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Preparing to Fly with Complex Medical Issues



One of the most stressful things to do is travelling, now add some needles, medical liquids, and a suppressed immune system to that and flying goes from stressful to down right scary. As I prepare to fly to the rare patient advocacy summit taking place this week in California I  figured I would share what I have found works the best for me when traveling.

Before my first flight with a feeding tube I looked up the TSA policies on medical liquids. Basically as long as you notify them while going through security and separate them from the rest of your things you should be allowed to take them through without issue. No doctor's note required. Same goes for needles and syringes and inject-able medications. You may want to print this policy out or have easy access to it on your phone in case you encounter any issues although I have yet to have a problem.

A few days before your flight call up TSA cares. They will set you up with a TSA specialist to help you through security. This is the first time I am using this service since a friend recently told me about it so I don't have mush to say about it yet but the woman who set it up for me on the phone was lovely. She also double checked the medical liquids and injection policies for me.

If you are like me and have to travel with a ton of medical supplies make sure you pack them in a separate bag than the rest of your stuff because airlines can not charge you to check a bag of all medical items. When you check it make sure to explain what it is, sometimes they will double check to make sure it is but generally I find they take my word for it.

On the day on the flight make sure in you carry on you have enough medical supplies for at least 24-48 hours in case your checked bag is lost. (I have a confession to make, I prioritize since that would be way too much for me to carry I probably take a little less formula than I should but I won't end up in the ER with out it) In my carry on I also like to have purel and lysol wipes (airplane seats are germy!). If you have a suppressed immune system make sure to wear a face mask in the airport as well since germs and exotic germs!

Lastly is you need to be connected to feeds or IV fluids/other IV things I would try to wait until you are past security to hook up any IV things so you can still go through the metal detector (ports due on tend to set them off ) instead of doing a pat down. With a feeding tube you can disconnect and reconnect much more easily before and after the metal detector.

Good luck and happy travels!


Be Brave Playlist

One of my coping mechanisms for dealing with chronic illness is music. Not playing it or singing thankfully for those around me but just listening. Here is some of my favorite songs to listen to in doctor's offices, the hospital. or just when I am struggling with life. And yes I am super cheese and have a playlist on my phone called "Be Brave"

1. Brave By Sara Bareilles - You had to have known this would be on there since the title of my playlist is be brave, since sometimes we all need a reminder.

2. Superhereos by The Script - I love how this song is all about turning pain in to power and how everything you fight through makes you stronger.

3. Stand By You by Rachel Platten- No surprise that Rachel Platten will be making this list multiple times. This is like the anthem of spoonie friendships, a reminder that even when it feels like you are going through hell it will be okay as long as you have someone by your side.

4. Her Diamonds by Rob Thomas- First off he wrote this song about his wife who has a Lupus like autoimmune disease (possibly Sjogren's? my note not an actual fact). It perfectly captures what waking up to the morning stiffness and pain feels like "it's funny how the night can make you blind"

5. Little Light by Rachel Platten- This song perfectly captures what it feels like to be going through a tough time. It mentions feeling older than you are and how the little stuff doesn't always matter but you just need a bright spot to get you through.

6. Fight Song by Rachel Platten- (I told you she would be on here a lot) How could a chronic illness play list be complete with out this song? My favorite line in it is "I don't really care if no one else believes cause I have still got a lot of fight left in me!"

7. Be Okay By Oh Honey- I just like how upbeat this song is. It always reminds me to look at all the good things I have in life and that everything is going to turn out okay.

8. Young Blood by Bea Miller- This song reminds you that sometimes life sucks but you always have the power to make it a little better and I am still young an have a lot of time left for good.

9. Fighter by Gym Class Heroes- A song I only recently discovered but a new favorite for sure. My favorite line is "Gonna live life till we're dead.Give me scars, give me pain"

10. Flares by The Script- This song reminds you that even when you feel like you are all alone there are people out there who care about you and will stand by your side.


The Missing Pen Cap



I am not sure where I am going with this blog post but it will probably end up being a warning to all of those people who bite off more than you can chew like me. I also just need to try to calm my mind that feels like it is going a million miles a minute, as a result my writing may be all over the place. I am thinking writing will help.

Tonight I ended up near tears because I lent my pen to someone and they returned it without the cap. On the ground crawling around for the pen cap I realized I may have over done life this week and I needed chocolate or ice cream or more likely both. I wanted to think about all the things that had lead me here so in the future I could prevent such break downs from occurring in the future.

First off there is some medical stuff that is definitely going in to play here. A few weeks after being diagnosed with Sjogren's my POTS symptoms were acting up and I email rheum instead of cardio this time since we now know the cause. We decided to see if upping the prednisone would help and it did but prednisone side effects suck. I was actually doing okay till I had an endoscopy and they gave me an IV dose and then I didn't sleep for a week. Then last week I had a fever and need another stress dose which messed with my moods. Being a camp counselor who is having mood swings thanks to prednisone is not fun! For the few days after that dose everything seemed to make me irrationally annoyed, I try to pick and choose my battles with the 6 year olds but prednisone made that really hard, so I seemed to constantly be calming myself down in my head. I like to think I was at least aware of the fact it was the steriods making me angry and what the children where doing was not that bad and did not take it out on them.

This week has been a little better in terms of side effects but the weaning off the stress dose of 20mg to my current normal dose of 10mg has left me exhausted (yet still oddly wired?). To make matters worse I have also probably bit off a little more than I can chew. It is the first week of classes as well as the last week of camp. Since camp was really short staffed and I really need the money I agreed to work when not in class, which is most of camp hours. Besides having a night class yesterday and tomorrow I had the opening teachers meeting for Hebrew School today. Yikes. So I went to class, then work and camp then work at Hebrew school. By the end of the meeting I had stuff everywhere, my ride waiting for me, and the cap of one of my new pens missing.
Staedtler Triplus Fineliner 0.3 mm Porous Point Pen 334 - SB10
Look how nice they are!

In my defense the pens are a set that come in a case and need the cap to fit properly and my planner is already color codded. Also I am going to blame prednisone for making me crazy. On the bright side hopefully we can wean my pred dose at my rheum appointment next week. I am also seeing endocrine in a few weeks to deal with the whole long term steriod issues thing.

Lesson of the day- Prednisone makes Joan crazy but over committing herself makes everything that much worse and leads to freaking out over silly things.

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.