How Do People With Low Vision…Deal With Injuries?

It all happened in the blink of an eye.  I was getting off the bus for a band performance, and didn’t notice there was a pothole right in front of the bus door.  The chaperone told me that I shouldn’t need help getting off the bus, even though I always receive assistance from a friend.  I walked down the first step, and then the second step.  Then, I missed the last step, tripped, and fell into a gravel pothole.  I heard a weird crunch sound, but figured it wouldn’t be anything.  I turned to one of my close friends after they got off the bus, and said “my foot just made a crunch sound, isn’t that weird?”  This friend had watched me fall, and then said “yeah, I’m pretty sure you’re hurt, I’m going to go get someone.”  I was confused, because I didn’t feel any more pain than usual, but when another close friend (with EMT training) inspected my foot, they noticed how swollen it was.  X-rays and MRIs later confirmed that I had broken my left ankle in four different places, and strained it in two.  Go big or go home.

Dealing with low vision and chronic illness is challenging on its own, and adding another injury into the mix was extremely frustrating.  Here are my tips for dealing with short-term injuries while also balancing other conditions.  Please note that Ehlers-Danlos Syndrome has been ruled out as a cause for my chronic illness and injury.

Document what happened to cause the injury

Right after it happened, one of my friends took a picture of the pothole I fell in, and explained that I had tripped over a stair as well, essentially falling off of a school bus.  Other friends immediately alerted the band director and other staff members as to what had happened.  This is especially helpful if paperwork needs to be filled out documenting what happened.

Tell the doctor you have low vision

When I fell off the bus, my parents had to come get me and then take me to the local urgent care.  We made sure to remind each doctor, nurse, and technician that I have low vision, which helped them with trying to figure out how I had injured my ankle in such a weird way.  We also mentioned I had suspected Chiari Malformation (this diagnosis was confirmed almost exactly a year after I initially broke my ankle) and that I had balance issues as a result.

Knee scooters are better than crutches

Crutches can be a bad match for someone with existing balance issues and low vision, as it can be difficult to see paths ahead.  My parents rented a knee scooter for about two weeks from a pharmacy so that I wouldn’t break my other ankle trying to use crutches.  I had another close friend who would walk slightly ahead of the scooter and help guide me, as well as open doors for me.  This friend would also try and make sure I didn’t crash into a wall.

Make sure the brace is on correctly

The first nurse we worked with after I broke my ankle put my brace on incorrectly, and I had trouble learning how to put on the brace as well.  Have someone confirm that the brace is a good fit, and then have them teach you, kinesthetically, how to put the brace on and take it off.  When I had issues with my wrist earlier this year, the nurse at Student Health had me demonstrate to them how to take the brace on and off so they could make sure I wouldn’t cause myself further injury.  I had another friend confirm that my brace was for the correct hand.

Be prepared for elevated pain

Even though I have a very high pain tolerance, I found that even minor things could cause unbearable pain for me while I was recovering.  My migraines seemed much more intense because I had the additional pain of my ankle.  I spent almost all of my free time on my Yogibo Max, elevating my ankle, and trying to manage the pain.

Find a physical therapist who works with your conditions

My physical therapist from when I broke my ankle was not very familiar with low vision, and even less familiar with Chiari Malformation, which is why some of the exercises were more difficult than they should have been and caused pain.  I switched to a different physical therapist later on who was very familiar with Chiari Malformation, and was able to work with my low vision as well.

Find supportive pillows

Elevating the injured body part is very important.  When I hurt my wrist, I had this miniature Pillow Pet that I was always resting my wrist on, even while I was sleeping.  For my ankle, I often rested my foot on top of my backpack at school, or on a set of pillows while I was at home.

Ice packs

I recommend having several different ice packs ready to go at any given time.  My favorite ones are the flexible gel bead ice packs, because they do not feel super hard and I can easily conform them to whatever is hurting.  Here’s the one I have that can wrap around anything.

Add this to your medical history

Make sure to add the injury to your medical history for when you travel to doctors.  Believe it or not, my broken ankle was a factor in my diagnosis for Chiari Malformation, because my balance and leg spasms at the time were consistent with the condition.

