Side Effects May Include, But Are Not Limited To…

Here’s what you can expect when you begin taking Tecfidera for your Multiple Sclerosis.

Flushing

Ok so you are just chilling at work or driving your car… you took a Tecfidera pill hours ago… and BOOM your body turns up the heat.  Your face turns bright red, so do your arms and chest.  Your nose burns, your lips burn, your ears burn.  You’re all itchy… Like rashy, itchy.  Your crotch heats up… This didn’t happen the first time – it happens this time – COOL!  Then it goes away.  They say to take an aspirin with the pill to help – it didn’t.

Dry Mouth

Some people call it cotton mouth.  If you are a weed smoking king, you call it Kotton Mouth. Either way your mouth feels like dirt and water doesn’t help.  Your eyes and nose are dry too.  This goes away but not as quickly as the flushing.

Stomach Stuff

Sooooooo you kind of feel like you want to puke, but also like you aren’t hungry and your stomach kind of feels weird.  If you eat food with the pill it’s supposed to make it not happen.  I don’t like breakfast so I force myself to eat in the morning so this won’t happen.  So far, not so bad.  But I’m only taking 1/4 of what I will be taking eventually.

Admitting You Have MS

Before taking Tecfidera I didn’t have MS.  I mean, I did – but now I really have it.  I am taking medication to slow down the disease that wants to paralyze me.  I’ve owned up to it.  And I need to get through the side effects so that I can hopefully live a better life.

Making Your Mother Happy

My mom’s husband died last week.  I went to stay with her and help her during this time.  She told me I had to bring my medication and start taking it.  She watched her husband become paralyzed from the waist down and slowly die because of cancer over the last month.  She said don’t wait… waiting won’t do anything but make it worse. I took my first pill in front of her.

Also you might get PML and become paralyzed or die even though this what you are trying to avoid… MEDICINE!

 

The Pill Makes it Rill

I still haven’t been approved by my insurance for the medication that my neurologist wants me to take.  I was denied, he filed an appeal, and I’m still waiting… But fear not!  The medicine company has a plan.  They are willing to give me a 2 week free trial – a quick start program – to the medication until my insurance decides if they think it’s worth me taking the new and stronger medication to prevent the chance that I could lose feeling in my arms, legs or even lose the ability to control my bowels.

I get 2 weeks of the medication, and if by day 10 I still haven’t heard from my insurance – I contact Biogen again and they will give me ANOTHER 2 week dose of the medication that could potentially prevent me from being paralyzed or losing the ability to speak until my insurance decides if I really need it.

And if the worse happens and my insurance denies me the medication that could keep me from losing my eyesight or being in constant pain as MS attacks my nervous system, well then they will gladly talk with me about financial assistance to assist me with medication that costs around 6 grand a month that could help me live a more normal life without the use of a cane or having to use a feeding tube because the MS has damaged the part of my brain that controls swallowing.

I’m not rushing my insurance to make up their mind.  I’ve received the free trial but I haven’t taken them yet.

Why?

The pill makes it rill.  The pill makes the MS rill.  It makes my condition rill, my symptoms rill, my chances of being paralyzed rill, the chance that I lose feeling in my arms and legs rill, not being able to control my bowels rill, losing the ability to speak rill, maybe having a feeding tube someday rill.

Taking a pill 2 times a day for the rest of my life makes it rill.  Riller than I want it to be.

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So you just learned that you have a disease.  A good one… sayyyyy MS.  What’s the first step?

HASHTAGS!!!

Now, with MS… the hashtagging game is gonna be a bit tricky

#MS – an unmarried woman

#MS – postal abbreviation for Mississippi

You don’t want to embarrass yourself by posting a picture of your arm with an infusion catheter and have it be lost in a sea of pictures of unmarried women who reside in Mississippi… who would know of your struggle?

#multiplesclerosis seems too on the nose.  But you have to start somewhere. So you search it….  Ok looks legit, lots of empowering quotes.  Women doing cartwheels behind empowering quotes… We are on the right track.  But is this really the hashtag for you?  We’ll have to go in deeper.

Now anyone who uses hashtags will tell you, one hashtag is never enough.  You need a lot, you need to cover all your bases, but who should have ONE that is your main hashtag, and others to cast a wider net.

So you browse images of people in gyms, mostly women in gyms – not being a creep….

#MS (I guess it works sometimes)

#mutiplesclerosis (we know that one)

#MSwarrior (ok that one is new)

#fuckMS (yeah that makes sense)

#MSwontholdmeback (little long)

#multiplesclerosissucks (too many S’s)

But are any of these YOUR hashtag?  Do any of them speak directly to you without speaking to everyone?  This is YOUR disease – how can you properly share YOUR disease with a hashtag that speaks for SO many others.

So you make one.

Your own hashtag. A hashtag that will tell everyone I, BRYAN JACKSON, have MS.  This is MY experience, you can follow it with MY hashtag.

You are at this site so you already know that I own the domain www.MSjacksonifyourenasty.com (clever right?)

So you could easily just do #MSjacksonifyourenasty, sure – that would wrap everything up in a nice little bow.  But it’s long and a bit cumbersome.

#MRMS has a nice ring to it.  You search…  Hmmm seems like a thing for couples and young foreigners.  But we are close, it doesn’t seem to be directly related to MS.

