Medical Emergencies in College


One night in November during my freshman year, I was talking to my friend in a different time zone when suddenly, I felt like I was about to black out. There was blinding pain in my abdomen that made it feel like I had gone into labor, been hit by a car, and shot, all at the same time. I had trouble talking at first because I was in so much pain. Luckily, I was able to quickly get medical attention and received a diagnosis for what was going on. Below, I have outlined the steps I took to dealing with this medical emergency, as well as other tricks I have learned from friends.

Call the RA on duty

I lived in a single room that had a bathroom separating my room from my resident advisor’s (RA) room. I texted her telling her to come in my room as something is horribly wrong, and she entered my room via the bathroom, and contacts not only the RA on duty, but also the head RA for the building since they had the most experience.  That’s three RAs involved in this situation, but normally one or two is enough. They took a note of my symptoms and call 911.

When one of my friends had a similar emergency and had trouble reaching the RA, they called the 24 hour housing desk for assistance, and the desk was able to contact the RA and call 911 on their behalf. While students can call 911, it is preferable that they tell the RA before doing so, or shortly after, so there isn’t a surprise ambulance or fire truck.

Collect documentation

While the other RAs called 911, I had my RA walk around my room and grab things I would need for the hospital. This included my medical and state IDs, which we put with my room key on a lanyard around my neck. Other things we grabbed included phone/iPad chargers, my blindness cane, a pair of shoes, and my favorite stuffed animal.

One of my friends keeps a folder with their medical history and other important information for paramedics next to their bed along with a pre-packed bag, so this information is easy to locate.

Ambulance ride

When the paramedics arrived, I explained that I was in intense abdominal pain, and mentioned that I had low vision immediately, because I didn’t want them to remove my glasses or have me sign a bunch of paperwork without explaining it to me first. I also told them I had been diagnosed with Chiari Malformation, but the pain I was feeling was something I had never experienced before. In addition, I requested they turn off the flashing lights on the ambulance while I was getting in, as I have photosensitivity. They were very understanding and honored everything I requested. It’s worth noting I do not have a medical bracelet. I rode in the ambulance alone, my RA legally could not go with me. Having the ID cards around my neck was very helpful as they were able to easily take down information. Also, while in the ambulance, I took a picture and sent it to my professor for class the next day, saying that there’s a strong chance I wouldn’t be in class the next day. I also sent the picture to a friend in the same class in case the teacher didn’t receive it.

Hospital

When I got to the hospital, I was immediately taken to an ER bed, and I again repeated that I had low vision and Chiari Malformation. Someone came in and read me all of the paperwork for consenting to treatment, and then I was able to sign everything. I also went over my allergies and past medications (I was not on any medication at the time), and then they started giving me painkillers and running tests to rule out things like pregnancy (my symptoms strongly resembled an ectopic pregnancy), alcohol, and drug related factors. Because I was under 21, I was seen by a mix of adult and pediatric medical staff.

Hi mom!

I called my mom from the hospital bed and explained what was going on. About four months earlier, I had been in the ER for similar symptoms but the tests came back inconclusive. She called a local family friend to come sit with me in the hospital while she drove up there. Having someone else there was extremely helpful.

Tests on tests on tests

Each time I went for a test, I would remind the person running the tests that I have low vision and can’t see very well with or without my glasses. Eventually after several different tests, one which involved me drinking 64 ounces of water in less than ten minutes followed by an additional 24 ounces, they finally figure out what happened. I had at least four large ovarian cysts burst all at once (my friends and I would later refer to this experience as the time I exploded), and my mom arrived at the hospital just in time for that diagnosis.

Discharging

I was discharged about twelve hours later, and received prescriptions for me to fill. My mom and I were able to fill the medication with no issues, but had I been alone and able to walk, I would have taken a university shuttle to the pharmacy. The hospital staff said I had to go home, not to my dorm, to recover from this, so I went back in my dorm to grab necessities and then left. I contacted my other professors to let them know I would be absent from class indefinitely and attached hospital selfies from earlier in the morning. This was temporary documentation until my mom could scan in the discharge papers. Other ways my friends have documented their hospital visits besides hospital selfies include sending pictures of hospital bracelets and having a nurse talk to professors on the phone.

