if you are lucky — blessed — you have someone monitoring your health as best as they can. if you’re falling off in any way, they’re there to pick you back up and remind you, “There’s still living to do.”
I now know the importance of keeping my eyes shielded for as long as I can. wearing scleral contacts for at least ten hours per day has helped my left eye, however, my right eye is progressing. according to my optometrist, I’m still in a range she thinks is “gradual” and nothing to be concerned about surgically, just yet.
she agrees with me that we should allow the additional six months and reassess in November to see where I stand. will my sight continue to betray me or will it slow its pace in progression and stave off surgical procedures for a few years or more?
I guess we’ll have to wait and see.
she also broke down Corneal Collagen Cross-linking to me in a way that didn’t terrify me or cause me to fear attending anymore ophthalmology follow-up appointments. she smiled gingerly and said, “I hate to say this, but most surgeons are trained to give you the worst-case scenario, and then I have to . . . clean up the mess.”
I listened to her as each step was explained, reiterated, and filtered to my understanding, and I breathed a sigh of relief. if this procedure is needed by the end of the year or later, I feel less worried about the possibility of having it performed.
when one’s vision is steadily running in the opposite direction of the sighted, what does one do? hope. pray. follow all necessary precautions. pray some more. purchase all the expensive items necessary for the care and maintenance of the $3,500.00 each, priced lenses.
Can’t let these go to waste, right?
and as I continue to lose my sight in one eye, it is strengthening in the other. what can this mean? what does this mean? is there even any meaning to it?
my optometrist is happy with my vision as it stands currently. I could see what I needed to see and people, places, and things are still sharper in my line of sight. it’s a small thing but a big thing, too.
follow-up on cornea scarring and hazing, and good news to that; no new scarring. no new hazing.
my corneas have gotten steeper in each eye, even after wearing the recommended scleral contacts since last November.
my vision is running away from me, and I am chasing after it trying to pull it back to me. trying to love it again; harder & heavier.
it is doing what it wants to do and my ophthalmologist wants to pursue a procedure called “Collagen Cross-linking“ and I do not have any more passion to give this man of expertise regarding my care.
I nod and listen, and I understand everything he says, yet I tell him, “I would much rather continue to wear my scleral contacts until November of this year. That would be one full year. Let’s reassess at that time.”
Hesitant, he leans toward my line of thinking, and we schedule another appointment.
I toggle between him and my optometrist; they work on my eye care in-tandem. I will see her in May. I hope she’ll have better news for me, and even if she doesn’t, I have given this to God.
I will not stress over it. I will not lend it my heart. I will not spiral down into unshakeable pity.
keratoconus, you will not, and I put emphasis on “NOT” steal my joy. You can’t have it.
**The visit on Thursday, April 13, 2023, with the ophthalmologist did not provide the details I thought it would. The corneas are getting steeper which means that eventually, my vision could keep getting even more blurry.
The ophthalmologist recommended a procedure called (Corneal) Collagen Cross-linking which would be performed out at Duke University in Durham, and I pretty much pumped the brakes on that idea and informed him that I would much rather continue to wear my scleral contacts until at least the middle of this November which would be a full year.
We are going to reassess on November 21st of this year and I will meet with his colleague at that time, but I also have an appointment with my optometrist in May, so I am going to get her opinion on this, too. So that’s where we are now. I was not released from his care due to these recent changes.
This is for God to handle. My gut started speaking to me as soon as my ophthalmologist began explaining everything about the next steps. Those are NOT my next steps. We’ll see what May reveals & then what November of this year further reveals before I begin letting surgeons/specialists/doctors surgically enhance (or botch up) my vision.
**I am sharing this here as well. In about another week, I will do a post for WordPress announcing my two week break from my participation here. I always like to give a head’s up to you guys as you’re not just a great community here; you’ve become family too.
A much-needed break from ACG
On February 19, 2021, I was diagnosed with keratoconus. In short, the corneas are bulging forward; shifting and moving away from my eyes. When I first noticed the dramatic change in my vision, I thought surely it had to be aging as various body parts tend to depreciate as one gets older. However, I was sadly mistaken.
The glare, sensitivity to light, misshaped corneas, and astigmatism all revealed it was definitely something more. I sat in the patient chair directly across from my optometrist as she explained this new thing heaved upon me.
She said “keratoconus” as if it was second-nature to her. I asked her to repeat it. And then again. After her repetition of the word, I asked her to please write it down. She spoke and as she did, I sat there dumbfounded by the words that tumbled out of her mouth. What is this thing and why am I its new host?
Noting my “lazy eye,” she inquired if I had ever worn an eye patch as a child. I am sure the look that shadowed my face spoke louder than I ever could. “No, I never did.” It was all I could say. I was still practicing (in my head) this new word I’d never heard. Keratoconus. Keratoconus. Keratoconus.
“Please, if you don’t mind, can you repeat it one more time?”
“I’m referring you to the specialists at Duke. They will examine you, determine the level of damage, and set a course for treatment.”
“Is this curable? What am I looking at as a worst-case scenario?”
I had so many questions. Referral to Duke? Treatment? Level of damage?
I’ve been wearing glasses since I was twelve years old — contacts since I was seventeen. Not once did I ever truly envision the possibility of losing my sight entirely or requiring some form of surgery to set my vision back to a suitable standard. I never thought I’d need contacts designed especially for corneal deficiencies that cost an arm and a leg.
None of this ever crossed my mind.
I have new glasses now. New contacts. And with both, my sight is a bit better, but there’s still a glare and some things are still blurry. But this is due to cornea damage. More about this and whatever treatment designed for my case will be discussed on Thursday, April 22, 2021, during my consultation at the Duke Eye Center.
I have already begun implementing methods to help salvage my sight: reduced my daily screentime, purchased blue light glasses, purchased new glasses and contacts (as mentioned above), and now . . . I will be taking much-needed breaks from a few obligations to help limit my time in front of a computer screen or laptop.
Effective March 31, 2021, I will temporarily pause publishing in A Cornered Gurl. I will not be accepting any new writers or new submissions at that time. The tentative date of my return to duties in this publication is Sunday, April 25, 2021. If I feel, at that time, that I do not want to move forward with continuing to host the publication, I will make an announcement about that fact.
From March 31, 2021, until April 25, 2021, I am asking all current writers to not submit any new work to ACG. If a draft is received, it will be sent back to you referencing this letter. I am asking any writers interested in A Cornered Gurl to please not send any requests to become a writer via email. If received, it will be sent back to you referencing this letter.
I want to move through this new phase of my life continuing to learn more about this condition and press forward with any tools I may need to help me save my sight. I truly hope you understand this.
You will still see me on Medium as I also edit for P.S. I Love You and I will have writing published from time to time but I will not be nearly as active.
I want to say thank you to each of you who took interest in this publication and decided to support it. Without you, ACG would not be the publication it is — a safe and creative space for writers unafraid to break out of the box. You have my complete and total adoration.
I wish you kindness, understanding, love, peace, and a hell of a lot of writing and creativity.
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