Week 3 Recovery Update

Posted on February 21, 2012 by

It’s now been three weeks since I had the first symptoms of Guillain-Barre. Here’s a quick update on what’s going on.

I am still recovering. I have much less numbness/weakness than I had last week. If I overdo it, or immerse myself in hot water, my hands and feet will go numb again, but it fades pretty quickly. Early mornings and evenings are generally the hardest parts of the day. I have a little bit of numbness in my hands when I wake up. By the end of the day, fatigue has me restricted to the couch / short trips around the house. Occasionally, my left arm will go numb for a few seconds if I move it in certain directions, but I think that’s more related to nerve damage done when I dislocated my shoulder last summer.

When I was healthy, I could get by on 6.5-7.5 hours of sleep per night. I am closer to 9 hours now, and sometimes 10, and I take a short nap after lunch. I’ve been working myself back up to 4 hours of work from home per day this week. Anything more than that, and I fall apart, especially if I go more than 2 straight hours in front of the computer. Work has been very understanding about it, and I really appreciate that.

I had an appointment with my neurologist last Thursday, and unfortunately, the test for the Miller-Fisher variant of Guillain-Barre came back negative. I say ‘unfortunately’ because it means we still don’t have an official final diagnosis of GB. There are very few ways to confirm it absolutely, especially with people who already have CMT, and that test was one of them. Based on the initial presentation of symptoms and the progress to date, we have every reason to believe that this still is Guillain-Barre. The MRI was clear when it came to demyelination in the brain during that first day, so that should rule out MS. If the symptoms don’t continue to improve, or somehow get worse over the next 6 weeks, we’ll do another MRI and go from there. Otherwise, we’ll do another MRI in 6 months.

The main challenge is for me not to overdo it right now. I want to work. I want to write. I want to get back into shape. At this point, however, I haven’t even tried to walk down to the mailbox. I’d love to be reading books by the dozen right now, and writing reviews, but I’ve found I can’t keep my brain and eyes focused on reading for very long. They just tire out. I want to blog about some current events, but I fear my arguments aren’t quite as organized as I want them to be. I just have to be patient.

In the meantime, I’ve been watching TV. A lot of TV. I’ve seen a lot of documentaries on Netflix Instant Watch, and am whittling down my Netflix DVD queue. We try to time it so something new is always coming within the next day or so. I try not to watch stuff that is a complete waste of time, but have gotten a few movies that somehow made my list, but wouldn’t have been on my wife’s list. There’s probably not going to be a better time to do that.

I’ll admit that there have been some rather frustrating moments, but I just have to remind myself that at three weeks, I’m doing extraordinarily well compared to some people who have had GB. I’ve read about people who have taken months or years to heal to the point of being even partially functional. Sure, I do still worry that there is a 1% chance this isn’t GB, but that is not something I can control, and I found that having switching from worrying all the time to having a more positive attitude, really helped my body to recover more quickly. That and laying around doing absolutely nothing all weekend.

Hopefully, by this time next week, the numbness will be a thing of the past completely, and I’ll be closer to getting in full days. Then I can justify getting some editing done on Nowhere Wild, and work it into the shape it needs to be in to go to publishers sometime this spring.

One day at a time. One week at a time. And we’ll be through this soon enough and back to normal.

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At the Two Week Mark

Posted on February 14, 2012 by

Tomorrow morning marks the two week mark since I had my first symptoms of Guillian-Barre. It seems longer than that, for many reasons. The virus that probably started all of this, had me out sick from work part of the week before that, so I really haven’t had a normal week in the last three. I’ve forgotten what normal is at this point.

For the most part, I am feeling much better. My leg strength is starting to return. I don’t have to hold onto walls when I walk, and my legs don’t shake with every step. They are still weak, but I see gains there every day as I get more mobile.

My vision is back to normal, so I’m not getting the headaches I was at the beginning, but because I’m laying around more, I’m prone to get migraines that require ibuprofen and ice packs when my neck decides to act up. One of the benefits of getting an MRI done as part of the diagnosis process was that we got a really good picture of my why I get these migraines, and once I recover from the GB, we can treat that with exercise and stretching.

