Apr 5 2013

Update

This post is going to be mostly an update on what’s going on in my life. Unfortunately I haven’t meant able to post in a while because of my healthcare issues as well as being busy with a number personal things. I’ve also had a lot more trouble typing because of weakness and pain in both of my hands. I recently got a copy of Dragon Dictate software, which I’m using to write this article. I have experience with Dragon from when I was practicing medicine, and it makes it a lot easier for me to write without getting tired.

I have seen a number of doctors, and have basically ruled many diseases, including lupus and Sjogren’s syndrome. So far, my tests with neurology has been mostly normal except for one ‘demyelinating’ lesion on an MRI of my brain, which has not changed in over six months. While this does not necessarily rule out the presence of any diseases, it makes it less likely that what I have is certain things. Unfortunately, we still haven’t ruled out multiple sclerosis, and my symptoms are beginning to look more and more like it. I currently have significant weakness on the left side of my body, to the point that I am using a four wheel walker to get around. I’m am also going to be getting an electric wheelchair in the next few weeks. I recently got hearing aids, and I use them full-time to better understand speech. While I wish I didn’t need any of these devices to help me function, they do improve my life and make it easier for me to do the things that I love. Overall, I’m trying to keep a pretty good outlook on my situation. I wish I had a diagnosis, but I’m probably going to have to wait a while for that. I realize that I don’t have any control over what is going on, which is making it easier to let go somewhat.

I am currently living in an extended stay hotel that is wheelchair accessible. This summer, we plan to move to Denver so that I can get around using mass-transportation more easily. I also have a number of disability support groups that I go to up in Denver, and it will be easier for me to get to these once we move. We still have a lot to figure out with our move, but are going to start working on that once we are settled.

One random aside, I’m going to be deleting my Facebook account as they have decided to start charging when you try to send messages to someone you’re not friends with. It seems to me that the movement toward social media is making our lives a lot more public and therefore making it easier to market to us. I’m getting more and more tired of rampant capitalism, and have decided to no longer participate in sites such as Facebook. If this makes a paranoid, then so be it. I can honestly say that Facebook has not improved my life at all, and is just another thing it seems like I have to deal with. With everything going on in my life right now that’s the last thing I need.

I have all sorts of thoughts for more intellectual articles, and I hope to have another one written soon. I’m mostly happy with how well Dragon Dictate has worked for writing this article, and it is likely that I will be able to write more often in the future. I also hope that it will help me finish the novel that I’m working on right now. I’m going to get a contact page up on my blog soon, but until then if you leave comments on this post I will respond to them when I am able.


Jan 18 2013

Plans for the future…

I was on the East Coast for the holidays.  I spent Christmas with my family in New Jersey, and then I traveled down to West Virginia where there was a Healthcare Justice Gathering at Gesundheit, Patch Adam’s land where he’s going to build a free hospital.  The experience gave me the chance to think about what I can do to improve access to healthcare in this country, and also about how I want to build community.  Since I’ve gotten back though, I’ve spent most of my time in bed with fatigue and muscle spasms.  Because I’m an overachiever (and an INFP), all I can think about is how much I want to do to save the world.  I fear though that instead, I am going to be this tired for the rest of my life and not be able to do anything.

You see, I never planned to be sick.  That was never in my thoughts about what I wanted to do with my life.  I mean, I had gotten through a Biomedical Engineering degree in college and then graduated med school.  I was on my third try at residency after having my own practice for a year, was working occasionally on the side, and was planning where I wanted to work when I graduated.  In June, I started having problems with my short-term memory, but I chalked it up to working too much and not getting enough sleep.  Things started to get worse in July, when I couldn’t remember the word ‘pharmacy’ while I was seeing patients.  That was when I realized that I needed to at least take time off to rest.  I thought that maybe I was just working too much, or I had lyme disease and would get better with antibiotics.

I had put in for a month of medical leave, but as the end of August approached things seemed to be getting worse and not better.  On top of memory problems, I have had worsening fatigue, dry eyes, dry mouth, balance problems so bad that I now walk with a cane, muscle spasms in my legs, and problems tolerating both heat and cold.  August turned into September into October, and now here we are in January.  I’m in bed much of the time because I’m too tired and hurt too much to even be able to do things like the dishes in one go.  I guess I forgot to include ‘doing the dishes’ as a major life goal.

I have lived a relatively healthy life, in part because I wanted to live, and be functional, to a ripe old age.  I have been gluten free for over 3 years now.  I was eating mostly vegan when all this started, and I was also taking vitamins and not drinking a lot of coffee or alcohol.  I started running 2.5 miles 3 times a week for exercise.  I was generally healthy, had more energy, and felt good. I still support a healthy lifestyle, but I realize now that part of taking care of myself was that I felt like I had control over whether or not I got sick.  I certainly had improved my odds of staying healthy longer, so maybe I had included illness in my plans, or at least how to avoid it.  Of course that assumes I have control over every aspect of my life (because I do. No really, I swear it…)  I guess that’s the kicker: I’m not in control of everything, and sometimes s#$t, or chronic illness happens.


Dec 30 2012

New Years and Changes

Every year, as I enjoy the holidays with my family I’m always surprised how much things change: the town I grew up in, my family, my sister’s children.  For me, a lot has changed in the last six months.  In June, I started having problems following a conversation when discussing patients with my fellow physicians.  At the time, I was on a stressful rotation in my residency, and so I chalked it up to that.  I then started having problems with fatigue and balance as well, and the combination of my symptoms advanced to the point where I needed to take a leave of absence from my residency.  Being sick and unable to work has given me a lot of time to think about the role change plays in my life, and about change in general.

I have never been afraid of change, and I try to view it as an opportunity to grow.  I identify myself as buddhist, at least in part.  One of the main teachings in buddhism that is important to me is about the impermanent nature of life.  Life is not static, and things are always changing; that is simply the nature of things.  For me, the holidays help to emphasize the changes that are going on in the world I know, as well as the changes that are happening to the people I care about.  It is exciting to watch my nephews grow up and become their own individual people.  It’s amazing to meet my computer teacher from elementary school again, and realize that the last time I saw her was almost 20 years ago, and yet I still recognized that I knew her.

Despite this view of change, part of me is still sad about the impermanence of things in life.  I realized this while I was riding in the car with my family around the town I grew up in.  Open spaces that once were are now filled.  Business that I used to frequent now closed.  I know that it is inevitable for changes like this to happen, but on some level I am afraid of it.  It came to me that the reason seeing this change makes me nervous is because it emphasizes my own mortality.  Life moving forward means I’m moving forward: towards death.

It is said that death and taxes are the only things that are givens in life, and death is usually a scarier proposition then taxes.  Change is also a given in life, and it scares many people almost as much as death does because, in a way change lead to death.  We all must grow old, and at some point we will die.  That is simply a fact of life.  My New Year’s resolution is to embrace the change in my life and to try not to be afraid of it.  We may have some control over the direction of where my life heads, but so much is out of my control.  Change is going to be there regardless, so I might as well roll with it.