Tuesday, June 14, 2016

Let's Talk About Injuries

OK, so I haven't written here in a WHILE, but I'm having one of those moments where I'm feeling the writing bug, so here I am.

**Disclaimer** before I start, I wanted to say that I'm writing with the awareness that I'm at risk of turning this blog into a completely MS-related blog...but that's kind of a big part of "what I'm doing," so it'll be present in a lot (hopefully not all) of my posts.  Anyway...

So yeah.  Let's talk about injuries.  Since my diagnosis back on October 2014, I've developed this deep need (for lack of a better word) for the rest of my body to be perfect.  Or at least to work perfectly.  Even pre-diagnosis, I had a hard time being at all limited because of an injury, but now, it feels even worse (adds insult to injury...yuk yuk yuk).  Injuries since October 2014 have had a much deeper psychological effect on me.

I bet you're wondering what happened to me.

Last week I dislocated my shoulder.  Well, I subluxated it, but when people see me in my sling and ask what happened, I don't bother getting all doctor-y with them, and just tell them a term I know they've heard of.  Basically the difference is that with a subluxation, the ball doesn't go completely out of the socket, so it eventually finds its way back in.  In terms of damage to the surrounding nerves, muscles, ligaments, etc. in my shoulder joint though, it feels pretty much the same.
Shoulder courtesy of Google - I couldn't find a picture of my own dislocation anywhere

The first time I dislocated my shoulder was my Freshman year of high school, so this is something I've been dealing with for almost 10 years.  You see, once you dislocate your shoulder, you're WAY more likely to have it happen again (and again...and again...).  So this isn't a new thing for me.  I know what to do when it happens and how to treat it afterwards.  I've gotten surgery on it once, but I'm told that it isn't that weird for that surgery to not be a permanent fix.  So, in the wake of some other subluxations a couple years ago, I had already come to grips with the fact that I'd eventually have to get another surgery (a different one that's apparently awesome).

So I'm out of commission.  I have been for a week, and if I'm going to be safe and responsible, I will be for at least another week.  As I said, I know what I'm supposed to do to treat this kind of thing...BUT I DON'T WANNA!!!

I've been sleeping in a sling, all wrapped up in an ace bandages so I don't accidentally flop around wrong and pop everything out of place again; I've been icing whenever I'm not out and about; I've been really resting it and getting all hopped up on Tylenol and Naproxen.  I'm being a good girl, AND IT SUCKS.
Me with nighttime sling and expertly wrapped (by ME) ace bandage
Me with ice and corn strapped to shoulder for convenience

These past few months, I've been getting myself into better shape than I've ever been in that I can remember.  I'm not exaggerating.  I've been exercising regularly at least 4 times a week, and here's the kicker: I'm actually enjoying it.  I've been doing Krav Maga, and I love it, and it's an amazing workout, and it's empowering, and it's awesome, and it's perfect, and I love it, and I love it.  I'll definitely talk more about it in some other post, because it's become my new "thing."

I've been feeling so strong (mentally and physically) with all the Krav I've been doing, and now I can't do it for what feels like forever.  I mean, for someone who's been doing it 3 or 4 times a week for 4 months, 2 weeks is a long time!  Plus, who knows if my shoulder will actually be ok to get back in the game by then.  I just really need my outlet.  Now that I've found it, there's an even bigger hole there than before I found it.

And it doesn't help that I've been dealing with roommate/apartment/landlord stuff up the wazoo this past week (literally to the day, it all started exactly at the same time - these past seven days have been rough).

Alright, this post was super doomy and gloomy.  I promise I'll be more positive next time.  Well...I have some unpublished posts that I've been meaning to polish up and share with the world that are also doomy and gloomy...NO NO NO I do promise that the next post that gets published, for better or for worse, will be a happy one.  I'll talk about the good things in my life at least once before I dive back into my woes.

Hold me to it, OK?  I need help with these things sometimes.

Thursday, October 29, 2015



I've been bad about posting lately because, despite the fact that I ran a half marathon last weekend, I'm still very lazy.

Nellie and I both finished the race in under two hours (me, barely; Nellie, faster).  It was super fun, actually, although we both questioned it right up until the start and felt ridiculously tired and sore afterwards.  We timed our meals really well the day before/morning of, which was great.  We were sitting having breakfast at around 6am on race day and Nellie said, "I can't believe we're doing this by choice...humans are so weird."  It's SO true!  Why do we do these things?  There are plenty of other ways to be healthy and get exercise.

