Traveling to Washington, D.C. | Traveling with vertigo

What an experience! I was lucky enough to have VEDA (Vestibular Disorders Association) nominate me to represent the vestibular community at the NORD (National Organization of Rare Disorders) gala in Washington, D.C. It’s been a little over a month since my return from DC.

US Capital

View of the US Capital from the US Botanic Gardens.

Here’s a few highlights:

  1. Stumbled upon two women living with vestibular dysfunctions. One gal has battled motion sickness since childhood, and the other suffers from Meniere’s disease. Both gals work for the airline I was traveling with. Small world!
  2. I met Tom, a fellow dizzy friend I connected with via the blog! He took a train bus from Ohio to DC just so we could hang out. It was comforting to spend time with someone that “gets it”!
  3. I survived a 5 hour flight… both ways!
  4. I attended my first gala, where 250+ supporters of the rare disease community heard the word “vestibular” for the first time!
  5. My husband and I were invited by a member of Congressman Fred Uptons staff to have a private tour of The Capital.
  6. I dined at more than one busy restaurant in a single week…and survived.
  7. I made it up the Lincoln memorial steps! (Tip: Use the side rails and your walking stick.)
  8. I walked a mile, to and from the local grocery store, on congested streets by myself!

 

Two pals living with chronic vertigo

Two dizzy pals meet: Tom & Marissa swapping dizzy stories over lunch!

Exciting experiences still possible

I NEVER imagined experiencing any of the aforementioned highlights post vestibular dysfunction.

Traveling to Washington DC was my first major trip away from home since that initial life robbing vertigo symptom presented itself.

It’s been a harsh 9 years living with a vestibular dysfunction. Majority of my time has been spent behind the four walls of my room. I’ve dreamed of once again having life altering experiences, but assumed exciting travel was no longer part of my story.

I now believe in possibility. Courage now has tangible meaning. I can say with confidence that life can still paint meaningful highlights, in spite of chronic illness.

 

Lincoln Selfie

Had to get in a Lincoln selfie!

Always prepare for a little gloom

I have to acknowledge there was gloomy side to this trip. I quickly realized how isolated the vestibular community is from the remainder of the chronic illness population. We technically don’t qualify as a rare disorder. According to the NORD website “In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans.” I’ve read estimates as high as 69 million people in the US have experienced a vestibular dysfunction. Also, majority of the rare disorders acknowledged at the NORD gala were traced back to a genetic abnormality. Once a genetic abnormality is identified, a drug protocol treatment plan becomes a possibility. Vestibular dysfunction, on the other hand, covers an array of disorders. Folks are left with disabling symptoms that may or may not stem from a genetic abnormality. We’re often living with subjective symptoms that don’t have an identified source. Hence, this may be a reason why updated testing and treatment options are minimal.

I can’t thank NORD enough for taking us in and welcoming vestibular disorders to the table!

This trip made it clear that WE MUST support VEDA. Effective treatment options will present once we have access to updated diagnostic testing. We will have access to technologies when awareness becomes so overwhelming we can’t be ignored.

Portraits of courage posters at gala- highlighting chronic vertigo

At the gala, posters were displayed highlighting stories of patients and families living with rare diseases.

Never ease up on your grip of hope

I left DC in hopeful spirits. I believe technology and time will collide producing effective treatment options and cures for folks battling chronic dizziness and vertigo.

I leave you with this. Don’t lose hope. Year one I was so disoriented I could hardly circle my neighborhood block! Yes, technically I’m now back behind the four walls of my room, but at least I can hold onto the hope that future positive life experiences are possible. I can’t say it gets better, but I can say you will learn to adapt and survive.

Much love,
Marissa

PS: Thanks to NORD and VEDA for this life changing experience!

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

Life Lessons From The Cemetery

Hanging out in the cemetery does something to you. More specifically, it does something to your inner-spirit.

The cemetery is walking distance from where I’m staying. It’s a place I frequent often, and it’s become part of my walking ritual.

I could take a different route, but I choose to walk through the cemetery as often as possible. Something draws me there.

At first, I thought it was the beautiful landscape. I became convinced it was the solitude I craved. Now, I realize I’m drawn to the cemetery for a different reason.

