Super Powers

Woah.

Guys, maybe I do have super powers.

Or at least, that’s how I’d describe the euphoria I’ve had the last 48 hours.

I didn’t realize how much I was hedging my bets with Ocrevus. I didn’t really expect anything to change, or for the changes to be subtle and to take a while to notice.

Nope!

The changes hit me the next day and they feel amazing!

It’s hard to describe tangibly what I feel. But I’ll try. You know how on old TVs the channels you didn’t get were just static? That white noise is grating if you flip to that channel, but if you leave it there, you get used to it. I had my infusion on Friday and by Saturday I noticed a big change. It was like someone turned off that TV. No more static.

This is true in both my mind and body.

I knew I was experiencing some symptoms in my legs. Some neuropathy (pins and needles). Some foot fall. But by and large if you asked me 3 days ago how I was feeling I’d tell you honestly I was feeling really good. I’ve been exercising a whole lot (which keeps the neuropathy at bay), but I’ve been feeling really good lately. I started meditating again, and was finding more energy and joy in my daily life.

But man. There was a lot of noise in my body. My legs and feet feel like they’re mine again. I don’t know how else to say that. I feel more things more readily in them, and they feel more responsive.

The same is true for my mind. When I drink coffee (rarely, because it’s not good for me), I literally feel euphoric, or some degree of mania. The coffee comes with a crash. But the last two days, my mind has been running real fast. I’ve been almost euphoric. My mind has been skipping, jumping, and playing in ways that haven’t been accessible to me in quite a while. One thing I noticed when I got the MS diagnosis is how much mental acceleration I lost. I could still do analytical tasks, but it required much more effort and focus. It’s early days, but man, if I feel like this forever, that’s all I could ever hope for.

It feels like the last few years I’ve been steadily improving, through a lot of hard fought effort. I’ve said it before, and I’ll say it again, I’m going to be fine. I know that in my body now. But this recent turn, well, it feels like I’ve reached escape velocity. I know there will be bumps on the road ahead, and I’m ready for those. And I still have some more tricks up my sleeve. But damn, it feels really good to be me right now.

The weirdest part of this experience is how scared I am right now, after the fact! It’s scary how much pain I was in without realizing it. I knew something was off. But the buzzing was omni present to the extent that I was almost unaware of it. It’s funny how much you can acclimatize. Again and again, my upper threshold of how good I can feel increases. If you asked me two years ago how I felt, I’d say I felt about 80% of what I could feel. But you know what? That 100% I was measuring it against two years ago is way out of date! That 100% is now more like my 40%! And that feels awesome. So yea. This stuff is scary. And it’s important to fight. And it’s important to trust your body.

During the infusion there was a moment where I was worried. When they upped my Ocrevus dosage to 120cc (they up it by 30cc every 30 minutes until you’re at the maximum of 180cc), I noticed my scalp start to itch. I was told to
report this if it happened, which I did. They stopped the infusion, and called
my neurologist. At that point I realized how crushed I would be if my body
rejected the new drug. Luckily, they gave me more Benadryl, I stayed calm, the itching stopped, and the rest of the infusion went smoothly. I didn’t realize
how much I was looking forward to this change until I realized it almost didn’t
happen. (Or at least seemed that way). I’m really really grateful it went
smoothly.

I don’t know if everyone gets this effect from the drug. I hope so! But all the
blood sweat and tears I’ve put into this fight the last few years have really
paid off. If I’d started on this drug a few years ago I don’t know if I would’ve
noticed or appreciated the effect the same way. And this way, I’ve built so many great habits into my life, that I feel real darn bullish on feeling this good
forever! And I tear up when I tell my friends and family how good I’m feeling
now. That’s another example of something I’ve steeled myself against ever
expecting to do. It’s so wonderful to smile through those tears and relish spreading this good news!

I’ve met and started to connect with folks in various stages of their fight with
MS. Every single one is a fighter, but the fight looks real different from the
outside. We can beat this, but only together. I need help.

Right now, based on all my reading, and my personal experiences, if I had to bet on one theory being the key to this disease, its the gut. Your microbiome.

That’s why I’ve joined the Baranzini lab at UCSF to help them with their
research and also help them promote their iMSMS study. (If you are located in the NYC, SF, Boston, or Philadelphia areas, please share this link!) The goal is to get 2,000 patients enrolled. We need this data if we’re going to find the cure!

I’ll be talking more and more about this. Until then, #poopforMS