing’s is caused by excessive cortisol in the body, which is a hormone usually released from stress. It regulates things like blood sugar and kidney function, and it is essential for life. When you have too much, you get what is called Cushing’s syndrome, and one particular kind is called Cushing’s Disease. Cushing’s disease is caused by a tumour on the pituitary gland, and I had one that was 8mm by 6mm in size and was excreting lots of ACTH, the hormone that tells the adrenal glands to produce cortisol.

I had pretty much every symptom of Cushing’s you can get. My skin became weak and fragile, and I bruised very easily. Bright pink stretch marks appeared on my legs and across my tummy, my arms and legs, lost a lot of muscle, I developed a very round, red face, I gained a lot of weight around my belly, I had a slight buffalo hump, my potassium levels were low, I would wake up with a sore back every morning, I would get up in the middle of the night every night to pee, I woke up at 6am every day just because I couldn’t sleep in. After exercising, I would get bruises or little red spots all over my arms and boobs. My periods were irregular, and in December 2007, a gynaecologist had diagnosed me with polycystic ovarian syndrome.

All of this made sense after I saw my endocrinologist in October 2008, and everything moved very quickly after that first appointment.

11^th October, 2008:

First appointment with Dr Champion.

13^th October, 2008:

I had a blood test and the 24 hour urinary free cortisol test. I collected my pee over a 24 hour period in a giant plastic container, and that was tested for the cortisol levels. Normal is around 300 nmol/L, and mine were 4200.

14^th and 15^th October, 2008:

I had the overnight dexamethasone suppression test. This was a simple one. I took a tablet at 11pm on the 14^th, and had a blood test at 8am the day after.

17^th October, 2008:

Second appointment with Dr Champion. These early appointments with Dr Champion were pretty much a crash course on Cushing’s and what it all means. It was intense.

22^nd to 24^th October, 2008:

I was in Nepean hospital for three days and two nights for the 48 hour dexamethasone suppression test. I read five books and had a lot of blood taken. When I was in Nepean, I also had a CT scan of my chest.

27^th October, 2008:

I had an MRI of my brain, and saw Dr Champion that afternoon. They found a tumour, which was exactly what we were expecting.

3^rd November, 2008:

I had the pre-procedural bloods for the sinus sampling test.

11^th November, 2008:

I met Dr Dandie, my neurosurgeon, for the first time. He explained to me all the risks of surgery such as death, or stroke, but said that the chances were very low. It’s not as though I had a say in the matter—as both Dr Champion and Dr Dandie pointed out, it was surgery or die.

13^th and 14^th November, 2008:

The inferior petrosal sinus sampling test in Westmead Hospital. There was a very cool hover mattress that transferred me from the normal bed to the bed where it was performed. Needles were stuck in my groin, I was pumped full of drugs, and had lots of blood taken.

21^st November, 2008:

I had another appointment with Dr Champion, and by now, most of the plans were in place.

26^th November, 2008:

I was admitted to Westmead Private Hospital, ready and waiting for surgery.

27^th November, 2008:

The surgery was performed at 7am by Dr Dandie, and the tumour was successfully removed. My pituitary gland was left intact, which was fantastic news. The slight complication that occurred after surgery can be read at “World Domination Can Wait”.

***

Cushing’s is a very crappy, ugly disease. After the surgery, after the stroke, when I was back at home and trying to figure out what had happened to my body, I found a Cushing’s support forum where some members had said that this disease had been nicknamed “The Ugly Disease”. I completely understand why. When I had Cushing’s, I would see myself in the mirror and hate what I saw. I hated that I looked pregnant when I wasn’t, I hated that I had these bright pink stretch marks, I hated that I couldn’t even have sex without little red spots appearing on my arms and boobs because just lying there was too strenuous (And seriously, not a lot of effort is involved when you’re on the bottom in the missionary position).

I thought that having a flat stomach was never going to happen, and the reason that I was exercising and still not working was because exercise was a myth. It was just a special brand of torture that actually had no effects. I thought that I was fat, lazy and unmotivated because I could not control how much I ate, and every time I stepped on the scales, the numbers would go up.

Needless to say, life without Cushing’s is fabulous. I sleep in, I don’t wake up with a sore back, I don’t bruise easily, I exercise and it actually has a noticeable effect, I’m not constantly hungry, and I no longer hate myself when I look in the mirror.

My stretch marks are still there, and they are not going to go away, but that’s okay. They are my souvenirs.