The numbness is still an issue, especially in my fingers and left leg. Typing a lot exacerbates the tingling in my fingers, and the leg numbness comes and goes depending on time of day and fatigue. First thing in the morning is generally my most numb time of day, as if my brain has shut down my skin overnight to feed energy to somewhere else in my body, like Jean-Luc Picard ordering “all power to the main deflector.”

I am working again, though from home and not full days yet. I worked about 4.5 hours today, and laid down on the couch and napped for an hour this afternoon. I absolutely needed it.  I expect it will be early next week before I’m back to full days, and I have no idea when I’ll be able to go into the office on a regular basis.

Once I’m back to work full time, and have energy to spare, I will resume my more aggressive writing and blogging pace. I hope I don’t lose too many regular readers through this slow time. I have to budget my energy right now, and even though I have dozens of ideas for blog entries, my priorities have to be my health, my family and my paying job.

But I truly do miss blogging and hope to be back very soon.

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Notes from the Couch

Posted on February 10, 2012 by

I’m still recovering from this dastardly little affliction called Guillian-Barre. It’s hard to be patient. I probably overdid it yesterday, which meant I didn’t sleep much last night and that meant I felt worse today than yesterday. At times the numbness in my hands makes it feel like I’ve got thick, woolen mittens on my hands, and thick socks / leg warmers on my legs. Not that they are hot… they feel stifled. It’s quite annoying to type this way.

I’ve spent much of the week on the couch watching documentaries, mainly Ken Burn’s series on The Civil War. I didn’t know much about the Civil War prior to watching this series. I knew far more about British history than US, and watching this series really went beyond filling in the gaps, to learning about very important events in US and World history. I had no idea of how horrific some of those battles were, and how many mistakes were made by the North’s leadership that could have ended the war years earlier. But the failure of the Union Generals forced Lincoln’s hand to emancipate the slaves, so in the end, those who failed to end the war sooner rather than later, probably ensured that the slavery issue was resolved by 1865 so as not to fester into the twentieth century. (My theory, not one presented in the series.)

After watching that series, I can honestly say I have no desire to become a Civil War buff or to visit those battlefields. It was, perhaps, the most brutal of all wars, and there were moments in the documentary that shocked and repulsed me. I could not immerse myself in the study of that without depressing myself. History has always fascinated me for cause and effect. Slaughter on that scale has no appeal.

For a couple of days, I spent a lot of time in dark rooms with my eyes closed to let my eye muscles rest. But my brain was on, and when I could type, I did. I plotted out two entirely new novels in short form (1000 words per outline). I don’t have any time or energy to work on these right now or in the foreseeable future, but I would easily give up evenings of watching TV to write them in some sort of word blitzkrieg when I get caught up after I regain my health.

I’m going to take it very easy this weekend, in the hopes that by Monday, I’ll at least be able to work part-time from home. Perhaps another novel idea will jump into my brain. I’ve found you can never have enough of those.

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Recovering at Home

Posted on February 8, 2012 by

A quick status update on my health. It’s hard to believe that so much has happened in the past week.

My condition is improving. I was discharged from the hospital on Monday afternoon, and have spent the last two days either on the couch or in bed. Feeling has returned to my face and to parts of my arms, but the numbness still coats all of my fingers, and the lower half of my body from the waist down, though I do have small portions of my legs with some feeling. The more I use my hands, the more numbness I get. However, my vision is nearly completely normal at this point, and that is a very good thing.

Fatigue is my enemy. Simply taking a shower can exhaust me, and I plan multiple naps into my day in order to try to keep the symptoms improving. I am getting about the house with the assistance of a walker, though it seems less necessary today than it did yesterday.

While I fear it will be a long time before my recovery is complete, I do see daily progress, so it is just a matter of giving my body time to heal. I am watching plenty of documentaries on NetFlix, including Ken Burn’s Series on The Civil War and The National Parks to occupy my mind.

I did a little bit of work for my day-job today (less than an hour), but I won’t even consider doing any writing (with the exception of these few blog entries), until I am able to earn my money again there. I have a lot of writing I want to do, but I have limited energy and none to spare.

I’ve also dropped off the map on Twitter, since that seems to take too much energy to maintain these days, so if you need to contact me, it’s best to do it through this site (or email if you have that).

