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

Archive for July, 2012

Welcome to the Gagnes house.

God must have decided we needed a little more excitement in our lives.
But before I tell you about that, let me mention some good things about the last day or so. 1. I learned that the board of which I am no longer a part had a contentious meeting lasting over three hours, and I don’t have to take the minutes or read the nasty e-mails going back and forth. 2. We learned our new computer is probably going to be delivered on Monday. 3. I finally found the chord to plug into my stream, so I can hear it through the stereo. Finally, 4. I learned I had access to the audio versions of a series I was reading with a speech synthesizer. I’m reading the 50 Shades books, because I have to learn what all the hype is about.
Phil didn’t go on the bike ride he had planned, despite the beautiful weather. This is because he woke up very dizzy. Neither of us slept well last night, but I got a good nap in earlier today. Phil’s feeling horrible continued throughout the day with the added “benefit” of him feeling nausea when he looked down. He made it through the work day “playing with his toys” which are digital talking book players the University bought to show students. He brought home bagels for our supper and then went to bed. I woke him up to take his meds, and he went to our freezer downstairs to get some muffins for breakfast.

I had been down in the same room to get clothes from the dryer and noticed a bad smell, but we often have a storm drain that causes this problem. Phil was about knocked over when he opened our downstairs freezer and discovered it hadn’t been running. I have no idea why.
He unplugged it and plugged it back in. The compressor started, but meanwhile, we have a freezer which will need to be clean out. We’re having in our cleaners for an emergency call. I have a very weak gag reflex, and with Phil’s nausea right now, he’s no good for it either. He about lost it downstairs as it was.

To add to the chaos, the C.O alarm started going off. I don’t know what triggered that.

We knew some things had to go in that freezer, but who knows if we’ll have anything left. the odor traveled up the stairs. Phil thought the odor would lessen for tonight now the that the freezer was running again. I put a couple new scentsy Sunkissed Citrus cubes in my warmer to try to ward off the worst of it. Either the freezer’s helping, the warmer’s helping, I’m getting tolerant of the stink, or a combination of the above.
Rebecca Kragnes with Seeing Eye Dog Zane (Black Lab )
E-mail: rebeccak
Twitter: RebeccaKragnes


the Night of Dialysis

It’s the night of dialysis, and all through the home,
Every creature is sleeping, except me alone.
I let the dogs out. They requested to pee,
Now I’m settled with a glass of peach iced tea.
I wonder how many dialysis spouses,
Sit up like me feeling helpless in their houses?
the sounds of Phil sleeping are so reassuring,
His rhythmic breathing including the snoring.
But then the moans start, and it’s not due to dreaming,
I hope this won’t be a night that he starts screaming.

If I sleep beside him, I’m jolted awake,
by the sounds of his pain and the angst of his ache.
A dialysis side effect is severe cramping,
And just as I get sleep to start revamping,
It happens again, and he’s groaning and crying,
No wonder both our sleep’s not satisfying!
Nothing I can say, nothing I can do,
But to lie there and pray the cramp works itself through.

Cramps wander his body, but tonight as it stands,
The worst ones are felt in his fingers and hands.
Eating with fork and retrieving his pills,
Were the earlier culprits for the cramps of Phil’s.

“Did they pull too much fluid?” I repeatedly question,
When the cramps come after a dialysis session.
their scales don’t make sense the way they calculate,
What is supposed to be Phil’s true dry weight.
In Dialysis World, at least today’s best,
the staff listen and respond to patients’ requests.
In the past it was taken to tortured extremes.
they kept pulling with no regard for cramps and screams.

Phil seems to have settled. I hope I am right,
That he will sleep well the remainder of night.
Nope, he awoke moaning, so for bed I’m still leery,
I’ll wait a half hour ”til my eyes are more bleary,
Maybe then I can sleep without feeling the jump,
of the mattress which makes my adrenaline pump. Low sugar? No, he’s no longer diabetic,
My continued reaction after years is pathetic!
But it served me well to wake up at the time,
Phil needed my help at the drop of a dime.
But now the jolts awake serve little purpose,
And sleeping before they occur feels so worthless.

To those who critique my staying up late,
If you heard what I heard, you’d know why I wait,
To retire to bed when things are more calm,
And sleep washes over me like healing balm.

Shootings and Lights

I wish I didn’t have to write about this. As usual when there’s a shooting like the one in the movie theater in Colorado, the online community goes crazy. I certainly have done my share of praying for the victims and discussing gun laws. But I can’t help but contrast this shooting with another one. This second one happened at ten thirty Wednesday morning across 38th street — which is two houses away from us — around the corner. It was not even a block from where I was sleeping, it happened in a house, and police say it did not involve gangs or home invasion. The people involved knew each other, and it was a private dispute. A 24-year-old died, and another person was injured. A friend contacted Phil and me to make sure we knew. She was concerned about our safety and the area being blocked off possibly inhibiting our travel.