Anyway, it doesn't matter.  I definitely am glad that I did an actual training program, because I felt totally fine until around mile 7 or 8.  At the halfway point as I turned around, I was even able to coherently talk to Mike (Nellie's husband), who, with my parents, did an AWESOME job zooming around to various points on the course to cheer us on (even taking time to stop for coffee, my dad is always quick to add).

I had set myself a super duper easily attainable goal of under a 10-minute/mile average.  By the time I got to 5 miles, I knew I was going to beat two hours.  There was a little timer thing there, and I was WAY ahead of pace.  At that point, I knew that if I just kept it up I'd be fine.
Right after I finished -- going into the tent for snacks!
It's an interesting psychological thing that goes on in long runs like that.  Physiological too.  You just kind of shut down, and your body goes into survival mode, not releasing any fluids or anything.  I didn't really feel like I was sweating that much during the race.  At the finish, it was very emotional and awesome.  I got all choked up when I crossed the line, and found out later that Nellie had a similar response when she finished.  It's a pretty big accomplishment!

I spoke to someone a couple years ago who told me she wanted to train for a marathon.  I asked her if she'd done any long distance runs like that before, a half marathon or anything.  She said no, but "nobody does half marathons.  They don't make a big deal out of it."  So not true haha!

Nellie also said, after the race, "we did it!  Now we never have to run ever again!"  I'm totally on board with that.  But I just went for a run today - just three miles and change - and it's really hard to make yourself run when you don't actually have to!  So we'll see.

Saturday, October 17, 2015

My One-Year Anniversary: Part 2

Part 1, if you want.

I feel like I left things off a little gloomy in my last post.  Well, let's get one thing straight: I'm doing fine.

At first, it was really hard.  It felt completely out of the blue (although looking back, it had been around for a while -- 5 years or something -- there just wasn't enough evidence/symptoms to do all the testing we did this time around back then), because we hadn't even really considered that it was actually something serious, especially after the neurologic exam went so well (before the MRIs).

I think what was hardest for me was that there was no way to have prevented this.  You know that phenomenon where people try to explain bad things that happen to other people in a way that makes them feel less at risk of those bad things?  Like when someone finds out that a person has lung cancer and they say, "oh was he a smoker?" so they can tell themselves they're not at risk because they don't smoke.  Of course, this is largely subconscious, and seems like a natural reaction to have.  Here's the killer for me: I didn't do anything wrong.  MS isn't something that can really be predicted or prevented.  Modern medicine knows a lot about the disease today, but there's also still a lot that's unknown, so...Anyway, because of this lack of explanation for the cause, it felt like my body had betrayed me.  That's one of the worst feelings in the world.

Ok, ok, hang on.  I told myself that this was going to be a more uplifting post.  On to that...
Look at me, being positive!
So, while it was a very emotional, difficult time for me, there's also a strange comfort to be had in the fact that there isn't a cure.  I know that sounds weird, but when you can't get rid of it, you just have to deal with it.  But here's the other thing: with MS, what I've learned from various doctors is that everyone's experience is different, and nothing is sacred -- meaning that, in theory, the disease could affect any part of my body to any degree.  So, how do you process something that hasn't happened yet?  ....or something that might never happen? ....but maybe will?

The answer, as I've been slowly learning, is just not to try too hard.  There will never be some moment where I'm completely at peace with everything...because what is everything?

I got a therapist back in New Orleans who was affiliated with the MS clinic I went to there.  Actually, I have to say that that was one of the most difficult things to leave - that medical community.  Everyone there, the nurses, the neurologist, the PA, the social worker, was so awesome and compassionate, and everything had such a personal touch.  Anyway, having a therapist was helpful, so I could talk it out and all.

Here's another thing that I did that I had a good feeling about beforehand.  I'm happy to say that I was totally right.

It sort of came to me one day that a tattoo might be a good way to help me process a little bit.  I'm really into tattoos.  I have a lot, and I already have plans for more.  I thought that having an MS-related tattoo would help, because then I would have something that was very definitively positive, and something that was so definitively associated with MS.  But what could it be?  I thought about an orange ribbon, which is the awareness ribbon for MS, but that was a bit too cliché for me.