Laugh about it

Not long after my injury, I was laughing a lot about the circumstances that had happened, as I really thought it was funny that I had fallen off a school bus and potentially broke my ankle.  Same with when I badly bruised my wrist after falling down a flight of stairs on my way to band practice.  While they are very lame injury stories, this is another day for me with low vision, Chiari Malformation, and occasional bad luck.  It’s just another part of life!

Life with Chronic Migraines

The year is 2011, but I’m in too much pain to remember that at the moment. I’ve forgotten a lot of things- my own name, the name of my cat, what town I lived in, and who the president is. All I can sense is levels of pain that I have never felt in my life before, and I wish they would stop. My parents thought I was having a stroke, the local hospital thought it was a drug overdose. It wouldn’t be until three days later at the children’s hospital that I would get pain relief and the diagnosis of chronic migraines, something no one else in my family had.

Chronic migraines are defined as “more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use (International Headache Society).” Migraines commonly run in families, and can coexist with other neurological conditions as well. Another name for chronic migraines can be chronic daily headache. Since 2011, I have had more than 15 headache days a month, sometimes reaching up to 30 headache days, where I have a debilitating migraine every day, a symptom connected to my diagnosis of Chiari Malformation.

For me, my migraines are drug resistant, though my neurologists over the years have had me try several different medications with awful side effects. Topamax made me never hungry, Verapamil made me dizzy, Amytryptiline and Imitrex gave me allergic reactions, and Neurotin gave me worse side effects than I ever could have imagined. I was missing school to go sit in the nurse’s office or missing band performances because the flash photography was similar in frequency to a strobe light, my biggest trigger. I had to navigate freshman year of high school while on large amounts of migraine drugs with weird side effects, yet still having chronic pain. I wish that experience on no one.

I started to manage my symptoms with massage therapy and acupuncture, and found that helped a lot with managing my migraines. It didn’t lessen their frequency, but because there was less pain in my neck and shoulders, the pain seemed more tolerable. I also start finding simple remedies that help me manage my symptoms, like peppermint essential oil to combat nausea or doing yoga to release muscle tension. Using alternative medicine has helped me a lot, though I understand that it isn’t meant to cure my migraines.

My senior year of high school, I was in almost all virtual classes for several reasons, one of which was my chronic migraines. I would sleep through my first period class, come to school for second and third period, and often leave during fourth period. Alternatively, I would stay through fourth period and then go home and crash in bed. Sleep was really the only way I could manage my migraines, which could be triggered by flashing lights, loud noises, the weather, or seemingly nothing at all. Food triggers were ruled out as the cause of my migraines, as well as vitamin deficiencies and similar conditions. My migraines were confirmed to be caused by Chiari Malformation in October 2015.

Fortunately, I have been able to attend college several hours from home and continue to manage my migraine condition. I have a private bedroom, meaning I do not have a roommate, but do have 1-3 suitemates who I share a bathroom and living area with. My disability housing accommodations state that I should have a lower-level private room with air conditioning, and the ability to make my room completely dark, as I am sensitive to light and sound when I have migraines. I also have a file with Office of Disability Services that says I have migraines. I schedule my college classes at times where I usually don’t get migraines and often come home from class and sleep (read more about my bed here). I have also gone to class with migraines before, as I know the migraine won’t improve whether I’m sitting in my room or sitting in the classroom.

Often times, people can’t believe that I am able to function through my migraines so well, and ask how I am able to live through this pain. The truth is, I have two options- let everything consume me and just sit in my room all day, or get used to the pain and live my life. While that first option may be beneficial for some people (and I understand pain is relative), I have chosen the second option of developing a superhuman pain tolerance and just living life. I do not like talking much about my condition in real life, because I do not want sympathy or attention from others, especially people I barely know, as I can manage my pain just fine. My close friends and family know the depth of my condition, and that’s more than enough.

I can’t say that life with chronic migraines is the best thing ever, but I can say it has made me a more understanding person. Whenever someone around me experiences migraines, I can relate on a deep level to the pain, sensitivity to the world, and feeling like hair weighs 100 pounds. I understand there are people who have it worse than me, but my hope is that my experiences with chronic migraines can help someone else understand their condition more.

