Recently I had the follow up specialist eye appointment I’d been simultaneously dreading and hoping for. I had waited three years in total to find out if I had premature Macular Degeneration.

Being an optimist, I decided I did not have it. I knew I had the genetic susceptability as when I got my DNA done years ago out of curiosity, in the health section it had told me I had genes from both parents for MD. I read the fine print and decided that only meant I had a greater risk, not a definitive certainty and I didn’t worry about it. But on a routine eye-check (I have terrible eyesight) an opthomoloist said I had blind spots, did a field test, and asked me to go to a specialist, thinking I had MD.

Consequently I went to many specialists, the first didn’t seem good, I did more investigating, I went to Houston and locally. They varied. Some told me I definitely had it. Some said no way. It was beyond frustrating.

Finally I found the best specialists I could and they both said the same thing: You can’t have it you are too young, but you have the signs of it, which means you will get it but you probably don’t have it now due to your age.

I didn’t think that answer was good enough. They told me the definitive would be a few years down the road, after they can compare the many details specialist inner eye photographs and pigment and tests.

I kept telling myself; Surely fate wouldn’t let me get MD at my age, given this would increase my risk of going blind because it’s a degenerative disease that can only be slowed not stopped, so if you develop it early in life, you have more time to go fully blind. And whilst you are not 100 percent blind, you cannot see: Faces, TV, Books, Computers, Phones, Driving, etc. So you might as well be.

After developing a form of Gastroparesis (Gastric Arrhythmia) from a virus in 2017, it felt like too much to have this news in 2018 so I initially ignored it. My eye-doc pointed out she had seen this in 2015 when I was even younger, but never before (I had been seeing her for YEARS) and nagged me to do something which eventually I did.

Waiting. Waiting. Waiting. I kept telling myself this year they would not see any changes, it wasn’t MD, maybe there were other reasons, or causes.

But they did see changes. And truth be told I could already tell because my left eye had gotten worse.

Without boring anyone with the details, they now categorically say I have MD and it is degenerating. At my age that gives me if I live to the average age of 80/85 so many decades for it to degenerate, it’s that which gives it the greatest likelihood of advancement and vision loss.

Literally, I couldn’t believe on top of the stomach issues, which have got so much better but are a life-long condition and plague me regularly despite my best most positive attempts to the contrary, and cause me to have to live a very different life to the one I had been living, ensuring I can hardly ever be as others, and go out and eat etc, that on top of that, I would also get MD?

In addition, my stomach issues have exacerbated or developed a new level of depression. I have always had low-grade depression which would sometimes worsen, overall I was high-functioning despite it, and only I knew what it had really done to my self-esteem etc. But since my stomach became bad, probably because the chemicals that impact your mind are created in the stomach, depression has been overwhelming at times and most days are a real struggle.

I don’t say this for a pity-fest. I’m just exhausted by it.

I didn’t think I’d get MD as well. But who am I kidding? Bad things can happen to everyone. And do. I’m not special.

There are things you can do for MD but essentially they stave off the inevitable, which is fine if you are say, 80 and die at 90 as you can maybe stave off 10 years. But if you are 40 years from 80 then what? How can you stave it off that long? People always say ‘oh don’t worry you will be the exception to the rule’ but so far that’s not been my experience of life.

The self-hate you feel when you are sick, is pretty intense.

I don’t want to, but I internalize the criticism of people who don’t like me and I blame myself for being sick.

Despite this, I continue to work as hard as ever. Little things like allergies, pelvic pain, aches and pains, etc, are relatively easy to deal with. I can go to the dentist and be told bad news, I can get told by my skin dr I am high risk for skin cancer etc, but those things are just less awful than an actual definitive diagnosis for going blind.

I’ve been trying to climb out of the pit. It isn’t happening yet but I know it will.

I know we always emphasize positivity and I am a positive person but sometimes it’s just really overwhelming. I think having a family can really help with that, and if you do not, you feel dislocated, and keep everything inside.

What helps is helping others, and being kind and decent. Boring sounding but so undervalued in this world. I also remind myself of all those who have it MUCH worse and some of them are so gracious with this, which I completely cannot understand but so admire. I want to be there for others even if I cannot be there for myself because I know much it helps others to have someone care.

I try.

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