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.

My College Bed

My College Bed

When I was shopping in preparation for freshman move-in, one of the main things I focused on was my bed.  I have Chiari Malformation, which causes severe back and neck pain, as well as chronic migraines that can only be treated with sleep, so I spend more time resting in bed than the average college student.  Because of this, it was extremely important that my bed be as comfortable as possible, and be a place where I could easily recharge, as well as manage my pain.  Here is everything I have for my bed, starting from the foundation.  I live in a single room, meaning I am the only one in my bedroom.

Mattress

While I didn’t have to buy this, I thought it might be helpful to show off my mattress with nothing on it.  While it is possible to request a full size mattress through disability housing, I have the standard college sized mattress, which is a Twin XL.  After sleeping on it at college orientation with nothing (and lots of back spasms), I got an idea of what I would want to look for in padding.

Wamsutta Cool and Fresh Fiberbed

The Wamsutta Cool and Fresh Fiberbed is the only mattress topper I have ever needed for my dorm bed.  It is very soft, but still provides fantastic support.  It also fits nicely in the college washing machines.  I never had to add any other mattress supports, as this provides everything I needed.  It is a soft pillow top cover that fits my mattress exactly.  It can be found at Bed, Bath and Beyond and Amazon.

Room Essentials Pocket Sheets

I bought a fitted sheet for my bed as well as several different pillowcases from the Room Essentials brand at Target.  They are easy to care for and remind me of t-shirt material.  One of my favorite features is that the fitted sheet contains side pockets, which work as a great holding place for my glasses at night.  I bought two fitted sheets and seven pillowcases (more on why I bought so many later in the post).  Sheets can be purchased here, and pillowcases can be purchased here, but are only available in-store in some regions.

Life Comfort Blanket

I bought this blanket from Costco about two years ago and loved how soft it was- in fact, I fell asleep during move-in while using it.  One downside though was that it MUST be washed before first use, or else it sheds everywhere!  I was covered in gray fuzzballs, but the problem went away right after I washed the blanket.  It can be found on Amazon here.

Twin XL Heated blanket

My college allows students to have heated blankets, but not heated mattress pads.  I received a heated blanket as a Christmas present in high school, and it has been one of my favorite gifts ever.  I got a Twin XL sized blanket for college, and I use it often- I like to turn it on a few minutes before I go to bed so that my bed warms up.  I cannot find a link for the one I have, but it was purchased for less than $50 at Bed, Bath, and Beyond.

Room Essentials Microplush Blanket

This blanket is great for layering with other blankets, or simply on its own.  I have a very similar blanket on bed at home, so I knew I would want one in college as well.  It hangs off my bed a bit, but I think that is because of how my bed is pushed against the wall.  Get it at Target. 

Room Essentials or Xhilaration Comforter

I have both Room Essentials and Xhilaration comforters layered on my bed.  They are fairly lightweight, and I can also rearrange my blankets so that I am sleeping on top of one (the comforter pictured is from Xhilaration).  I found very little difference between the Twin and Twin XL sizes between these brands, as the comforter on top was labeled a Twin size and it generously covers my bed.  They come in a variety of designs- here is my Room Essentials comforter, and here is my exact Xhilaration comforter.

Yogibo Caterpillar Roll

This pillow is what keeps me from rolling face first into the wall every morning, a problem that I often faced when I lived in a dorm with concrete walls.  It also provides great support for my back when I sleep on my side.  Get it from the Yogibo website or on Amazon, with Prime shipping.

Room Essentials Extra-Firm Pillow

I needed a pillow that was cheap in comparison to my other pillows that I could use for layering, so picked up one of these at Target.  I don’t use this as my main pillow, so it didn’t really matter how much support it had.  Get it at Target here.

Beauty Rest Extra Firm Pillows

Why do I have five of these pillows?  Well, with all of my different spasms, I have found that these pillows, in combination with firmer ones, provide optimal support and help me rest when I have terrible pain.  They do not put additional strain on my neck, and I can sleep in any position that I want.  Why do I have an odd number of these pillows when they come in packages of two?  I don’t know.  I originally purchased these from Costco, but they appear to no longer be available.  Get them from Amazon with Prime shipping here.

Yogibo Sleepybo

I talk about Yogibo products more here, but this Sleepybo is a very firm pillow that reminds me of my beloved Yogibo at home.  This pillow works amazing when I have pain behind my eyes or for elevating my legs.  It is also one of the main pillows I use at night.  It is currently out of stock on the Yogibo website, but can be found here.

Purelux comfort cool pillow

Another great Costco purchase, this is the firmest pillow I have, and the cooling sensation is absolutely amazing when my migraines make it feel like my hair weighs a hundred pounds.  It also has a curved end, so I can insert in a neck pillow if I need one, which works awesome for when I have neck spasms.  I found it on Amazon here.

