Tag: RRMS

My Life with MS: Hey, do you like games?

Posted by Erin on September 9, 2018

Last week, I turned 41 years old.

I know, I know, that’s not OLD (argues everyone who is already 40+…), but no one can deny that it at least qualifies as “getting up there.” So at 41, I’m experiencing the anxiety that most do around this age: that my body—this machine that houses my mind, my memories, my personality, my intellect—is starting to break down, and I’m going to find myself functioning less efficiently, in increasingly noticeable ways.

I was 38 when I was diagnosed with multiple sclerosis. MS is a chronic, degenerative condition affecting the central nervous system. The bodies of people who have MS function less efficiently, in increasingly noticeable ways. Sound familiar?

I haven’t had MS for very long, so I’m still learning what my version of this nasty life companion will be. And at the same time, I’m facing the realities of getting older. Being 41, and having MS, I find myself frequently playing this fun guessing game I like to call—everybody shout it out with me, “Wheel of Fortune” style— AGING! OR! MS!

A couple of the clues are super easy. Grey hairs and wrinkles? Definitely aging. Bright spots that show up on fancy magnet pictures of my brain? That’s MS, final answer.

But everything else? Every other tingle, every surprising little jab of pain, every loss of sensation? Those are the big question marks.

I have what’s known as relapsing-remitting MS. That means that there are periods when inflammation within my body causes new damage or aggravates existing damage to my brain and spinal cord. These are relapses. I’ve had two. The first led to my diagnosis, and the symptoms included loss of coordination and a bizarre electric sensation that traveled from my neck to my tailbone whenever I put my head down, chin to chest.

The second relapse came about a year later. I took a nap one afternoon, and when I woke up, the left side of my face was numb. It was that fast. I thought it was just my face, but when I finally went and saw my doctor, we discovered that there was low-grade numbness down the whole left side of my body. An MRI revealed a new lesion (an area of nerve damage) on my brain stem. Point for MS.

Between relapses (which can last a few days or a few months or longer), there are remissions. These are periods when the inflammation decreases and symptoms (all or some) lessen (all the way or some of the way).

So, when I was in the midst of an active relapse, it was safe to assume that whatever new bodily glitch or deterioration of function I was experiencing was because of the MS.

But if I’m cruising along through a remission (like I am now), feeling pretty good (i.e., feeling like a normal, marginally healthy human), and something new and weird happens, my immediate thought is, “Is this just me getting older, or do I need to be worried that this is my zombie brain trying to eat itself again?”

Let me give you some examples.

Since my diagnosis, I’ve noticed that I drop things more than I used to. I don’t know if I’m actually dropping things more, or just noticing it more, but either way, gravity is knocking things from my hands more than I’d like. Aging or MS?

I occasionally lose my balance when I stand up too fast from a seated position. Aging or MS?

Sometimes, when…ahem…“nature calls,” the urgency goes from zero to critical in a matter of seconds, and God help me if I’m not near a restroom. Aging or MS?

I forget things. Like, whole chunks of conversations I had not very long ago. I struggle to think of words or phrases or names. Stuff that I should be able to fucking remember. I lose my train of thought midway through talking.

Aging?

Or MS? Is that you, Mr. Relapse? Have you left another spot on my brain?

Here’s the real kick in the teeth about this “Aging or MS?” guessing game: there’s no way to win it. Every time I ask myself the question, it’s because something isn’t working the way it’s supposed to. Trying to figure out WHY is just a thing we humans feel the need to do. It brings peace of mind, somehow, even if knowing why won’t change a damn thing.

Aging or MS? Does it matter? There’s no turning back the clock on either one.

Not yet, anyway.

I mean, aging is aging, and there’s not much any of us can do about that (without grand feats of cosmetic manipulation anyway, and sometimes, not even then). But with MS, there remains a glimmer of hope. Progress has been made already. In the last 20 years or so, there have been about 15 medications approved in the U.S. for treatment of MS. They’re known as “disease modifying drugs” because, while they can’t stop disease progression entirely, they can slow it down, lessen the severity of symptoms, and extend those periods of remission.

