10 Easy Ways to Raise More Awareness during: CRPS, RSD, Nervember, November

Hi friends!
November first kicks off Color the World Orange month, otherwise known as CRPS/RSD Awareness Month!

So much awareness has been raised over the years for our cause. It’s incredible how far we have come when I think of the increase in education, research, social awareness, physician availability, and treatment options which have developed over the years, it makes me proud to be among my fellow CRPS advocates and pain “warriors”. The CRPS community has grown tremendously in the last 14 years compared to where it used to be.

I can’t imagine living in the same body and having no online resources, no diagnosis, and no community of fellow survivors. Without those advocates who went before us, people would still be facing this unimaginable pain alone.

Sometimes I get discouraged by the challenges our community faces, but then I remember what these awareness campaigns have accomplished over the years, and I’m reminded of the importance every voice has. We make strides by working together each November.

Everyone’s voice matters. Every single story matters. Your story is unique, and can change lives.

During awareness months like Color the World Orange, sharing your story is amplified by the thousands of people sharing theirs simultaneously.

Here are 10 Tips for raising even more awareness in every post you share this month:

1. Write out “Complex Regional Pain Syndrome”.

Many don’t know what CRPS or RSD stands for, much less what it means. We often take for granted that our friends and family know that it’s an incurable, degenerative neurological disease, but most people can’t differentiate one chronic pain condition from another. NERVEmber is the perfect opportunity to educate those in your life on your condition.

2. Make your awareness posts public.

This way anyone can easily share your posts and support you!

3. Make it personal.

Your friends know and love you, and will remember more about CRPS in the long run if you share details and images from your own personal journey.

4. Make every post count!

Even when you’re reposting a great awareness poster or video from another page, first take a moment to add your own personal caption. Your friends will be more likely to stop and read your words, instead of scroll past.

5. Have a mission.

What is your personal awareness goal this month? Whether you choose fundraising, sharing your personal story, medical facts, treatment options, or petitioning for the opioid crisis/chronic pain epidemic, if you choose one focused approach on social media, you can make a bigger impact in a shorter period of time.

6. Use hashtags and tags.

For example, adding #colortheworldorange to your posts can help others in the CRPS/RSD community find you.

Tagging a group of friends to a post is another great way to connect to your community during awareness month!

7. Participate in awareness events.

Monday, November 5th, 2018 is Color the World Orange Day, when we ask our friends, family, and communities to wear orange and share their photos to social media!

Between Instagram, Twitter, Facebook, Pinterest, Tumblr, and the blogging communities, there are so many cute events and ways to get involved this month.

Let us know what events you’re getting into this November.

8. Don’t lose momentum.

Try to take advantage of the entire month of November. Have fun, but pace yourself, and make self-care a priority so you can participate throughout the full CRPS/RSD awareness month.

9. Be an ambassador.

If you have the ability to get online and share posters, or tweet status updates, think of yourself as a representative for those who cannot. You are advocating for people in our community who don’t have a voice, for those whose fights have come to an end, and for all of the individuals who might be diagnosed in the future.

Awareness campaigns today lead to future recognition of a rare disease, early diagnosis, early intervention, hope of treatment options, more funding, more education, more critical research, and we hope with more awareness, this unbearable suffering will be cured.

10. You are brave!

Don’t forget how courageously you live with your pain, and overcome every-day obstacles that no one even knows about.

It can be difficult to be vulnerable and discuss our pain, especially when we are used to comforting others so they can feel good that we are ok (even when we aren’t).

You are not complaining when you share your reality. You are not a burden just because you are burdened by pain. Your friends share their lives; there is no shame in sharing this important aspect of yours also.

I hope you have a fabulous NERVEmber! I’ll be looking for you in your orange 😊

>Here and >here you can find original awareness posters to share. And here are more articles about CRPS with personal stories by survivors. Or, see the “Categories” drop-down menu to the right.

What are your tips for raising awareness in your daily (IRL) life?

