I’m laying in bed knowing I should be asleep if I want tomorrow not to suck, but my broken brain won’t let me drift away into blissful nothingness. Not even after being shot up with magical golden (possibly poison) elixir today. Possibly for the last time – at least that’s what The Great Scott would like.
But today wasn’t as uplifting and positive as I was hoping it to be. There’s so much mess surrounding this disease. I imagine that is probably true of most chronic illness. The quagmire of hospitals, doctors, insurance companies, specialty pharmacies, drug manufacturers, nurses and billing department representatives feels like scaling a giant mountain (while having MS).
It has me a bit melancholy, to be perfectly honest. Sometimes it’s all just so…much.
The day started with me telling the story of my Ampyra debacle to the nurses and fellow patients in the infusion room. The story that ended up screwing me out of $500, thanks to Nurse Carol. It helps to know that I’m not the only one who has been touched by the genteel patient service of the illustrious Nurse Carol. We all have had our share of bad experiences. You’d think that would make me feel better but it only made me feel worse. Even the infusion nurses know what a nightmare she is.
Then I found out that the bill I recently paid (for another $384) was a mistake that I shouldn’t have paid because they have yet to set me up for a new year of Biogen assistance. So what that means is it’s probably quite unlikely that I’ll get any of that money back (even though it was a mistake). But even if I do, the thought of the phone calls, the email, the back and forth of health system/insurance company hoo-ha will likely take weeks. Or even months.
I also found out that because of some screw up in coding, none of my insurance claims since last July have been paid. Nothing has been processed. I’m not sure what that means but I have a feeling it will end up not being good for me when they finally figure out their own goddamn system.
Oh. I finally got word today that my long-term Ampyra authorization is approved. Yay! But wait. I actually have to pay the $250 co-pay even though I know it should only be $40 because the paperwork has yet to be finalized between Nurse Carol, the people at Ampyra and the super effective and helpful people at CVS/Caremark. That will be another battle to try to get the money back that I’ve already paid.
Then the talk in the infusion room shifted to the new goo. It seems TGS is very bullish on the timing of the approval of Ocrevus. He has most of us stopping Tysabri after today. But the infusion nurses aren’t hopeful. You see, first they have to get trained and approved to be a designated “center” for the new treatment. Then they have to somehow get all of our insurance companies to approve paying for a brand new, super expensive therapy (which would have been much easier if I still had prescription drug coverage from Blue Cross Blue Shield and not those blistering idiots from CVS/Caremark). It really makes me sad because it’s another thing over which I have zero control.
The short story is it might be a while before any of us are on the new goo. And it’s very possible that my insurance may prevent me from even getting it at all.
I’m seeing TGS on April 5 to get an update and to check in on the plan. Maybe making this my last infusion isn’t the best idea. At the same time, I’ve always known that I only had about a year on Tysabri before the risk of PML becomes too high to balance out the benefit. I’d probably have to go off of it anyway. And then what? Because I’m JC positive, the options will not be great. I can’t even consider the idea that I might have to go old school and inject myself with interferon or some other injectable. I don’t know that the pill options are any safer than Tysabri as it relates to risk of PML. It’s all just so complicated.
I think all four of us in the infusion room left feeling somewhat muddled. Being the newbie, and mired in the muck that is the newly diagnosed experience, I might be a bit more down than the others but none of us seemed to feel too optimistic walking out of the infusion room today.
I told Cheryl yesterday how I feel like this disease has taken over my life. It pervades my every waking moment. Can I? Should I? How will I? What if I can’t? What if they won’t? How much will be left of me when all of this reaches some kind of new balance? What if it never does?
The energy it takes to play the part of Old Me while New Me is dealing with all of this madness is gargantuan. But not playing the part of Old Me isn’t even an option. I’m a single spoonie, after all. Someone has to pay all of the ridiculous drug and hospital bills. It feels a bit like a Catch 22.
Nurse A looked at me today and said, “I’m really proud of you for how you’re handling all of this. Most people just let it go. They don’t fight it. They don’t even know how.” I looked at her incredulously and said, “What choice do I have? Honestly. I cannot see any other way.”
And it’s true. I don’t feel amazing or strong or even skilled when it comes to this battle. I feel like I’m David fighting the behemoth that is Goliath (aka our fucked up health care system) with broken weapons, one arm tied behind my back and money bleeding from my veins all around me in giant puddles.
I’m only a little over a year into this and I just feel so tired of it. I’m tired of everything being a goddamn fight.
But guess what? It doesn’t matter that I’m tired of it. I don’t have a choice. It’s truly my only option. Plain and simple. So, I am telling myself to suck it up, buttercup. Have a little pity party for your fabulous, old, carefree life (it sure seems pretty carefree in hindsight! How funny is that?), then move along and figure this shit out.
Tomorrow is another day. Put on a happy face, swallow some super pricey drugs, and get on with it. In hindsight, I guess that’s what we’re all doing, really, chronic disease or not. At least I’m not alone.
One tiny bright side to (potentially final) Tysabri infusion day…I have in my grubby paws the phone number for good old Nurse Carol’s supervisor.
I better get to sleep now ’cause I want to be at my broken best for that particular phone call.