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!

The Spin Sisters Podcast: Episode #2- Chronic Illness and the Holidays

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( *To download episode to desktop: Right click  ”Download”>Save as or Save link as.)

Santa feeling stressed

December 18, 2013

Ready or not, the holidays are upon us!
Are you getting buried in tinsel?
We completely get it!
Also, we talk how to tackle New Year’s resolutions.
Let’s confront these holdiays together…

Show notes:

Living with chronic illness during the holidays
10 tips to beat the holiday blues 
New Year’s resolutions and chronic illness 

Gift ideas for the holidays:
63 gifts under $10.00
White chocolate holiday bark

Connect with us! We would love to hear from you over on our Facebook page…. The Spin Sisters Podcast

With Love,
Marissa & Jane

PS: Happy Holidays to you and yours!

*Image: stockimages

 

How Many Years Can Chronic Illness Keep You From Marriage?

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.

 

iOS 7 Debacle Regarding Vestibular Disorders

iOS7- iPhone hero shot by Apple

September 18, Apple released iOS 7. Adoption rates were being touted as high as 35% on day one.

I admit, I was salivating over the new iOS, overly eager to pounce on the anticipated update.

UNTIL… I got the text message alert from my fiancé!

“Bug, not sure if you have updated your phone, but don’t do it just yet… I had to update mine and the movement might bother you…”

Movement?

I said to myself…”What the heck is this guy talking about?”

Then it hit me! I found myself transported back to the iOS 7 Apple 2013 Keynote.

Craig Federighi, with his lovely locks of hair, passionately announced…

“As you move the device in your hand, it actually tracks your motion. It has Parallax, you can see behind the icons. It’s really incredible, and it carries across the system, this liveliness…”

I recall sitting through that streaming keynote thinking… “Oh S**T … ParaWHO?”

Like an awful blind date, I guess I blocked it out… DENIAL.

What the heck is a Vestibular Disorder?

You see, I have a Vestibular (balance) disorder.

A catastrophic disconnect between the vestibular system (includes the inner ear balance organs) and the parts of my brain that coordinate and process balance information.

Your brain is miraculous and often has the ability to compensate for damage, but I happen to be one of the unlucky ones that failed to compensate.

It appears, the balance areas of my brain are incapable of change.

My most unsettling symptoms are:  Chronic disequilibrium, bouts of vertigo, nausea, fatigue, vision sensitivity, anxiety, insomnia, and cognitive disturbances – I’ll let you visualize how these nasty symptoms interfere with a “normal” life workflow.

Folks living with vestibular disorders suffer a battery of debilitating symptoms from vertigo and dizziness to hearing changes. You can find a full list of symptoms here.

Can I catch a Vestibular Disorder?

Fair question!

“The vestibular system can be compromised in many ways. Viral infections (labrynthitis and vestibular neuritis), disorders that affect the inner ear fluid levels (Ménière’s disease and secondary endolymphatic hydrops), trauma from head injury, benign tumors (acoustic neuromas), and age related degeneration can all cause permanent damage to it. “

I don’t want to leave out my dear friends that suffer from debilitating symptoms like vertigo, nausea, and dizziness stemming from neurological conditions like…MS and long-standing brain stem lesion.

What’s the big deal, can’t you just get a Droid?

Let me stop you right there!

This isn’t about affordability of phones…. simply not updating your phone… or switching cell phone devices!

This is an issue of access.

If a group of individuals are vocalizing that a feature of technology is making them physically sick or exacerbating symptoms, and they can’t access technology, this should be taken seriously.

The future of the web and technologies that access the web are rapidly changing,  but access by EVERYONE regardless of disability is a founding principle.

The power of the Web is in its universality. Access by everyone regardless of disability is an essential aspect. — Tim Berners-Lee, W3C Director and inventor of the World Wide Web

I’m afraid to update my phone, because what if I get sick?

Not every person living with a vestibular disorder will be affected. It’s been noted, various folks living with a variety of vestibular disorders HAVE NOT been afflicted.

Don’t be afraid!

Someone within your 15 mile radius has an iPhone, ask to use it!  To be on the safe side, head to the Apple store (It’s been suggested to get there early AM…You know how we are in crowded malls!).

Have one of the Apple associates disable Parallax, and if the aggressive zooming in-and-out of icons and folders don’t appear to bother you… BAM… your one of the lucky ones. Update that baby!

Where can I learn more about iOS 7 and how it’s affecting people?

Here are a few fantastic articles that have surfaced:

 iOS 7 Animations Cause Nausea for Some.

Why iOS 7 is making some users sick

iOS 7 and motion sickness: What you can do, and where you can learn more

The rise of digital motion sickness: Video games, 3D films and iOS7 set to make condition the 21st century’s biggest occupational disease 

Where can I voice my opinion and concern:

I like your awareness spirit!

