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

Archive for December, 2012

New Year’s Eve Between the Raindrops

I think Phil might be asleep or reading, but in either case, he’s not out here. I thought we’d be spending New year’s Eve playing games together, and maybe we will yet tonight. We are both really into a game available on smart phones called “hanging with friends” which is hang man with points assigned to the letters like scrabble. In addition to my Yahtzee enthusiasm, I’ve found a new dice game online called Farkle which is quite fun!

We have spent some quiet time together, but we’ve both been gone quite a bit too. I played for church both days this weekend and did my gig at the Malt Shop. Between church and the Malt Shop, I had to grab a nap. Phil had dialysis on Saturday and this morning. Despite missing him , I had an OK Christmas. My most unexpected gift came from a church member I barely know. He brought it to me right after I finished playing Christmas Day Mass. He makes what he calls “Joyous Crosses” out of stained glass, and each color represents something very basic about the Christian faith. A friend typed out the text of the sheet which came with it, and I’ll paste it at the very bottom of this message for those interested. I wish I had a good picture of it to show you. Because of its translucence, I’m not sure it would come through very well in a digital photo. Sighted people have told me it is very beautiful, and of course I like the translucence and the colors!

A few stumbling blocks came into being soon after Phil got home from the hospital. The most major one happened to him the very Wednesday night he returned. Even though it’s not the best thing for us, Phil and I were both hankering for some sausage when we made our grocery list, and Phil made sandwiches on little rolls and popped the whole thing into the oven for a while. They tasted fantastic, but unfortunately, he got a piece of gristle or something very hard in the sausage. I heard the pop and flinched, and immediately Phil was in very bad pain. We believe whatever happened, he broke a tooth. With dialysis the next day, he didn’t think he could do that and the Dentist, and he wanted a day of work. Additionally, our dentist only sees patients Monday through Friday. Add in the holiday, and you have one very miserable Phil. We sit down to eat, and despite his care, food encounters that tooth and/or the gum around it. he gets up from the table to go scream in pain in the other room, and it’s just heart breaking. He likes apple sauce, but not as the only thing for every meal. Too bad it didn’t happen to me, maybe I’d be less motivated to eat. Sometimes even bending his head or putting his jaw in the wrong way can set off the pain. Phil tends to withdraw when he’s not feeling well and I’ll let him until a decision needs to be made about what’s for supper and/or whether he wants to eat anything. Gram crackers seem to be another thing which is soft enough not to give him any trouble.

My little road blocks are comparatively minor, but they make me feel less in control of my life which is hard.
It’s been weeks since our last significant snow fall. Yet Phil and sighted people who have looked at it tell me that it would be very dangerous for me to try to cross at 38th and Bloomington — an intersection a block away which gives us access to two intersecting bus lines. This is because apparently the owners of the corner properties are not doing their duty in keeping the street corners unblocked from snow mountains. One of the first calls I’ll be making on Wednesday is to the city to have them start fining these people and/or clearing the corners. I played for church this weekend so got rides. I can also plan to take Para transit called Metro Mobility to get to appointments and not encounter problems on the bus trip back home. But it bugs me that after such a long lapse, Zane and I are still unable to cross streets a block away to the buses. I thank God for friends who come to my rescue when I absolutely have to get something done that can’t wait for four days to plan a Metro trip. I was especially grateful to one who quickly covered when another suddenly made a decision that she couldn’t help a day before we were supposed to do something pretty time sensitive.

And speaking of time sensitivity, our reader is gone to Peru over the holidays, and I’m realizing we’re going to have to make arrangements to get a couple of bills paid in her absence. It’s so rare to have a reader gone for over three weeks, and I’m a little scared to ask the couple who said they’d cover once or twice. They have their own set of issues in their lives, and I don’t want to add to them.

