I’m a member of many Facebook groups dedicated to the transition to the new goo, Ocrevus, because I was looking for any information at all from any source at all about what to expect from the very, very new disease modifyer.
Protocol seemed to be all over the place. Some people were forced to do the 60-day flush (like me), others were told to start the new goo immediately without a wash out.
Initially most of the posts were about what to expect during the infusion. I guess because I had been on Tysabri for 15 months before the transition, I wasn’t all that concerned about the infusion experience itself. I knew to expect it to take longer. I knew I would get Benedryl and Solumedrol prior to the new goo. I was fully prepared for the experience. I trust my infusion nurses. I was looking forward to seeing them, really.
What I was jonesing for in my social media trolling, were stories of how people felt after getting their first full dose. I was dying for any reason at all to feel optimistic. I needed to believe I could eventually feel better, that these persisting and worsening symptoms I was experiencing since the two month flush began would eventually get better. I wanted to believe, very badly, that I would get better. I’d heard stories. I’d heard people say they felt better almost immediately. I wanted to hear more of those stories and get an idea of what was really possible related to the very mysterious new goo that nobody seems to know very much about.
The two month flush was not a good thing for me. I got to the point where I was before I started any treatment at all. I could barely walk. I wanted to sleep 24 hours a day. The heat paralyzed me. After taking a bit of a nose dive that felt very relapse-like, The Great Scott put me on a three-day course of high-dose Prednisone. That was after my second 1/2 dose of the new goo. I was starting to panic. I really needed to feel better and I just kept feeling worse. I swallowed those bitter (literally) pills by the handful with joy because I was that desperate to feel better.
The Facebook groups that I joined to get information from other patients started to have the opposite of my intended effect, though.
In short, they really started to piss me off. Post after post of “I can walk again!” Post after post of people writing about regaining use of formerly useless limbs. Some no longer using previously necessary walking aids. Their hands and feet were no longer numb. Their vision was coming back in their eye they had trouble with for years.
People were feeling fan-freaking-tastic all over the internet and I’m over here taking a slow, infuriating nose dive into becoming a hermit who can’t walk more than a block because of the incredible weakness in my lower body.
I have new symptoms I didn’t even have before! I have trouble lifting my legs now. It used to be only my right leg, but then it was also my left. Putting on underwear, shoes and pants required sitting or holding on to something with one hand. My problem with my legs isn’t the mechanism of walking (this is kind of complicated) but I don’t have the feeling I used to have of my legs not knowing what to do when my brain told them to walk. Ampyra really helps me with that problem. It still does. My new problem is overwhelming weakness. My legs feel like they could go out from under me at any minute. I walk more like a drunk than I used to before the two month flush. I find myself holding on to walls, telephone poles and random strangers. I’ve finally opened my mind to the idea of getting a cane. It’s that bad.
The most noticeable new/old symptom I’m experiencing is pain – overwhelming pain in my back that makes me feel like I can’t stand up for longer than 10 minutes. I never thought Tysabri did much for me, but it must have been doing more than I thought because I haven’t had pain like this in a very long time. It’s what makes me need to lay down in the middle of sheet changing. It’s what makes standing up and socializing at a party virtually impossible. It’s what makes Ibuprofen qualify as one of my major food groups.
The steroids made me feel better for about ten minutes but then left behind their usual pleasantries – moon face, apple belly and camel hump. Yeah. You read that right. In my research about how long my post-steroid uglies might last, I found out that Prednisone at very high doses not only makes your face look like a giant pie, but it also contributes to the redistribution of fat in your body (hence the “apple” belly and camel hump at the top of your back).
I mean. If you know me in real life, you already know about my obsession with my hump. I could talk about it here, but suffice to say it’s a form of insanity resulting from a life-long posture problem and a collarbone not quite set properly from a childhood accident that leaves me with a sort of hump-like thing at the top of my back behind my neck. Most people who know me will tell you they think I’m insane. They will tell you they can’t see my hump. They are liars.
