For all of my ranting and raving about the price of car keys, gas, milk and cup holders, I know it’s just money. Some of these items are a luxury (i.e., a beeper key thing) and I could choose to not get them if I really was that offended. Or be a better planner and not lose/break them in the first place.
But get this. I just received a quote from a certain DC venue for our upcoming press conference. A hard line Internet connection is $250, wireless hand mic is $170 and a 50′ flat screen rental is…$650! Can you believe this? I know I sound like an old woman posting two consecutive entries about the cost of things but something is seriously wrong here. I just checked online and found a 50″ Samsung LCD for $532. To keep in my tiny basement forever. Or I can rent one for an hour for $650. I was told that is a “reasonable rate” for the area, but I think that is just crazy talk. Seriously crazy talk.
Want some more crazy talk? No, it’s not about the plastic bags once again hanging from the trees outside (though you know I already called my boy Proco Joe Moreno AKA Ward 1 Alderman about them). How about all the work we put into getting Ho-Ho on Copaxone and she is unable to give herself the injections. Clearly I don’t fault her, but I am still frustrated. The nurse sent out by the pharmaceutical company (for the second time) told me that Ho-Ho tried to inject the top of her hand today. “What if she hit an artery?” she asked. “Can you imagine? “I can and it’s a horrible visual. She also asked Ho-Ho where she tried to inject herself yesterday (she ended up injecting the rug) and mom first pointed to her hand and then her arm. She couldn’t remember. And she forgot about the dry-erase picture put on her fridge labeling injection sites for each day of the week which means we risk her injecting herself in the same spot twice in one week – a big no-no in the subcutaneous injections world.
I had the privilege of calling Ho-Ho to give her the news that the nurse “doesn’t think this will work out” and as you can imagine, it didn’t go over well. It actually went over the opposite of well. She yelled at me and told her she can do it with no problems and that I have no faith in her. That she “just won’t take any drugs then.” That will really show me. I told her that the Copaxone-paid nurse has a vested interest in keeping her on the drug and is telling me that Ho-Ho can’t manage it because of her short-term memory problems (I was obviously a bit more diplomatic in my delivery.) But because she has little insight into her disease, we ended up going in circles. I could hear my voice rising and realized I had to end the conversation (my new project is to stop yelling over my mom. Noble isn’t it? Ugh.) I called the nurse back and gave her a heads-up about the shitstorm headed her way and will sit and wait to hear back from the neurologist. I feel so powerless. Like I have to do everything, but can’t do anything. That doesn’t necessarily make sense; I just wish I could talk to her sometimes and that she listened…not just heard me. I also wish she would listen to herself. But as good ole Eleanor Roosevelt said, “It takes as much energy to wish as it does to plan,” so here we go again.
Another MS treatment option is Avonex, but Ho-Ho is vehemently opposed to it for no apparent reason. Funny that she is now such a proponent of Copaxone after being against it for so long and not doing any additional research on the drug. So after our “child development” class tonight I plan on jumping back on the research wagon. As of now, all I know about Avonex is that it is intramuscular injection that is administered once a week and can be given by the in-house nurse at OPA. I will be administering a steady stream of white wine to myself as I look around the Interwebs for side-effect horror stories. Cheers.