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Status Update

Posted on February 6, 2012 by

First, I want to say thank you to all those who have offered support over the last few days. It has meant so much to know that my wife has had so much help, and that takes a great deal of worry off my mind.

I am still in the hospital, but was upgraded to stable condition on Saturday night, and if all goes well, I should be going home late this afternoon.

Unfortunately, going home doesn’t mean I am healthy yet. Numbness still affects my legs and hands and face, and I’m having severe issues with my vision, especially inside of 4 feet. I can see, but it is blurry, and my eye muscles are constantly straining to focus. All of that should eventually come back to normal, but it may be a while before it does.

I had never heard of Guillan-Barre before last week (I have the Miller-Fisher variant), but I’ve been told many times now how important it was for me to get into the hospital when I did. Coming in a day later could have put me on a respirator and made me temporarily quadraplegic. GB is scary stuff. I can’t stress enough that if you start getting these symptoms that you should get to the ER immediately.

I’ll update again as energy permits later this week.

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The last three days

Posted on February 3, 2012 by

Last week, I had a rather inconvenient lower gatsro-intenstinal virus. It wan’t the worst I\ve ever had. It was pretty much gone in 3 days, and then turned into a headcold. By Tuesday of this week, I was pretty much beter.

Then came Wednesday morning. I woke up with numbness in my fingers, in my lips and in my tongue. I thought I had pinched a nerve in my neck. I had a dentist appointment Wednesday morning, and mentioned it to my dentist, and she recomended I see my doctor. I decided to make a chiropractor appointment for that evening. During the afternoon, the numbness began to creep up my hands, and started to affect my legs. I went to Chiropractor, but that didn’t help. After dinner, I took myself into the Convenience Care clinic, and though they couldn’t find anything wrong, they told me that if it persisted, or got worse, I should take myself into the emergency room.

By 4 AM Thursday, most of my face was numb, as were my hands and legs. I took myself into the ER. It’s a good thing I did. They did a head CT and blood tests, which came up with nothing. They then did an LP (Lumbar Puncture) which showed some abnormalities. At this point, they started discussion two posible diagnoses: Guillan Barre Syndrome and MS. I didn\t know much about the former, but the posibility of the second scared the bejesus out of me.

At that point they admitted me to the hospital and got me right in for an MRI on my head and neck. We didn’t get the results of the MRI for a few very tense hours. The verdict was that it was unlikely to be MS, but likely to be Guillan Barre. The good news is that there is a treatment for Guillan Barre, and I am now on it. The bad news is that the treatment doesn’t always work, and provides differing results by patient.

I’m writing this update from the Critical Care Center in the hospital where I will be until at least Monday. I still have little feeling in my fingers and legs and face / tongue, and my vision inside a couple of feet is all blurry. I can see to watch TV (and I’m writing this via a wireless keyboard hooked up to the TV). I apologize for any typos. It’s hard to type with numb fingers and an O2 sensor attached to my little finger.

I don’t have a recovery prognosis yet, but I am hopig that since my symptoms have stabilized over the past 24 hours, that they won’t get any worse. Recovery times can vary from 3 weeks to 3 years. I’m obviously hoping for the former. Though I am frustrated right now with being sick (again), my spirits are pretty good. The nurses are great and are doing everything they can to get me back up on my feet as soon as possible.

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How to Depress a Writer

Posted on January 30, 2012 by

Today, though I was fighting the remains of the cold / flu that wiped me out most of last week, started off well enough. I actually got on the train and went to work, which meant I was able to return to my regular writing schedule. I opened my laptop to the place I left off last Monday, and resumed planning my next novel. I have the beginning, and I have the ending. I just had to get the two to meet in a logical and gripping middle. It’s still a work in progress, but I’m getting there. Finding words in the ether after a break is always a calming feeling.

During the middle of the day, I came across two articles on the web that turned my sunny outlook a little bit gloomy. First, this story from The Guardian regarding “the self-epublishing bubble” in which Ewan Morrison parallels the economics of the housing and internet bubbles to the publishing industry. It’s a fascinating and frightening read, and I recommend it for authors, both self-pubbed and not. I actually recommended to the folks at Amazon in the hopes that they realize they are killing the goose that laid the golden egg.

