Livin’ with KC in the Caribbean
Keratoconus Experience
Welcome back, my people! If you’re new be sure to check out the earlier post, rumor says they’re pretty good. See for yourself.
Straight into it; I don’t know a lot of people within the Caribbean that have Keratoconus. Scratch that; I don’t know of anyone in the Caribbean who has it. Those that do have it I don’t know if they’ve experienced or are experiencing the same challenges I did/am. I’ve tried researching it, but as always nothing came up.
Sometimes I feel as though I am the only person in the Caribbean with Keratoconus. I wouldn’t wish KC on anyone, however, I must admit that it’ll be fun to have someone to vent with. We can sit in the Cafe and chat about how difficult it is to get the contact lenses product, complain about the moments when the DMV (contact lens remover) got stuck on the contact which almost led to us almost yanking out our eyeball. Sounds painful? Well, it is - gosh how I hate when that happens. This brings me to my first point:
Not knowing anyone in the region who has Keratoconus.
When I was younger, all I longed for was someone within my region who knew exactly what I was going through. There have been some attempts made to reach out to see if there’s anyone within my region who has it but never got the opportunity to find anyone. The truth of the matter is, no one wants to feel alone in a situation because you start questioning yourself and the position in which you’re in. Various thoughts cross your mind and momentarily one starts to question their sanity. I was guilty of that charge. So, I figured if I met someone who had Keratoconus it would’ve made the process less difficult.
Keratoconus worldwide is a rare disease. In my opinion, if you have the opportunity to reach out to see if anyone within your region (USA, UK, European Union etc.), you should do it. It may seem awkward initiating it, but the meet up will be worth it. Try not to worry about the age difference, I don’t think that truly matters. It’s more about having that face to face contact with someone who knows your daily struggles.
2. The accessibility to RGP contact products.
All KC’ers know of the endless contact products we need to maintain and be able to use our lenses on a daily basis. It’s not just one all-purpose solution and a contact lens case; there’s the saline, the conditioning, cleaning, lubricating solution, the tools… omg! The list goes on. There are so many products involved I had to make a separate post just for that.
Unfortunately, it’s difficult to get those products on the islands. In St.Vincent, I can only get one product. When I was living in Barbados; I was able to get 50% of the products, but they were at different outlets. When I was in Trinidad I got two of the products, but I had to travel far and beyond at two different locations to obtain them.
This obviously added a tremendous amount of stress, because it made me uneasy because if I ran out of products it meant I couldn’t wear my lenses. The pharmacies only catered for soft contact lenses, which bothered me because again we are back to “I am going to cater for those that are common.” This leaves the others like myself in a messed up position.
All I am saying is that no one should have to worry about a. The Opthomogolist / Optometrist not knowing about your situation b. The pharmacy not having some of the products.
How do I get my products? Luckily my mother has a US mailbox so, I usually order the products every two months, it’s shipped to the mailbox and then sent down via AmeriJet which I then have to pay additional fees. Other cases, when I do travel to the US I would either have a field day at CVS or Walgreens and pack in my check-in or I would order them on Amazon Prime to get shipped to the hotel (this way is normally the cheapest).
For those of you who do not have to worry about these things, you are lucky, So, please don’t take that for granted.
3. Opthamologist / Optometrist.
I’m not going to go too in-depth with this topic because I have outlined my journey with some of the doctors within my previous Contact Journey posts.
What I will add however, there are some honest doctors who aren’t afraid to admit that they don’t have too much knowledge on a particular condition; those I respect. On the other hand, there are some doctors who don’t know that much about a particular disease, yet their prideful to admit this. So what do they do? They treat you the same way they’ll treat a patient who has a more common disease; those types of doctor I don’t care for. It may sound bitchy, but after my experience, I just don’t care for them.
One thing I would say to the prideful Ophthalmologist / Optometrist?
Be honest from the jump; either you’re able to help the patient or not.
A bonus tip:
Dear doctor, start acting like you give a shit about the patient - genuinely care for them! This isn’t just for Caribbean doctors, but worldwide. There shouldn’t be some doctors who care and then those who just care about the “coins.” All doctors should care, even if you have to pretend, just care! Please!
Up Next: “Dating and Keratoconus”
Stay Safe Luvs
