History 101

I feel I should give a little insight into my disability. My disorder is called Choroidal Osteoma. Calcium deposits form in the back of the retina, and weak blood vessels are associated with it. If it were just the calcium deposits, my eyesight wouldn't be compromised. It's the weak blood vessels that cause the problems. Any amount of great pressure change causes the blood vessels to rupture and bleed. The bleeding eventually stops, but the scar tissue that forms during the healing process is what blocks my vision. The doctors have informed me that surgery isn't an option. The surgery would do more harm than good because of where the scar tissue is located in the eye.

I'm not totally blind. My left eye has no central vision whatsoever. I see blurry shapes and light around the edges. My right eye has some central vision, but what I see out of that eye is distorted and fuzzy. I can see where I'm at, and most of the time avoid running into things. If one of my dogs runs in front of me however, I'm sure to trip over it.

I've been to numerous specialist, had 100's of tests, and been told that I'm going to be this way for the rest of my life. I'm told to try my hardest not to get sick, such as with the flu, since vomiting seems to be what causes the episodes the most. I was told by one doctor that even just riding in a car changes the pressure in your eyes and could cause a weak vessel to rupture. I've never had that happen yet, but the possibility is always there. I never know when it's going to happen again.

I've had four episodes since 1998. The first time it happened, my daughter was only a few months old. I had a terrible cold. A coughing fit sent me to the bathroom to vomit, and when it was over, I couldn't see out of my left eye. I was terrified! I went straight to the ER, and the doctor there sent me to Milwaukee to the eye institute to see a retina specialist. Being a rare disorder, this specialist had no idea what was wrong. He sent me for a number of tests with my regular doctor thinking there had to be some underlying medical issue. I had blood work, a mammogram, a vaginal exam, and a number of other tests. Everything came back negative, and I had no answers. The bleeding eventually stopped, and I was left with a blind spot in my vision.

It happened a second time a year or so later in the same eye. This time I was sent to a different specialist in Green Bay. This doctor didn't know what was going on either, but he informed me that the calcium deposits were in the other eye as well. After the bleeding stopped this time, I was left with very little vision in my left eye.

It's happened a couple of times in my right eye as well since then. The last time it happened, I went to a specialist in Sheboygan, who finally diagnosed me with Choroidal Osteoma. Nothing can be done, but it was great to finally know what I have and to know what to expect.

It's amazing how the human body and mind adapt. At first, I was devastated. I couldn't imagine how I was going to function with such limited eyesight. I was scared to death! But, as time went on, I learned how to function. Every day activities in my own home are a no- brainer now. I clean my house, cook my meals, and even watch TV just like I always did. It might take me a little longer now, but I can do it. My computer is adapted to enlarge everything on the screen, and I have voice activated programs that help me with what I can't see.

There's only a couple of things that I really miss doing that just aren't an option anymore. I really miss driving. I have to have someone take me everywhere I need to go. It's hard to be independent when you have to rely on someone else to haul you around everywhere. The second thing I miss is reading a book. I used to love to read. Stephen King is my favorite author. But, I've started listening to audio books. It's not quite the same, but better than nothing.

So, there you have it. I live my life as normally as possible, and pray it doesn't get worse. I'm thankful for the sight that I do have. I know it could be much, much worse.