Although my hospital experience went fairly smoothly, I wish the symptoms I had on no one, as it felt like the pain would never end. Stay tuned for part two on this post for how I attended classes remotely for a month.

Dealing with medical emergencies while living in dorm housing

My College Desk


If I’m not sitting in my bed, chances are I am typing away at my dorm desk.  Between running a blog, taking virtual classes, working on assignments, and talking to friends, it’s no surprise that I can easily spend several hours reading, typing, and browsing (learn more about reducing eye strain here).  Here are the various tools that help me with productivity, just in time for back-to-school shopping.  Links to products are included throughout the post.

The desk

My desk tabletop measures 22″ x 43″, and is 30″ tall.  There is a bottom opening that is 24″ wide, and three drawers on the side (note that they do not have drawer pulls).  Originally, my desk had a hutch screwed on the top of it, so to fit my computer, my brother unscrewed the hutch and we put it in a closet.  I did not have to file any accommodations to get this type of desk- more on filing housing accommodations here.

Marble contact paper
I wrapped the entirety of my desk in marble contact paper to protect against spills, scrapes, and other minor damages.  It took about three rolls to cover my entire desk.  A cool bonus feature is that I can write on it using dry erase markers.  Here are the rolls from Amazon.

desktop computer
Because I have low vision and type all of my assignments, I have a desktop computer that takes up a large portion of my desk.  I have an entire post on why I chose to bring a desktop computer to school here.  I have an HP Sprout, an unique computer with a large touchpad and 3D scanner that runs Windows 10.

headset
A few of my online classes required that students purchase a headset for interactive sessions, as well as recording audio for assignments.  I also purchased a headset stand that plugs into the computer via USB, and has a few USB ports built in as well.  Here is my headset stand– my headset was discontinued, but it is a wireless model by Logitech.

usb hub
I have a fifteen port USB hub that allows me to plug multiple devices into my computer at once.  Normally, I plug in things that I don’t need to unplug often.  Currently, I have my headset stand, cables for my main electronics, my wireless mouse, Echo Dot, printer, and my wireless keyboard plugged in, and I have extra ports as well.  Get a similar device here.

urbio perch
I have one of the Urbio Perch magnetic storage systems hanging on the side of my desk.  I have two of the “Bitsy” cups and one of the “Stumpy” cups.  These cups hold my highlighters, sharpies, markers, and pens easily, and I’ve never had any issues with them falling down.  Here is a link to Urbio products available.

printer
While this is technically not on my desk, I got a Brother printer and paper on super sale, and it is fantastic for when I have to print a class assignment at the last minute.  The printer sits on top of my mini-fridge about five feet from my desk.

amazon echo dot
I have an entire post on the Echo Dot here, and it has been amazing to see how much it has helped me in college.  I most frequently use it to listen to music, check the weather, perform calculations, and listen to the news.

surge protector
I have a lot of electronics in my room- see the whole round up here.  A surge protector is a definite necessity!  Please note that some colleges may require students to buy a certain brand, or have a limit on how many outlets the protector can have.  In addition, my college bans extension cords from dorm rooms.

medication drawer

Medication

In order to help me figure out how many pills are in a dose, I added tactile labels to the lids of pill bottles so I would know how many to take at a time (get the labels here).  Some of the over-the-counter medications I keep in my apartment include allergy pills, Neosporin, Ibuprofen, and Aleve.  I keep all of my medications in their original containers, and have copies of prescription labels stored to my computer, where my name is clearly displayed.

Band-aids

Part of life with low vision is constantly bumping into items and falling over.  As a result, I have amassed quite the collection of band-aids, and store them in small fabric pouches for easy access.

Spare glasses

My glasses are an absolute necessity for me- if I’m not wearing them, I’m either asleep or something is horribly wrong.  I keep my spare glasses in my top drawer for easy access, and my friends also know this so they can grab the glasses if need be.

Braces

I keep an ankle and wrist brace for helping me deal with spasms, as well as various copper-infused compression sleeves.  I believe I got these from the local drug store.

