Relax, Doctors Are Human. Kinda.

I can’t speak for you, but doctors stress me out!

I prepare for medical appointments the same way I prepare for final exams.

I spend weeks researching terms and piecing together what I believe is relevant data.

Carrie and Saul standing in front of Carries color coded wall.

Photo: Kent Smith/SHOWTIME- Homeland

I print out pages of medical journals pouring over complex medical terminology I’m not qualified to comprehend. That doesn’t stop me from trying.

Armed with groundbreaking information…recent symptom checklist…list of questions… I’m prepared for battle.

It NEVER seems to go as well as planned out in my head!

Doc: ” Hello. I’m Dr. SharpAsATack. What brings you here today?

Me: “Well, this is happening. Ok, let me tell you. Did you read the latest breakthrough? Is this 5th symptom on my checklist normal? The last doctor I saw said I have Xyz. Do you believe me? ”

Total spew!

You know what I’m talking about?

It’s kinda sad. Fighting to get your life back, while given 15 minutes to plead your case in front of Dr. SharpAsATack, and the opportunity gets away because of intimidation. Craziness.

Scrubs and a lab coat get me every time.

I’ve been unable to view Dr. SharpAsATack as human, which rocks my confidence, hence spew.

There has to be a better way. Let’s get some things straight.

#1. Doctors are human!

Kinda. They are “special” humans that have a fascinating ability to understand complex data. Don’t allow that specialized knowledge to intimidate you.

#2. Less is more.

What expletive runs through my doctors mind when he/she glances at my manila folder filled with papers! Lol. I’m guessing… $HIT!

There’s nothing wrong keeping up on the latest medical findings, but be mindful not to inundate your doctor on the initial visit. Allow the relationship to cultivate. After a relationship is established, don’t be afraid to suggest an article you two can review.

Tip: While at initial visit, stay focused on presenting your medical history. If you suffer from dizziness, check out VEDAs suggested worksheets.

#3. Trust yourself.

I start to get a hot flash the second after the nurse says…” The doctor will be right with you.”

After nine years of living with these wretched symptoms, one might assume I would be confident rattling off my symptoms. That’s the problem with hidden disabilities. You learn to become a defense attorney that represents your symptoms from the first offense. Folks poke holes at your defense and you start questioning yourself! You live in your body and you know when something is off! Trust that.

I’m hoping these few simple points will help us both stay focused and remove some stress when tackling the next medical appointment.

Hugs and know that someone has your back.

Much love,
Marissa

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 
 

1000mg Of Hope

Me and 2.8 MILLION PEOPLE this month have been infiltrated by the nasty cold and flu invaders. This cold has wrecked havoc on my immunity for the last few days. The symptoms have been heavy head, congestion, sneezing, mild lingering headache, watery eyes, and fatigue. I am tired and irritable!

In hopes of gaining some symptom relief, I begin popping 12- Hour Sudafed sinus congestion and pressure pills. Within a few hours of taking the pills, my eyes stop watering, and the vice around my head seems to lessen, HOWEVER, the relief is brief and minimal! Regardless of relief, I still feel terribly sick, forcing me to dismiss the moments of interim relief. Yet, every 12 hours I find myself popping these pills!

sudafed

MOST of us have sampled majority of the cold medicines starring back at us on those cluttered store shelves. Temporary and minimal relief are your best hope. The medications won’t cure, they are meant to push us through the worst. We get desperate for any relief. Our medicine cabinets reflect that desperation! We pop a pill because desperate times calls for desperate measures!

THANK GOD, eventually in time, my immune system will dry up this cold, and it will be ridded from my body.

Wouldn’t it be comforting to know that a positive outcome awaits after illness ran it’s course?

Living with a vestibular(balance disorder) condition that is chronic, I have taken my fair share of vestibular suppressant medications. Lying there doped up on meclizine or valium in hopes of temporary relief that never came. The medications I have tried so far have been unsuccessful and have been counterproductive due to unpleasant side effects.

Which brings me to December’s 12-12-12 project member Pam. Pam is living with Generalized Dystonia. Dystonia being a disorder of movement.

According to Pam’s fantastic blog, Dystonia Muse: Chronicles Of A Dystonia Muse

Our muscles themselves are fine. They’re just receiving confusing instructions (“mis-transmissions”), like a mis-coached football team running around in senseless patterns, no offense or defense, as they fail to accomplish coordinated plays let alone score a touchdown!

