A Week in the Life

In order to fully give an insight into my life I will try to highlight my weeks throughout the year. I was working full-time and am currently looking for another full-time job. I am going to school full-time, while working a part-time job at the same time. SMA does cause fatigue and I am usually exhausted. A lot of the exhaustion has to do with how hard I push myself throughout the week, which is probably a little more than I should. Last January through April, I was working a full-time retail job, going to school full-time, and working an additional part-time job. The part-time job is seasonal and I will have more free time once that ends. I will try not to jump off topic too much, so I will jump right into my week.

Most of my week was laid back and boring as I was working and the other half of the time at home doing schoolwork. Yes, my classes are online. I like it because it gives me the flexibility to work a full-time job. It also helps for days that I am not feeling my best. A few times, I have woken up, unable to get myself out of bed in the morning. That most likely comes from over-doing things in the previous days, or from an illness that is stealing even more of my energy.

The other half of the week was spent trying to figure out health insurance issues. The company I was with had switched insurance carriers in August, so I was expecting to have my information on the 1st. Well, that didn't happen. After several emails, I was finally able to receive my insurance information. Finally, I was able to again start the approval process for Spinraza treatment. I originally started in January, but that insurance wouldn't make any decision until April. When I switched jobs I had to wait to be eligible for the insurance with the new company. They then switched insurance carriers the next month after I had qualified for the insurance at the end of the waiting period. After that, I would have to wait two weeks for the pre-approval process.

The pre-approval process with insurance involves my neurologist sending in my information, stating that Spinraza is medically necessary. The insurance reviews the information and decides whether or not they are willing to cover the drug. Given the hefty price tag of Spinraza, a lot of insurance companies have been denying the requests. The entire process should take about two weeks to complete and receive an answer.

As you're reading this, if there's any questions or any topics you would like me to touch on, feel free to ask me. I have dedicated a Facebook page specifically to this topic. You can find it here.

For the most part, I am pretty open. It took me a long time to feel comfortable sharing my story. I spent most of my childhood feeling like I should be ashamed of myself. I’m not sure what led to this mindset, but I felt like I had a secret I had to keep from everyone. I didn’t think I could really tell anyone that I couldn’t do something or how I felt about it. As a little kid you are influenced by things going on around you, and I had an extremely athletic older brother, which may have contributed to that feeling. All I ever wanted was to be able to do the things that seemed to come so easily to others.

As I have gotten older, as hard as it was for me to show someone my insecurity, I knew if I wanted an answer, it had to be done. Not knowing, and wanting answers, is what led me to the doctor’s office in the first place. Now that I am more comfortable in my own skin, if you have any questions for me, please don’t hesitate to ask.