Challenges

I had someone tell me once that she doesn’t like to read my updates, because they are depressing. I can understand that, because I do tend to write about our struggles. This update is particularly filled with struggles, so I’ll just warn you right up front!!

Last week, Phil landed in the ER twice. The first time was Tuesday with one of his pain spells. Its muscular pain which he can predict after some activities, but other times is unpredictable. On his way over, he relieved Garron and somewhere in the process of bending or standing with a bag of poop, he hit his head on a tree. The one good thing about that was that the doctors were able to see how packed his sinuses were from doing tests on the head injury. He also got some help in which the person didn’t pay attention to Phil saying the dog would follow him. He came back to walk beside them, which forced him and Garron further out into the street. Phil was hurting already, but when he was grabbed, that was the last straw. I’ve been in these kinds of situations without being in pain, and I hate being grabbed — especially when I’ve given explicit directions that the best way to help is to let the dog follow! Anyway, once at the ER, he got pain medication and tests were run. Doctors want him to get massages, but we don’t know if insurance will cover it. He’s getting some sort of massage pillow for his office. He has a couple of things here at home for lying down and a more permanent cushion for sitting up. However, it’s not comfortable to have in his office chair when not being used.

I had planned to go out with some friends when he landed in the ER, and aside from taking an unexpected trip to the bank, I didn’t cancel those plans. We ate at Macaroni Grill — a place I absolutely love, because of their build your own pasta. Phil isn’t as crazy about it, because there are not many dishes without something in them he wants but shouldn’t have. This group has decided to try an outing once a month. It was the most fun I’d had away from the house in ages! We all rode home together, and I was the first to get dropped off. It was quite the downfall from laughing and joking one minute to hearing Phil crying very loudly the next. The combination of the pain medication and riding to and from his limited dialysis run had made him motion sensitive to the point he got sick at dialysis. I knew it was going to be a long night, has he had to let the anti-nausea drug do its work and sleep it off for a while before he could even begin to think about taking evening medication. He wasn’t up to putting it together himself, so I read the braille and put meds in his evening, morning, and mid-day medication cases. Then I brought him some water and his evening medication. I took a sleeping pill that night, and that helped me settle down. Wednesday kept him home from work between the motion sensitivity and the pain which prompted another trip to the ER the next day.

Thursday’s ER trip was prompted by some pain in his side, which he is still experiencing after last Monday’s attempted biopsy of the pancreas. He wondered if something had been pricked which caused internal bleeding. There wasn’t a transplant physician who could see him, so the transplant coordinator told him to go to the ER. Nothing unusual was found. I say they attempted a biopsy of the pancreas, because they didn’t get any pancreatic cells. His numbers came down in his last labs, so Phil will have to be heavily persuaded to let them try another biopsy after how much this one has continue to hurt.

He was able to see the results of the ultrasound done on his natural foot, and circulation doesn’t look good! Usually it’s around 100, and down in the 60’s isn’t very good. A couple of his toes registered 19 and 20. He’ll discuss this at a doctor appointment he has in October. He isn’t feeling pain in his foot, but the lack of hair growth alerted him there could be problems.

Tomorrow he starts systematic desensitization therapy on the finger. That doesn’t have the constant pain it use to have, but if cold or too much pressure hits it, he still experiences a great deal of pain. Next week, he’s going to have a nerve block which will block the pain from occurring but not sensation in the finger itself.

I was supposed to have my physical exam the week before last, but my doctor had a family emergency. Now that’s scheduled for November. My medication is keeping me from the chronic crying, but everything happening plus the loss of light is making me very tired! I probably need to start with my Light Book very soon! Thursday’s ER trip sounded like they could admit him. That meant I’d have to figure out how to get Garron back here and take care of both dogs. In case that happened, I took a very long nap, so my mind would be clear enough to make the right decisions. Fortunately, Phil was not admitted.

