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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10 comments:
You promise to be more interesting? I don't think I could take it if you were more interesting. I wish you boringness, days of predictability and humdrum bourgeois living. May your trip to and from Japan come off in the most mundane of fashions. May your actual vacation there be picture postcard perfect, replete with every stereotypical expected joy you and Linda hope to find.
Of course hang in with you until the end, silly. Gotta make sure you're still breathing. *grin, hug*
The fact that you wrote about the icepack in your bra to throw us a bone made me laugh. Hubba hubba. Maybe you can single handedly start a new fetish.
Also, at least you have one reader in southern Ca who isn't hating Linda about the grass smell.
At least you've done so much of your planning far in advance and worked out as much of the logistics as you can. Japan will be beautiful--and I hope everything goes smoothly there.
May you both get the sleep you need. As for hanging in with you until the end of the post... what Dawn said goes.
Off to research something... talk to you soon.
"...reading my blog can be hard for people, because caring about me is a risky and painful thing."
I'll take that risk, dear Beth, and share the pain and the laughter. You're stuck with me, and most of the rest of this motley team, until the end.
As for the ice pack, I'll just say that I am just not a bra wearer. I can, however, laugh with you.
I also don't have a sense of smell, so I won't hate you. Linda, for the grass smell. I'm just looking forward to seeing grass.
Keep doing what you have to in order to get to and from Japan safely, you two. Post when you can, and remember: we are all behind you.
I am envious of Linda for one thing: she gets to give you all the hugs we're sending. Give her another for me, Linda!
Hanging in there with you!
Wait -- aren't we family? Why wouldn't we stick with you until the end? Isn't that what family is supposed to do? You're not planning on getting rid of us, are you? What would we do without Squirrel-Goddess-With-Wings?
Now, about that tease of DD... You forgot the pictures!
Yanup: Well, I do promise to be more interesting so I hope you took your blood pressure becuase I am actively going for MORE interesting. I do wish however for perfect weather in Japan and since there are no stereotypical wheelchair experiences of Japan, I hope to set the standard!
Dawn: Good one, a nice sick joke to bring the gross reality of it. Haha!
Em: It was literally the only thing least kink about my day, since I could barely talk and kept saying, "DDDDDDDDDDDDDDDD" and the new care worker was going, "Is she asking for help?" and Linda was: "No, she's bragging becuase now she has D cups"
Linda read your comment and laughed.
Frida: Well, this is pretty much more logistics that most countries use for invasions but I think we still have a bit more to go. I have a "maybe" wheelchair as of this afternoon. I hope that I stay conscious, am NOT hospitalized and continue to blog while in Japan EVERY day. (becuase when you get home you never Do write all those little details you experienced while overseas)
Cheryl: Okay, but when you say, "off to research" I don't know whether to be intrigued...or scared!
Neil: Well thanks for taking that risk, because I looked back over my posts are realized that for a while it has been, as Linda puts it, a bit overcast. And because I do look forward to your comments every day!
As for no smell can I say, "Brain op?" only because two of my friends who had cancer brain operations returned without smell (which is odd becuase the two bits of cancer were in different places of the brain).
I will try to post as often as I have internet access, I have a memory stick and a laptop I am taking with me. Pics too if I can!
Linda and hugs: WE said today, "Wow, are we tired or what, we haven't had time for hugs or kisses for like days now...that is really, really pathetic" - so new priority
Michael: No way, I'm here if your here - together yeah! I just realized that sometimes, it isn't always fun to read this blog and I apreciate those who do.
Pics - see, I TOLD Linda we needed more pics when I was in bad shape, but since she is also in "Zombie mode" (needs sleep) she probably forgot.
I'm glad you have decided to go for more interesting. It's just funny that you would think you haven't been plenty interesting as it is. But I'm still hoping for plenty of boringness for you: boring availability of oxygen, boring luggage retrieval, boring loading and unloading, boringly wide doors, boring restrooms (though I doubt seriously that there will be any boring restrooms in your Japan experience). It's getting the boringness in the right spots that is important. That way, you can have the interestingness where you want to put it. It was the very introduction of boringness by industrialization that made the late 19th century so exciting for a lot of people. We use the term "standard" now to mean dull. They employed the word proudly in company names to mean "reliable." Hurray for standard! cried the throngs of people who suddenly had time on their hands to learn to play badminton or could do routine chores without them (sometimes literally) blowing up in their faces. So, I still wish you boringness, and I know you will still bring the fun.
Hey, we gotta joke about our selves/bodies/conditions once in while. Makes other gimps laugh and ABs uncomfortable.
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