Though the neighborhood shooting didn’t have as many victims and wasn’t public, neither those circumstances nor any of the other factors I named above made me feel it was any less tragic. I used to be able to say that the worst thing which happened within a few blocks from me was robbery. It really sank in Wednesday evening that I could no longer separate myself from it when we heard the truck engines of the TV station we watch for news idling next to the disability transfer zone (for vehicles to pick us up) in front of our house. this Colorado shooting is the latest news just as our little neighborhood shooting was locally. but I can say with certainty that even being within the vicinity of the shooting makes it something I won’t forget and impacts me very deeply. I’ve always been a proponent of keeping as many guns away from people as possible. It was reinforced by this local incident. So as the debates rage on regarding guns in public places, I can’t help but wonder if people are ever going to study and discuss the relationship (most likely negative) of guns in the hands of almost anyone who wants one and safety everywhere.

Phil has been cognizant that all of this computer stuff has stressed me out, and last week a few enjoyable surprise gifts from him came my way. All of them involve colored lighting. the basement is the darkest area of the house, as we have many windows on the first level. Phil found some nine foot wires in different colors which light up when paired with battery controllers, and he’s going to make some sort of design downstairs for me to enjoy. the four other lights are also battery operated and have LED red, green, and blue lights in patterns. There’s a fiber optic tree which not only lights up but vibrates to spread out the individual threads and thus the light. the second is a medallion which will go on my keys with a button very hard to push. this will come in handy when waiting for a bus on a dark night. I could also where and use the laser wand on its lanyard in a similar way. another practical one was called a display base and is a round disc which can go through several color patterns or brighten and dim in white. I used it at the malt shop tonight by setting a glass bowl for tips on it in an effort to make the tip bowl more visible, enticing and fun.

this has turned into a much longer entry than I expected. If you read thus far, thank you, and I hope future entries won’t be this long. I mostly look forward to the new computer’s arrival, although I’ll be learning Windows 7. Plans this upcoming week include rehearsing with a new canter from church, Phil’s usual bike ride, coffee with a friend, the monthly book club meeting by telephone, and dinner out with a couple we probably haven’t seen in six months.

Rebecca Kragnes with Seeing Eye Dog Zane (Black Lab )
E-mail: rebeccak
Twitter: RebeccaKragnes

Rebecca Kragnes with Seeing Eye Dog Zane (Black Lab )
E-mail: rebeccak
Twitter: RebeccaKragnes

Why I Blog, Computer Transition, and Tenacity

Apologies to everyone who sees this info twice. I’ve had to divide my latest writing into two entries.

A friend asked me to write a paragraph about why I blog for a magazine article. I decided to adapt it for this blog entry.

I blog for a few reasons. the first is the nature of my blog which is to keep people up to date on me, my husband, and our dogs — the Kragnes family. I used to write E-mail messages I called updates which went to many people. As time progressed and spam E-mail became more of a problem, distributing them to many people at the same time became harder and harder. Therefore, when I found an accessible blog, it was a God send. I had a sighted person drag a wigit on my blog which allows people to subscribe by E-mail, so it was just as effortless to receive blog entries as the e-mail updates used to be. then I learned how to tweet links to my blog entries for those who follow me there. I connected Audio Boo — a platform for making audio recordings — to my blog. this expanded both my audience and ways of being able to distribute information. The second reason I blog is related to the first but has to do with my husband’s health. Because he’s waiting for a kidney transplant, on dialysis, and used to be an extremely brittle Diabetic, information changed quickly, and distributing it in one place helped me not have to repeat myself and inform many at the same time. the third reason I blog is to get thoughts out of my head and somewhere else. A lot of times these blog entries are more like essays, but writing them helps keep the thoughts from looping around and around in my head. A fourth reason is as an education piece. Even family members say they don’t always understand how Phil and I live as a couple who are blind and have other disabilities/conditions, and writing what’s happening teaches people that it’s possible and how we do it. the final reason I blog is to look back someday. I wish I would have saved all of the updates I have written, because even reading the few that I have from years ago helps me gain valuable perspective. I don’t know if anything other than the blog will result, but certainly some of the things I have written — particularly about our dogs — have been the basis for stories I’ve had published.

