Help keep this site going.

 

 

mailed to a friend with M.S.




Sorry you haven’t heard from me for a while.  I’ve been v.ill and still am.   I don’t usually mention my ailments to you,  no matter how grisly they seem, they pale in comparison to what you cope with.   In current circs, I’m not so inhibited.

My condition is grave.   I’m currently only kept alive by the shedload of meds I’m taking. 
( I mailed back to a chum ‘smorning, who was complaining abt his sinusitis, that you don’t qualify for sick bitchin’ to me unless you’re at v.least having to inject yo’self daily against having yr blood congeal in yr veins,   like what I do.)

I’d been experiencing episodes of swelling in my legs,  late Feb this turned chronic and in Mar catastrophic.  I was admitted to hosp on 15 Mar wherein I was diagnosed with “Membranous glomerulonephritis”.  A long name and not worth memorizing, unlike its origin “idiopathic” which means “we don’t know where you got it , kid”.   Great, huh ??

The expert opinion is that my immune system has flagged my kidneys as alien invaders and is doing all it can to shut them down and get them out of my body.  Part one of its plan has been pretty successfully implemented.

It’s  a rare complaint, I’m one in a hundred thousand.  There, you always knew I was special didn’tcha ??   I’m not feeling so good abt it m’self.

The condition can be induced by viral attack so I reckon it was a consequence of a horrendous bug I got last Aug / Sept.     That came so close to carrying me off that Pluto is appealing abt the ref and demanding goal line technology.  He was  sure he had me over.             After that I got the first swelling in my calves.

Treatment, when it starts, is to supress my immune system and see if my kidneys recover.  This carries no guarentees.  They want to try me on a novel combination of suppressive drugs they’re trialling .  At the mo, I’m just being maintained because 1/3rd  of people with this condition spontaneously recover and they’d prefer to have that happen before treatment rather than during.  I find their whole methodology suspect and certainly other aspects of their approach have been “slack”.  

I don’t have confidence in them over this but I have no choice.      Which is not a good place to start from.   

At the mo, I’m trying to sit things out as I’m only recently getting days when I have much cognitive function and I want to be clear headed ( I’m seriously missing this) in considering wtf is going on.  I’d also like to talk it over with a coupla people.

I mean, it’s not v.rock ‘n’ roll is it.  Dimebag Darrel had someone come up and shoot him dead on stage.  Whereas I’ve got an immune system that’s become a sci fi movie buff and gone into a phase where it adopts the role of HAL the errant computer in  “2001”.
“I can’t let you filter that D” ...... etc etc etc

What I need is to take a fireaxe to my immune system but that’s not going to do the trick.


I’m in a bit of a pickle.



Back to Home Page