In a blog post titled, “Introducing My Meds” , Pam describes medications that treat Dystonia…

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need.

Pam finds herself consuming a triad of medications. Her choice of cocktail:

1.) Trihexyphenidyl (Artane)- A member of the Anticholinergic family. One of the more common prescribed medications for Dystonia patients. This drug is responsible for blocking a neurotransmitter (chemicals in the body that transmits signals between nerves) called acetylcholine(signal transmitter from the nerve endings to the muscles)!

Pam says: “Artane appears to be the muscle in my regimen. Artane is an anticholinergic that blocks the action of acetylcholine.”

2.)  Sinemet( Carbidopa/Levodopa)- This drug is referred to as a Dopaminergic agent. It’s known to increase brain dopamine (Dopamine is the neurotransmitter that initiates and controls movement as well as balance).

Pam says: “Sinemet (Carbidopa/Levodopa) is used to synthesize dopamine. Both Artane and Sinemet are indicated for Parkinson’s. They are also used with Dystonia (off-label) to varying effect. Dopamine deficiency is the primary culprit in Parkinson’s, causing an imbalance between acetylcholine and dopamine in the movement centers of the brain.”

3.) Zonegran- Is known as an anti seizure medication. Anti-seizure medications can also help inhibit neurotransmitters.

Pam says: “I’ve never met anyone who takes Zonegran for Dystonia and occasionally come across someone on Tegretol. My assumption with the anti-seizure meds is that the involuntary muscle contractions can perhaps be approached as mini-seizures, but that’s purely my own logic.”

SIDE NOTE:  Thanks Pam for the crash course on Dystonia medications!

Remember, all Dystonia meds are prescribed off-label, meaning they aren’t indicated to treat Dystonia. Bottom line, the doctors can’t know why these drugs work until they understand Dystonia’s underlying mechanisms. And remember, response to medication is variable. What helps one patient may not help another.

My dream would be a cure for vestibular and movement disorders! However, if hope comes in 1000 mg tablets, that is a prescription I will happily fill!

I realize I am asking for hope in pill form, but It’s my hope that in Pam’s lifetime and in my lifetime, medications become available that kick these terrible illnesses into complete remission! We need MUCH MORE than temporary and minimal relief.

Much love,
Marissa

P.S. Be kind to EVERYONE this Holiday Season. Some of your family and friends are taking a cocktail of medications, pushing themselves to participate in holiday gatherings.

References:
U.S. Has Typical Flu and Cold Season, Despite Warmer Winter
NetDoctor- Dystonia 
Dystonia Medical Research Foundation- Glossary 
Mayo Clinic- Dystonia: Treatment and drugs 
RXList- Zonegran
Holistic Online- Parkinson’s Disease
Dystonia-Spasmodic Torticollis: Oral medications and Dystonia 
Dystonia-Spasmodic Torticollis: Dystonia and various medications 
WiseGeek- What is Dystonia 

Livin’ On The Edge And Trying Not To Fall Off!

Imagine being trapped inside your house for two solid days!

Majority of your day is spent chillin in your bed because every move you make induces nausea, heavy head, disorientation, and down right overall sickness.

For the last two days, this has been my script playing out. This Thursday was vestibular rehabilitation therapy. During VRT, I did well and showed small signs of improvement! Whoop. However, the stimulus and physical activity left me feeling like a wet noodle.

I fell asleep last night at 9:00pm (those that know me know this is a miracle!) and didn’t wake up today until close to noon! YES, you read that right. I woke up once in the middle of the night to pee, and woke up every hour starting at 6am. I felt too exhausted to get out of bed. Fatigue is SO brutal. I assume it’s my body’s way to protect itself.

I should confess that yesterday I drank a 16oz Monster Energy Drink (shhh, don’t tell babe. He thinks that stuff is horrible for me!) hoping to feel some sort of energy. It didn’t even touch me.

I woke up today to find a note left for me from my future-in-laws! They had left to run a few errands.

Hand written note to me from in-laws

I knew that Babe was with his buddies watching football.

Good for them! It makes me happy that those I love are living their lives and enjoying what’s good and fun in the world.