Then there are the electronics. The talking book/mp3 player which goes practically everywhere with me has started acting up after four and a half years of constant use. It would cost more for repair than to just get a new one at this point. I am praying it can hold on a little longer, because its price has been drastically reduced. There is a lot of speculation that this is because a newer model which does a lot more is coming on the market in the next three months. There’s also speculation that the major Library of digital talking books for the blind is about to launch a new iPhone app for playing and downloading them. It would be great to buy an extension for the iPhone for a lot less money to play my SD cards full of music And forget about a new player altogether. Remember the wonderful light I had to have repaired? It’s once again on the blink, and like my player, it’s going to cost more to get it repaired than to get a new one. This lamp is no longer being made, so I have to decide on a new model, but everyone does business over the internet. I won’t buy clothing over the Internet, because I don’t want the hassle and extra financial burden of shipping things back if they don’t work, and the same applies here. So many things now come with inaccessible menus that I am leery of getting anything without putting my hands on it and learning how it works first.

I’ve called these various things roadblocks, but perhaps a better description of them is raindrops. All of them will be resolved one way or another and probably pretty soon just like rain evaporates. My friend Meg showed me a great song with lots of instrumental and harmonic textures, but the lyrics really touched me too. Below is a link to a video of the song and its lyrics. I think most people reading this blog will enjoy some aspect of this link. I can’t help but think that I am so grateful Phil and I are walking between the raindrops together.

The Joyous Cross

Genesis 1:27 15: 1-6
Luke 4:16-22
John 4:1-30
Isaiah 40:16 11:1-9
Hebrews 9:9-26 10:5-20
Matthew 5: 14-16

BLUE: The universe and all the people living in it; created in God’s image and likeness; created by the Father. Genesis 1:27

“Abraham’s descendants more numerous than sands on the sea shore or stars in the sky.” Genesis 15: 1-6

The blue triangle is the Trinity – three in one, yet one in three. 2 Corinthians 13: 14

RED: Covenant – The new covenant of God and His people, not the old covenant of the blood of animals. All the cedars in Lebanon forest do not contain sufficient
fuel to consume a sacrifice large enough, nor all the blood of animals in Lebanon forest enough to cover the sins of the people. But the new covenant of
the blood of the eternal Father’s son. Isaiah 11:1-9 For as the water of the sea is from shore to shore, so also the dry land shall be full of the knowledge
of the Lord. This blood forgives sin and makes us righteous to the Father. Isaiah 40:16 Way Bible Hebrews 7:1-28. 9:9-26. 10: 5-20.

GREEN: New life – Baptism of the water and spirit of the word, scripture. John 4: 1-30.

GOLD: Adjacent to green: Life after death, if we choose to drink the water that never allows us to thirst for anything but God’s will. We can be immortal.
1 Cor 15: 50-58.

The top piece of glass in the cross means morning, which is God’s message to us. We have another day and a free will to do what we want with it. The bottom
piece of glass in the cross, sunset, is God’s signature on the day.

All colors mean the rainbow – God’s promise not to destroy the world with water again. Genesis 9: 9-17.


Phil is home, and a conundrum

Phil is home, which is absolutely wonderful, but getting him here was no easy task. After this experience, we are considering dialoging with hospital personnel about their policy that one can’t take a cab or other public transportation home after being released. We understand that if one comes out of the hospital after a major surgery, having someone driving him/her home is a must. But there can be a little more pre-planning than was possible for us during this holiday time. In Phil’s case, he has been asymptomatic for at least twelve hours. Phil took a cab to the hospital on Christmas Eve morning, because we knew people were gone and/or celebrating the holidays. This is no less true on the day after Christmas, except that more people are now working. Many of Phil’s co-workers either take buses or ride their bikes to work. We thought we had a ride ready, but our friend needed to attend a gathering after the sudden death of another friend. Of course we understood, but coming up with a back-up plan was pretty tough to do. When Phil is released from the hospital, he wants to go home as soon as he can, and my not being able to come get him hampers this quite a bit. We try to make plans for the time period we think he might get out, but as just was demonstrated, those plans can fail. The social workers said there were other alternatives, but I wonder what they are? I know one time Phil got a ride from the hospital to dialysis in some kind of medical van, and then we got the bill — none of which insurance would pay. It was almost triple the cost of a cab. I know we found a ride and am very grateful. We wracked our brains, made some calls, and Phil even put a Facebook post out asking for help. He’s the one who actually came up with the person who brought him home

