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

During late January and most of February, I left home minus something I rarely am in public without —my glasses. This is because between Phil being in and out of the hospital, my phone crashing, and everything which went wrong during that time period, I lost them. I’m great at losing things, and if they are here at home, they turn up eventually as did my glasses. It got me to thinking about my history with glasses
When attending the school for the blind through sixth grade, I didn’t wear glasses at all. Entering the 7th grade in my small town public school, my parents thought it was a good idea for me to start. One thing among many startling changes was how dark the glasses were. I have very little eye sight, but what I have, I like to use, and wearing sunglasses didn’t allow that to happen. I wore them most of the time through high school. P.E. was one of the few times I was visible without them. It’s hard to be much of a rebel when you depend on your family to take you where you need to go. I raised the occasional objection about not being able to use all of my very little vision, but the response from my dad was always the same, “blind people wear dark glasses.”

During the first week at the Iowa Department for the Blind, I broke my glasses. Instructors quizzed me about why I needed to wear them anyway. This was a place where it was ok to be blind, and glasses might be a way of hiding my blindness. I was under blind fold during the day anyway, and if I had an excuse not to wear my glasses, I was all over it! This continued during college and graduate school, but one conversation stuck with me.

A very good friend of mine was treating me to lunch. She’d been my itinerate teacher from junior high through high school, and somehow glasses came up. She described the way my left eye looked as being without the colored doughnut around most people’s eyes. Her suggestion was getting a pair of glasses to soften that unusual look by making the color eye-catching enough to distract from it.

After marriage I started doing gigs and getting into the music. As I made more public appearances, the conversation came back to me, and in 1999, I picked out the slightly tinted purple glasses I have publicly worn ever since, — recently lost and found. Family members told me they weren’t dark enough, but these glasses allowed me to compromise. I’d wear the glasses, but not sacrifice my vision for other people’s comfort.

During the time I couldn’t find my glasses, I decided there were a few more important things going on besides getting them replaced. I went about my business and didn’t feel uncomfortable without them. As soon as I found them again, I had no trouble going back to wearing them.

Something very similar happened with my hair. As a little kid, apparently my hair had no wave to it whatsoever. I tried for long hair, but I just didn’t have the patience to take care of it. The solution for my mother was curly permanents. I didn’t like them! I thought they made my hair look and feel like an old lady’s! I’d swim, and my hair would have a distinct green tinge due to the perm and the chlorine mix. Because my favorite color was and is still green, I thought that was the only good thing about a permanent.

At the Iowa Department for the blind, a teacher described my hair as “ash blonde” which sounded awful. Ashes to me are colorless things, so I had someone help me dye my hair red. I have since learned that my hair has always had red highlights, as I was born a red head. Even though it’s a little darker now, several beauticians have told me people would love to have my hair color. The perms may have taken some of them out, but this red die was hideously orange apparently and with the curls made me look like little Orphan Annie.

College sophomore year was my hair’s transformation. My R.A. was well-known for cutting hair. Her mother was a beautician, and people told me she did a good job. She asked me if I was ready for something different, and I said a resounding yes! It turned out my hair wasn’t completely flat and actually looked quite good short. It even had wave! That’s the way I still wear it, although I tend to go from a military buzz cut to neck length getting it cut only every five or six months especially in winter. It reaches a certain length, and suddenly I can’t get to the beauty shop fast enough. Bangs especially bother me! No matter what the length is, I just brush it back once wet and once dry, and it seems to look ok.
Those who know me well realize that I’m not one to talk about the way I look for no good reason. I would just as soon not focus on it, as I know I’m no Miss America. Somehow I started thinking about my hair and glasses as a bit like ideas of God and how they evolve. Perhaps this is because I read a blog entry in which someone accused the blogger of not being a Christian anymore, because he didn’t believe in X, Y, Z.

Church and God were not things about which I felt a lot of resentment growing up. It was definitely private for a long time —an area I felt uncomfortable discussing. Maybe this is because my God was like my parents. Do what you’re told, and don’t even think of questioning it. A high school search retreat and college helped me reshape my God into more than just an authority or task master. College is a time when people often lose their faith —a bit like my not wearing glasses at all or dying my hair red. The argument goes, why go to church? I can talk to God right here. God is in everything, not a building. Some would say that people throw the baby out with the bathwater by not participating in church or reading the Bible. I have always found some beauty and challenge in both, but I understand that for some people, these things might be associated with severe psychological pain. If that’s true, I don’t think they can be used as vehicles for getting closer to God. Far too often in trying to “minister” to people, they are instead driven away.