More bad news came in the mail, and I’m still trying to resolve it. Before our new security system was installed, our living room motion detector went off when neither of us was here on a Sunday, because the battery was low. We got a letter saying that because of the expense of the police coming here, the city charged us $30 for the first offense. It would be $100 the next time and $200 the time after that. We had it happen again twice the next Tuesday, but the police were not called either time. That’s when we were sure it was a battery problem. Phil believes that because we couldn’t see a battery low indicator, we should not have to pay this $30. I feel funny “playing the blindness card”, but he does have a point. Sometimes it feels like we’re having to fight everything and everyone, and that’s hard. I’d probably just pay the stinking $30 and not fight it, but Phil is absolutely correct about the circumstances.

I recently had to push pretty hard against something which again wasn’t my fault. I scheduled a Metro Mobility ride home from the coffee shop where I often meet a friend, as I had heavy things to carry. The driver had the address, but the address covered several buildings. Usually I’m pretty careful to always say the name of the business in addition to the address. I was given a “no show”, and 3 of those in a month can get service suspended. Usually if the ride is 30 minutes or more late, it’s a free ride. Because they had to rebook the ride, I had to pay. At first when I called, they only took off the “no show”, as I pointed out that the reservationist had some responsibility for asking for clarification. When we book a residential address, they ask whether it’s a house or an apartment. I’ve also heard them ask what is at the address when it wasn’t clear. I encouraged them to go back and listen to the recording of my call. As I suspected, I said the name of the business. The reservationist didn’t put it in correctly. I did receive a ticket in the mail for a free ride.

Phil had his share of trouble with transit last week too. On Thursday night after dialysis, he was patiently waiting for his ride and finally called after almost 30 minutes. No one told him his ride had already arrived. The person told the driver Phil was due to be ready in two minutes, but his graft started bleeding and he had to wait to receive some medication. Metro only has to wait for five minutes, so Phil was “no showed”, and the guy left. Because of the entire hubbub, the person who told the driver Phil would be ready in two minutes forgot to tell Phil his ride had been there. He told the director of the dialysis center about this situation, and she said this would not happen again.

Then on Friday despite the fact Phil was at the correct bus stop, his city bus left him without stopping. When someone tells us the bus is two buses back, I tend to stand at the stop and wait for them to pull up rather than making my dog do the guess work and going through people. That day, Phil chose to go back and try to find the bus. In so doing, as he walked to get on, the bus pulled out and went around the other buses before he could get there.

I hate ending an update with bad news, so I’ll find some positive things to say. I’m slowly moving along on learning the SPL software I need to know to broadcast on the Internet radio station. Long ago, I had a terrible experience with a media player (which plays CD’s, mp3’s, videos, etc.) called Win amp, but it needed to be installed to run the software. I had used Windows Media Player constantly for years, but lately that program has been giving me problems, because something seems to be wrong with it. All my blind friends said Win amp was the best, and now that I understand the basics, I made the switch. This may make it easier to tag my files, so they appear in the title bar correctly, but there are some CD’s I will probably re-rip to get better sounding mp3 files for the show.

The dogs are healthy, and as I did some errands downtown, I noticed Zane had a lot of zing in his work with the cooler weather. I have to admit that I enjoy being out now that it isn’t so hot. We turned our heat on, because there were a couple nights it got nippy. It’s easier for me to sleep at night when it’s cooler, which is another blessing of fall.

Health and Technology

Well, let’s get Phil’s health news out of the way; because there are a lot of challenges write now. Last week, he had an ultrasound on his good foot, because there are probably circulation issues. He has no pain there, but he noticed his hair stops at a certain point on his ankle. This didn’t used to be the case. Then he has had a combination cold and sinus infection for the last week and a half with a bad cough which has made him miserable. Before that he was experiencing intestinal issues, and he’s been taking antibiotics for both conditions. He has a bursa which is rubbing on the prosthetic and is causing a lot of pain, and let’s not forget the finger which he saw the pain clinic to address. He’s also being referred to get massages, because of neck and back pain. Twice this summer, he’s had to go to the ER from work, because of pain which starts in his eyes and then travels throughout his neck, back, and chest. If he can catch it early, stop what he’s doing and breathe deeply he can head off going to the ER. If it gets bad enough for an ER trip, all they can do to get rid of this is knock him out for a couple hours with some good pain meds. Finally, yesterday he he had a biopsy on his pancreas, because the numbers are higher than they would like. They will have results of that in the next couple days, and I’ll update you about that. They want to make sure rejection or anything else isn’t happening there. All of this has meant lots of days at home and scheduling same day cabs to dialysis. You can imagine all of this is causing a lot of mental distress, but people at work have been very understanding.

