Disability Accommodations & Chronic Illness: Knowing Who to Ask for Help

Hey Everyone!

I am about a month and a half away from completing grad school and being done with classes forever (internally screams for joy), but before I leave the realm of academia forever, I thought I’d impart some advice on how, and more importantly who, to ask for help when your illness inevitably conflicts with your classwork. Depending on how you navigated your way through high school with your illness—having an understanding with individual teachers who were “in the know,” keeping your illness to yourself and just soldiering through on your own, or having an official 504 plan in place with the administration—it might inflect your decision on how you wish to proceed in university.

Before you endeavor to keep it all under your hat and only disclose your illness to select professors when you’re too sick to turn something in, I urge you to meet with the Disability Services Office (DSO). Because here’s the thing, professors are under no obligation to give you an extension on an assignment just because you show up in their office looking like death warmed over with a pitiful back story as to why you didn’t complete that 2,500 word essay on the “Economy of Food in The Christmas Carol.” However, if you have accommodations in place through the DSO, they are obligated to help you out—to a point, but I’ll get to that in a moment.

Registering with Disability Services

This is something that should be done as soon as possible upon starting school. Actually, if you want to get a head start and contact someone in the disability office before the start of the semester that would make things easier for the both of you. That way they can give you a heads up about what materials (proof of illness, doctor’s notes, etc.) that they require to formally enroll you in the DSO. Set up an initial meeting.

Setting Up an Accommodation Plan that Works for Your Needs

Depending on your illness, your individual needs, and some educated guesswork, you and the DSO can construct a plan for accommodation. I’ll list a few of my accommodations as an example. I had the accommodations in place JUST IN CASE. When I started university I was relatively healthy for a Cystic. So, I had the plan in place to be enacted when/if I had a flare.

• Allowed to miss class and be late due to illness.
• Allowed to eat/drink in class to maintain weight.
• Use the notetaker service if missing class for an extended period of time.
• Extension on assignments due to illness.
• Separate exam taking accommodations with access to a washroom.
• Designated disability parking spot on campus.
  • Centrally located to ease burden of walking.

Notifying Your Professors of Your Illness and Your Accommodations

This will vary depending on your school. Some DSO offices notify your professors on your behalf. Others give you an official accommodation letter that you are expected to hand deliver to your professors. ASK YOUR DSO OFFICER WHICH WAY THEY DO THINGS. I didn’t do this my first semester of undergrad and just assumed that they let all my professors know. So, when I got horribly sick and went to my prof to ask for an extension and said: “So you know I have Cystic Fibrosis.” He was like: “No. But I figured out something was wrong, you cough during every class.” (hides head in embarrassment) I was operating under the assumption all year that all my profs knew. BIG MISTAKE. He was great about it, but things would have been much easier had I known to give him my accommodation letter to begin with.

On that note, delivering this letter can be a little nerve-wracking, especially if you don’t like to talk about your illness. Don’t worry, after four years (six for me—oof!), the awkward after class hover so you can get the prof alone becomes a well-practiced maneuver. Most professors are very understanding and will have no problem helping you out.

However, there is a caveat. Disability accommodations are not to be abused and are not a free-for-all pass. When you get accommodations, you also sign a waiver stating that the university expects a certain academic standard to be met, even with accommodations. You can’t do zero work for a course, or miss 75% of the classes and still expect the professor to pass you. I have no worry about any of you in regards to this, because you’ve already shown the drive and fortitude necessary to go to university in the first place.

Extended Deadlines, Incomplete Classes, and Graduating on Time

Some professors although forced to “accommodate” your needs because of the DSO, will not provide much in the way of real help. I’ve had professors who gave me an extension while I was in the hospital, but still needed it “within a week.” Or, I’ve had professors insist that I attend class with my oxygen tank or risk not meeting the minimum requirement of attended classes for an accelerated summer course, because I knew I would be missing a class the following week. These professors technically accommodated me, but in reality I bent myself out of shape trying to meet their “extended deadlines” because I am too stubborn to admit that I couldn’t get it done. I was later told by one such professor that she was impressed by my work ethic and the only reason she had given me a hard time is because other individuals with accommodations had abused her good nature previously. My best advice: be willing to work and be up front with your professors. Most will appreciate that you are TRYING to get them the work, and be more willing to work with you regarding deadlines.

Navigating what type of extended deadlines work for you can be tricky. Some professors give you an exact extension date, others leave things completely open ended. I am a person that needs hard deadlines or my procrastinating brain will just languish uselessly. But, having a hard deadline that is too soon for your body to cope with doesn’t help anyone. So, I’ve finally figured out that telling your professor a tentative deadline that you “expect to have it back to them by” gives you a kick in the pants to get it completed, but—if you don’t meet that exact date—won’t result in an exhausted body due to all-nighter writing sessions while still recovering.

