News, updates, and happenings with the Kragnes family: Phil, our Seeing Eye Dogs, and (me) Rebecca.

Archive for October, 2013

Small Follow-up to Last Post

I’m quickly writing this in MBraille, which currently has no spell checker. Phil woke up about ten last night, and he was hungry! We ordered an awesome sausage and onion pizza with alfredo sauce and had some ice cream. I still crave the taco bowl from our favorite restaurant and enjoy those “date nights” so much, but talking to him and the yummy meal went a long way toward calming me down. It also really helped me not burst into tears when I found a pile of Zane’s barf with socks on. To add to the fun, it sat right in front of the door where the cleaning bucket for such occasions resides. I had the radio going, and although I’d never say I enjoyed cleaning it up, it was a lot better than if I’d found it earlier in the evening.

I also forgot to talk about small but necessary positives from this week. 1. I finally got Zane to the vet on a beautiful sunny day to get his nails trimmed, and the brisk weather made his work so enthusiastic. Fall is a time for extra sniffing, but enthused work really helps. 2. I think I have the majority of my music player issues sorted out. Not having control of my music on a daily basis makes Ms. Kragnes a very cranky woman. So I should be able to start putting together playlists for shows — right after I write minutes for the Minnesota Braille and Talking Book Library Advisory Committee.

Mixed Feelings, but Negative is Winning.

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.

After An Evening Out: Life Is Evening Out.

Tonight I went out with a group of people for the second month in a row. This is the group which has determined we want to go out to eat once a month. We went to a Caribbean restaurant in my neighborhood called Marla’s, and it was a beautiful night to do it. Marla’s is a little more than a block and just across the street from our house and is my favorite place to go to get away from the house and rub elbows with people in the neighborhood. Soon the snow will fall, and it’s possible that with the snow in the alley and on the street corners, I may not be able to get there. I participate in a social media outlet called 4-Square in which participants check in at various establishments, and I was startled to find that I hadn’t visited this restaurant since last November! Because we need to do delivery so much on dialysis nights (given that Phil doesn’t always know what he’ll be in the mood to eat after a run) I’ve tried not to go out to eat much without Phil. I know Phil would like to participate, but there’s also something good for me about meeting a group of people on my own once a month. Marla’s didn’t have their Sweet Potato pie, so I joined Phil for a little dessert when he ordered his supper. I’m usually up late, but I am wired tonight after drinking several glasses of caffeinated iced tea at Marla’s and then joining Phil having an iced Mocha made in the Keurig with dessert after nine. I try not to be caffeinated after six or so, except for times like this and when we go to our date spot called Cocina Latina where they have the best coffee I’ve ever tasted!

Sadly, Saturday Cocina date nights after church may be pausing for a while, because Phil may no longer be able to get his dialysis done in the mornings. He loves getting it out of the way, and it allows us to have a date after I go to church. We may have to find an alternative time though, because we’ve recently discovered these delicious yet surprisingly inexpensive things there called Taco Bowls. One chooses the meat, and all of the normal taco fixings plus beans and rice are put into this fried flour tortilla. Little pieces of tortilla can be broken off the top of the sides, and it naturally falls apart with residue of its contents toward the end of the dish. We both eat a lot of bagel sandwiches for lunch to save money that way, and with all Phil goes through, we have to find some ways to have some happiness in life.

As the subject line says, things seem to be looking up a little bit. Between time, hand therapy, and a nerve block, the finger injury has gotten tons better. Also, although the option for going into the foot to try to fix the circulation problems wasn’t taken off the table, at this point the doctor isn’t recommending it based on the tests he performed. Sometimes a hairless foot is just a hairless foot with no other reason for it. Phil continues to have the sinus infection and the ongoing pain in his back, neck, head, and specifically face. The cough exacerbates the pain, and it is limiting his activity in some areas of life. He’s going to start seeing a physical therapist to see what can be done to help lessen — if not get rid of — the pain. As I think I mentioned in the last update, the pancreas biopsy was inconclusive, because the people doing the test didn’t get any of the pancreas. After I sent the update, his pancreas numbers started going down when labs were checked. So it’s doubtful Phil is going to let them try the biopsy again, unless something really changes. His work attendance has been a lot more steady, and even when he isn’t there, he puts in a full day here at home when there’s work he can do outside the office. There are times when he’s had a bad dialysis cramp night when sleeping it off in the morning puts him in a good enough frame of mind to work through the afternoon and into the evening.

