IPSS – a patient’s experience

Inferior Petrosal Sinus Sampling or IPSS is sometimes used to pinpoint where the source of Cushing's is coming from, generally when it's highly suspected to be a tumour on the pituitary gland. I was 'lucky' enough to have one of these a couple of days ago as my MRI for my pituitary came back clean … Continue reading IPSS – a patient’s experience

Yet another road block

18th March 2019. 2 years, 6 months and 2 days after my DVT. 2 years and 2 days after I came off warfarin. I'm back on blood thinners for life as I have been diagnosed with multiple large bilaterial pulmonary embolisms. My health just keeps getting better! Still, it appropriately happened in Blood Clot Awareness … Continue reading Yet another road block

Rare disease day

28 February is Rare Disease Day so it's probably a good day for another update on my Cushing's. It's important to highlight rare diseases; yes they affect less people than the big, famous diseases such as cancer but they can be just as debilitating and life threatening, possibly more so because they don't get the … Continue reading Rare disease day

New year, new hospital

Once again it's been a while but there hasn't been very much to report so that's my excuse. I've had a couple of appointments this week so here's what the latest situation is. I had my MRI on Christmas Eve. Not the most interesting way to spend the day perhaps but it's another step forward … Continue reading New year, new hospital

Long overdue Cushing’s update

Wow well I knew I'd been meaning to blog for a while and kept forgetting but this takes the biscuit! So here we are, a long overdue follow up to what has happened since my initial endocrinologist visit. As mentioned in the last post I have definitely declined as far as my symptoms go. They're … Continue reading Long overdue Cushing’s update

Slowly losing my mind

This isn't going to be a cheerful post, you've been warned. My potential Cushing's diagnosis is slowly moving along. I met up with an endocrinologist this week for the first time; he's not the specialist that I was referred to but is part of his team and it was an encouraging first appointment. He didn't … Continue reading Slowly losing my mind

I actually quite like this one but it's still true to my point. No, we don't always recover. If I don't get back to 100% now I'll feel like an even bigger failure!

2 years on

They say time flies when you're having fun. Well I'm not sure I'd necessarily say the past 2 years have been fun but they have certainly flown. 2 years since I was diagnosed with my DVT. It's definitely been an interesting 2 years. First of all finding out about DVTs in general and how to … Continue reading 2 years on