Living with keratoconus and the treatment I’ve sought.
I had my follow-up visit with the Duke Eye Center for my recent diagnosis of keratoconus on Friday, October 22, 2021. The news my ophthalmologist/corneal specialist shared was good. There is no scarring and no significant change in my eyes — no additional con-caving or coning of my corneas. This is good for multiple reasons, but I’ll just mention two of them. 1. Negativeprogression of the corneas is minimal. 2.It keeps me out of the tunnel with surgery (a cornea transplant for both eyes) as the light at the end. If you remember, I mentioned not wanting to even think about surgery, so I am ecstatic about this recent news.
My ophthalmologist wanted the same tests done as my previous visit, but two more had been recommended as well. One process required a numbing agent for my eyes. The nurse’s assignment was to assess the pressure of each eye. She announced her need to get near me in order to do this — as she rolled on her stool closer to me, my breathing halted. I am not a person who cares for people in my personal space, however; I recognize sometimes; it has to take place in certain situations. As she dropped the numbing agent in the first eye, I stopped breathing and she held her hand up to go to the other eye and said, “I need you to breathe, Tre. This doesn’t work if you don’t breathe.”
I instantly exhaled and inhaled as I normally would. I apologized — informing her it was simply my body’s natural defense and reaction to someone getting so close. She smiled and said, “It’s absolutely normal and expected, but you still have to breathe.” And breathe, I did. After the numbing agent had been applied, she said softly, “Blink. Blink. Blink.” I did as instructed. She announced coming closer to me again and this time, there was a device in her hand (it looked a lot like this, I failed to ask what it was and I beat myself up for it when I left the building) and she rubbed the tip of the device on my eyeball rotating it in small circles. She did the same thing for the other eye.
The look on my face caused her to giggle. She said, “Wasn’t expecting that, were you?” I most certainly was not! To have someone rub some type of device which captures the pressure of your eyes on your actual eyeballs was clearly not on my list of to-dos that morning when I awakened. Afterward, I saw little black dots for a few moments. It took a few more minutes before I could see clearly again without the little black dots and swirlies, and then we were off to yet another room where I would wait for the ophthalmologist.
He was pleased with the numbers, and images gathered from the testing. The reassurance I received from him about my current status eased my nervousness and worry as well. I am in a good place to still be a candidate for scleral contacts, however, no surgery is needed at this time. The scleral contacts are supposed to help sharpen the blurry images and my need to squint (natural reaction) to try to see small writing or images far away. To have a sharper vision will be a godsend and I await it like the day awaits nightfall.
Taking into consideration the fact I am severely near-sighted, have astigmatism in both eyes, and have also been slapped with keratoconus, and my vision has not changed drastically in the last six months, was paramount. The news was the best I had received all morning, and I could not contain my elation. Before leaving, they had advised me to continue with the changes I have made, keep up the Pataday regimen, and take as much time as I can away from devoting my eyes to the blue light of electronic devices.
Listen, I appreciate the $5.00 off coupon the center gives for the Pataday eye drops. That mess is expensive for a teeny tiny bottle. But, I digress. It is necessary, and it works.
As it stands, I have an appointment with my optometrist on Friday, February 25, 2022, for my annual eye exam and the fitting of the scleral contacts. I will follow up with my ophthalmologist/corneal specialist on Friday, May 20, 2022. He wants me to have at least a few months under my belt using the scleral contacts before coming back for additional testing. The flip in visits between the two of these doctors for my eyes will take place for as long as my ophthalmologist deems necessary. Keratoconus is lifelong and currently, there is no cure (outside of surgical procedures), so I’d better get rather comfortable with the entire process of it all.
I am thankful for decent vision insurance — I could not afford this level of care without it. By stating this, I am not flaunting the value of my healthcare coverage, but the truthfulness of the aspect to the level of care of which I am receiving. The care is not an inexpensive one and my pockets do not run deep. Take care of your eyes, beautiful people.
the work comes — it goes every call is torture to the bones. we communicate with vigor, yet with ease. patients want to know listeners can schedule their appointments and offer empathy too.
a doctor’s office landed in my teammate’s queue — their issue crept in without cause. a 3-month-old showing symptoms of a virus meant for adults and the elders in the early stages, but really did they know who it would attack and who it would leave alone?
when we start scanning babies with machinery doling out radiation because their lungs are about to collapse, the world is truly at its end. I shout at the screen housing messaging tools and the software we need to scan through thousands of accounts.
it doesn’t shout back.
I can tell my days are beginning to blend — Monday is Friday. Tuesday is Thursday. I don’t know what weekends are anymore. and the lovers of this world continue on, sampling pain in little festive bags — afraid to share their happiness.
who will appreciate it?
“I am spent,” I say this to my mom as she breathes on the receiving end of the call. she’s breathing . . . breathing. how often have we taken this for granted? breathing . . . she hears me — pauses for effect. she tells me she is afraid to go outside and I understand.