I actually felt OK after waking up this afternoon. “Feeling OK” is what allows me to go for walks and venture to places like the grocery, shopping, etc.

I started pacing the house and began feeling stir crazy! I hopped into the shower hoping to distract myself, but that didn’t help. Put on my clothes, makeup, and grubbed on some cereal.

Have you ever felt yourself screaming on the inside? This trapped feeling started to overcome me. I just couldn’t take it anymore. Screw it! I was going to walk to Starbucks.

When a thought becomes fixated in my mind, you can trust that it’s going to happen.

I got bold and sent a text message to babe saying I was going to head to Starbucks. Whoop!

Text message to babe

I grabbed my pepper spray, phone, walking stick, and headed out the door. I noticed I was a bit more wobbly than usual on my walk, but I ignored it! Screw that. I was going to complete my mission.

As I was walking I felt that internal screaming dying down. I actually felt happy to be outside. Beyonce’s “Diva” was playing on loop in my head (Sorry Blake! I know you hate that song, but it’s my jam!)

I arrived at Starbucks and confidently ordered a skinny latte with a splash of sugar-free hazelnut!

I made it back home, sat at the dinning room table, and started sipping my luscious $3.55 drink! OUCH! I felt a pain toward the back of my foot. What the heck. I looked down at my cute shoe, removed it, and caught a glimpse at what was causing the pain.

Starbucks- Venturing out to grab a Skinny Latte

Since you know I am all about the life lesson’s let me share a few….

1.) Start embracing “feeling ok”! I am going to start appreciating “feeling ok,” because I am now VERY aware of how limited my world becomes when I feel terrible!

2.) When going for a lengthy walk choose common sense vs. cute! It’s ok to rock a cute outfit from the ankles up. Comfortable shoes are your friend!

Much love,
Marissa

Officially a Legit Walker?

Hat, cotton shirt, pants, walking shoes, trekking poles, pepper spray, phone, and I head out the door to walk as many times a week as my health permits.

Increasing my walking distance and stamina post-vestibular disorder has been a LONG JOURNEY!

Here is a photo of my early vestibular(balance) days, when walking around the block felt IMPOSSIBLE….

Early vestibular days of me laying on couch next to my dog wearing sea-bands

I was in a funk and depression FOR YEARS after my vestibular dysfunction appeared. One day someone mentioned to me..

Marissa, you are going to be “dizzy” regardless if your inside your home or outside your home.

WHAT? Well heck! She was right. I initially dismissed her statement. Deep down I didn’t want to believe life beyond my four walls was forever changed.

She was right AND being logical! I was “dizzy” outside my home as well as inside.  There was no escape. SO, I have been pushing ever since to venture out more. Since this vestibular condition NEVER leaves me, it’s going to have to join me while I push
beyond the limits of what it permits.

I mentioned to my fiancé that I wanted to try walking sticks, and he purchased me a pair of trekking poles (THANKS BABE)…

Marissa's trekking poles

I snapped a photo of me on my first walk ALONE post-vestibular issues!…

First time walking alone post-vestibular using my walking sticks

I painted my walking poles purple for lupus awareness month….

Poles spray painted purple for lupus awareness month and POP Day

It started initially with walking down the block and eventually I reached 2.1 miles…

2.147 miles says my pedometer

All I want for Christmas is to walk AND complete a 5k walk for arthritis!

jingle-bell-runwalk-arthritis- 2012

 

I FINALLY hit 2.7 miles! (Please pray I get here again. I have yet to hit this milestone again!)…

2.75 miles says my pedometer

I was able to walk far enough (BY MYSELF) to purchase my own meals from el pollo loco AND subway…

El pollo loco receipt and Subway bag

And now I want to give a shout out to my cousin who sent me 3 AWESOME walking shirts (she is a racing, triathlon, diva!)…

Racing shirt my cousin sent me

Thanks girl! You are helping me look the part of a legit walker. :)

Much love,
Marissa

P.S   It’s ok if we fail or have setbacks let’s just promise each other to  keep continuing the take incremental steps in a forward direction! WE GOT THIS

Thank you Jenny Craig! Don’t Mind If I Do-5k Walking Training Schedule

“Ready, set, let’s get your booty walking”  It’s time to bust out a 5k walking training schedule!

That sounds like a plan to me!

For those that may not recall, I got the green light from my vestibular rehabilitation therapist to walk in the Jingle Bell Run/Walk supporting arthritis awareness.

