Ignore That Voice In Your Head and Put On Some Lipstick!

May 19, 2013 by Marissa

“Lipstick” by Ohmega1982

Time travel with me…

When’s the last time you felt good about yourself?

You know that feeling when you catch a glimpse of yourself in the mirror, and you say, “DAMN, I look good!”

What if I told you feeling good about yourself should be your NUMBER ONE priority.

When you get sick, or life throws you a curve ball, you spend days, months, years flailing around in a cesspool of dark and demeaning thoughts.

You refuse to engage in positive banter because you’re pissed.

“Life isn’t fair. Why me? Look at how happy they are.”

Are you justified? Yes.

Does your life suck? Probably.

I’m not a psychologist. I’m a gal living with chronic illness, navigating unchartered waters, SO take this advice for what it’s worth.

I know when I stumble upon JUST ONE positive distraction from my chronically- turbulent-vertigo- filled life, I feel if even for a split second, better about my overall situation. That manifests into believing today is worth living, which translates into a life worth living.

Walking around in sweatpants, hoodies, and house slippers wasn’t cutting it. I did that for a few years after I got sick. (Heck, you will still catch me rocking the freshman dorm college look once or twice a week.)

I looked homely and I felt like S%&)!

I still feel like S%&, but most days I pull it together.

Let’s get it straight. I’m not a designer chick with fancy clothes. My latest “designer” blouse came off the rack at JCPenny. But hey, that’s where I’m at. (Start with, where you are and what you have.) A pair of Levi’s and a nice fitting t-shirt equals “looking nice” in my opinion.

It was an AHA-Oprah-moment for me when I realized feeling good about myself meant spending less time with my internal Gargamel.

Here’s the plan I strive to follow…

* Take a shower

* Dry, comb, AND style my hair

* Put on some foundation, blush, and a lipstick (lip gloss most days).

* Put on ANYTHING other than a hoodie and sweat pants.

* Stand and look at myself in a full length mirror. (See the transformation, be the transformation.)

Here’s the deal… 3 people see me on a daily basis, so what’s the point?

THE POINT IS… DO WHATEVER it takes to feel better about yourself no matter who or how many people are looking. It’s about YOU. No one can affirm your self-worth… that comes from YOU!

My plan isn’t earth shattering or book worthy. It’s a daily routine “healthy” folks take for granted. I constantly strive to follow this plan because I believe feeling good about myself is important. I have bought into the idea that regardless of how crappy I feel on a daily basis I still deserve to take pride in and feel good about myself on some level.

The victory is yours! Positive distractions are around every corner. For me, it’s pulling myself together. What will it be for you?

Kick that Gargamel in the A$% and rock (wear) a nice shade of lipstick! (Or whatever floats your boat!)

Much love,
Marissa

Crying In The Middle Of JCPenney

April 19, 2013 by Marissa

“Crying Emotiguy” by farconville

You read that right. I don’t want to give you the impression that I was uncontrollably sobbing, but I did have to take my glasses off and wipe tears.

I was accompanied by my future mother-in-law and we were wandering between men’s big & tall and the guys department.

Combing over the sale rack I was overcome with a spirit of thankfulness. I glanced at my future mother-in-law and blurted out…

“Thank you for everything you have done for me.”

Next thing you know the tears were flowing. We quickly embraced and began to walk it out!

Let me tell you, I wasn’t expecting that!

I have had a few days to reflect on why those emotions surfaced. I have come to the following conclusions.

Unfortunelty, when you are living with an invisible chronic illness you often find yourself trying to convince others that you are suffering from a real condition that they can’t physically see.

I try to be as authentic with people as I can, but certain individuals don’t completely embrace my story as believable.

8 years into this condition I am learning to be OK with the idea that some people can’t be convinced.

I am less tolerant when it comes to members of the medical community. Certain doctors and “specialist” I have encountered have taken the position that credibility comes in the form of blood work, CT’s and MRI’s. If everything comes out “normal” your credibility is shot.

Then comes the patronizing phrasing…

“Are you more stressed than usual?”
“Is everything OK at home?”
“Have you considered seeing someone in mental health?”

