Thursday, February 6, 2014


  It was a long day, seemed like everything kind of crashed together, and some things didn't have to. I was tickled that mom's equipment came in today, until I saw the bed. The 2 young men that delivered it and set it up were nice, which was a plus, but then the bed. I mulled it over back and forth, talked it over with mom and she thought the same as I did, it should have wheels. Kind of flimsy looking too. So I started what seemed an endless search for who was in charge of mom's Hospice service to request wheels. The whole bed seem to snap together so it shouldn't have been a big deal to add them but it seem to grow into a big deal. For that matter, figuring out which division mom comes under. Meanwhile I was all everything is great to mom, she never suspected a thing. We still aren't sure who supplies what, us or Hospice, but if mom comes home tomorrow we will be. A lot of the day was spent fighting over a bed.

 I spoke with Pulmacare (spelling ?) and they would not provide mom a bed with wheels, a guy named Mike said they didn't supply Hospice patients with beds with wheels, but they did have them. Hospice said they thought all beds had them while this guy said not for Hospice. He was rather belligerent over the phone and I guess thought I was just talking when I said I would get them to look elsewhere. I never threaten. I called McFarland Medical, who said they supplied beds with wheels, but would have to have an order from Hospice. I told them expect a call. The lady over mom's division of Hospice was nice and when I told her Pulmacare wouldn't but McFarland would, then called to have them pick up their stuff and was ordering mom's equipment through McFarland Medical. Tracy had our backs on that one and understood when I told her it would be better to have one that moved to clean up in case mom had an accident. Shortly after Tracey's call we got a call from a lady at Pulmacare, asking if we would be available to swap out the beds. I told her they could call and come after their stuff whenever, but it needed to be gone before the new company brought their equipment. Then she said they wanted to swap beds, if that was ok, and boy how I wanted to say no. I told her that with Mike's asinine attitude that Hospice was changing over the order and that it was up to Hospice, which the lady said she left it up to you. Due to the nice young men who brought the equipment, I agreed. Note this: If I had based it on this guy Mike's service and distant attitude I would have said no. If it was that Pulmacare wanted to do the right thing, when they were forced to, I would have said no. I got respect for the fact that McFarland Medical was doing the right thing for their customers because it was the right thing to do. As for Mike, I hope you will come upon someone like you when you really need something, maybe then you will become a decent person.

  Meanwhile, tonight I try the new cream Denise found that we had left over from God only knows what. I read about it last night, ain't crazy about the side effects, just worn down. It is called Triamcinolone Acetonide Ointment, and still in date. I looked it up and it is used for many things, of which is NHL, CTCL. I am at the itching that can't be ignored in some places and into the pain in others. It is the worse I have had an outbreak yet, over 75% of my body, so if this brings some comfort so be it. I go the 21st to see a new doctor Sally recommended, she has the same kind of cancer. Its in the T Cells so not a whole lot I know left to do, and Sally is not only a victim of this, she is a retired nurse as well, and has had it longer and at a more advanced stage. I didn't hear from her last night, the night before last she was sick and had a fever, if she don't email me tonight I'm officially worried, more so than I already am. We have been friends for years now and I briefly was friends with her late husband, who also had this stuff, and a retired doctor. I know she has an appointment with Zic at Vanderbilt soon, just don't remember when. I like Zic but that is a long drive so I'm switching to a doctor at UT.

  Been a long day.