Christmas Marathon Phone Meetings for Chronic Illness and Pain Sufferers

You may recall my time spent with June’s 12-12-12 project member Dale Lehn

Project member Dale

“I am a T-5 paraplegic and have been in a wheelchair since 2005. My paralysis is not due to an accident but from having a tumor growing inside my spinal cord.

“I soon found myself withdrawing from my family and friends.

The doctors said the only medication they could prescribe to “get rid of the pain” were narcotics based drugs. I wasn’t willing to go down this path. Over the course of several years, along with another man who had a similar issue with chronic pain we developed a way of living that gave us the tools to live a full and productive life even with chronic pain.”

Helping people learn to overcome the emotional debilitation and isolation of chronic pain and chronic illness is the fundamental work Chronic Pain Anonymous is doing.

Chronic Pain Anonymous logo

I have personally attended a few phone meetings through Chronic Pain Anonymous and found it extremely comforting. You become part of a fellowship that is supportive and most importantly understanding.

As I was going through my emails today, I came across the title… “Special Announcement – 4th Holiday Meeting

I opened the email to find a list of phone meetings that are going to be held on Christmas Day! A Christmas Marathon of Phone Meetings. A brilliant idea!

“Many people with chronic pain and chronic illness are home bound, either by choice or by medical need. During the holidays it is valuable for us to have an outlet to speak with others, especially those who understand what it is like to live with chronic illness or chronic pain.”

Isn’t that the truth! I spend the majority of my time at home. This is not by choice, but based on the limitations placed on me due to my medical condition. Lord willing, I am going to have the luxury of attending two holiday gatherings on Christmas Day. However, what if lived alone, a few hours away from my family? What if I lived by myself in another state? Most likely I would be spending the holidays alone!

I know first hand what living with a chronic illness can do to your mental health. I sympathize with how isolating a life of chronic illness creates. That is why I believe what Dale and Chronic Pain Anonymous are doing with the Christmas Marathon Phone Meetings is a blessing.

So here are the details of the email I received…

Holiday Phone Marathon

 Lutherville, MD… Chronic Pain Anonymous has announced a special phone marathon to take place on Christmas Day, December 25, 2012.

Here is the schedule for the day:

• The first meeting will begin at 1 PM EST to 2 PM EST. Fellowship to follow.

• Our regular Meeting is from 3 PM to 4 PM EST. Fellowship to follow

• Next meeting time will begin 5 PM to 6 PM EST. Fellowship to follow

• Last meeting time will begin 7 PM to 8 PM EST. Fellowship to follow

As we will know, many people with chronic pain and chronic illness are homebound. Either we are isolated by choice or by medical needs. During holidays it is valuable for us to have an outlet to speak with others, especially ones who understand what it is like to have our illness of chronic pain. The number to call is (213) 342-3090 and the access code is 1952435.

CPA has five regularly scheduled phone meetings, two Google Group internet meetings and 13 face-to-face meetings taking place in Canada and the United States. All current meetings can be found on our website.

Chronic Pain Anonymous is a Twelve Step fellowship of men and women who share their experience, strength and hope with each other so that they may solve their common problem and to help others recover from the disabling effects of chronic pain and chronic illness. The only requirement for membership in CPA is a desire to recover from the emotional, physical, and spiritual debilitation of chronic pain and chronic illness and a willingness to help others to do the same.

For more information, you are invited to learn about the program on the website: http://www.chronicpainanonymous.org. If you have any questions, contact Dale L. at dale@chronicpainanonymous.org or info@chronicpainanonymous.org

Much love,
Marissa

PS: Please promise me you will find fellowship on Christmas Day!  You don’t even have to speak if you don’t want to! Just listening in on the call will do you some good. Don’t hesitate to pick up the phone. The number to call is (213) 342-3090 and the access code is 1952435. If I could hug you, I WOULD!

Opening The Thankfulness Floodgates

"Thank You Computer Key" by Stuart Miles

Image: freedigitalphotos.net

Thankful to have a desire to share thanks once again! I was clouded by a negative health catastrophe that started a few years ago leaving me feeling far from thankful!

That has changed.

The cloud has lifted enough for me to see the blessings.

This year my family skipped over our traditional Thanksgiving day shout outs. We normally go around the table sharing what we are thankful for.

