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

Archive for September, 2012

vascular and electronic pathways.

Well, let’s get the less than exciting stuff out of the way first. Phil’s hand isn’t getting any better. This means he’s probably going to have a hand surgeon and/or a vascular surgeon work on getting more blood circulating back to it. The pain is still excruciating, and that was the recommendation upon seeing the doctor Tuesday morning. He goes in Friday to see if placing a graft in his thigh area is a possibility. They want to do it on the amputated leg to minimize any other complications. I sure am praying they can find a way to make that work. Phil is far happier dialyzing on a graft, and I know he feels better.

Last Friday he overslept, because he had to take a pain killer during the night. The meetings scheduled would have been at eight and nine. Considering I woke him after seven (when I realized it was late), he wouldn’t have made them. He wasn’t feeling his best so took the morning to sleep. By afternoon he was chipper and itching to go get those IPhone 5’s.

Learning how to work with mine is easier than I thought, but I’m taking it very slowly. Phil was so busy working with his on Friday night that I had to go through a bit of frustrating discovery. After having trouble getting a password into the phone (because I didn’t know it was only supposed to be four characters max), I decided to work on the fun stuff — sounds! I went through all the ringers and alert sounds, picked defaults for reminders, texts, and calls, and even assigned a few ringers and text tones to specific people. I don’t like it’s Twitter application, so I’m going to get something which suits my needs better.

Every once in a while when I am having fun with the phone I think, ” Even with the 2 year contract, this is still a lot of money for just having fun. My other phone was ok. Should I have done this?” Then I only have to remember my antiquated and highly inadequate calendar and reminder system. I love my note taker for his awesome Braille display, but it only reminds when turned on. There are no alarms, no recurring reminders or appointments, and no SIRI to keep my note taker the correct order in the calendar. I quickly learned my old phone wasn’t very reliable for setting up alarms. Certain parts of the calendar didn’t speak, and I had to count over the number of squares and then hope I did it right. Each dialysis call reminder had to be put in by hand, and I spent a few hours charting out the next three to six months of reminders to call for dialysis and malt shop rides. I spent a couple hours sometimes trying to figure out why the date was going to the bottom instead of being inserted in the appropriate place. I missed appointments and forgot important things, either because I didn’t turn on my note taker or because my phone alarm failed.

Saturday morning, Phil helped me learn how to organize my home screen into folders. It’s a challenge moving icons around putting things on top of each other to create folders, but voiceover makes it doable.

The IPhone in the malt shop is great! I simply have to press the unlock button to hear the current time between songs, and that’s less than what I did with the previous Phone. Using the comfortable and wonderful-sounding ear buds to talk, interact with Voiceover/SIRI, and stream music is a pleasure. Everything is so clear in those ear buds! I do admit I’ll feel a lot better once I have a case with a lanyard to go around my neck. I’ve heard way too many stories about IPhones being stolen on buses.

Typing is better than in the beginning, but if I can possibly dictate something, I will. Phil had to sign me up in the app store Sunday night, because I had to repeat typing stuff so many times (after repeatedly and inadvertently cancelling them) that the session timed out.

Today at the coffee shop, my friend Michael helped me learn how to find WIFI networks and helped me set up the one for Dunn Brothers where we meet. I downloaded Foursquare but have decided not to send tweets from it to my followers. Although I find it interesting where people go, sometimes it can be a bit much.

As the sighted among you were able to hear, I also obtained AudioBoo. My blind friends on Twitter seem to be able to access the audio boos, but something about the interaction with my blog is making it hard for my blind blog readers. I don’t know what the answer is, but I’ll keep my ears open. In the meantime, I am going to continue posting my boos to Twitter and my blog for those who can access them.

I haven’t merged my e-mail address book with the phone contacts, and I definitely have work to do merging a few cell and home phone numbers. But wow is it nice to be almost anywhere and able to read my mail! I’ve discovered I’m one of the few who reads earlier messages and then the new ones. Apparently everyone else reads the latest first. Experienced IPhone users don’t even know if it’s possible to set up the mail in that order.

