stonebender: (Default)
2017-09-21 04:45 pm
Entry tags:

Final loading dose... DONE!

I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication.

On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!

Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.

I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. [personal profile] loracs and I will be the only ones to notice.

I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, [personal profile] loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.

After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.

On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)

On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.
stonebender: (Default)
2017-08-30 02:04 pm
Entry tags:

We do’ed it!

Second try on the third dose, done!

After last Wednesday’s fail, I talked to Connie about options that had been mentioned. She really didn’t like the idea of the CT assist because of the additional radiation. Since the plan is to continue getting Spinraza regularly; needing a CT assist each time would quickly get me glowing in the dark. :-)

After a couple LP’s, I’d come to realize that some pain medication would help me. When I discussed this with Connie prior to my third dose, she thought, I was trying to treat the pain after the procedure. I am sore for a couple of days afterward. Actually, I’m much more concerned about the pain of being on the fluoroscope table. I thought that pain meds might allow me to stay on the table longer and with more comfort. Thus, giving the doctor as much time as possible to get the furshlinginer needle in my spinal canal.

I don’t do pain medication much at all and with my weak lungs, Connie worried about how pain meds would impact my breathing. She suggested Tylenol. I really didn’t think that was going to touch the pain. So, she offered a small dose of Vicodin. She wrote me the prescription and I picked it up Monday evening. She had suggested I try a dose Monday evening and if it felt okay, to use a dose before the lumbar puncture Tuesday. I ended up taking Vicodin in the waiting room before the LP.

Perhaps it’s a bad sign to go to the hospital often enough to start knowing everyone’s name. One of the nurses who had introduced herself at my last LP attempt asked if I remembered her name. I had forgotten the name, but I tried to play it off by saying that she didn’t look like a Hailey. She asked what name she looked like and I said Sarah. So she asked me whether I remembered her name to see if I would call her Sarah or not. Previously Carol had suggested thinking of Haley’s Comet would help me remember which of course it did. So now Haley is permanently in my memory.

As we walked back to the “staging” area. Basically where I transfer from my wheelchair to a gurney before going into the fluoroscope room. She commented on the blanket I had over my arms. I use it to you stay warm because it’s easy to take on and off. For some reason I hadn’t used it for my first attempt at the third dose. Haley suggested it was my “lucky” blanket and that this time we would be successful since I had remembered to bring it. Perhaps she has a point, because it did work this time.

At first, it seemed I was doomed. I heard too many familiar comments of failed attempts: “We’re almost there…No, that’s bone…Let’s go back to 70, maybe that’s a better approach…That hurt? Sorry sir, did it feel like your back or did it go down your leg?...Bone again”
After almost 2 hours they decided to try a completely new angle and I had just about decided I couldn’t take it anymore when I heard my doctor say, my new favorite words: “I’m in.”

I quickly responded with a “You have to be shitting me!”
“No believe me.”
“Hey, I’m sorry for the language.”
“Oh no need, you just said what we were all thinking.”

After thanking everyone profusely I headed back to get transferred to my wheelchair. Haley brought me some cookies she had made. They were a chocolate chip cookie/s’more mash up that tasted quite good. She told me there were three there. One for me. One for Stacy and one for Carol. She told me I wasn’t allowed to eat all three :-(. Anyway there were lovely cookies and it was very sweet of her.

As I’ve said before and I will continue say, everyone there at Stanford has been so very supportive. I feel like a real champion leaving the building with all the fuss they make.

So now it looks like one more in a month and I will have all of my loading doses. After that I’m not sure what happens with continuing treatment. They don’t know about reimbursements because Medicare is being less than cooperative about committing. Everyone at Stanford seems positive that things will work out. I tend not to be that kind of guy. So I will be cautious until I actually get a real OK.

Now as far as whether the Spinraza is doing me much good. There is very little objective evidence. I will be getting my lungs tested by the pulmonologist after the loading doses. If there is as much improvement as it feels like I have made. It will be documented with the test. [personal profile] loracs tells me she thinks my grip is a little stronger. I do feel like my arms are a bit stronger, but it’s hard to prove. I think I’m making more small gestures with my hands as I talk. Many more gestures than I remember doing in a while. This could all be wishful thinking on my part. I’m looking forward to some third party corroboration.