It’s only when people are ready to let these things help them for some reason that things come back to center. Most of the time it’s having kids. For me it was the desire to have people comfortable around me while not sacrificing all of my own needs. I hope and pray my image of God has continued to evolve. Although the Bible and my church have continued to be important tenants of my faith, other readings, interaction with people and even the atmosphere around me can also assist in encountering God. I’ve been accused of not being Catholic anymore because I have decided not to follow certain iron-clad teachings. Some teachings seem like those dark glasses or curly permanents. It’s a group of people prescribing what is right for me. I’ve taken a look at those teachings and decided that although they may have been appropriate in the past; other factors have made them not right for me now. One of my biggest measures is whether applying them hurts people. Even though I have always said I’d get my own meatless supper and never forced Phil to abstain because I believed I had to, my doing this negatively affects him for some reason. My priest confirmed God doesn’t want disharmony between spouses because of a church teaching! It bothers me that so many people believe in a one-size-fits-all idea of God. It seems to me that if the Lord created us, God has some understanding about how individual we are and the different glasses and styles we all use to encounter the Lord.

General update

Settling by the fireplace after a scrumptious supper of burgers, Chex mix, an orange, and ice cream, it’s time to catch you up on what’s going on around here. Then if I still have the writing bug, I may write a little more of a reflective piece.

It’s a momentous week for Phil, because he’s going back to work. The kidney numbers keep going in the right direction, and his endurance is slowly coming back. Since that third hospitalization, he lost that fluid in his gut pretty quickly once doctors did what worked for him before. In fact, one weekend, he was in the bathroom at least once an hour and lost 20 pounds! I think he’s excited to get back to a routine. He’ll be taking paratransit for the first week, and I suspect that may go longer. For those not in the area, it feels like the winter will never end. If it’s not cold it’s snowing. If it’s not snowing, it’s cold. Many years we have one or two thaws to get rid of the snow, but not this year. It’s really high, and neither team in this house has been able to do too much winter walking because of that. It’s hard to imagine where all of the snow coming this month is going to go. March is typically the snowiest month of the year. We’re still well into the subzero temps, and normally by March, these extreme temperatures are done.

I think I mentioned in an update that my husband got a recharging doc for my phone bed rail in January. When he was in the hospital, I learned to love being able to listen to music in the bedroom and dozing off to it. When he came home that wasn’t an option, and he understood how much I loved hearing music to relax. The main issue was that the headphone jack wasn’t exposed to use when the phone was charging in the doc. He looked at some Bluetooth headphones which were made for sleeping, but between my sleep mask and the expense, I wasn’t sure they’d work. I already had a brand new stereo pillow speaker stored in a drawer for when I finally broke down and threw the old one out which hasn’t worked right for years. I was down to one speaker which worked. It was ok for books but not music. Late last year, we thought we were having trouble with another Blue Tooth receiver which brings the music and sounds from our computer into the living room stereo. Phil ordered a different kind to try, and when it got here, we had figured out the problems with the other one were on the human end.
I thought he sent the other one back, but it’s now Velcroed to my headboard. I can plug my speaker in to its headphone jack and listen to my iPhone with Bluetooth turned on. Eventually, I’ll listen to books this way too, but I like my sleep timer which isn’t available on the talking book app on the iPhone yet. My husband spoils me so much!

I’ve been slowly working toward Internet broadcasting. I now have a combo of a mike and headphones which seem to produce good sound. With the addition of an extension cord, they do well running to my chair in the living room. This is important, because in addition to loving my comfy chair, the office / bedroom housing the computer gets so cold, especially at night. I want to be able to broadcast in front of the fireplace. I took the next step last week when I applied to a station called the Phoenix where my Keyboard show is likely to fit nicely. Many of the presenters migrated from the deceased MushroomFM where I originally wanted to broadcast. As people and as presenters, many are easy to like. I’m catching other broadcasters who were at Mushroom on other stations too. A consistent R&B station out of Atlanta called PeachTreeRadioFM has become a recent favorite. Then on Saturday nights I catch my friend Eric’s American Music Country Countdown on a station called Now Country, because I really like many of today’s country artists, too. Though I love both stations, the Phoenix allows a lot more variety of genres, and I definitely want my Keyboard show to encompass several of them. This Monday I work over Skype with my mentor who is setting me up and teaching me the software.

