Balance Awareness Week: Vertigo SUCKS

Vertigo SUCKS!

Living this nightmare for the last nine years has changed me. EVERY aspect of my life has been altered by disruptive daily symptoms.

A vestibular disorder (includes the parts of the inner ear and brain that help control balance and eye movements) is the term that encompasses the following horrific symptoms.

Here are just a few…

  • Visual-spatial problems
  • Excessive clumsiness
  • Poor hand-eye and eye-foot coordination
  • Trouble moving in the dark
  • Difficulty reading or concentrating
  • Fatigue
  • Vertigo
  • Dizziness
  • Head may be held in a titled position
  • Tendency to touch or hold onto something when standing, or to touch or hold the head while seated

The first few years

The first few years of silently battling these symptoms left me feeling depressed and isolated.

The symptoms are often subjective, and medical practitioners have a difficult time believing in symptoms that can’t be tracked with lab tests or imaging. I thought I was going crazy!

VEDA to the rescue:

VEDA (Vestibular Disorders Association) entered my life at a low point. It provided me with information that enabled me to rebuild a solid informational foundation. I felt more confident communicating with doctors and specialists. This newfound confidence allowed me to determine which medical professionals were qualified to look after my well being and would help elevate my quality of life.

I’m forever grateful to VEDA for catching my back, and I want to make sure they’re around to support the next sufferer.

What can you do?

  1. Acknowledgment: I can’t tell you how many people I’ve encountered that have dismissed my symptoms because I “don’t look sick”! It’s disheartening and disrespectful.
  2. Spread awareness. They say awareness is the catalyst for change, and I’m hoping you’re willing to be a change agent! Balance Awareness Week is Sept 15 – 21, 2014.

I would appreciate you spreading this “Feeling Dizzy” Info-graphic (PDF) (JPG)

Feeling dizzy? You may have a vestibular disorder!

Infographic by: VEDA @ vestibular.org

Also, if you have the financial means to do so, I would appreciate your donation. Your funds will be going to help VEDA!

Balance disorders MUST BE eradicated, and it’s starts with awareness.

Much love,
Marissa

Who Cares About Improvement When You Still Feel Like S#*%

Feeling better is the reason you would go through therapy or any health treatment, RIGHT?

Who doesn’t want to show improvement?

Maybe you can relate…

You are deep into therapy or treatment, and each visit comes with its own set of questions.

  • How are your symptoms?
  • Are you feeling better?
  • Where are you on a scale from 1-10?

I GET IT… successes AND failures must be measured.

  • Where are you at now?
  • Are you at a 6?
  • Are you able to recognize what helps reduce your symptoms?

MOST PEOPLE might think twice about spending a decent chunk of their day performing exercises that would cause them to feel worse in hopes they get somewhat better.

It’s crazy. Right? WRONG!

A lesson smacked me upside the head today!

7 years ago when the vertigo and disequilibrium set in, I could not even walk around the block. I felt so nasty I hardly ventured out of the house.

Check out this photo! I am not sure what inspired babe to take this photo of me (SO glad he did. I have something to show ya!)

Marissa in the early days of the vestibular madness  laying on couch rockin sea bands

I am rocking two sea bands and riding out the nausea and room spin.

*Sea-Bands are a bracelet that is supposed to help with nausea and motion sickness.

(I was desperate! I would have tried ANYTHING at that moment in time. I am still open to trying MOST things.)

After the walk today, I glanced down at the pedometer, and it read… 2.147 miles!

Pedometer reading 2 miles

WHAT THE HECK!

It took me 7 YEARS to go from barely making it around the block to being able to walk 2 miles!

I can confidently say I am walking 2 more miles than many able bodied persons.

Do I feel like hell after my walk? YES

Do I struggle throughout the walk? ABSOLUTELY

Has the dizziness, disequilibrium and vertigo changed much in the last 7 years? NO

So why even try? BECAUSE… Small improvements + action= PURPOSE

I will no longer poo-poo or shy away from recognizing and acknowledging small victories (YES… improvement)!

