Life with a Flare

I have now actually completed both of my Rituxan infusions for this round. This was probably the most frustrating round as I was trying to figure out how I would feel after each infusion so I could plan but everyone I talked to seem to have different experiences with the medicine. SO my disclaimer is my experience may be different from yours. Infusion Day  Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world. For the first infusion my port was already accessed but for the second infusion...

Disclaimer: This post focuses on the difficulties I had with my insurance company recently to get treatment. And while it is easy to blame only the insurance companies for denial of coverage the drug companies are also at fault here for charging exuberant price and charging different amounts in different countries. Many of my close friends know how frustrating this summer has been. As you can see from my last post I have been flaring since student teaching in the spring. In the past it was hard to control flares because we didn't know the underlying cause/disease and therefor the appropriate treatment. This is no longer the case. I have a diagnosis (plus) and awesome team of doctors who come up with aggressive treatment plans. Theoretically when one treatment starts working and my doctors change the treatment plan I should be able to start the new treatment and hopefully be on my way to feeling better. However when that treatment cost $10,000 or $20,000 and off label it is not th...

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess. Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause ...

It's been six months since I last updated my blog so this will be just an update post. I did not even do a year in review for 206, probably because of the last two months being so rough on our country I could not bring myself to think about it. Since I left you a lot has happened. I finished my last semester of college during which I student taught and then did the whole graduation thing. I also have a lot going on medically. Student teaching is the reason I did not really blog this past semester. I loved it so much but it was really hard and exhausting. All my energy went in to my students and my assignments as I had to build my senior portfolio. I still cannot wrap my head around the fact it is over and I am a college graduate. Somehow during student teaching I stayed fairly healthy. I only caught one upper respiratory infection. Of course that was a whole ordeal with breathing issues and a fever which sent me to the ER and an overnight hospital stay. However I only missed ...