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College and Chronic Illness: Talking to your Professors

Another title for this post could be learn from my mistakes. My freshman year I did not inform my professors of my chronic illnesses until I am in the ER and could not make the deadline for two papers or to the respective classes the next day my first semester. Thankfully those professors were very understanding. You would think I would have learned but second semester I waited as well and found myself on the bathroom ground working on a final when I should have been in the ER because that professor was considerably less understanding although maybe she would have been had I mentioned something before that night. Anyway back to the topic at hand.

From my first ER trip in college, too bad it was far from my last...
First off as I mentioned in my previous post make sure you go to your campus disability office with a letter from your doctor explaining your symptoms and/or illness, what accommodations you need (my school asked if I need anything not on the list so it may have not been necessary but better to be over prepared than under), and make sure it is on official letterhead. Then they should be able to set you up with an adviser and put your accommodations into place.

Next the week before your classes start contact your professors by email. My school as an online portal for anyone registered with the office of disabilities that I can use to send a letter informing my professors of my accommodations. I can even customize the letter since I don't think my professors need to be aware my housing must have a kitchen and a private bathroom. Once they read the letter the system also sends me a notification to let me know.

Then I like to talk to my professors right after the first class. However one reason I do it so soon is I am typically connected to pumps that have a tendency to beep at the least convenient times, but I would say you should approach your professors within the first week or two of the semester. Depending on how much time you need to discuss your accommodations you may want to just do talk right after class or set up a time for you to talk during business hours.

Tips for the actual talk- first off remember you only have to share what you want to. The professors do not need to know why you have accommodations. I am a pretty open person coupled with the fact I actually have tubes coming out of me I have found it easier to give simple explanations of my medical condition but it you don't feel comfortable doing that do not feel that you have to or should. I like to point out which accommodations I am most likely to actually you (,my adviser set me up with a couple I probably will never need but said it was easier to start with them then add them later). I then reassure the professor I do my best not to use my accommodations and if I am out (one of my accommodations is to have more absences than generally allowed) I will contact a fellow classmate.

As a follow up I do try not to use my accommodations unless I absolutely have to and then I try to be as proactive and responsible as possible. I stay in constant contact with my professors, if I miss class I email them (in advance if possible), if I start to flare up a few days before an assignment is due even if I think I can make it in time I email a warning that I may need an extension. Once a few professors know you will not take advantage of your accommodations word will travel. Chances are you will encounter difficult professors once in a while but it helps when you have a department of professors or two that know you and can attest to you as a good student.

If any readers have any questions or their own tips please comment!

College and Chronic Illness: I am on Campus, Now What?

The first few days after moving in can be overwhelming for any college student but having a chronic illness can take it to a whole new level. Here are some tips to make your first couple weeks on campus successful-


  • Set up your medication at a close to campus pharmacy. If there is a retail chain that is both near your school and your home I suggest going there over student health. By using a chain pharmacy it makes getting refills at home or at school easier. 
  • Set guidelines and boundaries with your roommate(s). This is a good time to have a more in-depth conversation about your health and explain your chronic illness. Communicate how that may effect living with you, such as what times/how much sleep you need, if you have to be extra careful about being sick due to being immunosupprested, allergies, etc.
  • Before classes start walk through the campus and buildings to see where all your classes are. Make sure you know how long it takes to get to each class without having to rush of stress out. Nothing is worse than being late on the first day.
  • Once classes starts make sure you talk to your professors about your health issues and how that may affect you, remember you don't have to disclose why you have accommodations if you don't feel comfortable. My school sends an email to my professors that I control, like which accommodations appear on the letter sent to the professor and when it is sent. I like to sent it the week before classes start. Then after my first class I go up to my professor to either talk about my accommodations or set up a time during their office hours to talk about them.
  • Remember your self care routines! Try to stay on somewhat of a schedule, remember your meds, get enough sleep, and eat something that almost resembles a veggie. I know this sounds basic but especially in the first few days/week after move in but before classes start days and lights tend to get messed up and all norms that keep your body functioning get thrown to the wind.
Now take a deep breath and good luck!




Good Old Freshman Dorn!

A Pre Move In Check List for Chronically Ill Students

As I embark on my senior year in just a few weeks I realize I have almost made it. At this point in my life of balancing being a typical college student and battling for my health every day I feel uniquely qualified to advice incoming freshman on how to do college without totally neglecting your health.

