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

August Update

I’m going to attempt to write a blog entry on my phone. The writing may not be as precise as usual, because I may not catch everything in Spell Checker the way I would on computer. Spacing may also be funky for similar reasons, but oh well. …

Our computer has been acting up, which is causing a few problems around here. Luckily I can do most E-mail on my phone, but there are definitely still things for which using a computer is much easier and more efficient for me. My last few radio shows have been disasters with having to reboot several times per show. The station manager and I both feel it’s best to pause from doing the shows until these issues are resolved. When friends used to be upset, because something like this kept them from doing shows, I didn’t understand before starting to do this myself. I use to think, “Oh, come on, it’s just an Internet radio show. The whole world isn’t going to end because you aren’t on the air.” Now, I understand. Its not just that it’s an ego boost, which I readily admit it is. Planning music I know my listeners will like and fulfilling requests has made me feel useful and like my musical expertise is making a difference. It’s a little like playing a gig, although not as difficult and energy-draining. In fact, after a good show, I often feel an adrenalin rush or high. I know what it’s like to be a listener and have my day made better by hearing just the right song or even more tolerable when I’m not feeling well. I do this at the gigs too, but the money and / or free meal are a little more powerful motivators, because the work is much harder and requires more concentration. Tips have really been way way down to below normal from late June on. It may sound a little crass to say this, but talk is cheap. It’s easy to say how much one likes the music, but a little green applause goes a long way. It’s also difficult not doing radio shows, because I feel I’m letting the station and my colleagues at the station down. A lot of us aren’t able to broadcast for one reason or another right now, and it’s hard to see all these shows in need of cover and not to be able to help at all.

To add to the fun, my body has decided to start playing some tricks on me too. I thought with all the hot flashes, I may be entering Menopause, but other hormones kicked in this month. The pre-menstral depression was crushing. Everything was making me cry, and I have no idea how Phil lived with me during all this. Although people at the station have ideas about how to resolve the computer issues, Phil is the resident expert, and some of the suggestions given by outsiders are way more radical solutions which would require eyes and probably more money than what Phil has in mind. I’m trying very hard not to put any pressure on Phil about all this, because he has enough on his plate right now.

Last week he went in to the dermatologist to have skin cancer cells removed on his forehead and some kind of an encapsulated infection removed on his elbow. The skin cancer is a known side effect of anti-rejection medications, and they likely got all of it. He’ll go back periodically to make sure nothing else has appeared. There has been some residual pain in both locations from these minor procedures. The first day, his fingers were numb, which really scared us based on all the problems Phil has had with circulation in his hands. Work is busy for him ramping up to the new school year and trying to finish other projects, so these hand problems were inconvenient at best.

The kidney has been going relatively well, but there are one or two numbers in the labs prompting an ultrasound of the kidney. The numbers could mean absolutely nothing, or they could be an indication of some sort of tumor. He doesn’t seem overly worried about this, but I can’t say the same. Our overall life is much easier than the dialysis days, but stuff like this just puts me on red alert and continues to remind me that this transplant life is tenuous.

Two weeks ago, I went to a healing service for another transplant patient and friend of mine. About 70 of us showed up , doused our hands with sanitizer, were sprinkled with sage, sang songs, touched her, read poetry, prayed, etc. She had to go through some chemotherapy for cancer, and the chemo was affecting the functioning and perhaps viability of at least one organ. It was a reminder that other people live with this day-to-day numbers game, too.

Phil has come home feeling high from doing a few presentations at work, and I know he’s looking forward to traveling to D.C. for another work project in September. One of his sisters and his parents are in neighboring Gaithersburg, MD, so some family time will likely go along with his work activities.

Meanwhile, I was offerred a part-time job and probably put a post on Facebook about it a little prematurely. The friend who offered the job needs to pass a couple tests before he takes over the business. He’s highly motivated, of course, and I can’t imagine him not passing the tests, but it’s just more “wait and see what happens”.

This past Thursday we had dinner at Buffalo Wild Wings with the “Dinner Delverss” — a group which meets once a month for dinner. Phil and I took two trains and a bus home, and for the third time, we had some problems which turned the trip into an adventure. Announcements at a couple of the platforms were not consistent and sometimes nonexistent. But trying to find the correct bus stop where our bus would pick us up was more of a challenge. The stops or shelters around them have no markings making them accessible to people who are blind and can’t see the signs for the letter of the gate and the bus schedule. The bus to which we had to transfer only comes every thirty minutes, and that night, the first one whizzed on by, because we weren’t at the correct stop.

