Something to SEA: Learning about Lupus

Logo_High_10mayToday is World Lupus Day. When I began SoulSEAker nearly a year ago, I vowed to focus only one blog entry a year, on May 10, about Lupus. While I have mentioned it at times, I do not want SoulSEAker to be a depressing place or an outlet to vent about the daily difficulties and issues I face caused by Lupus and Fibromyalgia. No sir.

This entry is, in no part, a call for sympathy or attention. My goal is to help you understand what Lupus is, to be honest and matter-of-fact about how it affects me, and what you can do to help spread awareness.

The first question a lot of people ask me is, “What is Lupus?” Well, the textbook definition of Lupus is a chronic and disabling autoimmune disease that causes, among other things, inflammation throughout the body.

The second question that follows is, “What the heck does that mean?” Let’s see if this can help you understand what Lupus is.  The body’s immune system normally produces proteins called antibodies that protect the body from foreign invaders, such as viruses and bacteria. Autoimmune means the immune system cannot tell the difference between invaders and the body’s own cells (“auto” means “self”) and creates autoantibodies that attack and damage healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Symptoms vary from person to person, and it is very difficult to diagnose since symptoms mirror so many other diseases and tests can be unreliable. In fact, no two cases of Lupus are alike. It can be hereditary: my mother also has Lupus and we both have completely different symptoms. It can strike anyone male or female, of all races and ethnic backgrounds.  I was officially diagnosed when I was 37 years old (and my blood test didn’t turn “positive” for Lupus until I was 40), but looking back, I realize I actually had symptoms appear as early as in my late teenage years.

The most prevalent symptoms that I have every day are:

  • Extreme fatigue. I am mentally drained by 6:00 pm at the latest (sometimes earlier) and cannot complete any sort of mental tasks once I hit my “shutdown time:” I can’t write, read, grade, etc. Usually, about half an hour after my “shutdown time,” my eyelids become very heavy and I need to go to bed, which can be as early as 6:30 pm. It is very frustrating when it is a nice, warm, spring day and I’d much rather be enjoying the outdoors instead of shutting down from complete exhaustion and falling asleep before sunset. Signs and Symptoms of Lupus
  • Low Energy. There are days when my energy is completely used up before 7 am. Those days are rough. Even something as simple as going from classroom to classroom or making my lunch will render me winded, and I will need to sit and rest to recharge if possible.
  • Muscle and Joint Pain. Specifically, my legs and hips. Most of the time the muscle pain in my legs is what I would describe as “electric current pain.” If you can try to pretend that there’s a current of pain radiating like electricity up and down your leg muscles, that’s what I experience on a daily basis. My rheumatologist thinks that both Lupus and Fibromyalgia are working hand-in-hand with the leg pain. The joints that usually throb every day are my knees (left worse than right) and hips (right worse than left). Nothing helps alleviate my muscle or joint pain; I don’t even bother taking pain medication like Advil or Aleve anymore. I also experience pacing & mobility issues related to the pain, and I often walk very slow, like a turtle or a sloth (glad that both turtles and sloths are cute!).
  • Headaches. Every day I have a headache. Some days Excedrin Migraine helps, some days not. They are always different and vary in intensity from dull to sharp: all over the top of my head, throbbing across my forehead, a sharp pain like an ice pick going through the left side of my head behind my eye, etc. You get the picture. Like Mama Gump said, “you just don’t know what you’re gonna get” on any given day.
  • Face Rash. I have the typical “butterfly” rash, but most of the time, people don’t realize it’s a Lupus rash. On me, it looks like sunburn. Some days it burns a bit and it can be hot.
  • Other random symptoms I have a few times a week include noise sensitivity, fevers, concentration/comprehension issues, and light sensitivity. Stress exasperates my symptoms.

The good news is that Lupus is not contagious. There’s no way you can catch it from me if we spend time together. The bad news is that, at this time, there is no cure for Lupus. I am on a number of medications, including steroids and chemotherapy drugs, which have made me gain weight. Ironically enough, I had West Nile in 2012, and it was the steroids I take for Lupus that saved my life and prevented my fever from going higher than it’s peak of 106.8. When I look at the big picture, I’d rather have a little more weight on me than not be here at all. I manage the best I can every day. My best days are ones with as little stress as possible and time to rest versus go-go-go activity.

The Burden of LupusPlease do not misunderstand my explanations for complaints. I treasure each good day I have, and no matter how bad a day is, I know it could be a LOT worse. I count my blessings and am grateful, no matter what.

There are an estimated 1.5 million Americans and 5 million people worldwide with Lupus. Despite its prevalence, research has been relatively unfunded. Celebrities and notable people who reportedly have Lupus include Selena Gomez, Seal, Nick Cannon, Toni Braxton, Flannery O’Connor, Paula Abdul, Ray Walston (Mr. Hand for fellow Fast Times at Ridgemont High fans), and Lady Gaga.

What can you do to help?

Know Lupus SquareHow can you learn more?

Thank you for taking the time to read this very personal post. I hope you learned something new, and that you will help spread the word about Lupus awareness. If you have any questions please feel free to leave a comment or to reach out by email: soulseakernj@gmail.com.

With gratitude,

Jill

*** Information from Lupus Foundation of America and World Lupus Day

 

 

“Sea” Why My Tears Are Purple…

It’s not uncommon for me to have my phone out while teaching journalism. All students have their phone out as well, which is technically a violation of school policy, but news alerts are the quickest way to find out about breaking news. We’ve watched several breaking news stories develop over the years via our handheld devices, including the tracking of the Boston Bombing suspects, the 2011 Japan earthquake and tsunami, Pope Francis’ travels in the USA, the World Cup soccer events, and the Olympics. It’s hands-on learning in the real world for journalism students.

