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Documenting not dying since October 2013.

The 16th & 17th; Frankly I'm not sure I want a normal lifespan.

The 16th & 17th; Frankly I'm not sure I want a normal lifespan.

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The 16th of March. 

Well I am still avec plumbing which was not the plan. Igor texted me at quarter to ten last night to say he'd not heard back from Andrew, and Ram wanted him to be in the loop before we take the line out. So it's still in my chest and I'll have to continue with furosemide until it comes out.

This morning I did some crocheting and wrote up a blog post, then after lunch, we had a trip into Sutton to get Lauren's birthday card and a couple of warm, long-sleeved gym tops that will accommodate my arms, then Mommy actually took me to the gym. I was there until about half past five, and I noticed a disturbing trend developing among boys/men of having their hair shaved at the sides and a teeny tiny ponytail on top. They look ridiculous, and I can't even imagine how they look when it's not tied up.

Tonight I'm going to have to try and relace my trainers as Hamilton has eaten part of one lace and I can't get it back through the hole. Bloody hamster.

The 17th of March.

UGH fuck I hate days like this. I didn't feel like doing much so I've had a rest day, just finished off the elephant I've been doing, bunny next. But that is not what has me upset, obviously.

Igor rang earlier to say he'd spoken to Andrew, and he is very reluctant to do a stent because photopheresis is only expected to continue for several more months, not years. Apparently there are long-term complications. Also, they expect me to have a normal lifespan. This is news to me. Frankly, I'm not sure I want a normal lifespan because if that happens, who is going to take care of me when my parents can't? I'd rather kill myself before it got to that stage. I hate to say that but it's true. What am I supposed to do?

Anyway, there are other issues. Clearly venoplasties are no longer effective, this line isn't working properly anymore, and it looks like my skin is flaring up but we can't confirm that until all my blood vessels recede from the surface. I suspect it has though, as my fingertips and toes are increasingly sensitive, just like they were in Paris when it flared up then. So I might have to go back on steroids which would be a fucking horrific prospect. Joy.





 

The 18th & 19th; I have literally just got my face back.

The 18th & 19th; I have literally just got my face back.

The 14th & 15th; I cannot believe just how lucky I am.

The 14th & 15th; I cannot believe just how lucky I am.