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

Archive for March, 2016

Easter, Spring, and hope

A couple weeks ago, I had a medication screw-up, as the pharmacy put the wrong braille labels on my meds. All three medications were anti-depressants, so you can about imagine what that did to my mood. Last week it seemed to reach it’s lowest point right during Holy week when I had four radio shows plus a doctor’s appointment which felt like a big d’l. There were also upcoming social things and of course intense church services. Sleeping and crying were my best friends, as both allowed me to get the icky stuff out and still function. I can feel things starting to stabilize, although sleeping more is still necessary. This really taught me a valuable lesson about making sure the shapes of medication really did change before trusting someone’s braille label. The pharmacy staff were horrified when they learned of the mistake and have instituted policies in which two people will check that the correct braille label is put on the right bottle. There will also be a party who has to log responsibility for labeling in case there’s another mistake like this. It’s such a little thing, but wow can it make a big difference!!!
The four radio shows went great, although I feel better knowing I only have the normal two this week. The doctor’s appointment wasn’t bad but not what I hoped, and the one social thing was wonderful. We had planned a game night with friends last night, as the Malt Shop was closed for Easter. Unfortunately, Phil awoke with a fever yesterday. He had the normal joint aches going along with his fever, but it didn’t seem to last long. He was congested part of the day, but even that sounded better this morning. He’s off to work and seemed ok.
Good Friday church was emotional for me, and I have the feeling it was the interaction between my depression and the solemnity of what was being observed. Phil put gold magnetic clasps on the gold cross necklace my mom sent me last fall, Blessed by Pope Francis. Wearing it on Friday and during three out of four Radio shows brought such comfort for some reason. But it was the Easter Vigil Saturday which is the main reason for my writing. Last year, I attended my church’s Easter vigil for the first time with a friend, and it felt far better than attending Easter morning as I had previous years. On Easter morning, people would ask if I was headed to celebrate Easter, and although some years we put things in place, it still was tough to be in church alone and seeing all these people there with their loved ones. Then there was the music. I have no wish to be in the choir, but Easter is the one time I felt left out of things with multiple instruments and the choir singing. Even at Christmas I’m at the piano, and frankly it radically decreases any sense of being without loved ones with me in church. At last year’s Easter Vigil, there was a procession into the relatively dark church with candles. I’m not a fan of fire, unless I can turn it on and off with a switch. I was afraid of touching someone with the flame or having hot wax drip, so I watched and enjoyed others’ candles. This year, I had an idea about how to be part of things without having to deal with candles. I wore a certain necklace and earrings Phil made for me and entered the dark church. This year there was no procession, as it was raining, so the light was spread from candle to candle first on the alter and then in the congregation. When I felt the time was right, I turned on my wearable art earrings and necklace with their multiple and changing colored lights. Although I didn’t know the people around me (as the friend I went with was a lector), the woman sitting next to me knew me from attending that 5:30 Mass when I am often at the piano under normal circumstances. She was very friendly and really admired my jewelry. There was also a couple of older ladies who ran a running commentary about everything throughout the Mass, and I could tell they really liked my lights, too. I felt a part of things and maybe even a little distinctive with my multicolored, lighted jewelry.
My braille display has to be shipped back for repair, but this morning, I discovered even that won’t be as bad as I envisioned. Months ago, a braille keyboard was dropped from my phone, and it was something on which I dearly depended. Then I got my braille display, and things were better. Just this morning I discovered the keyboard on my phone is back again, so I can quickly write switching back and forth from the braille keyboard to the application in which I’m writing. I’ll miss my display, but it’s better to get it fixed while under warrantee.
We are slowly coming up on the magical time of spring, my favorite season. Before then, I really want to get my laundry done. Between hurting my knee and the depression, it’s been piling up all winter, and as the mood stabilizes, I really want to get it under control before the deck outside becomes seductive. I’m also hopeful that I will finally sit down at the piano this spring too with Phil at work and laundry under control. 

