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.