You might also already know that having a quasi-flat stomach was kind of my only feature I could generally embrace. I’m a hippy Italian woman. I have always been “thick” as the kids call it. But thanks to never having giving birth, and some good luck, I never really had a gut. I never had wash-board abs or anything even close, don’t get it twisted, but my entire wardrobe is built around not having a giant belly. That wardrobe is rather useless right now.
You might be laughing at the irony of how these particular side-effects would be so terribly bothersome for me. I’m eating vegetables and drinking water and doing all the things they say you should do…to no avail. I still have all three…the Prednisone trifecta of things to make me more miserable. The damn steroids didn’t even make me feel better long enough to make any of this even close to worth it.
I would tell you these things no longer matter to the newly not-vain me, but they do. I still hate that I can’t just throw on clothes and feel OK without thinking about it all that much. I still hate that my face looks like a puffy, giant, squirrel with cheeks full of nuts.
I really hate that my other more valid and important symptoms do not appear to be getting any better. Newly Nice Nurse Carol advised patience. She taught me about cytokines and what happens when you kill a lot of B cells in your body all at once (that would be a whole lot of inflammation). She advised me not to lose hope when I’m not immediately feeling all miraculously cured. She and TGS both believe if I give this time, this drug will help me.
I want them to be right. But patience is not my best quality either. Reading about so many people who feel so much better almost immediately almost makes me angry. It makes the following words swim around in my brain at the most inopportune times…
“What is wrong with me? Why can’t it work for me, too?”
I’m not giving up on the big O. I’m not throwing in the towel and accepting drunk walking as my new normal just yet. But damn. A little relief somewhere would be most welcome about now. I want to be one of those miracle post-ers! I don’t want to be mad at them. I want to share in their glee. I want to BE one of them.
This is to say that all of this just leaves me feeling like a bad person who can’t muster joy in her heart for others who are doing better than me. It makes me feel like I’m the only MS’er out here who has been given lemons but has not figured out just yet how to make the damn MS lemonade.
I’m more like sucking on lemons and feeling the heart burn and making funny puckery looks with my moon face all the while trying to hold my life together in some tiny semblance of what it used to be.
I think I’m starting to understand why people of faith benefit from their belief. It gives them something to hold on to when there’s not much left in this world to grasp. It gives them a way to keep believing in good and not giving in to their baser instincts. I am not a person of much faith. I guess life has shown me a few too many things that have led me to question the whole “benevolent master ruler who keeps us safe and happy” thing. But anymore, I get it. I find myself asking someone, (I’m not sure who, the universe maybe? The great goddess in the sky? The hippie Jesus I learned about in Catholic school in the 70’s?), I find myself asking something, anything, whatever it is, to give me the strength to not be discouraged by the good fortune of others. I find myself asking it to help me look at my moon face and say “You’re ok, kid, it was only a face. It’s not who you are. It never was.”
Don’t get me wrong. I know I am nowhere near as bad off as many of my fellow MS’ers. I still have so many things to be grateful for. I still haven’t had to have any discussions about catheters or wheel chairs and this in and of itself is evidence of how grateful I should be feeling. I still have a job that I’m still pretty good at!
I will be grateful. I will figure it out, eventually. I will remember how to make lemonade. Then maybe I will invite you to my chilly house to drink some, mixed with some raspberry vodka, to celebrate my discovery.
My new quest, my new thing to learn, is that life is not a competition. Having a chronic, degenerative disease is not a thing you can win. I might not see it, but we’re all dealing with something and you can bet it’s not something super fun. Being someone with a generally invisible disease, I should know this better than most. How could I have forgotten?
This good things that some of my fellow MS’ers are experiencing and posting all over Facebook about might be the first good things they’ve had in 20 or 30 years! I can see my silver lining immediately. I wasn’t diagnosed when I was young. I have done a lot. I’ve lived a lot and seen a lot before this hideous mystery took up residence in my central nervous system. I can still walk! Maybe it looks funny, but I can do it.
I’m only a year and a half old in MS-years. I’ve got a long road ahead of me. I better find that lemonade recipe fast. Anyone have Beyonce’s number?