I’m sorry this took so long to post. I just couldn’t make it work and I’m still not sure I like it, but here is. Now onto September 5 for the fourth and final loading dose. Hoo boy!
stonebender: (Default)
2017-08-29 07:31 pm
Entry tags:

(no subject)

10:3710:37 by Jacqueline Druga

My rating: 2 of 5 stars


I'm guessing this book was self-produced. I'm getting a little tired of this, mainly because things like spelling and punctuation get missed. Some copyediting by a skilled editor would be nice. I didn't buy the explanation of why the world lost so many people. I didn't like the sorta kinda zombie stand-in in the story. I thought the loss of a character was not given enough background to make it important. So the death seems arbitrary. It was a quick read however and I like the subject matter well enough to finish the book. I just wished it was better.



View all my reviews
stonebender: (Default)
2017-08-25 10:56 pm
Entry tags:

My third dose of Spinraza

I have been trying to write about my second attempt at the third dose of Spinraza and haven't been satisfied with the results yet. I realize there may be some of you that are worried (or maybe I elevate the concern people might have). So, I should let you know that the third dose was successfully done. I have one more to do and the loading doses are done. I will eventually post in more detail. When I can.
stonebender: (Default)
2017-08-14 02:45 pm
Entry tags:

Once more into the breach, dear friends.

Looks like tomorrow I go back to Stanford to try again for the lumbar puncture. After last week's attempt there was talk about using the CT to do my lumbar puncture, but that takes a lot of radiation. Using the CT on a regular basis doesn't sound like a good solution. Connie recommended that we try again with a doctor who successfully did my puncture before (actually my first lumbar puncture). So I will be in Stanford tomorrow at 11:30 AM for a second attempt on my third dose. Then I have a month before I have to take the final loading dose.

We did ask Connie about how the delay in getting my third dose will affect the effectiveness of the treatment and they just don't have data for that. She and Dr Day are optimistic that this won't be a problem. We also talk to her about getting pain meds to help with the pain of laying on the table for so long. She's concerned with how the pain meds will affect my breathing. On her suggestion, I'm trying Vicodin tonight to see how I feel. If it goes well I'll take another Vicodin before the procedure. If it doesn't, I'll do what I have been doing and gut it out.
stonebender: (Default)
2017-08-10 05:33 pm
Entry tags:

Spinraza dose three, part two.

We got up on time, but took longer than we should have getting out of the house. We got to Stanford a little later than we planned. Scheduling my doses is odd at Stanford. They have some computer difficulties that doesn’t allow the scheduling computer to reflect reality. So we do this weird phone/email dance where my appointment reminders are all over the place.

My appointment was rescheduled to yesterday at 10 AM. The staff want me to be at radiology an hour ahead of time. So for me, that means 9 AM. When the automated reminder system kicks in, I get 10 to 15 reminders. None of which are 9 AM. I get 8:30 AM 9:30 AM and 10 AM, but no consistency. Consequently, I just go by what Connie tells me and I’m usually fine. It is amusing though to get all these reminders that don’t really help much.

We got there at 9. Without much of a wait, they got me into radiology, transferred me to a gurney and I started waiting for the doctor. There was the usual confirming what medications I’m on, and making sure I hadn’t eaten before the puncture. The doctor showed up about 15 minutes after and we did the legal dance of her telling me the possible effects of the puncture. It always makes me smile when they inform me that I might bleed. Really? You’re sticking a sharp object into my body and I might bleed. I’m boggled, are you sure?

The staff, with [personal profile] loracs’s help got me transferred to the gurney and then to the florescope. I insisted that they leave me on the gurney until the doctor was ready and the staff made sure everything was set to do the procedure before the got me on the florescope table. The hard, cold, florescope table. It didn’t take too long to get me positioned properly except for dealing with my arms. They need them up above my head which is a position that my body is decidedly not designed for, but using tape, they can get me where I need to be.

I had been assured that the doctors had looked at my CT pictures from my previous doses and were ready to deal with my unique anatomy. They are always very aware of avoiding the pain of the needle going into my body, but that’s never really the problem for me. The needle and all the probing to find the magic spot isn’t ever really painful. Uncomfortable, on occasion, and I do occasionally get a jolt that isn’t exactly pain but isn’t fun. None of this is a problem for me. The issue for me has always been the position I have to be in for the procedure. The hardness of the table I have to lie on and how very long I have to be on the table. Both of my previous doses succeeded after I was long past my ability to cope with the pain. Both times I was on the verge of quitting when they finally got in. This time was no different except that I endured the 2+ hours on the table and they didn’t manage to get the Spinraza into me yesterday. This is the third time that the procedure didn’t accomplish what we all intended.