This Tuesday, we have the gas guy come to tune up the furnace/A.C. My friend Catalina is also coming over with some bulbs for our Scentsy warmers. She was here last week and gave me some pomegranate perfume as a totally unexpected gift. She was so nice to ask very gently if she could visit, and it made me realize I haven’t had people over as consistently as I used to. I have also stopped talking on the phone as frequently too. I’ve been so stressed out for the last year or two that I sort of isolated myself to try not to put any of that stress on anyone else.

Another visit from four people on Valentine’s Day also brought this to mind. Last fall, I started being a part of a group going out to dinner once a month. We’ve informally called ourselves the Dinner Delvers. Phil joined us in December, and we knew he’d be a lot more of a regular with us when dialysis was no longer an issue. We weren’t sure how Phil would be feeling, so we decided to have everyone who could make it come here. We had a great evening ordering delivery, eating, and laughing around the table and the fireplace. None of them had been to our house before, and it was so great to hear how much they liked it. February 14th marked the eighth year we’ve been here. Sighted people tell us all the time how much they love the wood work and other visual elements, but it was cool to have totally blind people tell us how cozy and friendly it felt in here.

I have two things to end this entry. We’ve tried to slowly get back into not doing quite as much delivery as we used to when Phil was on dialysis. However, there are certainly things Phil has been craving since he can finally eat them. We haven’t been able to order from many pizza places, because many don’t have a white sauce. Tomato sauces are high in things Phil wasn’t able to have during dialysis. I haven’t exactly argued against red sauce either. Apparently during the intervening two years, Papa John’s introduced a terrible temptation called a family sized Chocolate Chip Cookie. We’re talking warm, gooey sinfulness!

And speaking of sinfulness, Lent starts Wednesday. I feel like in some ways I’ve been in Lent for a while, but no… Anyway, I stopped my priest tonight asking for “the usual”. I had to remind him “the usual” was my dispensations from abstinence. For years at our house, Lent was a tense time – particularly Fridays and Ash Wednesday. Phil would come home craving a hamburger, and I said “Go ahead. I’ll find something else.” He’d realize why, and he’d hit the ceiling talking about how the Popes just wanted to get more fish sold. When my current priest came onboard, I explained the situation, and he reiterated the point again. “Remember, your marriage comes first.” But tonight, he had an addition as I was heading outside. “And not falling on this property comes second.”

Catching up my readers

Hello blog readers.

I honestly don’t remember when I blogged last. Life has been kind of crazy. Phil went back into the hospital super Bowl Sunday. I only mention it, because it was hard to find a ride to get Garron back home to me. Phil wasn’t expecting to be admitted when he made a clinic visit, but the bloating was just on much.

It was discovered during his stay that the bloating is due to pockets of fluid in his gut. Then it took another day to convince doctor’s to try a medication which had worked getting fluid into the system where the kidney could help get rid of it. Meanwhile, Phil asked me to keep Garron at home, because he felt he had been uprooted too many times in the last weeks. I skipped my Malt Shop gig, but on Super Bowl Sunday it’s pretty dead there anyway. I had my Tuesday appointments by phone, and Phil got home Wednesday evening. This was just in time, because I had an appointment on Thursday I had rescheduled three times. I had to go, and I was not looking forward to hearing Garron cry due to being left alone in the house.

As for the bloating, some of the fluid has exited, but there’s still a lot around his middle. It’s hard to be motivated to drink as they want him to do when he feels so bloated to start.

Both of us had tempers snap today, but stress will do that.

Phil was already backing at the clinic today, and although the numbers continued to come down during the hospital stay, they’ve stopped moving which has everyone concerned. Doctors adjusted his medication, and he has to return Monday. If they haven’t moved by then, a biopsy may be scheduled. Nobody wants that, so if you pray, pray for lower numbers.

Speaking of prayers, a friend of my wrote a blog entry to which I’ll provide a link at the end of this one. I have had very similar experiences to hers, and it’s nice that she’s written it so succinctly yet clearly.

http://wp.me/p2znSV-24

Admitted to hospital again

Here’s the latest. Phil went to clinic where they tried severl things to unlock the traffic jam in his intestines. Nothing seemed to work so he’s been admitted to the hospital yet again. The nurse just read me doctor’s notes saying there’s no visible blockage in the latest set of X-rays. Yet other X-rays show something very different. one of Phil’s coworkers who brought Garrn home to me can clearly see how distended the stomach is. Garron will remain with me and Zane this time. Phil doesn’t want him outside of the home environment. This means I’ll have to do appointments by phone or reschedule them. I had to cancell my Malt Shop gig because of this, but if I had to miss, tonight was a good one to skip. The superbowl has most people’s attention anyway. I’m a strange combination of worried and angry. I saw improvement after some interventions, and then things took a bad turn last night. Hopefully Phil can advocate for himself to get what he needs. I can only do so much by phone here.

