Podcast June 12-12-12 With Project Member Dale Lehn

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Are you STRUGGLING with acceptance? Dale opens up, sharing an honest and beautiful perspective on acceptance.

THANK YOU Dale for being open to taking this journey with me!

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Much love,
Marissa

Sitting There Feeling Unmotivated? Dale May Be Able To Lend You A Hand

In our family, I have always been the primary cook, UNTIL I found myself in a wheelchair

This months 12-12-12 project member Dale Lehn had to undergo a second spinal surgery that left him paralyzed. Dale returned home to the reality of living the remainder of his life in a wheelchair.

When I returned home from rehab facing a new life in a wheelchair, I soon realized I needed four hands. Two to maneuver my wheelchair and two to carry whatever was necessary.

Dale was perfecting a secret weaponDESIRE. He created a product that would allow him access to the joys of greater independence.

I am SO PROUD (and pumped) to share with you Dale’s product….My4Hands™

CHECK OUT Dale in action...

SO…what do you think? Fantastic isn’t it!

Some of the cool things Dale can do with My4Hands™

My4Hands came in handy when I went to see “Red” at the movie theater yesterday. I WAS ABLE to get my soda and popcorn and take it right into the theater. Past days, Carmel would have to carry everything. Not now…it’s easy.

I found another use for My4Hands. I went to a TGI Fridays for dinner. As you may know they have a salad buffet. Well, with My4Hands IT WAS EASY FOR ME to go through the buffet and pick and choose exactly what and how much I wanted.

OK… So how can you get your hands on this awesome product? First let me say this…

DALE PUTS A SMILE ON MY FACE!

You can purchase this lovely independence assistant over at Dale’s website BreakthrU Horizon LLC

Let’s show Dale some love! If you don’t personally need this product… put a smile on the face of a person that does.

Much love,
Marissa

P.S. Some think about doing and others do! Don’t you love to hear stories of people digging deep and producing?  SO pumped right now.

TOP 5 Chronic Pain Resources That Can Teach You A Thing Or Two About Chronic Pain

I wanted to share some FANTASTIC RESOURCES  stumbled across on the journey to understand chronic pain. SO blessed to have access to the internet!

In no particular order!

The amount of detail and resources available on these sites make every one of these sites  #1 in my humble opinion.

1.) The American Academy of Pain Medicine

I was really draw to the Patient Center. I found myself spending hours on this site going through general pain overview information.

AmericanAcademyofPainMedicine Screenshot

Website: http://www.painmed.org/
Facebook: http://www.facebook.com/pages/American-Academy-of-Pain-Medicine/82593146925

 

2.) American Chronic Pain Association

Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.

I appreciate ACPA’s commitment to awareness. I was able to purchase this months support t-shirt and bracelet via this site.

AmericanChronicPainAssociationWebsite Screenshot

Website: http://www.theacpa.org/
Facebook: http://www.facebook.com/pages/The-American-Chronic-Pain-Association/113362482021895

 

3.) Advanced Pain Management

This is a pain management group. What caught my attention was the section of website labeled

Patient resources>Pain awareness month.

You will find some interesting facts and information on pain awareness.

advanced-pain-management Screenshot

Website:http://www.apmhealth.com/
Twitter: @apmhealth 

*Please note I am not endorsing or suggesting their services. I stumbled upon this site doing my personal research for this month’s project.

 

4.) International Association for the Study Of Pain

The advocacy section of the site is fantastic. I learned a great deal about the pain associated with headaches form their fact sheets.

International Association for the Study of Pain  Screenshot

Website: http://www.iasp-pain.org/
Twitter: @IASPPAIN  

 

5.) PainAction

Intensive libraries covering back, migraine, cancer, neuropathic and arthritis pain. I was very impressed with a medication safety library. 

Screenshot of painaction website screenshot

Website: http://www.painaction.com/
Twitter: @pain_ACTION 

 

P.S. YES I realize… some of these sites are supported by pharmaceutical companies ( This seems to be the case with several large health information databases.)  There are still GEMS of information you can find. As my Gram would say… “Mija… pray for the gift of discernment.” 

Much love,
Marissa

Creative Sunday

Snow Cone

Image by bunchofpants

Theme: Snow Cone

Crushed ice turned into SUMMER DELIGHT
Cold, sweet treat, savor it with little bites
Enough artificial flavoring to make you jitter
If you don’t get your share you’re sure to be bitter (babe’s line!)
Bahama mama, Cherry, and Guava
Don’t forget the tropical Pina Colada!
Shaved, Hawaiian, Snowball, are the labels
Carnival, ballpark, vending truck, sales
The industrial revolution birthed new ventures
None quite like this savory, sweet, quencher

Much love,
Marissa

 

Building An Inclusive Web For All…WHOOP WHOOP

I believe technology is a tool that can tip the balances in how people produce and participate in society. Especially the internet with its far reach. However, these tools are not often built in a way that allows all users to equally participate.