I feel like I need to say again and again how wonderful the staff has been at Stanford. The doctors and nurses and orderlies have just been fantastic. They all understand this is difficult for me. I understand that the one reliable entry point into my spine is a very small and complicated target. The doctor doesn’t just need to get the needle to the hole, with all of the calcification because of a long life in a wheelchair, the angle and approach has to be just right. I can’t tell you how many times I heard them say, "we’re almost there just another second..." And they still couldn’t manage to get to the spot. Everyone did what they could do to make this whole thing successful. I’m just a really hard “stick”.

I felt like a failure as I often do. I know this is not a rational response. It’s not like I could do anything to make it easier for them to succeed except to do the best I can and stay in a painful position as long as I can. However, it is always me that says I can’t do this anymore. I feel like I’m calling it off and if I could just hang on a little longer it would be successful. Everyone at Stanford says I do as much as could be expected and I try to hang onto that. This does not prevent the reality that I’ve got to go back to try and do this *again*.

I will say that some of the stress has been eased after talking to Dr Day. He has been involved in Stanford’s Spinraza injections, but we had never met until today. Connie was usually the one giving me the Spinraza, but she was on vacation. Imagine that, going on vacation when I need her. The nerve of the woman. :-) Anyway, I had always worried about maintaining the schedule of injections. I had been told they had to be two weeks apart to the day with a day or two latitude. Dr Day says that the operating procedure is every two weeks for the first three shots and then a month for the final loading dose. However that doesn’t mean there’s a problem if a dose is delayed a little. After not succeeding this time, all the doctors working on me yesterday have suggested I get Spinraza with the assistance of CT. Now I’m waiting to reschedule the third dose as soon as they can get me an appointment.

My family has a family belief. That goes something like this. Thomas’s always get what they need, but they very often have to go the long way around to get it. I feel like I’m holding my end of our belief system. I do think I will get all the loading doses eventually. I’m also not surprised that my journey is the longer way around.

I’m recovering now. It will probably be another day before I start feeling normal. I’ll let you know when I’m scheduled for my third dose. Meanwhile, I hope everyone is having a better time or at least as good a time as is possible for you. *Sigh*
stonebender: (Default)
2017-08-08 03:32 pm
Entry tags:

Spinraza third dose

Following the original schedule I should have I should have received my third loading dose of Spinraza yesterday.

I received a phone call on Friday from Connie, who has given me the last two doses of Spinraza, asking if I could reschedule my Monday appointment to Wednesday. She had just observed the doctor who was to give me my lumbar puncture doing a lumbar puncture on another patient. The doctor was new to lumbar puncture's and apparently the one she observed didn't go so well. Adding his inexperience to my complicated anatomy didn't seem like a good idea to her. I was very touched that she went out of her way to watch out for me. After all she could've legitimately just let the thing happen as it happened. However she took it upon herself to give me the chance at an easier and perhaps a better experience. So I agreed to changing my schedule. Unfortunately the worker that normally comes with me can't make the Wednesday appointment. This shouldn't be a huge problem because the staff at Stanford have been very helpful with transfers etc. I think, [personal profile] loracs and I can manage things.

I'm trying real hard not to get too discouraged about all this. After the first shot I thought I felt a difference in my breathing. I'm not at all sure I do anymore. There hasn't been a lot or in fact any improvement that I've noticed so far. Now they said at the beginning that I might not feel any difference until after all the loading doses have been, well loaded. So, I'm trying to keep hoping, but not hoping too much. It all seems to be about managing my expectations for now. Given the trouble I've had getting to treatments, I'm really hoping I didn't do this for nothing. So early tomorrow it's off for another lumbar puncture and another dose of Spinraza. Then I wait a month for my fourth and final loading dose. Then I believe I've got to go through another approval process for the maintenance shots that will happen every four months from now on if I get the okay from Medicare.

Keep me in your thoughts tomorrow morning and I will let you know how it goes. Thanks everybody.
stonebender: (Default)
2017-07-26 05:07 pm
Entry tags:

W00t!

Guess what? They did it! This time my second dose of Spinraza is swirling around in my spinal column. It was still pretty difficult this time although they did make some adjustments. I got a CT scan in addition to fluoroscope. I guess the CT gave them a little more information. Apparently I have a lot of bone in the way of some natural access points. The one place they’ve managed to be successful is a fairly small hole and they’ve got to approach it at just the right angle. They worked on me for about an hour. Having gone through this the day before, Tuesday’s hour was about my limit.