Claire Wineland Quotes, remembering respected health advocate

The title of this article should actually say that Claire Wineland was a “Life Advocate.” She was the epitome of MLK’s quote, “It doesn’t matter how long you live, but how well you do it.”

I didn’t know Claire personally, but like so many of her followers on social media, those who read her book or had the pleasure of attending one of her talks in person, she felt like a friend. She had a talent for drawing people in, then she would reveal her truths to us.

Like a teenage philosopher, the Cystic Fibrosis fighter pondered mortality, how to live boldly in spite of limitations, and the depth of the human spirit from her social media pages and youtube channel. She said that her two favorite hobbies were to think and talk, so she put her best gifts to good use!

“I don’t agree to do these talks to tell you how to have a happy life. Life is hard. It’s painful. You can suffer. You can experience what it’s like to be a human being with all of the messy gross emotions that come with it, and still make a life that you are very very proud of.”

Sometimes Claire shared her thought provoking videos from her apartment, or laying in a hospital bed; we once even found her clothed in a hot bathtub!

That was Claire Wineland. She was spunky and full of spirit, never ceasing to surprise or defy expectations!

When she spoke, her wisdom and maturity made you forget that she was only in her late teens– just coming into her early 20’s.

As a young adult, she became a speaker, author, and founder of a non-profit for kids with her condition Cystic Fibrosis called Claire’s Place Foundation. Going on speaking engagements (when she was well enough), afforded her opportunities to see more of the world, to travel, to make friends, stay in hotels instead of hospitals, and gave her new life experiences which she cherished.

Through her professionalism in health activism and being in the public eye, Claire Wineland helped make the work of health advocacy a more respected job title.

She took a strong stance on addressing the way the world infantalizes young people living with illness, something she understood all too well growing up with CF.

She was a rare soul as much as her perspective on life was unique. At times controversial, Claire shared that happiness itself wasn’t the key to life. Instead, she maintained that living out our purpose through service is where we find deeper meaning.

In one of her last videos, Claire spoke passionately about her charity she created she referred to as her “baby”. She spoke on the undenianble worth she believed everyone has regardless of limitations. This had been her battlecry throughout her career, which made her beloved to people living with disabilities of all types.

Her comments section always exploded with thoughtful discussions, as she had a way of eliciting meaningful conversations. People would engage one another on life, death, happiness, and pondering the true meaning of existence.

Claire’s following consists of terminally ill individuals, healthy young people, adults, Cystic Fibrosis fighters, and people with long term chronic diseases like myself. (Even celebrities from Bernie Sanders to Anne Hathaway are part of Claire’s fan club.) You can imagine the conversations she sparked, and the perspectives she challenged!

Claire had fought to outlive her life expectancy, and she overcame near-death several times. Because of her experiences, she believed in demystifying mortality, and used her prognosis to wake us up into living our own lives more fruitfully.

In one of the last videos she shared, she plead for support to get a lung transplant- something she once vowed she would never agree to. Though she belly-laughed and joked through her former talks, in this one, her tears flowed. She shared the possibilities and dreams she saw for herself if the transplant was a success. For the first time in her life, she was looking forward to her future. An enormous outpouring of both financial and heartfelt support followed from her fans.

More than enough funding was donated to cover costs of her medical care. A video of Claire’s genuine appreciation followed in return. She expressed her humility and surprise that so many contributed and reached out to encourage her. The overflow of funds were given to Claire’s Cystic Fibrosis Foundation.

Because of her online friends, Claire went into her surgery overjoyed with hope, gratitude, and feeling love from hundreds of thousands worldwide.

The people she had inspired and imparted her wisdom to for years were able to send her off to her surgery with well wishes and a flooding of encouragement.

She is said to have suffered a stroke on September 2, 2018. Claire was put into a medically induced coma, and taken off of life support one week post-operation. Her parents say she passed peacefully.

She was 21 years old.

Sincere condolences to the Wineland family. As a long time chronic illness sufferer, Claire touched my life and heart as she did for so many others.

