Welcome to my blog! You can start by getting to know a bit more About me or for a more detailed explanation of how I was diagnosed, have a read of my posts The Journey to Cushing's Syndrome and Part II the saga continues. Bienvenue sur mon blog! Vous pouvez commencez par decouvrir Mon Histoire avec Cushing's

Friday, 28 September 2012

Being ME

Hey blog readers!

Hopefully some of you watched the videos I posted from the US. I only ended up making 2 which is obviously not very impressive and they were very short but turns out I am much more camera shy than I thought! I was also having so much fun and was just so busy that I thought "I'm sure my blog followers will understand"...

I got back from the US on Sunday the 23rd after nearly 3 weeks of sightseeing, connecting with friends and enjoying life! I really didn't want to come back. I mean, I missed my place and was starting to get a bit tired of living out of a suitcase but I have to admit, it was nice just being carefree and enjoying myself. Now that I'm back, it's back to reality and it's not easy....

Sunday, 2 September 2012

US vlog

I have decided to attempt to document my US trip using video blogs or vlogs. I will try and upload a video to my YouTube account (CushieSteph) every day or at least whenever I have access to the internet. The new videos should show up here on the blog in the little video box on the left hand side. But the easiest thing is to subscribe to my YouTube channel: www.youtube.com/user/cushiesteph

I'm really looking forward to this trip as I will not only be attending my friend's wedding and seeing my sister and a friend of mine who recently moved to NYC, but I will also be meeting up with some fellow Cushies.
I can't wait to meet more women who have been through and are still going through the hell that I endure. I hope that we can share and learn from each other.


Monday, 20 August 2012

Back in London town

It's been over a month since I last posted and a few things have happened since then. Firstly, I flew back to London on the 15th of July to attend my endocrinology appointment on the 17th. But after finding out that I was suffering from recurrence I had pretty much decided that I was moving back to London anyway. Although this was slightly disappointing as I'd hoped to stay in Hong Kong a little longer, I just felt more comfortable being treated in London where they have most of my medical history and more importantly, I speak the language (i.e. English).

Though I was unable to see my usual endo and had to wait for about an hour, the doctor I met with was very friendly, understanding and took the time to listen to me. He also confirmed (again) that he agreed with the diagnosis of Cushing's recurrence. He then went on to inform me that he wanted to act on it fairly quickly for 2 reasons. 1) Medication to treat Cushing's is toxic for your liver and very difficult to dose accurately therefore it is highly discouraged and 2) the neurosurgeon that did my first surgery and is arguably the best neuro in the UK is retiring soon. In fact, he told me he was retiring in 3 months which kinda freaked me out because I knew that I had my trips to France and the US planned and I really didn't want to have to cancel them. Luckily it turns out he isn't retiring until December but I only found that out a couple of days ago so until then I was stressing wondering whether I'd have to cancel my US trip and miss out on my friend's wedding.

So on the health front, the next step is a T3 MRI which is happening at the end of the month and if the tumour still isn't visible then I'll probably have to undergo IPSS which I think I've explained before. Basically it's a test where they thread a catheter up your thigh all the way to your brain so that they can take blood samples along the way and see where your body is excreting the cortisol. Apparently the procedure is as nasty as it sounds because you have to be awake for it! Needless to say, I pray I won't have to go through it...

Apart from the health worries (which have become part and parcel of my life), everything else is going pretty well. I am so proud to have been accepted on a Counselling Psychology course. I was supposed to start in September but which everything going on I think that I will be requesting for a January start instead. I think it's more sensible because I'm likely to have surgery in the next few months and recovery is no joke.