You know something is TERRIBLY wrong, but the person you believed had the power to fix it has thrown in the towel. They have closed off the idea of possibility and you are disregarded.

Thank GOD not all medical professionals are cut from the same cloth.

Which takes me back to why I got emotional in the middle of JCPenney.

I really should have said to her …

“Thank you for believing me! Thank you for not dismissing me or second guessing me. Thank you for making adjustments to my situation.”

I can count on seeing three people on a daily basis. THREE! One of those individuals is my future mother-in-law.

She believes me! She doesn’t question me. She knows who I was before and who I am now. She didn’t discard me or question me, and that is why I cried in the middle of JCPenney.

If you are being dismissed or ignored, hang in. There will be a person that comes into your circle that doesn’t need to be convinced. They will embrace, believe, and accept. Just promise yourself that when that person presents himself or herself you won’t take them for granted!

Much love,
Marissa

Chronic Dizziness Podcast …Coming Soon

April 5, 2013 by Marissa

EXCITED to be joining forces with my friend Jane to bring to you a podcast about living with chronic dizziness.

We are going to get down and dirty in the trenches navigating through this murky world we call chronic dizziness.

If you have ANY topics you would like covered, don’t hesitate to shout them out over on our Facebook page.

NOTHING is off limits!

We appreciate and welcome your well wishes and support!

Much love,
The Spin Sisters!
(Marissa and Jane)

Connect with us:
The Spin Sisters Facebook Page
The Spin Sisters Twitter Page

Positive Messages: What Are You Projecting Out Into The World!

March 20, 2013 by Marissa

I am blessed to have an outstanding Gram(Grandmother)!

My parents worked long and hard hours, which meant I would spend a considerable amount of time with my Gram.

A few weeks ago, I was alone in her house awaiting her return from a doctors appointment. I found myself wandering the house, in awe of all the positive messages that have been staring back at me since I was a kid.

Every uplifting and encouraging message I have received from Gram is not because she reads out loud inspirational scripture, and shares enormous loads of wisdom.

It’s much deeper than that!

I realize what makes a person a positive influence is not the positive messages they pin up for all to see, or the positive sayings that roll off their tongue. It’s how they internalize those lessons, sayings, and messages. Gram lives and acts in accordance to what she believes AND THAT makes her the most positive influence in my life!

Thought:

Are we living a life in accordance to what we are projecting to the world?

Much love,
Marissa

PS: Thanks Gram for living your truth so I can be inspired to find and live mine!

Sick And Tired Of Consuming Your Way Through Life? I Understand

March 4, 2013 by Marissa

By: Stuart Miles

Received an email that got me thinking!

The people that are successful in any aspect of their life (financially secure, weight loss, gaining new skills, breaking addictions, etc.) … DO.

The people that dream of being successful …CONSUME.

I have been consuming for years!

* Let me read ONE MORE self-help book.

* If I follow THIS PARTICULAR BLOG, I’m sure to uncover the secret of success.

* She’s healthy, I’m not, SO I can’t learn a new skill.

* I wasn’t in those fancy AP classes in high school, SO I’m not smart.

* I wasn’t born with “talent”, SO that’s not possible.

* I’ve made mistakes in my past, SO I’m being punished with poor health.

The list goes on and on! Why put this out there? Because, I believe in accountability.

Throughout the years, successful individuals have waltzed in and out of my life. Success I don’t define as solely materialistic. Individuals completing marathons, running a successful business, finding a soul mate, losing 20 lbs.

Enter, Vanna.

(Awesome name change to protect her identity!)

I remember this gal playing 1/2 No Limit Holdem. She was good but wasn’t Jennifer Harman. She believed she could be a successful poker player. The belief wouldn’t have been enough. She worked daily to achieve that goal. Myself on the other had, could have been good, maybe great, but I had to read one more poker blog, one more book. I didn’t take action. I didn’t apply! I second guessed myself. I compared myself to others.

On the other hand….

VANNA may have had doubt, BUT that didn’t keep her from putting in daily work. Vanna consumed poker content, but she didn’t let that consumption of content keep her from application. She worked at it, and I NEVER want to play a hand of poker with that gal! She is now a professional poker player.