I leave you with my favorite video of Claire’s, one of her most powerful TedX talks. I hope you will watch and share her message… In loving memory of Claire.

Imaginative magic…..

I’m so pleased to share a favorite blog from a friend and fellow chronic pain warrior, “Pain in the Beck.” In the below post, she did me the honor of writing about how we first “met” online ♡ To me, she has been a butterfly emerging from the shell that illness couldn’t hold her in.
Follow PainintheBeck blog as she writes about her life in NYC as an artist, a student, a chronic illness warrior, and shares her adventures with family. You will be rooting for her, and you’ll be inspired to root more and more for yourself because of her.

(Read article in full at the link below.) Thank you for reading and following.

Every day is is Hope Day here at a Body of Hope blog, but every Wednesday is #HopeDay all around the web. Spread that good stuff around 🙂

painintheBECK

Hello friends!

I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.

We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.

My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills…

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Discussing Chronic Illness & Disability Globally

Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it SHUT DOWN! It got ugly in here, but thankfully, it wasn’t out for long.

Just the short spell of overheating, and flaring in turn gave me a better appreciation for what people have to bear all over the world. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same privileges.

That’s something I’ve been considering more and more in regard to health.

Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.

I’ve had the incredible opportunity to “meet” individuals from all over the world, in many different circumstances throughout the disabled online community. It’s inspiring how strong people can be, beating the odds every single day.

So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.

For anyone else in this country, my circumstances are quite the opposite of what anyone would hope for.
But for people in so many other parts of the world, how privileged might my life seem to them from the outside looking in?
I have running water, new clean clothing, a comfortable bed, air conditioning, food to eat every single day, and electricity for countless electronics and assistive devices. I have people who love me, ready access to medication and health care specialists close to home. Most of the things I need are only things I want, and what most others simply live without.
In other areas of the world, or in another time in history, I wouldn’t have chronic illness- I would instead have a terminal illness.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.

It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.

In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.

Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.

Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.

I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.

A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.

Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.

I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.

“Hardship is but for a night, but joy comes in the morning.” That promise of an eternity of joy and healing gives me hope to continue facing each day. I would have lost this battle long ago had it not been for His strength.

I’m not the young woman I was 13 years ago- I’ve been changed by this journey.

There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.

I know having multiple rare diseases isn’t a life anyone anywhere would wish for.

Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.

And so is yours.

*******

Below is more information about our disabled brothers and sisters around the globe.

-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.

-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)

-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.

Concerning statistics.

  • 70 million people need a wheelchair, but only 10% have access to one
  • 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
  • 93 million children worldwide have moderate or severe disability

Mental Illnesses are on the rise worldwide.

  • Depression: 300 million people
  • Bipolar affective disorder: 60 million
  • Schizophrenia & other psychotic disorders: 21 million

Chronic Illness has become a worldwide epidemic.

  • 300 million people live with Rare Diseases (1/2 are children).
  • Chronic Pain effects 1.5 Billion people around the world.
  • It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).

See World Health Organization and NORD (National Organization for Rare Diseases) to read more.

To Survivors of Depression, Chronic Illness, Mental Illness, & Trauma

*trigger warning*

If you’ve been hit hard by suicides in the news this week, you are not alone. It’s crushing to learn that these two incredible artists have chosen to end their lives.

I don’t doubt that Anthony Bourdain was influenced by the passing of Kate Spade’s suicide just days prior. Kade Spade was influenced by Robin William’s death, according to Kate’s sister. Now, while it’s a common topic of conversation, address these issues with your friends and family so that together we can help end this pattern, spread awareness, shed light on issues that most often stay buried in darkness, and forever stop people from calling suicide “selfish” ever again.
Sharing our prayers and thoughts for their families and loved ones now.

Sometimes life feels impossible to carry on. Sometimes you feel there are NO OTHER logical options. Sometimes suffering is our only reality, and there appears to be no end in sight.

In depression or in suffering, your feelings lie to you until your own inner compass is off course. When your own thoughts and emotions are steering you into a storm, lean on facts as your anchor instead, or the lies of depression and pain can sweep you away.