Much love,
Marissa

What? You’ve Never Seen a Young Person With a Cane!

How many of you are in your 20-30 somethings, rockin a cane or walking stick? You found yourself in the middle of a health crisis, and now a cane or walking stick has been introduced as your new best friend.

Do you recall your reaction when handed down the order? Were you shocked? Accepting? Pissed? Did you refuse to use the “walking aid?” Can I share with you something personal?

My last Vestibular Rehab appointment ended in a mini meltdown. Things were moving along just fine until the closing of the session.

The PT(physical therapist) casually throws out the statement, “Marissa, would you consider using the walking stick all the time?” She followed up with some additional words, but I tuned her out. I offered a quick, (and what I felt was compelling) persuasive, rebuttal, “I am in my early thirties! What is everyone going to think?” Next came the ugly cry.

The ugly cry must have been disgustingly ugly because the seemingly stern, AWESOME, physical therapist let out a few tears. In the middle of crying, trying to justify why I could not use awalking aid,” I was gripping onto a nordic walking stick!

She calmed me down by agreeing to pump the breaks on the idea if it became a source of anxiety or stress. She didn’t hesitate to follow up with a statement reminding me how often I used the walking stick during our appointment.

Babe to the rescue! He offered the suggestion of starting off slow. “We will start by putting it in the trunk when we go out!” We all agreed.

When things settled down, I was offered a piece off advice I could not tune out…”Marissa, give people an opportunity to extend you grace!” The only message swirling around my head was that people were going to judge me. A condition considered invisible was about to become visible. That small glimpse of hope for a cure vanished.

It’s not like I’m unfamiliar with walking sticks! I take them on walks around the neighborhood and the park. When I head to a public place, I leave them at home and replace the sticks with babe. Using them all the time feels like a different ballgame.

Why a “walking aid?” According to trusty Wikipedia, “walking aids,” provide …

  1.  Improved Stability
  2. Reduces lower-limb loading (If you are like me, you questioned this one. Basically, it means lower impact placed on affected limbs)
  3.  Generating movement (Larger joints and muscles are used during walking and the aid helps take the pressure off. )

From what I gather my vestibular (balance) and somatosensory systems are jacked…the ultimate miss communication going on! Have you lost your balance and found yourself immediately drawn to the wall? Same idea. I am not using the walking sticks solely for balance support. I am using them because I need immediate feedback!

ANYTHING that provides immediate feedback helps me function. So you will often find me touching walls, gripping the shopping basket, holding onto babe’s shoulder, leaning against walls. Since I can’t build a fort around myself, there is clinching my teeth, hands in my pocket, pacing, etc. I had no clue I was adapting for deficits until the PT mentioned I looked like a moving chicken…head bobbing and all!

I am wrapping my head around the idea of using a single nordic walking stick,( basically a modified cane) all the time. I am going to start slow. Hoping SOMEONE can help convince me to go-all-in, so I can bypass this introductory phase and ACCEPT THE FACT!

Much love,
Marissa

P.S. Why does the word “Cane” have to sound so harsh! Say the word out-loud and see what I mean! Now say the words…CANDY cane, SUGAR cane, DEAN Cain( 20-something year old version). That sounds much more soothing.

Sometimes You Find Yourself Freestyling Life

Play

My life is anything but a well executed, thought out, lyric. I consider my life raw and often times messy. Chronic illness has found a way to complicate, yet simplify my life. Every Friday I partake in Vestibular Rehabilitation Therapy (VRT). The therapy has a tendency to kill me softly. On the day of VRT, my physical therapist asks that I not partake in any visual stimulus, so I often find myself, lying in bed, listening to podcasts and audiobooks.