Phil is home!

Phil got home around 7:30, and Garron got here around 8. It’s nice to hear Phil singing in the shower. We’re both perturbed that nothing seems to be done about the abdominal swelling. A very informed pharmacist also recommended Phil not take one of the medications prescribed for what is at best a very questionable diagnosis. The medication is cleared through the kidney and has nasty side effects some of which do not go away after taking it. The pharmacist is willing to put in Phil’s file that he recommended not taking it. That’s a pretty convincing sign for us that it’s serious. Phil sees a home health nurse tomorrow and has a Eurology appointment on Wednesday. He has decided to forgo the Foley catheter at least until he goes Wednesday, and I suspact they may have a tough time convincing him to wear it. the … areas involved are quite sore, and he doesn’t even have to make a conscious effort to visit the facilities more frequenthely. Though it’s slow, the kidney numbers continue to go in the right direction. Aside from the swelling, which is pretty uncomfortable, he’s ok, and obviously, the hospital wasn’t doing anything to rectify that. We’ll see what eurology has to say on Wednesday.

This is not going to be long or fancy, because frankly I’m tired. Phil had scans on his stomach, and results hadn’t returned yet. Tomorrow he’ll have a neuclear stress test on the heart, and I’m guessing it will come back fine. Then he can be transferred to a transplant floor where they can find the answer to the real problem of Phil’s distended stomach and the likely extra fluid which is putting stress on the heart. I may try to see him either tomorrow or Saturday depending on how things go.

My physical was about what I expected. I’m very tired, but am glad I attended my well spouses support group tonight.

Well, it’s just Zane and me, as I had Garron picked up by his puppy people. This day hasn’t been one of the best in the world. It started with not getting much in the way of sleep last night. Over the weekend Phil started complaining of abdominal swelling and bloating. At clinic many of the kidney numbers were going in the right direction. It was the weekend and MLK Day, and the doctors on call didn’t seem overly concerned about the distended stomach like the nurses who were. Then yesterday a bladder scan showed that not all urine was exiting, so a Foley Catheter was inserted to make sure it did. A straight catheter was suggested. This would have meant every time Phil had to use the bathroom, he’d have to catheterize himself to make sure he got it all. A Foley is a catheter which stays in more until things are straightened out. It attaches to a bag which is emptied of urine. The day bag goes around the ankle, and the overnight bag is bigger. However the tube for overnight does not allow for very much body movement. Phil has had plenty of Foley Catheters in the hospital. I’ve never heard him complain about discomfort with it. I grew concerned last night as he said it was uncomfortable. It was also getting harder over the past days to bend over and grab dropped objects or even tie his shoes. Then there was last night! I’ve had many dialysis nights of trying to wait to go to bed until after Phil settles down. Waiting also means not having to get out of bed to go get stuff for him. Last night it got later and later with few signs of settling down. I felt like a traitor when I kept having thoughts that Phil really needed to be in the hospital instead of here. The overnight bag was a lot less comfortable than the day bag. He just couldn’t stay comfortable in bed between the Foley and his distended stomach / bloating. The plan was to keep him on this Foley Catheter until he could be fit in at Urology middle of next week. The visiting nurse who took his Labs noticed the distended stomach but didn’t make any recommendations. He was due to go to clinic tomorrow. He ate a little, but it kept getting worse as the day went on. i said that if I knew who to call and talk to about this, I would. I felt strongly that he shouldn’t have to be so uncomfortable for a week — groaning in the day and crying at night — simply because he wasn’t able to be fit into a schedule. I had the idea of him talking to his transplant coordinator and even offered to do it for him. Phil talked to her, she made calls, and it was recommended he go to the ER. A friend took him for me, because a cab ride sitting in back sounded far less comfortable to him with everything going on. Garron stayed here with me, and we both had a good cry on the floor. I couldn’t find what Phil wanted me to find toward the end and even had trouble putting his shoe on. He left here about 2:45 and was admitted around 7:00. I briefly talked to the nurse who said that his admission was due to his high level of Triponen (SP) which indicates a heart attack or heart stress of some kind. Both the nurse and I are guessing the extra fluid onboard is probably the main cause of this number. So tomorrow I do this physical exam. I hope it goes as well as the dentist did. My rides are not ideal. The appointment is at one thirty, and they couldn’t get me a ride home until 4:30. Then tomorrow night is the support group. I definitely need it after all this stuff. Leading to Phil’s admission.

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