Contact Lens Journey (Part III)
Keratoconus & Contact Lenses Experience (Part 3)
Ever since my journey with Keratoconus commenced, all I could long for was a doctor - one doctor who would just give a shit. I don’t want to go too in-depth of the other doctors I’ve met after Doctor #6. It’ll be too drawn out and boring. At the same time, I am going to briefly summarize each encounter, so that you can either be aware of what type of doctors out there and others can understand what a lot of us have gone/going through.
After doctor #6 I took matters into my own hands and tried to figure shit things out on my own. Only when it came to the contact lenses. If there were any concerns about my eye I still went to doctor #5. Mainly because of his assistant and I need prescribed medication, but mainly the hottie. C’mon, it doesn’t hurt to have eye candy to comfort you when going through a rough time.
This “matters into my own hand,” thing only lasted a short time. Doctor #5 had demanded that I not wear my contact lenses for a while because my eyes just looked weak. This meant having to not work for a while. One day, I was making lunch and the kitchen caught on fire. Before, you guys say I can’t cook, I can - kinda - a little bit, that’s beside the point. One of the burners on the stovetop overheat and the pan caught on fire. It was one of the scariest moments of my life. It definitely surpassed the moment when my contacts acted up (began burning my eyes) while crossing the road, and vehicles passing by. Up to this day, I have no idea how the flames went out - none. I thought I was going to die on the top floor of the apartment building.
Ideally, I just wanted to be able to afford to travel to Miami to see the doctors, but I didn’t want to burden my parents. I was trying to be an independent black woman. So, although I didn’t want to get my hopes up trusting another local doctor, I had no other choice.
I did more research and I ended up finding someone. Lovely woman and she owned her business - this was great news for me because the likelihood of her fly to another country to work for someone else was slim to none [check]. This doctor changed my life, well made rethink my life, my journey. From the jump, she was completely honest that she wasn’t too comfortable dealing with advanced cases of KC, but maybe it was the desperation that laid beneath the surface of my eyes that made her want to help me. Three months after meeting her nothing went wrong, this was it, I thought. This was the break that I was longing for.
I went back to her just for a check-up, to be on the safe side that everything was good. How dare I got my hopes up that high?! While checking my left eye (the better one) I had huge blood vessels growing towards my Iris. She had never seen anything like it and she told me I needed at least a month without the contacts.
The darkness of my skin became almost grey. For years, every time something terrible happened, I thought to myself “this is the worst that could happen.” every other month it managed to prove me wrong.
As I was about to grab my bag and leave, she pulled her chair and sat in front of me,
“I know you want your life to be normal, but you until you start living like someone with keratoconus you wouldn’t be able to do so,” doctor #7 said.
“You’re pushing yourself, pushing eyes to do more than it can handle… Right now you’re able to live on your own, do some of the things just within a limited time frame each day,”
“So what are you saying, I should quit my job and let go of everything I worked hard for?” I replied, trying my best to fight the tear back.
“I can’t tell you what to do with your life, only can do that, I’m just saying that you need to start thinking longterm what’s best for your eyes and you….because if you continue like this you’ll have no other choice but to need someone to help you get around…” doctor #7 continued.
It was hard to hear, but it was what I needed to hear. I began a different path after our conversation along with numerous breakdowns. Just straying from the topic a little bit, those of you that are reading this and don’t have KC, but one of your loved ones has the disease; you have no idea how much pain they keep inside. They may let you see some of it, but just enough to not make you want to pity them.
The major problem is that hardly anyone took the disease seriously. Matter of fact, some people do not even consider it a disease. Now you those who have it and are having breakdowns look mental or being overdramatic. “Why are you crying so much Shakeila, it’s not like you have cancer!”
Constantly hearing that made me play it all down. Fuck it! I wasn’t dying, I could live a perfectly normal life… right?! I can just pop my lenses in and abra-fucking-Cadabra… problem-solve I’m superwoman. I can do it all. That’s what I thought. Then 7 years, countless infections, multiple blood vessels, and shitty frigging sight later, I learned that was a serious disease. It took losing most of my sight to actually start taking it seriously.
To be honest, it sucks! It sucks that I can’t go outside without my lenses and walk around. It sucks that I can’t run into the sea and go underwater. It sucks that I have to calculate the number of hours I have left to keep my contacts in. It sucks whenever I move to a new home I have to memorize everything; how many stairs, where the corners are, the switches, plates, everything. So, yeah I somewhat wish I didn’t listen to those people that told me that having keratoconus wasn’t that big of a deal. Although, it sucks this doesn’t mean that I have given up….and neither should you.
If you want to know what it’s like to have Keratoconus, instead of going on GOOGLE, ask someone with it. Join a support group to see what everyone says.
Back to my contact lens journey, Doctor #8 was one I met when I was living in Trinidad for a while. He was kind of a dick, did my fitting, told me they couldn’t order it until I paid for everything. So, I paid the guy. One month later, no new scleral lenses, two months became three then became a pissed Shakeila who got tired of hearing “next week” every time she called then became a Shakeila that wanted her money back. They didn’t even have the audacity to call once to say there was a delay. Let me give you a rundown of their bullshit excuses;
Two weeks after payment; “Oh, it just arrived that doctor just have to review them.”