Facts:
-Things will change even when your mind tells you that nothing will ever be different.
-YOU MATTER, even if your thoughts tell you that you’re worthless right now.
-The world is BETTER OFF because you’re in it .
-Your life has purpose, even if you can’t always clearly see what that meaning is.
-You are lovable.
-You are loving.
-You are an important influence on people’s lives even if that doesn’t feel real to you today.
-You are MEANT TO BE here.

Depression can decieve you until you can’t even trust your own emotions. What might make sense to you one day, can be like the thoughts of a stranger on another day.
Depression isn’t only caused by mental illness, it can be caused by grief, by loss, by chronic pain, by trauma, by changes in your health, by a vitamin deficiency, by evironmental changes, or even small changes in your diet.
It can be a slow spiral, and sometimes you may not realize you’re living with depression until your brain has been lying to you for so long that one day you look around and feel trapped in your own story.
If you believe you might be losing control of your life, and worthlessness is heavy on your shoulders, please make an appointment to talk to your doctor asap.

Together you can create a plan to help you get on a path BACK TO YOURSELF.

*Your life is worth fighting for.

To talk to someone immediately, call your state’s Behavioral Health Department hotline to speak with a professional therapist day or night.

There is always hope, that’s a fact ❤

I took a free online class… here’s how it went

I’m looking at free online courses today.

I participated in a course last year. It was formatted much like social media with elements of video as well as articles. Two professors from fancy pants universities oversaw the course. There was no formal grade, but you do receive a certificate of completion. Unless you are me.

Straight up, I did not do well, lol.

It was an Introduction to Fiction Writing course, which I thought I would do ok at (cocky much?), but it required more writing than I could personally muster, and I just couldn’t keep up. Partly because my brain is so sluggish, but in large part, because I realized, I was not in a class of my “peers”.

I assumed most of the students would be at an INTRODUCTION to fiction stage– hahahaha! no. In fact, most were just tidying up their novels before publishing, and every fiction writing assignment was an excerpt from their well-developed books. Bitter? Do I sound bitter? I’m not bitter, I’m getting even. I’m going to show that free, not-for-college-credit, online university who they’re messing with.

Seriously though, it was a good experience, and I did enjoy myself. This ol’ brain needs some regular upkeep before it completely turns to jello pudding. (And I’m not kidding.)

So I’m looking into trying another course. Brave, I know…I am so brave.
There are several starting in the next 2 weeks from Future Learn. Since I can’t go on a sexy vacation to Cancun, I’m doing the next best thing– Summer School! Woop woop🎉

Nerd Alert.

For my fellow nerds, I’m including links to a few interesting classes; mind you, there are many more to browse.

P.S., this is not an advertisement. (I suppose the spoiler was me complaining over the last course I took 🤔)

Mindfulness for Wellbeing

Radical Spirituality: The Quakers

Exploring the Oceans

Reducing Child Poverty and Inequality around the World

Assisting Disabled Individuals

Researching: How to Write Literature Reviews

The Science of Nutrition

Good Brain, Bad Brain

Nearly 200+ more options here

They’re usually around 3 hours per week, but that depends on how much time you want spend chit chatting in the class forums. Each class overview lists the weekly time estimation. You can also upgrade and pay for the class, which gives you fabulous added features…like being forced to take pop quizzes and writing book reports. (Just kidding, I don’t actually know.)

In college, I took several online classes which I loved. They tend to have so many added elements which traditional courses don’t offer, and as a human being, I prefer setting my own schedule. These free courses are similar, but without the extensive assignments or exams.

I figure, you can just read a book on the subject. Orrrrr… you can instead do a course for a few weeks and learn from several books as well as hear expert opinions, watch video footage, and discuss the topic with other thoughtful adults. Door number 2 please!

Plus- I’ll never read the book, so there’s that…

Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS

Hello everyone!