The 2012 Kragnes Kard and Karol

To the Tune of Here Comes Santa Clause

Here comes a catheter, there goes a catheter, glad to see it go! Used for dialysis, to bridge between grafts, but was it friend or foe? It was a breeding ground for infection, bad one threatened Phil’s life! Two friends and ambulance to the rescue summoned by his wife.

Here comes Coumadin, Phil takes Coumadin. Isn’t Coumadin grand? Thinning Phil’s blood, preventing clots from graft, arm, shoulder, and hand. Frequent hospital visits from clots, were not a beautiful sight! Phil takes his meds, while Rebecca prays that things work out alright.

There’s one iPhone, there’s another iPhone, the favorite Kragnes toy! Rebecca was terrified at first but soon learned to enjoy,
A talking phone with apps for business, fun and to navigate. Schedule, remind, read money, play games, record, and communicate.

Here’s a smoke alarm, there’s a detector, this time of CO,
Friendly visits from our fire department gave neighbors a show. The gas company had to check that things were safe for us here. Replaced Co detector, vowed no oven spills next year!

Here’s a talking book club, yes a book club, meets by telephone. Rebecca couldn’t make a local club so started one of her own, Twenty blind across the nation meet on a Thursday night,
The last of the month, for 90 minutes sharing their insight.

Here’s a Black Lab and German Shepherd,
Both in middle age,
They’re in the “sweet spot of their work, especially at this stage. At the peak of work experience, puppy behavior done,
They’re not yet seniors, so retirement worries have not begun.

Phil’s been middle-aged for a while, Rebecca’s middle-aged too, Now she’s forty feeling euphemistically “less new”!
With the century is in its teens, she’s glad that time is behind, There’s no desire to fast forward but neither to rewind.

Here was 2012, there goes 2012, coming to an end,
Only thing that’s left to do is wish each family and friend, Merry Christmas, happy new year, peaceful days in between.
So say good night, 2012, good morning, 2013.

Phil on his way to the hospital.

Another holiday, another hospitalization. Phil was saying a week ago that he has never been hospitalized over Christmas, and I think that’s about to change. Phil left for dialysis without Garron, because he most likely isn’t going to be able to complete a dialysis run and will be heading to the hospital from there. Because this is Christmas Eve, no one will be available to go pick Garron up if Phil stays, so we thought it was best that he stay here with me. Phil’s intestines have him in the bathroom every twenty minutes, and he vomited this morning. There hasn’t been a fever to go with this, but he definitely needs medical care. He wasn’t able to go to dialysis Saturday because of this. Yesterday was better, but it started again last night. Obviously, Garron is very confused. We didn’t have any plans today, and tomorrow the only solid plans revolved around me playing for church in the morning. I’ll either leave him for a couple hours, or — because my canter loves animals — he may come to church with us. Given the circumstances, I don’t think people will mind, and he’ll be well-behaved. Phil and I are hoping he can come home after they determine what’s wrong and treat it, but I think we know the score.

On another note, the Kragnes Carol is almost done. I know a lot of people get their Christmas cards out early, but I’ve really come to value that Advent is Advent. Yes, I listen to Christmas music like everyone else, but I like to send our version of a card close to Christmas. The card will come out later today.

the best we’ve been all year: reflecting on a great week

So I liked about the last post being the last before the Kragnes Christmas card. I think you’ll enjoy reading this one though, because I’m not lying when I say that right now Phil and I are both in a pretty good place. We sighed with relief when the catheter came out without incident. The timing of the big snow storm this past weekend had me worried, but things really worked. I didn’t make it to the Malt Shop Sunday night, but the person helping me at my IDS Crystal Court gig sold a record number of CD’s Saturday afternoon. The Thursday before that, I had an extra Malt Shop gig, I I believe I made the most tips in my six and a half years there, except for when one gig fell on my birthday. We also did great at Mall of America today too, and I really think sales are partially driven by who is at the table. Dwight has the ability to talk to people without it seeming like a sales pitch. The sound at both gigs was pretty good, but IDS in particular has a great improvement in sound this year. The better the sound, the more confident I am. I don’t feel like I have to compensate for someone not balancing the keyboard the way I need it.