As usual, technology is helping us in life’s battles. We just got an upgrade to our security system. Apparently burglars are getting smart about alarms which go through the phone lines and cut them before breaking into the house. The new alarm has a cellular chip, so they can’t bypass the system.

On September 23rd, I’ll have had my iPhone for a year, and wow what a difference it has made! I’m still learning after almost a year and loving most of my discoveries. For example, I use my MBraille app and a journal app to keep a personal journal. This was prompted by my concern that the blog entries I sent by e-mail were not complete. It’s frustrating when an e-mail to WordPress — the blog provider — about this issue doesn’t receive an answer from anyone but a nice community member who says there’s a bug in the system. However, thanks to Twitter and the iPhone, I now have a solution. I can write on the computer and then paste the text to the iPhone clipboard using an app called Lazy Text. Then I take the text from the iPhone’s clipboard and paste it into the app provided by WordPress for blogging.

An iPhone app called Downcast allows me to take podcasts with me on my iPhone, and most of them are from an Internet radio station called MushroomFM.
http://www.mushroomFM.com

A friend is helping me set up the software used to broadcast on the station, and it is my hope to have a show on the station at some point. I have to write a letter of application, have a Skype interview, and then audition to other staff members to have a show. But first there’s the matter of learning the software well enough to see how to circumvent any bugs by my set-up, create playlists, and present shows. It’s also motivating me to get some of my music tagged and ripped better from CD’s. the show I want to do will feature mostly music with prevalent piano, organ, synthesizers, or other keyboard instruments and will cross many genres including a couple I don’t hear too much currently on the station. If I can negotiate the time like I wish, it will be on at ten on a Friday night, and for all of you who go to bed earlier, podcasts of the show will be available within 24 hours or so of the broadcast’s finish.

Though I am not looking forward to the loss of light, I am welcoming the cooler weather of fall. This summer has been so hot, and the construction in the city has been almost as bad as the snow setting up barriers to get from point a to point b. GPS and bus time apps on the iPhone help, but despite Zane’s best efforts, I took a fall a couple weeks ago. I was stiff and sore the next day but it wasn’t as serious as it could have been. Instead of the usual ramp up at the corner, there was a depression with lots of cones, bags, and other obstacles making it hard to get out of the street.

Phil’s pain and the resulting crying out continue to make it difficult to get a good night’s sleep, so I do sleep during the day. I have a new sleep medication to try, and I’ll especially take it when Phil gets home from dialysis on Tuesday and Thursday nights. We have been fortunate that he almost always gets a Saturday morning slot now, so we can meet at our favorite restaurant for supper on Saturday nights after I go to church.

Are Reality and Kindness Opposites

We tell people to face reality, and usually this means something negative — often about other people. I have certainly felt this jadedness in my own life more and more as I age. But it gets worse. Apparently, people enjoy “reality TV” as their entertainment.

If I had cable, the Lifetime Network would probably be one of my favorite channels. There movies often have warm, fuzzy endings despite the cold, prickly “realities” of the world. But even they are now getting into “reality TV.” I watch commercials as a means of replenishing my bonus points on a game I play without paying for them with money. Lately, there’s been this add for “Abby’s Ultimate Dance Competition” on Lifetime which just blows me away.

Two mothers begin the commercial by saying, “This is your moment” and “You have to prove something to day.” Then you hear this woman with a horrible, gravelly voice say that “eliminations start now” and “I’m here to find a star”. In another seen Abby says, “You have to battle me!” and then begins to make grunting noises like she’s exerting herself physically. Abby’s final quote in the commercial is “Today is not your day.” As disparaging as this is, there’s more. One daughter is asked whether she can handle this competition , and she softly says, I Don’t know.” But the worst of all is a mother who says, “My daughter is better than your daughter, and your daughter, and your daughter! The whole commercial makes my stomach clench, and you’d better belief I wouldn’t be watching that garbage even if I had cable.