For the first few months after being diagnosed, MS was basically all I could think about.  It was the first thing I thought about when I woke up and the last thing I thought about when I went to bed.  When I was with people who didn't know, I felt stranded, because I had no allies.  Not that I actually needed any, but it was just nice to be around someone who was aware of what I was going through.  So sometimes, in those moments of feeling like I was in a bubble, if I felt like I could make it work, I would tell someone.  I know that a lot of people with MS choose not to tell anyone, because you totally don't have to.  It's a "silent disease."  That is, most of the time, other people can't tell that anything's going on with you -- or they never can tell.  (You probably already know someone with MS, even if you don't know it.)  I came up with an analogy for why I'd decided to be open about having MS and all that...it's an elephant in the room.  Period.  The thing is, when I'm the only one who knows about it, it's only my elephant in my room.  If I could just share the elephant with other people, we could move into a bigger, shared room, where the elephant could still hang out, but be a little less oppressive.

I was contemplating that analogy one day, and happened to also be contemplating what my tattoo would be, and it hit me!  So I got the tattoo 2 weeks later.  That's the smallest amount of time I've ever taken to think about a tattoo, and the most confident I've felt about one when I got it.  I had the artist put it in a place that wasn't super visible, so I could choose to show people or not (just like I could choose to tell people about MS or not), so unless I've shown you, you don't know about it.

OK fine you can see it.

I'm kind of in love with the little guy.

As I said, the tattoo had exactly the effect I thought it would.  I smile every time I look at the tattoo, and if I was feeling bummed or gloomy about it, I just took a peek at my elephant.  He was inexorably tied with my MS because of my little analogy above; he was also a super positive symbol for me in general.  I had successfully tricked myself into changing my attitude.

That whole, talking-about-things-to-feel-better-about-them principle applies to other things in life as well.  It's sort of the reason I'm writing this whole blog in the first place.  Writing about the fact that I'm training for a half marathon (one week to go!) in a public forum gives me a bit more accountability.

Speaking of the half marathon, I didn't decide to do it for any reasons remotely related to MS.  But it definitely became a part of it.  My therapist in New Orleans told me to try not to think of the MS as something I hated, because it's a part of me and who I am now.  That said, I feel ok about my mindset surrounding MS and this race.  The running definitely became a vendetta against my body, for my body, if that makes any sense.  If I'm going to have a chronic illness, I want the rest of my body to work pretty damn well.  I wanted to prove to myself that I could do it, despite a continuing occasional negative psychological state, and despite any misconceptions about MS.  There is this one thing that happens when I get really hot (a super common thing that happens with MS patients) where my legs and, depending how hot I get, other parts of my body get this weird, tingly, sort of electric feeling through them.  It's called Uhthoff's phenomenon.  It doesn't mean I'm having a new MS relapse (a.k.a. exacerbation, a.k.a. flare-up); it just means I'm having symptoms.  Whatever.  It doesn't mean anything terrible, but it doesn't necessarily feel good.

Anyhow, everything's fine.  I'll probably write more about this soon, but later.  I've had enough for now, and I think some of you guys might want a break from the heavy stuff.

Thursday, October 15, 2015

My One-Year Anniversary: Part 1

Hi folks,

I have to tell you something.  Exactly a year ago today, I was diagnosed with multiple sclerosis.  I apologize if I know you, and you're finding this out for the first time through my blog; but it's one of those things that, while I would have liked to get it out in the open with everybody I'm close to right off the bat, I can't just drop on people randomly at a party or something.

Here's what my day was like last October 15.  I remember it, because it was the worst day ever.  Recently, I've noticed this tendency I'm developing to internalize my feelings.  So, when I'm experiencing something profound, be it positive or negative, I often have a physical response, because I don't otherwise openly admit that I'm feeling what I'm feeling to the extent that I'm feeling it.

Actually, let me go back a little further than 10/15/14.  I had been feeling weird tingling sensations (for lack of a better word) since July.  It had started in my fingers and moved through my arms, legs and feet.  My dad had told me to keep tabs on it, but we didn't do anything about it at first.  Then I got this thing where, when I dipped my chin to my chest, an electric, buzzing sensation shot from my lower back, up my spine and out to my hips and all the way down my legs.  Then I called my dad and said that I'd like to talk to a neurologist about it.