First aid kit

My first aid kit was a prepackaged kit from Target- get it here.  It contained 140 pieces when I bought it- items like gauze, tweezers, band-aids, tape, gloves, instant cold pack, and wipes.  I probably could have purchased all of these items separately, but I like having the plastic box.  Inside the box, I also have medication that may be more likely to spill, such as ear drops and eye drops.  I also have a smart thermometer that synchronizes with my iPad and Android phone, and while I may not use it a lot, I purchased it in a flash sale on Amazon for less than $10, and appreciate having a thermometer I can see.  Get it here.

Pain relief

I have various pain relief devices to help me with my chronic migraines and chronic pain.  If there is one that I couldn’t live without, it’s my portable TENS unit by IcyHot.  It feels like a massage and delivers powerful relief on my back, shoulder, and legs.  I have two units because I thought that the unit for knees was different than the one for back pain, but it’s only the pads that are different.  I literally recommend this every time someone says they are in pain.  Aleve makes a similar device as well, and both frequently go on sale- I got mine for $20.  Get it here.

Extra cables

I keep extra microUSB and lightning cables in case one of my cables suddenly breaks.  I get these from Amazon, and I get free two hour delivery as well.  There is also a vending machine on campus that allows customers to purchase cables and AC (wall) converters.

Assistive technology devices

I keep smaller assistive technology devices like magnifiers, eReaders, and iPad cases in here for easy reference.  I have more assistive technology devices than average because this is what I am studying.  My E-Bot Pro does not fit in a drawer, and instead is next to my desk.

Headphones

I keep a couple of pairs of earbuds that I received with various devices, as well as a wireless Bluetooth headset that can connect to my phone.  In addition, I have a pair of ear plugs that I use for band and for taking tests.  Get them here.


My bottom drawer is where I keep all of my printer paper, cardstock, printer supplies, and other bulky items.  I also store a sliding table for my E-Bot Pro in here that I received from the Department of Blind and Visually Impaired.  This is twice the size of the rest of my other drawers.


At my desk chair, I have a back support pillow that wraps around the back of the chair.  The support level is amazing and I can type for hours without aggravating my back.  I love it so much, I got it for my dad for Christmas, and he uses it while sitting on the couch.  Get it here.

I am very lucky to have so much technology accessible to me, as well as a quiet place to work.  I did not receive any form of compensation for reviewing any of these items, I genuinely love them and recommend them to everyone.

Two of Everything: My Life with Double Vision


Following John McCain’s diagnosis of glioblastoma, a form of brain cancer, a lot more people have been asking me about how double vision is managed, as glioblastoma can cause vision problems such as double and blurred vision, as well as a variety of other symptoms.   It is a fairly rare form of cancer, though other politicians such as Beau Biden and Ted Kennedy had the same type of cancer.  Here are a few things I have learned from my experiences with double vision as a result of a non life-threatening brain condition that heavily mimics glioblastoma in terms of vision loss.

Some background

I was diagnosed with accommodative esotropia at three years old, a common childhood eye problem that causes double vision, issues with depth perception, and reading.  It is characterized by crossed eyes, with one eye turning inward towards the nose, although vision issues can start before the eyes actually cross.  For a lot of children with this condition, glasses can correct vision to 100%, and the condition naturally goes away by age nine.  Unless there’s something else.

My vision got rapidly worse around when I turned nine years old- on my ninth birthday, I was unable to see a parade going on less than ten feet away.  My vision continued to sharply decline when I was eleven, and I had a one muscle eye surgery in 2008 to prevent my eyesight from getting worse.  Around when I was 14, I started to experience chronic migraines, chronic pain, worsening eyesight, and several other symptoms, and was diagnosed with Chiari Malformation at age 18, a congenital brain condition that often isn’t diagnosed until teenage years.  Because I had vision loss as a result of the accommodative esotropia as well as Chiari, I received the additional diagnosis of decompensated strabismus, meaning I have low vision issues originating from my eyes as well as my brain (read more about my eye surgery for this condition here and here).

