Linda said that if she were blogging then she would write about the delightful smell of the freshly mown grass she passes by as she rides her bike to work. I pointed out that I did not start blogging so people across North America could hate me.
Linda and I were both in a cycle of exhaustion, frustration and endless energy which seemed to go nowhere. After my health completely crashed today, I broke the cycle, mostly by going to bed and not waking up until I was in heat exhaustion which then meant I spent plenty of time doing little screams in the bathroom, and twice lost swallow ability today. Anyway, after all of that, I was able to mentally step away from the “trip planning” vortex and be glad for what we have: which is a fully functional trip to Japan (if two able bodied people were going). Today, after over a month of fiddling about, the Japanese oxygen company suddenly said, “Oh, we’ve decided we can’t help supply you with oxygen.” Which put us back to paying $1000 for three weeks rental of a concentrator and HOPING our insurance will pay some of it (we need a REALLY good note doc!). I don’t like going into debt like that but with so much already invested, we are going, one way or another and we will do what we can do, one way or another. Got to work toward the best, but accept that it may not happen. We have found out today that OUR oxygen supplier here in Canada also supplies Japan and so we are going to contact the North American head office and see if they can bypass some of emailing back and forth and get a commitment to supply us with oxygen.
Tonight the new night worker starts, which is good because Linda is exhausted. If only I hadn’t had another major attack which left me unable to breathe in my position and swallow. So Linda showed the worker how to move me around. Hopefully next time, Linda can go to bed earlier and the worker will be a bit more hands on.
I don’t really have anything to say except that a) being sick from minor to major sucks for anyone who is and b) that a good friend who I have never physically met is going through a hard time medically and I wish there was some magic cure or thing I could do or say to make that “Difference.” So, if anything, she has helped me understand why reading my blog can be hard for people, because caring about me is a risky and painful thing. Because I will have up days but more often down ones, and that is just the way it goes on. But I’m going to keep blogging on, even if I am a bit late on deadline. You get the sorrow, you get the joy, you get the frustration you get the exultation: that’s the deal.
The bad news is that what the heart holter was supposed to record today it didn’t that much so I will need to redo it, probably in late April or May. Also bought a vest recommended by the North American MS society, which is…like everything medical, freaking expensive, it is the Arctic Cool for $189. Hope we get some of that back on insurance too. I gave Linda my entire savings today, $380 for her to buy more yen (A total of $900 I have contributed). So I still need to come up with $600 for my “half” of the trip (more like my “third” or my “quarter”!). Oh well, still it was good to actually to hand OVER money instead of just getting a list of how much I am costing, specially as I found my super-secret emergency fund of $80 that I had forgotten about. Didn’t get to do any ebay stuff today (the sleeping, the passing out, the bathroom, yada, yada) but tomorrow is a NEW day and you know what, I AM going to one of these days, get the time to do a sale and then I will have MORE money to put into the pot.
If you have reached this point in the post, thanks for hanging with me; these are tough, dull, drudgery days and I promise to be more interesting soon! I do happen to have a ice pack shoved in my bra, boosting me up to DD’s (woo hoo!) if that interests you? Will keep heading on toward the dream (and remember it isn’t a nightmare; because hey, if I am passing out, I will be passing out in JAPAN, next to the ancient capital and on the pathway where samurai used to walk on their way to the palace. See, even getting ill can be interesting in Japan!).
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