Last Friday I had to go to Stanford for the drug trial. Which made it an early morning for me (6 AM). We got there on time. The visit entails several tests each time, but the tests aren't always the same each time. I was told there would be a blood test. Which is never my favorite, although I'm a lot better about getting my blood drawn now than I was two years ago. I didn't realize there would be several blood tests. They use these to monitor how my body metabolizes the drug. I usually need a baseline draw. Then I take my medication and they take blood again after an hour. Then another an hour later. A fourth a couple hours after that and then another two hours after that. Unfortunately I missed the baseline because the woman facilitating the test forgot I needed one and gave me my meds before the first blood draw. Bad news is they don't get some of the data they would like. The good news is I only had to get stuck four times rather than five. They also gave me an EKG which isn't a big deal, but I missed my scheduled check because of the pandemic.

The Stanford visit went pretty well. I did run into some trouble reentering the hospital. I had gone up to begin my tests with no difficulty that morning. In the middle of my tests, we went outside to enjoy the weather for awhile. On my return the guards said I needed to wear a particular mask that they handed me. Normally, this wouldn't be an issue, but the guards addressed all their comments and questions to Carol even though I was the one not complying. I had a mask on that I had been allowed to use when I first arrived at the hospital, but these guards were more insistent I used the mask they had given me. Look, I know they were doing their jobs and I'm sure some people give them trouble. My issue was they were not addressing their concerns to me. This is a sore spot for me. So after they had explained themselves to Carol. I said if you have a problem with me. Talk to me. He never really acknowledged my request. I called our test facilitator and she talked to them. Eventually I put on the mask they wanted. Which was difficult because I drive my wheelchair with my mouth and the mask quickly moves up my face as I am driving and eventually covers my eyes. So I drove upstairs having to stop every 5 feet or so to have someone pull the mask down so I could see.

I don't know if anyone is watching Fear the Walking Dead, but I really loved this week's episode and it hardly had anything to do with zombies.

I'm terrified of the election, so I signed up for a reading of A Midsummer Nights Dream. I'm reading Theseus and now I'm struggling with performance anxiety. I'm not completely sure what is better. Well, I hope the next time you read this blog I will be happy with my performance and relieved by the results of our election.*Fingers crossed*

And hey, let's be really Zen about this race. I know we may want to know the results as soon as possible, but let's not feed into President Cheeto's "strategy". We know there's always a couple races (and in fact most races) that don't get resolved until days after November 3 and that is completely normal. It's more important to count everyone's vote than how quickly we count.

I received a very unexpected gift yesterday. I was sort of waiting on a CD I had ordered. So when loracs told me I had a package, I assumed that that was it. The box was overkill for a CD, but Amazon can be odd in their ideas of appropriate packaging. On opening it I found *bacon*! (is that a heavenly choir I hear?) Three packages of bacon in different flavors. One is hickory, another is called butter (I’ll have to try that one first). The third flavor I don’t remember, but it has the essential ingredient: Bacon! It took me a while to figure out where it came from, although I had my suspicions. Somehow we misplaced the sender’s name, but we eventually found it. My sweetie, serene sent me the food of the gods.

Years ago serene bought me a bacon-of-the-month-club membership as a present. I think I got more enjoyment out of my then vegetarian girlfriend sending me animal products than I enjoyed the actual meat. The idea tickled me greatly. Anyway thank you so much Buttercup. What a very special gift. I Love you.

I'm down with cellulitis the first time in years. I used to get pretty regularly maybe once a year sometimes two. I forgot how crappy it can make me feel. On antibiotics, if I don't feel better by Monday I'll go to the doctor or the emergency room. You whatever works.

Hi there, long time no write. I'm trying to post more regularly again.

Still reading a whole bunch of zombie crap. I seem to be suffering from choice-paralysis. Can't seem to decide what to read or watch or listen to or do most anything. I listen to music by telling Alexa, play music. Then music I like gets played. I don't know where the info comes from on what I like and what I don't like, but she's remarkably good at picking stuff I like. So there is one choice I don't have to make.

I did binge-watch, Orange is the New Black. I had a difficult time getting through the first three seasons, but after that I really enjoyed it. Some very impressing acting on that show. It feels like the end was wrapped up a little too quickly. I get the feeling they were counting on another season, but didn't get it. There were too many storyline beginnings that just ended with a little resolution but not really.

I'm working on getting my study uncluttered. Our floor back there is deteriorating and we need to make some repairs. I'm also working on getting a wheelchair; a new lift, and I would really like someone to look at our electrical. We still have some pretty old connections that I would like to upgrade. I'm looking towards getting solar panels on the roof and hopefully some kind of power backup. Our electricity is fairly reliable, but does go out for short periods of time two or three times a year. Given how much I rely on electricity, I'd like some backup.

I've got a project working on for The Center for Accessible Technology. I'm going to be maintaining their website for people to review, suggest or publicize adaptive tech for people with disabilities. They used to have a fairly thriving community, but it petered out in the last few years. I'm trying to reorganize it and re-energize the place. I'm not sure I have the technical expertise to do what they seem to think I can do. Most of the meetings I've had with them about it has been the trying to reduce their impression of my abilities. Still, it's something to do. That's about it for now hopefully I will post again soon.

PS loracs and I attended a protest in San Francisco of several different groups: people with disabilities, size acceptance folk, LGBTQ etc. demonstrating solidarity with immigrants to this country. It is evil and how we treat those trying to escape the atrocities being perpetrated in South America. Just to separate children from their families and locking people up for no reason except that they wanted to be safe.

