It’s infusion day eve.
The image above gives a fairly accurate representation of what it feels like the day before I head to Allegheny General Hospital for my monthly fill up (it also looks freakishly a lot like my actual hair, which I will never stop being amused by).
It’s funny. I have been convinced that Tysabri wasn’t helping me. I spent some time reading over my journal entries from 2016 and it is flat out undeniable that I took a pretty good downhill plunge over the course of the year after my diagnosis. Friends with MS tell me this is not unusual. Sometimes the downhill plunge lasts years before you get to the new normal – the place where you never really feel great but you don’t always feel like total excrement either and somehow that’s OK after three or four years of feeling like utter shite.
I’m only a year in. Almost 12 months of monthly infusions. Not quite 12, really, since my insurance company made me wait three months for the honor of their approval on my doctor’s treatment of choice, but almost a year.
Pretty soon, because of my JC Virus status, I will likely be kicked off of Tysabri anyway, mostly because feeling generally crappy is so much better than dying of a deadly brain disease which is what could happen if I stay on Tysabri for too long. Being JC positive means my time on the juice is limited.
I was convinced Tysabri was trying to kill me from the start (because he was, he never even tried to hide it). The bitch of it is, he wasn’t even a great match even in the honeymoon period. Tysabri didn’t make me feel good. Some days I thought he made me feel worse. Like the bad boyfriend who you just can’t quit, I struggled with the sense that I was in a bad relationship and just like other bad relationships I’ve been part of in the past, I stayed in this one because I was afraid to walk away.
I told myself to be strong. Call him out for the imposter he is! Tell The Great Scott (TGS), the ultimate yenta matchmaker, that I deserve a better relationship with a better drug – maybe one that will actually help me this time. I worked up the gumption and told TGS at my last appointment that I think I deserve better.
TGS mentioned that he might want to introduce me to a new guy. He lives in another country (meaning, he’s not allowed to help me yet in the United States because he’s still awaiting FDA approval) but he’s on his way here and he is far less likely to kill me. In fact, he seems to be a better partner overall – showing great results in some really stubborn situations (like for example, primary progressive MS which I remain relatively sure I have and nobody, least of all The Great Scott, wants to admit that to me because it’s kind of a hopeless thing to admit).
As luck would have it, the FDA decided to take a little longer to approve my new man, therefore, I find myself running on empty (again) desperately awaiting the date with that old drug that I’m not convinced is even working all that well. I have to admit it probably is working better than I think, because when I’m running on fumes (like I am now on infusion eve) I cannot deny that I’ve felt better than this earlier in the month. Not much better, mind you. But better.
Today I can barely walk. Tomorrow I will show up for my juice injection and then spend the rest of the day sleeping (he really takes it out of me). After that, I will have a few less than crappy days until I start running low again…and the whole cycle repeats itself next month.
We always knew this was just a fling, Tysabri and me. We’re still together even though we know our relationship is doomed and there’s a new beau lurking in the wings. Until the mysterious Mr. O arrives, (his full name, Ocrelizumab, is really hard to say so I’m hoping pet names are established fairly early in our relationship), Tysabri is kind of the best I have to hope for.
The really awesome thing is that once Ocrelizumab is FDA approved I will go down the health insurance rabbit hole, again, as my insurance provider will almost certainly reject me for this potentially revolutionary new treatment and make me wait months for their gracious approval. They just did exactly that already this week for a new drug my doctors think will help me walk better. Insurance said, “Yeah, no. We’re gonna make you guys jump through some hoops again. How important is walking anyway? I mean, seriously, get over it Beth. REJECTED.”
The beauty of the fact that a disease that zaps you of energy takes so damn much of just that in order to fight the fight to get the care you need is a topic for another day. I’m both excited and not excited to go down the health insurance rabbit hole again.
Sometimes a bad relationship feels better than no relationship at all. While I’ve personally learned over the course of many, many years how untrue that is (and have thus avoided this very thing in my personal life rather successfully), the specter of the bad relationship just won’t leave me be.
So I guess I’ll put on my best comfy clothes tomorrow and fix my bedhead up real nice for my date with Tysabri in the morning.
He won’t appreciate it. But, for now, I’m giving it my all. At least until something better comes along.