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...

I feel like I haven't written in ages, I have had so much going on. First I was on vacation in Maine then I had welcome week at school and the first week of classes. This is just going to be pictures, but I have a lot to write about in my next post if I ever get the time! Lil Sis Surveying the Ocean Loving my new LL Bean Moccassins My idiot sisters were the only one in the water at night without a wetsuit on! So I may have made my sister get up at 5am to see the sunrise! Carousel Sister Selfies Learned How to Use KT Tape Temple Time! Target Take Over! South Street in Philly! Ziplining In the Middle of a City So Blogger is getting mad at me for adding too many pictures so I am just going to put one more as a sneak peek to my next post (if I ever get the time to write it).

I have been meaning to write for a while now but I have been stressed and college stuff has gotten in the way. On Wednesday I had my last PT appointment for my right hip! It was a bit early, but my insurance cut me off since my hip is doing so well. I will be back soon enough after my left hip surgery anyway. I will continue to do my exercises at home but it will be a nice break for a little while. This weekend I went to my last youth group convention *cue the tears*. I had an amazing time with all my friends but it was a reminder of how weak and messed up my body is. Thursday night was senior night and we went swimming in the hotel pool. Well my arms where tired after about 30 seconds of treading water, I have no idea how I am going to deal with crutches again. I woke up a few times during the night because of hip pain. My Paper Plate Award and Lanyard (my friend put the golf coordinator ribbon on to  make fun of the fact I had to use a golf cart at one convention...

I haven't posted in a week because I was at my youth groups international convention in Boston! It was an amazing week, and makes me sad I am a senior, so this one was my last. My health did make being functional a bit harder and slightly less possible than when I went to last year's. Mind you last year I was just about seven weeks post op from knee surgery and had only been totally off crutches for a week. I even had to use one crutch for a day because whenever I got shoved my knee would give out. This year while I didn't have to worry as much about my knee specifically, as since the euflexxa it is one of my better joints, I had a lot of other things to worry about. My first issue with any trip I have taken (even overnight ones) is packing, because my hips hate bending. I found the solution was to put my suitcase on my bed (such a no brainer I feel stupid for not thing of it sooner. The bus ride was four hours of sitting, not something I can do easily, but I was ab...