Cozybo

Since I use so many blankets,  I like to keep a lightweight one at the top for when I am sensitive to temperature, or suddenly develop a migraine and find that it’s too much energy to be underneath the covers.  As mentioned in my Yogibo review, this is my brother’s favorite blanket and Yogibo product, because it is both warm and lightweight, and the material is very smooth.  Get it on the Yogibo website here.

How I stack pillows

When I stack my pillows to go to sleep, I usually do it in this order:

  • Cooling pillow on the bottom
  • Beautyrest pillow
  • Sleepybo
  • Beautyrest pillow
  • Beautyrest pillow between pillow stack and wall
  • Extra firm pillow on side facing wall
  • Beautyrest pillow on side facing wall
  • Extra Beautyrest pillow for rearranging or against the wall

Toddler Safety Bedrail

So, my first morning in my dorm room, I rolled out of bed…and then fell three feet to the floor because I forgot how high the bed was.  My parents bought me one of these toddler safety bedrails from Wal-Mart and set it up for me, so I wouldn’t do something like that again.  Weirdly enough, I’ve gotten lots of compliments from friends who would visit my apartment and talk about how they were constantly falling out of bed.  It also helps to reinforce my stack of pillows. Get it from Walmart here.

I am lucky to be able to sleep for hours at a time, and have so many things to help me sleep as well.  A lot of these items will be on sale in the coming weeks for back-to-school, so keep an eye out and set price drop alerts!

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Yogibo for Chronic Pain


I first learned about Yogibo long before I had chronic pain when we visited a store in Connecticut. My brother and I both loved how cozy everything was, but it wasn’t until years later that we discovered how amazing Yogibo really is.

I started dealing with chronic pain as a result of Chiari Malformation, a structural neurological condition, when I was fourteen years old, though I didn’t receive a diagnosis for four years. With this condition, I have constant pain in the back of my head, neck, and back, as well as the back of my legs and arms. I also get spasms and migraines, which makes the pain worse. I was also in a car accident that damaged my neck and increased my normal base pain level in my neck when I was a freshman in college. While I am very good at functioning through my pain, I rely on a lot of special tools to help me with pain management. A lot of these tools are Yogibo products.

Yogibos are similar to bean bags, but with much smaller beads and smooth fabrics, instead of crunchy feeling covers. They make a variety of products such as giant pillows, bedding, supports, and even aromatherapy. Their main target audience is children with sensory disorders, but the products are amazing for people with chronic pain as well. My brother and I have never encountered a product we didn’t like, and have difficulty picking a favorite. Below, I have outlined ten of my favorite Yogibo products and shown how they help me manage my chronic pain. This post is not sponsored by Yogibo, I genuinely love their products and want to share my favorites.

Yogibo Max
My first Yogibo product was purchased nearly four years ago when we moved to a new house and my brother and I got the Yogibo Max for our rooms. I spend hours lying down on it, as the support is perfect for my back and legs, and does not aggravate my pain. It’s easy to fall asleep on too, which is great when a migraine suddenly hits. When I broke my ankle, I found that lying on the Yogibo was one of the only ways I could relieve the pain. My friends and I use it as seating when they visit as well. This is the only Yogibo product I do not have at college with me due to its size, which is comparable to my Twin XL bed. Get it here.

Caterpillar Roll
I originally purchased this because I kept rolling into the wall while I was sleeping and would hit myself in the face. I have found that when I sleep on my side, the roll provides awesome support for my back, and combines the firm support of the original Yogibo with the soft cozy feeling of my bed. On particularly bad spasm days, I twist the roll so it wraps around my abdomen and provides compression. Get it here.

Yogibo Support
When I found out I couldn’t fit most Yogibo products into my freshman dorm, I was recommended the Support pillow. I most often use it when I am in the end stages of a migraine when I can use my electronics, but sitting upright is too much of a challenge. My friends also frequently sit on the floor with it- one of my friends will walk into my room and immediately grab it, and frequently talks about how much they like it. Get it here.

Zipparoll
After I was in a car accident and started having more neck pain than I ever had before, I was trying every neck pillow in sight, hoping it would help me manage my pain. The ZippaRoll became a fast favorite because of the familiar smooth and supportive material, as well as the fact it could be configured into a variety of shapes, as well as keep ice packs from falling down. I used it both on its own and in conjunction with other pillows. It also works well for lower back support when in the car. Get it here.

Moon Pillow
I purchased this around the same time as the ZippaRoll when looking for neck pillows. I found that it provided phenomenal back support when I was sitting upright, and worked as a neck pillow when I was lying down. I can put it underneath my hip when sleeping on my side, or underneath my chin to make sure I don’t strain my neck while sleeping. I also use it combined with the Yogibo Support. Get it here.