About 5 minutes into class on Thursday, April 21, 2016, I looked down at my phone as it lit up with an alert and audibly gasped while covering my mouth. “Oh no! Oh no!” I said as I read the unbelievable alert: BREAKING NEWS: Pop Star Prince has died, AP reports.

My students immediately checked their phones as I said, “Prince died? I can’t believe this!” as tears welled up in my eyes.  Some students knew right away that Prince was a musician. Others thought it was Prince William from the UK. Still others had no idea what Prince meant or who it could be.

I hoped that it was a hoax, but it wasn’t. The planned journalism lesson was changed to follow the story surrounding Prince, and as each alert and tweet was posted, we added to our timeline of breaking events.  Students were to determine what was fact, what was not, what might be true, what might not be true, the credibility of the source, etc.

After class ended, I sat in my chair and sighed very hard with my head in my hands, overwhelmed by sadness and disbelief. I was surprised about how upset I was, and couldn’t figure out why at first. I wasn’t a huge Prince fan. I mean, I liked his music, but I never saw him in concert. I had a few of his songs on my playlists over the years, but never made it a point to listen to the songs over and over, whether on cassette, CD, or digital.

I’m usually empathetic when a celebrity passes away, but not at this level. The only other time I actually cried over a celebrity death was when Chris Farley died.

Why, why then, was I shaken to the bone over the news that Prince wasn’t alive anymore?

Why was I unable to control my tears?

Then it hit me.

It’s because Prince was always there.

He was just there, all the time.

Looking back on Prince’s career, I was surprised that I still knew most of his hit songs word for word, even though I haven’t heard some of them in over 25 years.

I never realized that since 1978, Prince released an album almost every single year I’ve been on this earth.

His music was the background music to my life, to all of our lives, whether we were diehard fans or not.

He was there since I was a child, and was always there…through my teens, through my twenties, through my thirties, and through the first half of my forties.

Every chapter of my life has at least one Prince song playing in the background, if not more.

He was purple. He was unique. He was influential beyond description. He was talented beyond comprehension.

Prince was a musical genius.

Prince was always there.

And now he’s not.

There are so many unanswered questions…Who is his family? Why did this happen? What could have prevented it?

And you know what? I don’t want to know the answers to those questions.

To me, not knowing his private persona makes him more mysterious and interesting.

I do not want to know the result of the autopsy, because it doesn’t matter what it says.

I do not want to consider what could have been done to prevent this from happening, because it will not change the outcome.

The fact is that Prince is not here anymore.

The world will never be the same.

And I’m not the only one feeling his loss.

So many artists are performing his songs in tribute, artists like Pearl Jam, Bruce Springsteen, and the cast of The Color Purple. Tweets from music icons such as Steven Tyler and Bette Midler, and from others like Spike Lee, Oprah, and Jimmy Fallon show that these masters considered Prince THE master. Landmarks have been lit up worldwide in purple to honor Prince’s lasting legacy. The movie Purple Rain is showing nationwide in movie houses, and on television almost non-stop. MTV even interrupted their miserable programming to bring viewers hours of Prince videos, Sirius XM set up a Prince tribute station, and Saturday Night Live aired a Prince special and retrospective in place of a rerun.

With each tribute, tweet, and photograph, I realize that Prince was the one artist I took for granted. I thought he’d just always be there, singing and strumming through the background of my life…forever.

It’s been 3 days since I received that news alert, and I’m still heartbroken.

And I’d venture to say that so is the world.

Thank you, Prince, for sharing your extraordinary gifts with the world, and for being that one constant note that played through my journey here on Earth thus far. Thank you for soothing, for inspiring, and for guiding my soul.

Most of all, thank you for helping us all get through this thing called life…

“Electric word life

It means forever and that’s a mighty long time

But I’m here to tell you

There’s something else

The after world

A world of never ending happiness

You can always see the sun, day or night

So when you call up that shrink in Beverly Hills

You know the one, Dr. Everything’ll Be Alright

Instead of asking him how much of your time is left

Ask him how much of your mind, baby

‘Cause in this life

Things are much harder than in the after world

In this life

You’re on your own

And if the elevator tries to bring you down

Go crazy, punch a higher floor

If you don’t like the world you’re living in

Take a look around you

At least you got friends

You see I called my old lady

For a friendly word

She picked up the phone

Dropped it on the floor

(Ah, ah) is all I heard

Are we gonna let the elevator

Bring us down

Oh, no let’s go!

Let’s go crazy

Let’s get nuts

Let’s look for the purple banana

‘Til they put us in the truck, let’s go!

We’re all excited

But we don’t know why

Maybe it’s ’cause

We’re all gonna die

And when we do (When we do)

What’s it all for (What’s it all for)

You better live now

Before the grim reaper come knocking on your door

Tell me, are we gonna let the elevator bring us down

Oh, no let’s go!

Let’s go crazy

Let’s get nuts

Look for the purple banana

‘Til they put us in the truck, let’s go!

C’mon baby

Let’s get nuts

Yeah

Crazy

Let’s go crazy

Are we gonna let the elevator bring us down

Oh, no let’s go!

Go crazy

I said let’s go crazy (Go crazy)

Let’s go, let’s go

Go

Let’s go

Dr. Everything’ll be alright

Will make everything go wrong

Pills and thrills and daffodils will kill

Hang tough children

He’s coming

He’s coming

Coming

Take me away”