Today we have a special treat as Pat Guerre, co-founder of the Kneading Hope Organization has agreed to an interview. Pat recently returned from Washington DC where he spent Rare Disease Week. We at abodyofhope blog are so grateful that Pat Guerre is opening up about his Rare Disease Day experiences, his art, and non-profit work.

I was introduced to Pat through his incredible wife, Gina Raring-Guerre, who many reading may already know. She was a member of my support group Living with RSD, and she has gone on to become a strong voice in the CRPS, Scleroderma, and Rare disease community, along with her partner and husband, Pat. I can’t wait for you to hear their story!

***

Hello Pat! Welcome! It’s a pleasure to have you joining us, and filling us in on your work and latest trip to Washington.


1. Firstly, what is Kneading Hope?

Pat: I suppose I should go back a bit. In 2013, my wife Gina, who suffers from both RSD/CRPS and Scleroderma was down to a weight only someone on their death bed should be, and her doctors confirmed exactly that. Being an artist, I began painting 12″ X 12″ hearts to fill her room and share my love with her. They prescribed her medications we couldn’t afford, and her insurance would not cover them. That’s when our fundraising art project was born called “10,000 Hearts for Gina”.

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In 2016, I submitted a work to Rare Disease Art and was awarded an Artistic Merit Award. I flew to Washington DC to be part of the reception, and it changed my life.

After my trip, I decided to participate in almost all of the events that the EveryLife Foundation had arranged for the week. I listened and learned about the rare disease community and all of their concerns. I still think about those who may or may not still be with us today. I remember parents so determined, yet afraid, trying to keep a brave face to hide their pain. It touched me completely. When we walked Capital Hill, a patient I was walking with started talking to me about patients like herself, the caregivers, and why we were all there together.

I got home from that trip changed.

I decided that after years of staying home and sharing my artwork with a few, I could do more. So with my wife Gina, and a few friends we started Kneading Hope to try and reach out. We don’t target the advocacy end of things, but the patients, caregivers, and families of people with rare diseases.

We have three main goals. Number one, awareness, and funding of other issues, through the 10,000 Hearts for Gina project, of RSD/CRPS and Scleroderma, as well as other rare diseases. Secondly, using art to raise awareness of all rare diseases through an online presence and art shows. And third, figuring out how to give caregivers some kind of respite.

We are new, we are learning, and we will continue, dedicated in this work. We also send parts of the 10,000 Hearts for Gina project out to patients, caregivers, and medical facilities and their staff to make people aware. Awareness is where it begins.

 

 

 

 

 

 

 

 

 

 

2. How did you get involved with Kneading Hope and advocacy?

I started Kneading Hope because I went to DC to show my art. There were so many people advocating and I was inspired by their dedication. I decided to go into the community based nonprofit. We didn’t start Kneading Hope as an advocacy group, we do however believe that knowing what’s happening in that realm, can only help educate, and let people know there is hope out there. 

We feel that Kneading Hope’s purpose as well as financial commitments are better served in local endeavors and supporting other groups that do the advocacy. We advocate as individuals, and that is often a difficulty financially. But, If everyone focused on advocacy and no one went out into the community, I don’t feel people would be served as they need to be, so we are looking into community-based issues such as art therapies, caregiver support issues and respite for them, as well as art as a way to focus on the diseases and the stories behind it.

3. Why did you go to Washington DC for Rare Disease Week?

As I mentioned above, it is important to be informed, so as we go out into the community, we can let people know there are folks trying to help them. The info shared, not only on the legislative side, but also the medical and research side, is often overwhelming, but also important to understand. I also find that getting together with other organizations and networking with them brings all of us closer together to share ideas and thoughts to further all of our goals.

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4. Did you meet with anyone of interest? If so, whom? 

I have to say that this is kind of a funny question to me as I grew up in Los Angeles and have met many famous people. Both in film and music, so I have been raised to just realize people are people. It takes a lot for me to consider someone a person of importance, yet this year, as well as last year, I did feel there were people of importance I met.

