No Room For Two Sick People In This Inn |patient caregiver relationship

woman looking away  with hand up

by: David Castillo Dominici

If you’ve ever been to a church service, especially around the holidays, guaranteed you’ve heard about the dismissive inn keeper that turned a pregnant Mary and Joseph away as they searched for shelter in the middle of the night.

Stay with me….

Two weeks ago my fiancé, AKA Babe, came down with an illness. Nothing serious, just one of those yucky-sorta-illnesses that turn your lips pale. He started his descent Thursday and by Saturday he was a mess. We were invited to a family function, which we had to miss; therefore, no one was around.

I found myself alone with this helpless, sickly soul. You would think my loving instincts would have kicked into gear, and I would have rushed to his aid.

I hate to disappoint, but I morphed into Drizella Tremanine (One of the stepsisters from Cinderella)

I got silent, lips pursed and pouty. I was PISSED! Every response he made was disregarded by my sharp, rattlesnake responses.

What the heck was happening to me?

Why was I acting this way?

In the moment, I knew I was wrong, but I couldn’t shake off the piss-poor attitude!

Has something similar happened to you?

If wedding vows were run on a trial basis, I failed… “in sickness and in health”!

How could I be SUCH a JERK, to a man that has stood by me through my worst, and is still standing by me through a medical condition that appears to be incurable.

SO CRAZY. I got the chance to redeem myself when this illness reared it’s head this past weekend. I was better, but my performance was still disappointing.

We can’t grow unless we reexamine the demise…

  1. Babe got sick.
  2. I turned into a beast.
  3. I had a moment of clarity and walked to the local store to retrieve chicken soup, sprite, and ginger ale.
  4. Babe was thankful.
  5. I was pumped I was able to walk to the store to retrieve the items he needed.
  6. Babe wasn’t getting any better.
  7. I morphed back into Drizella.

If we were preparing to cross-examine the accused, we would find testimony 5-7 interesting.

I got pumped because I was able to walk to the store, (I don’t drive because of my condition) and retrieve the items babe needed. When babe didn’t get better, I got pissed.

Yoda to my defense…

Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.

I got scared! I often feel defenseless because of this chronic illness, and babe is ALWAYS there to guard and protect. His illness left me venerable, and that venerability turned into fear which morphed into anger.

His illness shed light on my own insecurities and inabilities to be a proper caregiver. I wouldn’t have been able to rush him to urgent care. I was only able to walk to the local mini-mart to retrieve comforting items, which did not include a pharmacy.

What if my condition prevented me from walking that day? FEAR turned into ANGER, which was misguided and placed onto him!

I’m not sure why that inn keeper turned Mary and Joseph away, but I have to make sure I don’t follow suit and slam doors on my blessings because I’m vulnerable and scared.

Maybe it’s time to put some energies into planning for emergency preparedness in our home?

Much love,
Marissa

PS:  Raise your hand if you are a work in progress!

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

4 lipsticks laying on their side

“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 | Family and Chronic Illness

Crying emotion

“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

Let Me Tell You About The Man I Love

Heart made from sunflower seeds

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

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?

Architect Woman With Plan

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

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!

wet road

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

Hidden Disability and Voting Options

Is a hidden disability or chronic illness creating a voting barrier for you this election?

It’s 4 years later, and in 3 DAYS we will have the opportunity to vote in the United States 2012 presidential election.

US Presidential 2012 Election

image: freedigitalphotos.net

According to the Rutgers school of management and labor relations website fact sheet.

In 2008 131.1 million people voted, and of that population, 14.7 million people had disabilities.

The voter turnout rate of people with disabilities was 7 percentage points lower than that of people without disabilities.

It doesn’t appear that people with hidden disabilities or chronic illness were counted in those statistics.

Living with a hidden disability I am concerned at the possibility that people with hidden disabilities are not included in these stats.

Allow me to share my 2008 election story…

It was an awkward experience.

I headed to the polls in the evening when the visibility was terrible (bad idea!).

I waited in the lengthy line, and when my turn was up I was standing at the voting booth feeling yucky!

I looked over at the disability and senior section and saw accessible tables.

I walked over to one of the election poll reps and asked if I could use one of the accessible tables. She said something along the lines….

“This is for seniors and the disabled.”

I quickly froze and said, “I have a hidden disability”.

She paused. I blurted out,” I have a balance disorder”.

She looked puzzled, and said “OK,” and let me sit and vote.

I DON’T BELIEVE she was being malicious or obstructive. She was protecting those accessible tables for the disabled and seniors.

