Life with a Flare

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. Th...

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 wr...