What my glasses look like

My glasses prescription does not fully correct my eyesight, no prescription exists that can.  In the past, I wore thick prisms in my glasses, which are similar to magnifying lenses.  These are extremely common for people with double vision following brain injuries or other neurological conditions.  After my eye surgery, I no longer wear prisms.  My glasses are also tinted a dark gray color due to my photosensitivity.

It’s not always two separate images

Depending on how my eyes focus, I can see two distinctly separate images, or two images blended together.  If a person is standing in front of me, I may see two completely separate images, as if identical twins are standing in front of me.  Alternatively, the images may appear as a shadow, as if one image is floating above the other.  The most common for me is to see the images blended together side-by-side, so a person appears to have two heads and three arms/legs.

It can be hard to figure out which is the original image

Sometimes, I can figure out which image is actually there, and which is the mirror image.  However, my friends will tell you, I spend a lot of time grabbing onto thin air thinking I found something, when it is actually right next to whatever I’m grabbing.  I usually realize this within a second or two, mostly because I have had this vision issue all of my life.

Can you drive with double vision?

While a select number of people may be able to drive with double vision, I do not drive due to my other visual issues.  None of my other friends with double vision drive either.

Reading and double vision

With double vision, letters run into each other or form shadows, and I have difficulty reading long words as a result of this.  Thankfully, when processing information, the brain does not read every letter, and normally I can infer what the word is based on context clues.  It is more difficult if I am reading an unfamiliar word, or working on a math problem where every letter and number is crucial.  In addition to the double vision, I also have blurry vision that makes reading standard print sizes impossible.

What’s a print disability?

A print disability is the inability to read standard text, usually due to a learning or visual disability.  Some examples of accessible text include large print, weighted fonts, Braille, and audiobooks.  Read more about print disabilities here.

Large print

Large print helps my eyes to focus better and helps me understand words easier.  I typically ask for size 22 Arial font, as it is clear to read.  I had an IEP all through school to receive large print services- more on my print accommodations here.  All of my devices have large print on them as well- learn how to make Android accessible here, iPad accessible here, and Windows 10 accessible here.

Contrast

Sharp white paper with black text provides a large amount of glare and can make the double images seem much more intense and difficult to decipher.  I prefer to use tinted backgrounds to increase the readability of font, and actually did a science project on this to show which colors work best.

How I read

In high school, I received textbooks through AIM-VA, a state organization that provides accessible educational materials to students with print disabilities free of cost.  I receive other books through Bookshare, a national accessible library that allows people with diagnosed print disabilities to read almost any book they want, from New York Times Bestsellers to classic novels for school (it also receives federal funding).  For college, I purchase digital textbooks and carry them on my iPad.  I love living in a digital age where I can find accessible print for almost anything in an instant.  I don’t feel like I’m missing out on anything.

Assistive technology

I also use a few devices that are specifically designed for helping users with double vision/low vision.  Portable closed-circuit televisions, or portable CCTVs, are some of the most common high-tech devices used for low vision.  I have an E-Bot Pro that I use to read larger documents such as tests, and a smaller Eschenbach SmartLux that is the size of my cell phone.  So even if I am presented with a document that isn’t in large print, I can access it easily with these devices.

Double vision takes some adjusting, but it is in no way a catastrophic condition that will dramatically alter someone’s life.  Technology has come a long way, and people with double vision/low vision can easily continue to work as long as they have assistive technology and other accommodations.  Besides, sometimes it’s fun to see two of everything- after all, it’s better to see two ice cream cones than one!

Ten “Weird” Things I Brought to College


As a student with low vision and chronic illness, my dorm room looks a little different than a typical room. I live in a single room, meaning I have no roommate, and share a bathroom with one to three people, as opposed to with the entire hall. I have been very fortunate to have this housing arrangement, and cannot recommend it enough for students with chronic migraines. Because of this atypical arrangement, I brought a couple of “weird” things to college with me to help me both inside and outside the classroom. Here are ten of the items:

Bed rail

My first morning at college, I rolled out of bed, literally- I fell from three feet in the air and landed on my face. My parents bought me a toddler bedrail for me to use at night so this experience wouldn’t happen again. I found it also keeps all of my blankets from falling on the floor. A bunch of my friends even went on to buy bedrails for their own dorm bed. My parents found a bedrail for $20 at Walmart.