Speaking of audio, I plan to continue the audio tour of our house I started and will also have an audio Boo for women — especially those who are blind — explaining what my mammogram was like. Mine came back with no issues, but I thought it might be a good idea to inform women of my experience and a thing or two I learned.

the biggest news of the last couple weeks is that our home computer has decided that after a certain point in the start-up process, it will not continue and goes to a blue screen. On this blue screen are lots of possible reasons for it’s existence, but despite several people with computer expertise trying to go through the process of elimination by using the computer in safe mode (in which our speech doesn’t work), a solution has not been found. Everyone is dependent on computers these days, but I would guess that between Phil’s work and all the things for which we both use the computer to maintain independence, we probably depend on it more than the average household. Phil had a computer at work and his IPhone at home, so his routine wasn’t as disrupted as mine. Fortunately, we still have the laptop from Phil’s work that he used in the hospital in spring 2011 when he couldn’t speak. He typed out his responses for nurses etc. Right now, the laptop is our temporary computer until the new one we order arrives. We have discovered a few advantages like being able to plug two keyboards into it when we play computer games. Still, considering that my plan was to organize files on my external drives, this has set that project back a couple weeks. I am thankful I don’t have any major responsibilities during this period between home computers.

Most of my music I routinely want to hear is on SD cards, but of course, there are those one or two albums on an external drive that I wouldn’t mind having. Dragging this laptop to the spare bedroom / office to connect it to the drives probably isn’t going to happen, especially since Phil and a few friends have been so good about helping me get as many things set-up on this laptop as possible. These include games, a spell checker, and a way to plug in my SD cards full of music. Obviously I have e-mail, but I don’t have access to my e-mail address book. For the most part, I can reply to messages sent to me, but the one exception was the e-mail address I needed to send blog posts. I find writing my posts in e-mail to be the most blind-friendly way to edit them.

I’m going to appear to change subjects, but stay with me. this will make sense after a while. On Twitter a few blind people have been having a discussion. One quote said, “there are two kinds of blind people: those who can and those who think they can’t.” Another was something like, “if you want to find a way to do something, you will, but if you don’t want to find a way, you’ll find an excuse.” Certainly, there are circumstances in which the above quotes are true, but I’d like to suggest that this compulsion to find a way or thinking you can — which I’ll shorten to tenacity — doesn’t always do the job well or efficiently. Now back to finding the e-mail address for this blog. Phil found some instructions on the site for doing it, and I was up almost an entire night trying to follow them. I had the instructions in one window and my blog controls in another. I’m not going to explain it step by step, but I will say this. they had steps one through four listed for the process. they neglected to mention sub-steps 2B and 2C which made all the difference. There were links beside the instructions for the steps, but I was then presented with .jpg or picture files. Perhaps these instructions with their pictures are adequate for a sighted individual, but after scouring the suggested screen and then clicking on almost every conceivable link *not detailed in the instructions, I finally found what I needed. I had tenacity, butt even with Phil’s help, it took me a lot of a night to do this task. My guess is that someone who could see the screen would have assessed it in five minutes. There’s the example of tenacity not being efficient.

You may remember that Phil and I have a Keurig which makes delicious hot drinks and even cold ones with ice. Ever since we got the machine, I’ve had a problem seating the water reservoir down in the appropriate place. I’ve tried pouring water from a pitcher, but because of the position of the reservoir, I had to pour with my nondominant hand. Let me tell you, that makes a mess! Besides, the reservoir has to be cleaned and rinsed, so it needs to come off the machine. Putting it back on after filling it is where I go wrong. I use both hands for the task with at least one pointer near the groove where the reservoir is supposed to sit. I do my best to line it up feeling where machine and reservoir are supposed to meet. Phil tells me it should automatically seat itself in the right place, and it’s happened that way for me occasionally. Mostly though it feels like it’s seating itself, and when I look, there’s a gap between reservoir and machine. Worse yet, it’ attaches in such a way that it is stuck. When Phil finds it in that condition, he gets frustrated, and I can’t blame him for that. Phil worries I’m going to have it so stuck together, it will break one day. Tenacity isn’t worth breaking something like this, so until I can finally have someone help me figure out what I’m doing wrong, Phil is in charge of seating the reservoir. The people promoting the world view on blindness and tenacity I discussed earlier say I’m just using my blindness as an excuse. I have tried, and I just can’t agree with them.

