The Swollen Brain Diet
Sorry – very late post. Having a much tougher time with the IVIG this round, tougher even than the first time. Seems I’m one of the 7% who don’t tolerate it very well.
Apparently I am still susceptible for the brain to swell enough for it to be classified as Aseptic Meningitis for around 72 hours post transfusion. Even if I don’t get full-blown Meningitis this time, these bad headaches I’m experiencing can last for five or six days. That means I have until basically the end of today until I’m pretty out of the woods for the big one. Doesn’t matter too much, I’m quite sure I already have significant swelling – just not the epic brain mashing against the skull pain like last time. I’ve been quite feverish, with headaches hovering between 5’s and 7’s out of 10 on the pain scale, since last Wednesday, I have plenty of nausea, vomiting, dizziness, everything is sore and achy, joints, back and neck. Yeah I know it sounds terrible but it’s one of those situations where theoretically – the benefits outweigh the risks, I go through a few days of bad times and hopefully when I come out the back-end, my Myasthenia is not a factor for a few weeks…. I need to be strong for next friday. It’s just not an option to come out of surgery and be further hindered in my recovery.
I’ve been pounding back the Tylenol and Advil and kept a steady stream of cold packs on my neck and head. So far it’s been pretty significantly damn unpleasant but I’m managing. There is a positive… I can’t eat because of the pain & nausea so, it’s a half bowl of soup each day and that has been pretty much it – so I weigh like 13 pounds now – give or take… Maybe I’ll write a diet book as a result of my experiences, the Swollen Brain Diet… I could franchise like weight watchers and have people come over to your house and hit you in the head with a baseball bat until you no longer felt hungry…. saves the cost of the IVIG and any other possible side effects, you just get the brain swelling and RESULTS… get that beach body you’ve always dreamt about…. fit into those jeans you wore in high school… make your friends jealous….
I can tell it’s not quite as bad this time, because I don’t have the photosensitivity and hyperacusis and I certainly don’t miss either of them. Seriously though, with all the pre-meds I had before this treatment and the fact that they gave me less immunoglobulin and slowed the intake rate and still this is happening, means that when my neurologist comes back (she’s on vacation)… well… I don’t know what it means. I guess it depends if the side effects are worth the results. Obviously, any time your brain swells it’s not acceptable, except morons – I can see some benefits to morons having their brain swell every so often – but this IVIG is one of the very best tools they have against MG, I still haven’t had my first Plex treatment yet – but that is a possibility as a treatment if IVIG is no longer viable. Then there is always the Devils Drug they can use but I am just staying away from that until I have no other options, total last resort.
So hopefully I get through tonight and all is good and in a couple of days – the headaches mellow out and I get a couple of days of relative peace before the pain and drama of Fridays heart operation and the recovery from that becomes my constant companion for a couple of weeks…. then a couple of weeks after that, it’s the PLEX and then the big operation…. summer, what summer?
Ahhhh… don’t be jealous of my glamorous life…. there is an old saying that god only gives us as much of a load to carry as we can handle…. I’m telling you right now, that quote was written by a moron…. and if they were still alive I would send my new Swollen Brain Diet Crew over to beat some health and weight loss into him.
Have a Great Day