I have a lot of mixed feelings on life right now. There are those positives I do and should feel, but right now the negatives are winning out. As an example, I’m basically in support of Obama care, because I know we need to help those people who do not have insurance. However, Obama care may indirectly hurt Phil and me, because our co-pays may go up, and they are already high. When one goes to the doctor once or twice a year —or even once a month — our co-pay amount doesn’t seem like a bad thing. Phil’s dialysis is three times a week, and we don’t have any deductible in which after paying so much, it goes to 100 percent. This co-pay amount is required of Phil at least 3 times a week due to dialysis. On top of dialysis, there’s physical therapy appointments for the neck/back, there were appointments about his circulation and finger earlier this year, and now there are appointments about a wound he has on his leg. We haven’t even discussed the transportation costs involved in some of these appointments. He has to take Metro or a cab, because there are no bus routes which get him close to the majority of these centers. He probably should be getting a new prosthetic leg, but even the twenty percent we pay for that is no small amount. We’re also still awaiting the bill for 20 percent of the hearing aids he needs. Oh there are things for healthy people to do to lower their insurance premiums by doing preventative things for their “health bank”, but for someone like Phil — who sees a lot of doctors and has a very complicated case —, doing these things is either not possible, not productive, or extremely difficult. And we have GOOD insurance!!!
Frankly, I see a therapist in no small part to help me deal with a lot of the things I discuss below, and my psychiatrist monitors my medication for depression. I wish I could skip these things, but they help me stay above water most of the time.
I am grateful that Phil is still with me. At the same time, I’m angry and anxious about how all of these medical things continue to affect not only the financial end of things but also other aspects of our lives too. Phil went to dialysis this morning to get it out of the way. Dialysis went OK, but the Metro van was too warm. That in combination with the motion made Phil so motion sick, he hasn’t been able to get out of bed the rest of the day and may not be able to do too much tomorrow. He just has to sleep this off. There goes his weekend and any possibility to do anything remotely fun. We were supposed to go out to eat tonight, and that had to be cancelled. We’ve had to beg off seeing others, because he was just too sick, but when I schedule time out with other people, he gets upset about that, feeling excluded. Other activities we love to do together have brought him pain the last few months. He’s going to physical therapy to work on reducing the pain, but there’s one more limitation. I’m a home body and that’s probably a good thing, as travelling is such a stinking production between packing my sleep equipment, stuff for the dogs, and the stupid expense of it all. BetweenMixed Feelings, but Negative is Winning. missing work and the things which would need to be put in place, his leaving for a “vacation” hasn’t been much of an option. He did manage to go on an afternoon trip yesterday to see and hear a lecture on some sacred Dakota Indian sites here in the cities. I was perfectly OK being here to make sure the volunteers had what they needed for raking our yard.
A few minutes ago, he woke up and vacillated between moaning, cursing, and screaming. This is not an uncommon occurrence at our house — either when I’m sleeping beside him or awake in another room like now. There’s absolutely nothing I can do in these situations. Often it’s a cramp from dialysis or some other pain. It would probably help if he ate or drank, but even sitting up when he’s this motion sick and nauseated is an ordeal. A friend wanted to come in and talk after church tonight, but because Phil probably was still in bed, I didn’t think it was a good idea to possibly disturb him. The other reason I didn’t invite her in is that I didn’t want her to witness one of these frequent episodes. They are distressing enough for me without having to put someone else through it. She asked if I wanted to go somewhere, but if Phil wasn’t up, I knew I had to take care of his dog. I couldn’t have called to talk to him about it, because that would have disturbed him and made him angry.
The thing which scares me the very most of everything is that one day; he’ll wake up and decide that going through all of this is just not worth it anymore. It would be the hardest thing ever for me, but if I even attempt to put myself in his shoes, I wouldn’t blame him.
Then there’s all the guilt I carry, because sometimes I just get so angry with him for things which are obviously not his fault. At other times, he is understandably angry, fearful, or both about some of this, and I’m the perfect person to take the brunt of it. I also have a lot of guilt because I can’t make things better for him. I don’t know how he is going to feel, want or even be like when he gets home, so it’s hard to plan ahead. There are times when I feel that I am simply not enough for him and am probably adding to — rather than alleviating —his burdens. Nobody get any ideas I’m going to commit suicide, because frankly I would never willingly leave him alone. I don’t want him to leave me, so why would I ever do that to him? Still there’s no small part of me that wishes God would just take me home, so I could just be done.
We’ve been fortunate that up until this year, Halloween hasn’t been affected by health stuff. But Phil has dialysis that night. I remember him telling me about some of the kids’ behavior when he was here alone when I played at the Malt Shop. Kids reached into the container and started helping themselves. I’m unsure whether I want to try to do this myself, because it makes me feel vulnerable to antics like this. We’ve always looked forward to Halloween, because it’s the one time of year when people in our neighborhood actually talk to us. I have book club that night, and theoretically, I could use that and the cost as and excuse staying on the phone and turning out all the lights.
It’s hard to write music that anyone would want to hear when feeling like this. Sometimes I can write really affective music when I look back at some of these things, but not while I’m feeling them. No one would want to hear how all of this would sound, and most importantly, there’s enough crappy noise masquerading as music in the world without me adding any more.
It’s also been a time of dumb mistakes. I thought my piano was being tuned this Monday, but the tuner called back and made sure I knew it was next week. I also took and posted a picture of what I thought was the piano keys in front of me, but it turned out to be the area between my legs. Thank God for friends who tell me these things and help me remove the photo!! One day I’ll laugh about it, but tonight it just isn’t funny.