I purchased my first app tonight, and although I have to purchase a money identifier app, a Twitter app, and a GPS app, I needed my first app to be nothing but fun. I tried to find a couple free apps Phil got on his phone last year for me to try, but no dice. The word Kaleidoscope in the APP store search field found what I wanted. I tried the lite (free) version, and although the colors were brilliant, they only took up half the screen. Seeing the glowing kaleidoscope on the whole screen was a lot easier. It was definitely worth the $2. There’s an auto mode and a manual mode. In manual, turning and shaking the phone changes the design on the screen. The name of the app for those into colors is Kooleido.
another fun thing has been seeing the reactions of IPhone enthusiasts when I tell them I have an IPhone. people have tweeted “Yay!”, One guy even welcomed me to the IClub. Phil smiles rarely, but every once in a while when he sees me doing well with it, I hear it. My therapist let out a whoop when she saw it. This is completely out of character for her! Blind and sighted are asking to touch it. It is lighter, longer, and thinner than earlier models, and the longing in their voices is palpable. People who don’t have them yet are just on pins and needles waiting, and I guess holding it gives them a bit of foretaste of what is to come.

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First iPhone boo

Last Entry BIp5 (before IPhone5

Phil went to the apple store to upgrade our phones. Originally, we were going to go together, and then I thought, “Why do you need me? You know what I like and the best decision for this kind of thing.” Yes, we are each getting IPhone 5. I know I have laundry to do and a newsletter to edit. I’ll probably have to set those up as my 1st reminders. Part of the reason I’m agreeing to this nonsense is that I really need alarms, reminders, and a good calendar. The Braille display on my Millennium is wonderful for reading, and I probably will continue to use it for note taking — at least until I get comfortable with the little blue tooth keyboard. But a calendar, it is certainly not. There is no alarm, and I was so angry when a date in the calendar wouldn’t go in the right place on Monday it ruined my whole afternoon.

I’ve heard the stories. Usually blind people hate their IPhones for the first two weeks and then wouldn’t live without them. I’ve put every friend who has an IPhone that I can think of on alert that I’m getting one. Some have told me the stories about calling people they didn’t mean to four or five times. Phil said he’d work with me this evening. If you don’t hear from either of us again, you know we killed each other over this thing. SIRI is my friend. SIRI is my friend. SIRI is my friend. …

Rebecca Kragnes and Zane – Black-lab and Seeing Eye Dog
Home: 612-827-2132
Cell: 612-387-5884
Twitter: @RebeccaKragnes
E-mail: rebeccak@tcq.net
Web: http://www.rebeccak.com/

quite a day, and not in a good way.

This hasn’t been the best day in the Kragnes household. Nothing earth shattering, but a bunch of little things that add up to one big oofta! Not sure I am spelling that Scandinavian, Minnesotan expression right, but oh well.

Our reader told us Wednesday night that Zane was limping, and by Thursday morning, we could hear it. I refuse to work my dogs on three legs. I think it looks cruel and tasteless. So it was in cabs we went. I hoped to find a ride at least one way but was unsuccessful. My cab ride from home started out rocky, because the lady was given the wrong address from the dispatcher. However, she turned out to be a sweet driver. She didn’t blink an eye when I asked her to guide me into the clinic, so Zane didn’t have to work. I was also very proud of Zane in the waiting room. There were all kinds of dogs moving arounde the room, and although I could feel he was curious, he was resting on a down.

I had scheduled both a nail trim and a doctor’s appointment, but it was obvious to all of us that the nails would have to wait. When the vet first saw Zane she told me they would be testing for Lime Disease and wondered if I’d found any ticks on him. The amazing thing is that when Zane was turned loose in the small room, he ran around and acted very normal, despite putting absolutely no weight on one paw. After the vet took him in back, she found a small skin infection between his toes. I have some cleansing pads, a few days pain medication, and two weeks of antibiotics for him. I have a feeling this may have started when I put the foot rest down on my recliner and didn’t realize how close he was. I think it probably hit his paw, and things progressed from there. Like many dogs, Zane is very stoic about pain, so it has to really hurt, before he’ll show it. Luckily, he doesn’t bother it enough to require the E-collar AKA “The Collar of Shame” in the movie Up. He was miserable when he had to wear it in the past.

We had help getting to the cab to come home, but the next minutes were the worst. The driver and I had a good rapport, and I paid him before getting Zane and out of the cab. I knew something wasn’t correct when Zane started walking down the block, despite his sore paw. Luckily, I figured out the driver dropped us at the wrong address before he left. To add to the fun, a man was interrogating me about why my dog was limping. We were at 13th Avenue instead of 15th Avenue
I had repeated the address several times — with the driver repeating it back to me — and told him about landmarks like our wooden fence and the disability transfer zone signs. There was no wooden fence where we were for sure! He didn’t listen. I was especially mad, because this “mistake” caused Zane to have to walk more on his paw than necessary. I warned the driver I would be calling the company. He didn’t charge me for my last two blocks, but the whole thing made me furious!