#MisterMS – only 250 total posts on IG with this hashtag.. And the only consistent image is of some super sexy man in bathing suits with his comments in Spanish.

You decide to steal this hashtag.  You decide to steal it right now.

It’s yours now.

Go blindly… tag everything.  Your food, your legs, your shoes, your selfies (see gym selfies).

Tag now, ask for forgiveness later.

TFW

TFW Your insurance company denies the medication your neurologist recommends you take to slow down your MS…

It’s sort of a tingly, numb feeling in your back and legs when you bend your neck down.

My Dad and the Atlanta Braves

There are few things I can say that I got from my dad… my anger, my tendency towards addictions, my laugh, the band Aerosmith and a fondness for the Atlanta Braves.

Did my dad like baseball?  I guess as much as any man LIKES baseball.  Was he a mega fan?  Probably not.  He wore a Braves hat… And they were owned by Ted Turner so they were always on TBS – so he watched them.  Did he ever take me to a game?  I don’t think so, maybe I saw him play softball on his Coast Guard league, but I couldn’t tell you.  Did he ever see them play?  I couldn’t tell you that either.  We played catch a few times after my parents got divorced when I would go to visit him.  It was always with a softball, which always felt weird to me.  I was a preteen boy who had played little league and thought that only girls used softballs.

He’s from Indiana and he served in the Coast Guard.  Was he ever stationed in Atlanta or in Georgia?  I don’t think so.  As an adult, I assume his love of the Braves came from them being good in the 90’s and their TV schedule.  They were America’s team… Starting pitchers like Maddux, Glavine, Smoltz… young hitters like Chipper Jones, Javier Lopez, David Justice (who was married to Halle Berry at one point for fuck’s sake)… what wasn’t to love?  They were a young team full of superstars and great players who were literally always on TV.

Baseball got away from me as I grew older.  I was bad at little league, like really bad.  Little league has a minimum amount that each team is required to play every kid.  I played the minimum amount every time.  I believe it was 2 innings and at least 1 at bat.  I quit little league more times than I can remember, but my mom would always force me to go back.  I can remember my first hit I ever got in a little league game, it was the first of two in my entire career.  A little blooper over the pitcher’s head and into center field.  I can remember actually SEEING the bat hit the ball, before this moment I had always turned away as I swung the bat – I was afraid of the ball.  But when I watched the bat hit the ball, it all kind of made sense.  You swing in to the pitch and keep your eye on the ball – eye on the ball – it’s real, it works.  I got one more hit that season and then I was officially done with Little League and baseball.

Before I moved to DC with my now wife, I would come to visit and we would go to Nationals games.  The only thing I knew about baseball was the Atlanta Braves.  So I wanted to see the Braves.  Somehow Chipper Jones was still on the team during this time, quite the accomplishment for such a great player.  It’s rare these days that teams are able to keep a player for so long, with salary caps and needing to get younger to compete.  Chipper of course lost a step or two, 2012 was his last season in the MLB.  I owned a Chipper Jones jersey, I wore it to games…  2012 was also the year I moved to DC.  Chipper was going out, and everything I knew about the Braves and about baseball – was gone.

But I learned that I liked baseball, I guess as much as any man LIKES baseball.  So I kept going to games, I finally lived in a city that had professional sports teams so I adopted the Washington Nationals as my team.  I would still try and see games with the Braves were in town, but it wasn’t as important.  There was nothing tying me to the Atlanta Braves, was I a sell out, a fair weather fan?  I don’t think so – I only liked the Braves because my dad did and towards the end I only liked Chipper Jones because he was the only player from that time.  My dad kind of looks like Chipper Jones too, or maybe I just want him to look like him.  I couldn’t tell you.

Last week I was diagnosed with MS.  I woke up the week before with pain in my right eye that turned into blurriness that turned into an MRI that turned into a diagnosis of MS.

I called my mom, I called my sister… they called my dad.  My dad was adopted as a baby and knows nothing of his birth families’ health history.  My mom wanted to know if it was his fault that I had MS.  “It runs in families, we don’t have it, you don’t have MS”

My dad called and said he was going to come and visit me after hearing the news.  He told me he would let me know when he had a concrete plan for when he would come.  The next time I heard from him was him asking for directions to my apartment because he was down the street.

My mom was already in town, she wanted to be with me during this time as well.

It was a cozy little family picture, my wife, our two dogs, my mom and my dad all in my tiny DC studio apartment.  The air mattress fit snugly, touching both the tv stand (dresser) and the couch.

We watched Ocean’s Eleven… I’d never seen it before.  It was ok. We tried to find other things to watch on Netflix, but couldn’t find something we all agreed on.  Finally we decided to just turn on cable and see what was on.

The Braves were in town, the game was on MASN… MASN plays almost all the Nationals’ games.  I live in a city where a local team is literally always on TV.  A team with great starting pitchers… Scherzer, Strasburg, Gonzalez.  A batting order full of young studs… including Bryce Harper, who might just be the best player in the league and definitely is 8 years younger than I am.

Am I a Nationals mega fan?  Not at all.

I own a Nationals’ hat, I don’t really wear it.

I still go to games with my wife, friends, and family.

I haven’t thrown a baseball in a decade.

“Let’s go Braves!” my dad said.