As difficult as it is for me to admit, for a few years there I HATED this tradition. I would smile and oblige, but deep down I was too bitter inside to feel genuinely thankful.

The last two years I have felt my heart soften. I was ready to express everything I was thankful for with pleasure.

However, this year we got caught up in movie title charades. I didn’t get a change to let thankfulness spill over.

(Your girl was asked to act out scenes from Platoon and Gremlins. WHAT? Sorry team for not earning you any points!)

Each person that has entered into my life over these last few years has been instrumental in opening up the floodgates of thanks!

It is with a full AND thankful heart that I drop a few shouts outs………….

Babe! You are the truth. You didn’t need to recite the vow “in sickness and in health” in order to honor it daily.

My entire family! Love and blessings.

Thanks Noreen for your unwavering friendship. You are one of the ONLY friends pre-vestibular that get’s me!

Thanks to Blake Watson for being a patient teacher.

The 12-12-12 project members that all have been instrumental in my growth.

Theresa for inviting me to her dizzy group, Dizzy World Cafe.

Every member of the Dizzy World Cafe .

My VRT therapist.

My entire medical dream team.

VEDA for asking me to share my story. (Kerrie, you are THE BEST!)

Disability Horizons for allowing Blake and I to collaborate on an article.

Rhiann for her sweet spirit.

Jeanne for trying to school me on bioidenticals.

Tom Hogle for caring about what I have to say.

Jeffrey Zeldman for reminding me that I still have a voice.

Kim  for allowing me to be part of her journey.

Sarah G. for allowing me to express my vulnerable moments.

Curly Jane for being a ray of sunshine!

Veronica for teaching me thoughtfulness.

EVERY person that has sent me a coding book or video.

EVERY person that has emailed me and has been open to sharing their story with me.

EVERY person that has been kind or gracious toward me.

EVERY person that has not been kind or gracious toward me. ( Yes, they have been an important part of opening my thankful floodgates.)

Much love,
Marissa

P.S. Don’t beat yourself up if you feel closed off and not blessed. EVERY person, AND experience, good or bad, is going to chip away at the wall you have put up. Your thankfulness floodgates will open once again!

Hidden Disability and Voting Options

Is a hidden disability or chronic illness creating a voting barrier for you this election?

It’s 4 years later, and in 3 DAYS we will have the opportunity to vote in the United States 2012 presidential election.

US Presidential 2012 Election

image: freedigitalphotos.net

According to the Rutgers school of management and labor relations website fact sheet.

In 2008 131.1 million people voted, and of that population, 14.7 million people had disabilities.

The voter turnout rate of people with disabilities was 7 percentage points lower than that of people without disabilities.

It doesn’t appear that people with hidden disabilities or chronic illness were counted in those statistics.

Living with a hidden disability I am concerned at the possibility that people with hidden disabilities are not included in these stats.

Allow me to share my 2008 election story…

It was an awkward experience.

I headed to the polls in the evening when the visibility was terrible (bad idea!).

I waited in the lengthy line, and when my turn was up I was standing at the voting booth feeling yucky!

I looked over at the disability and senior section and saw accessible tables.

I walked over to one of the election poll reps and asked if I could use one of the accessible tables. She said something along the lines….

“This is for seniors and the disabled.”

I quickly froze and said, “I have a hidden disability”.

She paused. I blurted out,” I have a balance disorder”.

She looked puzzled, and said “OK,” and let me sit and vote.

I DON’T BELIEVE she was being malicious or obstructive. She was protecting those accessible tables for the disabled and seniors.

People find it to be difficult believing I have a disability. There are no visible indicators. (At the time, I was not wearing prism glasses or using a walking stick.)

The simplicity of waiting in long lines and voting can pose difficulty for someone with a vestibular disorder.

People with vestibular disorders are dealing with vertigo, dizziness, imbalance, spatial disorientation, vision disturbances and a myriad of other symptoms.

I didn’t want to deal with the awkward experience again this election year, so I made sure to vote by mail.

My Vote By Mail Pamphlet

However, I started thinking of ALL THE FOLKS that are reluctant or will not attempt to vote because of chronic illness or hidden disabilities.

I reached out to a few sources and received a response from the L.A. County Registrar-Recorder/County Clerks office.