Can I get an AMEN? Someone that actually speaks my language!

How often do you get a chance to complain (to someone outside your community… who actually cares?) about annoying blinking lights, flashing animations, optical illusions, and all the crazy visual disturbances on the web?

Hmmmm… NEVER!

Maybe you don’t have a vestibular issue (Thank God!), BUT you want to talk about the kick a** web applications that are allowing you to connect and access the web.

Accessibility evangelist Gregory Tarnoff  cares about your experiences on the web…GOOD or  BAD! 

Take him up on his offer and fill out this form

Have further questions? Hit Greg up:

Greg’s Twitter: @tashitachog

Greg’s Blog: http://tarnoff.info

Much love,
Marissa

P.S. When someone hands you the mic… USE IT!

 

Pain is a disease? Who woulda thunk it!

I’m a pediatrician and anesthesiologist so I put children to sleep for a living (insert laughing audience…hahahaha). And I’m an academic so I put audiences asleep for free…

Bah dum CHING! Who doesn’t appreciate a doctor with a sense a humor.

While combing through chronic pain content for this month’s 12-12-12 project, I stumbled upon an awesome YouTube video.

You gotta check out Elliot Krane’s Ted Talk: The Mystery Of Chronic Pain.

It’s 8 minutes, 30 seconds, of rapid fire knowledge, spreading optimistic hope for the future of chronic pain.

*Heads up vestibular crowd. Ted Talk intro has a rotating, flying all over the place, animation.

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.

Creative Sunday

Theme: Father’s Day

You didn’t clam up knowing your first child would be a girl
You treated me as precious metal, your beautiful baby pearl
We were close. There were no secrets
Thrifty ice-cream got me to confess your birthday present trinkets (My mom was bummed that I told my dad what his birthday presents were before revealed. All it took was the bribe of an ice-cream cone!)
A man not afraid to work hard
You reminded me our ancestors fought long and hard
Reduced calls out of the hall forced you to reevaluate
You took a job in another state, making sure your family had food on their plate
I was too young to show my gratitude
That didn’t change your patient attitude
Calm and cool was always your approach
You never addressed me with harsh words of reproach
After babe, the second person to believe my symptoms were real
You accepted me for who I am, and I have never had to appeal
Remember when I was waking up in the house at 2pm depressed?
I would cry, telling you how I felt down and oppressed
You would talk me out of those moments of unrest
I am so proud of you that you have given your life to God
I know you will find internal peace when life pulls out the firing squad!
You are now a grandfather, and a new generation of kids adore you
I get to see you interact from a different point-of-view
Thank you for teaching me that each generations goal should be to improve
I believe that previous generations are looking down on you and approve!

*I love you dad! Sorry I can’t participate with you today. I am with you in spirit.

Much love,
Marissa

“You look so good!” The Aftermath

If you are healthy and have a family member, friend, co-worker that has shared they are ill ( but deep down you question because they look 100% healthy in your eyes), please check out this video. I am happy to open up and share what I am calling “The Aftermath.”

Some alternatives to “You look so good!”

– I am so happy to see you today.

– I have really missed you.

-I love those earrings, necklace, shirt, etc.

-You look beautiful. (This feels vastly different than, “but you look so good!”)

-Thank you so much for being here.

Heads up! Try not to use the word, “but” in front of the words, “You look so good!” When I hear the word “but” my mind heads in all different directions. This is what I hear in my head.

-Are you really as sick as you say?

-You look “normal” to me.

-I don’t think this girl is as sick as she says she is.

You may be thinking to yourself. “That’s her issue. It’s something she needs to work out in her head.” I ask that you trust that when you are living with an invisible chronic illness you spend a great deal of time trying to convince people you are sick because you are constantly hearing phrases like, “but you look so good!”  My outward appearance doesn’t often reflect the internal turmoil.

The definition of the word “but”:

“Used to introduce something contrasting with what has already been mentioned.”

Sensitivity goes a long way. This is really a case where ” think before you speak” makes a world of difference to another person.

Hope this helps. :)

* Don’t hesitate to share alternatives to the words, “You look so good!”

Much love,
Marissa