Sometimes you just can’t get it all done. You are too sick. You’ve been in the hospital too long. Or, you got sick too close to the end of term. That’s when professors bring up the topic of Incomplete Classes. At my school, that meant I had the entirety of the next semester to finish up my assignments and technically “complete the course.” So, I could even have audited classes with the 2nd semester students in the same class. I did it once. Let’s just say it’s a lot of work and technically you are on academic probation for the interim (which can mess up financial aid stuff so be wary!), but it gave me the time I needed to get back on track. Even if finishing up last semester’s work while taking new classes seemed impossible at times.

Finally, graduating on time. I know everyone wants to graduate with their friends and in the standard four years. Illness robs us of so many experiences, marching across stage with my girls was not something I was going to let it take from me. So, I promised myself I would graduate in four years—and I did. But I ask myself now, was it worth it? When I graduated from undergrad, I was down to 82 pounds and on IV antibiotics. Instead of starting my job search with the rest of my class and entering adult life, I went home for a year. I laid on my parents’ couch and let my mom fatten me up. It was great, but it should not have been necessary. School is supposed to help you on the way to your future life. There is no point if you almost kill yourself just trying to get through it.

So, if you need help, ASK FOR IT. If you’re sick, TAKE TIME OFF. If you need to take a gap year and recover, DO IT. School will always be there. Your health won’t.

And remember, take it one breath at a time.

Edited HEADER IMAGE “Not Every Disability Is Visible” COURTESY OF Ian Ritchie Foundation

Phone Pharma! A Pill-Popper’s Guide to Refilling Prescriptions

So, you’ve taken my advice and popped your pills. In fact, you’ve taken them all. Now, you have to order more . . . Shit. That means you have to pick up that thing you spend all day playing solitaire on and actually talk to another human being. I know, I know. It’s a scary thought. We millennials text so we won’t have to talk to other people. However, once you’re done hyperventilating into a paper bag, check out my quick tips on refilling prescriptions below. It’ll ease the pain somewhat, I promise.

1.) Keep Track of Your Supply  This one is pretty simple. When you are filling up your pill keepers each week (or two weeks, or month, depending on which kind you have) just make a mental note of how many pills you have left. If it helps you to write the exact count down and how many days you have left before you run out, do so. Being proactive and ordering things BEFORE you run out is better than being forced to do without because the pharmacy can’t refill it right away.

2.) Know Which Drugs Come From Which Pharmacy  You’re going to start getting annoyed with me, because I’m instructing you to make yet another list. You can either create one entirely separate from The (Original) List, or just add on to the existing one. However, I would advise that you make a new one because a too-large list is unwieldy and eventually counterproductive. Jot down the names and numbers of the various pharmacies, doctors, insurance carriers, etc., that run your life. Make note of what drugs come from what pharmacies—whether it’s your local Walgreens or a specialty pharmacy—and possibly which ones require prior authorization from your doctor. (See, I said you would need the doc and insurance numbers, too.)

3.) Call Them  Right, here’s the hard part where you have to pick up the phone . . . Just kidding. Many pharmacies now have online refill capabilities. You create an account with them, usually linked to an email account, and when you sign in you have access to a range of options. You can look at all the prescriptions they have on file for you, refill your prescriptions with the push of a button, and even set up automatic refills. I have an account with Walgreens.com, and I have it set up to send me emails and text messages regarding refills, delays, and pick-up notifications. However, some specialty pharmacies may not include this service. The phone is not your enemy! So, grab your stress ball and dial the number.

PHOTO “Fighting Phone Phobia” COURTESY OF Bob Lassiter

4.) Talk To A Person  Congratulations! You’ve taken the first step of contacting the right pharmacy. Now, I’m assuming you’re talking to a human being after listening to a robot telling you to pick an option number for about 20 minutes. Sorry, I know forewarned is forearmed and all that, but you didn’t want to pick up the phone in the first place. I wasn’t about to tell you it takes extreme levels of patience to navigate your way past the menu. Now, you’re talking to a real live person. Usually, they need you to list off name, address, date of birth, yada yada. Once they are finished confirming that you are, in fact, you, it’s time to order.

5.) Set Up Delivery Type That Works For You  Once you’ve placed your refill order, the person on the other end of the line will usually begin setting up delivery options for you. Sometimes, you can have your specialty medication shipped to a local affiliate pharmacy and you can go pick it up there. In other cases, it’s simpler to just have it shipped directly to your home. You then have to make a decision about whether you want a signature to be required or not. It’s medication, so usually this is a good idea. However, what happens if you aren’t home when they deliver the medication? What if it requires refrigeration upon delivery? Is it better for your situation to have it left on your front step, so you can get it when you get home? Do you trust your neighbors not to steal your stuff, I guess? I live in an apartment complex, so all our packages are signed for by the front desk. And they are kind enough to put any boxes that require refrigeration into the office fridge for me, or—if I can’t get home before the office closes—someone will pop upstairs and put it on my counter.