Desktop computer

I will have a full post on why I chose to bring a desktop computer, but here are the simple reasons- about 50% of my classes are virtual, I rely on digital tools for school, and type all of my assignments due to dysgraphia. My specific computer also has a built in 3D scanner so I can easily enlarge items.

Contact paper

Having low vision means I’m more prone to spilling things and knocking them over- it happens so often, my mom called to tell me she saw a child with glasses knock over a cup and thought of me. I decided to cover my dresser, desk, and closet doors in contact paper to help protect against water that will inevitably be knocked over, or other messes. It cleans up very easily and doesn’t damage the furniture. I got marble contact paper from Amazon for about $7 a roll, and used 7 rolls total.

Blackout curtains

I have severe sensitivity to light when I have migraines, and require a completely dark environment to recover.  Lightning storms, or as I call them, nature’s strobe lights, can also affect my recovery.  My family purchased these blackout curtains from Target that block out all light when they are closed, and I had them fire proofed for free at a college event on campus, as curtains are required to be fire proofed in the dorms.  I got two of these curtains here.

Google Chromecast

There’s a full review of the Chromecast here, though I have used this device often. I stream videos, use it as a second monitor for my computer, screen-cast my phone, and more. It was a little difficult to set up, but my post explains how I did it. Get one here.

Rolling backpack

Starting my senior year of high school, I would use a rolling backpack for all of my school supplies. I am able to carry all of the materials I need for class without throwing out my back or shoulders. While there are some days I have to use a backpack (like when I have to bring my E-Bot Pro or musical instrument to class), it has saved me on many days. My backpack was purchased at Costco, but I found a similar one here.

Video camera

While my college has video cameras for students to borrow, I chose to bring my own video camera to school. I had purchased my camera about a year prior for a mentorship, and enjoyed doing videography in high school. I have used the camera surprisingly often, from doing class projects to practicing lectures to entering contests, along with helping many friends with film projects. In addition, I brought a tripod that fits in a bag stored underneath my bed, and a camera bag. My camera has been discontinued, but it is a JVC shock, drop, and freeze proof camera with a touchscreen.

Tons of stuff for my bed

I have a full list of the items on my bed here, and probably brought way more items for my bed than the average student, mostly because I spend a lot of time in bed recovering from migraines. As a result, I probably have one of the coziest beds on campus.

Urbio

The Urbio Perch is a wall storage system that uses command strips and magnets. I use Urbio boards on both my walls and on furniture- I attach pens and highlights to the side of my desk, toiletries to the side of my dresser, and I have four boards on my wall that contain my hair dryer, chargers, winter items, and important papers. Stay tuned for a post on how they look in my dorm room. Get it from Container Store here.

Echo Dot

This is a new addition to my electronics collection, but it has been an amazing tool. I wrote a full review on it here, but some of the many things I use it for include as a talking clock, timer/alarm, weather forecasts, calculator, news source, and especially for music. Get it here on Amazon.

While these are definitely uncommon items to pack for college, I have gotten a ton of use out of them and am glad I didn’t have to have my parents mail me these items later.

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.

10 Staff Members To Meet in College


Before I even started at my university, I had already talked to almost three dozen faculty and staff members on the phone and in person to ensure that I would not have any disruptions in receiving my approved classroom and housing accommodations.  Because of this, I was able to learn what staff members would best help me advocate for myself and that would help me while I was in the classroom or in my dorm.  Here are ten staff members that I highly recommend talking to before move-in or the first day of classes.  Please note that some colleges might have more than one person in these positions.

Disability Services Coordinator

Before I even applied to my university, I interviewed the Disability Services office multiple times about how they handled students with low vision (read more about my questions here).  Luckily, the department is very proactive, allowing students to set up accommodations before any problems sink in, and I was assigned a coordinator that specifically worked with students who were blind or had low vision.  The first staff member I worked with was a wonderful resource and helped me write out an accommodation plan that ensured I would receive all of my services  I can’t say enough nice things about them.  Read more about my experiences setting up a file here.