The last two Saturdays, Phil has gotten together with his “pilot” for tandem rides. The Saturday before last, they went canoing, and this Saturday they rented a paddle boat due to the condition of Phil’s elbow. I know this “male bonding” stuff is good for Phil, and I’m pretty sure it’s helping the other guy, too. Next weekend they’re going to the State Fair. I hate the fair, so I’m just as happy not to go.

On the upside for me, this week I start with a new therapist. My former therapist and I had to stop working together because of some insurance issues in midsummer. Then the one to whom she referred me decided not to take me on as a client, because she wasn’t sure how much longer she would take my insurance. With fall / light reduction coming on it’s probably important for me to be checking in and seeing someone on a regular basis. My former therapist and I have talked to this woman by phone and both had good reactions that she would be a good fit for me.

A long over due update

As is the normal pattern around here, it’s after midnight, and I’m wide wide awake. I was dragging earlier in the day and thought I might be hitting the sheets early, but after the dentist appointment, the day improved greatly! It probably helps that the caffeinated Pepsi I drank, the colored light I’m watching, and the jamming music I’m hearing are mega-stimulation. Our little group who goes out to eat once a month went to Bubba Gump’s Shrimp Company in Mall of America at Phil’s request. Getting around the echoing transit station and even the intense sounds at Mall of America was tricky, but the three of us with dogs followed the one sighted person with a cane-using couple on her arm. I don’t regularly do the Light Rail, and every time I do, I learn something. That was true going from Downtown and again coming back to the station where we caught the bus home. Learning something doesn’t necessarily mean a pleasant experience, but the food and the company made up for it. The salad and salmon veggie skillet over rice was heavenly, but don’t worry. I had to have the bad-for-me calamari and other fried treats in the basket to balance things out — and of coursed there’s all that Pepsi too.

Phil’s overall health has been amazing overall since the infected thumb hospitalization with pain killers which made him sick in late May and early June. Tonight at his bed-time, I had a little blast from the past as he moaned in agony over something he did to his hip. His prosthetic got stuck as we were coming off the train platform, and we’re both hoping the ice pack I brought him and the Tylenol he took does the trick overnight. He has a presentation tomorrow at a conference here in town. Sometime this fall he’s presenting at a conference out of state, which I know he’s looking forward to doing. It’s such a thrill to have him home at night instead of dialysis three nights a week. The kidney and pancreas numbers are good, and he’s doing regular stuff like tandem biking many Friday nights and working out in the yard during the weekends. He’s made two favorites we’ve both missed during the dialysis days. We had a friend over for Phil’s spinach onion lasagna after a trial run in the new lasagna pan which has been waiting close to three years in the cupboard for use. And of course you can’t have good lasagna without some garlic bread! He also had to make sure the blender still worked, so we could have our banana, nectarine, sugar, milk, iced blender drinks —fruit and dessert in a big plastic glass. This last time he substituted a cool cup of Café Escapes milk Chocolate Keurig cocoa for the milk, and that wasn’t bad either.

The first part of the summer was truly remarkable at the Malt Shop on Sunday nights. I was making two or three times normal tips. But the last three weeks haven’t been so hot even though the restaurant itself is very busy.

I’ve also had to transition from the therapist I’ve been seeing going on four years because of some insurance decisions. The woman to whom I was referred the first time didn’t want to start with me, because she’s not sure she’ll be taking the insurance we have much longer. A new office opened in the same building as my former therapist, and they are getting their contract set with my insurance company. Because they are more of a clinic, one very positive thing is they take the flex spending funds credit card. The other woman couldn’t take cards, so we had to write a check and be reimbursed. The new therapist sounds very nice over the phone, and even though it’s tough to transition to a new person, my former therapist used the analogy of retiring a guide dog and then starting work with a new one. I’ve certainly been through that more than once.