SO! I publicly state that mediocrity is a choice.

Living with a chronic illness I have EVERY RIGHT to continue to consume my way through life. I don’t have to take drastic and life changing action. Some of my doctors support mediocre and small actions. (“If you build up enough stamina you could work at a bookstore two hours a day.”) I can be praised for getting up daily and pressing on because that is the acceptable expectation based on my health circumstance.

Guess what?

That sucks! To be in the same place expecting different results in 30 days is ludicrous! I would be delusional if I didn’t believe life changing action would be difficult because of my medical situation. However, it’s not impossible to set and achieve meaningful goals while having limitations.

SUCK IT UP Marissa!

*It’s time to TAKE DAILY STEPS maintaining motivation so in 30, 60, 90 days dream’s, become effective goals!

PS: Accountability is essential to making lasting change so I will keep you posted!

Let Me Tell You About The Man I Love

February 14, 2013 by Marissa

Photo by: justingun

The blessing bestowed upon me from above

A friendship that blossomed into affection
A relationship built from a strong connection

A turbulent roller coaster moving at high speed
Life altering circumstances that planted a seed

It would have been acceptable to walk away
You gave me a ring and promised you would stay

Through your eyes I see that I have changed
Yet, you never alienated me leaving me estranged

It’s here I make this public decree
We are not always going to agree

BUT I am going to love you and continue to grow
I will fight for us and not let go

So on this Valentine’s day, please allow me to say,
I will greet you with love at the end of each work day

I will always have your back
When the evil of this world want’s to attack

I will work harder to fight a harsh tone
Remembering not to cast the first stone

I won’t be perfect, and I will stumble
Hey, even Dan Marino was allowed to fumble!

All jokes aside, I will remain by your side
Looking forward to one day being your bride

I LOVE you babe. Happy Valentine’s Day!

MUCH love,
Marissa AKA Babe

PS: Hugs to those that have stuck by and uplifted their “Babe’s” regardless of chronic illness.

Video doesn’t start until 15 seconds in…

Joy Can Survive And Revive

February 13, 2013 by Marissa

Lightbulb shinning bright surrounded by burnt out lightbulbs.

Photo by: Master

Didn’t realize how emotionally depleted I was.

Babe picked me up last night from Gram’s (Grandmother), and as we were driving away he asked….

Did you have a good time?

I started crying!

I feel broken by this disability. It becomes a dark cloud that desires to envelop the soul.

Spending 2 days with Gram, nieces, and my sisters, I am reminded that darkness and light coexist.

If this beast of an illness stays with me the rest of my life, I have a powerful defense… JOY!

Throughout my life Gram has unintentionally (possibly intentionally) groomed me for this very moment in my life. She has reminded me that sources of POSITIVE joy can be pulled from many life experiences.

*My sister taking me to the hair salon after-hours so I can get my hair cut and colored!

*My niece laughing out loud in 5 minute increments because she is happy!

*My family holding hands in a circle several years after my grandfather’s passing thanking God for the beautiful memories we are left behind.

Guess what? This vestibular condition was present during every one of those moments! Yet, JOY was still present.

Balling up and internalizing POSITIVE moments of joy are going to be critical to combating this chronic illness longterm.

I also realized…

“I’m not who I was before!”

I am NEVER going to be who I was before.

Does that mean I am not entitled to joy?

Does that mean joy will not exist because I am living with a chronic illness?

Does that mean I can’t spread joy because I grieve?

NO!

Joy is a FEELING!
Joy is STRENGTH!
Joy can TRANSCEND!

Joy can SURVIVE and REVIVE even in the midst of deep sorrow!

This “brand new kinda me” has been years in the making.

I was flipping through the channels at Gram’s and came across this song being performed by Alicia Keys!

Listen to the words.

“Brand New Me”…

Much love,
Marissa

PS: “It took a long long time to get here.” Be patient with yourself! Growth and change are critical to becoming the brand new kinda you!

Who’s Hiding The Blueprint On How To Live Life After Chronic Illness Sets In?