StressLess
This is one of the only tools that helps my shoulder spasms, and has helped me fall asleep many nights. I found that throwing it in the microwave for a minute and setting it on my shoulders provides an amazing soothing feeling unlike anything else. When I start getting spasms while talking to friends on voice chat, they will tell me to go microwave my shoulder pillow. It can also be thrown in the freezer, but I find that my shoulder spasms are more receptive to heat. It is an aromatherapy product, but this does not bother me as I find the scent relaxing. Get it here.

BodyHug
One of the newest additions to my collection, the BodyHug is another aromatherapy pillow. I typically use this for cold therapy on my back, and it also helps with my shoulders when I am lying on my stomach. I’ve also had friends borrow it when they had very bad abdominal cramps- some preferred to warm it in the microwave for about 30 seconds, others preferred the cooling sensation. Get it here.

Yogibo Mate
This may seem like a silly choice, as it is a stuffed animal made out of Yogibo material. I got one of these when I had eye surgery in December and found that it was great to lean against and squeeze, and I could easily rest on top of it if needed. Mine is a sloth, but there are other choices. Get it here.

Cozybo
My mom had bought this for me online and had it waiting for me at home. When it came in the mail though, my brother looked at it, felt it, went “hey this is awesome,” and promptly took it upstairs to take a nap. He says if he had to choose a favorite Yogibo product, it would be this one. I’ve since gotten my own, and it’s my default choice for when I take a blanket in the car, as well as during the warm summer months. I love the smooth material and how it is the perfect weight. Get it here.

Sleepybo
Another pillow that my brother enjoys, this is a normal sized pillow filled with Yogibo material. This was awesome after my eye surgery when I had to spend a while in bed, and it is one of my favorite pillows that I own. I like to stack it with another firmer pillow on the bottom and a softer pillow on top for optimal comfort. It’s currently out of stock online, but you can find it here.

 

Some of the other products currently on my wish list include the Ms. Bliss weighted blanket, WristWiz keyboard support, Yogibo round pillow, and Yogibo cube. My brother has also wanted to try the Lukso fitted sheet, Ms. Bliss weighted blanket, SinusMinus, and Yogibo Double. We both love Yogibo products, and love stopping by the stores whenever we see one- unfortunately, the closest one is currently almost two hours away.

Overall, I can’t imagine managing my chronic pain without Yogibo. As I finish typing this, I have the StressLess in the microwave and am sitting against the Yogibo Support with the Moon Pillow while wrapped in the CozyBo. These products are amazing for my pain management, and I am always quick to recommend them when a friend is dealing with pain. These products really are that incredible.

How To Choose a New Phone When You Have Photosensitivity

I have been researching getting a new phone for some time.  I thought I had thought of everything, studying all of the technology specifications and comparing over a dozen phones side by side.  Ultimately, I chose the Motorola G5 Plus, which had the newest version of Android and lots of other interesting functions.  I had been a Motorola customer for nearly four years, so it seemed like a great fit.  Unfortunately, not even ten seconds after I turned it on, it started flashing uncontrollably and gave me a migraine- strobe and flashing lights trigger migraines for me.  It wasn’t just the opening screen that strobed either- there were several other ways that this phone was capable of triggering a migraine for me.  After an hour on hold with Motorola customer support, I was told there was nothing I could do to disable these functions and I should just return the phone.  All of the new Motorola phones also have this strobing display, so now I am left to research another phone.  Here are five things I will be looking for in this new phone, things I didn’t even think to look for before.

Turn the phone off and back on again

What does the startup animation look like?  Is it a flash of lightning, or rapidly changing colors?  What about fast moving images?  Any of these can be a trigger for a migraine, seizure, or other medical issue.  I would have someone else who knows your condition check this for you so you aren’t hurt by the display.  After I first saw the flashing display yesterday, I had two of my close friends who are familiar with my condition look at the animation, and they agreed it was very unsafe for someone with photosensitivity.

Strobing notifications

One of my friends has a phone where the flash on their camera creates a strobing effect whenever they receive a call, text, or notification.  If you purchase a phone with this function, make sure it is not enabled by default to start strobing for notifications.  Also, if you have a friend who uses this function, kindly ask that they disable it when you are around, because it can cause you to have a medical issue.

Does the screen flash when you zoom in?

When you double/triple tap the screen to magnify, does the screen do a short strobe animation?  Most animations can be disabled on a phone, but some models may not allow this strobe effect to be disabled.  It’s also worth checking to see if the phone screen strobes for other gestures, or when apps are opened.  Sometimes you can change what animation displays, so you can choose something that isn’t a strobe effect.