Cab drivers have to do very little except drive, listen to instructions, and know how to read at least numbers. One of the cab company’s owners called to investigate the situation after talking to me, and when he called me back he was extremely apologetic. He said that driver was not engaging his brain and shouldn’t be driving cab if he was going to be that way. I asked for some compensation and got it.

Then on Twitter, a woman wrote about a great collection of baroque music on Amazon for $1.29 for 305 tracks. Baroque is a favorite period for both Phil and me, and I absolutely love it in autumn. I got so excited that I forgot to purchase it in Firefox instead of Internet Explorer. Due to screen reader issues, Amazon MP3 files download automatically in Firefox but not IE. I had a customer service representative reset the music, so I could download it, but instead of the nice automatic downloads of all tracks, I had to do each track manually. Then I ended up with only 303 out of 305 tracks. I searched for titles and just couldn’t figure out which tracks were the missing 145 and 192.

I was still trying to solve the puzzle when Phil came home very motion sick from having a driver likely from Egypt. We’ve learned they drive very jerky and as if everything is a race. I called customer service back, but they were of no help. They insisted that the numbers of each track were right there on the page. Phil reminded me they probably were … as graphics instead of text. That meant we couldn’t access them. Using some fancy tricks, Phil created a table numbering each track, and then I could find and download the missing tracks. The motion sickness went away while he was thinking of this instead, but it came back with a vengeance. I don’t know if Phil will be going to work tomorrow. One thing we’d forgotten is that dialysis isn’t as effective on a catheter. After dialysis from his graft, Phil would come home very hungry,. Now he has lost his appetite and gets sick a lot more easily. Then having a jerky driver in a race doesn’t help.

Zane is to stay off of his paw as much as possible for the next few days. So if Phil doesn’t feel up to going to the restaurant down the block to meet friends Friday night, , Zane will stay home with him and Garron. I’ll take a cane to the restaurant. Otherwise, we’ll all stay home, because I refuse to either leave Zane by himself or walk him even a block on three legs.

Rebecca Kragnes and Zane – Black-lab and Seeing Eye Dog
Home: 612-827-2132
Cell: 612-387-5884
Twitter: @RebeccaKragnes
E-mail: rebeccak@tcq.net
Web: http://www.rebeccak.com/

after surgeries talking with the doctor

The short term news is good. He came out of the surgeries very well. As a reminder, he had his dialysis port tied off to restore circulation in his hand. Before that, a catheter was inserted. Circulation appears to be coming back, although he’s likely to have short term pain. Long term there could still be issues, but we’ll have to wait and see. The hand stuff occurred because of a legion in his ulnar artery. The catheter went in at a similar site to the last one, but not exactly the same. As I suspected, they really can’t repeat sites for those.

The doctor still hopes to put a graft in the thigh area and have that work long term, but she didn’t lie to me when she said that finding dialysis access sites long term is getting tougher and tougher. She said they are coming to the outer boarder of what is ordinary in dialysis access. She said that there may come a day when they can’t find a dialysis access point. This was the most difficult news to hear. In the back of my mind, I knew it, but it’s hard to hear that spelled out in black and white. No dialysis, that’s the end of his life, unless a transplant becomes available right then. In addition, she’s going to refer Phil to a vascular surgeon. Nothing has to happen right away. The arteries are hardening, and having a long term plan in place about how to deal with it is important.

It was difficult to find Phil a ride home, but fortunately at the last minute, a friend of a friend stepped up. I also needed to get a few groceries and walked to the Spanish supermarket down the street. It was closed, so another friend got a few things to tide us over until our big grocery order comes on Wednesday. A third friend took Garron for the afternoon, brought him back to her house for a play date with their dogs, and will be bringing him home around the same time Phil gets here — probably in about fifteen minutes. I worry about Garron being very excited and jumping up in the wrong place, but hopefully Phil will be with it enough to handle him.

