Onwards

I’m writing this one from the UCSF infusion ward.

The New Year is a good time for reflection. My birthday is New Years, but I’ve never been one for resolutions. Instead I like to reflect on what I did the
previous year that was new or brought me joy. 2017 was a very full year with a lot of joy. But I’m even more excited for what 2018 brings.

After my swim last August I had my first MRI in two years. Two years ago I quit my job and moved to Sonoma to heal. The MRI showed a new lesion. To me that was great news! My neurologist wasn’t as excited as I was.

The previous two years I’ve changed everything about my life. Then I did it again. And again. And again. I found what worked for me by finding my limits. I found my limits by blowing past them. The first step of learning is making a mess. I’m good at making messes. So I totally expected some collatoral damage. I was worried that my methods pushed me way too far and I was going to light up like a Christmas tree.

But my doctor was concerned. I started experiencing more neuropathy and foot fall in my left foot. (For the uninitiated, foot fall is where you’re nerves don’t tell your foot to lift off the ground, and is one of the early stages of walking disability). While the results were not definitive enough to force me to change meds, it was now an option. Which is great! Now I’m taking Ocrevus, which is a good new drug, with promising results. In fact it’s the drug I wanted to go on when I got my diagnosis. There’s evidence (and common sense) that suggests that stronger drugs sooner are helpful.

So! I got what I wanted! I’m feeling great, and got the drug that I want!

But the how is important. The how doesn’t feel so great. As is often the case, you’re off balance with Multiple Sclerosis. In this case, it’s emotionally. I got all the things I wanted, but hearing that you’re progressing is never fun. It feels like I’m being yanked around and that I have no agency.

They won’t give you the drugs until they feel the risk is worth it. My neurologist said I’m in the lower 30–40% of patients based on my symptoms and scans thus far. That’s scary. But makes sense. I’ve known something is wrong for a long long time. I’m very familiar with the experience that others are only waking up to how much is wrong. I wish I could’ve made the doctors belive or understand the severity of what I felt. I can understand how subjective that seems and how untrustworthy it seems to base treatment upon. But. I’m tired of convincing other people something is wrong. That’s one of the reasons I’m so motivated to do things about it. I have agency here. I can make this better. In many ways I’d rather spend time making it better than talking about it.

This fall was hard.

The fires in the bay area this fall really got to me. I went a little nuts … taping the cracks along the windows (we’re in an old building) and trying to get my exercise by doing calisthenics indoors. I got a HEPA filter and taped it to a box fan. I tried the face masks. It wasn’t working. I’m not sure if that constituted a ‘relapse’ or not. It’s hard to tell. I definitely felt neuropathy (pins and needles) in my head for the first time in a long time. One funny thing about MS symptoms … when they come back, I appreciate how far I’ve come!

I got out of town to stay with my cousin in Seattle. We did some good hiking and trail running. It was cold, wet, and rainy. I got soaked! It was awesome!

Since then I’ve been hiking every weekend. I’m real damn thankful I can hike. Nature heals me in ways I’m still only starting to understand. These days I do at least 6 miles or so every weekend. And it feels great!

Honestly, while that 30% number above is scary, it also immensely relieving. I finally feel like we can all agree how serious this is. Now that we agree on the problem, we’re speaking the same language, and we have a starting point. There’s a lot of room for improvement! I would’ve been kind of worried if my doctor said I was in the upper quartile. I still don’t feel quite right!

About 50% of people with Relapsing Remitting MS (RRMS) (aka The Good Kind) develop Secondary Progressive MS (SPMS) (the one where is slowly progresses) at the ten year mark. Again, scary. Again, another great benchmark. I windsurf with my grandpa, who is in his 80s. I’m determined to windsurf with my grandchildren. So I’m playing the long game. Of course I’m going to make it past 10 years. I’m shooting for 40! And I’m going to get there!

2018 is off to a great start. This week brought two big milestones.

First, I did my last injection of Copaxone! Boy did that feel good.

I was sharing this with a friend who told me he had no idea I was even on it.
I guess I’m so used to talking about it ‘in my head’ with me, I don’t even realize
how little I’ve shared.

I could write a book about my experience with Copaxone. But the broad strokes are this:

• It’s an injection you self administrate under the skin
• You do this every other day
• It can cause necrosis of the flesh (I have a few funny bumps and dents)
• You rotate different injection sites in your body (triceps, quadriceps, love
  handles)
• You’re NOT supposed to inject it into muscle, just skin or fat
• I’m a lean dude, so injections on my arms really suck. They’re hard to do,
  they seem to necrotize more readily, and it’s easy to miss the thin layer of
  skin and inject in muscle … which is very painful

So yea. I was real darn excited to see the Copaxone go.

In 2017 I spent a lot of time working on me and healing myself. Writing this
blog has been a tremendous source of growth for me. Being vulnerable serves
me again and again. Despite some of the symptoms I’ve been experiencing, I’m feeling great, I’m trusting my body again, and I know deep down I’m going to be fine.

Which brings us to 2018. And my second milestone this week.

It’s time to take the fight to the offensive. I’m going to throw some punches
and you know what … they’re going to land.

And I cannot do it alone.

As of a few days ago, I started volunteering in the Baranzini lab at UCSF.
I walked away from my first meeting and started crying. This disease is
slippery. It’s hard to get a handhold to fight back. But I have one. And I’m
going to use the hell out of it. I’m honored to join the lab, and the fight.

And I need your help. If there’s one thing you do as a result of this blog, I’m
asking you to sign up for / promote for iMSMS

I’ll be talking way more about this study going forward, but if you’re ready
now, sign up now.