Jun 15 2014

A long-needed update

So I’ve finally gotten around to posting again, in part because I feel like I finally have something to write about.

I saw an optometrist last week who specializes in neurologic conditions, as I have been having problems with reading, eye pain, and left eye blurriness. After examining me he found evidence of previous optic neuritis (ON) in my left eye. He did OCT (optical coherence tomography) right there and found that not only had I previously had ON in my left I, but I had had it in my right eye, and it was more damaged than the left. He also had me look at different colors while covering each eye, and I found that when looking at most colors, they look cooler with my right eye and warmer with my left. It was really bizarre to see this, as I hadn’t even noticed that colors had changed any.

After the exam, he told me that he thought it was pretty likely that I have neuromyelitis optica (NMO), a rare disease that was very similar to MS but different. (You can read more about NMO here: Guthy-Jackson Foundation) In the last year, I have developed more symptoms in my legs that point to neurologic damage in the spinal cord, and my brain MRIs have been normal. My spinal MRIs have not yet shown evidence of transverse myelitis, but I have another one on Tuesday, and based on the problems I am having with my legs and back I think (hope?) they’ll see something.

I am still using my power wheelchair for most of my mobility. Living in Denver has made it so much easier for me to get out and enjoy life, as I can get on any of the fixed mass transit and get to almost anywhere in the city. I have also been rehearsing with Phamaly, a theatre company for people with disabilities, for Joseph and the Amazing Technicolor Dream Coat. We start performances July 10th and run until August 10th at the Denver Center for the Performing Arts in the Space Theatre. I’m really excited, as it’s the first show I’m going to be doing in a theatre-in-the-round.

I am going to try to post a little more frequently, but fatigue and pain (and acting) dictate my schedule more at the moment than I do.


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.


Feb 16 2013

Being ‘Disabled’

I just finished watching a TED speech by Aimee Mullins about being labeled “disabled.”  For those of you who are not familiar with Aimee, she was born without some of the bones in her lower legs and feet, and as a result her legs had to be amputated just below the knees at a young age.  During the TED talk, she read the entry for ‘disabled’ from a 1980’s thesaurus, which included words like ‘useless’ and ‘mutilated.’  She went on to redefine the true definition of disabled as having a crushed spirit and losing hope.  Aimee has never allowed her condition to do that to her.

I write this after having spent most of today in bed.  As I have mentioned in my previous posts, I have been sick since the beginning of July.  What started out as fatigue and memory problems has progressed to wide-spread pain that can involve almost any part of my body.  Today my stomach and the outside of my right leg have been taking their turn.  My stomach hurt so bad that I was curled up in bed in the fetal position for most of the morning, unable to even watch TV.  It seems like I am getting closer to a diagnosis, though even that is a shallow victory, because most of the diseases that are left could leave me with symptoms like this for the rest of my life.  My life is definitely changed, and in many ways, not for the better.

After hearing Aimee’s talk however, I no longer think of myself as having a disability.  Sometimes it feels as if my spirit is beginning to crush under the weight of all that I am dealing with.  Yet, hope is still there.  Not hope that my life will go back to the way it was before all this started to happen, because my life will never be the same again.  Being sick has changed me, and continues to do so.  Even if I got ‘better,’ my life will never be the same.  I now know what it is like to be sick with an illness, and not know what it is.  I know what it’s like to not even be able to plan for the future, as I have no idea what my physical abilities will be like.  I will never lose these experiences.  They alone have changed me forever.

I am sick, but I have been given a gift.  I can identify with my patients that have been in this situation, I know what it feels like.  I realize how frustrating it can be to be stuck in bed all day long when you have so much to do.  I know what it’s like to be teetering on the edge of giving up hope for the future.  And, I realize that although my body is broken, my spirit can still live on, and even stronger than it was before.  Suddenly, my life is an open book.  I no longer have a pre-defined path that I am on.  My new challenge is to figure out how to redefine my life, keeping in mind whatever limitations my body may have from now on.  I am not disabled; my value, worth, and dignity are still intact.  I am still full of potential.  I am still human.


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.


Dec 7 2012

About This Blog

Much of the focus on the healthcare discussion has been status quo versus a single payer system.  The idea being that if we can simplify payments and increase coverage, we can decrease overall costs and provide healthcare to millions of uninsured Americans.  As noble a goal as this might seem, it still ignores a number of fundamental issues.  We currently spend more per capita on healthcare then any nation in the world by a margin of $2000 per person in 2008.  With a total population of 300 million people, that equates to $600 billion dollars a year more than any other nation.  Yet based on The World Health Report in 2006, we ranked 39th for infant mortality, 36th for life expectancy, 43rd for adult female mortality,42nd for adult male mortality, and overall ranked 37th.  Changing who pays for healthcare in this country isn’t going to fix these problems.  The system needs to change.

Nothing less then a complete reconstruction of healthcare in this country will suffice.  43 million people in the US lack any sort of healthcare coverage.  Many of these individuals use the emergency room for primary care issues, or for medical problems that could be handled at a much lower cost by physicians in the community.  Preventative care is also non-existent for this population.  Uninsured people received $116 billion in health care from hospitals, doctors, and other providers.  37% of that was paid for out of their own pockets and government programs and charities covered another 26%.  That still left almost $43 billion of that care unpaid for.

Of the persons who do have coverage, many are either not covered for the care they need and are required to pay for medical care out of pocket.  Bankruptcy rates with significant medical causes (medical debt greater than $5000, loss of income due to medical problems, or mortgaging of the debtors home to meet medical expenses) contributed to as many as 62% of bankruptcies in 2007.  This was increased from a rate of 46% in 2001.  There is also little to no coverage for preventative medicine, including diet and exercise education, which could be used to help prevent or reduce numerous medical conditions.

A single payor system will likely help ameliorate but not solve many of these problems.  Putting band-aids on the current system is analogous to the direction that healthcare has gone in this country – we are treating the symptoms and not the problem.  However, the state of healthcare in this country is also indicative of many of the problems we are starting to face as a society.  The idea of community is becoming more and more fractured.  Many of us do not know our neighbors anymore, at least not like we used to.  As a country, we are becoming more and more focused on productivity, and less worried about human capital.  Are individuality has become so strong that many often think more about what is good for themselves than what is good for society as a whole.  This mentality needs to change, or else we will continue the downward slide that has already begun.

My aim with this blog is to comment not only on healthcare, but also on various aspects of our society.  I hope that it will help people reevaluate many of the problems we are facing.  There are many ideas about where we can head from here as a country, and it is important that we take as many viewpoints into consideration as possible.  Feel free to comment on any of my posts, I would like for this to be somewhat of an open forum.  As long as responses are respectful and thoughtfully done, I will not suppress them.  I hope you enjoy my blog.