So far, the pups are holding steady though Garron turned nine this past Thursday, and Zane will be nine the day after Christmas. Garron is on some meds for arthritis, and Zane went through a pretty severe ear infection and a much-needed teeth cleaning and extraction of one tooth this spring. The sounds of a dog coming out of anesthesia are not for the faint of heart. They brought tears to my eyes. My vet’s office compared the dog’s experience to coming out of a frat party and being so drunk he didn’t know how loud he was. But wow! If anyone wants to hear a drunken Zane, let me know, and I’ll send you the audio files. I think it should be mandatory listening for guide dog handlers who are going to have their dogs’ teeth cleaned. I wish someone had warned me!

Speaking of audio files, this is probably a good place to remind you about the folder I have for my radio shows. Most of them are Blessing Blend my show of mostly Christian music, but occasionally I’ll substitute for someone else who can’t do their show. I should upload those too. If you’re not a Christian music fan, I hope to bring the Keyboard Kaleidoscope to The Phoenix very soon. I’m just waiting for the time of the show to be settled. I’m trying to push for a weekend show, so people might have flexibility about being able to listen live. I appreciate those of you who have tuned in to http://www.the-phoenix.net Wednesday evenings 10 Eastern or Thursdays 3 AM UK time for Blessing Blend. I love being on the air, because I remember how many presenters have made my day a little brighter on their Internet Radio shows. Meanwhile, here’s where you can download past shows.

https://www.sendspace.com/folder/8wsdxw

I continue to be so pleased with the wonderful book club I started over the phone for people across the country who listen to talking books from the National Library Service. Most of us download the books from a site called BARD (Braille and Audio Reading Download), so it’s informally known as the BARD Book Club. We have hbooks planned for the rest of this year and into January of next year. We rotate people choosing a book, and in November, we read a group choice which keeps coming up in discussions throughout the year. Last year we read 11-22-63 by Stephen King on the fiftieth anniversary of that day. We have mostly read fiction, but this September, I believe we have our first nonfiction title.

Technology has been my friend and my foe as always this spring and summer.
Last Wednesday Amazon and I had a bit of a showdown, but thanks to a wonderful customer service guy who actually knew what a screen reader was, we are settled about how to download music. My iPhone continues to be my best friend with all of the ways I can interact on social media. I have two ways of reading books audibly on it, and maybe if Braille displays ever come down in price, I’ll be able to use my iPhone with one of them. Of course I listen to Internet Radio on it, although using iTunes on the computer to transfer stuff to the phone is still beyond me. In addition to the usual Facebook and Twitter, I’ve gotten back into Audioboo. People record all kinds of fun stuff or discuss something on a recording. I still love dice World and have about sixty games going at once, although of course I usually play about one turn per game per day. A friend got me hooked on this Orange Tree game which is not competitive but just fun. An Audioboo also introduced me to a game called Lost Cities. Although it isn’t the accessible Uno game for the iPhone I would love, the colors and numbers emulate that aspect. I have never played Solitaire, but I’m told playing against the computer is like Solitaire. I haven’t played a game against a human yet, but I’m playing the third of four computer “people” progressing from easiest to hardest with some successful wins. I still don’t understand why the game has that title, but it’s a lot of fun! My user name for all games is RebeccaK425. It seems like there are apps for just about everything out there. I read the menu at Bubba Gump’s from an app, and we used another to determine the next bus and train arrivals. I have a cool metronome app, and would really like to be able to record in stereo on my phone. I have a digital recorder which has some speech, but not like the phone. We are due for an upgrade this September, and I’m hoping the next generation might record in stereo. If not I’m doing preliminary research on the best stereo recording attachment for the way I use my phone. I’m slowly starting to think about music ideas, although between the mountains of my laundry which never seem to get any smaller and other things, I’m not at the piano yet. I hope its coming but believe me, I can’t force it. It doesn’t work that way.

Now it’s almost three AM, so it’s definitely time for me to close. I’ll try to blog a little more often than I have, so they aren’t this cotton-pickin’ long!
Read the rest of this entry »

It’s been a busy spring for us, and things are mostly OK. Phil’s kidney is remaining strong and steady. We are worried about his thumb. He’s had a sore spot for a while, and despite bandages etc., it continues to get bumped. It seems to be getting worse, and I believe he plans to get to a doctor as soon as he can this week. Between Memorial Day, taking off for his birthday on Friday, and being booked solid the other days, it didn’t happen last week.