Another adjustment they made, was not putting me on the table until the doctors were ready to proceed. I still had to wait while they checked my spine out with the fluoroscope, but at least all the time I was on the table they were working towards the injection. I’m going to have a long conversation with the doctors in the near future. There must be some way they can make this process easier. I’m not so worried about getting my “loading” doses but I am concerned about the continuing process of getting these shots. I have a third dose in two weeks and then a fourth dose a month after that. Then I need to get a dose every four months for the rest of my life. I guess I will deal if I have to but it’s a discouraging prospect.

I’m going to try to respond to everyone individually, but if I don’t get to you, please know that all of your support with the support of my family makes it possible for me to go through this. I think I’ve noticed some improvements in my physical status, but I hesitate to talk about it much this early in the process. I will keep people informed.
stonebender: (Default)
2017-07-24 10:27 pm
Entry tags:

Spinraza, dose #2 or why do I keep thinking of a Latina DJ?

Today was supposed to be the day for my second dose of Spinraza. I showed up half an hour early to my appointment at the Stanford Neurological Clinic. Checked in and was sent to radiology. They told me that the second time should be easier. They had done the procedure successfully once. Documented where they had been successful and things were supposed to go more smoothly this time. Well I'm home and it's 9 o'clock-ish and I did not get the Spinraza today. The nurse, Connie tells me we can try again tomorrow, but if we are unsuccessful, I don't think I will be getting anymore medication.

Like last time, I was transferred from my wheelchair to a gurney. I had to wait a couple of hours because there was another person getting Spinraza ahead of me. I guess they're getting a lot more interest from people with SMA.

Around 11 o'clock they wheeled me into the room and transferred me to the cold hard table they use. They positioning me on my left side again and then I waited 10 or 15 minutes for the doctor to show up. Normally this isn’t a big issue I’m used to being patient and waiting for doctors, but laying on a flat surface is painful for me. My diagnosis causes contractures in my joints especially my hips and knees. So I don’t really do flat surfaces very well and making the surface hard doesn’t improve the situation.

Eventually the doctor showed and they finished positioning me and started taking pictures to decide the best site for the lumbar puncture. After 30 minutes or so they numbed me up and started poking. Now I want to be clear the staff at Stanford are really great to me. They were very thorough and professional this time. I just apparently have a uniquely fucked up spinal column. Even though they saw what looked like a very promising site for the puncture they kept hitting bone. Around an hour and 30 minutes I was starting to get in real pain. I had been in pain since they put me on the hard table and I was able to manage it but at this point I was starting to feel like couldn’t really take much more. I was even neglecting to report some pain from the puncture because it just didn’t really hurt as much as the rest of my body.

My shoulders ached, my hips hurt and the ribs on my left side were killing me. The doctors kept asking me to hang in there and Connie asked to give them five more minutes. They pulled out the needle, changed doctors and took another try at a whole new area of my spine. (After having made two attempts higher up on my back.) After another 30 minutes the doctor said she was very. very close and to hang in there. I tried for another 10 or 15 minutes and reluctantly pled uncle.

I was in agony. I was sweating. I was exhausted. Frustrated with myself and the universe for screwing around again. They rolled me on my back and eventually got me into my wheelchair. My worker, who came with me, had an appointment for her doctor at 2:30 in the afternoon. We hadn’t thought we would be at Stanford this long, but once I was done we rushed to the car and tried to get to Highland as soon as possible. We did manage to get her to the hospital about five minutes late and she texted us later to tell us the doctor saw her. So at least I didn’t screw her day up.

Connie said she would try to work something out. You see this drug has to be administered on a strict schedule once I had my first dose two weeks ago I have to have the next two doses in intervals of two weeks. However it turns out that I have one day leeway. I must get my next dose tomorrow or I think I need to start over again. I’m not at all sure I would get the approvals. I am the first person with Medi-Cal and Medicare who has been approved for the treatment. I was supposed to be the test subject. Connie said she'd call me later and she did. I have an appointment to try again tomorrow.

The problem is tomorrow I was supposed to have my caseworker do their annual review for my IHSS (which funds my personal care workers). I have never had to reschedule before but I had to reschedule in order to go to my original appointment. We rescheduled for the following day which of course now I can’t make. So I need to cancel again and hope they won’t be too upset.

