Forty Nine Weeks Ago

There hasn’t been much new or exciting news to report on the medical front lately. The heat has been kicking my ass a bit these past couple of weeks but it just means I’ve got to take it slower. I’ve had to break out the ice pack a few times but it has been fairly easy to regulate my temperature. Thankfully there are lots of easy and practical ways to cool down. I wish it was just my temperature regulation that I had to think about with all this stuff. My brain has been trying to do quality of life math to make a decision about treatment and it is not fun or easy.

At my last appointment with the neuro doctor we talked about a different form of treatment, an oral medication called Tecfidera. The appointment was right before the trip to Louisiana and at first I was hesitant to start because of the “adjustment period.” I did not want to have to deal with nausea and gastro-intestinal discomfort on the road. Now there are a few weeks coming up where we don’t have any travel planned but I am still finding myself reluctant to start this medication. Since April I’ve been ignoring calls from the Johns Hopkins pharmacy, the CVS specialty pharmacy, and a company called Biogen. Apparently none of them got the memo that I did not want to start this medication right away, but I also never bothered to pick up the phone to tell them either. Shannon did answer a call from CVS Specialty Pharmacy for me last week and let them know. So now I am just getting calls from Johns Hopkins and Biogen. The first calls weekly, the latter calls daily. Sometimes I just genuinely miss the call but there are days where I actively choose not to answer. I think the whole back and forth bs with the last medication put a bad taste in my mouth for the whole process and I am less willing to engage in it. I also don’t want the CVS Specialty pharmacy dispensing my medication because of the royal fuck up they made with the last medication that made it take weeks longer to get the first shipment.

So on one hand I can take the meds and it might lower my risk for further flare ups or lesions forming but there could be some pretty uncomfortable side effects and it isn’t a sure thing that the medication will prevent that. Also having to keep in mind that starting and stopping treatment puts me at a higher risk for flare ups so once I start treatment I am not going to want to stop. On the other hand I can put off starting treatment. Do my best to eat well, exercise, and have the doctors monitor me a bit more closely then they might if I was taking a medication. The side effects of the last medication were not pleasant. No treatment is even close to 90% guaranteed and the whole experience with treatment feels a lot like gambling and I am not a big gambler. I’ve never been to a casino, I like a friendly game of poker every now and again but gambling has just never been a huge interest for me. But now circumstances are forcing me to gamble with my health and my healthcare and that just seems wrong.

The doctor didn’t seemed to concerned that I was not interested in starting the medication right away but I think I need to let them know that I want to push off taking medication for as long as possible. There is a message system that I can make better use of to communicate with the Johns Hopkins healthcare providers so at least I don’t have to make an appointment to tell them that. I just don’t know what not taking medication would mean as far as how often I would have to see them. Appointment days at Johns Hopkins are just that, a full day with little time or energy for anything else on those days. Every appointment has always included a wait of at least an hour before getting seen. Drive time and parking fees add up. And they are emotional days, confronting a lot of this shit is hard and the healthcare system sucks so there is that added aggravation.

At the end of the day I have a decision to make. But I don’t feel any closer to a clear answer for myself then I did back in April.