Today, I found myself being pulled toward a particular tree on the cemetery grounds.

I sat down and was surrounded by hundreds of burial plots. It wasn’t eerie. It was comforting.

Have you been to a cemetery lately?

You’d be amazed how beautiful a cemetery looks during the holiday season.

The living have decorated with Poinsettias, Christmas trees, and an array of festive holiday decorations. It’s breathtaking.

As I sat there, I found myself fixating on one particular burial plot. It was amazing. Christmas tree, ornaments, lights and festive trinkets. It was a Christmas celebration.

Then it hit me, only the living can experience the holiday festivities with their family and friends!

Would this individual trade places with me knowing that I’m living with a chronic illness?

I’m certain he would!

I’m certain he would take on my current health burdens in exchange for being in the presence of the awesome people who honor him in such a publically visual way.

I’ll leave you with this.

On the Christmas tree was a large sign decoration with the word “Hope”.

beautiful visual display of love

I’m convinced the decoration is a positive reminder for all those that stumble upon this post.

Hope:
Hope you find a cure.
Hope you find peace.
Hope you find love.
Hope you find acceptance.
Hope you find…..(whatever makes you appreciate that your still among the living.)

Much love,
Marissa

PS: Walking through this cemetery has changed me. It’s going to be a constant reminder of how blessed I am to be among the living despite chronic illness!

How Many Years Can Chronic Illness Keep You From Marriage? | Life With Chronic Illness

Engagement- hands behind back holding ring box

Image by: scottchan

I need you to listen up now! I don’t want you to make the same mistake I did… SO PLEASE… pay attention.

Maybe you’ve come across the discouraging stat: 75% of marriages end in divorce when a spouse is stricken with chronic illness.

This distressing statistic didn’t even phase me. Getting through a wedding day terrified me!

I’d been engaged for years before I even considered getting married. (Didn’t Babe know about the stat?)

When Babe proposed I didn’t hear “Will you marry me?” I heard… ” I ACCEPT YOU”!

Chronic illness really messes with your head! A specific piece of information comes into the brain for processing, but your so battered from feeling like s@%t you don’t properly process the intended message.

See, the acceptance message I pulled from Babe’s proposal was all I needed. I wanted to stay exactly in that moment. Acceptance was my happily ever after!

After the unforeseen engagement, I didn’t run out and purchase bridal magazines, start a “wedding of my dreams” Pinterest board, and I sure wasn’t in the headspace to set a date.

Don’t get me wrong. I was on cloud nine knowing I would be spending the rest of my life with an AWESOME man that made my heart flutter!

So, what was the problem? I was uncertain.

Questions started to collect:

Can I make it through my wedding day? How long can I stand still during the ceremony? Should I hire a DJ even if I can’t dance at my own wedding?

The questions kept coming!

The burden of questions became paralyzing. I didn’t have the “right” answers. I didn’t know who to turn to for support. When I did attempt to express my feelings, to a select few, I didn’t want to accept their solutions.

Weddings are supposed to generate one of the happiest days of your life, however, questions piled up so high I couldn’t see how I was going to experience a joyful day.

So, I did what most people do when their facing an uncomfortable situation, I avoided it. I steered clear of the idea of marriage. I was content with being engaged.

Funny thing happens when you attempt to avoid something specific, it ALWAYS seems to show up!

I couldn’t attend a major family function without someone hinting about wedding dates and plans.

Didn’t they get it?

You see, marriage was only possible after “the miracle”. I was waiting on a cure!

It’s evident that my hesitation to get married was kept alive by a belief that I was going to be miraculously cured.

Subconsciously, I REFUSED to entertain the idea of getting married. ONE DAY I was going to have a joyous wedding day, which was not possible if I remained chronically ill! ( What a horrible message to have continuously playing in the background!)

Listen up: DON’T make this mistake. Don’t distance yourself from experiencing joy because your waiting on a cure. Don’t bombard yourself with burdens that will bury you. Surround yourself with practical solutions that lead to positive outcomes.

If you find yourself asking questions that don’t have meaningful and productive answers… consider rephrasing your questions!

