“Watch out Earl! It’s still moving!”

Using lines from horror shows seemed appropriate. I AM still alive. Though not awake that much, nor have I yet to be fever free for more than 16 hour for now: 50 straight days. I DO REST. I just don’t have the opportunity to totally rest often, as taking my dump of the every other day takes 3-6 hours (not a rest) and usually uses all resources creating a fever. We have found I can ‘safely’ talk about 60 minutes a DAY. More than that or speaking faster than ‘disability Beth time’ makes me use up energy, which often produces a fever, then seizures, etc later in the day. So I am still alive but yesterday overheated while stickering postcards, tried to make it to the door, did not, then dragged myself using an elbow and my abdominal muscles the 30 feet to the bathroom in 35 minutes. Turns out, that was REALLY exhausting as I slept for 13 hours. A couple days before that, I talked a lot, did a lot for seven hours and then….slept for 12 hours. This makes for short days. Still working on that ‘fever free for three days’ thing. Wish I had a counter I could html in here to put in for days like 1, 1, 1, 0, 0, 1, 2!!! – then at three there is fireworks.

To add to further problems, Beacon announced that they will no longer book overnighters for me because…..it takes to much time administratively. That due to my condition and to me a lot of the workers leaving (we were told sort of off the record that people who do overnighters want to sleep and kind of work for an hour, sleep a lot, and get $200, that’s why they do them – I am NOT that, so I have more workers refuse to come again, or quit than I say, “Don’t send”) it takes too much ‘administrative effort’ to try and book someone to take care of me overnight. So they aren’t doing it anymore. This combined with the ‘no GP’, ‘No one will administer IVIG, though approved’, is making me feel less than loved. Where are the hugs, caregiving and smiling doctors of shows and commercials? Is it a human rights case? Sure. Is that going to get me a judge in a week saying that they are required to provide caregivers for me while the case works through the system over the next couple years? NAW! But.....the Olympics are here!

When I say, ‘fever’, I mean, an inability to control temperature regulation or the effects until the blood in the brain is affected. So since my core is usually sent lots of heat, as I lose energy the external cooling becomes less effective, the energy for resistance is gone and I get a fever. If I am cooled, I will lose the fever (and then have like a 94 degree temp or go into shock). So, while it is ‘autonomic function control loss of the Central Nervous system vascular system for temperature regulation’ – ‘Fever’ is usually what happens, so lets go with that.