Last year, it was Representative Brownley of California’s 26th district. It was amazing. As we talked I learned that she had recently lost a colleague to Scleroderma. It was a very close emotional conversation and she has been a close ally to the rare disease community since being on Capital Hill. That was impactful because she understood, at least half of, what Gina and I have been through.

This year was a bit different. There were two guys there who suffer from Freidreich’s Ataxia who were involved with a bike race called The Ataxian, which we watched the documentary of. These 2 guys, Kyle Bryant and Sean Baumstark, accomplished the impossible. They, along with 2 other team mates, did the Race Across America and rode 3,000 miles in less than 9 days.

Pat pictured center with stars of “The Ataxian” documentary

Their inspiration, motivation, laughter, and caring for everyone, was the biggest interest for me. It is folks like this, that unless you are familiar with their disease, you would never know about. They, and what they are doing, is why I go to DC. There are countless others that are of interest, and inspirational, and so full of ideas, courage and hope, it makes the whole trip worthwhile.

These along with the researchers, people in academia, as well as all others, including the artists at the Rare Artists Reception, are truly the ones I am most interested in and their stories, struggles, and determination to make a change. They far outweigh any person you might think is of interest on Capital Hill.

They are what keeps me going.

 

5. What was the highlight of your DC trip?

I honestly have to say that I always walk into situations with an open mind, not knowing what to expect. I think one thing will stand out, and yet it’s always something else that gets me. This trip was no exception. There were 2 things that really grabbed me that I can say were highlights.

The first was the Conference and discussion on Genetic research and Gene therapy at the NIH (National Institute of Health). Though Gina’s diseases are considered autoimmune diseases, the topics the panels spoke on were incredible. The speed that the research is advancing in is amazing and I was happy to see that one of Gina’s diseases, RSD/CRPS, is actually being studied at the NIH. They are looking into its genetic markers. It is very upcoming research and it seems the possibilities of early detection, possible treatments, and possibly cures, are on the edge of being discovered.

The second, was after the NIH conference, walking around the mall, in the rain, and happening upon The Disabled Veterans Memorial. Though it is intended for disabled war vets, the words written on that memorial spoke volumes after such an intense week. Two of my favorite quotes I read that night were, “It’s not what you have lost that counts, it’s what you do with what’s left,” and “We start by not thinking so much anymore about what we have lost. You must think about what you have left…and what you can do with it.”

 

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Disabled Veterans Memorial Plaque

 

6. What is something you learned in Washington that will likely impact your work this year?

I remember my first conference last year in DC. We sat at a table, and a gentleman named Tony Pena, who was the Vice President of Cure AHC asked if we were new to the conference. He obviously knew we were new there, as I was like a deer in the headlights of an oncoming car. He so gently said that everyone would guide us through it and not to worry because they had been doing this for years, and they still didn’t know everything.

 

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That is what makes being there so important. Every year there are new issues. New legislation. New ideas. And most importantly, new people. Yet this year I learned more than anything- we can’t do this alone. We all need to work together, collaborate, support and hold each other up. I truly felt this year, that all of us are not a rare disease community, but rather a rare disease family. We all have our own issues, but together, speaking as one group, we are truly a force to be heard. Our needs are not individual, but are all important and need to be addressed as one voice because it is hard to ignore one disease or the other when we all speak as one.

 

7. In Your Opinion, what is the greatest challenge the rare disease community or patients with rare diseases face today?

I have to say that the challenges are great and cannot be addressed with one simple answer. There are over 7,000 rare diseases and over 30 million people in the US diagnosed with a rare disease. Some have large groups of people affected, still less than 200,000 (in each condition), and some with only 3 or 4 people per condition. This causes some major hurdles and challenges in the rare disease community.

The 1st thing that comes to mind for me, is diagnosis. With our country being so large, and so few experts in any one field of rare diseases, it is a critical need to get proper diagnosis. This is often the most difficult task as far as the medical end of things go. Doctors may not be aware of a disease and misdiagnose it. Patients that do have doctors who know and admit it is beyond their knowledge may recommend the closest experts, although those experts may have no idea of the disease. This can go on for years with diagnosis after diagnosis and never actually getting to the actual diagnosis.