Ending MS and restoring what’s been lost. That’s the goal. And when that day comes, I hope you see me with a big smile on my face, full of gratitude for the chance to grow wonderfully old, in better health.

My Life With MS: I don’t really run anymore.

Posted by Erin on April 12, 2018

The year before my MS was diagnosed, I was running a ton. I was training for a half marathon, running 4-5 days and 15-20 miles a week, feeling good. After a lifetime of hating to run long distances, I was really growing to love it.

Except for the falls.

Over the course of 2015, I fell while running, six times. No wait, I take that back. Five times. Once was while walking. These weren’t cases of bad footing on uneven ground, or tripping on a curb or crack. These were just a foot not quite clearing flat ground, and me going down. Hard. It’s amazing that I didn’t injure myself more severely than scrapes and bruises. Well, there was injured pride too, I guess.

I found things to blame. I fell because I was out of shape (not really sure exactly how that computes, but I convinced myself it might be true anyway). Or because I had bad running form (which I still hold as true, though it was not the reason for the falls). Or maybe I was just clumsy (which I didn’t really believe, but it was an excuse that I could handle).

I didn’t know it at the time of the falls, but my MS was likely at fault. You see, numbness/tingling in the extremities, and loss of coordination are common symptoms in MS, and for many people with MS, symptoms are exacerbated by heat. Including rises in body temperature. Ya know, like when you’re 6 miles into a 10 mile training run in July.

Falling sucks. It hurts. A lot. But you know what I think is actually worse than falling? WORRYING about falling.

I didn’t put the kibosh on running immediately after my diagnosis, but right away, I did start scaling back. I quickly reached the point where I wouldn’t go for more than a couple miles at a time, and not more than a couple days a week. Then less, and less. These days, my running routine is practically nonexistent. And if I do rally enough to lace up and go, the minute I start to feel my toes getting numb, or feel like I’m not picking my feet up enough, I stop.

I could argue that it’s for my own safety, and in a roundabout way, I suppose it is. But concern for my safety isn’t what keeps me from running. It’s fear. I’m afraid I’ll fall. I’m counting on it. And the fact that I’ve let that fear dictate my choices, that pisses me off. That hurts more than scraping across pavement.

Anyway, this isn’t meant to be a sympathy ploy. I don’t want anyone to feel sorry for me, just as I do my damnedest not to feel sorry for myself. Or, go ahead and feel sympathy if you want to, but then do something about it. Pity is meaningless if it’s not joined by action, and there are lots of things you can do to take action. Learn about MS. Ask someone who is living with it to tell you about it. Make a donation to the National MS Society and help fund research into MS causes and treatments.

I don’t run much anymore, but maybe in my lifetime, I’ll see medical advances that will allow me or other someone else to keep doing the thing they love doing, without falling, and without fear.

When Doody Calls, My People Answer

Posted by Erin on April 24, 2017

Early last week, I wallowed in the depths of a considerably rough few days—there was the work stress, the setbacks in puppy housebreaking, the violently deceased iPhone, the breakup, the “Am I having a relapse?” anxiety. So, I did what people do these days when they’re in the depths of those rough days: I took to Facebook, ready to unload some of my sadness and frustration.

In general, I try to avoid airing my personal struggles on social media (talking about my health, in particular, violates one of my Facebook Commandments). Don’t get me wrong, I have nothing against people who do use Facebook as a personal venting platform (ya know, within reason); I think it can be a good way to purge your woes to supportive friends who you might not be able to sit down and purge to in person over a box of wine (don’t judge me!).

So yeah, this was one of those times for me, though I didn’t really have a plan for what I wanted to say. “WAAAAAAAHHHHHH!!!” seemed a little overdramatic and I didn’t want to be guilty of “Vaguebooking,” so I dug a little deeper.

And whaddya know. As I began writing, the tone and the purpose of what shall henceforth be known as “The Doody Pile Post” began to take shape, like a Voltron of emotions. My intention morphed, like a Power Ranger of catharsis, from a vent session into an exercise in putting things into perspective, and thereby putting myself into a better state of mind. Like a Punky Brewster of, ya know, everything.

