The Spin Sisters 1st annual Thanksgiving Turkey Dinner Giveaway-2014

turkey giveaway for folks living with chronic vertigo/dizziness

Chronic illness and the holidays don’t mix!

Heads up: The Spin Sisters are kicking off our 1st annual Thanksgiving Turkey Dinner Giveaway.

We realize some members within our community may not be able to participate in the busy Thanksgiving festivities due to the evil symptoms known as vertigo and dizziness! We also realize funds can be tight for those on a fixed income

If you live in the US and could use a delicious Thanksgiving dinner for two shipped to your home,  here is the entry form: http://unbouncepages.com/turkey-dinner-giveaway/

PS: If you find yourself in a position where you want to help ship more Thanksgiving dinners to members of our ommunity, awesome, you will find the donate link here: http://funds.gofundme.com/dashboard/turkeygiveawayyeah

PPS: The winner will be randomly chosen on Monday, November 17, 2014 @ noon (PST)

Much love,
Marissa & Jane
The Spin Sisters

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!

Vestibular Community Members Facing Homelessness?

Nobody likes moving back home with their folks. At least, not this gal. I NEVER thought I would be in my 30’s living with my in-laws (I’m blessed I have awesome in-laws). I’m learning my situation is not uncommon for a person living with chronic illness. Several folks I’ve met living with chronic vertigo or dizziness, find vertigo and work restrictions are career shattering.

adult living with chronic illness dealing with family

Photo credit: Northern Star

Homelessness is essentially caused by the inability of households to pay for housing.

The average monthly disability SSDI benefit in 2013 was $1,146.  That leaves a gross annual income of $13,752. It’s suggested that 30%* of your income goes toward housing and utilities, which allots $343.00 a month toward housing. I’m concerned many members of the vestibular community are being forced to live with family, friends, or may even become homeless! As I continue digging through rental housing data, my worst fears are being realized.

Fair market rental averages throughout US counties:

Oregon- Salem
Studio- $547
1 Bedroom- $578

Washington- Seattle-Bellevue
Studio- $771
1 Bedroom- $913

California- Los Angeles
Studio- $896
1 Bedroom- $1,083

Chicago-Joliet-Naperville
Studio – $727
1 Bedroom- $826

New York, NY
Studio- $1,163
1 Bedroom- $1,215

Affordable housing for members of our community should be a top priority.

The Center for Housing Policy and Enterprise Community Partners compiled a list of the positive impacts of affordable housing on health. Here are the top three I think are critical:

  1.  Homeownership may contribute to health improvements by fostering greater self-esteem, increased residential stability and an increased sense of security and control over one’s physical environment.
  2. Affordable housing may improve health outcomes by freeing up family resources for nutritious food and health care expenditures.
  3.  Stable, affordable housing may improve health outcomes for individuals with chronic illness and disabilities and seniors by providing a stable and efficient platform for the ongoing delivery of health care and other necessary services.

 

Is affordable housing even accessible? 

I currently live in Los Angeles County. The wait list for Section 8 housing has been closed since 2004 ( I could not confirm nor deny this. I was unable to reach anyone from the housing authority)! I was able to confirm that the city of Norwalk’s (suburban city in Los Angles County) Section 8 wait list has been closed since 2007.  If Norwalk Section 8 wait list miraculously opened up, and the average SSDI disability benefit recipient was granted a housing voucher, they still wouldn’t be able to afford a studio or 1 bedroom apartment! Proof of search results from LACounty website:

Your Search Found 0 Properties: (In Norwalk, Rent range $0 to $343 a month, Accepting Section 8 Vouchers)We’re sorry. No housing was found that matched your request. You may want to try a search with a different price range or a different locality.

SO…is affordable housing affordable? Obviously not. The next few months I will be exploring alternative ways to provide realistic affordable housing to vestibular members within our community. It’s my belief that living in a safe environment and having access to nutritious foods are the building blocks to developing a better quality of life.

Has chronic illness forced you into an uncertain housing situation? Share in the comments below.

Much love,
Marissa

“*Typically, not more than 30% of your gross income should be spent on rent including utilities [electric, gas, etc.]. This is the high-end of what you may be able to spend per month. Your personal financial status will determine the actual amount you may want to spend per month on rent. “

Sources:
http://www.huduser.org/
http://housing.lacounty.gov/index.html
http://www.ssa.gov/pressoffice/basicfact.htm
http://www.endhomelessness.org/library/entry/the-state-of-homelessness-2013
http://chispahousing.org/docs/The%20Positive%20Impacts%20of%20Affordable%20Housing%20on%20Health.pdf

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

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

Play

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

Santa feeling stressed- chronic illness and the holidays

December 18, 2013

Ready or not, the holidays are upon us!
Are you getting buried in tinsel?

We completely get it!
It’s gotta be better missing two front teeth than dealing with chronic illness and the holidays!

In this podcast, we talk how to tackle the holidays and discuss 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? | 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”…:

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!

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!