Here's the thing.  I passed the neurologic exam with flying colors.  I was even feeling less tingly by the time I got the exam (a couple days before the 10/15), and I felt a little bad -- like a boy-who-cried-wolf kind of thing.  The neurologist said I seemed ok, but that we should do a neck MRI, just to check (I was having some achiness at the time and she thought it might be a pinched nerve or something).  We seriously thought all was well, but then the neurologist called and said there were some "irregularities" in my neck MRI (cervical spine), and she wanted to get images of my brain and thoracic spine (the rest of the spine).

It was so weird, I looked at the images from my cervical spine, and there were literally these three, blurry little white things that I guess weren't normal.  Looking at it with an untrained eye, I thought, "really?  That means something?"  However, after I did more MRIs, a few blood tests and a lumbar puncture (a.k.a. spinal tap), it was clear that those little white dots (also called "lesions") meant a lot.  We tested for a number of things that the dots could also have meant: celiac, lyme disease, etc...came back negative.  There was something specific they were looking for in my spinal fluid that would confirm that it was MS.  They're called oligoclonal bands.  Google them if you want.

One of the most powerful and scary moments that I remember from those couple of days was when the neurologist showed me my brain scans.  Before she showed me, she said, "the grey is your brain, the black is spinal fluid, and the white is the irregularities."  Then she clicked through all the images, and I just remember thinking, "that's a lot of white..."

"Is that a lot?"  I asked.
"Well...it's not a little," she replied.


So flash forward a couple days.  We were still waiting for the lumbar puncture results to come back, but I had to go back to New Orleans (oh yeah, I was in Maine for all that stuff -- I went home for Fall break).  There was a crazy weather system somewhere, and my connecting flight got cancelled.  I got on a new flight for the next day, and a room for that night in some hotel in Charlotte, NC.

That night, I started getting sick.  The next day, for the first (and only) time, I threw up in a barf bag on the plane.  And it was after we'd landed for God's sake!  So here, I'm getting to that whole, internalizing-feelings-and-then-having-a-physical-response thing.  I had had talks about the potentials of having MS with my parents and Sam and Nellie and Mike (her now husband), who were visiting home that weekend as well.  But we hadn't actually confirmed it yet, remember?  Because we hadn't heard about those oligoclonal bands yet.  That weekend, after I got all the tests done, we went out to our place that we have on an island off the coast of Maine and spent a couple beautiful Fall days playing touch football and reading and hiking and all that.  It was fun, despite potential gloominess back at the hospital.

Anyway, I got a cab from the airport.  I threw up in my water bottle in the cab.  The driver asked me if I wanted to stop and I said, "please just take me home.  I won't get anything on your car I promise."  I got home, stripped off all my clothes, and fell into bed.  I called my mom (because I promised I would when I got home), crying because I just felt so miserable and tired.  I slept for a couple hours.  I woke up, walked to the little corner store by my apartment, bought some gatorade, went back home, and slept for a few more hours.  I was woken up in the late afternoon by my phone ringing.  It was my neurologist (oh, we're at October 15 by now, by the way).  She said the spinal fluid results had come back and the oligoclonal bands were there.  So it was official.

I promise I'm going to write more about this in my next post.  I'm going to talk about the more psychological side of things and the experience of telling people, going to school, symptoms, my doctors, why my blog background is elephants (it's relevant, I swear).  But this is a long post, and there are no pictures, so I feel bad.  I'm also tired...so, more soon. I promise.
Here's one picture though...because I need a thumbnail image for the link...it's not my brain; it's the internet's.  I don't think I want you to see my brain.  It would be like seeing me naked or something.

Tuesday, October 13, 2015


Well, I'm off my running schedule again, but I have a good reason.  Anna got married!

It was a great weekend, although the week leading up to it was ridiculously stressful.  It's weird- I didn't get quite as stressed out by Nellie's wedding, but I think that's because I didn't take on quite as much responsibility in the planning process; I just went where people told me.  This time, I was the one telling people where to go.

I also had to have what I call my "extrovert face" on for longer than I'm used to.  I definitely consider myself an extroverted introvert, and I'm not a big fan of small talk and stuff like that, especially with almost 200 people, two thirds of whom I don't know.  It's exhausting.  That said, I made sure to get a good amount of sleep the night before the wedding (I was running on 4 hours the day before), and I ran four miles in the morning, so I could be at the top of my game.
It was a beautiful wedding and a wonderful reception afterwards.  Now, I'm still in Maine, working on the Boston housing hunt and processing the let down from the outrageous amount of emotions that happened last weekend.  Weddings do that.

