Wednesday, May 29, 2013

What Do I Do All Day? I Read Other People’s Blogs

Blog (detall)
Blog (detall) (Photo credit: Lady Madonna)
I read a lot of them. Some are professional and followed by thousands of people, such as or Some are personal, with only a few dedicated readers. But I treat them all the same, and here’s what I mean.

Readers shouldn’t burden themselves with remembering to look for new posts from their favorite bloggers. Updated blog posts should come to the reader. If I like a blogger for any number of reasons, I make sure that I am given the opportunity to read all of their posts. Based on the title of an individual post, or on my impression of the first few sentences, I may or may not actually read the entire post, but I always want to have that option handed to me on a silver platter.

This means that, in one way or another, I subscribe to my favorite blogs. At least two methods are available to make sure that I never miss a post.

Email Notification

Many blogs have an option where the reader can be notified of new posts through email. For example, if you want to receive an email version of each of my blog posts, then simply enter your email address near the top right-hand corner of my blog, in the box entitled “Receive Email Updates of New Posts”. Many, but not all blogs have a similar option.

If you only follow a few blogs, then this method may work fine for you. However, I subscribe to a large number of blogs, and I don’t want my inbox cluttered in this way. So I go with another option.

RSS Feeds

For most sites I subscribe via a blog reader. By far, the most popular one has been Google Reader, which I have used for years. Unfortunately, Google Reader is going away on July 1. But there are several free, replacement options. I’ve chosen to start using a program called This service interfaces with my existing Google Reader account, and when Google Reader is gone forever, Feedly will seamlessly take over, or so I am told.

If you have more than a few blogs that you subscribe to, I highly recommend that you take the five minutes required to set up a service like Feedly. Of course there are more blog reader options than just this one. In the comments section of this post, please let me know what service you like to use.

Why Waste Invest Time Reading Blogs

Prior to Al Gore inventing the internet, we had very limited sources of information, and said information was largely pre-filtered for us, whether we liked it or not. It was difficult to find specific, enlightening, entertaining reading on the most interesting subjects. This is no longer the case.

Each of the blogs that I have chosen to follow speaks to me in some way. They may address topics that I am passionate about, or perhaps I simply connect with the author. In a few cases, the bloggers are personal friends. In most cases, however, I’ve never met them.

Another great feature of blogs is their interconnectivity. I try to have a few hyperlinks in each of my blog posts, and so do the authors of the blogs that I follow. In this way, readers can drill much deeper or broader into the topic if they so desire.

Currently, I subscribe to about 50 blogs. Some of them post multiple times per day. Others post only a few times a year. If a blog repeatedly publishes articles that don’t interest me, I remove it from my list. Many of my favorite blogs, however, pique my interest as little as 25% of the time. But I still keep my subscription because those articles appeal to me, and I don’t waste much time on the other 75%. I simply read the first sentence or two before I determine that I’m not interested.

I know that 50 blogs is a bit extreme, but I have a thirst for knowledge and a lot of free time on my hands. I encourage you to find at least a few blogs that you wish to follow, and set up a system where the posts come to you, so that you can sift through them at your leisure. After all, you need something to stare at on your cell phone while everyone else around the dinner table is staring at theirs.

This is the seventh in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.    

Here are my other posts in this series:
1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog

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Wednesday, May 22, 2013

Disability Retirement- A Broken System

Seal of the United States Social Security Admi...
(Photo credit: Wikipedia)
I don’t even know if disability retirement is the correct term, but that’s how I usually describe the fact that I no longer work. Actually, today is the four-year anniversary of my last day at the office. I believe this milestone gives me the right and perhaps the obligation to stand on my soapbox and editorialize for a moment.

The creeping paralysis that I’ve endured over the past 12 years has taken its toll. But no loss was more acute than being considered fully employed one day and completely and permanently disabled the next. Of course, that is not how chronic diseases really behave, but it is how disability policy does. My transition out of the workplace should have been a slow, gentle process. Maybe I’ll write about that in more detail later, but it’s not the primary objective of this blog post.

Other than its somewhat arbitrary date, my transition into disability retirement couldn’t have gone better. I had several things in my favor. First, I worked for a company which offered long-term disability insurance as part of their benefits package. Therefore, I now receive more income than people who rely solely on Social Security disability checks.

Second, Kim has a secure job with a good salary. This means that we still have enough combined income to maintain a comfortable lifestyle and enjoy a certain amount of financial security.

Third, Kim’s medical insurance policy covered me for the 2½ year waiting period between the time I stopped working and the time I qualified for Medicare. That’s right – when you become so sick that you can no longer work, and you subsequently lose your medical insurance which was provided by your employer, Medicare waits 2½ years before stepping in. That makes a lot of sense.

images Fourth, the medical benefits I receive through Kim’s insurance will continue to supplement my Medicare policy until she retires. As anyone over 65 years old knows, Medicare falls short of complete coverage in many respects, not the least of which is prescription drug coverage.

