Most people, when they go to an eye doctor, they see an Optometrist. I've been going to the same eye practice for a long time. My first eye doctor when I was seven was Dr. Lewis. We stayed with him at when he founded his "new" practice in 1997. Dr. Lewis was one of those great old time doctors who really knew his patients. He was super excited when I went back to school, and even more excited that I was studying political science. He was so encouraging to me and believed that more girls needed to study and enter politics. My usual doc these days is Dr. H, who I started seeing when Dr. Lewis reduced his hours (and finally retired a few years back) and he is great. Dr. H was actually listed as the "Best Eye Doctor" on one of the Best of Buffalo lists a few years back. He is an optometrist. In the United States, they are Doctors of Optometry (O.D.). Optometrists are primary care doctors for eye care. To obtain an O.D., you do four years of undergrad, plus four years of Optometry school plus an optional year of residency.
After you see the Optometrist, if you need glasses, you go to an Optician. Mine is named Dennis and he's the best. He's known my family for my entire life and he's built every pair of glasses I've owned, except for one. That one pair was a cheap one from Sterling Optical when I needed quick glasses because my vision shifted a lot very quickly due to my uveitis.
Because I have uveitis, I also see an Ophthalmologist. Mine is through the same practice as my Optometrist. Ophthalmologists are physicians who specialize in eye care, so they hold an M.D. They are trained to manage complicated eye diseases and surgery. To obtain an eye M.D., you do four years of undergrad, four years of medical school, three years of ophthalmology training (residency) and an optional year of specialty training (fellowship). Dr. M is my ophthalmologist. He first diagnosed me in 2009 and treated my uveitis for the first few years, until it was clear I needed more. When I'm not having a uveitis flare, I still see Dr. H, mostly because he thankfully still works out of the office that's on a bus route instead of in Williamsville.
Sometimes, Ophthalmologists specialize in a particular area of the eye, such as the retina or cornea. Because my uveitis is so bad, I also see a Retina Specialist. My first Specialist was through a a practice that had a poor standard of care for conditions like uveitis. Taking a week to schedule for appointments for a uveitis flare was irresponsible on their part so I stopped going there. For reference, my other doctors have seen me outside of business hours to get me in the day I start a flare because it's serious stuff! So, I was referred to Dr. J.
I've been seeing Dr. J for my eyes for the past 5 years. He has done a lot to help my vision. He helped convince me it was time to start on a biologic medicine to treat my ulcerative colitis, since my colon was affecting my eyes so greatly. He's the doctor who administers the shots in my eyeballs when the inflammation gets bad and I'm not sure I would trust anyone else with eye shots. I have seen him 12 times in the last year. It's kind of ridiculous how often I go to the eye doctor.
I also saw another eye doctor, an Oculoplastic surgeon, who is an opthalmologist who is trained in ophthalmic plastic and reconstructive surgery. I had a severe boil on my eyelid in 2015. Boils were one of the side effects I had from Humira that I don't really talk about much. My dad was able to lance most of them for me. One of the benefits of having medically trained parents (he was a hospital corpsman in the Navy) is that sometimes you can save on the copay. The boils were mostly on my neck, back and shoulders. The one on my eyelid required more delicacy. The doctor I saw, Dr. S, did a great job and I barely even have a scar.
So, I had my 12th follow up uveitis appointment since last September with Dr. J. My cataracts have grown. A side effect of the steroids that save my vision is growth of a cataract. My type of cataract is the type that looks like Vaseline was rubbed on the inside of my lens. It causes my vision to be blurry and causes trouble with double vision in changing light conditions, for example walking from outside to inside a darkened room, or walking from inside to outside on a sunny day. I have trouble reading off the computer at times because of my double vision. I have trouble in night conditions because lights have halos around them. I also have synchiae, which is when the inside of your iris gets stuck to the lens, which is caused by the inflammation and scar tissue. If you look at my pupil, you can see that it's kind of a weird shape. The cataract is also quite visible in my right eye, especially if you look at me while my eyes are dilated, it looks cloudy. It's a common type of cataract that a dog gets, so if you can the way older dogs' eyes often look, that's the way my eye is heading. Who needs cat eye glasses when you have dog eyes?