Having an Undiagnosed Chronic Illness in High School

Back in high school, people often asked me why my vision was so bad, why I had frequent migraines, why I wore a leg brace several days a week, and how I simultaneously looked completely normal.  It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself.  Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.

Isn’t there medicine/glasses that can fix this?

WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again.  Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have.  I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about.  Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is.  Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.

You’re faking for attention

Ah yes, I must be faking my condition.  I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage.  I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird.  I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick.  And most of all, I love  not being able to do my classwork because I can’t see it, and having the teacher give me a zero!  All sarcasm here, but people say that a condition is fake when it is something they don’t understand.  What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.

I wish I had your condition, haha!

I wish I didn’t have this, but hey, things happen.  There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights.  Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal.  I just laugh off the comment and drop the subject.

What do you even have?

If you can answer this question, then you would be a totally awesome person.  My condition baffled doctors for many years.  When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions.  About a year later, he looked at us and said “time to find that zebra!”  I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn.  Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had.  Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with.  I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition.

If I were you, I would be in bed

Well, I would love to be, here I am at school regardless.  Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done.  I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me.  While pain definitely is relative, I have learned to function through it and be able to continue living.

Why can’t you do this anymore?

As my vision has gotten worse, my need for accessible materials has grown exponentially.  I’ve also found it more difficult to participate in activities like dance.  It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done.  I got more into writing and playing instruments after I got sick, and took up several other interests as well.  This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done.

Have you tried essential oils?

I have had several people tell me that my symptoms can be cured by essential oils.  I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms.  I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.

Aren’t you a little young to be dealing with these medical issues?

Yes, yes I am.  Another favorite response to this question is “apparently not!”  Chronic illness can strike at any age, it does not discriminate.  While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that.  Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends.

Why can’t you do this, but you can do that?

The environment I am in greatly influences whether I am able to perform a certain task or not.  If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them.  Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in.  Just because I can do something one day doesn’t mean I can repeat the same task the next day.

It would suck to be you

Actually, no.  Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise.  I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning.  As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition.  It’s important to be grateful for the opportunities I have.  My illness will always be something I have, and never who I am.


Picking Out Glasses

When I was in eighth grade, I had these black wire glasses with turquoise accents. My friend had helped me pick them out, and said they would look awesome on me. Little did any of us know, they would turn into the absolute worst pair of glasses I ever owned. Every part of the frame broke at some point, the nose pads would get twisted, and the lenses would fall out constantly. Since the place I bought them from did free repairs, I brought in the glasses at least ten times before accepting that the frame just wasn’t going to work out.
Since then, I have befriended the opticians and sales associates at the LensCrafters I frequent and they have helped me get a better eye for what glasses work best for people with low vision, and what frames won’t break so quickly. Here are some of the things I’ve learned over the years about buying glasses.

How quickly can the glasses be made?

Most glasses with a low prism and/or bifocal can be made in an hour, which has been an incredible blessing, especially if I break my glasses beyond repair. Glasses with higher prism are made offsite in about a week but I have gotten them as quickly as four days after I placed the order. If the glasses have to be sent offsite, I get a spare pair as soon as my prescription is done being tweaked.

Tinting glasses

I have a gray tint in my polycarbonate lenses to help with light sensitivity, and have also had brown and purple tints in the past. Currently, I have a “level two” amount of tint in my glasses, but the lab tech can tint glasses as dark as you need them. Find a lab tech who has lots of experience tinting lenses for low vision. I have two favorite lab techs that tint my glasses the way I like them and can match tints by looking at preexisting lenses.

Pick frames for your lenses

Figure out the thickness of your lenses and find a frame that can accommodate thick lenses, if needed. Do not try and get away with the thin wire frames if you have prism, like I tried to do, but don’t resign yourself to wearing coke bottle or eighties fabulous glasses either! The optician will be great help in this.