Because our birthdays were both on Friday this year, our group who goes out to eat once a month (informally called Dinner Delvers) celebrated our birthdays with us. Phil chose a bbq place called Cap’s grill this past Friday. He hadn’t been to Cap’s since dialysis, because the fries there would have been too tempting. It was worth it all for him, and he invited his friend and tandem biking pilot Nikolai. I think it’s safe to say everyone had a great time. The only small down side was getting lost at the train station trying to find the bus stop on the way home. One would think there would have been plenty of people around on a Friday night, but it was pretty deserted. I’ve never been wild about the Light Rail system, but with a second line opening this month, someday I’m going to have to come to terms with it. Some platforms are split, while others are single, and connecting to the bus stops isn’t very intuitive – at least for me. Phil and Garron explored, and Zane and I stayed in one place for reference. Once Phil and Garron found someone to confirm where the stop was, the fireworks began, and Zane didn’t care for that at all! Garron was more alarmed by the storms this weekend, while Zane didn’t react.

While some of the storms occurred, Zane and I were down in the basement after I played for Mass celebrating a combination of my priest’s 34th anniversary in the priesthood and his April birthday. It was mostly organized by the Spanish speaking community. The food was super good with a heavy Mexican influence! I loved the music too, but it was too loud to have any conversation. The acoustics of the room made everything echo which didn’t help. I came home with such an awful headache, which made me feel completely old.

I don’t remember whether I talked about eating at Wok in the Park on my birthday in April, but although very different, the food was just as good and the evening fun without the harrowing train station experience. My friend the chef and his sisters sang happy birthday in three part harmony again this year, and the hot fudge sauce on the homemade vanilla bean ice cream reminded me of my Mom’s recipe. We had a bit of a wait for our ride home, but I enjoyed standing and watching their lighted, color-changing awning.

The Malt Shop has been very busy, which makes it all the more fun. Last night I played a song I learned especially for after my friend Eric proposed to his girlfriend Andrea. I may not have the most high-paying job in the world, but I love participating in moments like that one.

Last weekend I went to Eric’s house, and Andrea fixed us a great dinner while Eric and I did a country show on the station where he broadcasts. The day before, I auditioned to be a presenter on another Internet Station, and I learned I was accepted the next day before catching my ride to Eric’s. my first live show is this Wednesday at 10 Eastern, nine central. This will be the regular time for Blessing Blend – a show of mostly Christian music with the occasional song from other genres harmonious with some aspect of the Christian message. I mostly have Contemporary Christian music, but I’ll definitely include some Southern and Black Gospel plus some traditional hymns too. I know not everyone reading this enjoys Christian music, but I’ll have another show in the not-very-distant future centered on keyboard instruments in many genres. I’ll put reminders on Facebook and Twitter for those who follow me there, but in case you want the URL to listen, here it is.

http://www.the-phoenix.net

P

Tonight Phil and I went to see a musical called “Passing Strange”. It’s a Toni Award winner about an African-American who is trying to make it in the music business. The theater has a “Radical hospitality” program on “Access night” where they provide transportation and tickets for people identifying as having a disability. Phil hadn’t been to the theater since he began dialysis and seemed to enjoy it. Unfortunately, the cab ride home triggered the motion sickness he was just getting over after staying home yesterday. That’s the worst health complaint for Phil, because the kidney continues to do remarkably.

Zane was a little antsier than I would have liked. Although I got the general idea of this moving play, I bought the Broadway cast mp3 files to hear more of the subtleties I missed, because we were seated in front of the drums. The audio describer was one of my favorites, but she was asked to move at the last moments before the play opened, so some children could sit together. As a consequence, the receivers of the description were full of static before intermission.