Assistive Technology Specialist

Assistive technology will be your best friend in college, and it always alarms me when students don’t embrace it.  I was an unique case when I arrived at my university- as one of my colleagues puts it, “most college students don’t come in knowing what assistive technology is, let alone wanting to study it.”  The assistive technology department can help with assessments, scanning in textbooks, and providing access to labs.  Some assistive technology departments also organize testing centers for students with disabilities.

Testing Coordinator

The testing coordinator helps make sure that students are able to take tests, quizzes, exams, and more in an environment where they can receive their accommodations.  Students can be referred to this department either by the assistive technology specialist or through Disability Services.  Testing accommodations are typically written in to the Disability Services file, but some testing centers develop their own student files.  It helps to talk to this person before the first day of classes because some majors may require a placement test for math, foreign language, or English classes.  Read more about my experiences with the testing center here.

Special Populations Housing Coordinator

This person is likely part of the committee that handles the special housing requests, and ultimately assigns students with special housing needs to their spaces.  When I had issues with not being approved for special housing as well as my first housing assignment, this person helped ensure that I received the accommodations I requested, and assisted me in finding an accessible room.  This was incredibly helpful with my housing this year, as I am able to stay in the same dorm room that I did last year.  Read more about my housing accommodations here.

Resident Director

This is the staff member that oversees the dorm building and actually lives there as well.  My resident director has been awesome about relaying important information and is a great person to talk to if there is a problem.  They also have helped me with navigating outside and preparing for inclement weather.

Academic Advisor

Each major has an advisor that assists students with picking out class schedules, and can also assist if there is an issue with the professor.  They also tend to be very honest about which professors embrace having students with disabilities in the classroom, and which professors are more hesitant.  Some departments may have advisors also be professors, while others have one or two people that are full-time advisors.

Student Support Specialist

For students who are apprehensive about a situation or potential situation, talking to a member of the Student Support staff can be a great help.  When I was worried about a situation with another student, the staff listened to all of my concerns and helped me develop a plan to ensure that I wouldn’t have to worry about the situation anymore.  This department usually has a confidentiality agreement in place, meaning that they do not have to report what is said in the meetings unless the student requests that they do so.

Security/Police

I made a note with university police that I use a blindness cane and have low vision, so that they would be able to assist me easier if I called.  I also made a note of what room I lived in on campus so if there was a fire alarm and I couldn’t escape, they would know where to find me.  One of my friends who has a severe medical condition gave police an abbreviated medical history, so they could assist emergency medical staff in administering care.

Student Health

While I didn’t work with them until I had my first visit, having a copy of your medical history and health insurance with the Student Health office can be invaluable, especially if you have a chronic illness.  I have a note in my file that I have Chiari Malformation, chronic pain, chronic migraines, and low vision.  Read more about my experiences with Student Health here.

Mail Services Coordinator

This may seem random, but talking to the Mail Services coordinator is very important.  With my low vision, I cannot use combination locks, so I contacted this person to ensure that the mailbox assigned to me would be one that uses a key.  Another one of my friends contacted them to ensure their mailbox would be accessible to someone using mobility aids that couldn’t bend over.  In the event that it’s impossible to go get mail, you can contact the coordinator to authorize someone else to pick up mail as well- I authorized my resident advisor to get my mail after I was in a car accident, and other friends have authorized me to pick up their mail while they were in the hospital.

While not everyone may need to talk to each type of person on the list, I have been grateful for the resources that each of these people have provided me with.  They all have helped, in one way or another, to ensure that I am thriving in the college environment.

Why To Take Virtual Classes in College

Living with chronic illness, it can be very difficult to get out of bed, let alone get to class. While I am able to push myself to get to a majority of my classes, sometimes I just want to be able to do school work without having to move too much. Because of this, I have chosen to incorporate virtual classes into my college schedule, and it has helped me a lot in managing my time and improving my grades. Here are some of the reasons I appreciate virtual classes, and my tips for success. As of spring 2017, I have taken 13 virtual classes in four semesters of college.