Perhaps some of the feel-good vibes this week are because I am getting out and doing more gigs than normal and in places where I normally don’t play. People get used to me at the Malt Shop and church, and although I try to put my whole heart into those gigs, there’s something about these Christmas gigs that is really special. Even Christmas music in the Malt shop brings out a more jovial atmosphere in the place. I’m always scared that people are going to be sick of Christmas music, but thus far, that hasn’t been a problem. In fact, people seem to be getting more and more enthusiastic as the weeks progress.
I think Zane enjoys the challenges inherent in following someone one through big crowds of people. We marvel that people don’t seem to be watching where they are going, but that isn’t even ticking me off as it sometimes does

Even the snow days when Phil and I were home after having to cancel plans were light. We stayed up late by the fire knowing there was very little chance we’d be going anywhere in the morning and just enjoyed each other’s company.

The iPhone continues to improve life. Our friend Michael helped Phil to make a joint calendar for us, so we can put events on it we will both see on our phones. I’m learning another fun game on the iPhone called Hanging with Friends. It’s essentially Hang Man, and although it may not seem very exciting to the people who love high intensity graphics and virtual reality in their games, being able to play something like this in such a portable and independent way is a real joy for me.

Even the extra little critters living with us don’t seem to dampen our spirits. For those who don’t follow Phil on Facebook or haven’t heard, we have a few guests of the mouse variety in our house. Unfortunately, it was the guy who fixed our drier who informed of this. Although that was a bit embarrassing to me, Phil has caught a couple already with the traps with the green minty stuff from mint Orios as bate. Phil is lucky not to hear the rustling and the squeaks to which I get treated occasionally, but we’ll figure it out.

Zane and I went to a class holiday party in which our new reader participated. All the students had to volunteer for an agency for people with disabilities. That’s how Sarah Grace found us. We’ll miss her when she goes to Peru over the holidays, but despite the class being over, she’s going to continue to work with us. Anyway, students talked about their volunteer experiences in this class, and it was fun to be the only person there on the other side of their volunteering. The other students didn’t have the one to one relationship Sarah Grace has developed with us. Someone brought wonderful chicken wings to the party, and I thought we were going to get away with avoiding Zane getting any. I was dumping my bones in the trash when one slipped out, and Zane got it quick as lightning. I watched him very closely for the next day or so, and although he may have cleared a large room had we been in public, there were no symptoms of him being sick. I believe we’ve past the critical period.

Finally, I lost four things, found three of them, and the third will turn up when it’s supposed to. In church Saturday night, I didn’t realize it when my ear buds dropped to the floor. My canter Dwight’s son saw them fall and knew exactly where they were when I realized they were missing. He also found a little SD card I dropped in the bathroom. Phil and I crawled all over and couldn’t find it. That was another thing we hoped hadn’t been ingested by the Black Vac. It was hiding under a rug., Then last night I got out of a cab here at home and didn’t realize that my combo talking book and music player called Victor Stream had dropped, while I was getting my backpack situated. This time Our cleaning guy came to my rescue. It was lying by the curb, and I have no idea whether it was on the snow or down in the street. I was just thanking God no one had run over it. The other item I lost is something which will turn up and is easily replaceable without costing an arm and a leg.

