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.