I’ll leave you with this.

Last month I got married. WHOOP…WHOOP… We ELOPED!

I couldn’t have been more proud of us as a couple. It wasn’t about dancing, being walked down the aisle, or making it through the day.

It was about our commitment to one another. It was about creating an environment that allowed us to celebrate one another. It was about putting ourselves in a situation where we had the opportunity to process and experience the beautiful union known as marriage.

I LOVE being married. I LOVE being a wife. I LOVE that I get to be happy despite chronic illness.

In sickness and in health!

Much love,
Marissa

PS: Babe and I were engaged for 7 years before we got married!

PPS: Crazy thing…in my mind we’d only been engaged for 3! Allow me to repeat: Don’t keep yourself from experiencing joy because your waiting for _________(insert whatever excuse you’re currently harboring.)

Start Writing Your Own Prescriptions (RX)

Daily RX pad

Photo by: voraorn

Just admit it…

Your sick and tired of feeling “sick and tired”.

One cry away from being “all cried out”.

Taking pills for “this” or “that”…Distressed by the number of pills you’re forced to take, or resentful because there’s not a pill to treat your condition.

What if you possessed control over the prescriptions you’re being administered?

I get it… the physicians in control… in possession of a magical prescription (RX) notepad that grants access to a rainbow of drugs that can treat MANY symptoms you’re battling.

While this is true… maybe it’s best we’re not granted full access to this magical prescription pad. We might soon find ourselves with another problem – ADDICTION!

Alright, let’s agree to leave legal-drug-pushing to the professionals, but…

Have you considered writing out your own “Daily RX”?

Call me crazy, but I’m going to bet on someone… YOU!

I’m going to bet that YOU can safely write yourself out a daily RX that strengthens your inner-spirit.

Inner-spirit?

I’m not going to get woo-woo or preachy on you, however, I’m going to challenge you to develop a plan to combat the dark emotions that accompany chronic illness…

A plan that helps you withstand: Anger… fear… stress… worry…

A daily RX, you prescribe, focused on enhancing your quality of life.

Unless your physician is Patch Adams, you won’t be prescribed the following RX list:

  •  Watch a funny YouTube clip.
  • Make your bed.
  • Take a shower and brush your teeth .
  • Open your windows to let in some fresh air
  • Pray
  • Meditate
  • Write for 15 minutes on any topic of your choosing
  • Send an email off to someone you admire
  • Read something uplifting for 15 minutes

 

Seems silly, right?

Who’s sillier?:

Person A: Chooses not to wear a life jacket while kayaking.

Person B: Chooses to be properly fitted for a life jacket that may save his/her life in case the kayak capsizes.

Uplifting, daily RX lists, are your properly fitted life jacket! An important part of your safety equipment that keeps you from drowning into the emotional, dark, murky waters of chronic illness.

I’m hopeful with regular use, you may start to see the positive side effects!

Dont sabotage, just start!

My list often contains 3-4 daily prescriptions. (If you’re hesitant, start experimenting with just one daily RX!) There’s no “right” or “wrong” way to do this.

Daily RX list written of whiteboard

I use a whiteboard, but i’m considering purchasing my own RX pad!

Are you open to sharing what you’ll consider adding to your daily RX? If so, comment below.

Much love,
Marissa

PS: If you suffer from anger… fear… stress… worry… etc. on a daily basis, please consult with your physician! Hugs, and know your’re not alone! There’s help out there.

 

Stop Doing This Alone |Life and chronic illness

The science is there…

As humans we yearn for it…

Unhappy woman holding up hand to block face

Image source: David Castillo Dominici

“We are wired to connect”

So, what’s the initial response when you get sick and branded by chronic illness… you disconnect.

Epic social shutdown…

The first few years you’re trying to figure out how to manipulate your “new” body, forcing yourself daily to be “somewhat” present. You could care less about connecting with people.

A few years of being smothered by anger and depression, you’ve likely shut yourself off from social interaction.

If your illness has left you homebound, your exposure to social interaction is slim to non existent.

It’s not your fault! You’re confronting limitations and addressing health concerns.