“Maybe the world is blind…” [d’do-do-do-do-do]

And it worked. Immediately upon posting, I started to feel better. Buh-bye, negativity.

But then something more happened. In the post, I had shared that I would be participating in the Walk MS Long Beach event next Saturday, something that I anticipated would extend the good-feely-ness I was gunning for. I made a brief and pressure-free request for friends and/or family to come out and walk with me (if you know me, you know I’m a “the more the merrier” person through and through), or to donate to this cause that means so much to me.

And guys, you all went bananas. In the best possible ways.

Firstly, the messages of love and support that so many of you left in the comments brought tears to my eyes. And it was nice because they were happy tears instead of the sad, ugly kind that I’d been leaking all day previously.

Next, I got two new teammates: Nicki, who by lucky coincidence will be in LA from Oklahoma next Saturday, and freakin’ Mona, who lives in San Jose, but said “Fuck it” (probably literally) and booked a flight to come down to LA just to walk with me. Commence the bursting of my heart.

I also watched my Walk MS fundraising page start lighting up. Donation after donation came in with the kindest messages of comfort and encouragement, and I was blown away. Within about 48 hours, I went from a big ol’ goose egg to over $1,300 raised, and shot up the fundraising leaderboard to #12 on the list. This was so beyond anything I expected or anticipated, and it is straight-up reaffirming my faith in humanity. And more than that, the generosity of my friends has gone even further to show me that yeah, my life is good and I’m pretty damned blessed.

So thank you, friends and loved ones. Thank you for being there to hold me up when I was down, for making an investment in a cause that may very well be pivotal in improving and prolonging my days on this planet, and most of all, for reminding me that yeah, even though the bad, doody-filled days can’t be avoided, they pass, becoming less and less stinky as they recede into memory.

(By the way, if anyone would still like to register to walk with me on April 29, or donate to my fundraising efforts, you can do either/both here: www.nationalmssociety.org/goto/EDB )

A Sign From a Dead French Neurologist

Posted by Erin on May 26, 2016

I was probably texting while driving.

Okay, before you come at me with the pitchforks and torches, let me gracefully backpedal a bit. I’m sure I wasn’t texting, but I almost certainly was looking down at my phone, fiddling with Spotify or something, in my lap, at a stop light. You know, like a responsible law-breaker (sheesh). Anyway, that setting—in my car, looking down—was the first time I felt…the sign.

In this case, I’m not talking about a sign from God or the universe (although, if I wanted to be really philosophical about it all, I might claim that, ultimately, it was), but a very earthly, physical sign. When I lowered my head down, chin to chest, I was surprised by a sudden sensation—I’ve described it as an electric, numbing feeling—moving instantly from my neck, down my back and into my red-light stopped rear-end. It didn’t last long; when I lifted my head again, it was gone. And it didn’t hurt, it was just weird.

This was, I think, sometime August, 2015. The WNT (Weird Neck Thing) kept happening. Anytime I’d lower my head all the way forward, zap! WNT. Electric numbness down my back. I hoped it was a fluke and would go away on its own, but when it didn’t, I did what I usually do when unfamiliar bodily things happen: I kind of just ignored it.

That’s pretty much been my M.O. as an adult, re: medical issues. If it’s not gushing blood, protruding bone fragments, or physically preventing me from doing stuff I want to do, I don’t bother going to the doctor about it. It’s worked out pretty well for me so far. I’ve been generally healthy for my adult life so far.

So, side note: I do have narcolepsy. I’ve had it since I was a teenager, though it wasn’t officially diagnosed until 2001, shortly after my 24^th birthday. My narcolepsy isn’t terribly severe (it’s nothing like this for me), and for 15 years I’ve been able to mitigate the symptoms pretty well with medication and preventive napping. I only bring up the narcolepsy at all because it explains why I have regular visits with a neurologist, something that most people don’t normally do. Despite what I said above about ignoring medical complaints, I do see my neuro (‘sup Dr. Ullman!) a few times a year to monitor my narcolepsy meds and such.

