stonebender: (Default)
2018-09-29 07:05 pm
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(no subject)

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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2018-09-18 01:32 pm
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(no subject)

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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2018-09-16 04:11 pm
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(no subject)

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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2018-09-08 07:00 pm
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(no subject)

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?
stonebender: (Default)
2018-07-09 04:37 pm
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Adaptive Equipment For Sale

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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2018-06-29 03:55 pm

RIP Harlan Ellison

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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2018-05-22 02:04 pm
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Spinraza, a week later

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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2018-05-17 12:20 pm
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Oh, the joy of Spinraza!

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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2018-02-25 03:32 pm
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(no subject)

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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2018-01-22 09:24 pm
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Remembering the good old days, a meme

I found this on [personal profile] wordweaverlynn's Journal and thought I would answer the questions. The answers are supposed to be in fours. Feel free to follow that or not. [The plan was to finish this days ago, but exhaustion after the March, various computer glitches and nibbling ducks slowed my answers until now.]

Four places I’ve lived:

1. La Puente, California

2. Rockford, Illinois

3. Berkeley, California

4. Oakland, California

Four places I've worked: (This one is harder for me, if you only count work for pay.)

1. Growth Industries (It was a sheltered workshop. Where I got paid one dollar per hour. Sheltered workshops are allowed to pay workers with disabilities much less than minimum wage. I did some piecework, then answered phones and assistant-taught living skills.)

2. Accessible Environments Inc. (Did Americans With Disabilities Act trainings for companies, nonprofits and schools. It was a very traumatic experience. Details available in person if you really want to know.)

3. I got a couple of writing gigs to provide content in online text-based games in the late 90's. It's the only writing I've actually been paid for in my short freelance writing career.

4. I'm going to include the Center for Independent Living here even though it wasn't for pay. I was on the board for 10+ years. Held every office and was president of the board for several years.

Four things I like to watch:
1. Way too much television, especially SF. Some new faves are: Call Saul, Good Behavior, Halt and Catch Fire, and Imposters (although the last one could very well be unduly influenced by the main actress, Inbar Lavi, who checks many boxes in the Guy arousal matrix.) I also want to add a couple of television writers and their shows that are probably difficult to find, but I love. Bryan Fuller was a writer for Star Trek: TNG and also wrote three of my favorite canceled television shows; Dead like Me, Wonder Falls and Pushing Daisies. He was also going to be show runner for the new Star Trek, but had to bow out. I’m also very fond of Amy Sherman-Palladino, who wrote; Gilmore Girls, Bun Heads and is writing *and* directing the new show, The Marvelous Mrs. Maisel writing on Amazon.

2. Being a Dramatic Arts major, I of course love theater. I'd prefer doing theater to watching it, but I’ll take either. I especially enjoy, Samuel Becket, David Mamet, Aaron Sorkin, Eugene O’Neill, Tom Stoppard and I’m sure there are others I’m forgetting. My training largely comes from improv and it will always be a love of mine.

3. Movies, A few faves: Local Hero, Breaking Away, Wings of Desire

4. People

Four places I have been:
1. New Orleans, LA

2. Las Vegas, NV

3. Solvang, CA

4. Houston, TX

Four things I love to eat:
1. Pizza

2. Short bread

3. Bacon

4. Sandwiches

Four people I think will respond:
Whoever wants to.

Four favorite things to drink:
1. Coffee

2. juice

3. Coke

4. Dark beer

Now here is what you're supposed to do (if you like): copy and paste this in your status and update it with your responses. If you do it, just comment "Done" on this post, so I'll know to check yours out.

I'm hoping this will lead me back into posting more. I really miss DW/LJ's longer, more meaningful posts from interesting people.
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2018-01-20 08:28 pm
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(no subject)

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). [personal profile] 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 [personal profile] 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 [personal profile] 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!
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2018-01-12 08:54 pm
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That was different

Unlike every other attempt at a lumbar puncture (LP) for my Spinraza treatment last Friday was about as easy and quick as ever. Arrived at Stanford way early because we didn't get any traffic. Checked in, got called almost immediately. The staff at Stanford has been just great to me. Even during the roughest and longest attempts at a LP, they have always been supportive, kind, and very capable. Got on the table for the florescope and about a half-hour later they were in and taking spinal fluid to give space for the Spinraza. Bingo! That was it.