I am, however, the exception to the rule. Most people who take disability retirement because of multiple sclerosis or similar chronic conditions are not as fortunate. Many such individuals find themselves without affordable medical coverage for the first 2½ years and without adequate income for the rest of their lives. And these hardships occur when things have never been worse, medically or financially. Their cost of living has skyrocketed because this is such an expensive disease to live with. It’s not only the costs of doctors, hospitals, and medicines. There are also the expenses associated with mobility devices such as canes, scooters, wheelchairs, and vans, not to mention home health care workers, roll-in showers, ramps, and grab bars, if not an entirely new house.

For a well written, first-hand account of what I describe above, please read my friend Muff’s blog post here.

No other developed nation treats their most disadvantaged citizens so callously. It’s no way for people to live in the 21st century, in the world’s richest country. We are better than this.

I believe that most people aren’t even aware of how weak our social safety net is for people with chronic diseases. I certainly wasn’t until I became well-versed in these issues out of necessity about four years ago.

In the current political environment, government austerity measures seem inevitable. We are only debating the severity of the cuts, and the new levels of acceptable misery. I would argue, however, that the question regarding benefits for disabled individuals shouldn’t be, “How much less can we get away with doing?” The question should be, “How can we do more?”
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Wednesday, May 15, 2013

Consider These Issues…

Lemmings (Photo credit: KAZVorpal)
…because I can’t decide on just one topic this week.

Quote of the Week

“There's a whiff of the lynch mob or the lemming migration about any overlarge concentration of like-thinking individuals, no matter how virtuous their cause.”  - P. J. O'Rourke


Microloans are a wonderful way to add a little intimacy to your charitable giving. I’ve chosen a platform called where I can learn about all the loan candidates and choose an individual whose business plan or cause appeals to me. I put a certain amount of money in a fund with lots of other folks, and each month the borrower makes a payment to me and the other lenders. The borrowers do pay interest, but that doesn’t go to me. That goes toward maintaining the program. My plan is that once my initial loan is paid back, in approximately a year, I’ll keep my money in the bank and make another loan, and so on, and so on. Check it out.

The Reliability of Medical Research

I’ve always considered the gold standard for medical research to be studies that are double-blinded and placebo-controlled. This means that there is a group of patients receiving the treatment and there is a group of patients receiving a placebo, and neither the patients nor the doctors involved with the patients know who is who. Only in this way can bias be eliminated from the results.

However, this article shoots holes in that standard as well, and I have to agree. As long as there are financial or career advancement incentives to produce certain results, usually positive results, bias can find its way into even the most rigorously designed studies. Damn.

Be Suspicious of Stories

As human beings we love to hear a story. We want the world to make sense, and stories often leave us with that comforting impression. In our stories however, we impose order and meaning where often there is none, and this can be misleading.

Of course, you could argue that this Ted talk is itself a story, but that just makes my head hurt. Please watch this and let me know what you think.

15 Things That You Should Give up to Be Happy

I’m not 100% bought into the whole Zen philosophy thing, but I find much of it to be very practical advice. A lot of this thinking runs counter to the Type A personalities that serve as models for success in the United States. This article suggests 15 personal characteristics that we would be better off without. I agree most strongly with items 3, 6, 9, and 15.

The Most Astounding Fact about the Universe

Neil deGrasse Tyson is a brilliant astrophysicist. Recently, he was asked the question, “What is the most astounding fact that you can tell us about the universe?” I very much like his answer – which he gives in this three minute video.


As is so often the case, science fiction may have had the right idea, in the form of the movie Jurassic Park. But this video doesn’t sound nearly as scary.
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Wednesday, May 8, 2013

A Farewell Mother’s Day Present

The photo to the left is from Mother's Day, 1972. I'm the pink shirt guy.

My mother passed away in the autumn of 2008, so it’s been five years since our last Mother’s Day together. I’d like to share with you the video gift I gave her that year. It’s hard to know what to get an elderly, quadriplegic woman who is going blind from macular degeneration, but she seemed to enjoy what I threw together.

To learn just a little bit about how amazing my mother was, click here.

Re-watching the video below reminds me how fond I was of my old neighborhood, how hand-cycling used to make me feel so alive, and most of all, how much I miss my mother.

Click here for the YouTube version of this video.

Tuesday, May 7, 2013

Intrathecal Methotrexate – Update

2010 07 041On Friday I received my eighth intrathecal methotrexate treatment. The procedure was fairly routine. I had no post-lumbar puncture headache. In fact, I’ve gained so much confidence in the 25gauge needle that I have altered my post-treatment procedures. The oncologist requires that I lie flat on my back in his office for 30 minutes after the infusion. In his opinion, that makes the headache risk negligible. But, because I hate the headache so much, until Friday’s procedure I was also coming home and lying flat on my back until the next morning. Now, for the first time, I came home from the late afternoon procedure and stayed in my wheelchair until my normal bedtime.

So I’m settling into a routine with this procedure. It’s no big deal anymore. Every 8 to 10 weeks I get the infusion. For the remainder of that day I stay home and take it easy. My disease does not progress between infusions. I go back 8 to 10 weeks later and repeat the process.


Of course, if intrathecal methotrexate stops working tomorrow I’ll be sad. This reprieve that I’ve been fortunate enough to enjoy for the last 14 months has been wonderful. But I appreciate, as with life itself, that my lack of disease progression is fragile and possibly fleeting, and must never be taken for granted.

Note: to read all of my intrathecal methotrexate posts, click here.