Forecast: some chance of sun, a cat visit and loot from Hawaii.

I want this blog to be honest about what goes on. Something happened today that made me want to hold back. That's because I had been hurt so often before that I did not want to tell anyone.

I worked last night until past 6:00 am, then got back up at 8:00 am and went to see a new GP in town to see if I could be a new patient. I do that almost every other week and I am almost always rejected, or worse, accepted for a week, or until they realize that I have over a YEAR of catch-up to do, that the complicated, medical reports are nothing compared to what is right in front of them. Then I get the letter or phone call tell me that I am no longer a patient.

So when this doctor told me that she was my doctor of record, that she could tell when she came in the room I had marfans (asked intelligent questions about it), and wanted to know the name of my condition. I knew the rejection came next. No, the statement that she will look into it and find out what she can do and what she needs to refer. I showed her my blue finger tips, she wanted to know what I did. Linda showed her the concentrator. She wanted to know if it didn’t work, if my saturation was still to low. I thought, “Well then I die!” but said, “Oh I go to the hospital” (to the ‘magic ward’ where they can make oxygen conversion in the lung happen), and Linda said, “We have a larger concentrator at home.”

The GP wanted to know if there was (emotional) lability with this condition. I haven’t had a GP yet who knew that emotional lability (fast and intense emotions) was a sign of a neurological disorder. Linda said I had ‘Sundowners’ (a type of depression which occurs at night, mostly in seniors and those with certain parkinson’s related diseases – hence Sun Downer’s – the play on words). She knew what it was and was sympathetic. She said to make another appointment. She said to focus specifically, and that I would get 15 minutes not the 10 minutes each time. I asked her, “Are you my doctor of Record?”

“Yes, yes, see you are in the orange files already!”

It is too much to believe, so I don’t. I have been here before so often to have the phone call or communication a week or two or a month later. But it seems I have a GP.

Later I may just add this GP to the others who rejected me. She has a husband in Neurology. I am trying not to hope that this is the start of treating my illness, because it could be. I apologize that being brutalized by so many others, made me ashamed to tell you I got accepted so I would not have to face the shame of telling you I was rejected.

For Linda and I, before this happened, the night before, the afternoon before, we had, with one sleep deprived person to a fearful and in pain person worked things out. We have a future, we have an us.

I will still die, but hopefully not before New Orleans. Either way there will be an 'us.' I spent two days trying to temp as Linda’s life: managing the finances, Beacon home Support, VIHA, all the different agencies and looking after me too. It placed me at the edge. I need caregiving because I am unable to care adequately for myself. For two days, I burned myself up trying to care for two.

today I ate for the first time since Tuesday eve and was violently ill. It seems food is something I need to be reintroduced to. I worked for two days to get Beacon to be okay with sending overnight workers. So after 10 months, Linda will get rest, and have regular rest, I hope. Beacon and I are okay. But with VIHA, I found that the supervisor openly stated she was discriminated on the basis of disability, and would continue to do so, opposing all care recommended by doctors. Illegal yes, but who will enforce it. I told three newspapers, the head of the ministry of heath, the head of spin for the ministry, then all the BC agencies I could think of from the Parkinson’s society, MS society to Rick Hansen and the BCPA.

If I have to sue her, and her boss, then I guess I have to sue her. But she not only made Linda cry, but admitted to it the next day, and when I asked what she had done to improve the situation since then, she said nothing. I asked if that was VIHA policy or hers, to NOT act or investigate after people break down in tears? She hung up on me. I don’t think I’ll be on her Xmas list.

Never the less, I NOW understand the need for Linda to have time for herself. While Linda understands that we need to spend time together; that she needs to do the ‘doing’ but the important stuff is us ‘being.’ As for me, it almost looks like a forecast for sunshine ahead.
I sort of missed Halloween, which is sad as I was all ready, I mean, a good Goth is ALWAYS ready but the tension and fear of late sort of put Halloween in the back seat. Too bad, I was wanting my Victoria Francis Gondola ride.
Tomorrow we are off to see cats at the shelter, I hope. And then a little stop to do some specific shopping. A plushie for Linda, one that is hers, not mine, but a special one made just for her (I showed her pictures…she picked the most expensive one….typical Linda!). Then maybe I can convince her to help me buy an apron. “Are you sure we are supposed to be trying on the aprons in the bedding department?”
“Oh yes, most definitely,” I will assure her.

In Hawaii, we got loot, I got loot. Writing a blog a day, and getting the feedback, the readers became family, aunts and cousins, all who I I needed to find something special to bring back and share the trip with. The loot wasn’t for me, but I admit, but I did have fun shopping for it.
I take that back, as in the Honolulu Sanrio store I found a 3-D Hello Kitty in Hawaii Photo Album. What better way to remember any trip but through the mind bending lens of Hello Kitty?

In the Japanese department store, we found not only many Hello Kitty exclusives (coming tomorrow I hope) but also Washi, the first real Japanese Paper Washi since Kyoto. The workers there were from Kyoto, many of them and talked about the paper. Here is the ONE stationary set (there were four but I could only afford one). Each page is wood block printed onto watermarked paper. I wish I got more. The paper is so thin, and so pure it shines. Each page has the cherry blossoms and the sun, with a paper behind to help write (it is up and down as this is Japanese of course). I want to frame each page, not write on it.

Here are some bath crystals I got in Hilo on the Big Island, like most things, they will end up in the post. There is no bath long enough for me, and I have a shower bench in it. But others I hope will enjoy them. Shopping for others is fun. It is about trying to figure out what someone would like best of all based on what you know of them. Ahh, tomorrow I hope to show you the ‘For Japan sale only’ things I bought in that department store (Besides lots of pocky and lots of Melon Soda).