Introducing: My Disease

Glau-coma (glaw-comb-uh)

  1. A word you don’t know until it affects you or someone you love.
  2. A disease with symptoms including uncertainty and anxiety about the future.

The thing that I often forget about my condition, and that’s the fact that it’s progressive. It’s not an obvious disease with many symptoms, and it moves slowly so it’s often hard to tell when things are getting worse. That’s why my condition Glaucoma is often called “the thief of sight”. I was reminded of these facts when my at a routine appointment, my doctor began to share concerns with me about my left eye.

The drain in my left eye (which has a fancy name that I can’t remember) stopped being as effective and as a result, fluid was building up in my eye causing damage. So my doctor started to talk about options and all the things we had to consider; my departure to college and my access to health care far away from my eye specialist. When set a details and awaited contact from my doctor’s secretary.

As all of this was happening, I’m reminded of the hardest parts of my disease. It’s not having surgery, although that can be tough and sometimes uncomfortable, I’ve been under anesthesia probably over 30 times. On top of that eye surgery is probably one of the least invasive surgeries you can have. So yeah, surgery is not something I want to do by any means but it doesn’t make me as apprehensive as you might think.

The hardest part is being reminded of the inevitable. After over 20 surgeries and years of a rigorous schedule of medicines, my disease will still be there. My confidence has taken time to build yet, I know that someday there will be another challenge for me to overcome. A new state of being for me to accept. Perhaps the worst part in all that I just mentioned is the “someday”. I have no way of knowing when I’m losing more eyesight, or even if I’ll wake up tomorrow with half the vision I have now.

I’m not writing this as a sob story about the painless slow-moving disease that glaucoma is. I know that I’m incredibly lucky, because I’ve never had to fear that my disease would take my life. However, Glaucoma is still taking something precious from me. The ability to see new parts of the world and even more importantly, the ability to see my loved ones grow and change. I know that many don’t understand what having Glaucoma means, that it can affect all kinds of different people of any age, and that there’s no cure. I’m not a doctor, but I think that if this disease gets more attention, a cure can be found. This is my selfish plug, partly because I would love there to be a well-tested cure so that I can keep the rest of my vision, but also because the world would be a better place with one less chronic illness out there.

Advertisements

Under Pressure

To you, just another 80’s lyric, but to those of us who live with glaucoma, living under pressure is a daily reality. It seems crazy to people who don’t live with it, but for me, going to get my pressure checked is just another routine check-up. The only thing is that it’s way more stressful than that.

I have glaucoma. If you know of it already, you’re probabky wondering; isn’t that something that old people get? The answer most of tthe time is yes, but there are a few rare cases where people are born with the disease. Sometimes it’s passed down or historically characteristic for the family, but in my case, my parents simply happened to have the perfect combo of genes to make it happen. Needless to say, glaucoma has kind of always been my life, and the in many ways the life of my family. Though not life-threatening, my disease is sight-threatening and most of my life has been spent fighting it. Luckily, I’ve had a wonderful family support and been incredibly fortunate to have great medical care.  Not everyone is as blessed as I am.

As cared for as I was, I wasn’t diagnosed until age two and by then, a significant amount of damage had been done. I think the scariest part about glaucoma is that there are hardly any symptoms. You don’t feel pain or discomfort hardly ever, even when you eyes are being severely damaged. Glaucoma is one of the leading causes of blindness in the world. There is research looking for a cure, but unfortunately glaucoma is a tough disease to fight and 10% of those who receive care still end up losing their vision.

I feel like glaucoma is one of the lesser known eye conditions, and I know from experience it’s not easy to live with. This month is awareness month and I just kind of felt like this is the best way to spread awareness.

If you want more info or feel able to donate to research, you should visit this website.

Thanks for the read.  ❤