I have a great need to say something positive on another day which wasn’t very positive. Actually this post was going to be about rape, and how the new home care agency is sending men to female clients (for the first time EVER) for showering and intimate changing UNLESS you specifically have “been raped” added to your file for all workers and schedules and managers to see. And maybe I will talk about that another day but let’s talk about squirrels instead. Actually, though this weekend I fed a few squirrels that seemed to recognize me, every time I would get a few squirrels together, one would start chasing another, and then they would end up going up a tree together. There was something going on as for once, some squirrels were finding OTHER squirrels MORE interesting than peanuts. Sheesh, what is the world coming too? (Linda says it is called “Spring”).
Cheryl was visiting with a friend M. from Port Angeles. Both of them are Rangers and both are EMT’s (and M. is actually registered to run into burning buildings. I don’t know exactly HOW you get on a list to register to run into burning buildings as I have often been STOPPED, but if you know, please let me know, because that sounds like a kick-ass certification to get). They helped me feed the squirrels (see first pic) and then we wandered down to the IMAX film I talked about the other day. When the usher came to get me, I had this whole group traipsing after me, so I was: “This is my Caregiver” (Linda), “This is my heat exhaustion EMT” (Cheryl), “And this is my generic Trauma EMT.” (M.) On reflection, I am quite surprised we were allowed in at all, normally having THREE medical people for one wheelie is BIT much. Afterward, in the spirit of heading to Japan, Linda got a picture of us after we had been saying rude and likely sexual things in front of the Cherry Trees. I am not certain if this is how one is supposed to view the cherry blossoms in Japan but it seemed pretty good for us. (click on the pic to blow up and see all our leers)
Today I went to get my hair cut and dyed, which was an exercise is humiliation and frustration. First because, all I ask is that my hair be pink, as in Anime and Manga girl pink. I am after all going to Japan and after MUCH viewing of Anime, I have determined that I need pink hair to blend in with the Japanese population (either Pink or blue hair). Also, I wanted to take a sword and look like Utena (a lesbian anime character who fenced people and had pink hair). Well, I packed the camera to record the whole process including making my head a giant pink cone. But I left the backpack (with the camera inside) at home. So sucks for me. Anyway, here are some highlights:
Me: “Now don’t use any discouraging words but since my thyroid is dying, can you notice any thinning?”
Stylist: “Don’t ask me why, but I am NOT doing layers at this particular level at the back (lower side of my head), just trust me on my reasons.”
Me: “What does that mean?”
Linda goes and looks, “It means, do you want a bald spot or not?”
Linda: “Then listen to the stylist.”
Me: “I thought you told me I wasn’t getting thinner.”
Linda: “I told your hair looked just as full…..as the last time, that doesn’t count over six months.”
Me: “What? That makes no sense. So it WAS getting thinner?”
Linda: “I think you are overheating, you should have a drink.”
Stylist: “OMG! I have turned your scalp pink!”
Stylist: “No, I mean, really, really pink!”
Me: “Good!” Sees self in mirror, “Okay…..yeah, that is really pink!
LATER – as stylist is blow drying hair
Stylist (to Linda): “You need to come here.”
Linda goes over and they look at my hair
Stylist: “It didn’t take, some of it took but some of it didn’t take at all. I’ve never had this happen, it must be the thyroid.” (talking about the hair changing colour)
Me: “What, put something else on! Make it pink!”
Stylist: “I put something else on and you have NO hair.”
Me: “And if we bleach it?”
Stylist shakes her head (I bleach and...no hair left).
Me: “So I have……red hair”
Stylist: “Well, there is red and brown and copper all mixed together but no: there is no pink but a deep red.”
Me (not quite in tears): “Suck!”
So, I am NOT going to Japan with Pink hair but reddish hair, a darker red than before and hopefully it says, “I am punk crazy and my dangerous sex appeal with corsets overcomes your odd prejudice about wheelchairs” instead of “I am a mature confident woman.” Because quite honestly, that last statement is the LAST thing I want to project. Here is a pic of me and the hair (the hollow look is partly due to the hair and partly due to not getting enough sleep because…I had a new night care worker)
So, yeah, had this new night care giver, which is always a bit of a stress. On the plus side she didn’t freak when I couldn’t speak. On the down side she doesn’t know how to use oxygen tanks (just like the last one) and she sleeps….a lot. I am starting to realize that most night workers come and expect me (and them) to be asleep by 10:30 pm (the seniors for clients). Only I go to sleep at 1:30 a.m. I figure if the night person is getting the same amount to just sit and read and make sure I breathe until I go to sleep as the people who come and do my laundry and make meals, then they should…stay awake. I noticed that my night worker had stopped coming to check on me, and eventually, wanting to go to sleep an hour later, I went looking for her with my wheelchair. I found her in my bedroom with the lights turned off fast asleep. So, I waited while she woke up and talked her through the various “going to sleep” tasks….several times. At one point I waved my hand in front of her face and called “Hello” because I think she had gone back to sleep (she was supposed to shut the bathroom door and instead stood in it swaying).
Because I talk so much about my care, many could think that I get a lot of care but for daily care, I average about 7.5 hours a week. I am allotted the maximum of 120 hours a month. But because I have problems getting into bed and GOING to bed (Bed is where the PAIN is), that puts a strain on Linda to help me and do her job and the overtime her job requires. So after Linda burned out I changed my hours so about 75% of my home care is in making sure that Linda gets at least two good night’s sleep between Monday and Friday (three if there are extra hours). Any booking of an “overnight” is 10 hours, so at 4.5 weeks a month that is 80-90 hours with 7.5 hours a week during the day making up the other 30. It is just: with the new workers coming (and me having to train them), it gets a bit tiresome as THEY and Linda often get more sleep than I do. But once I find some regulars hopefully things will go back to the efficiency of before. But, to get the extra hours for night care, I cancelled some evening work and added assisted showering to meal prep, and cancelled one day entirely so not everything gets done. This is why, as it has been since March 1 when Beacon took over, every time I am told (daily) that my care is changed or reduced or not coming, that means no shower, or meal as well as a load of dishes or clothes that just…wait. I am not complaining (well, except when they don’t show up or are not competent), what we have works. It is just I think people think I get a LOT of care during the day or evening and that isn’t the case. I have a volunteer which goes to boxing with me (10 pages of liability wavers: no, not joking), and a worker to dress me. But otherwise, I am in the bed or in the wheelchair or in my computer chair. Which is where you see me with my NEW pink scalp and fairly reddish hair.
Um, that’s it. I know a lot of people don’t have care and I am glad for mine so I can use it to make sure Linda doesn’t burn out taking care of me. I am fortunate and acknowledge that (but also can lead to some times where I am literally stuck due to a cancellation, and Linda has to come home from work to give me a shower – which is less than self affirming). The good news is, I am going to have a slightly pink shaded pillow tomorrow! Hope your time in the hair salon goes happier than mine (as I sunk my head to the Stylists table and said, “After everything that has stopped working or is messed up in my body, don’t you realize that is WHY I want pink hair, and now you are saying MY HAIR is messed up too.”)
Oh well, we move on, eh?
1 day ago