the big and the little things

Today is a day for which Phil has been waiting for a very long time. He had a 2:00 PM appointment to get his dialysis catheter out. Floater nurses had trouble with his graft at dialysis clinic, so he was also going in for an ultrasound of the graft. Since then, the graft experts have had no trouble using it to dialyze Phil, so it should be just a formality. Then he came home to the box carried into our living room by the UPS man. Our reader came tonight to read the instructions for what is in it. Phil found a recumbent exercise bike on sale and wants to have the kind of cardio vascular work-outs in the winter that bike riding affords him in the summer. He’s used the regular, upright exercise bikes and isn’t a fan of how uncomfortable they are. That makes two of us. Phil is also trying to convince me that I’d be able to use it and enjoy exercising while listening to music, working with my phone, or whatever. I’m skeptical, hate that sweaty, out of breath feeling, but we’ll see. Apparently the reviews said there were people who did it, and the bike was so comfortable they lost track of time. I can’t quite imagine that, but whatever. Phil definitely got it for himself, and if I like it I’ll be surprised. It’s not like the iPhone of which I like the basic premise of what it does but dislike trying to learn a new method. I swam, because I didn’t feel myself sweat and by necessity had to regulate my breathing. But until I am no longer working with the current black one who is afraid of bodies of water, swimming is out.

If I sound cross today, it’s because I am. As much as I love Christmas time with extra gigs, music, and lights, there’s a part of me that just wants to hibernate. It wasn’t helped yesterday when I got a text from a friend regarding a gig at Mall of America a week away. I called her a week and a half ago to see if she was available. She told me she’d get back to me right away if she couldn’t do it, so I could find someone else. When I didn’t hear from her, I thought everything was a go and texted her to remind her that I definitely needed to know. That was when she texted me back and said she was sorry she couldn’t do it. Since then. I am grateful to have come up with someone who can help. A blind man was famous (or infamous depending on your point of view) for saying blindness is nothing more than a nuisance, but this whole affair has brought to the service some definite issues about how sometimes blindness is just a pain in the butt! .

Most of the time, we manage fine planning ahead for things for which we need assistance. This falls into one of these gray areas, and it wouldn’t surprise me to get a few responses from blind people who wonder why I need help at gigs like this. Yes, for those who don’t know, some blind people get their kicks from acting superior about how they could do this or that independently and telling me that I should be able to as well. I have observed sighted pianists who can handle both the playing and the sales, but I believe strongly that it takes eye sight to do it. The table isn’t always close to the piano, and people don’t want to disturb me while I’m playing. It really takes someone right there to answer questions about the prices etc. Then there’s finding my way. At IDS, the woman who sets the dates and times meets us there, and I can use sounds and my dog to get close to crystal court if I am alone. It’s much nicer to be driven there and have someone for Zane to follow who gets us right where we need to be. Many of you probably know Mall of America is the biggest mall in the country, and of course, details are sent through the mail with a map highlighting where we are supposed to be. I could take the bus or metro mobility there, but once there, I really need someone who knows where we need to go. Some of you have heard me talk about how frustrating malls are, because they aren’t covered under the Americans with Disabilities Act. Store clerks have to help people with disabilities, so going into a store is no big deal, but malls do not have to provide help and rarely do. And to those staunchly independent types who insist I should be doing all this myself, pardon me if I don’t want to wander around asking people who can’t give directions to tell me where to go and then try to guess how to do it. There are just some times when we need help, and this is one of them. I can handle gigs at the Malt Shop, because the CD’s are on the piano itself. I know my way around there pretty well, it’s a small environment in which help wouldn’t be far away if something went wrong, and people are generally honest about giving me the right amount. I’ve never been cheated or stolen from at the Malt Shop. But these Christmas gigs with tables far away from the piano, the noise in these environments, etc. it takes eyes to figure out what’s going on. Last year at IDS, we had a woman come begging for money. My sighted assistant spotted a sandwich shop not far away, took her there, and bought her a sandwich himself. I offered to contribute money toward her sandwich. I don’t like giving cash to people and would rather buy them food. I’d wouldn’t have been able to do anything like that without someone there. I would have felt vulnerable wondering if this person was going to get aggressive if I said no, since any pan handlers are mentally ill, The woman tried to get more out of my friend “for my baby”.

