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.

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