Update / Progress Report

I think we are approaching the current state of normal. The last couple weeks have been somewhat eventful. We dog sat a pet who was very well-behaved. The only issue was that he’s use to sleeping in bed with his humans. Phil and I were not aware of that, and that’s one situation in which Phil’s not having feet in bed with him was a Blessing. If he was awake, he’d invite Henry the dog to his side of the foot of the bed. Notice I said if he was awake. Often I come to bed after Phil, and Henry, claimed my side of the bed. It wasawesome to see Phil interacting with a dog again, and it was fortutous considering the first anniversary of Garron’s death is coming up this week. Phil has been getting used to his new feet for about three weeks, and Thursday he turned them in to be covered to look more leg-like. His endurrance is coming along for the short time he’s had them. He has installed a baby gate and a couple shelves in the kitchen. Saturday night he also took his first fall, and his prosthetist said it would happen. It must happen to all amputees, but blindness plus being a double amputee can make it more difficult. Both of us are ok cane travelers even if we’d prefer to have Seeing Eye Dogs. Phil explained the process of falling far better than I ever could, and those Of you who follow him on Facebook have read it. It had something to do with uneven surfaces. I was more worried about the results, as I heard his cries. I started across the street first, so he could follow my canes taps. The feeling of two prosthetic feet under him is messing with some street crossings, which is something he plans to get use to ASAP. The worst casualty of his fall wasn’t either stump, but an elbow which swelled. It still smarts, but icing it soon after getting home helped. A man and a woman stopped and helped him up and across the street. The man walked us the half a block and through our alley to our home to make sure we made it home OK. He told us his name and where he lived, which isn’t far from us. Despite the myriads of Mark Johnsons in Minneapolis, I think I found the addressand phone number for him and his wife using the Whitepages app on my iPhone. I plan to call, leave a message of thanks and our numbers. They seem like nice people, and despite living in the area for 10 years (just like them), Phil and I know very few people in the immediate area. We were impressed with how many people stopped on this very busy street with offers of help, and it made us feel even better about where we live. It’s nice to have Phil being the cheif cook and going back to being only the cheif dish washer. We do have a dishwasher, but for a while now, things didn’t feel very clean. I always felt like it was my fault for placement of the dishes, but when Phil ran it twice after organizing things himself without the dishes getting clean, we knew it was time to get a professional in here. We pay for a service to keep our appliances going, and our dishwasher needed a new pump. Phil is still using metro for work until we have proof that snow and ice are history for a while. Then he’ll start taking the 23 to his regular bus stop and using his stool there until he builds up the endurrance to walk the five blocks. I think even without the dog he dreams of in his future, he’d still be motivated. I have to say I’ll be more mobile once I have a dog. Cane travel is a fact of life but not very much fun. I did something to my knee a couple weeks ago, and it’s taking a while to recover. It was painful to play piano for three hours at the Malt Shop using my pedal foot, but finally this week I didn’t have that concern. We’re busy with radio show nights, and I’ve covered a Saturday show for the last couple weeks. We’re in a book club once a month, and there’s the week to week meeting with our reader to get through mail. Our volunteer Reader had to move on at the beginning of the year. The guy who replaced him hasn’t been very reliable, and last week we learned he has emotional problems sending him to the hospital and ousting him from the program. We were getting disgusted with how he either canceled last minute or didn’t call at all. A friend is stepping in temporarily, and we’re using several sources to locate a suitable, permanent reader.
For those who have invited us out to dinner, we are to the point where we can start doing things like that again. In some cases, part of the social time of the evening is riding in the car with people. Though Metro Mobility provides us an independent way to get places, it can also be restricting in having to be ready to leave at a set time (even if often they are late). We’ve held off doing things like that, until Phil could walk to and from the car without needing to be pushed in a transfer chair. Until we get our dogs, we’ll take people’s arms and go sighted guide, but usually we’re meeting more than one person anyway.
Speaking of driving cars, Phil is starting to become active in a movement to get funding for researching self-driving cars. They are the wave of the future and could provide more independence for people with all kinds of disabilities who can’t currently drive cars now. I’m certainly for the research, although I’m currently a lot less confident in the technology than Phil and others on the coalition advocating for the research. 

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