I want to THANK THEM for their willingness to answer my questions.

Hope you find this information helpful…

If you have a hidden disability, what is the best way to communicate to the polling place that you need to use an accessible table?

We understand that disclosing a disability is a personal decision and some people may not feel comfortable making others aware of it.  However, certain level of disclosure is necessary to receive a reasonable accommodation especially if the disability cannot be directly inferred from observation.

When and if voters choose to inform the poll worker that they have a disability, they should do it in a way that is comfortable for them. Some people may feel comfortable with talking openly to the poll worker to request special accommodations and explaining that they have a hidden disability.  Voters do not need to be specific on the type of disability they have but they should be clear and specific on the type of accommodation they need. On the other hand, some people may not feel comfortable disclosing in a public setting that they need a special accommodation due to a disability. In such case, voters can hand out a brief written message to the poll worker where they explain that they have a hidden disability and request that they are provided with special accommodations (e.g. using a wheelchair accessible voting booth, a magnifier, the audio ballot booth, etc.).

 

Is it required that there be an accessible table available to seniors and the disabled regardless of state and county?

We provide accessible voting booths and an audio ballot booth, as well as a number of assistive devices to serve voters with a range of and varying degrees of disabilities. We also have curbside voting.  Poll workers will do their best to accommodate voters’ needs when they identify that a special accommodation is needed or as soon as the request is made to them if the disability is not visible.

We try to provide a private and independent voter experience for all voters.  We do not provide tables…we provide accessible booths.  Tables do not provide a private voting experience for voters.  For these voters we have curbside voting.

* I was given an opportunity to sit and vote in 2008, but, based on this response this may not be the “standard” option. I believe I may have been using the wheelchair accessible booth and was given a chair to sit in.

Not everyone with a disability is issued a disability parking sticker. Will the hidden disability voters still be allowed to pull up to the front for curb side voting without a disability parking sticker?

Any voter who is unable to enter the polling place can request to vote curb side.  You are not required to have a disability license plate.

 

Can you explain how curb side voting works?

When the voters arrive to their designated precinct, they may inform election officials of their need to use curbside voting by pressing the button on the curbside call box. An election official (i.e. poll worker or inspector) will respond to the request for assistance by carrying a ballot outside the polling place and providing it to the voter. The voter is then able to make his or her choices in the comfort of his or her vehicle.

Is there a national phone number that the individual can call if they run into disability discrimination and they are not permitted to sit and vote because they “don’t look” disabled?

I was not provided a national number, however,  I was given local numbers.

I live in California and here are the numbers for Disability Rights California

North California: 1-888-569-7955

Southern California: 1-888-733-7565

Before or after election day call: 1-800-776-5746

If you DO NOT LIVE in California, and need to report a problem call 1-866-OUR-VOTE

You can find more information via the  866ourvote website.

Final Thoughts:

Find out how your state handles pre-election day voting. In the future I would suggest voting early.

If, you HAVE NOT taken advantage of pre-election day voting options don’t be discouraged.  Take advantage of curb side voting.

Helpful links provided by the L.A. County Registrar-Recorder/County Clerks office:

What is the law

Assisted registration

Is Your Poll Accessible? On-line Feedback Form

Accessible Voting Options

Whom to Contact

Election Guide for Voters with Specific Needs

Additional links I suggest you check out (national information)

Election Protection: You Have The Right To Vote

Register To Vote And Request Your Ballot Using The Form Your State Prefers

Rutgers- Disability and Voter Turn Out Facts

Disability Vote Project (I was unable to get a response, but the information on the site is solid)

National Disability Rights Network

Much love,
Marissa

PS: Voting should be an equal playing field, and regardless of ability we deserve the opportunity to exercise our right to vote!

I STILL Got IT! On My Walk Today I Was Actually Hit On

Let me break down the scenario:

I was about 1/2 way through my walk…

I smiled and waved at a gentleman that is part of my walking path landscape. He yelled for me to come over. I happily walked across the street.

He greeted me with a smile..”You want to stop for a beer, soda or maybe a water?”

I started beaming. I responded graciously with… “Oh no thank you, I gotta get this walk in.”

He says… “What’s your name?” I proudly respond, “Marissa”.

