Thursday night is...BOXING NIGHT! And getting run over by a truck.

It was Thursday night and since I was no longer in excruciating pain with a completely twisted back (just sort of twisted, my spine is no longer UNDER a shoulder blade), I decided it’s BOXING NIGHT! Hey, just because one system has failed doesn’t mean I need to abandon the rest (get the sweat going, the micro-capillary and cardiovascular hopefully). It turns out that Boxing finished last week and is on a break, which means empty room. But no problem, I came to sweat, so I put on the tunes of something really fast (Paint it Black was in there) and did enough rounds of two and three minute shadow boxing until I started to get a sheen.
“This one is going to crack it!” I told Linda and started a final three minute shadow boxing trying to keep up a speed of four punches a second; that didn’t last for a minute. Then it was 2 punches a second with the attempts to punch up, to hook, to do up and down combos, double jabs, the whole thing and yes, I did not glow, I DRIPPED. Which means victory, but also extreme and unbelievable pain, but hopefully for only 2 or three days. It also means I won’t sleep much tonight but will hallucinate a lot (it isn't as fun as it sounds).

Still, wanted you all to know that just because I know that one system seems to be uncorrectable does not means I am giving up on the others or myself; this is how I stretch time and if the cost is pain, then that is the cost.

I, of course, could have stopped there (should have?), but hey, I’m E.F.M. so I got the mats and did 40 sit-ups with combo punches at the top and finished with 20 push-ups. You can see me here, totally wrecked and spent, but with that, “I DID IT!” look on my face. I pulled myself back into the chair and in the next room there was one guy shooting with a basketball.

I haven’t done basketball since in the chair and so I asked him if he wanted to play HORSE (One person shoots, if they get it in and the other person misses, the person who missed get a letter: H and then O and down to E where you lose). Well, it turns out that I cannot with all my body and arm get that ball up there with one arm. And only some of the time can I even get it near the rim with two arms. It was the distance, I just wasn’t strong enough to throw a one or two pound basketball that high. So, I lost. Haha.

I said to Linda on the way home, “Well, now I know not to try Wheelchair Basketball.”

The next block, “I should have done that last year, when my muscles still worked.” (It looks like I have muscles in the pics, but often I can’t hold a full gatorade, or specifically pull it from a distance to my mouth without dropping it or not even able to move it, I guess this is what the nerve loss means).

This morning (Thursday) I woke up with my limbs rigid, and that started to spread. “Get Linda.” I told the night care worker, luckily she was a LPN and was not freaking when I went into a Grand Mal, and then later into another one. Linda says my eyes were dancing all over the place independently (which sounds kinds of interesting to watch, except I can’t because I’m the one doing it and see nothing), before rolling into the back of my head and I had another seizure. After my muscles finally calmed down and I went back to sleep, I woke AGAIN two hours later with the leg cramps below the knee (any ideas what is going on with that - three days now!) and the feeling that a truck had run me over and dragged me a block, before backing up over me. Turns out Seizures AS sleep is not actually very restful, and kind of hurts.

So I had a nose bleed all today. I spent a great deal of time trying to get past the gatekeepers at the Victoria Hospice Society and the VIHA Home Care Nurse. The Nurse’s response to things like, “I wanted to let you know I have TIA’s and I am on oxygen 8 hours a day and still have blue lips” was “And why are you telling me?” Well, because she is the only person who can do a hospice referral, after only after she does a home visit, but she doesn’t want to DO a home visit and said she didn’t want medical records, didn’t want the home care staff calling her during TIA’s or larger strokes or seizures and that I should just go to my GP (and leave her alone). Ironically she is supposed to be the "medical back-up" for my home care workers to call if there is a problem.

I told this to the Hospice Society (who sent me to her first) and they told me my GP had to do it all then. I told her that since my GP was getting a bit swamped due to all the specialists quitting and dumping it back on him that The Hospice services like pain control and counseling could help. She wanted to know if I needed pain control. I said yes, I also explained why I don’t think an RN could spend 10 minutes to determine if a 1 in a million presentation of a disease is in the palliative stage and I was just trying to register with them (as their web page said you could do up to a year in advance).

She said she could do something about the pain control, told me she was transferring me to the pain center. I waited as the phone rang, and rang, and rang, and a voice message told me this was the radiation department for the oncology department.

I can’t tell if she was pissed at me or that was a genuine accident.

Linda spent hours on the phone trying to get things like an oxygen concentrator and we have a meeting next Thursday which will determine IF we get the right note for the concentrator or not. So a little stress. Also the same meeting I will try to get a Respirologist. But I did my boxing, and now my hands are shaking so I better go. Fight on!

Also, this is one screwed up town. Seriously. The good news is that they guy playing me Horse thought I was 24 or so. The bad news is that Linda got asked if the medical equipment she was asking about was for her daughter (ouch!).