Early diagnosis and proper treatment, if there is any, is critical for health and quality of life. One must remember that with over 7,000 rare diseases, only 5% have FDA approved drugs or treatment. With that being said, early treatment of the symptoms can help tremendously.

Next is the size of the patient pool of any 1 rare disease. It is not hard to see how breast cancer gets huge publicity and funding and something like Pemphigus or Alpha 1, or even GoodPasture Syndrome is not ever heard of in the main stream. There are hundreds if not thousands of diseases that no one has heard of. Awareness of diseases is of the utmost importance, in my opinion, because the more people that are aware of it, the more they can gain support, and those willing to fund research.

 

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8. If Someone reading would like to get involved in rare disease awareness or chronic illness advocacy, how can they get plugged in?

There are many great organizations that do advocacy. On the rare disease side, NORD (National Organization of Rare Diseases) is an amazing group. There is also Global Genes and The EveryLife Foundation that do great work. Many individual groups specific to a disease are often great resources as well. Many of the issues these groups advocate for can have incredible effects for many diseases, not just rare diseases.

I also would say that getting involved with a support group, whether online or in your community is also beneficial. I actually got involved because someone sent the info for the Rare Disease Artist’s contest which I had never heard of before. Through that interaction, I was exposed to so many amazing groups.

If you are so inclined, form your own group and research state or federal issues. Spread the word to those in your group/s. Ask questions and don’t be afraid to ask other groups that you may not be affiliated with. Most people are more than willing to give you info or advice. I always say that the worst info or advice is that which you are not aware of.

 

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Disabled Veteran’s Memorial

 

9. What can the average person do to help make a difference in policies effecting health?

From my own interactions with people in congress and their staff, as well as on the state level, it is actually reaching out to them. I used to think writing a letter and never getting a response meant it was forgotten, but after talking with these folks, you learn that they are dealing with hundreds of issues. You need to let them know, or remind them, as they will say, the issues are real and need to be dealt with.

I am a big proponent of the Rare Disease Legislative Caucus and would love to see every senator and congressperson in Washington become a member. Not only will it show how important the issues of the rare disease community are, it will also show how a bipartisan, bicameral committee can get together. Write a letter to your senator and congressperson and either thank them or encourage them to join the caucus. It is growing and is impressive. The link to see if your senator or congressperson is on it can be found here http://rareadvocates.org/rarecaucus/#tab-id-1.

 

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10. What is your next venture?

Since Kneading Hope is a new venture, we are looking to expand our reach and impact. For the first time, we will be showing the 10,000 Hearts for Gina project and raising funds for 2 organizations. We are also trying to start up a couple of small local programs. One will be involving art therapies, and for the other, I have started attending a caregiver support group to find out how we can offer respite to caregivers and meet caregiver’s needs. This is an important part of our work.

We also intend to work with another organization to start an online gallery, and perhaps curate art shows of work from all aspects of the rare disease community to raise awareness through stories and works, as well as raise funds through awareness and research projects.

 

11. What would you like to tell us about 10,000 Hearts for Gina?

I just want you all to know that this has been an incredible journey. I have been at it for 5 years now and could never have imagined where it has taken me. It is something I share with everyone. I really think that doing something bigger than you ever could imagine is what it is all about. Sharing the works with patients, caregivers, hospitals and doctors has been about the most emotional thing I have ever done and will continue to do through Kneading Hope.

It has been an honor to be able to share some love, light, and hope through the work. Sometimes it is painstakingly difficult as every work brings thoughts of those suffering, those lost, and those who haven’t been diagnosed, but it is all of them, and their strength, that keeps me going. It truly is their project, whether they know it or not.

 

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Would you like to leave us with anything else?