Better scheduling

I’ve found that there were a few classes that either were held extremely early in the morning or late at night. Since my vision fluctuates throughout the day, these class times are not a good fit for me. With virtual classes, I can work on assignments while my vision is doing well.

Get ahead easily

Many of my professors post several weeks of class work in advance, so if I am feeling well, I will complete the assignments early,  in case I wind up feeling not-so-well later on. Professors also seem to be more flexible about students turning in late work if an emergency comes up- I was able to easily get extensions on assignments when needed.

Take classes from anywhere

The only reason I got credits my first semester was because of virtual classes. I had two separate medical emergencies happen in the span of November 2015 and spent over six weeks at home (several hours from school) recovering. Basically, I disappeared right after midterms and only came back to school because I had to take a final exam. While I was recovering at home, I was able to continue with my virtual classes and stay on track, and I didn’t even tell my virtual teachers how sick I was until after the class had ended. With the flexibility to take classes anywhere, I was able to do very well that semester.

Use your own assistive technologies

With virtual classes, I can use all of my own technology which is fine-tuned to my preferences. I also can learn which devices, applications, and extensions work best for certain classes and how to create accessible documents. Bonus- I don’t have to balance five devices on a small desk.

Less “fluff” work

One of my friends was often complaining about having to do group projects and other frustrating assignments in one of their classes. I took the same class virtually and only had to worry about reading material, answering three questions a week, and writing a total of two essays. That was it! I didn’t have to worry about investing a ton of energy into a general education class, and I could spend more time on my other classes.

Get used to working independently

One of the common complaints about virtual classes is that there is no one to reinforce deadlines and other materials. This is actually a good thing, as no one is going to be around to remind you of every little thing in the real world. Learning to budget time and research topics online are important skills to have.

You won’t be seen as a disability

While it is important to share your disability services file with your professor, you don’t have to worry about sticking out in class discussions because of your disability, if you are worried about that. In one of my classes (that I dropped immediately), lots of students and even the professor were staring at my blindness cane like it was some type of foreign object and asking a lot of strange questions. In virtual classes, no one can see you.

Take tests in your own environment

Not all virtual classes are like this, but being able to take tests and quizzes in your own testing environment is an awesome advantage to taking these types of classes. I always appreciate being able to take a quiz from the comfort of my own desk, or to take a test with one of my pain relief wraps on.

Adjunct professors

Professors can teach from anywhere in the world, and this is often beneficial as the student is able to learn information from someone in the field, or get a global perspective on a topic. For my global understanding requirement, I had a professor who had travelled to many different countries and was able to educate the class on many different topics related to global health and policy. Another one of my professors was popular at another university from halfway across the country, and we got to take a class with them. I’ve even had professors living in other countries.

Learn more about yourself

This may seem weird, but I have learned a lot about how I access materials and learn through taking virtual classes, probably because I rely on technology a lot. With the ability to take a variety of different classes, I have been able to learn how I process information best, and which technologies are most helpful. I know that virtual classes will help me a lot in the future as well, especially since I want to work with accessibility.

Virtual classes have been an amazing resource for me. I am grateful that my college has really embraced virtual education and that I have been able to take almost any class that I want.

How To Create A Disability Services File

I chose what college I was going to attend during my junior year of high school, a year before I even submitted my application (read more about how I made my choice here). The Office of Disability Services was/is very welcoming and answered all of my questions. They have a dedicated staff member that handles all the low vision/blindness cases, and they know exactly what accommodations I need and what to ask for. I am incredibly lucky to have so many resources available to me, and I was excited to be part of this university.

Since IEPs expire the moment the student graduates from high school, it’s important to meet with Disability Services before school starts to ensure that the student continues to receive services in college. Most of the accommodations listed in an IEP can continue to be used if the student adds them in their Disability Services file. One thing that does transfer to college is 504 plans, though you still will need to create a file to receive services. It is highly recommended that you convert your IEP to a 504 plan before you graduate, something I did two hours before my graduation (though giving your case manager advanced notice is a must). Here is how to create a Disability Services file with your school. This also applies to students attending community/junior colleges, though the plan might not transfer when the student moves.