At the present time, I have no intention of self-publishing. I worked too hard to get an agent, and am working too hard to improve my work to make said agent’s job as easy as possible when she goes to sell my polished work, to give up just yet. But I am glad that self-publishing is out there, so that should my novels not find an appropriate audience in a major house (through no fault of my own or my agent’s, of course), I could self publish and make it big that way. I’d like to think that I understand what is involved in self publishing, and that because I understand it, I would be one of the few that could sell more than the 100 book average.

But the article seems to drive a spike through the theory that self-publishing is here to stay because sooner or later, those authors who were only in it for the money, will find out that the money isn’t there and their time is better spent elsewhere. That’s great for those of us who truly love to write, right? Well, not exactly. Morrison theorizes that once the publishing bubble bursts, there may not be much left of a once grand industry to allow the rest of us to be able to reach the audience we need in order to make ends meet.  Had I been writing ten years ago, it seems, my chances of breaking in to the market and breaking out as an author would have been much better, assuming the same quality of work. But I wasn’t writing back then. I was goofing off. That’s a little depressing.

Then, later in the day, I read John Scalzi’s take on the legacy authors leave behind. This one struck a bit hard, because honestly, I place a great deal of value in the idea of leaving some kind of legacy from my life. I always have. When I was a teenager and a college student, I wanted to work for NASA to help put a man on Mars. That was something I could be proud of at the end of my career. I could tell my kids that I was gone all day long, five days a week (or more) because I was working on something the human race needed.

But my aspirations for contributing through my work were short lived. Instead, I found myself working on car assembly line systems, junk-mail billing systems, financial systems and Y2K systems for morally and ethically challenged companies, and revenue management systems for airlines. Those early years were fine for my career, but not great for my pride or optimism. I’ve pretty much given up on working on ‘great ideas’ for work, and now see work as something that enables me to take care of my family. Don’t get me wrong – I completely realize that my family is my true legacy and I hope that my kids find something they love to do and do it well and leave their own positive mark on the world.

However, it doesn’t stop me from hoping that something I write won’t leave a legacy as well. I call it my “Beatles moment”. I look back at the music those boys from Liverpool created, and I know that a hundred years from now, their music will still be played, and will still be inspiring people. Sure, it may not be to the same extent that it was played in the 60’s and 70’s, but it will still be recognized when heard.

Notice that I didn’t say I expected to be as famous as The Beatles. I said I ‘hoped’. Perhaps it won’t be me, but one of my stories that is instantly recognizable, even though my name may be forgotten. Perhaps someone will read one of my stories and be inspired to write one of their own, which inspires some grand idea for someone else. I hope for a legacy of story-telling that continues on through me. That legacy was inspired by Farley Mowat and Johann David Wyss and Stephen King and Edgar Rice Burroughs. I want to be part of that chain.

Scalzi, in his so-effective way, pointed out that of the top 10 books in 1912 (100 years ago), not a single one was one that I have read or is by an author I have heard of. Other people commented that they were aware of the books, or of the authors, but I was not. And my hopes on leaving another long term legacy through my writing, drooped just a little more.

Now none of this would have affected me so much had I not already been facing a few doubts of my own coming out of the weekend. I haven’t written a lot lately, and I always get a bit glum between books. Also, I just read a very good book by one of the members of my writing group. This book was a very early draft, but seemed to me to be head and shoulders above anything I write. The author tells the story so effortlessly, and there doesn’t seem to be much left to do to it. I measured this against my writing. I have been working on some of my stories for over three years, and I still have at least ‘one more edit left’, and can reasonably expect that just one more edit won’t do. The story doesn’t seem effortless yet, and maybe it never will. While I am a better writer now than I was three years ago, and the stories come easy, the prose does not, and that will always worry me.

Tonight, on the way home from work, I pulled out the laptop and worked again on the plot for my next book.  I’m very close now to tying the beginning to the end. But it was a bit of a struggle, and my mind wasn’t fully into it. Perhaps tomorrow it will be. Perhaps tomorrow, I will read through some of my writing and realize that “Hey, this isn’t so bad.”

Maybe I’ll play The Beatles as I write tomorrow. Maybe “Let it be”. That usually does it for me. But I’ll stay away from “Paperback Writer”. Just for a couple of days, anyway,

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