When life doesn't go as planned...

I had so many plans for this summer. I had applied to too many internships and jobs to count. I planned on going to the gym and going through a summer long transformation. A while back, I even toyed with the idea of applying for a counselor position at the summer camp where I used to spend my summers growing up. But I was turned down for every internship and job. When I came home, I felt continuously way too fatigued to go to the gym, never mind leave the house. And I decided that not being able to escape the heat at camp would take too much of a toll on my body. (Because of my nerve damage, I suffer from Uhthoff's Syndrome. Essentially, heat + nerve damage = a very weak body.)

I was really frustrated that I had planned out an amazing summer in my head, and when summer rolled around, nothing was going right. I felt that I had failed. I graduate in May and have yet to get an internship or a job. It's not that I don't want one. Trust me, all I've wanted since I got sick and had to leave my job is to return to work. But it's incredibly difficult to find a company that sees a person in a wheelchair as a positive asset. Even though they legally can't have a problem with my disability, it's very easy to tell that they are uncomfortable with it all.

I've been feeling like this summer has just been a waste of time. That is, until I got the results of my most recent blood tests. My NMO antibody test, which has been negative for the last four and a half years returned to positive in June. Thankfully, I have a no-nonsense doctor who wasted no time and immediately called in a prescription for Rituxan. Rituxan is a chemotherapy drug that isn't technically approved for NMO, but is actually one of the most common courses of treatment among NMO patients. This means that I have to have two infusions of Rituxan, two weeks apart.

Today was my first infusion. Anyone who knows me, especially those who have ever come near me with a needle, knows that I am an extreme needle-phobe. Luckily the nurses in the infusion lab rock and had my doctor call in some valium for me. I am a hard stick and, not that iv sticks are ever pleasant, I've never had a pleasant iv stick... until today. The valium, without a doubt, made a world of difference. But I also tried a new pain management strategy. A few days ago, I read about a study that had been done about pediatric patients and music. They found that if children listened to the music of their choice, their pain decreased by 1 point in the 1-10 scale. So I decided to give it a go. Music has always helped me through treatments and procedures, but I had never listened to it during and iv placement. So I put my pink earphones in, blasted some Taylor Swift, and thought about how her concert is coming up soon. It worked! I felt the poke of the iv, but it went right in without a problem! (Shout out to the fantastic nurses in the infusion lab at Rheumatology Associates.)

Everything happens for a reason. Absolutely. Everything. Whether you realize it or not. If I had landed one of those internships I applied for, I can't even imagine my heartbreak if I had to give it up to come home and get treatment. Sometimes, there are just more important things in the world than getting work experience, you know, like my life and physical abilities. Getting this Rituxan means that I'll hopefully be warding off any attacks that may have occurred if I hadn't gotten the treatment I needed.

Don't get me wrong, I am upset that this summer didn't turn out the way I planned. But let's be honest, what actually ever turns out the way we plan? I didn't realize it at the beginning of the summer, but as time has gone on, I needed this summer to take care of myself so I can be in my best possible shape for my senior year of school. Only about a month and a half until school starts!