Sunday, October 4, 2015


Well, I guess this was bound to happen at some point.

Nellie and I, according to the training schedule, were supposed to run 12 miles yesterday.  Neither of us did.  Nellie has been dealing with a hip that has given her issues in the past.  She, understandably, was concerned about aggravating it by over-exerting.

The other day, I was playing frisbee in Boston, and I made a really hard cut (1:05, for you non-frisbee folk), but I just got a little too into it.  My foot jammed into the front of my cleat.  That's never happened before, so I think my cleats are just getting old or something.  After the point, I went off to survey the damage.  I was seriously expecting a bunch of gushing blood and only half a toenail.  Nope!  It just hurt....really badly.  I could tell that the nail had been jammed into the cuticle at the bottom, and it wasn't going to survive.

I slept on Sam's couch that night and was awoken in the middle of the night by a throbbing pain...

The next morning, I took of the nail polish I had on my big toe, so I could really see what was going on.  It was alllll blue under the nail.  Poor toe!  So when that happens, there's a whole lot of pressure under the nail because of all that blood, and it's not uncommon to just have it drained.  I've actually seen my dad do that for my mom with a little burn-y thing that puts a hole in the nail and lets the blood out.  I obviously didn't have that kind of thing at my disposal, so I just had to treat my poor toe very tenderly for the day while I apartment hunted in the city.

Of course it was raining, and of course I was completely unprepared and was wearing the slipperiest flip-flops that I own.  I slipped, caught myself, somehow nicked my toe, and started bleeding everywhere.  Luckily, I had a huge first aid kit in my car.  I gauzed my toe and taped my toe, and crisis was averted.  Over the course of the day, blood started seeping through the tape...I have to admit that having a bit of pressure off was slightly relieving, but still pretty painful.  Pain is tiring!  At the end of the day, I called my dad, and he told me that I could soak it in the tub and try to keep draining it from wherever it had bled from before.

So anyway, my poor toenail is all white and dead now, and still oozes periodically.  I turn into HulkTessa whenever Oscar (or anyone) accidentally steps on my foot.  I'm hoping it isn't too much to wear heels next Saturday at Anna's WEDDING!!

Needless to say, though, I did not run 12 miles yesterday.

Monday, September 28, 2015

Why I'm Running

Let's get one thing straight: I do not like running.

It's tedious and boring and uncomfortable.  At least when I'm climbing or playing frisbee, there's a more concrete goal in mind -- getting to the top or scoring...with running it's just about finishing the run.  It's not great to be doing an activity when the goal is to not be doing that activity anymore.

So why would I decide to train for a half marathon, of all things?  Well, first of all, I'm doing it with my sister.  It helps to have someone to commiserate with/swap training tips with.  At one point, all four of us were going to do it (my brother, two sisters, and me), but due to other various commitments (e.g. a wedding), Sam and Anna decided not to.

Originally, I wasn't going to do it, because when Nellie (the sister who's still doing it) first proposed the idea to me, I was still living in New Orleans with no plans of going back to the Northeast with any permanence.  It would be hard to train for a half marathon together when we didn't even live in the same city, let alone the same region.  Where could we do the race?  But then I had my little epiphany about leaving the South and realized that we could in fact do a race together!

We caught it just in time.  Nellie made the good point that late October was about as late as we would want to do a race in the Northeast, and lo, there was one on October 24!  We had 10 weeks (two weeks shorter than what I gather is the more standard, 12-week training period, but we found a regimen that accommodated our poor planning).

So here I am.  There was more, as I started training, that cropped up for reasons to keep training, instead of giving up.  For example, after I paid for registration ($81 after tax -- yikes!) and bought nice, new running shoes so I wouldn't die of blisters and broken ankles, there was really no going back.  Financial investment is a good motivator.

Also, it's kind of cool just to be able to say I did it.  I mean, I ran 11 miles last Saturday, and I'm getting faster!!  2.1 more miles doesn't feel like much...

There's some other stuff that kind of came to me as I trained that made a good motivator, but I feel like I'll save that for another post, partly because I'm tired.