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Vague Wisdom — LiveJournal
Adventures in Gimp-dom
I know you've all been wondering what the heck is going on with [personal profile] stonebender? Well, I'm going to try better at posting here (you've never read that from me before). I have been in one of my more intense funks. I think I'm getting over it. I am no longer taking Spinraza. I am however taking another drug that is an oral medication, called Risdiplam from Roche. It seems to be maintaining what strength I gained under the other drug and it is obviously easier to take than a drug that needed to be delivered with a lumbar puncture. I had to be part of a study in order to get this new medication which entails some not fun hospital visits, but overall I'm happy with the drug situation.

I have not read anything with any intellectual heft in a while now. It's mostly comfort reading which means apocalyptic fiction/old sci-fi/especially Heinlein juveniles. I did read a fun little book called Gregory's World. Which I enjoyed. Fellow crashes on planet that is some kind of Sargasso planet. He finds himself having to survive along with gobs of shipwrecked aliens from lots and lots of places. All stranded and all trying to have a life. It was fun to read and I even bought the sequel.

I re-watched the first four seasons of Fear the Walking Dead seasons. I like this series much more than I did when I first saw it. I have lost some enthusiasm after season 4. I lost a lot of rooting interest since then, but my opinion of the series has greatly improved.

My sister is going through some bad health stuff not helped by breaking her leg recently. I'm trying to help her without doing everything because I think it's important that people be as independent as possible. After surgery to repair her ankle, she is in a rehab facility to recover. In fact it's the same rehab center that my mother went to before she died. It feels oddly homey to me.

That's probably enough for now. More later.

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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.

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I haven’t been remarking on my continuing Spinraza treatments. Mostly because the trouble I’ve had in staying on the table long enough to let the doctors find an access point hasn’t changed much. I can’t manage to stay on the table longer than a couple hours and if they can get it done in that amount of time, things work just fine. I have had to reschedule an injection about three or four times now. Yesterday was my seventh shot and I didn’t manage to get it done. It is discouraging to do everything I need to do to get to Stanford and then have to reschedule. I know it’s not my fault, but it’s very difficult for me not to feel responsible. I’m sure a lot of this is internalized male baloney, but there you go.

I really wanted this injection to work, because [personal profile] loracs, my partner, is getting a knee replacement (which is also freaking me out!) on Thursday and she does some of my care and it will be difficult to get to Stanford for another try. I hope all of you are having an easier time of it. I know I’m not alone in the frustration of these treatments can cause at times.

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When Worlds CollideWhen 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

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Okay, ‘splain it to me. Career lawyers write about the law. Publish their opinions in various school publications, law reviews etc. Kavanaugh wrote lots of stuff about the Supreme Court and their decisions. So, it’s fine to write about Supreme Court decisions when you’re a lawyer. It’s even okay when you are a judge. However, if you are a Supreme Court nominee, you can refuse to talk about what you have already written because some part of an issue may come before you?

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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.

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As time passes by more and more of the authors I read as a child are dying. Mr. Ellison is one of the last authors I remember reading as a young kid. I encountered him on a couple of occasions. One of the benefits of going to SF conventions. What I remember is that although his reputation would make one think he was difficult to be around. He certainly was capable of verbally eviscerating anyone, but I never saw him be angry or disrespectful of people in general. He saved his fights for those in power. He didn’t “punch down”. Now, I didn’t really know him. I just have a couple of personal memories. He wrote the scariest short story I’ve ever read. I genuinely enjoyed his nonfiction and feel very sad for the authors that would have been included in his third volume of Dangerous Visions. It’s a real shame how that project ended. His version of a Star Trek episode was fascinating, and he should have known it would never make air exactly as he wrote it. He was a huge presence, an occasionally brilliant, but always interesting writer. He will be missed.

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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.

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I haven't said much about my Spinraza treatments recently. Mostly because there isn't much to tell. Last Monday I was supposed to get my sixth spinal injection. We got to the appointment way early, so we had to wait. I don't really want to get into the blow-by-blow's, but I couldn't stay on the table long enough for the doctor to get the needle where it needed to be in my spine. So, I got rescheduled for this coming Monday. This means I need to get blood drawn again. Which means a trip to Emeryville where Stanford has a clinic. Before my failed injection it took them three tries to get blood out of me. I hope this time is different. I just hate needles.

I have been trying not to get too down on myself. I always feel a bit like a wimp when I have to give up laying on the table before they accomplish their task. They seem to always be up for trying again. That leaves me as the one who has to put a stop to the process. I try to hang in, but sometimes it's so long and gets so painful. Giving up also means that I have to go through the whole rigmarole again fairly soon. Which is why I'm headed to Stanford this Monday.

Oh I've been given the opportunity to get some physical therapy. They don't let me have too many appointments, but now I have some exercises to do, it helps me feel like I'm working on things rather than just waiting for things to happen. A few of my exercises I can do on my own, but most I need an assistant to help me complete them. Things like clenching my fists. I can move my fingers a little, but to complete an actual fist I need some assistance. The therapist also has me doing a kind of growing motion to work on my arms. The whole routine only takes about a half-hour. I'm always boggled at how tired I get. I do seem to be getting stronger. It's still not particularly useful, except that my breathing is stronger.

I am not looking forward to going to Stanford this Monday. I really hope it goes well.

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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. [personal profile] loracs has been having more and more trouble with her knee. [personal profile] 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. :-)

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