[Beryl]

Hi,
I understand what you're saying. I've said the same thing for years..decades! These days I find I'll try anything. I've been doing EMDR which has helped alot. It was designed to help post traumatic stressed soldiers and this disease is as traumatic as anything I've seen. It helps me- google it and see if it sounds like it might be helpful. I can't imagine how you're feeling now. I hope you get some relief. You deserve your wedding.
You deserve your health.
Keep fighting tough girl!
Beryl





My acc

Originally Posted by squirrellypoo

The big consultant just told me a few minutes ago that they're going to start tapering me off the cyclosporin, hooray!!! It's about the only good news I have right now, being readmitted and looking at a possible 6-wks inside for liver infection. And the registrar just told me I grew a culture in my hickman line so now they might have to remove it, and my possibly weekend release has just evaporated into more antibiotics, and a MR-guided liver biopsy on Monday.

Saturday was supposed to be my wedding day. We had to postpone it a year a few months ago, but we still wanted to celebrate it somehow amd now that's ruined.

So in the past month, I've been home for precisely 5.5 days. I've refused to eat the same food choices over and over and over again this time around - everything is mushy and bland and formulated for geriatrics and for a foodie, it's pure torture. So my fiancé is an angel and bringing my meals in since my neutrophils are high.

And beryl, stress is a major problem for me because they've taken away from me every mechanism I had for dealing with it. I haven't been able to run for 11 months now, there's no baths anywhere, the bmt left me with zero libido whatsoever which leaves me without release and simultaneously contributes to more stress, and my masseur neighbour can only come round once a month or so. And I'd rather stab myself in the eyes than do yoga or homeopathy or other new age crap, no offence to anyone out there. It's not me in the slightest. About the only coping mechanism left is crying, which is hardly emotionally healthy, but then again, neither is anything else about my inpatient stay.