Look at designer frames

After I finally gave up on the black and turquoise glasses, I got a pair of Coach frames that were more expensive. I never had a single problem with the frame and rarely had to bring them in to be replaced. The frame I chose was even able to accommodate my prism of 20 in a super subtle way. My sunglasses are Ray Bans frames and have been the same way. While there are some exceptions, the designer frames are awesome quality and can accommodate thick lenses with ease.

Face shape

I am a petite person and the very large frames that are in style overpower my face. I found that medium sized frames with rectangular shaped lenses work best for me. Don’t sacrifice functionality for style, however don’t be upset if you can’t rock oversized glasses like everyone else.

Automatic fitting technology

A lot of eyewear places now have automatic fitting technology that is done by taking a flash photo of the customer wearing the glasses. If you are sensitive to flashing lights, or bright lights, request to be manually measured, citing light sensitivity as the reason. I have a note in my file that says flashing lights are a migraine trigger for me and I must be manually measured for glasses.

Don’t buy a spare pair after getting a new prescription

Wait until the eyes adjust to the new prescription before getting a second pair. Because we buy so many glasses, if there is a special on buying two pairs of glasses, the optician will make a note in my file to honor the promotion when I get my second pair of glasses a few days after I adjust to the prescription.

Protection plan

If you have low vision, ALWAYS get the extra protection plan that gives free repairs and touch ups. Every few months, I have to get my tint done again due to fading from the sun and I need the backs of the glasses adjusted so they don’t slip off my face. Also, this plan guarantees a replacement pair of glasses if I break them beyond repair. Since I cannot function without my glasses, this is extremely important.

Understand that some vision isn’t corrected to 20/20, even with glasses

Instead of asking me which line on a chart I can read, I’m asked which line appears the clearest. I will never be able to read the small text on the chart, no matter what my reading prescription is, because I have a print disability. If the optician starts to panic that it’s impossible to read small font, explain that you have eyesight that is partially, but not fully, corrected by glasses. If they start asking uncomfortable questions or argue if that is possible, find a new optician or go to a different location for glasses.

Build a relationship with the people at the store

Going to a place where everyone knows your name, or at least your vision, is a great way to ensure high quality glasses. Try to frequent the same place so they can understand your likes and dislikes, and thank them often for helping you! I like to think that my ophthalmologist gives me the raw materials I need to see, and then the lab tech turns the materials into a finished product that lets me see the world around me, and run into fewer walls.

Eye Surgery, Part 2

It’s now been three weeks since my eye surgery, and my eyes have completely cleared up and are looking normal again.  Simce I now have glasses with a prescription (read part 1 here), I can really see a huge difference in my vision from before the surgery. I don’t have prism in my glasses anymore, so they are much lighter in weight and I can pick out pretty frames. My (executive/lined) bifocal has a weaker prescription as well. With all of these changes, I received a new diagnosis for my eye condition.

Decompensated strabismus is a condition where a pre-existing strabismus is aggravated by strabismus from another condition. I have had accommodative esotropia, a common form of childhood strabismus, since I was three years old, and when I was fourteen, my vision went into a downward spiral. This has been attributed to the onset of Chiari Malformation (CM), a brain condition that causes chronic pain, migraines…and strabismus. With both my brain and eyes fighting for control of my eyes, my vision got worse than if I had just had one form of strabismus. Doctors had previously believed I had idiopathic vision loss or a condition other than CM that could be causing this, even though there is evidence of it on MRIs. However, the diagnosis of decompensated strabismus was confirmed by my neurologist and ophthalmologist following my surgery and led to further evidence that CM is a factor in my vision loss, though not necessarily the cause of it.

The surgery weakened one muscle in each eye and gave me the ability to see distance and eliminate my double vision, though I still see double when I am not wearing glasses or if I am tired. I can see about fifty feet directly in front of me clearly with glasses, and I can recognize faces and text from twenty feet away. The surgery did not correct my limited peripheral vision, lack of depth perception, or my print disability. I also still need a tint in my glasses to help with light sensitivity, though it is not as dark as before.

I am so glad that I had this surgery and that my ophthalmologist was able to improve my vision so much. When I went to get my glasses made, the employees at the store looked at my new prescription and my previous prescription, and joined in my excitement when I was able to see single images for the first time in six years when I put on my new glasses a few hours later.  It’s a whole new world.