I spend many of my days arguing with God — telling him how I really feel. he knows. I know he knows. but, I tell him anyway. I want to wade through waters less choppy and with each passing moment, the hardness comes and my face has bruises I no longer hide.
And how I’ve learned to say “See You Later” instead
I have learned to say “See You Later” when I am leaving people or a place I love. It’s more accurate than “Goodbye.” Goodbye is final — an ending. Everything in life may not always require an ending, especially when bonds and love exist for the person/people/things. Friday, November 06, 2020, was my last day at my previous job. It was full of tearful expressions, gifts, social-distance hugs, and well-wishes. I have stated this once and I will state it again — I am not (have not) leaving people I hate, I left people I love. It is hard. It has been hard. But ultimately, this decision is still the best one for me.
This week, I have had patients cry, want to hug me, and talk to me longer than they usually do as they learned of my decision to transition to our Central Scheduling Unit. Patients have brought in gifts, written up remarkable cards for me to hand to my supervisor, and shared their respect and admiration for me. The one phrase I have heard more than I can count this week was, “Thank you for making us feel safe.” I will miss many of them and others I cannot be happier to get away from — to possibly never see again in a professional setting.
I have learned to say “See You Later” when I am leaving people or a place I love. It’s more accurate than “Goodbye.” Goodbye is final — an ending.
The law firm above our facility consists of a team of one man and three women. Each of the women I have grown to care for and respect. The three of them got together to give me a card with such heartfelt notes written in it that drew tears from my eyes as I read them. As Ms. Leslie approached me and readied her speech, I stood there — fully in tune with her words and thanked her profusely for such a kind gesture. She made sure I knew how loved I was and how much my presence meant to them. She asked if I would train my replacement and I informed her I would.
So, this past week was made up of me training my replacement and getting her ready for the week ahead. I was thankful we did not have as much traffic as we usually get in the facility so it made training her much easier, but we had several instances occur of which she will need to be aware and ready to tackle when they take place with no one else around to assist her. After our third day of training, her question to me was, “Did you do this by yourself?” and I informed her I did. Her response to that was, “This is not a job for one person.” I agreed with her.
The one phrase I have heard more than I can count this week was, “Thank you for making us feel safe.”
Some days I would screen over two hundred people for Coronavirus, COVID-19 symptoms, and out of that two hundred, I would probably have to turn away five to ten per day for having symptoms or refusing to wear face coverings/masks. The job is taxing, and on my best days, it completely exhausted me. I am sure it had to be pure adrenaline and the high-energy of my nature that kept me afloat.
My replacement is a bubbly middle-aged woman who has a cheerful disposition and a need to be around people again. She is transitioning from a remote position back to a clinical setting. I could tell this past week that perhaps she may have made the wrong decision. In the middle of a global pandemic and at one of the busiest facilities in the area, trying to get as much information as I could transfer from my brain to hers felt like an act of futility. The job itself is tough, but having to train someone in the midst of the job made it even tougher.
My most important piece of advice to her was, “Find a groove that works for you. This foyer is your baby. You will have to own it or it will own you.” I could also feel her level of discomfort too as some of my coworkers came out to the foyer to bid me farewell in front of her. They were emotional, they kept asking me to think it over and to not leave, and others wished me the best but let it be known they were sad I stuck with my decision.
Regardless of what I did to get them to curb the conversation for a later time, they went on. I am a fan of giving people the floor to express themselves, but I am also a person who is constantly connected to the feelings of others. I wanted this transition to be smooth for the new Screener and not one filled with anxiety of having to step into the shoes of someone else before her.
The job is taxing, and on my best days, it completely exhausted me. I am sure it had to be pure adrenaline and the high-energy of my nature that kept me afloat.
We made it through the week with her trained as much as anyone could be trained for a position such as this — questions had been asked and answered and she will have many more; I am sure. They will not be for me. I left the entrance space of our facility in her hands. I hope she takes care of it.
I worked six hours that day, knowing in advance I would need to leave earlier than my normal to rest up for the new job next week. Prior to my leaving, I went to each modality to see their faces and spread some love before I turned in my keys. The blessings that flowed from the mouths of these beautiful people reminded me of why this decision is such a hard one. The plant you see above as the cover image is just one of the many gifts given to me shortly before I exited the building. I instantly fell in love with it.
One of my coworkers, the one in which I am closest to, grabbed me, and hugged me, and I felt her body shake a little and I said three times, “Don’t you dare cry,” and she didn’t. I said to her, “This is not goodbye for us — it’s not. This is, see you later.” And it will be.
I have learned the difference between the two. You say goodbye to those people or places you never intend to see again. Goodbye isn’t reserved for the team I had the pleasure of spending nearly three years with — no, goodbye has no place regarding them.
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