I feel like I failed. I know intellectually I didn’t, but I think of myself as being pretty stubborn and I’m proud of that. Now, I gave up and I can’t help thinking I should’ve tried to hang in there a little longer. I really hope these treatments get easier or I don’t know how much of it I can take. Wish me luck tomorrow. And hope my caseworker doesn’t decide to screw me over.
stonebender: (Default)
2017-06-16 09:27 pm
Entry tags:

My First Shot (Almost)

Today I was scheduled to get my first Spinraza treatment. I've been told
that I am the first Medicare recipient to get treated. Because of a weird
Medicare regulation, I couldn't get treated in the new building at Stanford.
Something about a requirement that wouldn't allow me to be treated more than
200 or 300 yards from the hospital. So Connie needed to schedule a room in
the old building, which wasn't familiar or really set up properly for the
lumbar puncture. I was put on a small examination table that was fairly
uncomfortable. Connie really wanted to do the puncture with me sitting up,
but I haven't been able to set up on my own since I was about 20. They had
people to help but it was ultimately decided to do the procedure with me
laying on my side. Read more... )
stonebender: (Default)
2017-06-15 02:47 pm

Spinraza Friday!

Hi All,
I will be posting this to lots of places, so friends and family may very well get multiple copies of this. I’m also explaining things that my family and close friends probably know already. Sorry about that, but I’m feeling like I want my friends, family and even some acquaintances to know some things about what’s going on with me in the near future. Read more... )
stonebender: (Default)
2017-01-08 04:53 pm
Entry tags:

(no subject)

At this point it's difficult to tell whether I'm getting better or worse. I think on the whole things are improving, but never long enough to be sure. Tapering off of prednisone, I called the on-call doctor yesterday to talk some things through. I'll start using my nebulizer more frequently. Somehow I had the impression it was a bad idea to use the albuterol (for the nebulizer) with prednisone. She assures me I'm mistaken. So I'm using it about every four hours on a schedule. My breathing isn't as deep as I'd like, but it's a fairly easy breath. My breathing is a bit noisier than I would prefer. :-) People should feel free to ignore these emails. I think better out loud and since I use voice recognition some of this writing is me thinking out loud.

I should let folks know that I was off-line most of yesterday because of a technical glitch that has been resolved. Being sick with no Internet is not my idea of a good time! I hope everyone else is having a much better New Year. Thanks to all who are thinking about me. I know that I am not the best blogger/correspondent. I tend to "go silent" when I'm not feeling well. These posts are also an attempt at correcting that tendency.
stonebender: (Default)
2017-01-06 07:50 pm

(no subject)

With a lot of three steps forward, two steps back, I seem to be improving. Doctor put me on prednisone for my wheezing and it seems to help. Talked to the doctor about my use of Xanax for panic attacks and she seemed to think I was using them well and as intended. I went without Xanax at all yesterday, but found myself using one about an hour ago. It's hard to tell if the breathing is getting better today or not. I am able to breathe pretty well, but still wheezing more than I'd like. Actually went out for dinner yesterday. So, I'm still kicking. I hope everyone else is doing well.
stonebender: (Default)
2016-12-26 11:30 pm
Entry tags:

(no subject)

I often write in this thing when I feel depressed or anxious. Please feel free to skip this post if you have had your fill of self-indulgent whining. I've been in relatively good health this year, but just got a cold a few days ago. So far it's been pretty mild and I hope I'm on the getting better side of it all. The cold isn't that bad, but it really brings back my panic attacks. I cough up anything and my head is telling me I'm going to choke. I'm going to die. Now I'm pretty sure that I'm overreacting, but it still feels real. I do have Xanax, which helps me get to sleep. I guess I just want to tell someone that I am worried. Don't anyone feel they need to do anything about this. Often just saying things out loud or writing them in public helps to get them in perspective. I hate being so afraid.
stonebender: (Default)
2016-10-07 11:07 am
Entry tags:

(no subject)

I voted for Nader. I'm a Green and I will vote for Hillary Clinton​.
stonebender: (Default)
2016-10-05 10:38 pm
Entry tags:

(no subject)

I have the same diagnosis as the man who wrote this opinion piece. It gets close to how I feel on the subject.
stonebender: (Default)
2016-08-08 10:33 pm
Entry tags:

(no subject)

I'm back from the hospital!

What? You want details? )
stonebender: (Default)
2016-07-12 12:39 am
Entry tags:

(no subject)

From [personal profile] serene via [profile] sundaystealing.

When was the last time you wrote a letter to someone on paper?

If were talking personal letters to people we know I would probably have to go back to summer camp when I was 10 or 11. I have written to my representatives on various issues. I'm not sure when I wrote the last one (maybe six months ago?)

Can you change the oil on a car?
Physically able to? No. Know how to? Well, no I don't know how to either.