Start Early

I investigated what services were available to me before I applied to the school. While visiting other colleges, I planned my visits around interviewing staff members from the Disability Services offices in a one on one setting, spending thirty minutes or more at each interview. If your accommodations will not be met, this is not the school for you. The important thing for the student is to be proactive, not reactive, and that is also true for the Disabilities Services office. Some colleges won’t help you until you are in trouble, and it’s better to avoid the problem than to have to figure out how to solve it later (read more about scheduling here). Don’t wait until there is a problem in a class to open a Disability Services file. I opened mine while I was still in high school after I had received my acceptance letter and committed to attending in the fall.

Get notes from your doctor prior to the Disability Services meeting

If you bring a doctor’s certification that you have a disability, you can set up the file at your first meeting with Disability Services. Usually you can find the forms the doctor needs to fill out on the school Disability Services website. My school required a recent ophthalmologist report, which I brought with me. Some schools may also require a physical, but mine did not.

Bring all documents you think might be important

I met with Disability Services in April to set up my file that would be used starting in the fall semester. I brought in my current IEP, my prior 504 plan from eighth grade (since I wasn’t converting to a 504 until the last day of school), and documents from my ophthalmologist that described my diagnosis- read more about collecting documentation here. Other helpful documents to bring, if available, include Department of Blind and Visually Impaired case files, assistive technology evaluations, orientation and mobility files, occupational therapy assessments, medical diagnosis from other doctors (i.e neurologist) and similar documents. All of my papers were in a giant binder so I could easily reference them during the meeting (pro tip- get a rolling backpack to carry everything around).

Know what accommodations you need the most

For me, having access to my assistive technology devices, receiving digital copies of assignments, and preferential seating were the most important accommodations. I made sure those were the first I mentioned to Disability Services. Other accommodations in my file include time and a half on tests, extended time on assignments when requested, copies of notes, using a word processor for written assignments, large print on handouts, and the ability to attend class remotely if needed. Once I was on campus and worked with Disability Services, I added additional accommodations, such as noting that I would be using a blindness cane (yes, I did encounter a professor who was very confused over my cane).

Ask if your school has a disability testing center

My school has a multiroom lab where students are able to take their tests in a quiet environment with their assistive technologies. I had to fill out a separate form for these accommodations. I receive time and a half on tests, a laptop with ZoomText and JAWS, use of my E-Bot Pro, reduced light, and use of a word processor as well as a calculator app on my phone. An accommodation made available to everyone is the use of earplugs during tests as well as a white noise machine to help drown out background noise. This testing center is invaluable to students with a range of disabilities, not just sensory ones.  Read more about the disability testing center here.

Ask about other services for students registered with Disability Services

My school offers a writing center for students with disabilities who need extra help. I have not needed it, but students who struggle with writing have greatly benefited from these services. Ask if there are other tutoring opportunities or groups that help students with disabilities.

Request special housing, if needed

The sooner you request this, the better! Housing arrangements tend to fill up quickly. My freshman year, I lived in a single room that was adjacent to the resident advisor’s room so I could reach her quickly if there was a problem. This year, I live in a handicapped accessible apartment (on campus) with my own bedroom and I am able to navigate easily around the apartment, as well as being able to get to my classes and, most importantly, the dining hall. In order to get special housing, my primary care doctor had to fill out a form to certify my disability, which was in addition to the form to certify me for Disability Services.  Read more about disability housing here.

Get a referral to the assistive technology specialist or department

At my school the Assistive Technology department is different than Disability Services. By receiving a referral, you can access services such as enlarged textbooks, assistive technologies, computer labs with built in accessibility software, and more. This is the most important department for me because while Disability Services can identify a problem, Assistive Technology solves it.  Read more about staff members to talk to before college starts here,

Make sure your file is ready for the first day of classes

Get copies of your accommodations sheet (which Disability Services will provide) as soon as possible to pass out to professors, and know how to explain the accommodations as well (post on that here). Be sure all your testing accommodations are set before the first exam. Don’t wait until you fail to set yourself up with the tools you need to succeed.