But,  it’s important you understand that lack of social interaction is harmful to your health

Yes, isolation is harmful to your health!

While you’re in isolation mode, your social skills are not being challenged.

Remember what happened to Tom Hanks (Chuck Noland) in the movie Cast Away? His need to connect, and forced isolation, drove him to turn a volleyball into his best friend… AKA Wilson. (Heads up… I tried to watch the scene on YouTube, and I couldn’t get through it! Yikes… talk about movement. )

Instead, here’s the audio of Chuck Noland losing ” Wilson”…:

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Download the audio

For those that can handle movement in video:

Can you relate? Replace the word “Wilson” with (insert your name) “__________” . Talk about a lesson in letting go!

I lost it when “Wilson” get’s lost at sea! Terrible.

Eventually, like Noland, you’ll move through the grieving process and then what?

Rebuilding and reconnecting!

I hope you’re convinced or at least questioning the importance of connecting again.

No need to rush. Start out slow…

1. Consider joining a Facebook group and answering  a few Facebook posts . ( I’ve met AWESOME people through various Facebook groups, and even connected with a few people via Skype.)

2. How about listening in on a chronic illness support group call? Chronic Pain Anonymous is awesome. Here’s the link: http://www.chronicpainanonymous.org/services/phone-meetings/

Don’t be afraid to fail.

It’s been awkward trying to reconnect with people, especially from my past, but that won’t deter me, and it shouldn’t deter you!

Reconnect and rebuild… you’re worth it… your overall health depends on it!

Much love,
Marissa

PS: You need someone to connect with… I got your back. Shoot me a message via my contact form, or comment below. We got this!

Could you be making the mistake of trying to rebuild your life with broken pieces from the past?

Source: David Ritter

Source: David Ritter

Let’s get real…

Someone just threw a rock through your living room window.

Their not done! They run around to the back of the house and smash your bedroom windows, and they bash in that beautiful bay window you’ve just had installed.

How do you feel? Shocked? Scared? Pissed?

You call the police. Your statement is taken, and a report will be written up.

Now what? You have broken windows throughout your home, and your dwelling is vulnerable.

Since we’re talking in hypotheticals, you CAN’T have a repair man come out and fix these windows. You CAN’T call on your spouse, neighbor, or best friend. It’s YOU fixing the problem.

It’s 2:30pm on Sunday. Time is tickin’

What are you going to do?

You pause for a few minutes and decide to take a taxi to Home Depot. (“A taxi?” Sorry, your medical condition doesn’t allow you to drive.)

You get to Home Depot and start wandering about the store.

The intimidating vastness of Home Depot is upon you. You run into a customer service rep, and they direct you to the hardware aisle.

Staring back at you are foreign objects known as charcoal fiberglass screens, steel patio foot rollers, splash guards. What the heck? Where are the windows?

Unfortunately, you’re not going to walk down a prefabricated aisle called __________ (insert your name here) window repair aisle.

You will need tools and materials such as putty knife, paint brush, glazing compound, etc.

You simply wanted shiny new panes of glass and easy assembly instructions.

I know what your thinking.  “Get to the point! What does this have to do with the broken pieces of my life?” Hang with me, this is a journey we’re taking, not the destination.

Did it EVER ONCE cross your mind, that in order to repair your broken windows, you would have to pick up EACH PIECE of glass and reassemble it?

“Did she just say to pick up EACH PIECE of BROKEN glass and reassemble the windows with super glue glass adhesive?”

That would be crazy, wouldn’t it?

You understood there was a place that housed tools and materials that would aid you in repairing your broken windows.

It may have occurred to you, like those windows, you feel broken. Something outside of your control has left you shattered and vulnerable.

You’re ready to move forward and repair, but your trying to REASSEMBLE a life with the broken pieces from your past.

It’s going to take NEW tools and NEW materials to REBUILD the broken pieces of your life.

Much love,
Marissa

PS: “What are these new life tools and materials you speak of that will repair my life?” I’m not ashamed to say… I have NO CLUE.  I JUST realized I was trying to rebuild my life with broken pieces from the past. To be continued…

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

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

Note attached to Gram's refrigerator.

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!