Nervously Freezing My Nuggets Off…

I always feel bad when I don’t post the night before because I realize some people check first thing in the morning and I can only imagine the crushing disappointment at not being able to start your day with the spicy breakfast salsa that is my blog.

Generally there is a reason, yesterday was a bit of a rough day. Staunchly conforming to my can’t do anything the easy way policy, what we initially thought was going to be just Jim Dandy after the transfusion, turned out to have gone a bit sideways. Seriously I just can’t understand why my idiot body chooses to repeatedly slot itself into the tiny fraction of people who don’t tolerate these procedures very well. Perhaps it’s because I am such a sensitive, delicate flower with the constitution of Blanche Dubois. Or maybe my body has been so worn down with all the futzing, treatments, infusions, transfusions, surgeries etc over the past years that every single “treatment” hits me like a tornado in a trailer park.

Supposedly there is less than a 1% chance of having a reaction to the Plex, guess what….. Now it wasn’t as bad as it could have been but enough to freak me and those around me out. Had the procedure friday, finished up just after 1PM. Felt wobbly but Ok, tired definitely, a little dizzy and weak but not too bad. Got home took it easy, snoozed in and out through the afternoon and evening. Had some dinner, went to bed . Woke up around 8:30 Saturday morning. Felt OK, a little cold but my bedroom is on the side of the building with trees so it’s covered from direct sunlight. PLus we’ve been in a bit of a cold snap or, well, cool snap. Eat your hearts out you folks in Ontario with you near 40 degrees and 10000% humidity. Mom is wearing sweaters and jackets, inside…. I refuse to turn the heat on and she’s gone the most lovely shade of blue….

So I go about doing some things around the house, read, eat some cereal, watch cartoons – the usual… but around 11 I start feeling not so good, and am really cold. Incidentally that is when you really know something is wrong with me – I am always hot, hands always warm, if you grab my hand and it’s cold, or if I say I’m cold guaranteed, something is going on. So I was cold and my hands were icy to the touch. Checked my blood pressure, heart rate, etc etc they were OK not amazing but acceptable, BP was low and rate was high but OK…. then I took my temperature – now Normally the human body sits at a nice comfortable 98.6 degrees, but can fluctuate as much as a full degree either way throughout the day. I normally sit right around 99 degrees. I looked on the interweb after seeing my temperature. A low temperature is a much more serious indication that something is wrong – we’ve all had a low-grade fever at some point, a temp of 100 or 102 even is a sign that our body is furiously fighting off some kind of infection but a low temperature means essentially that nothing is working in your body…. The Official clinical guideline for hypothermia is a core body temperature below 95 degrees… mine was 94.1… HUH? I mean, yea I felt cold and my skin was cold but I certainly didn’t feel like I had hypothermia, yet 94 is seriously low.


We thought maybe the thermometry was off or broken, whipped over to the store near my place and bought another one, nope they were both working fine, my body just didn’t seem like it wanted to get started, the core was stalled or something, at least that’s how I thought of it. I really tried to resist the urge to panic, but involuntarily my adrenaline went through the roof and as a result blasted my heart off, so now sitting don completely immobile I was do 120 beats per minute, double my normal. Stress is also like catnip for the MG, so eyes went all west-east and slur was bad… and I remained in that charming, totally comfortable and very restful state for the remainder of the day. My temperature did start creeping up, after I went out in the sun and forced myself to do some walking… now let me try to explain how difficult this is…. imagine you just stepped off the treadmill or a stationary bike, maybe jogged a mile or two and your heart is pounding and racing and you are slightly out of breath and breathing hard – because you just worked out – slowly it returns to normal as you recuperate and recover and within a few minutes you’re back to normal. Now imagine walking into the gym, your heart is already pounding and racing, you’re already all out of breath NOW start working out – it goes against everything your body wants to do…

Anyways, temperature went up and down all day, hit 98 degrees only a few times, spent most of the day around 96, occasionally 97… heart was going, MG was front and centre…. I go back in for a second transfusion tomorrow, Monday morning, so of course I’ll let them know what happened and we’ll see what they say. Then Tuesday Afternoon I check in to the Hospital and Wednesday morning it’s go time. Nervous, yep. I know I shouldn’t think this way but there is about 5 – 8% of people who have this operation and the Myasthenia gets, immediately and significantly worse. Given my track record for doing things the hard way, being in that tiny percentage who buck the trend – damn right I’m nervous. Mysathenia getting worse means I wouldn’t be able to breathe for myself, or use my limbs, open my mouth, open my eyes…. nervous doesn’t cover it….

Have a Great Day, for me… do something today for you – that celebrates the simple fact that you can… because somewhere out there is someone who can’t and would be very jealous of your ability. Don’t waste it before it’s too late.