Eye Surgery, Part 1

Exactly one week ago, I had eye surgery on both eyes for strabismus. My vision has been declining for a long time and I needed a prism of ten in each eye, plus a temporary prism of five, for a total of 25 prism. Since my eyes would just continue to need more and more prism, my ophthalmologist and I made the decision to have muscles strengthened or weakened in each of my eyes to prevent my eyes from getting worse.

This was not my first eye surgery. In 2008, when I was eleven years old, I had one muscle eye surgery in my left eye after I had relentless double and blurry vision following a volleyball to the eye a few months earlier (long story short, don’t encourage the person with no peripheral vision to join in for class field day). I woke up from the surgery not needing bifocals anymore and I rode a bike for the first time eight weeks later. It was amazing!

Fast forward eight years, and I’ve been in prisms for the last six years and am back in bifocals. Due to sensitivity to light, I’m wearing very dark glasses full time and also have to use a blindness cane because I can’t tell the difference between flat ground and a pothole. I walked in to see my ophthalmologist of six years right before school started, when the double vision was so intense and blurry that I couldn’t read anything more than three feet ahead of me.

“Well, young lady,” he told me, “you’re a mess.”

He wrote me a new prescription and we started discussing the possibility of surgery to help prevent from my eyesight from getting  worse. We made the final decision for surgery about three months later, after I finished my semester at college.

Fast forward to surgery day, and I was more than ready to get this over with. Because I wasn’t able to wear anything that went over my head after the surgery and I don’t like button down shirts, I was wearing one of these tank tops, which I could just step into or stretch the neckline to fit. For the surgery, I was allowed to wear yoga pants and fuzzy socks in addition to a hospital gown. I received pain medication and anti-nausea medication pretty much immediately after I was taken to the preparation room, and before I knew it, I was getting the anesthesia and loudly singing “Lucy in the Sky with Diamonds,” which probably embarrassed my mom to no end.

One hour after surgery, smiling with my sunglasses
One hour after surgery with my sunglasses

After the surgery was done, I woke up feeling no pain from my eyes. In my mind, I thought I had just woken up and, based on the size of the twin bed I was in, I must be in my dorm. I then asked myself why it felt like there was something in my arm, and then I realized I was in a hospital, and I’d just had my eye surgery. Apparently, I talked to the nurse for a few minutes afterwards about The Beatles and then asked where my mom was.

Instead of putting on prescription glasses, my eye doctor requested I wear reading glasses for two weeks following the surgery while my eye muscles relax and the swelling goes down. Because I am sensitive to light, I went looking for a pair that were tinted and that could be sent to my house reasonably fast. These glasses were everything I was looking for and more, and I have worn them very comfortably for the last week. They are $20 for one pair with Amazon Prime shipping. While wearing them, I can read large print and see things about eighteen inches in front of my face.  With these glasses, I could easily read screens of my devices without a problem, as these are more tinted glasses than actual sunglasses.

24 hours after my eye surgery.  My eyes are half red and still crossed.
24 hours after eye surgery

Following the surgery, I spent the rest of the day in bed and light hurt me a lot, but I was not in pain from the surgery. I was able to eat pancakes later that night at a restaurant with my mom and brother, but the lights over our table had to be turned off so I could concentrate on eating.

One week after eye surgery and six days after steroid drops.  My eyes are clearer
One week after eye surgery

Right now, I’m now on day 6 of steroid eye drops three times a day. They feel like acid being dropped into my eyes, but my eyes are starting to clear up more and look less gross. I have left the house maybe twice since I came home, and I went outside for five minutes and came inside feeling like my eyes were on fire because of the air. I get measured for real glasses next Wednesday, and we’ll assess how my vision is then.
Until then, I will continue to lay low and write more for my blog. I have so many great posts planned for 2017 and I’m planning many collaborations as well. To make sure you don’t miss a post, type in your email to get alerts when I add more content to the blog. You can find the widgets on the right side and the bottom of this page.
Here’s to 2017!