January 30, 2013 by Marissa

Photo by: adamr

LIVE is the key word. Who is in favor of finding a blueprint on how to exist? NOT ME. I’m not shy expressing my desire to find a blueprint on HOW TO LIVE!

If you are living with a chronic illness, and we have interacted on some level, I may have bombarded you with a loaded question:

How do I live a life like this? What’s the blueprint?

I have heard the following responses (forgive me, I’m paraphrasing) …

“There is no blueprint!”

“Just live your life and it will work out.”

“I wish I had the answer.”

According to the CDC’s chronic disease and health promotion webpage, 133 million Americans have at least one chronic illness.

I will add myself to the list. Let’s go with 134 million! I have to error on the side of ignorance because I don’t know how this data is collected.

Side note: If you can help me understand how “Disease Surveillance Systems” work, I’m all ears!

Surely someone out of 134 million people has found a way to FLOURISH and SUCCEED after moving past grief and acceptance.

I have been in this chronic illness game for 8 years. It has taken me time to move through Elisabeth Kübler-Ross’ Five Stages Of Grief.

Another side note: Last year, someone I didn’t know, tongue lashed me with this beautiful phrase…” You’ve had this 7 years, and you haven’t figured it out?”

I thought I was “balancing” between depression and acceptance with more weight being placed on acceptance.

However, I had a bit of a setback. I recently had a doctors visit that exposed a wound. He expressed I am experiencing an “appropriate” emotional response to functional limitations. He proceeded to tell me that I am wearing a mask which projects everything is OK! When that mask is penetrated, it’s exposing my deep sadness. When I’m asked about how this condition affects those around me, I break down and shed ugly tears! When I was asked to talk about my limitations, the flood gates of emotions poured out! This doesn’t actually sound like acceptance, does it?

I’ve had this chronic illness for 8 years and data would show that I am chasing symptoms at this point. The doctor at this appointment eluded that chronic vestibular symptoms may be my life long fate!

I got home and paced around for a bit and then something happened! I started recapping the day, and I got ANGRY! I started air boxing and yelling my head off! I will share with you the clean version…

“HOW THE HELL AM I SUPPOSED TO LIVE LIKE THIS FOREVER!”
“Do you know what it feels like to live like this?”
“Do you know what it feels like to have people question something they can’t see?”
“Do you realize how close I came to ending this?”
“I’m going to punch this wall!”

Poor bug! Thank GOD for him. I went to punch my fist through the wall, and he grabbed me! He snapped me out of my rage with a stern, yet concerned tone: “Your going to brake your hand!”

For some perspective, I’m not an angry gal! I have a pleasant disposition. I approach everyone I meet with a general excitement. So this angry outburst is not usual for me!

A few days after this incident I started to gain some clarity! I recalled what the doctor said in our first meeting. My joy and vibrancy for life is still a real part of who I am, and chronic illness did not remove those qualities from within me. What’s hidden above that layer is deep pain and loss. Right above that layer is what I project to the world. With time, I began to see this as genuine good news. I have a desire to grow and transform regardless of deep pain and loss.

This is a situation where it’s OK to fake it until you make it! Deep down on some level is your true self. Deep down is your happiness, love, passion, and it’s “normal” that your pain and suffering are suppressing those beautiful qualities! At first I was concerned that my current display of excitement and positivity was a fake projection because on some level the sorrow and grief are still present. The doctor confirmed that is not the case, which was an enormous relief.

It’s OK to claim who you want to become despite the sorrow and grief of your chronic illness. This may allow you to spend time in the present moment reclaiming the beautiful parts of who you were while cultivating who you will become.

So, who’s hiding the blueprint? I will speak for myself… ME!

I am looking forward to working with a chronic illness and disability therapist in hopes of rebuilding my “psychological system” so I can redraw my life blueprint!

Much love,
Marissa

P.S. Hang in! It’s one foot in front of the other. We got this.

References:
CDC- Chronic Disease Prevention and Health Promotion
The 5 Stages of grief and loss

Disabling Life Autopilot

January 9, 2013 by Marissa

I have found this post difficult to write. Not because I don’t have incredible things to say about 2012, quite the contrary. It’s that I don’t believe I have fully digested the lessons of 2012.