The play highlighted lots of cultural things, but for me it spoke to the tension between the family where one grows up and trying to be the person one was meant to be. It opens with the young musician’s Mother dragging him to church, and one of the resounding themes of the play involved what was “real”. Those disgruntled with church wondered if anything “real” was going to happen and felt constrained by the “Baptist Fashion Show.” The pastor’s son is the choir director, and is a very different person outside of church. He wishes he would have traveled when young, but dad holds the purse strings in order for him to stay put. The young musician moves to the Netherlands and then Germany and gets in with very Artsy folks. His mother wishes he’d come home and be around his own people. Back in church, people thought he acts too white, but in Europe, he tries to pretend like his skin color meant he was poor, into gangs and guns, etc. In reality, he lived in a very middle class area of L.A. Some Artsy people see right through him and call him on it. He’s even more astonished when all of them go home to spend Christmas with their families, despite some of the problems they have with the way their families live for the rest of the year. One woman says her father remembers her loving the blood sausages as a child and tends to forget she’s a vegetarian now. His mother’s death ensures he has to go home, and he faces a lot of stuff about himself in the process.
Despite not swallowing every single thing about the Catholic Church, I’m comfortable with the church I attend here in Minneapolis. I’m certainly not Avant Guard, but I think it’s fair to say that I am probably the most nontraditional person in my nuclear family. Phil and I have the picket fence, and the dogs, but that’s where it stops. No 2.5 kids involved in all their various clubs and activities. No pictures floating all over the place about our latest vacation or our kids’ escapades. We’re still waiting to get a good picture of our new front door. Even though it’s a drastically different situation, I still understand that young musician’s feelings. I don’t go home very often, because I feel very different from the rest of my family members. I’m uncomfortable in an environment in which I have to solely depend on others the way I don’t in our own living space. They are conservative, and I’m liberal. Because of our outlooks, I practically give myself a tongue piercing trying to be quiet when I go home, yet it’s been more than suggested that I’m still too outspoken. I think they may have forgotten that I’m the quiet one, because Phil hasn’t been home with me for a while. He has no qualms about expressing himself within the bounds of politeness. Even he comes back with a slight dimple on his tongue. They live on farms or suburbs, and I’m in the big, bad city. That city for me isn’t so big and bad, because it provides a lot of the services Phil and I need to live as independently as possible without everyone and their dogs in the whole town knowing about it.

After the play, I connected with the describer who volunteered that her family of origin lived in Sheldon, Iowa — not too far from my home town. She even knew about Cleghorn, because she was so close. Although she is a lapsed Catholic, Catholicism seemed freer than the Dutch Reform people with whom she grew up.
And how perfect that we saw this play on Mother’s Day Weekend. I have a lot of ambivalent feelings about Mother’s Day. Oh I’ll be calling my mom like my sisters will, but unlike them, I won’t be getting treated like a mother, because I am not one. I have absolutely no regrets about not being a mother, but the waves of disapproval I feel coming off of some people make me want to run and hide. Ever since living here, I make it a point to rush out of church on Mother’s Day weekend, so no one rushes up to me and gives me a flower for being a mother. Some say Zane is my “fur baby”, but the relationship is more symbiotic than that. We take care of each other.

I am also able to acknowledge that I can be overly sensitive about things like this. This experience was brought home after church tonight when a man from the Knights of Columbus was giving Away Tootsie Rolls in hopes of donations to people with intellectual disabilities. Generally, I’ve tried to avoid these guys after church too, because despite saying “no, thank you” a tootsie roll was always thrust into my hand. Until I saw this guy tonight, I thought they were selling them and wondered whether the Knights gave me the candy thinking I must be one of the souls for whom they were raising money. Tootsie Rolls are one of the few candies I don’t like, but I could have given it to my husband who loves them. At least this guy understood that “No thank you” really meant “no thank you.” I was mistaken about the sale. This Knight was throwing them at people on bikes and handing them to everyone he could — even without the donations.
Tonight’s homily really summed up all of this very nicely. It was about the verse in which Christ says he is “The Sheep Gate”. Father Kevin acknowledged not many people love being compared to dumb animals, but had another thought about what a gate might mean. A gate is a means of protection, but in the verse, it’s also plain that Jesus means that people freely come and go from an open gate. My priest said mothers have a real balancing act to play in this regard. They want to give their children security, and for some of them, tradition is security. At other times, mothers try to set their children free from the nest. Children report feeling stifled by too much security and abandoned by too much freedom. The above suggests that I probably fall a little on the stifled side. But there is that moment unpacking the laundry that Mom has just washed, dried and folded when — despite being back in familiar surroundings —, I have a slight taste of the other side, too. Father’s final thought was that though mothers do their best to strike a balance, Jesus knows the perfect balance between the two.

Finally, let me point you to two blog entries expressing a lot of this. Kathy is a blind, Catholic non-mother like me, but she writes about the different kinds of mothers she has experienced in her 65 years.

http://wp.me/p2znSV-2o

Marvelyne is a sighted mother, but she shares some of the ambivalent feelings she has about Mother’s Day.

http://wp.me/p1Gyi7-l4

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

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