1.) Join the active discussion on the Apple support forum:

Any way to turn off iOS 7 navigation animations 

2.) Email Apple’s accessibility team, and express your concerns:

Apple’s an awesome company that’s shown a willingness to address accessibility issues. Their accessibility email address… accessibility@apple.com

 3.) File a report with Apple:

Jenni Leder, mobile app developer,  is suggesting… “file a report here: bugreport.apple.com and use this number so it duplicated: 15074144″

If you’ve never filed a bug report, see what Jenni’s bug report looks like.

4.) Join in solidarity:

*Head over to imore’s blog and complete the iOS 7 motion sickness poll.

Final Thoughts:

I’ve said enough!  Let the words of independent iOS developer, Matt Gemmell,  reverberate throughout your body…

“Accessibility affects everyone, and devices should be usable in all situations, by as many people as possible. Designing for accessibility levels the playing field, and increases the utility of devices for everybody.”

References:

Vestibular Disorders Association.” Home. Web. 29 Sept. 2013.
“Designing for Inclusion.” Designing for Inclusion. Web. 28 Sept. 2013
Boismier, Thomas E. “Vestibular Injury.” Compensation, De-compensation, and Failure to Compensate (n.d.): n. pag.Http://vestibular.org/sites/default/files/page_files/Vestibular%20Injury.pdf. VEDA. Web. vestibular.org.

Much love,
Marissa

PS: Change is slow, but possible!

PPS: To those that have found themselves subjected to hundreds of demoralizing, hateful, insensitive comments on various blogs… HUGS. You have a community that supports you and understands you. My girl Jane and I got your back! Connect with us over on Facebook via The Spin Sisters Podcast!

*Motion sickness appears to be the umbrella term used, but for those of us experiencing heightened vestibular symptoms triggered by the device, I believe we qualify to fill out the poll.

** Shout- out to Craig Grannell for taking on this issue and being one of the first to report it!

iOS7 Update Setting off Vertigo, Dizziness, Nausea and more

We’re all for advancement, but this is getting personal. Who wants to use a mobile device that triggers vertigo, dizziness, nausea…

 

Much love,
Marissa

PS: PLEASE SHARE and help us bring this important matter to Apples attention.

Stop Doing This Alone

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”…:

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.


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!

Zimmerman- What Have You Done?

I think of Tracy Martin and Sybrina Fulton (Trayvon Martin’s parents)… DAILY!

Tracy Martin and Sybrina Fulton

Source: Change.org

My heart is SO FULL for them.

I had to get some emotion out…

Zimmerman
Boiled over rage,
Geared up to engage.
Pent up frustration,
Misguided antagonization.
Vulture seeking prey,
Unwilling to obey.
They commanded you to stop,
Pissed you didn’t make it as a cop.
You already made a decision,
You would hunt with precision.
The devil took over,
Couldn’t shake him off your shoulder.
Concealed semi-automatic gun,
You took away a families loved one.
Could it have been a clouded decision?
Your lack of vision caused a collision.
I pray for your soul.
Your spirit will take a toll.
Reminded us that racism is silent.
Hoping the streets don’t get violent.
Could there be you in all of us?
Silently waiting to make a ruckus?
I pray this can’t be true,
But hate is an easy emotion to ensue.
There may be a silver lining,
God will reveal in his own timing.
Until then I pray for the family,
Trying to make sense of this senseless tragedy.

Tracy and Sybrina have asked us to sign a petition over at Change.org

We’re calling on 21 governors whose states have some form of ’Stand Your Ground’ laws to review those laws and amend them so that people who instigate conflicts…

You can sign the petition here: http://www.change.org/petitions/change-for-trayvon-stand-your-ground-laws-must-be-reviewed

Much love,
Marissa

PS: Thank you for being open to this blog post. I realize the blog is chronic illness and vestibular disorder focused…

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…

The Spin Sisters Podcast: Episode #1- Grief & Loss

Play

Woman clenching face with hands on head

July 2, 2013

Kicking off the first episode of The Spin Sisters Podcast! We don’t jump into the trenches, we dive head first! We attempt to tackle the heavy topic of chronic illness and the stages of grief and loss that often suffocates a chronically ill person like a wool winter blanket.

Show notes:

VEDA
Yahoo Sport Article- Dana White Says PRP Therapy Helps Inner Ear Disorder
Orthokine- Wikipedia

Orthogen clinic: 
http://www.wehling-hartmann.de/wir-ueber-uns/
http://www.orthogen.ch/en/index.htm

Facebook pages/forums:
VEDA
Dizziness Blues
Dizzy World Cafe
Migraine-associated vertigo forums
Labyrinthitis.org.uk

Grief & Loss:
Elisabeth Kubler-Ross foundation
List of books by Elisabeth Kubler-Ross
Seven Choices: Finding daylight after loss shatters your world 
5 Stages of grief shared from the perspective of a physician living with Meniere’s Disease

Connect with us! We would love to hear from you over on our Facebook page…. The Spin Sisters Podcast

With Love,
Marissa & Jane

PS: Please list the resources you have found helpful!