Step 1: Ignore all signs that you are going blind right before your eyes.
A week before I was admitted to the hospital for passing out in my shower, I started experiencing some very strange visual disturbances. One morning while at work I noticed that everyone's head looked "dented". Of course, all of my coworkers told me this was very scary, but I was operating under the premise that if I kept acting like nothing was there, then it wasn't. Add to this that my visual acuity had decreased dramatically in the weeks before, and it is nothing short of a miracle that I can see this screen in front of me. Honestly. Miraculous.
Step 2: Make sure that, once you are diagnosed, you are prescribed an ineffective amount of the drug meant to save your sight and relieve your symptoms.
I had no idea what I was dealing with when I was diagnosed with IIH, in fact, most of the doctors around me had never even heard of it! Anyway, I was prescribed 250mg of Diamox to keep my cerebral spinal fluid in control after my spinal tap showed I had an opening pressure of 60. This all sounded copacetic to me, but when I felt just as bad a week later for my first follow up as I did when I was admitted, I wasn't surprised to find out that I needed to be on 1000mg (this was eventually bumped all the way up to 2000mg!!) to smack my body back into order. The uneducated doctors essentially erased most of the good the spinal tap did for me. Thankfully, Diamox paired with Prednisone put my system in overdrive toward a life of less cerebral spinal fluid.
Step 3: Take tons of steroids (Prednisone) even though you are a "positive responder" to steroids.
Here's another one of those things no one could have ever known at the time. When I started to taper off the steroids in August of 2009 (after two months of some pretty high doses), a bunch of strange things started happening. Although I hadn't been able to read, drive or see much of anything clearly since before I was diagnosed in June, in the middle of August I lost the ability to see color and suddenly needed my husband to help me walk anywhere - even our home. I could see shapes and shades, but I had lost depth and any kind of clarity at all. I found out at my opthalmologist's office on a Friday, after pretty scary couple of weeks of diminishing vision ending in beyond legal blindness, that the steroids were to blame.
Step 4: When you lose the ability to see color, don't call your doctors or run to any emergency rooms, just wait until your next appointment.
My mantra these days is: Hindsight is 20/20, even if I'm not! because I honestly can't understand why, on God's green Earth, I was so stubborn about all of this. It seems so incredibly clear to me now that I needed to run, while on the cell phone with all of my doctors, to the nearest emergency room when my vision started faltering again. Instead, once my doctor saw me, I was rushed to UMDNJ in Newark, NJ for an emergency eye surgery. Terrifying. But sight saving, so I really can't complain.
In the end, the shortest path to blindness, or any kind of debilitating illness, is embedded in step 1: ignore your body. However, to nearly go blind, or to be saved from yourself in any instance, surround yourself with an excellent support system of friends, family and well-educated specialists. Reach out to communities who know what you are going through (I highly recommend DailyStrength) and, above all else:
This post was written in response to a prompt provided by The Scintilla Project. The prompt I chose to use today was:
Tell a story about something interesting (anything!) that happened to you, but tell it in the form of an instruction manual (Step 1, Step 2, etc.).