One month after payment; “Shakeila, Shakeila oh yes your contact lenses are being manufacturers as we speak,”
Six weeks after payment: ”Your contact lenses are being shipped to use will be here in the next two weeks,”
Two months after payment: “It’s in Trinidad, but currently being held at the airport,”
Three months after payment: “Oh, the manufacturer said that they’re out of stock of that material.”
I was beyond annoyed. I couldn’t wear the contact lenses because my eyes were progressing and the lenses became too tight. Why couldn’t they just be honest with me? Why take me around the globe with that bag of bullshit.
That was my last straw with having doctors that just didn’t give a shit. I was over with it, and begged my parents for me to be able to travel to Miami to see the doctors there. The times that I was able to go there, they always made me feel safe and as though they truly cared.
I was thrilled to be back at Bascom Palmer, wasn't too thrilled to spend all that money, but I knew I was in good hands. I got back my old doctor who indicated to me that my left eye was just thick enough to do the Corneal Cross-Linking. I wasn’t mentally prepared to do that - I didn’t even know that was still an option. My eyes left eye felt super weak since I’m so dependent on that one so anything to help strengthen at least one of them I was all in for. That surgery is another story on its own, but long story short it was successful, my left eye felt stronger and I was able to meet this really lovely Russian doctor (doctor #9) who fitting me for new pair of scleral lenses.
Doctor #9 is not my current doctor, but she’s still a sweetheart with wizard powers. As at that moment, the lady took her time and made the best….. THE BEST fitted Scleral lens - contact lenses I had ever had in my life!!! It was the FIRST time I went a full year without any problems. Zero! Nada! Sadly upon my return she had moved on and my heart broke. I kinda went a little stalkerish and googled where she was and found her, but she was far and I had never been to that side of Florida. So, I found an alternative.
Doctor #10 hmmm… what an interesting being. The most I could say about this man was …. “WOW!” This isn’t the “WoW, I’m amazed by how talented this person is,” it was more on the “WOW! How is he still in the profession..” Oh my goodness.
There is so much I want to say, but I am going to keep it short. I’ll try my best to; Doctor #10 is a cool guy. My theory is that he knows about a lot of lenses except Scleral lenses. The thing is I met the doctor before. After the blood vessels growing towards the Iris fiasco, my father wanted me to be on the safe side so we went to do a check-up in Miami, and after meeting with the Opthomologist, I saw this doctor #10 to ensure that the Sclerals Lenses were still a good fit. He checked them out everything was good, and at that time he wasn’t doing a fitting for scleral lenses.
Fast forward to two years later, I figure “ouu he educated himself.” I thank the Lords that I am not blind after my visits with that guy. Where do I start?
The lenses burnt my eyes after an hour of wear, sometimes 30 minutes - all the time.
They got stuck in my eyes multiple times.
I hated taking them out because my eye felt like it was on F.I.R.E and then it became red.
Every time he rinsed the lenses he used the tap water, filled the bowl with Purilens then placed it directly into my eyes. **
** This part use to piss him off. I swore my eyes lids weren’t having it. No matter how much I stretched my eyelids apart for him the insert the contacts, they kept closing down.
I am certain I heard them screaming to me at a point, “Bitch! Didn’t you just see that mad man run that lens under that tap water are you mad!!” Eventually, they would get inserted and he always said they look fabulous. My eyes will be turning red and watering repeatedly and he would watch me and say “Perfect fit, I’ve never seen anything fit so well,”
For a moment I wondered if the pain was all in my head until I looked into the mirror and see how red my eyes were. A couple of weeks later, I found out that they had a contact lens specialist there who has decided to split between two of their branches. I felt like she was an angel sent from heaven to save me.
I made an appointment ASAP and when I finally got to meet her, she took a look at my eyes with the contact lenses doctor#10 gave me. There was a short pause.
“Are you sure you just got fitting with these lenses?” She asked.
“Yes,” I nervously replied.
“Please take those out and never put them back into your eyes,” She replied.
Apparently both of my contacts were too tight, and my cornea was pressing against the lenses. Luckily, I went and got my money back. He was pissed! Beyond pissed, but I didn’t care I knew something wasn’t right. I left his office went back and began my relationship with Doctor #11.
She did an amazing fit, gave me her e-mail and number at the end of it in case I run into any problems. I love her! I have a lot of fun with her, a lot of laughs, and my contacts now are bomb-ass. They’re fucking expensive ass lenses, according to doctor #11 it’s the Mercedes of lenses. I knew I was a high-class woman, unfortunately, I have a lower class bank account. LOL!
I hope you all found this helpful, I want to give you guys the name of my current doctor (the contact specialist,) but she’s mine and I want to keep her too myself! *pout*
Believe it or not, this three-part series is a short version of my experience. There was a lot I left out, to avoid it being too drawn out.
Stay safe Luvs! x
Next topic up will be *drumroll*.......................”Living with Advance Keratoconus.”
I somewhat touched on some of the points in this series, but I want to go more in-depth to help the difficulties I face.