Rebecca Kragnes and Zane – Black-lab and Seeing Eye Dog
Home: 612-827-2132
Cell: 612-387-5884
Twitter: @RebeccaKragnes
E-mail: rebeccak@tcq.net
Web: http://www.rebeccak.com/

words and actions

This past Sunday night at the Malt Shop, a guy came up to me and requested a few songs. I did my best to accommodate his requests. I am unsure whether it is that I’m a captive audience, my blindness, or both, but at least once every two or three months I have a well-meaning Christian make sure I’m saved. Some drop tracts in my bowl instead of tips, but most just talk! Many of you know that I am a Christian, but I also believe that my actions speak louder than my words. I think it was Francis of Assisi who said that when doing mission work, “if necessary, use words,” and I try to live that way. Besides, if I used the kind of language most of these people do about the unsaved going to hell, I probably would no longer be married. It’s one thing Phil was very upfront about when we started dating — no pushing religion or Jesus. I’ve tried to respect that while living my faith.

Obviously, the recent news has caused me to reflect and pray more than usual, and while I’m internally using words, Phil is externally using actions to make our life better. Now that our new computer and wireless is working, he had a sighted friend help him wipe the old computer’s drive and reinstall Windows XP. We’ll never trust it as the primary computer, but it makes a great gaming computer and is good for Internet and short-term work. He has it down in his “man cave” as our brother-in-law calls the entertainment room in the basement. After years of not being able to play Uno because Phil can’t read Braille cards, we can finally play Uno and other games in the most comfortable environments for us and choose our own music. He gets warm easily, and I get cold in the basement . Other than doing laundry, I try not to spend time in the basement.
Interacting using computers brings back a touch of the old days, as we met on the net.

Many of you know I love colored lights and have several in my living room. A few don’t have on-off switches, so Phil found outlets with remotes, so I can turn them on and off from my chair. With everything he’s going through, he still thinks of ways to make my life comfortable. Do I wish there were a few more hugs and kisses? Sure, but actions like installing the outlets — even when he has pain in one hand from circulation and the other from being overworked — are demonstrations of his love.

Rebecca Kragnes and Zane – Black-lab and Seeing Eye Dog
Home: 612-827-2132
Cell: 612-387-5884
Twitter: @RebeccaKragnes
E-mail: rebeccak@tcq.net
Web: http://www.rebeccak.com/

the hard news.

When I last wrote to you all, Phil knew he was having trouble with the circulation in his hands. A nurse dismissed his concern early on, but when his doctor heard about it, she immediately schedule an appointment, then an ultrasound, and finally an angiogram to fix the problem. Those things took time, but that’s the way life goes. That angiogram and intervention happened Monday August27, and it was thought the old dialysis port from 20 years ago was cutting off circulation. That was fixed, but the problem continues. Dialysis nurses told him his fingers were starting to turn blue, and his hand continues to be cold and very painful. This past Tuesday he saw the doctor again, and he received some hard news. It is now apparent the dialysis port itself is the culprit for cutting off circulation. This means the doctor will have to do another surgery to tie it off. As circulation returns — the doctor warned him — it’s going to be very painful. Of course, a new dialysis port will bee needed, so his nemesis the catheter will be reappearing at least for a while, and both procedures are going to happen Monday.

For those of you who have walked this road with us before, you remember that dialysis catheters very easily get infected. That lands Phil in the hospital while it is taken out. Then there are two or three days wait, while antibiotics are dispensed, and the infection leaves his body before a new one is placed. Then there’s the problem of where to put the catheter. Because he’s had so many, the tissue in the areas where they normally are placed has toughened. This means that the result of going through it is going to be very painful when Phil wakes up. So he’ll have pain two places. The final indignity is that he has to bathe and wash hair separately rather than showering. Phil’s shower is something he enjoys so much, and the cleaning process plus wrapping the catheter to protect it from getting wet not only isn’t fun but can be frustrating and take lots more time. We are both worried that his quality of life is going to suffer with catheters. His doctor says she’s going to research placing a port in the thigh of the amputated leg. But apparently, this will take study and time. The hand needs circulation now, and the catheter will have to be placed immediately for dialysis.

I don’t know how he can endure all this, and had it been me, I may have given up a long time ago. He took a mental health day on Wednesday, and even though these procedures may mean more absences, I very much supported his decision to do so. The news affected me enough to have a major headache that knocked me out for hours.

Because this could get too long, I’m going to talk about everything else in the next post.

Rebecca Kragnes and Zane – Black-lab and Seeing Eye Dog
Home: 612-827-2132
Cell: 612-387-5884
Twitter: @RebeccaKragnes
E-mail: rebeccak@tcq.net
Web: http://www.rebeccak.com/

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