I didn’t realize I had been gathering fuel for this project for 6 year, and all I needed was ignition. That spark came Dec 13, 2011. I received an email from Susan Mees from WEGO health.

Dear Marissa,

I’m writing to let you know that you have been nominated for one of our 2011Health Activist Awards by someone in your community. The first-ever Health Activist Awards will recognize Health Activists for the great things they’ve accomplished this year. Your nomination has put you in the running to win an Award. Congratulations!

An award? Wow. At that point, I had seen the blog as a personal diary. No one in my life had willingly sat me down and wanted to hear my version of how my health derailed my life. Sure, I saw a few therapist, but that was me reaching out for help. No one had reached out in the way I had needed them too. I was on autopilot, driving on the wrong side of the highway, praying for a head-on collision and no one knew it!

photo: freedigitalphotos.net

The blog became my mentor. I wrote, it didn’t judge, and I wrote some more. I didn’t have a direction for the blog, or want to turn the blog into an affiliate money making machine! LOL. I needed this blog. I envisioned one spectator out there that was interested in hearing about my story. I wrote to that one witness.

I was fully engrossed with MYSELF!

I only saw MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

I was growing and purging emotionally in 2011, but something was missing! I had no clue how to turn off the cruise control of fear. I had worked myself through the stages of grief with assistance of a therapist, but I was AFRIAD! NOW WHAT? How do I live a life with a hidden disability?

The email from WEGO health contained a link to additional awards and nominees. I began following the nomination and award process and found myself devouring each nominee and their story. I became obsessed with their journey’s and how they were living despite chronic illness.

Dec 15, 2011 blog post: Reflection, monition, idea, execution…

For a moment, I found myself lost in another person’s story and passion. After reading several nominees blogs, I had a thought. Could a shift in focus away from vestibular struggles help me through my vestibular struggles? Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition.

Dec 18, 2011, I put together a video blog.

The 12-12-12 project was birthed and I got to work.

It wasn’t about MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

It was about Their story, Their journey, Their tragedy, Their hurt, Their pain, Their grief, Their loss!

I became the person I needed that never came. I wanted to hear their stories, learn about their conditions and spread awareness! I became so invested in this project that I was often distracted by my own personal struggles living a vestibular disorder.

If I felt fatigued, I would think of Kim and her struggles living with a Budd- Chiari Syndrome, and the fatigue that engulfs her.

If I didn’t want to walk for exercise, I would think of Peachy living with a form of arthritis called Ankylosing spondylitis that requires her to exercise to maintain flexibility in her joints.

If I didn’t want to take a shower because I was down and depressed, I would think of my dear friend Blake. He would love to hop out of his wheelchair and jump into the shower, but Spinal Muscular Atrophy has taken that from him.

If I could choose a single lesson from this project to share with you, it would be this….

Actively search for and wholeheartedly listen to another persons story. You will create a synergy of emotional healing for the both of you! There is power in numbers.

Thank you to EACH project member for opening yourselves up to share your story.

January: Blake Watson
Condition: Spinal Muscular Atrophy

February: Kim M.
Condition: Budd-Chiari Syndrome

March: Amy Gurowitz
Condition: MS

April: Rhiann Johns ( Thank you to Mrs. Johns!:)
Condition: Long-standing brain stem lesion and spastic paraparesis

May: Sara Gorman
Condition: Lupus

June: Dale Lehn
Condition: Chronic Pain

July: Peachy
Condition: Ankylosing spondylitis

August: Sarah Levis
Condition: Arteriovenous malformations (AVM)

September: Sarah Mills
Condition: Severe multiple allergies, covering asthma, hay fever, eczema, food allergies and Multiple Chemical Sensitivity (MCS)

October and November: Andi and Jett Durkin
Condition: Down Syndrome

December: Pam Sloate
Condition: Dystonia

From the bottom of my heart, I love you all and THANK YOU for disabling my life autopilot, putting me back on the right side of the road, and keeping me from a head on collision.

Much love,
Marissa

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