This seems to be the time of year for locks and gates to stick. The thumb turn our back inside door works great, but tonight when I got home, I couldn’t turn the lock with the key for the longest time. It was very frustrating not to be able to get in my own door! Then last weekend the latch on the front gate had problems. In recent weeks, we’d been noticing it was particularly hard to shut and chalked it up to the changing weather. A screw fell out sometime during this rainy weekend, which left the lever hanging and the gate unlatched. It wasn’t until this sunny Monday Phil was able to get out there and fix it. Fortunately, he found the right sized screw to fit in the gate. It should stay for a long time, we hope.

Speaking of changing weather, we haven’t had our first fireplace night of the season yet. I came very close last weekend when it was so cold and damp but decided to wait a little longer. Even though it’s been seven years since we’ve lived here, I still enjoy what feels like the luxury of flipping between heat and air conditioning during the spring and fall months. After living in a building and dorms where this wasn’t possible, being able to flip that switch still makes me feel grateful.

I’ve made some good strides preparing the music for my show, although there’s still more to do. When life is better for Phil, I don’t worry about trips to the ER or admissions to the hospital, and I find I’m able to get a lot more done. I’m still not where I want to be, but I’m starting to dig out a little. I wish I didn’t have all of this energy and drive at night, but even without the Caffeine, it’s just the way I seem to be wired.

Speaking of wiring, I was able to get that bill due to a motion sensor going off on our security system excused. You may recall that happened because of a low battery, and we could not see the battery indicator which notifies users the battery is low. I don’t like “playing the blindness card” and try not to do it when I can avoid it. However, this was a legitimate access issue which was beyond our control. I had to fight pretty hard to make this lady understand the reality of our situation. I’m sure she gets a lot of sob stories about why this bill should be excused. I also know that false alarms causing the police to come out cost the city money. So I understand why she felt she had to try to take a hard line. However, when she incredulously asked about why there wasn’t a beep or something to alert us like on smoke detectors, I knew she finally understood.

Phil and I have had very little if any impact from the Federal Government shut down, although we definitely have friends in Federal jobs that have been affected. For a couple days, a government library site for the blind and others who can’t read print books called BARD (Braille and Audio Reading Download) was shut down, and I was a little embarrassed for blind people who seemed to express it was the end of their worlds when other effects are so much more life-altering. State libraries were still open to send books by mail, and the mail was still running. Being able to download books as we can on a regular basis is a luxury, and there are those who have forgotten that already. Granted, I had saved a lot of books on the computer so wouldn’t be running out of reading material any time soon. The site is back on line now, and one of the best parts of our month has been the advent of the new BARD Mobile app for the iPhone. I have something similar but with synthesized speech which has a once-a-year membership fee, but this is real people reading audio books. It allows Phil to take a book to dialysis without hauling yet another thing he wouldn’t normally carry. I don’t have a compatible Braille display for the iPhone, but for those who do, it’s possible to use the display and their iPhone to read braille books.

Finally, we’re enjoying some of the perks of the new operating system which came out for our phones. I haven’t even tried what could turn out to be my favorite feature of the new system — audio face time. I still haven’t reconciled to wanting people to see me, unless it’s to help look at something for me.
But with our network connection in the house and the bad cell service, Face Time offers a much clearer audio conversation.
I didn’t think I could depend on my phone any more than I already do, but I recently put in all of the dates I play for church and the songs listed on the schedule in the notes section of each playing day. Phil and I already share a calendar, so he can keep track of when I schedule his rides. There are things we will always need to do on the computer, and because cell phone service is so bad in this house plus getting Internet through the phone line, I don’t think we’ll be getting rid of our land line any time soon. Still, I am grateful for the number of things our iPhones help us to do.

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