Afraid

Some days I am just plain afraid.  I’m not afraid of the disease.  I’m afraid of the treatments. Not all of the treatments, just some of the treatments.  Right now, just the one I am supposed to call the pharmacy about. My homework on the interferon is done and I am awaiting its preapproval by the…

Jealous

Sometimes I am confronted with the person that I would like to be and the person that I am.  I’m pretty sure we all have areas that we struggle with in this regard. For me, nice homes are a trigger. My husband works for a retail lumber company.  He works with people who build beautiful…

Losing Sight of Normal

One of the first jobs I had right out of college was at a residential treatment center for children.  The section of the center that I worked in was called the shelter care unit.  We took children, ages 3 to 12, who had been removed from homes with unimaginable situations, or children who had been in…

How Much Was That?

After my trip to the OHSU gurus last week, the first assignment I was given was to go to the pharmacy and find out how much two different types of interferon cost.  I knew they would be expensive, I know that my insurance company needs to give preapproval for me to even get it, and…

Interferon Does Not Make You An Alien

Interferon.  Doesn’t that sound like something that might make you glow in the dark? Apparently, it does not turn you a different color, or light you up like a Christmas tree, or turn you into an alien.  I guess it just makes you feel like an alien…for about a month I’m told. Flu-like symptoms, complete…

Can’t Stop the Music

Growing up my family sang together.  For a year we toured the states of Virginia, Tennessee and Kentucky, singing at churches, parties, supper clubs.  We even made one of those vinyl cylinder’s called a record.  It was quite the experience for a 10 year old west coast girl.  The experience included culture shock, learning about…

Cataract Shmataract

For most people having a cataract is no big deal…cataract schmataract…whateva.  You schedule a surgery, choose whether you want to see close or far away, have your surgery and then…voila, you can see again.  It feels amazing, I’ve heard.  A miracle of modern science. Stop.  Stop right there.  While I agree with the idea that…

Please Pass the Salt

A few years ago, I was at a table with some colleagues having lunch.  We were served clam chowder among other things, and it was rather bland. I asked them to, “Please pass the salt,”  and they did.  What they did not do, at least with their words, was to tell me that I was…

Hope

A couple of months ago, I showed up on time for an appointment with my retina doc.  To say I was terrified is an understatement. I woke up that morning thinking, “Today could be the day.  It could be the day that I lose all vision in one of my eyes.” In fact, I was…

When Things Got Dark

“Every treatment we take on has risks.  All of them.  But, I keep choosing which risks to take, because I know what the darkness is like, and if it comes to that for me I will deal with it, but if I can keep putting it off, believe me, I will try.”   A few…

A Rheumatologist…really?

In the beginning, one of the things that I didn’t understand was why I was being sent to a rheumatologist.  After all, it was my eyes that were the problem not my joints. Since then, I have learned that uveitis is an inflammatory disease, and in my case, an autoimmune inflammatory disease, not unlike rheumatoid…

Pick Your Poison

In a couple of weeks I will be headed back over the mountain to see the experts at Casey Eye Institute.  The issue is my retinas.  They’ve been swollen for about two years, and we can’t seem to find a medication that will work, or have any impact for that matter, for more than a…