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

Archive for May, 2015

Spring Update

I feel like it’s been forever since I blogged. I like to have time to write when I’m not interrupted, and I haven’t been able to count on that very much. I have a show later, so didn’t join Phil at a friend’s graduation. It seems like I’m either exhausted, depressed, both, or trying to chase my tail to catch up. I have taken time to go out in the sunshine while the lilacs are out, but even then, I’m listening to someone’s show live and can’t focus on writing. With a recording in the background and no expectations from the presenter for feedback from me, I finally have a few minutes to catch up.

I’m not sure I’ve even written since the Stevie Wonder concert which was so needed with everything going on. I’ve had to adjust to “wheelchair time”, meaning everything takes longer for Phil to do while in a wheelchair. That night Jennee and Steve had to learn how to assempble and disassemble it to go to dinner and then the concert.  Phil’s wheelchair got us upgraded to the 28th row  from the front on the main floor, and even though Stevie started 23 minutes late, he went until midnight. I’ve seen a lot of wonderful concerts, but this one was probably the best. Even at 64, Stevie sang everything in its original key. I had seen India Arie in concert by herself, and it was awesome to see her duet with Stevie on songs on which  he originally overdubbed his own harmony. After it was over, I sat down in my seat and bawled like a baby!
Our friends Jennee and Steve got engaged that night. Phil and I new it was coming, and I really thought I’d told Phil when it happened during “Knocks Me Off My Feet” at the concert, but … I guess not. Jennee and Steve are new friends, but they have been a very great part of our getting through these hard days. A couple weeks ago, they came over with cookout fixings and used our grill. The four of us sat out on the deck for a few hours and just talked. Phil used crutches to get up and down the steps and across the deck. Steve helped with groceries when Phil first got home and they both helped me with them when Phil was in the hospital. 
Another new friend DeAnna came over for a talk. She’d given Phil rides home, but the friendship truly became a lot more the day she came to get Garron to try to get him veterinary help (and he died in her back seat). The three of us talked about what happened in detail over tea on a lovely April day.
My friends Kathleen and Kathy from church have also been helpful running errthes a lot more quickly than the bus would allow and even pitched in hear when we couldn’t find help with things. We are still very thankful for those who donated to Phil’s ramp page, as that ramp will be here for a long time. 

We are both still hopeful’ we can say goodbye to it by fall, although to hear Phil talk, he thinks it will be more like late summer. Of course, this is the same man who finally came to terms with the fact he would not go to a day long conference in DC June 8th. He bought a “rollaitor” (a combination of a walker and a wheelchair) for the trip, but it will still get plenty of use. It’s making its debut today at the graduation, because unlike the chair, it folds up small and is very light. Phil has attached reachers, holders, covers and even a pair of speakers to his wheelchair to make more comfortable a chair in which he needs to spend a lot of time. At first, I thought perhaps these were overendulgences, but I’m learning that they are necessities given the amount of time he spends in it. 

Just yesterday, our friend Catalina came over to spend a few hours with us. I’m thankful for friends who ask if they can come over, because it’s really hard for me to ask right now. Sometimes the chaos and unpredictabbility of our house makes me feel concerned about trying to schedule social things. For instance, last Friday Phil attended an appreciation day for access assistants at work. The Nurse was late, and the ramp man showed up to modify the ramp. There was barely time for lunch  before his ride. Most of the home health nurses have been wonderful, but whoever schedules them is not wonderful. Phil alerted them about these graduation plans yesterday, but they’re coming over tonight due to not being scheduled this morning. This means I’ll have to do at least part of my show from the office. In spring and summer it’s usually not a probalem, but we’re having a little cool snap in which the fireplace would feel very good!
I changed radio stations since last blogging, and I’m having more fun than ever before doing shows. The new management team is treating me like I’m valuable, and unfortunately, I didn’t feel valued where I was. My Blessing Blend is still on Thursday 3 AM UK, 10 PM Eastern Wednesdays for three hours of a lot of Christian genres. There’s a replay of that show on Sundays, 5 PM UK, 11 AM Eastern. Keyboard Kaleidoscope is still on live Saturdays 1 AM UK, 8 PM Eastern Friday Evenings. There’s a replay of that show on Tuesdays, 9 PM UK, 4  PM Eastern. To listen, point your Web brousers to  or look for Ultimate Radio Experience on your radio apps.
My birthday celebrations were quiet. I did get to go out to dinner at Wok in the Park restaurant the Tuesday before and did a cool birthday song show highlighting a lot of songs I remember from past birthdays. I played for Mass that day and made plans to hear a couple radio shows in case Phil wasn’t feeling good. He wasn’t for at least part of the day and during the time at the restaurant.  We had a wonderful supper delivered from Noodles and Company and the Bite Squad.  the  dinner group which celebrated with me at Wok in the Park is going to celebrate with Phil the Tuesday before his birthday. We hope to organize another event for a few friends on the evening of his birthday. 
Phil  continues to have a lot of pain at times.  The wound is getting smaller, and he is off the wound vac, or as he calls it, “the pump”. He was attached to this device with a hose, and it drove him crazy. The daily struggles with the wheelchair and movement in this small house in general make him understandably frustrated.  We’re going to have to have some professional help geting some of the baseboards restored, because maneuvering the chair in carpet has caused some collisions  — especially turning and lining up with doorways.   Then we have things like the doorbell go out with batteries needed in April. We were waiting for our tax preparer and didn’t realize he was standing out there ringing and ringing. It was the day before taxes were due, and we got ours in the nick’ of time. Then last week the outside doorbell quit pairing with the perfectly working intercoms.   Phil looked at getting another system like that, but instead found a doorbell which works with an app on our phones. It will be great when we get used to it.   He’s also put up a temporary mailbox, so we could access mail without having to find a way under the temporary ramp. All this and other little things meant me getting tools from the basement, and although I know the difference between a hammer, a nail, and a saw, there’s not much beyond that. So phil not only has to describe in excruciating detail where things are but what they feel like. And sometimes I even get that wrong. Phil has discovered he can set up his own shower, and that’s probably a good thing. Now it’s second nature, but I messed it up a couple times. The hardest thing in getting clothes is managing his belts,, and although I definitely still mess it up, it’s getting easier. There are times when the shouting  about the struggles, the complaints about my mistakes, the unexpected, urgent requests  to do something when I’m on a tight schedule,  and the painstakingly long times it takes to do things in a wheelchair make me feel frustrated, devalued, and depressed to the point that I start wondering if Phil would be better without me around. Nobody panick. There’s no plan. Just thoughts. . Getting out of the house helps, and sleep is a very nice escape. I’d be embarrassed to describe the state of my laundry. Let’s just say it isn’t getting done, and that has to change very quickly. otherwise I’ll have no clothes to wear. Considering how often I need to get out of the house in the next few days, I’m going to have to do a couple loads at least. 


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