Went to Max's and had macaroni and cheese with bacon for my reward. We shared some potato soup and latkes. My morning worker tried their chili and seemed to enjoy it. [personal profile] loracs got a corned beef Ruben on rye. Everyone was happy.

Usually the day after an LP I'd be in pain and exhausted. I won't say I wasn't a little tired but it was nothing like it has been recently. Now I wait four months, for the next one. *bouncybouncy*
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2018-01-03 11:33 pm
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(no subject)

A rough beginning of the year for me. Nothing disastrous as usual but not exactly pleasant. Felt a bit ill for some of it and spent a few days recovering. I have my next dose of Spinraza this Friday. This is the first regular dose after the loading doses. It's been 4 months since my last shot and I find that I'm a little more nervous than I was. In preparation, I need to have a blood test and I have needed to get a blood draw for my yearly physical. I managed to get them done today. The only problem was I needed to fast for one of the tests and because of scheduling etc. I didn't really get coffee or food until about 5 o'clock today. However I did get one of my favorite dinners-breakfast for dinner. Had an omelette with some sausage and coffee.

Saw my therapist and reminisced about my mother. Feeling particularly disconnected from family, both blood and chosen. It will be okay. It's really no one's fault but my own. I hope everyone is surviving. I can't really hope for more given the current bonehead and chief.
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2017-12-27 01:52 pm
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(no subject)

Holidays aren't easy for me. I like socializing on some level, but it's not energizing for me. It takes a lot of energy for me to be social. So holidays are a mixed bag. I have one more big social thing to get through and I'll be able to rest for a while.

Inspired by a last-minute idea, [personal profile] loracs and I headed for an actual bookstore (a chain store but still...) last Thursday. When my baby sister's kids were small I would insist on buying them a book. They would get other presents from us, but the book was required. I considered it a small attempt at infusing the love of reading into my niece and nephews. As far as I can tell, I didn't succeed, but I tried.

Anyway, the family had pretty much agreed that we would only be getting presents for the children of the family. Which for [personal profile] loracs and I means my great-niece. She is just four years old. We had already purchased her gifts, but then we decided we would continue my tradition at least for this year and get books for everyone.

We had a lot of fun getting them and I think we were mostly successful in finding literature that was appreciated. Anyway that ate up our Thursday. We went to my baby sister's house for Christmas eve. My grandniece is speaking so much better. She was pretty revved up from presents and holiday candy. So we didn't do a lot of sitting around and talking, but she was really fun to watch. Got home not too late and then went to a movie on Sunday Christmas day. Saw Coco which is a Pixar animation that was really enjoyable. I had originally planned to go with [personal profile] loracs to a friend's house and have some deli food. But I felt pretty wiped out. So [personal profile] loracs dropped me off home and went to see them. No worries I got deli later, but I did feel bad that I missed everyone. However I knew I was not up for a group of people. I hope everyone had a good holiday.
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2017-12-22 08:50 pm
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(no subject)

KindredKindred by Octavia E. Butler

My rating: 5 of 5 stars

Contrary to the synopsis from Goodreads, I wouldn't call Kindred Science Fiction. I'd call it Fantasy certainly or Speculative Fiction if you like. However this is a minor quibble. A contemporary African-American woman (well, from 1976, but contemporary to the story) is called or somehow transferred from 1976 to 1815. Her life appears to be connected to an ancestor slave-owner. Who can, inexplicably, call her to his time and place when he is in danger. To survive she must find a way to act like she's from this time and place. She must act like other enslaved people of color of the time. I won't go into any more detail except to say that this is an amazing story. As long as you are not overwhelmed by the subject matter of slavery and its realistic depiction the story is simple to read, but the author delivers an emotionally complex story that talks about all the ways owning people infects everyone involved. Nothing is simple about the reactions and actions in this story. Definitely worth anyone's time.