During VRT, we work on posture, coordination, vision, and core strengthening, therefore, Saturday I wake up feeling as if a truck hit me. Come Sunday, I began show traces of my familiar disequilibrium self. I don’t get out very often, so by the time sunday rolls around I am stir-crazy. I have found that long durations behind four walls can be madding; therefore, positive distraction is critical.

Babe and I were clicking through the channels and landed on VH1’s show, T.I. & Tiny. Tip’s son, Domani, was given a chance to write a song and perform it within two days. My mind began racing. Throughout the years, I have hinted at babe that I can write rhymes. I have gotten some interesting glances throughout the years. So, this Sunday, during the show, I asked babe to participate in the creation of an off-the-cuff hip hop rhyme. It’s important to note, I am low budget, and don’t have any equipment, so the sound quality is not important. This was a sporadic attempt at positively distracting myself.

Disclaimer:

Do I think I can rap or freestyle? No.

Do I think I will have a career in music? No.

Do I think I am little crazy sharing my personal antics on my blog? Yes

Did I secretly want to be Queen Latifah and MC Lyte growing up? Yes.

Kicking off the challenge: I embarked on what I am calling, Creative Sunday.

Challenge: Given a random theme, locate a beat, write lyrics, record the song, play babe the track. Here, is the 5 step breakdown.

 Babe provides me the theme. “Do the right thing”.

 I look for a beat. Where the heck do I find beats? I ended up on YouTube. Took me about 20 minuets to locate an instrumental.

*First break came after locating the beat.

 I start writing the rhyme. It took about 30 minutes including breaks.

*Forced to take about 2 breaks during this process.

Record the track. This was a fun process. I didn’t have a great sense of what I was doing, but it didn’t stop me. It’s important to note, I had a grin on my face the entire time.

* Several long breaks were taken during this process. (Being forced to take breaks while in fun moments can lead to frustration. I am learning to anticipate breaks in any venture I partake in which now minimizes the frustration. I am now starting to see breaks as part of the process.)

Play track the babe.

I was so nervous to play babe the track! Why was I so nervous? The track was never going to be heard by anyone, so who cares. This was just supposed to be a fun distraction. I guess everyone fears rejection on some level. As I was playing babe the track, various reactions formed on his face. Guess he didn’t know what to expect. He reacted like a proud parent, and it was just the reaction I needed. He was very supportive and suggested I share it on the blog. I figured, what the heck. The purpose of creative sundays is to show the importance of having fun regardless of limitations and participating in random moments that bring unexpected joy!

Happy Listening. And cheers to creative Sundays!

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: Do The Right Thing 2.0

Much love,
Marissa

Instrumental credit: M-Phazes – All 4 Hip Hop ( Instrumental )

Copyright Disclaimer: I am considering this venture an educational process. I learned a ton. There will be no sale or distribution. I am just a chronically disabled gal keeping positively distracted.

Lyrics: Do the right thing

This rhyme was birthed from a random moment. Shout out to babe
Tonight, slither up to the mic, rattle snake
Believe in the promise of a sealed hand shake
Let me take you back, to that dark cold place
Morality swallowed up between time and space
No time to contemplate or call on home grow faith
The spirit of the moment shook you like a earthquake

Time to be alone, this moment not home grown
Flashlights in the car, your mind about to be blown
Handcuffed, spread out on car, your locked down
Silence deafening when it’s the only sound.

It’s never easy to simply do the right thing
Remember what happened to radio raheem
In a choke hold facing 5-10
Leaving another generation of fatherless men
Seems senseless a life without a beginning or end.