Thursday, I went to see Dr. M. The cataracts are likely what is preventing my vision from being corrected to 20/20 vision with lenses. My severe myopia (nearsightedness) is too bad for lenses to actually be able to correct. When I talk about my vision lately, I'm giving my vision with my glasses on. My vision is at 2/30 in one eye and 20/50 in the other, with glasses on. Without my glasses, I can't even read the Big E on the chart. Because my eyes are not correctable to 20/20 by lenses, I am now visually impaired (I've technically been that since last September since my eyes have not been corrected by my lenses since then). New lenses can not correct this. We had to talk about my options.
I know that there are plenty of blind and visually impaired people in the world who live fulfilling, normal lives. I know that my vision loss is minor in comparison. I know that I shouldn't complain too much. But it's hard to accept. I haven't been able to see properly for a long time, over a year. I'm so sick of it. I can't read books for longer than about 15 minutes without a headache. I can't read the menu across the coffee counter or read street signs or subtitles on the tv. I can't do a lot of my historical research because looking at microfilm is simply not an option right now. I want to see again. I want my life back. It was awful during the refraction exam, which is the usual part of what people think of as the eye exam if they have glasses. The technician kept asking me "1 or 2" and both were super blurry. I started crying, which then of course makes your vision more blurry. Even the clearest they could get my eyes was still super blurry. I've cried a lot since then too.
I know cataract surgery is normally pretty minor. But it's a different case for me and my eye struggles. If I have surgery to remove the cataracts, it can cause chronic inflammation. I already have chronic inflammation. We'd try to nip it in the bud by doing a steroid injection two weeks before the surgery and loading my eyes with steroid eye drops before and after the surgery. We'd have to monitor things closely. There is a risk inflammation could get out of control and I could lose my eye. Also, steroids can impair wound healing. Methotrexate can adversely affect wound healing. Simponi can delay wound healing. Slicing the eye open causes a wound. I had three wounds from my surgery last October. One is still open now. It still bleeds. Almost a year of bleeding. What if my eye doesn't heal and I have a little flappy flap flopping around in my eye?
With cataract surgery, you also have to decide what focal point you want your new acrylic lens to be. I could chose to see up close. I could choose to see far away. It's so hard to decide. I want to see up close, to be able to read my maps and my books, right? I don't mind glasses, I've worn them since I was 6 or 7, so they're basically a part of my face by now. I wore contacts for 3 or 4 years, until I was diagnosed with uveitis. Because of my eye problems, I'm no longer allowed to use contact lenses (also can't wear mascara or eyeliner) because there's a risk of infections and other complications. But if I could get rid of glasses, should I? So many people would jump at the opportunity to be rid of their glasses. That's why things like Lasik are so popular. I'll never be eligible for Lasik because of my eye conditions.
I'm terrified of what the next few weeks/months could be.
On top of all this, we're still not sure the new medicine (the Simponi) is working for my colon...its too soon to tell. My eyeballs are taking priority. All of this is caused by my bum colon. Ulcerative colitis is so much more than just a pooping/bathroom disease. Sometimes I wish it were worse in my colon...it'd be so much easier to just have one complication, to just have one disease to worry about, one doctor to go to. Instead, I got the bathroom part with all this other stuff too.
Please don't offer me advice on this. Don't tell me about how simple your cataract surgery was. Mine is not simple. Don't suggest I get a second opinion. I have enough. My eye doctors are working together on this. My eye doctors who I have trusted the care of my eyes for the entire almost decade I've been dealing with this. I have seen other doctors, and always fallen back to the ones with the answers. I've weighed my options back and forth and back and forth. It has to happen. I'm too scared to lose my sight. A glass eye could be a cool party trick though.