Speaking of the mentally ill, I’ve had a couple of really disconcerting incidents on the bus the last couple weeks. Those who listen to my audio boos know about these so might want to skip this part. A week ago I boarded a 14 and soon learned there was a mentally ill guy on the bus. Because I have a dog, I am often targeted by these people. It doesn’t matter how much training I have with people who are mentally ill. When I am targeted with erratic behavior it’s still very scary. A kind passenger traded seats with me, so he couldn’t reach my dog. This guy when from making cooing noises at Zane to screaming at him. I had to walk by him to get off the bus. At first he tried to grab my hand, and when I hurried on my way he lightly punched my arm and yelled “get out of here!”. I called customer service, and yesterday talked to the driver’s manager. The driver didn’t hear anything that was going on. I thought passengers informed him, but apparently not. The driver was instructed to be the captain of his ship and be more assertive. I learned that it would have been OK and perfectly within my right to call 911 if I felt unsafe. Other passengers shielded me as we rode, but it really frightened me that I had to walk past this guy. One blessing was that he’d was on my right and would have had to go through me to get to Zane who was on my left.
Another blind friend and I were riding on an 18 a couple days before Thanksgiving. It was crowded, and although I tried to get a forward-facing seat to protect my dog, it wasn’t available. We were assigned seats across from each other, which is the worst place to put two people in sideways facing seats with dogs. The dogs lie in the aisle and narrow it significantly. Luckily we were on a bus on which there are hollow areas under the seats. If I feel Zane pulling to go under there, I know some pig has left something Zane feels like eating. But if the area is clean, it is a nice place to put the dog with my feet in front of him for protection. A woman in a wheelchair needed to get off the bus. Zane was tucked under the seat, but my friend decided to get off and get back on the bus. I’ve made this decision under different circumstances and understand it. Once the woman exited, my friend and his dog re-entered, and I was appalled to hear a man swearing because “that guy with the dog is getting back on the bus.” To make it worse, the person was Black. If anyone said anything like that about someone in their community, they’d be the first to cry discrimination, and rightly so. But apparently it’s OK to say that to us?

I have felt vulnerable a couple times lately in another way. I have this key holder with a beautiful green stone my mother gave me, I love carrying keys, my remote control for the security alarm, Tanner’s dog tag, etc. on it. The stone is decorative but also keeps the stuff on the holder. Twice this past month, the stone has come unscrewed in my pocket Unbeknownst to me. Then once out of the pocket the stone has fallen off exposing the pointed end of the holder which caused keys to fly off on the floor in all directions. The first time it happened on our porch as I was trying to go to Mass, and the house key stayed in my hand. The second time was right after the encounter with the mentally ill guy on the bus, and every key scatter all over the back deck. I had to make an urgent restroom run so couldn’t easily bend over to crawl and find the keys. I used my phone to call my cleaning guy who was just getting ready to leave our house. I’m so glad he was there to open the back door and help me scoop up the keys. Also fortunately, none of the keys fell through the slats in the deck. Phil suggested I make a trip to the hardware store to obtain a rubber stopper, such that if the stone fell off, the keys would remain. It was the same principle as the little stoppers on the backs of earrings to keep them from falling out of the pierced ear. Surprisingly, the hardware store had no stopper, but they had something better. There’s a chemical called “Lock Tight” they used after making sure the stone was screwed on firmly. This keeps the stone in place and the keys as well.

I am glad that I’ll once again be putting my Kragnes Christmas card on the blog, because it’s not coming very easily to me this year. Phil gave me a few ideas over supper tonight, and I think I’ll be able to come up with something. In preparation, I reread all of the Christmas letters from 1998 on, and the only one I don’t have is 2005. If anyone still has a copy, I’d love to have it in an e-mail for my collection. It was the one for which I used “Up on the House Top” and gave a musical tour of the house. This will probably be the last blog entry before the Kragnes Carol, so look for that in the next couple weeks.

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