I was PUMPED, but quickly realized I needed a plan of attack.

That is where Miss Jenny comes in…

I stumbled across her Run/Walk webpage that prepares their members to walk in the American Heart Association Heart Walk 5k (3.1 miles).

Walking Workouts - Prepare for Heart Association Walk | Jenny Craig

Perfect! It’s neat to see that walking can be just as SEXY and GLAMOROUS as running. Whoop Whoop!

Hope Miss Jenny doesn’t mind if I use her walking training schedule as my guide.

They offer 4 different training programs that will prepare you for a 5k.

Having a training schedule will allow me to achieve the following:

  • Work toward actually reaching the 3.1 miles before walk/run event.
  • Building up the stamina for the run/walk.
  • A workable plan to follow, keeping me focused on my goal.

My current health situation will present days where I may fall off the training program… BUT  I can ADJUST the program to work for me!  THANKS JENNY.

Off to schedule time for booty walking!

Much love,
Marissa

Update: All I Want For Christmas Is To Walk 5k To Fight Arthritis

The VRT specialist said YES!

I get to walk in the 5k Jingle Bell Run/Walk for arthritis.

Jingle Bell Run/Walk Arthritis logo

Can I get a…. WHOOP… WHOOP!

She expressed two concerns:

1. I have to use BOTH sticks.

– Additional balance support is a smart move.  I am down with that.

2. HOW will I handle the large crowds of people?

– She put her hands on her face worrying how I was going to deal with the  large amounts of people! I jumped in and quickly suggested…” I promise to stay at the back of the pack.” She looked a bit relieved.

– She wants me to look into pre-registration SO I can avoid the large crowds.

Time to drop a little balance education on you!

WHY would large crowds and open spaces be bothersome to a person with a vestibular disorder?

According to VEDA (Vestibular Disorder Association) a POSSIBLE symptom of a vestibular sufferer is…

Difficulty finding stability in crowds or in large open spaces

WHY would I need two walking sticks you may ask? Because there is a…

Tendency to touch or hold onto something when standing, or to touch or hold the head while seated

The sticks provide me a bit of comfort! I need all the comfort I can get.

Much love,
Marissa

P.S. If you live in the Southern California area AND are living with a vestibular disorder hit me up! Maybe we can walk the race together?  We have a little less than 5 months to get in gear. WE GOT THIS!

All I Want For Christmas Is To Walk 5k To Fight Arthritis

Jingle Bells Batman…I HOPE I have not lost my marbles.

I have decided to attempt to walk the Jingle Bells Run/Walk 5k for Arthritis this December in Glendale, CA.

JB

DID YOU KNOW…

Arthritis is the leading cause of disability in the United States.

CHECK OUT the event info:

2012 Jingle Bell Run_Walk - Los Angeles, CA - Event Information

DID YOU KNOW…

Fifty million Americans (1 in 5 adults) have been diagnosed with arthritis by a doctor.

 

Help me FIND A WAY to get around some foreseeable obstacles.

1. Visual stimulus can be OVERWHELMING with a vestibular condition. Crowded restaurants, malls, and  grocery stores produce  sensory overload. Walking solo is one thing; walking alongside hundreds of people is another ballgame.

Question: Would it be smarter to start at the back of the race/walk  pack?

2. I have become quickly accustomed to using one walking stick. I prefer it.

Question:  Should I start using both sticks with the added stimulus of an event like this?

3. Registration begins from 6:30-8:00am. I expect a ton of people and long lines (Maybe i’m wrong. I have never done something like this before). I don’t need to be sidelined before I even get to participate!

Question: Do you think they would consider allowing me to pre-register so I don’t have to deal with the crowds?

4. It has taken me 7 years to be able to walk 2.1 miles.

Question: Do I have enough time to prepare for a  5k?  How many days a week of walking would I have to log in to achieve the goal? (Note: I walked a total of  3.5 miles today, BUT I had to stop at the 1/2 point  resting 20-25 minutes before I could make it back home.) I want to have enough stamina to make it through!

I will speak with my Vestibular Rehab Therapist (she is gonna love this) on Thursday to see if I can get the green light! FINGERS CROSSED!

Much love,
Marissa

P.S. FIRST THINGS FIRST… Getting permission.