People find it to be difficult believing I have a disability. There are no visible indicators. (At the time, I was not wearing prism glasses or using a walking stick.)

The simplicity of waiting in long lines and voting can pose difficulty for someone with a vestibular disorder.

People with vestibular disorders are dealing with vertigo, dizziness, imbalance, spatial disorientation, vision disturbances and a myriad of other symptoms.

I didn’t want to deal with the awkward experience again this election year, so I made sure to vote by mail.

My Vote By Mail Pamphlet

However, I started thinking of ALL THE FOLKS that are reluctant or will not attempt to vote because of chronic illness or hidden disabilities.

I reached out to a few sources and received a response from the L.A. County Registrar-Recorder/County Clerks office.

I want to THANK THEM for their willingness to answer my questions.

Hope you find this information helpful…

If you have a hidden disability, what is the best way to communicate to the polling place that you need to use an accessible table?

We understand that disclosing a disability is a personal decision and some people may not feel comfortable making others aware of it.  However, certain level of disclosure is necessary to receive a reasonable accommodation especially if the disability cannot be directly inferred from observation.

When and if voters choose to inform the poll worker that they have a disability, they should do it in a way that is comfortable for them. Some people may feel comfortable with talking openly to the poll worker to request special accommodations and explaining that they have a hidden disability.  Voters do not need to be specific on the type of disability they have but they should be clear and specific on the type of accommodation they need. On the other hand, some people may not feel comfortable disclosing in a public setting that they need a special accommodation due to a disability. In such case, voters can hand out a brief written message to the poll worker where they explain that they have a hidden disability and request that they are provided with special accommodations (e.g. using a wheelchair accessible voting booth, a magnifier, the audio ballot booth, etc.).

 

Is it required that there be an accessible table available to seniors and the disabled regardless of state and county?

We provide accessible voting booths and an audio ballot booth, as well as a number of assistive devices to serve voters with a range of and varying degrees of disabilities. We also have curbside voting.  Poll workers will do their best to accommodate voters’ needs when they identify that a special accommodation is needed or as soon as the request is made to them if the disability is not visible.

We try to provide a private and independent voter experience for all voters.  We do not provide tables…we provide accessible booths.  Tables do not provide a private voting experience for voters.  For these voters we have curbside voting.

* I was given an opportunity to sit and vote in 2008, but, based on this response this may not be the “standard” option. I believe I may have been using the wheelchair accessible booth and was given a chair to sit in.

Not everyone with a disability is issued a disability parking sticker. Will the hidden disability voters still be allowed to pull up to the front for curb side voting without a disability parking sticker?

Any voter who is unable to enter the polling place can request to vote curb side.  You are not required to have a disability license plate.

 

Can you explain how curb side voting works?

When the voters arrive to their designated precinct, they may inform election officials of their need to use curbside voting by pressing the button on the curbside call box. An election official (i.e. poll worker or inspector) will respond to the request for assistance by carrying a ballot outside the polling place and providing it to the voter. The voter is then able to make his or her choices in the comfort of his or her vehicle.

Is there a national phone number that the individual can call if they run into disability discrimination and they are not permitted to sit and vote because they “don’t look” disabled?

I was not provided a national number, however,  I was given local numbers.

I live in California and here are the numbers for Disability Rights California

North California: 1-888-569-7955

Southern California: 1-888-733-7565

Before or after election day call: 1-800-776-5746

If you DO NOT LIVE in California, and need to report a problem call 1-866-OUR-VOTE

You can find more information via the  866ourvote website.

Final Thoughts:

Find out how your state handles pre-election day voting. In the future I would suggest voting early.

If, you HAVE NOT taken advantage of pre-election day voting options don’t be discouraged.  Take advantage of curb side voting.

Helpful links provided by the L.A. County Registrar-Recorder/County Clerks office:

What is the law

Assisted registration

Is Your Poll Accessible? On-line Feedback Form

Accessible Voting Options

Whom to Contact

Election Guide for Voters with Specific Needs

Additional links I suggest you check out (national information)

Election Protection: You Have The Right To Vote

Register To Vote And Request Your Ballot Using The Form Your State Prefers

Rutgers- Disability and Voter Turn Out Facts

Disability Vote Project (I was unable to get a response, but the information on the site is solid)

National Disability Rights Network

Much love,
Marissa

PS: Voting should be an equal playing field, and regardless of ability we deserve the opportunity to exercise our right to vote!

You Get News That An Old Friend From High School Just Had a Stroke

Emotions are racing and you move from shock, sadness, to concern.