Rebecca Kragnes with Seeing Eye Dog Zane (Black Lab )
E-mail: rebeccak
Twitter: RebeccaKragnes

Somebody’s Knockin’ and other things

It’s true that I keep weird sleep hours, so around two Saturday afternoon, I was in bed. Phil came home from dialysis feeling sick, because too much fluid was taken off. Phil and I have an ongoing friendly debate. I strongly believe that with the advent of especially cell phones, even if you’re in the neighborhood, it’s only polite to pick up the phone and call ahead to see if you can come over. Phil still believes it’s OK to just drop by. Perhaps if dropping by means ringing the doorbell once and then leaving when no one answers, maybe I can understand. But at two this afternoon, not only did this person ring the bell, but came up on the porch and tapped on the door twice after ringing the bell. Of course this sent the dogs to investigate, so the person knew we were at home. I was not in the mood to be seen in my pajamas, and when Phil’s in bed, his prosthetic foot is off. Of course, by the time he got to the door, the person was gone. Phil thinks it’s nice that a certain person checks on us by dropping by. I find it to be a pain in the butt, and quite frankly, there’s something about this person I just don’t trust. Others have told me she steals from them, and I haven’t been comfortable letting her in the house since hearing this. We both think it was her at the door, because she habitually comes without calling despite my asking her several times to call first. Yes, we do have an intercom to see who’s at the door, but then it’s awkward when it is someone we know, but we aren’t dressed appropriately etc. I have also had solicitors who just refuse to go away, and although that’s annoying, I’m more annoyed by people who can’t respect my request to call first before coming.

Last week I had my six month dental appointment and my annual physical. I was ready for my doctor to yell at me for my weight, but she told me I actually lost twelve pounds from last year. I’ve been drinking water and iced tea when I felt like eating and having fewer desserts, although I need some. Strangely, it’s made me want to try harder. I have a feeling the cholesterol numbers aren’t going to be so great, but we’ll see.

This weight loss is especially encouraging since I had to give up my Y membership. It’s just not practical to swim with a dog who hates water. I’ve tried a number of things to make it work, and they just don’t. Some people feel OK leaving their dogs alone, but I really want my dog with me. I did leave it open to getting a one day pass in the event that it worked for someone to watch my dog while I swam.

turning 40 at my doctor’s office means my first mammogram which happens this week. I’m wimping out and taking paratransit there, because the building is connected to the hospital and is not in a very good area of town. The staff seem nice there, but I’m a little apprehensive. I think it’s probably a very individual experience, because I’ve heard everything from horror stories to a little discomfort to “it’s nothing”.

I am finally free from the board in which fighting took up the majority of our interaction time, and I’m glad I’ll be able to devote more energy to other things. I hope to do some organization of my digital files of music, books etc. in the next couple weeks. There’s also a ton of laundry which needs to be done. Then I can get down to my music.

Phil had our tandem worked on to add an eight speed hub on which the gear can be shifted with a hand. Before there was a two speed hub with a kick-back to shift between the two speeds. This is what caused Phil and his captain to wipe out on a hill and one of the reasons they haven’t taken the trailer and Garron. Garron’s absolutely miserable when Phil’s gone, and it’s hard to go up and down stairs with both dogs around. Now with this eight speed thing, Garron should be able to go along, and I think everyone will be happier.

Zane proved yesterday at church that he still has the stuff. He was hesitant as we were walking up the aisle and then made a couple of weird turns going clear across the aisle and taking me to the piano in a very different way than normal. People told me there were a lot of obstacles in the way we normally travel. Of all the dogs I’ve had, Zane is the one who has the most initiative to find an alternate route if we need to find one. The others could do it, but they weren’t quite as assertive. Most likely, they’d make eye contact with a sighted person who would see we were in trouble and come to help. I like Zane’s ability to literally think on his feet. All of my successful dogs have made great decisions, but Zane’s initiative really is different from the others.

I had an unexpected special treat at church yesterday. I enjoy working with all the canters at church, but one of the female canters forgot she’d switched with our only male. He and she co-cantered, and she harmonized. I harmonized with them in practice, and it reminded me of the days of singing with my sisters. Just as in this situation, one took melody, and the other harmonized. I figured out the harmony and filled in with a third part. they shared a mike, and I didn’t want to overwhelm, so I just accompanied them for Mass. It was so cool to hear them singing together praising God without it turning into a performance.

As Phil was ordering some adaptive technology for work, he came across something called the Pen Friend. I knew a blind woman who absolutely loved hers, but I didn’t really understand it’s abilities. It comes with stickers, When the record button is pushed and touched to a sticker, the recording is associated with that sticker. I can use Braille, but this is harder for Phil, and the Pen Friend is going to be especially good for distinguishing medication without having to open bottles. The stickers are on the caps, so we’ll just replace the caps on the bottles rather than having to use more stickers. He will also be able to record labels and cooking directions on boxes/bags of things we pop in the oven, and I can take on a little more of that kind of thing. Putting stuff in the oven is easy, but knowing what things feel like frozen and lack of cooking directions has been my main problem. The Pen Friend stickers can also be put on note cards and attached to things. There are machines which scan and read bar codes to identify products, but with our reader once a week and a significant cost difference, this Pen Friend looks like a better solution for us.
Rebecca Kragnes and Zane (Black Labrador and Seeing Eye Dog)
E-Mail: rebeccak
Twitter: RebeccaKragnes

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