Mucky Mush

This was the state of me when I woke up this morning.

Gorgeous right??

My tongue was more gory but it’s rude to poke that out without a warning. This is the morning after a night on the towels. Actually it wasn’t that bad. No towels required for drooling blood – just a cast iron stomach from gulping goo.

I have been doing prophylactic injections for my latest period but stopped those yesterday morning when things eased off down below.

It amazes me however how quickly things get back to normal, or in my case – way below normal. Last night my gums bled from when I brushed my teeth at around 10pm, until after I got up at 9am this morning. My lips weren’t too bad really. They have been known to completely stick together, so much so that I would win any sponsored silence by a very clear length. This morning they were, as you can see, just a little bloody. The way yours might look after a few too many red wines. Not how I would like to answer the door admittedly but far from scary to passing passersby peeping through my curtains.

Luckily, as is sometimes the case, things seemed to clot off once I’d had my breakkie, mebbe it’s the ice cold milk on my crispies?? I didn’t need to shoot up this time.

And therein lies a common conundrum – to shoot up or not to shoot up – that is my question…

0 thoughts on “Mucky Mush

  1. hi Ros i am serve vWD as well and reading your blog it seems like yours is not well managed, and i think i may have a few ideas that may help, you never know. Some of the things you have written makes you think that you may not have received very good advice and a doctor saying he didn't understand RiCof levels suggests to me that you need new doctors LOL. Any way if you want to you can initially email me at and i'll give you my full contact detailsRegards Grant


  2. Caroline – thank you my lovely, but dare I say, you're a weeny bit biased 😉 Grant – hello and welcome to my blog. Very good to hear from another severe von Willebrand. I can see why you think my von Willies is not well managed but over the years since I've been in Birmingham it has been investigated further than it ever has before and we do seem to be getting somewhere. I did say in an earlier post that my doc admitted he didn't know exactly what RiCof levels were needed for me to have a clotting effect. He was thinking because I'd had a poor response to treatment in the past that I could have had an inhibitor – which means your body itself limits the effect of the treatment. He does understand RiCof levels as he is a very experienced haematologist it is just that my response to having high RiCof isn't always as one would expect and sometimes I still bleed when my RiCof levels are considered high by normal standards – hence his concern re inhibitors.However, I am always pushing to get more answers and better control of my bleeding, so I would love to hear what ideas and experiences you have that might help. I really appreciate your offer of


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