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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.
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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*
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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.

W00t!

Jul. 26th, 2017 05:07 pm
stonebender: (Default)
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.
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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)
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)
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)
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.
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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.
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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.
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I voted for Nader. I'm a Green and I will vote for Hillary Clinton​.
stonebender: (Default)
I have the same diagnosis as the man who wrote this opinion piece. It gets close to how I feel on the subject.
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I'm back from the hospital!

What? You want details? )
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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)
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.
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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/
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I haven't been feeling too well the last few days. Had a bit of a sore throat and no real energy. Ask [personal profile] loracs how long it took me to get out of the car when we went to Zachary's. Got home happy about the food but really tired. Felt so bad today, I cancelled my therapy appointment. Even though my therapist is very good about letting me do my appointments over the phone. All I can think of was going back to bed. Then I started feeling a little flushed and my teeth started chattering. Turns out I had a temperature. After a while I determined that I had cellulitis again *grrr*. At least I know why I felt like crap lately. I now on antibiotics and ibuprofen for the fever. Hopefully I'll feel improved by tomorrow. I feel so fragile these days (not my favorite self-image.) :-(
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The Toast gives a list of 79 books which, allegedly, all white men own. Bold those you own. Italicize those you have read. Strikeout those you would have to be paid to read. Bonus points if you're not a white male.


1. Shogun, James Clavell
2. Slaughterhouse-Five, Kurt Vonnegut
3. A Confederacy of Dunces, John Kennedy Toole
4. Infinite Jest, David Foster Wallace
5. A collection of John Lennon’s drawings.
6. A Farewell to Arms, Ernest Hemingway
7. The first two volumes of A Song of Ice and Fire, George R.R. Martin
8. God Is Not Great, Christopher Hitchens
9. Catch-22, Joseph Heller
10. I Hope They Serve Beer In Hell, Tucker Max
11. Atlas Shrugged, Ayn Rand
12. The Man Who Mistook His Wife For A Hat, Oliver Sacks
13. The Catcher in the Rye, J.D. Salinger

14. The Godfather, Mario Puzo
15. The Great Gatsby, F. Scott Fitzgerald
16. Lolita, Vladimir Nabokov
17. Fight Club, Chuck Palahniuk
18. The Master and Margarita, Mikhail Bulgakov
19. The Da Vinci Code, Dan Brown
20. The Grapes of Wrath, John Steinbeck
21. The Stand, Stephen King
22. The Girl With the Dragon Tattoo, Stieg Larsson

23. The Naked and the Dead, Norman Mailer
24. Tuesdays With Morrie, Mitch Albom
25. It’s Not About the Bike, Lance Armstrong
26. Who Moved My Cheese?, Spencer Johnson
27. Portnoy’s Complaint, Philip Roth

28. Seabiscuit, Laura Hillenbrand
29. John Adams, David McCullough
30. Ragtime, E.L. Doctorow
31. Lucky Jim, Kingsley Amis
32. America: The Book, Jon Stewart
33. The World Is Flat, Thomas Friedman
34. The Tipping Point, Malcolm Gladwell
35. The Curious Incident of the Dog in the Night-Time, Mark Haddon
36. Exodus, Leon Uris (if Jewish)
37. Trinity, Leon Uris (if Irish-American)
38. The Road, Cormac McCarthy
39. Marley & Me, John Grogan

40. Freakonomics, Steven D. Levitt
41. The Rainmaker, John Grisham
42. Patriot Games, Tom Clancy
43. Dragon, Clive Cussler
44. Guns, Germs, and Steel, Jared Diamond
45. The Agony and the Ecstasy, Irving Stone
46. The 9/11 Commission Report
47. The Spy Who Came In From the Cold, John le Carre
48. Rising Sun, Michael Crichton
49. A Walk in the Woods, Bill Bryson
50. Airport, Arthur Hailey
51. Rich Dad, Poor Dad, Robert Kiyosaki
52. Burr, Gore Vidal
53. Angela’s Ashes, Frank McCourt
54. The Wheel of Time, Robert Jordan
55. Into Thin Air, Jon Krakauer
56. Into the Wild, Jon Krakauer
57. Cryptonomicon, Neal Stephenson
58. Godel, Escher, Bach, Douglas Hofstadter
59. The World According to Garp, John Irving
60. A Brief History of Time, Stephen Hawking
61. The Tin Drum, Gunter Grass
62. On the Road, Jack Kerouac
63. Lord of the Flies, William Golding
64. The Lord of the Rings, J. R. R. Tolkien

65. The Bonfire of the Vanities, Tom Wolfe
66. Beowulf, the Seamus Heaney translation
67. Rabbit, Run, John Updike

68. The Satanic Verses, Salman Rushdie
69. The Complete Sherlock Holmes, Sir Arthur Conan Doyle
70. The Big Sleep, Raymond Chandler
71. One Flew Over the Cuckoo’s Nest, Ken Kesey
72. A Clockwork Orange, Anthony Burgess
73. House of Leaves, Mark Danielewski
74. The Call of the Wild, Jack London
75. Gravity’s Rainbow, Thomas Pynchon
76. I, Claudius, Robert Graves
77. The Civil War: A Narrative, Shelby Foote
78. American Psycho, Bret Easton Ellis
79. Life, Keith Richards
stonebender: (Default)
For those who don't know, [personal profile] loracs is in the hospital with cellulitis. We thought she would be home tomorrow, but her infection is being obstinate. They are trying other antibiotics and she will be getting a CT scan to see if there's some underlining cause for the infection. She is obviously worried as am I. I've had cellulitis on countless occasions, but my infections have always responded well to antibiotics. She is at the new Kaiser Hospital in San Leandro if you would like to visit.
stonebender: (Default)
Sometimes things are too hard. I think that I am strong enough, or maybe hope I am. So far I have managed, but sometimes it feels overwhelming. I will be fine and I really don't have any cause to complain. Many have it much tougher for much longer. I have so many advantages. I see things coming my way that are massive and uncaring and they will come whether I'm ready or not. I'm not ready, nor will I be, no matter what I do. I must just trust that I will cope or accept failure with grace. Grace I have never had. I want to be the shield, I want to be the support, but I'm sure I will be neither. Perhaps the best I can do is not be an additional puzzle to solve.

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