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.

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.