Things to do in the weeks leading up to your move in date-
  • Decide on if you are going to see specialists as well as a PCP by your school or if you are going to continue to see your old doctors. Many factors may effect this such as how far away your school is to your hometown, if your new school is in a city (making it more accessible to good doctors), and how often you plan on visiting home. If you do plan on establishing yourself with new doctors you should be setting up appointments now because waiting list can be long and you want to be an established patient ASAP in case you have an emergency. If you do not plan on having a doctor near your school make sure to research student health and see what they are and aren't able to handle and if you can see a doctor when you get to campus to establish care. 
  • In case of an emergency figure out what hospital near your school can handle your case. I made the mistake on my first ER trip to go to the hospital affiliated with my school even though it was not the best for my particular situation. The closest may not always be the best. If you are going to see doctors in the immediate area know what hospitals they work with.
  • Talk to the office of disabilities. If you qualify for disability housing you obviously need to set that up before you move in (also know things like Celiac may qualify you for disability housing). Otherwise this may be able to wait until your first week on campus.
  • Figure out how your class schedule will work with your health. If you have morning stiffness you may not want to take an 8AM. If you have problems sitting for long periods of time you may be better off taking shorter classes that meet more often. If you cannot walk fast/easily do not schedule back to back classes that are located on opposite sides of campus.
  • Start a conversation with your future roommate. Depending on how sick you are and your daily routine it might be a shock to someone else who you end up living with. I just told me roommate my diagnoses prior to move in and had a bigger discussion when we met in person.
I am going to try to make this a series about chronic illness and college so let me know if there are any other topics you would like me to cover.

Freshman Joan Wishes You Luck!

Sjogren's Awareness Day

Today is Sjogren's Syndrome awareness day. Unlike other disease you will not see a lot of facebook profile pictures with a ribbon overlay or products in the grocery story with ribbons on their labels to announce a percentage of proceeds going to research. The majority of people diagnosed with the disease will probably stay silent. I however refuse to be one of them.

Sjogren's is one of the most common autoimmune disease, effecting an estimated 4 million Americans, yet most people have never heard of it and most of the people who have do not truly grasp the effects of the disease. I was one of these people until recently. All I knew was Sjogren's is an autoimmune disease that cause dry eyes and mouths and possible some minor joint pain. I did not know that is could cause enough joint damage to result in surgeries, I did not know if could cause autonomic neuropathy to the point of needing a feeding tube and central line.

When I was diagnosed with Sjogren's 6 weeks ago I was shocked because I did not know it could cause the type of destruction my body has been through. And that was just the problem, no one else seem to realize it either, especially at such a young age, after all Sjogren's is supposed to effect women in their 40s and beyond, my body missed the memo. Since its so rare no one ordered the one test that could tell us exactly what was wrong and why my body had been self destructing. 

Turns out dry eyes and dry mouth are not always the first symptoms of Sjogren's, sometimes they are proceeded by joint pain and/or neurological manifestations. Turns out Sjogren's can and does effect children. After I was diagnosed I discovered it turn's out Sjogren's can be a very serious disease.  

Maybe my story can help others, create awareness.

A New Diagnosis Means a New Treatment Plan

A little over a week after Sjogren's was confirmed I had an appointment with my rheumatologist. My head was filled with questions and possibly a little too much online reading (however I have graduated from google and now use my college's online database to read medical textbooks). I had a list of questions on my phone I wanted to ask and did get to most of them. However the ones I missed was due to me already feeling overwhelmed and wanting to focus on specific things, not because the doctor rushed me which is a nice change.

The most important part of the appointment was figuring out a treatment plan. My rheumy asked what the most pressing symptom is and obviously it is the autonomic nervous system issues (autonomic neuropathy). He thought the best treatment option was a medication call azathioprine (Imuran), which is an immunosuppressant drug. However before I could start I need a blood test to see if I had the enzyme needed to properly metabolize the medication (10% of the population is deficient which can lead to bone marrow failure).

After 10 years of symptoms I was so ready to start actually treating the thing that has been making me so sick that waiting a couple more weeks seemed like agony. Thankfully the blood test came back positive and I was able to start azathioprine almost a week ago. We also upped my prednisone dose. While that was the last thing I wanted to do and have also really been struggling with POTS thanks to the heat and if the root of the problem was Sjogren's prednisone could help and it really has.
If getting better means spending a few nights on the bathroom floor I can handle that

All the medication has been a struggle to adjust to but I am getting there. I have dealt with some side effects from the azathrioprine which have just reminded me of the really bad days of gastroparesis prefeeding tube. I am hoping they will get better as time goes on but I an increasing my dose Friday so that should be interesting. The increased prednisone dose has helped with POTS symptoms and gastroparesis symptoms when the azathrioprine isn't making me too sick to eat much. However I have been a bit wired and irritable from it but both those things seem to be getting a bit better as I adjust. Now I just have to wait a few weeks and hopefully the autonomic neuropathy will start to improve.

Not Fitting in to my Disease Community

About a year ago I was at a rheumatologist appointment and we were discussing a new symptom, I don't even remember which one it was, my rheumatologist said Lupus could cause it but for what ever other reason I did not have Lupus. She said "Usually not having Lupus is a good thing, but at this point I am sure you just want a name." In that moment I finally felt like someone finally hit the nail on the head.