He leans in…”What was that?”  He is now holding my hand tightly!

“MARISSA” I respond with conviction.

He loudly proclaims…”You are welcome to come over ANYTIME! Drop on by and we will share a beer or soda.”

My response was giddy…”Thank you so much for the offer. I will be sure to bring my fiance on by. You will really love him!”

HIS EXPRESSION SAID IT ALL…

“No… I don’t want to meet him, I just want to see you again.” I smiled and said… “I better be on my way.”  (He is still holding my hand at this point)

He leans in closer.. “Tell me your name one more time?” … I slightly chuckle and say…

“Marissa”. He smiles and let’s my hand go. “Ok Marissa, see you around! The invitation is ALWAYS open!”

I admit I walked away with a little pep in my step!

I am PUMPED. I still GOT IT regardless of my walking stick and taped up glasses! WHOOP WHOOP.

Much love,
Marissa

P.S. (SHHHHhhhhhhhhhh… don’t tell anyone that he was about 85 years young! )

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

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!

 

“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

Another Chronic Condition?

Doctor And Stethoscope

Image: Suat Eman

Approximately 4-5 years ago a doctor suggested my lab results indicated Hashimoto’s thyroiditis (immune system attacks the thyroid tissue). Another doctor was not convinced and was unable to concur. Without additional information I mentally did not claim the condition. Differing opinions usually leads to additional blood work down the road. My new GP is keeping an eye on my thyroid levels. As my TPO antibodies continue to rise, hypothyroidism (Thyroid doesn’t make enough T4 and T3 hormones), doesn’t seem out of the question. It’s just a waiting game. Crap, I don’t want to have to take a synthetic hormone for the rest of my life. Sigh. Mentally I am forced to focus on one life altering chronic illness, I need the rest of my health to stay on track!

* My results:
7/28/11 Thyroid Peroxidase (tpo) Ab 38
6/5/12 Thyroid Peroxidase (tpo) Ab 54

If you have thyroid issues, please reach out. Are you on a thyroid diet? Has synthetic hormone helped minimize your symptoms. I am going to need guidance on this one. It seems like the thyroid treatment controversy is hot and heavy!

Much love,
Marissa

*TPO Normal Range 0-34

Raise5: Screw Business As Usual. Follow Up

I reached out last month asking you to consider voting for the creative, fundraising, platform known as Raise5.  Raise5 was invited to compete in the Virgin Unite’s contest- ‘Screw Business As Usual’.

Guess what? Raise5 won!

Did you take the time to vote for Raise5? I am sending you a virtual High5(deep down I think I have always wanted to say that)!

Be sure to check out the awesome #SBAU Raise5 entry video!

*Heads up vestibular community,  video contains rotational movement.

And don’t forget to turn your talents into donations!

Much love,
Marissa

Need a stylish way to carry your medication?

I want you to stop reading this post and go grab your pillbox, pill bag, prescription bottles, ziplock bag, trash bag; you get my drift ! This months May 12-12-12 project member Sara Gorman has come up with a beautiful alternative to clunky, plastic, pill boxes, and bottles.

Many of you, just like I used to be, are beholden to a clunky, plastic pill box to carry your pills.  And if you’re not (yet!), you know someone who is. But couldn’t there be a better way to organize and tote pills? At least, a more fashionable way that doesn’t include plastic? Most importantly, couldn’t there be an organizer that doesn’t scream “I’m sick” when you pull it out to use it?

I want you to toss those dingy, boring, pill boxes and containers aside and start rocking a beautiful Pillfold! What’s a Pillfold?

Sara Gorman pillfold

The Pillfold is a fun, fashionable new way to carry your vitamins and medication.

I understand those prescription bottles have pertinent information on them and you are not ready to throw them away. No worries, Sarah offers a Pillpouch.

Sara Gorman PillPouch

The Pillpouch makes toting and storing your medicine bottles simple and easy. Featuring six elastic bands and a special-drawstring design, this cute little number is just the thing to keep your prescription bottles organized, stowed, and at the ready.

Did I mention:

5% of every Pillbag sold goes to a Lupus charity. Join our quest to raise $1,000,000!

Let’s support Sara by heading over to her website and support her project:  Bringing a dose of style™

Much love,
Marissa