Going Blind

I’m going blind.
Not the “my eyes are bad and getting worse with age and I’m blind” variety or the “I woke up and had difficulty seeing so I’m being dramatic” variety.
It’s the “I knew I could lose my site as a result of graft vs. host disease post transplant” feeling.
It is terrifying.
I think it is made worse that I knowingly, willingly, and readily went to transplant with the knowledge it was a side effect.
I said okay to losing my eyesight to stay alive.
I said okay to any state between health and death actually, just some side effects are more common than others.
I’m sad. I want to feel bad for myself. I do feel bad for myself, but I won’t give myself permission. I knew what I was doing to myself.
I woke up one Monday, weeks ago, feeling sick and eyes hurting.
I called my providers and said I had conjunctivitis.
I really wanted to have conjunctivitis.
I do have conjunctivitis.
It just happens to be because of graft vs. host disease.
Now that I’m recovering from the para influenza and the subsequent bacterial infection, I am not feeling better.
I’m feeling worse.
Now I know which symptoms are from my virus and bacterial infection and which ones are from my chronic graft vs. host disease.
This sucks.
These effects could be lifelong.
My eyes are definitely the primary site of attack.
By attack I mean my new immune system does not recognize my eyes. The immune system, who I have named Simone, is trying to do its job and get rid of invaders like foreign materials, bacteria, viruses, and immature, rapidly replicating cells.
Simone is working hard.
She just doesn’t recognize my eyes or the lining in my mouth or my skin so she’s trying to kill them off.
On days she misbehaves, I call her Mona. Actually, I call us Mona.
I know I like this girl.
But Simone needs to love me on her bad days and stop being a mona.
I thought I would research what was available as far as treatment options for the eye pain since drops all the time isn’t helping the blurred vision in my right eye.
Then I wished I’d never looked.
The answer: steroids, maybe, could help.
Let me warn you, don’t look if you don’t want the answer.
Ignorance is bliss.
Now, I didn’t think it was possible, but I’m more depressed.
This is almost as bad as when I read Dr. Alyea’s research and realized he had specifically studied patients who had received allogenic transplants with C locus mismatches and determined a 30% survival rate.
WTF!!
Sloan and Kettering said I had a 50% chance with the mismatch.
Damn it all.
And since there is nothing that can be done to go back in time, I just should stop reading the research.
I can’t. I keep clinging to the hope that the truth will set me free. I intellectualize as my primary defense mechanism.
I do have an undying faith that the cure exists. I just need to find it.
I keep looking and finding bad news!
It’s out there, and I’m going to find it. First, I’m going to call Dr. A to make sure I can see it.
Please, take a breath and breathe a sigh of relief, I’m getting an appointment at Mass. Eye and Ear with some superstar who has seen this before.
I am getting the best care available.
I just hope it’s enough.