6.) Don’t Hang Up Just Yet!  Wait! Before you put down the phone and shudder about the trauma I just put you through, ask the customer service representative about refill reminders. Some companies have automatic reminders that robo-call you a week before you’re due to refill your meds. (Most companies prefer to have at least a week of processing and delivering time, FYI) Others can take your email address or cellphone number for the same purpose. A word of caution about the automatic reminders. I have one particular company that would robo-call me almost every day, multiple times a day, because I hadn’t requested a refill in a while. (I was on vacation, so switched up some of my rotating meds for ease of travel)

Don’t be afraid of the phone. Being on top of your refills and ordering will pay off in the end. After all, no dedicated pill-popper wants to be without her meds.

And remember, take it one breath at a time.

P.S. If you have any say in which specialty pharmacy you order from (it varies at different insurance providers), I suggest you do your research on forums and in groups related to your illness before choosing. Some companies are a real pain in the ass to work with . . . *cough* Ack. *cough* Creed. *cough* D’oh!

HEADER IMAGE “Doctor Stock Photo” Courtesy of negativespace.co

 

Tips from a Dedicated Pill-Popper

Hey Guys!

Ever felt like you’re drowning in pills? Having trouble managing the sheer volume of medication you are expected to ingest every day, let alone remembering which pills need to be taken when, with what, or better yet what NOT to take together? As daunting as it might first appear, taking medication properly is the cornerstone of chronic health management. If you don’t take your pills, you’re not exactly “managing” anything are you?

So, here are some tips to get your pill popping skills en pointe!

1.) Make a list! Now this may seem self-evident, but taking the time to create a detailed list of your medications that you keep UP-TO-DATE will only help to simplify your life in the long run. I know what some of you may be thinking. “I hate lists. I have a great memory. I won’t forget.” Well, as someone who has been taking medication since birth—pancreatic enzymes every time I eat, for example—let me tell you, YOU WILL FORGET. So, unless you have the eidetic memory of Dr. Spencer Reid, write it down.

2.) What to include on your list? You really should have two lists: a current list that you refer to when you are refilling medications; interacting with doctors, insurance providers, pharmacists, and specialty pharmacy personnel (they will ask you what you’re taking, even if the recitation takes 10 minutes because you have 3 pages worth of pills); and a master list that lists every medication that you have taken at some point. This master list should also include what you were taking the medication for, why you discontinued it, and any adverse reactions you had to the medication.

• This may seem excessive, but having suffered through ciprofloxacin-induced diarrhea several times because I was too lazy to keep track of what antibiotics I had been prescribed previously, and had thus made me ill, I can attest to the life saving—or gut-saving—power of the master list.
• Also, the master list is a great resource for remembering allergies. Many allergies develop due to repeated exposure, therefore what was initially a mild reaction could turn into potentially deadly anaphylaxis the second go-around.
• The current list should be detailed in its own way: when medication should be taken, if it should not be taken with certain foods or other medications, etc., if the medication is not in pill-form—or is used for break-through symptoms—how often it can be taken in a 24 hour span. An example of this would be an asthma inhaler.

3.) Digitize It! Now, you’ve taken the time to write it all down. However, I doubt many of you want to carry around a sheaf of papers detailing that time you had ringing in the ears and an itchy arsehole due to medication X. So, the next step is to input the most relevant parts of the list into a word doc, excel spreadsheet, or, my personal favorite, a pill tracker app. The iPhone iOS software now comes standard with a Medical ID in the Health app where you can keep medical conditions, medical notes (e.g. you have a port-a-cath), allergies and reactions, medications, and emergency contacts. Or, you can surf the app store for one that fits your specific needs. I have a CF specific app called My Fight Against Cystic Fibrosis that allows me to set up daily pill reminders.

4.) Organize Your Pills: Choosing the Right Pill Keeper   Pill keepers come in many shapes and sizes, but finding the one that works for you is really dependent on your pill regimen. Are you taking pills once a day? Twice a day? With every meal? Every 4 hours? Are your pills small or large? Refer to the list. Then, put the right pills in the right slot. It’s pretty simple.

Types of Pill Keepers

Photo Courtesy of tr0tt3r @ flickr.com

5.) Take Your Pills. You’ve done all the hard work of organizing them. Now, you just have to take them. Even with all this preparation, you are still going to miss a pill on occasion. Realize you’ve done so, and then let yourself off the hook. However, if you find yourself missing pills more than you are taking them, I would revisit the pill tracker app. Maybe you need a more in-depth app that forces you to put in that you’ve actually taken the medication, rather than just beeping when you need to pop a pill. Find out what works for you, and let me know what tips and tricks you’ve found success with!

And remember, take it one breath at a time.

Header Image “Pill-Withdrawal.jpg” Courtesy of http://www.thegooddrugsguide.com