I’ve been more absent here on the blog then I’d intended to be over the last few months, but I’m still here – working hard!

Over the last couple of months, I’ve had some very cool opportunities which I have been under strict secrecy with – but soon, all shall be revealed!
It’s also been a few months of unexpecteds – medically, physically and mentally. I will do a better, bigger update, but for now, some flying updates.

Hydracortisone – The replacement dose of the steroids has been much more pleasant to be on than the prednisone was. I am getting next to no noticeable side effects, and I’m so pleased to report that my sleeping pattern has gone back to that of a more normal person. Overall, it’s been positive. However, with every positive something else always crops up, and for me that’s been in the form of adrenal crisis.
Each time I now develop any kind of infection (and thats fairly regularly thanks to being immunosuppressed)I seem to now crash and end up usually in hospital. I’m working at avoiding this, by taking my meds more contentiously and being very ‘on it’ with sick day rules, but it’s been difficult to get used to and in my head, it’s a sign that my adrenal glands are really not working… which is bittersweet. On the one hand the hydracortisone is working, on the other hand, my adrenal glands are clearly not.

Weightloss – I never want my space to become a triggering one, so I’m not going to speak about weight too much. However, I’m so much more comfortable now that I have lost some of the weight from the height of my Cushings. I was in so much pain, my skin was splitting. I’m not sure if that was just the Cushings, or whether that was because of having hEDS as well.

Although the physical numbers on the scales haven’t changed massively, there’s a definite visible change in how the weight is sitting. The weird thing about Cushings is the shape is makes you – you end up pudgy in all the wrong places and it feels extremely unnatural. My endocrinologist suggested that the weight will continue evening out for around the next 6 months, until I reach a settled weight after all the misdosing. I will write more about it, but according to them, the replacement dose is negligible in terms of the side effects so I am now as close to ‘normal’ as I can be without having working adrenal glands.

Finally, I’ve had some exciting adventures in the last few weeks, including getting to explore lovely Dorset a bit more, going to Camden, helping with the doctors PACES exams and teaming up with Barnardo’s for a collaboration around the Taylor Swift Album launch.

I have so much I want to write about in the coming weeks, I just need to find the words. Until then, here’s the quick updates!

Mali