So anyway, it was at one of these routine visits with Dr. U that I was like, “Hey, you know about nerves and stuff. This weird thing has started happening with my neck. Should I be worried?” I described the WNT, he asked a few questions (Have you experienced tingling anywhere else? [Yes.] Any vision problems? [No.]), then said, “Yeah, we should probably send you for an MRI and see what’s going on.”

I wasn’t really worried. My neck has been screwed up for years, and I knew this. Blame it on a lifetime of high-impact sports, really deplorable posture, and zero attempt on my part to make stretching/flexibility a life priority. I expected the MRI results to show that my neck was a mess.

But when Dr. U’s office called two days after the MRI and asked if I could come in tomorrow to talk to the doctor about the results, I paused for a minute. Couldn’t it wait for the follow-up we had scheduled later in the month?

I went in and I was expecting that Dr. U would tell me I had disc damage and maybe, worst case scenario, I would need surgery to fix it. Disc issues didn’t come up at all. Instead, he told me that the MRI showed scar tissue on my spinal cord, and the meaning of this observation did not resonate with me right away. I immediately associated scar tissue with some sort of trauma or injury. But I hadn’t suffered an injury to my neck… erin MRI neck

The long and short of it was that the scar tissue was indicative of a demyelinating condition, the most common of which is MS. This damage to my spinal cord was what was causing the WNT, which, he also told me, had a name: Lhermitte’s sign. (pronounced lare-MEET) It was given its name by a French neurologist (Jean Lhermitte, pictured below in his youth, sporting an epic array of facial hair) a few years after being identified by some other French neurologists early in the 20^th century (not sure why it wasn’t named after those guys…feels like a real Tesla/Edison saga).

The WNT—“the sign”—which I refer to now just as Lhermitte’s, or as my kids have dubbed it, “Lermy’s,” was the catalyst that ultimately led to my MS diagnosis. But that’s another story.

So You Want to Know About MS: A Brief, Uncensored Lesson From a Narrowly Qualified Teacher

Posted by Erin on May 25, 2016

When I met with my neurologist, Dr. Ullman, after having an MRI of my cervical spine (that’s the fancy term for “neck”), he told me that the test revealed scar tissue on my spinal cord.

My first thought was, “Scar tissue? That’s weird. I haven’t had a neck injury. Scars come from injuries, right?”

He continued. “Something-something…this type of scarring is most commonly seen in MS….”

Whoa, hold up.

Now, because I want to be honest with you, patient readers, I confess: I didn’t really know what that meant.

Here’s what I did know:

I knew that MS was a disease, hence, I knew this news wasn’t good. As awesome as it would have been for the doctor to say, “Your MRI shows that you have the spinal structure of a 22-year-old Pilates instructor,” I knew something worse was going on in there. Doc’s assessment confirmed that.
I knew MS stood for multiple sclerosis. Even not knowing exactly what that meant, just thinking about the full name was a lot scarier than its abbreviated form. I didn’t know what sclerosis was, but this mofo meant MULTIPLE whatever-they-were!
I remembered that President Bartlet had it on The West Wing (I even recalled that his was Relapsing-Remitting MS, even though I had no idea what that was) and in the storyline of the show, that made people upset. Bad for President Bartlet, but good for TV drama, I suppose.via GIPHY
I knew that MS was a condition/cause that prompted people to raise money and walk 5k’s and stuff, so it had to be something considerably more serious than the flu.

That’s kind of it. I didn’t really know anything beyond that. No specifics about what MS was or what it did, or most pressingly, what all of this meant for me.

So I did what any person in my position in America in 2015 would do: I left the neurologist’s office, sat in my car, and immediately Googled “MS” on my phone. And thus began my instruction.

First, some basic anatomy. Every one of us has a brain (truly, despite some people’s behaviors that would suggest the lack of one) and a spinal cord. Together, these parts make up the central nervous system; a.k.a., the CNS; i.e., the anatomical supercomputer that keeps you and me, ya know, alive and human; ergo, something you generally don’t want to fuck with.