Your NOT SURE EXACTLY what happens to the body when someone has a stroke, but you know enough to associate the word with a terrible medical event.

Majority of us would respond exactly the way I just detailed when hearing about MOST major medical events.

The word recovery ALMOST NEVER enters the mind. Fixation on the event itself set’s precedence, and we can’t fathom what a person going through a serious medical event endures after the onset.

A few major medical events and their possible recovery and treatment paths:

  • Cancer leading to chemotherapy treatment.
  • Stroke requiring open brain surgery leading to post-stroke rehabilitation.
  • Arthritis leading to infusion treatments.
  • Rare form of liver disease leading to transplant wait list. After transplant comes months of immunosuppressive medications to prevent the body from rejecting the new liver.
  • Vestibular(balance) disorder leading to balance retraining through vestibular rehabilitation.

These major medical events require treatment protocols in attempt to heal the body.

These recovery modalities are often times painful, emotionally devastating, scary, physically taxing, ongoing and are accompanied with a slew of other unpleasantries.

This months 12-12-12 project, learning about brain AVM, has had a lasting impact on me.

Project member Sarah had TWO STROKES before the age of 35, YET that’s not where her story ends. Sarah had to endure several months of rehabilitation to gain her independence.  She is left with daily physical reminders of the stroke.

SO when you hear that someone is going through a major medical event, find a way to support them beyond your initial shock. They are working to hold onto who they used to be while accepting the reality of a life that has been drastically altered.

Sarah shared with me an awesome blog called Hope Heals. The blog chronicles the life of a woman names Katherine Wolf and her message of hope after suffering from an arteriovenous malformation.

This video is the PERFECT example of how a major medical event can turn a person’s world upside down.

Much love,
Marissa

 

12-12-12 The Lesson: Positive Change

Change scares MOST of us. WHY?

BECAUSE THERE IS A POSSIBILITY WE MAY FEEL…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

When I got sick, I subscribed to two schools of thought…

1.) I have no control over this illness. It has me. I CAN’T change my situation.
2.) My choices are limited, BUT there are plenty of areas of my life I STILL HAVE control over (what I put in my mouth, my at·ti·tude, my personal values and beliefs). I started focusing on what I could control! I realize access to choices means there is a chance I CAN change my situation.

 A POWERFUL SHIFT happened when I moved from I CAN’T to I CAN!

 When I was in the I CAN’T camp, I felt…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

Now enrolled in the I CAN camp, I feel…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

WHAT?

How can this be? I know what your thinking. “Marissa, what are you talking about? You are still in the same place! Nothing has changed for you.”

Does that mean I am not broke, not sick, or not realistic about my situation? NO.

Let’s face it, I am bordering “JUST ANOTHER STATISTIC “ status. There is a HUGE chance I may not be able to reinvent myself and support myself financially or enjoy a career I am passionate about because of these new limitations.

THE DIFFERENCE IS…

I BELIEVE that I have enough variables in my life that I can control where CHANGE may positively alter my current predicament.

This month’s 12-12-12 lesson has reaffirmed that belief.

Peachy shared with us a lesson that is both critical and relevant.

“Be the change that you wish to see.”

I’m trying to be the change that I wish to see. I wish there was a change in regards to arthritis. I wish there was a change and a cure for arthritis. I wish there was more people who actually understood about this disease and where people didn’t feel isolated and alone and felt freely to talk about it and not feel like people are going to discriminate against them, and make them feel alone. I’m trying to be the positive change in which I hope people who have arthritis can see.

Peachy listed VERY SPECIFIC areas in her life where she doesn’t have much control over. BUT she is grabbing onto the variables in her life that she has control over and that she BELIEVES she can actively change.

She is positively changing the world around her by being the best version of herself.

Here is a link to this month’s 12-12-12 podcast interview with Peachy.

Peachy! You are a blessing and THANK YOU for reaffirming the power of positive change!

Much love,
Marissa

P.S. Bust out one of your devices or go old school on me and use paper and pencil. Jot down one area of your life you have control over mentally or physically.

Example: Are you judgmental? Do you see someone walking down the street and you are quick to judge them? “Oh my, what was she thinking wearing that? Oh no she didn’t!”

Well guess what? That is an area of your life you have control over! Whatever you decide, let that be your start to positive growth. You will soon find there are many areas where positive change is possible.  You will start to experience personal growth AND THAT will instill a belief that positive change is possible for you.  It might hurt. You will most likely resist. You may fail. And that is when you know you are on your way to producing positive change. You got this!