I just want to tell everyone that you matter. Your voice matters, so never be afraid to speak up. Kneading Hope is dedicated to doing what we can for as many people as we can so please reach out to us if you have any requests or ideas. We are building this organization and want your feedback. Also, if you know someone who is down and out and could use a little light, love, and hope, don’t be afraid to ask us to send them a heart. We will try and get out as many as we can under our circumstances. Sometimes it might just change someone’s outlook and let them know they are not alone in their struggles.

***

Please support Pat and Gina Raring-Guerre by following and liking their pages, and thank you for sharing to help them spread the word!

Facebook: https://www.facebook.com/KneadHope/ 

Instagram: @KneadingHope1

website: kneadinghope.org 

email: info@kneadinghope.org

Donate to Kneading Hope 

Precious Diagnosis: What’s in a Name? #raredisease

Every time you click this link, $1 will be donated to research for a rare disease. Keep on clickin’! Thank you! Rare disease day, Feb 28th.

———-

Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.

You want to scream when test after test returns “normal.” You feel hopeless when time after time, appointments end without any answers- you wonder how much longer your body will hold out like this.

Each frustrated physician is at a loss, and they worry that anything more they try might only make you worse. So, one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone.

Instead of one confirmed diagnosis, you have a long list of symptoms masquerading as conditions. “Chronic migraine” for example, or “vertigo.” You instinctively know that they are only symptoms of a larger, more pertinent illness, but no one can pinpoint what it is.

When I was 22, I was diagnosed correctly and immediately with a rare neurological condition.

There are no words to express my devastation; the world as I knew it had crumbled.

The early diagnosis did not help me find remission, but being diagnosed immediately afforded me some stability.

Instead of blaming my body, instead of staying up nights searching online to identify what might be wrong with me, instead of spending years looking far and wide to find the answer to the screaming question disabling me, I could turn toward the crucial journey of acceptance, coping, and seeking treatments. I sought knowledgeable doctors, read helpful research online, and reached out to support groups with the same shared name of my condition. I could blame my disease for my illness, and so could my family.

At 28, I had a very different experience. I became more ill than I have ever been… and I’ve been undiagnosable ever since. Everything has been different this time around.

Tests were normal, doctors gave up quickly and treated me like they were afraid of me. Hospitals admitted me immediately, but had no answers to give.

I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…

I felt so alone, and it seemed that my body was trying to kill me.

For most patients with rare diseases, it can take years to recieve a proper diagnosis and treatment.

 

Seven years is the average wait.

Even if it’s a terrifying prognosis, having an answer, a community, having a standardized list of symptoms, expectations, and FDA approved treatments, is so validating when you are suffering so fiercely. Instead of blaming yourself, you can finally name the monster taking you over.

When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move, or sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.

Ironically, the same people will later whisper that you’ve become obsessed with your illness and seeking out treatments – that it has consumed you.

If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.

You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.

YOU are rare.

As for myself, I have come to accept that my diagnosis is rare and complex. It may in fact forever be “undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease” and “spoonie.”

We may be undiagnosable (for now), our illnesses might not be easily identifiable, but we are not invisible.

———

Article also published on The Mighty.

The Honest Truth

Poet Kristen Braatz Eiden shared this with us in honor of the passing of her beloved friend, and fellow poet Mary Jane Gonzales. Thank you, Kristen for sharing your beautiful and poignant poem. When I read your heartfelt poetry, it will always remind me of Jane ❤

Diary of a Clay Pot

The honest truth…
There are many things I would love to share
But wonder if you would even care

The honest truth…
We all have crosses to bare
So many burdens of past failures made aware

The honest truth…
Some things you would not want to hear
So many things that need to be made clear

The honest truth…
The pain is for real
But to many its seems unreal

The honest truth…
We all stumble and fall
We all need someone to catch our fall

The honest truth…
When we begin to realize there is no perfect here on earth
We begin to see life at its true worth

The honest truth…
Some of my worst days have become my best
There is truly hope in the unrest

The honest truth…
I would not be where I am today
Without every pain and heartache of yesterday

The honest truth…

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