View all my reviews
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2017-12-01 11:43 pm
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(no subject)

I am a wannabe optimist. I want to believe that people have some kind of internal ethos that guides their decisions. Republicans have always touted themselves as the fiscally responsible party. Their arguments against governmental programs to help the poor, the disabled, the elderly has always begun with their opinion that we can't afford these programs. In actuality, I've always known that they just don't want to help people. They want to keep their money, their privilege and they have no recognition of the interdependence people in this world, and this country have with each other. They completely refuse to accept the fact that we need each other. That there are people in this country who are dying for no other reason than they aren't rich or even well-off. Republicans would like us to believe that everyone who is in dire financial straits are just lazy and entitled and should get off their ass and work. Nevermind some of us can't work. Nevermind those who can do work, do, but can never get to a comfortable position in life. I know people who have worked every day of their lives and live paycheck to paycheck. Knowing they will work until they die.

Well Republicans, you are getting what you want. Nevermind that it will add $1 trillion to the deficit. Somehow that doesn't matter as long as the money is going to the rich. The poor will pay more. The few middle-class folk who may get a break on their taxes, won't get them for long. But companies in the ultra-rich will get their taxes reduced and somehow Republicans believe that they will voluntarily pay their employees more. There is no requirement for them to do so. Unlike benefits for the poor and middle-class which always has rules about what we can and cannot do with the money. How much we can keep etc. We just hand over the treasury to the rich with the assumption things will get better. Trickle-down economics has always failed, but Republicans still believe it. Now we have the extra special twist of their finally being able to kill Obamacare.

Republicans you completely and utterly own this. You shoved the bill down our throats with zero ability for anyone to understand what was being passed. The actual bill was never completed until this evening and even then there were hastily written additions, amendments that no one has had any real time to digest or even read. You can never ever talk about how terrible deficit spending is. You don't get to present yourselves as fiscally conservative. You no longer get to complain about how we need to go through a full legislative process before we pass legislation. There was not a single hearing. It didn't go through any committees. We are going to live with your blatant disregard for anyone else's concern but your donors. I'm ashamed of you. You are destroying this country for no other reason than to get a "win".

And now Republicans will use this massive deficit from continuing wars that no one wants. The trillion dollar addition to the deficit and you will want to go after Social Security, Medicare, Medicaid and any other program that doesn't benefit the very rich. Be proud of yourselves I plan to remember what you did to this country. I hope everyone else remembers. Make no mistake Republicans, people will die from what you did today. This is not a different philosophical opinion about the role of government. This comes from hatred. You hate people like us who need some help.
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2017-10-14 02:18 pm
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(no subject)

About 9:20 AM this morning, my mother came to the end of her life. It was not unexpected and I think she went as peacefully as possible. I signed the paperwork to have my mother given hospice care on Wednesday. Friday, my sister Cheryl called saying that the doctor didn’t think Mom had much longer. [personal profile] loracs and I went to see her and stayed most of the afternoon. She recognized me when I arrived and immediately asked where [personal profile] loracs was. (She happened to be right in front of Mom but it hadn’t registered for some reason.) As the afternoon wore on she slept more and more. By the time we left late afternoon, she wasn’t interacting with any of us much. The hospital room wasn’t large and there was plenty of family around. My two sisters, my baby sister’s husband, my brother, [personal profile] loracs, my niece and both nephews and even my great-niece. I had felt largely in the way most of the afternoon. I could’ve stayed longer, but I felt like I’d said my goodbyes to her Wednesday and staying didn’t seem helpful to anyone.

I don’t know if my mother was ever really proud of me, but she did love me very much. She loved [personal profile] loracs and I even think she was fond of [personal profile] serene (even though I don’t think she liked the whole arrangement. :-) She was given the impossible task of raising a severely disabled, stubborn child along with three other children and managed as well as she could. She was a keypunch operator, a bus driver, factory worker, and hotel housekeeper. She did what she needed to keep us safe and healthy. She lived through long lectures from her son on his homework or latest interest. I’m sure that many of those conversations she could barely follow or care about. Yet she always seemed genuinely interested in my silly schoolboy theories and passions. I know I put her through several kinds of hell. Hopefully, she's somewhere arguing with her mother and petting lots of dachshunds and Boston Terriers. Drinking hot cocoa, bowling, working on jigsaw puzzles and watching television. I will miss her so much. I love you Mom.
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2017-09-21 04:45 pm
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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.
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2017-08-30 02:04 pm
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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
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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.

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