An anatomically impeccable rendering of the CNS

Billions of nerve cells in the brain and spinal cord (or, neurons) work together to send messages to the whole body for all the jobs that our various other parts do; we’re talking every message for every job, from “Heart, keep beating,” to “Mouth, that latte is too hot! Retreat! Retreat!” to “Nah, it’s not weird to spend your entire lunch break Googling pictures of Chris Evans in the Marvel movies.” Yeah. The CNS gets your shit done.

Now, if you looked very closely at one of those billions of neurons, you’d see a protective coating around parts of the cell. That coating is called myelin. Remember, these nerve cells are busy every second of the day sending electrical signals to each other (which, when multiplied by millions of cells, result in every body function and process you can think of), and myelin acts as insulation around the cells, ensuring that the signals travel along merrily as they’re supposed to. Yay myelin! Way to be a team player!

Node of Ranvier sounds like a location in Westeros.

We’ll get back to myelin in a second, but first, let’s talk about what a jerky jerkface disease MS is. I mean, all diseases are jerks, but MS a special breed of asshole known as an autoimmune disease*, which means the body’s own defenses, instead of going after the real enemies like viruses and harmful bacteria and other infections, turn and attack the GOOD parts in the body. Parts that are just trying to do their thing to keep the ol’ girl running (well, running and walking and breathing and digesting and giving hugs and high fives and thinking and everything else it does…).

WTF, immune system?! I thought we were on the same team here, bro!

When a person has MS, their immune system destroys myelin. Sweet, protective myelin, who never did anything except make sure those cells were all cozy so the neurological signals could get to where they’re meant to go. Nope. There goes the immune system, demyelinating nerves and wreaking havoc on the CNS (and by extension, the whole body). “Multiple sclerosis” is actually a name describing the aftermath of the autoimmune damage; sclerosis meaning “a hardening of tissue” (or, scarring…now Dr. Ullman’s comments make more sense, huh?) and multiple, of course, meaning “many.” So, multiple sclerosis essentially means “much scarring.” Ouch.

Just like exposed or uninsulated wires in the walls of your house might make your lights flicker or cause certain wall outlets not to work, demyelinated neurons (times thousands or millions) can’t send messages to the body the way they’re supposed to. But instead of lights flickering, the messed up neurological signals might cause MS sufferers to experience numbness and tingling, fatigue, problems with coordination or movement in general, cognitive impairment, even issues with bodily operations that you don’t consciously think about, such as bladder and bowel functions (are we having fun yet?).

And those are just a few possible symptoms. Because MS doesn’t affect people in all the same ways, and because lesions (areas where scar tissue has formed because of demyelination) can develop anywhere on the brain or spinal cord, every person with MS experiences the disease a little differently. Some symptoms are more common, others (like my weird neck thing) are rarer. And because there are SO many possible symptoms, the person with MS is constantly wondering if every new little twinge or pain or stumble is a new symptom caused by their disease.

Once damage has been done to the CNS, there’s not a way to repair it (…yet. Come on, science!), but there are a number of medications that are effective in slowing the progress of the disease. So there’s that.

MS, though incurable (…for now. Go, scientists, go!), is not a terminal disease. In other words, except for very rare, very aggressive cases, MS won’t kill you. But it will change your life and your lifestyle. Being at the very beginning of my MS journey, I’m learning and will continue to learn what this disease will mean for me and my life. I hope to share those experiences with people here on this blog, so stay tuned… And in the meantime, if you want to learn more about MS from people who know what they’re talking about WAY better than I do, visit www.nationalmssociety.org.

* Some experts think MS actually should be considered immune-mediated, but tomato-tomato.

The Conversation I Probably Haven’t Had With You

Posted by Erin on March 24, 2016

I’m finding that there’s really no easy way to tell people you’ve been diagnosed with an incurable disease. Shit like that will stop a normal, human conversation dead in its tracks. And anyway, it’s nearly impossible to casually work it into a chat. No smooth segue. “Can you believe all this Trump insanity? Oh, and speaking of things that massively suck…”

So, here comes the cold water: I’ve been diagnosed with multiple sclerosis.