Ever gotten a speeding ticket?
Never driven, so no speeding tickets.

Run out of gas?
[personal profile] loracs, and I broke a fuel line in LA once. So I guess you could say that was running out of gas.

Favorite kind of sandwich?
I am my mother's son and I love sandwiches. All kinds. If I like the ingredients at all putting them between two slices of bread is a plus. I have a special fondness for a sandwich [personal profile] loracs designed for me at Genova's Deli (that doesn't exist anymore at least as a sandwich place.) It was their Italian meat with fresh mozzarella on sliced sourdough with oil and vinegar. I love grilled cheese, hamburgers, liverwurst and PB&J cooked or uncooked. I loves me some sandwiches!

What is your usual bedtime?
2 or 3 AM.

Are you lazy?
More often than not.

When you were a kid, what did you dress up as for Halloween?
I hate to write it but the costume I wore the most was "hobo". Mostly, because it was easy to put together.

Do you have any magazine subscriptions?
I don't think so, wait I just started paying for an alumni membership to UC Berkeley. I think it comes with a magazine.

Which are better, legos or lincoln logs?
I reject the concept of better in this question. I like Legos a little more because they are more versatile to me, but both are fine time-killers. Not that I can use them anymore.

Are you stubborn?
I happen to think stubbornness gets a bad rap. I believe that I can be stubborn, but don't have to be. I also think that my stubbornness has kept me alive on more than one occasion.

Who is better, Leno or Letterman?
I hate the way Letterman handles some topics; being fat for example. I've always thought that Letterman was careful who he made the butt of his comedy. He attacked professionals, people in the public eye in general.

I never found Leno particularly funny. He's also very unimaginative. What I truly detest is how Leno picked on ordinary people who could not defend themselves. All of his "man on the street" interviews made fun of people who didn't deserve it. I always felt that Letterman did his best to take care of the people on his show.

Ever watch soap operas?
Sure, I watched Dark Shadows when I was a kid. I also watched my mother's soap operas: General Hospital and One Life to Live. I sometimes watch [personal profile] loracs's soaps with her but not very often.

Afraid of heights?
I'm afraid of hurting myself. Heights tend to make me think of falling, but I can usually deal with heights if I need to.

Sing in the car?
Sure, but then I sing everywhere. I'm not particularly good and I don't always know all the words, but I sing it's a family thing.

Dance in the shower?
No, showers are for getting clean and having sex.

Dance in the car?
About as much as I dance anywhere.

Ever used a gun?
Nope, unless you count a BB gun.

Do you think musicals are cheesy?
What's wrong with cheesy? Sure some are, but I tend to like them much more that I dislike them. I'm enjoying the soundtrack to Hamilton. Love Les Miserables, Rocky Horror, Little Shop of Horrors (*not* the movie). I love Sondheim. Hate Andrew Lloyd Webber (except for Jesus Christ Superstar)

Is Christmas stressful?
Nah.

Ever eat a pierogi?
Sure, they are like little sandwiches.

Major annoyance right now?
Well, besides the world at large. Right now I’m terribly bothered by a DVD digitizing service called Vudu. For a fee they allow you to take DVDs that you already own and store them online. Because of licenses a great deal of my DVDs are not eligible for transfer. I’m annoyed that those same DVD’s can be purchased and added to my online library for a significantly higher price than the transfer fee. “Grrrrr”

Occupations you wanted to be when you were a kid?
Astronaut, Pilot, Actor, Rock guitarist.

Do you believe in ghosts?
No.
stonebender: (Default)
2016-05-14 08:46 pm
Entry tags:

(no subject)

I'm listening to The Weepies (a fairly new favorite band for me) playing in a coffee shop in Iowa city over the Internet broadcast by Iowa Public Radio News. I'm reading a New York Times article about a child with cancer and his family. (Trigger warning: it is fairly descriptive of a child going through a very rough time.) The ending is a happy one, but what strikes me from the article is how little we know about anything in this world. I find this comforting, because it means there is so much more to learn and understand in this crazy world.

This is a great day for me.
stonebender: (Default)
2016-02-01 01:09 pm
Entry tags:

signal-boosting

My sweetie, Serene's Dad's TeachElectronics.com site is offering a giveaway of a free Arduino (or Genuino if you're outside the US), partly for fun, and partly to test their new commenting system. If you want to enter, please head over there, and signal-boosting would be greatly appreciated.

http://teachelectronics.com/arduino-resources-and-a-giveaway/