Do we really enjoy watching people knocked down, kicked out, fired, eliminated, etc.? Competition is one thing, and when “The Singoff” (an a cappella group singing competition) was on, my husband Phil and I enjoyed the competition, the music, and the behind the scenes footage. Yes, there was pressure to compete, but the show always opened with all of the groups singing a song together. I can only assume they wanted to encourage some colleaguiality among them. Phil theorizes that “reality TV” is away for people to be passive aggressive. Maybe I just feel too much. Part of it is probably that I had my share of verbal abuse, being yelled at, being shamed — whatever you want to call this — as a kid. Honestly, it happens now too. I’m really trying to work on standing up for myself and not letting others verbally walk all over me. It’s disturbing to me that people want to watch it, because all it does for me is makes me feel small.

I have a memory of playing with my dolls or imaginary kids as I was their teacher. I did nothing but yell at them, threaten them, shame them , and even beat them. My mom came to ask me to stop it. I imagine it was difficult to see her own child mimicking some of the behavior I was experiencing at school. That was over thirty years ago, and I know things have gotten so much worse.

Despite all of this, there’s a part of me which believes this unkindness is not “reality” or at least not all of the time. A friend sent me the following link, and whether you are a person of faith or have none, as bad as things sometimes are, it’s hard to argue with this as a piece of truth. I almost wrote “ideal”, but an ideal is something which is never true. The below is the other side of reality not depicted in these programs.

http://premiere.whatcounts.com/t?r=1395&c=924471&l=35821&ctl=16DCD69:D50BB91EBFAB5850188245B98B9EEE5CB4B847859706E37D&

Just in case the audio can’t be heard, I’m going to reprint this as the end to my entry. I hope posting the above link is enough evidence that I am trying to give credit to the original writer.

***

There is a kindness that dwells deep down in things; it presides everywhere, often in the places we least expect. The world can be harsh and negative, but if we remain generous and patient, kindness inevitably reveals itself. Something deep in the human soul seems to depend on the presence of kindness; something instinctive in us expects it, and once we sense it we are able to trust and open ourselves. Here in Conamara, the mountains are terse and dark; left to themselves they would make for a brooding atmosphere. However, everywhere around and in between there are lakes. The surface of these lakes takes on the variations of the surrounding light to create subtle diffusions of color. Thus their presence qualifies the whole landscape with a sense of warmth and imagination. If we did not feel that some ultimate kindness holds sway, we would feel like outsiders confronted on every side by a world toward which we could make no real bridges.

“The word kindness has a gentle sound that seems to echo the presence of compassionate goodness. When someone is kind to you, you feel understood and seen. There is no judgment or harsh perception directed toward you. Kindness has gracious eyes; it is not small-minded or competitive; it wants nothing back for itself. Kindness strikes a resonance with the depths of your own heart; it also suggests that your vulnerability, though somehow exposed, is not taken advantage of; rather, it has become an occasion for dignity and empathy. Kindness casts a different light, an evening light that has the depth of color and patience to illuminate what is complex and rich in difference.

“Despite all the darkness, human hope is based on the instinct that at the deepest level of reality some intimate kindness holds sway. This is the heart of blessing. To believe in blessing is to believe that our being here, our very presence in the world, is itself the first gift, the primal blessing. As Rilke says: Hier zu sein ist so viel – to be here is immense. Nowhere does the silence of the infinite lean so intensely as around the form of a newly born infant. Once we arrive, we enter into the inheritance of everything that has preceded us; we become heirs to the world. To be born is to be chosen. To be created and come to birth is to be blessed. Some primal kindness chose us and brought us through the forest of dreaming until we could emerge into the clearance of individuality, with a path of life opening before us through the world.

“The beginning often holds the clue to everything that follows. Given the nature of our beginning, it is no wonder that our hearts are imbued with longing for beauty, meaning, order, creativity, compassion, and love. We approach the world with this roster of longings and expect that in some way the world will respond and confirm our desire. Our longing knows it cannot force the fulfillment of its desire; yet it does instinctively expect that primal benevolence to respond to it. This is the threshold where blessing comes alive.