At the Crossroads

For some of us, we are born into a life that invovles disability. For others, there is one big initiating event, perhaps an accident, that thrusts us into disability.  And yet for so many others, it is a slow path we travel, with little bumps, and at some point, we find we have been in disability for awhile and just didn't know it.

So when did you cross the road into disability?  I don't remember seeing the signs, but I look around and know I am there now.  I had problems with my neck and back since I was eleven years old.  By the time I was in my twenties, it was affecting how long I could walk or stand.  By my early thirties, the neuropathies from my degenerated discs (both cervical and lumbar), stenosis and spondylosis were affecting the use of my right arm.  And now, at the ripe old age of 37, it is just one part of my daily pain and I know it is likely to get worse from here.

There were other convergent paths I travelled at the same time.  When I turned 30, I had a series of six strep throat infections within six months, which I believe served as the trigger for my fibromyalgia.  First I was relieved that there was a name for all I had been feeling.  Then I was overwhelmed as I learned all the things I had been feeling were part of this condition that seems to affect every part of me.  Then I was frustrated as I learned that understanding of this condition is scarce, treatment is ill-defined and escape is little more than a dream.

It is with the greatest sense of irony that I look back now and remember that day in my rheumatologist's office, sitting and looking at all the colorful prescription brochures on his table, most of which treat rheumatoid arthritis.  I actually though to myself that I wished I had RA because at least they have all these treatments options designed for it, unlike fibromyalgia where the first drug to be approved for its treatment has just come about this past year.  It never occurred to me that I could have both, that it's not either/or, that with all I had been through that more could come.

It was my burst appendix in the spring of 2006, another massive infection, that I believe triggered my RA.  Although I was already seeing my rheumatologist for the fibromyalgia, it still took eight months from time of symptom onset to diagnosis.  And it's been another eleven months of trying treatments and playing the waiting game to see if they work before starting over with something else.  During that time, without even realizing it, I was moving further down the path.  The stiffness and numbness in the joints and the sudden acute pain further affected my ability to walk and stand, to concentrate, to use my hands, to get up from sitting, to simply be comfortable and to function.

As I go down the path, I see myself in the mirror, and I don't look sick, don't look the way disability looks in my mind, in society's mind.  There are day where I can function almost normally, although it may take me days to recover from it afterward.  It takes a lot of understanding from those around me, and luckily for me, they do understand.  I always talk about it.  How else will people know if no one talks about it?

But still the hardest audience is myself.  Am I sick enough to need disabled parking?  Am I sick enough to need a mobility scooter?  I can still walk and for some reason I thought that meant I didn't need either one.  A few years ago I was ready for the disabled parking placard and it has been a lifesaver.  But it wasn't until this past February that I decided that if I couldn't go shopping in large stores or take a day trip to visit an attraction because of my disability, then I was sick enough to get a mobility scooter to use for those times.  Touring around the breathtaking beauty of Longwood Gardens in June for five whole hours, a trip I never could have done otherwise, made it all worthwhile.  (see my trip photos below)

But what about work?  I work full-time in a job that is primarily administrative, but has some physical elements as well.  I have been pushing myself to keep up, often crying on the way home, dreading each morning's routine of waking at 4:30 for the first pain med, waking again at 6:00 to make the huge 2-hour effort of getting myself ready at the worst time of my day.  Last week, on the day of a very important customer event, I woke up and even just turning over in bed could feel the terrible pain in my feet and ankles.  Then I tried to stand and walk and knew I just couldn't.  I don't remember passing the crossroads, but I knew I was already on the other side.

My doctor and I have decided that it's time for temporary disability while I continue my treatments.  I'm hoping it will be a short leave and then back to work, but I just don't know.  This land isn't so familiar to me.  But there are lots of nice, helpful people here, who are thoughtful and vibrant, and I am glad to have their company.