It’s at this point in face-to-face conversations where I usually get reactions that are some version of, “Oh no/I’m so sorry/That DOES massively suck” and the like. Then the initial expression of sympathy is often followed by a kind of uncomfortable look that says, “I’ve heard of MS, but I’m not exactly sure what it is or what this means.”

I get it. That’s the camp I was in myself until the MS Fairy decided to leave her awful treat under my pillow and I was forced to do a lot of learning really quickly. (Need a lesson yourself? It’s okay. I got you.)

It all started with me telling my doctor about a weird thing that had started happening with my neck. After that came three nervous months of expensive tests and inconclusive doctor visits, but mostly just waiting, before I was finally diagnosed in late February. At the end of all that waiting, I was just relieved to have an answer, to know what was going on (and I actually got an answer relatively quickly; from what I’ve read, some people go years without a definitive diagnosis). I think most people would agree that knowing is better than wondering. It just sucks when knowing means knowing you’re sick.

So yeah, where was I? Big life change, hard to work into conversations… Of course I have told some people. Immediate family, obviously. Some friends. Other friends have learned about my MS through the friends that I’ve told. In the first few days post-diagnosis, a few people who made the innocent mistake of asking me that should-be harmless question, “How are you doing?” found themselves caught in the unfortunate crossfire of truth and timing; I couldn’t honestly answer with, “Fine, how are you?” (I’m garbage when it comes to masking what I’m feeling. Heart, meet sleeve.) So, those people got the news, whether they really wanted it or not.

But that left a lot of people (some of whom are reading this now) whom I didn’t know how or when to tell. Social media makes it really easy to announce stuff to your wider circles of comrades, but I didn’t really want to do that. First of all, it breaks one of my Facebook Commandments , and aside from that, this isn’t exactly sharing news of an exciting new job or a bun in the oven. No photos of me biting into a mystery cupcake to reveal blue or pink frosting inside. What color frosting tells you, “Congrats! Your central nervous system is broken.” #worstcupcakeever

Which brings us here. Even before the MS diagnosis was confirmed, I was already thinking about starting a blog. I did a whole lotta contemplating during those months of waiting for a diagnosis, and I realized that, if it did end up being MS, a blog would be a good way to share information with people. As I see it, there are 3 main reasons why:

It’s efficient. Once I did start having the post-diagnosis conversations with people, I found myself repeating the same version of the story over and over again. Which is fine, it’s important news to share. But it also gets draining. And I’m sure I’ll still have those conversations (again, totally fine), but at least the story, any updates, my rambling thoughts and observations, etc. will also be living in one place for anyone I don’t have a chance to tell in person.
It lets you off the hook. Look, I get it. I have been on the receiving end of the “So, I have something to tell you…yadda yadda yadda*…[disease.]” conversations many times. And many times, I just haven’t known how to respond. This is especially true if I don’t know a lot about the revealed disease. No one likes admitting that they don’t know a lot (or anything) about something, so I’m assuming that a lot of the people in my life are in a similar boat. So, when I have the conversation with you face to face and you don’t know what to say, it’s awkward for both of us. Telling you about things here allows you to take it all in at your pace, then privately Wikipedia the shit out of MS, and then we can all get on with our lives and have a good laugh about it next time we’re at a barbecue together.

(**Please don’t take my “yaddas” as me trivializing the weight of conversations like this. I’m just trying to get to the point. This post is too goddamn long already.)
I’m considerably better at writing than I am at actual, personal interaction. A blog does me a real solid by giving me the chance to take as long as I need to think about what I want to say rather than blurting out whatever ill-formed drivel happens to be floating around my noggin at that moment, and get it right (or right-ish). You’re welcome.

So there you have it.

I do have things to say about non-MS topics from time to time too, so I anticipate that this blog won’t end up being solely focused on my MS. I don’t plan on my life being solely focused on my MS, so why should this be? Writing is a great outlet, cheap therapy, rigorous mental exercise, and something I truly enjoy, so this endeavor will be good for me. I hope it will be good (or good-ish) for you too.