Learn about Jill's experience with dry and wet macular degeneration.
I have recently been told that I have wet macular degeneration as well as dry macular degeneration. Nobody seemed to focus, for a very long time, on me having dry macular degeneration. All the doctors had always focused on the wet, so it was very surprising when one organization said, no, you actually have a combination of wet and dry macular degeneration.
How long have you been living with macular degeneration?
I was originally diagnosed with wet macular degeneration November the 11th of 2014. Nobody ever talked to me about dry AMD until I went to the National Eye Institute in Bethesda, Maryland. I've been around. I think that was closer to 2017. He was the first physician that said to me, no, actually you have both wet macular degeneration and dry macular degeneration.
How did you feel when you were diagnosed?
I was an emergency room nurse in the city of Philadelphia, high impact, high trauma. I went to document on a patient's chart and couldn't see the sentence that I had typed. You get a sinking gut feeling like what is going on. I had no idea what was going on with me. It was a short period of time from that day to when that wonderful November the 11th came, when the doctor walked in and explained to me what was going on. He didn't use medical terms. He said I had blood behind my eyes and a big scar and they're going to give me needles in my eyes to see if they can get my vision back. Well, I felt like my world was collapsing around me. Nursing was a second career for me. I raised my children and then went back to school to become a nurse. I loved what I did, loved where I did it. I just felt like my whole life was crashing around me.
What are the challenges you face with wet and dry macular degeneration?
Being a nurse, I was always the helper, I was always helping everybody else. Now I've had to learn to ask for help and that's been very difficult for me. I've made friends from my gym. Certain times of the year, I need a ride. Somebody must come and get me and then get me home, even though it's only around the corner. But in the dark, I can't get there myself, so I've learned to ask for help when I need it. I make no plans for nighttime. A few years back, my husband bought me the new Apple watch, because number one I could see it and set it up to tell me what time sundown is. I know what time the satellite says sundown is, so I always know that 15 minutes before that I have to be at home.
I currently have six grandchildren, three girls and three boys. This is going to get rough. I hope to never get to the point that I can't see their beautiful faces. If I'm standing in one room of my house and they're in another, I have a straight through from my kitchen to my family room, their playroom, I can't see their faces when they're that far away. I'll have to call their name, then I can see their bodies. I never want to; I'm hoping that I'll never get to the point of not being able to see my grandchildren's faces when I give them a big hug.
How have you been managing your vision care over the years?
At this point in time between month-to-month doctor's visits, when there's a drastic change, I make a note of it in my phone so we can discuss it with the doctor. I’ve become more conscious of it. I'm very aware of different things that go on with my vision. I feel that to survive this, you have to learn to adjust to it and you have to learn what you have to do to accomplish the things that you want to safely accomplish.
How has the COVID-19 pandemic changed your vision care?
Fortunately, the doctor's office visits were not interrupted for injection patients. Where it did interfere, the doctor I was going to when this started, unfortunately, became very ill and I had to switch doctors. The one office was a very comforting family type atmosphere and they continued to allow my husband to be with me throughout the appointment. When I had to change offices, it's more of a larger institution, my husband can get me up to the office to make sure that I find it, because the place is huge, and then they ask him to leave. That's very hard, I've gotten used to it, but it's very hard for him. He is my sole support. It's very difficult for him, because he likes to hear what the doctor has to say, because he says and I'm sure it's true, even from the professional standpoint, I only hear half of what the doctor says. If something negative comes out or if there's something that has deteriorated, as soon as I hear that I stop listening. That's what I focus on and that's very common in patients.
I usually need to get one of the technicians to help me with my phone, if I don't remember to bring my husband up before the doctor does the injection. Then I send him a verbal message to come get me. I'm now numb and dilated so I can see nothing. I've walked into walls. I walked into a door from one of the locations, because I didn't know it was there. Now, I literally don't move until one of the technicians can take me out to the checkout booth. Then I send my husband the verbal message to come get me and within a minute or two he gets up to the office. He has to schedule my next appointment because I can't see the phone to do it. They kind of forget that I'm by myself, they've just given me an injection, so I'm numbed, I'm dilated, and I have no vision in the other eye. They forget that I can't do these things by myself. I do find that kind of frustrating, so I look for my husband to one day be able to be back with me, so I don't feel so debilitated.
What is one thing you want people to understand about macular degeneration?
I think the most important thing for other people in my position to realize, and that includes families, nobody can understand what a person dealing with macular degeneration is experiencing, because, I think, everybody experiences it differently, depending on the degree of the disease, the damage from the disease or just the way you're afflicted by it. You have to be willing to explain to people what you can do, what you can't do, and people have to be willing and understand that they have to let you do what you can safely do. It's wonderful for people to want to always be there to help you and to keep you safe, but as long as you're safe, do everything you possibly can, because it's the way you learn to adjust to the changes and differences that are going to occur in your life.
This content was last updated on: April 20, 2021