(vocal)
Its never easy
it’s never easy

it’s never easy
never easy

never easy
never easy
never easy

Switch back to the second you change your fate
Filled with rage and anger you could hardly see straight
It took years to build up this ignorant rage
Living life through the bars of a rattled cage

Jury assembled of 12 angry white men
Save money on this trail we know where it’s headin
Cinematic drama played out in black in white
American justice don’t go out without a fight

You jump up, they scream, it’s a prosecutors dream
Max sentence handed down to the legal defense team
Walked out the courtroom your family cries
Choices and consequences laid to your demise
Sitting in a cell means time to mend
Future generations will be lead to stronger men
Time will be served left rattled and unnerved
Courage rebuilds when you hit that right nerve

(Vocal)
Its never easy
never easy
Its never easy
never easy

It’s never easy
never easy

Listen carefully as I will leave you with this
There is a thin line between sorrow and bliss
Next time you think of loosing the moral code
Think back on what you’ve already been told
Patience is virtue leading to the promise land
Shortcuts deter you from that master plan
You are birthed from the father of everything
Your purpose will be revealed when you do the right thing!

Vestibular Health Tip: Ice Pack

Dizziness, nausea, head fog, headache, are just some of the symptoms I battle daily. For many vestibular disorder sufferers, these symptoms are accepted as part of our normal daily experience. My vestibular rehabilitation therapist (VRT) has introduced me to cold packs. When my symptoms become unbearable during therapy exercises, we break and apply an ice pack to the back of my neck. We wait for the symptoms to subside and then we resume the exercise. The ice pack has a calming effect. It gives me a sense of control. It is an opportunity to regroup and a reminder to not continue to push myself beyond limits. It allows me to take the time I need and then resume activity.

My VRT therapist has encouraged me to use the ice pack as part of my daily regimen. I picked up this Bed Buddy hot/cold pack at the local drug store.

Marissa rocking her ice pack

 

Advantages:

It works!

It’s reusable.

The material is soft and not irritating on the skin.

 

 Disadvantages:

Doesn’t stay cold very long.

It’s a bit heavy.

 

 

Please share the cold pack that is getting you through! I would love to check out your suggestions.

p.s. If you have any hair conditioner recommendations, please add them to the comments below!:) My hair is crazy these days.

* Note: I am not advocating ice pack use for every vestibular patient.  Please consult with your doctor or VRT specialist and see if an ice pack would help with your current treatment and symptom reduction plan.

 

Much love,
Marissa

Recording My Vestibular Rehabilitation Therapy Journey May Have Come To An End

I can’t stop, and I won’t stop? What happens when you are willing to share your journey, but others are reluctant? I got this crazy idea in my head ; I was going to record my vestibular rehabilitation journey, in hopes we may all learn from the experience. What I failed to realize before I promised to deliver:

1. I need to ask permission
2. I have no idea how to edit video
3. I can’t be in complete control of the video recording, because I am in therapy.

I often lead with ideas first, application second. I may need to rethink the way I approach project ideas.

I can overcome obstacles 2 and 3, however, convincing the physical therapy center to allow me to record this journey may become an obstruction of my goal.

I believe this PT center is the best at what they do. My PT therapist has won me over. She is all business, and together we will kick butt and take names.

If you believe capturing my vestibular rehabilitation journey, for the next three months, would be beneficial, please comment below. I will direct the owner of the PT center to your comments.

 

See brief video recap of VRT day 2, plus supplemental video

Continue reading

Video Blog: Vestibular Rehabilitation Therapy Day 1 and beyond

ATTENTION: If you suffer from a vestibular disorder or are sensitive to motion and movement, please note that this video is at times shaky. ( I am working on a solution)

I will be documenting my journey through Vestibular Rehabilitation Therapy. This video details day one. I end up running into the insurance machine but this time I prevail.

The focus of this visit was initial evaluation. The purpose of the visit was to provide history and set realistic expectations.

The goggles are part of the device called Videonystagmoscopy

“Videonystagmoscopy has been used to subjectively observe the responses of the vestibular system in a population of patients with vestibular deficits. The videonystagmoscopy device is made of one or two CCD cameras mounted on lightproof goggles, allowing a subjective observation of ocular movements on a video monitor. The eye movements, as well as the position of the head in space, can be recorded on videotape.”

As we reveal my defects we will gather a realistic expectation of what can be achieved through vestibular rehabilitation.

Much love,
Marissa