I never wanted to have a lifelong possibly life threatening autoimmune disease. Yet that was not a choice I had. As my symptoms progress and have had more and more of an impact on my life and caused me to grow up in a way that has made it hard to relate to people my own age sometime I earned for a group where I fit in. As the picture of what I had planned for my future changed I felt a need to talk to someone going through the same. Every time someone asks about my feeding tube, central line, and any other parts of my health I just wanted a simple answer.

If I had to live with all the challenges and complications my health has caused I wanted a name as to why. I wanted support groups and walks. I want to participate awareness campaigns and to read about the latest research. If I was going to continue to fight with everything I had how could I fight against an unknown villain?

As I mentioned in my last post I had confronted the fact I might not get that overarching diagnosis. I guess I could have live my entire life that way but there was a part of me that would always yearn for a disease community to relate to a fit in to.
Look! Such a Pretty Awareness Ribbon!

When I was finally diagnosed with Sjogren's I thought I would finally have my community, my support groups, the research, and the walks, all of it. However when going on Facebook groups and forums, even looking through research studies I did not have the sense of belonging I had expected. I had read that Sjogren's generally effects woman in their 40s and 50s, I guess I just did not understand quite how few people my age had it. I knew my ANS manifestations being so severe that I have a feeding tube and central line where not common but I did not realize I would only be able to find one other person with a feeding tube in support groups of thousands of Sjogren's suffers, and no one else seems to have a central line. One person even told me I was too sick for it to be caused by Sjogren's, it must be a misdiagnosis because my level of severity was not possible. Part of me thinks she was upset to think that a disease we share can be so damaging.

Once again I cannot seem to relate to anyone else in the community. I am so much younger and so much more severely affect it seems. It is odd because I have never thought of my self as too young to be sick or even sick really. I am me and my health is just not ideal. Unlike before I feel a little more empowered. I can become an advocate and show people all the ways Sjogren's can affect your life and that it can in fact be a life threatening disease. I think there must be other Sjogren's suffers who are like me and I plan on going out to create a space for them.

When I Stopped Looking for Answers I Found One

When I started this blog back in high school I was a teenager with chronic pain that I wanted a diagnosis for. I want someone to know what was happening to my body so we could fix it. I did not realize the journey I had in front of me and did not understand that not everything could be fixed. I spent a lot of time going from one doctor to the next though and it started to consume my life.

At some point it clicked in my head I was not actually helping myself by being so focused on answers, especially as more issues developed. I finally shift my focus to making the most out of life while living with my symptoms, I started to look at treatments from a quality of life perspective with the realization that my quality of life was more important than pin pointing exactly what was causing my body to fail so spectacularly. For a few years that has been my focus. I have actually had a few doctors comment on how impressed they are by the fact I am not super focused on answers, although I have always found that an odd complement. Yes it would be nice to have something simple to say when people ask what is wrong with me but it is not the be all end all. Of course you always find the answer after you stop looking.

A few months ago my pediatric rheumatologist thought it might finally be a good time to transition me to an adult rheumatologist. I was stable from her perspective and about as stable as we would probably get for a while in terms of my overall health and she wanted to see what they would say about my case. She referred me to a young adult rheumatology specialist.

I was a little apprehensive going into this appointment since I have had such bad luck with adult specialist so far. Both my peds rheum and PCP said how great this guy is and I trust their judgement but instead of taking as a comfort I took it to mean if I don't like this guy there is no one I will like. Thankfully I was very impressed. He went through all my past medical records with me to make sure everything was right. He told me everything he was doing and why. When he went on the computer he showed me the screen to see what he was doing. After examining my cuticles for autoimmune damage he not only showed me pictures of what the capillaries were supposed to look like and what mine looked like but he handed me the microscope he was using so I could look at my capillaries myself. He spent 1.5+ hours with me. By the end of the appointment I had the UCTD diagnosis I talked about in another post.

I also mentioned one of the test he ordered, a lip biopsy. It seemed like this was the test that was never going to happen. The day it was first scheduled for I ended up being inpatient for a port infection, Then the ENT who does them was out of the country for a month and they didn't have her schedule out for when she would be back. Finally I got it rescheduled and then it was cancelled because someone else needed emergency surgery. I was really hesitant to take any time off work for this procedure since I had little hopes of it actually showing anything. I explained that if I could not get in before I started my job I would wait till September and they managed to squeeze me in the Wednesday before. Much to my surprise the following Saturday I got an email saying I had a MyChart message. I opened the app on the subway to discover an email from my rheumy saying the biopsy was positive and I had Sjogren's Syndrome.
Cause Post Lip Biopsy I Deserved a Smoothie

When I least expected it I finally got a diagnosis that may explain every thing.