Color filters

If your eyes have trouble processing bright lights or colors, check to see if the phone display supports adding a color blindness mode or light filter.  I have a filter on my current phone that filters out very bright lights without affecting the color display.  I also use night mode on my phone when I am dealing with a migraine- this is a red-pigmented filter designed to block out the blue light from the phone display.

 

Does the keyboard flash?

When typing, does the phone keyboard create a strobe or flashing effect?  Luckily, keyboards and other third party apps can easily be replaced- check out my post on how to make Android accessible here.  However, it may not be worth the hassle if there are so many other flashing lights on the phone.

 

It’s rather unfortunate that an increasing number of phone manufacturers and companies have been adding flashing lights to their designs.  With more and more people being diagnosed with migraines, epilepsy, and other photosensitive conditions, it is more important than ever to remember one of the most important rules of web design- don’t create anything that can cause a seizure.  I hope in the future, companies will stop using strobe and flashing lights in their designs, but until then, the search is on for a new phone.  As sad as I am to leave Motorola, I can’t risk triggering a migraine just by using my phone.

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.


 

How to Deal With Being Sick in College

I seem to get sick once a semester, and because of my existing chronic illness, I am more miserable than a majority of my friends, who just have whatever sickness is going around. One of the main reasons I am so miserable is because with Chiari Malformation, my head pain gets worse every time I sneeze or cough, and my vision also becomes extremely difficult to control. Thankfully I’ve already been sick once this semester, so I shouldn’t have to worry about getting sick again. Here are some of my tips for dealing with being sick in college.

Have a pre existing file with Student Health/Campus Clinic

My file contains information like my drug allergies/intolerances and a summary of my low vision and Chiari Malformation, as well as other chronic conditions. I also have a list of medication I am on and an abbreviated medical history. This helps the doctors because they don’t have to ask for a lot of information from me.

Skype into class

Since no one else wants to get sick either, ask to Skype or phone call into class for the day. If this is not an option, ask the professor for guidance on class attendance.

 

Have food delivered or ready to be picked up

 

The dining hall at my school has special prepackaged meals that can be picked up by a friend or RA for a student who is sick. If that isn’t possible, try to visit the dining hall during the off hours, and avoid touching things as much as possible.

 

Have over the counter medication delivered

 

I stocked up on over the counter meds when I got sick by ordering them using Amazon PrimeNow. At the time, everything was sold out on campus because so many students were sick, so this system worked. If you must travel somewhere off campus, try not to take the bus, and instead ask for a friend to drive you. Bonus points if this friend has already been sick and/or is the one that made you sick.

 

Spend time recovering

 

Don’t just mask the illness, make sure to treat it and spend time resting. The last time I was sick, I found myself sleeping for several hours, something that helped my migraines and eyesight tremendously. By spending time away from others, you will be able to relax and focus on getting better.

To anyone reading this out of necessity, I hope you feel better soon!

To The Parent Using Flash Photography in a Restaurant

Dear Parent,

I know you were very excited today to be attending the end-of-season party for your child’s sports team at a local restaurant today. The entire team was there, enjoying pizza and talking to each other, sometimes very loudly. There’s nothing wrong with enjoying the celebration, and this letter isn’t to complain about the noise (though my brother wasn’t happy about it being so loud). My problem is that to document this occasion, you decided to take several photos with the flash on. By doing this, you ruined my evening, and could have sent someone to the hospital.

You see, I have chronic migraines that are triggered by strobing or rapid flashing lights, such as those from a camera. When I see those lights, I get an intense migraine that knocks me out for a few hours. However, it’s not just me and fellow migraine sufferers who can have an adverse reaction to flashing lights. Photosensitive epilepsy is common in children, and those flashing lights could trigger a seizure. Seizures aren’t just limited to epilepsy, either- there are many other conditions that can have non-epileptic seizures caused by flashing lights. Some people have light sensitivity in general, and bright flashing lights can be an issue. Even people with anxiety disorders and PTSD can have flashing or strobing lights as a trigger. That’s a lot of people that could be affected by a rapid camera flash!

I understand wanting to photograph your child with their friends, but by using flash photography, you could be putting other people around you in danger. A better solution might be to take a big group photo at the beginning or end of the event, so that way you can see everyone. You can also just turn the flash off and continue taking pictures like you were, and simply retouch them for lighting later.

I’m pretty sure you ignored my mom when she told you that your camera could trigger a seizure, or a migraine like it had in me. My hope is that someday you will understand just how dangerous flashing lights can be for others, and you will think twice before using that camera flash in a crowded restaurant. For all you know, your child could develop a condition like this, and then you’ll be the one wishing all of the flashing lights would disappear.

Sincerely,

My head still hurts

 

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!