Yesterday I went to Stanford Medical Center for my second attempt at a lumbar puncture for my third maintenance dose of Spinraza. My injections have not been easy. See, I’m a difficult subject. My spine I mean, otherwise I’m a cool guy to be around. I have severe scoliosis and not many access points for the needle. Consequently, I’ve had to lay on the hard, flat fluoroscope table for long periods of time while the doctor tried to find a way into the spinal canal. There have been many repeated attempts. I think I’ve only had a couple of times where they managed to get me on the first try. Second attempts aren’t unusual, but it’s usually because I can’t lay on the table long enough. Yesterday, the doctor gave up. Apparently, the one or two places they’ve been able to access, closed up.

( Read more... )

When Worlds Collide by Philip Wylie

My rating: 3 of 5 stars


I’m cheap and a little depressed, so I’ve been going through old sci-fi from my youth. This is a book I remember really liking as a child. It seemed like the perfect time for me to reread it. It is definitely a book of its time, the 1930's. It includes some very unfortunate terminology towards the Japanese. Given the time it was written, I feel the authors were attempting to be more open-minded about race and gender. They pretty much miss the mark completely. If the reader can completely ignore our current sensibilities, you might enjoy this book. I enjoyed it, but I probably like it in spite of itself. I really liked the idea of humans needing to leave our planet and live on another planet because Earth was going to be destroyed. If you’re as old as me or like really old science fiction, you might enjoy this book.



View all my reviews

In case someone doesn't already know, I am a person with a disability and have little use of my hands. At a recent Abilities Expo, I bought an Obi (a robotic feeding machine) to allow me to independently eat my meals. It's a very slick machine and works very well. It's portable, so you can take it with you or just use it at home. It has a fairly small footprint and a cool look to it.

Unfortunately, I have found myself not using it much and I feel like it's too good a gadget to stay on my shelf. I'd like to sell it to someone who will use it. I spent $6000 for it eight or nine months ago. It hasn't been used very much, so I'm asking for $4000. It is called Obi and you can see it working here:. You can also get its technical specs and the cost of it new there.

I went to Stanford for a second try at my sixth Spinraza injection yesterday. Avoiding dramatic tension, the treatment was successful. In fact, after some discussions with Connie (the nurse practitioner who is overseeing the Spinraza treatments for the hospital), I was prescribed a little stronger pain med. They added some blankets to the table I need to lay on and they were able to get the needle in my spine in record speed. I think it took a half-hour all told from gurney to table and back to gurney for a 20 minute rest. They do the rest after to try and avoid headaches that sometimes occur after a spinal tap. It worked out just fine. Now I have three months until the next one.

I've been in a pretty bad emotional state for a few weeks now. I'm not exactly sure what has caused it. Perhaps my 60th birthday. Perhaps it's worrying about my partners. loracs has been having more and more trouble with her knee. serene has taken on a lot of responsibility for very good reasons, but I know it's stressful. I can't help but feel like I want to help them both and I just can't.

My mother died not that long ago (November). Along with the normal grief I have for losing her. Her death feels a little like I'm cut off from the rest of my family. It's complicated, but I made some decisions in my 20's that isolated me from my blood family. I was staying sort of connected through my parents, but now they both are dead I feel adrift about the rest of the family. I'm not even particularly sure that I want more connection. Being a recovering Catholic I get to feel guilty about that too.

I have upped my Zoloft and that seems to be helping things some. I have FOGcon 8 to go to soon. Which I look forward to and dread at the same time.

Saw The Post yesterday and really enjoyed it. Not at all what I expected it to be. Spielberg managed to include some not-so-subtle comments on gender and racial politics of the time. Some really nice small intimate scenes with women talking to other women about things other than some guy. I know that Meryl Streep is the perennial Oscar nominee. However her performance in this movie certainly merits another win. Not that I want her to get it again, there are plenty deserving actors this time around.

I'm trying to catch all the Oscar-nominated films, but I will fail.

I'm looking forward to the mid season premiere of The Walking Dead. I hope everyone is having a great weekend.

P.S. I've been looking at a few recent posts of my and realize I've gotten a bit repetitive. Sorry about that. I will try to come up with new topics. :-)

In an effort to break through some of this cloud of anxiety/anger/frustration, I was very determined to go to the Women's March today. Got up early (well, for me on Saturday). loracs and I went to the Oakland March. Saw many friends there a few I hadn't seen in forever. We rode BART from San Leandro to Lake Merritt station. This was a first for loracs. She’s never been on BART with her scooter before (or scootie, as likes to refer to it.) Except for some awkward wheelchair-scooter square dancing confusion around elevators, we did well.

A fellow marcher gave out some fuzzy pink hats. Which were warm and comfortable. On the way to the March we were a bit worried about the turnout. We had expected more cars in the parking lot at the San Leandro station. However the turnout in Oakland was pretty big in my estimation. Felt good to be around folks like me. It was a bit too chilly, but loracs made sure I was bundled up properly. I wasn’t exactly warm, but I wasn’t uncomfortable. We tried wandering around after the March, but the crowd was too much for me.

Since neither had eaten much, we headed for Olive Garden and gorged ourselves on pasta, soup, salad. I’m exhausted. It’s been a while since I’ve been out and about for so long. Thank you everyone who showed up and everyone who couldn’t but wanted to be there. Now all we have to do is vote this November. Dump our racist in chief’s cronies, get back the House (and maybe the Senate?) Then we give Trump what he deserves!