Rare Disease Day 2021 Feb 28

Why are people with Rare Disease called ZEBRAS?🦓

When doctors are in med school, they’re taught that when you hear the sound of hooves, it’s probably a horse.

That means, when a patient gives them a list of symptoms, and it sounds like a common condition, then it’s most likely that common condition.

HOWEVER, there are exceptions to that rule.

Sometimes the sound of hooves are actually zebras.

We as patients may present like we have one (or several common conditions), but can actually have a rare disease that’s difficult to spot, hard to diagnose, and even harder to treat.

We are called zebras, and in the Rare Disease world, zebras have MANY different color stripes.

🖤🤍💙❤💛💚💜🧡🎗✊

A Day in the Life of a CRPS/RSD Sufferer

“In Her Skin”

She hasn’t slept for days. The pain in her leg is like ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks.

“When do these little guys ever take a lunch?” she wonders.

They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, causing her to gasp for air.

Her entire leg has become pain. It is no longer a leg. It is no longer her leg. It belongs to a monster. To a disease she does not yet understand.

The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with burning fire red. Like a force-field that radiates around the limb, the colors have replaced flesh.

She waits for the sun to rise for her doctor appointment. All night, she recalled her list of symptoms over and over again. She can’t leave anything out this time.

“He has to help me. I have to make him realize what is happening to me. I cannot live like this. I will make him understand.”

***

Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from the pain that drains everything.

Her heart races, body shakes, face tingles and room spins. Ever-present nausea sits like a rock in her belly, and fatigue pulls her limbs down with gravity. But all that she registers is pain.

She feels herself floating away, but the pain in her leg keeps pulling her back. It holds her captive.

She can’t keep her eyes open. Slow tears stream down her face. Flashes of today’s appointment and the last few appointments cut through the fog.

Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are too young to be in this much pain.”

Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try harder…No pain, no gain!”

Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”

General Practitioner: “Pain medication is too hard to prescribe these days. Try this prescription strength Ibuprofen instead.”

***

It’s the middle of the night, and she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, three times the size of the other, and his beautiful, 20-year-old love barely able to form words.
Even in her state, the doctors and nurses look at her with suspicion.

“She has CRPS,” says the fiancé with an obviousness in his voice. He assumes they will understand.

No, CRPS is a condition that the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face.

“She can see someone else for pain medication,” the doctor says, never looking at the girl’s face.

From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl is administered medications.

“Don’t stick her with any needles and keep away from this girl’s leg!” directs the angel nurse. She tapes a sign to the bed saying “No sticks. Don’t touch legs.”

After the girl calmed down, the doctor sends her home with a prescription for pain medication and anti-inflammatories. An antibiotic cream was given to address her sores.

***

She finally had some hope. The medication wasn’t helping the pain completely, but she did get a few hours of sleep, finally. She felt more like herself than she had in God knows how long.

Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her was like a window had been opened, and she could breathe again.
Maybe in time she would find a doctor like that nurse. Maybe if someone could help her, maybe she could actually do this.

Then, her mother stormed into her room.

“Your Dad and I have decided we want you out by tomorrow.”

“What’s going on, mom?”

“We know you have been going around trying to get drugs from doctors. After your trip to the ER last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”

****

This short story was originally published in 2014 after I was inspired by an amazing young woman I connected with in an online support group. Tragically, this young woman passed away recently due to CRPS, and lack of appropriate medical care. I’m sharing this again to honor her fight, and all of those battling intractable pain. For some of us, humane pain management is life and death.

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 increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.

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.

It’s inspiring how strong people can be, beating the odds every single day no matter what challenges they face.

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.

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”.

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.

 

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.”

 

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.

 

 

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.

 

 

 

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.

 

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.

 

 

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.

 

 

 

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.

———-

Natalia Drapina Radiograph of my Sorrows

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.

“Rock of Ages” poem by Mary Jane Gonzales

ROCK OF AGES
Father, I am sinking.
Would you throw to me a rope?
Would you please confirm the scripture
That I’m never without hope?
Would you strengthen me in spirit
As I trod this rocky road?
Would you bear for me the burden
That is such a heavy load?
Would you wipe away the tears
That keep falling from my eyes?
Would you lovingly send mercy
When you hear my anguished cries?
Would you not let pain consume me
Taking focus out of prayer?
Would you be my rock of ages
Greater than my worldly care?

-Copyright Mary Jane Gonzales

(PSALM 91:1,14 Inspiration verses)

 

Today we honor author, poet, and chronic pain advocate Mary Jane Gonzales by reading her poetry, as her family and friends gather to pay tribute to her at her Celebration of Life service. Her poetry was actually her prayers, as she began praying in verse after her illness struck nearly 30 years ago. Jane became a Christian later in her life, and her faith was her rock and guiding light throughout her battle with the severe neurological disease Complex Regional Pain Syndrome, which kept her confined to a bed through the final years. Though her body fought her daily, she used what energy she had to be a source of encouragement to others living in pain. If you would like to read one of her inspiring books, you can find her author page here where several of her books are available for download as ebooks. 

PRINTABLES Thank the People who Support You

Hello Readers!

November is Caregiver Awareness Month, when we honor the people in our support system. Three years ago, on this blog, @aBodyofHope named November 13th, Caregiver Appreciation Day, otherwise known as Supporter Appreciation Day!

On this day, we can reflect on the ways people around us make life a little bit brighter!

It’s rare to find those who care, even after tragedy strikes. In crisis, our circles tend to thin out, and only the very special remain in our lives, trying to fight along with us.  We try to convey how much we care as often as we can, but words can feel inadequate at times to express what their presence means. A sweet little reminder always helps to drive the point home! 🙂

Your support system may include a friend, your spouse, a family member, a physician, a home care nurse, a neighbor, an online support group, or people from your church. How touched they’ll be when they’re sent this surprise from you!

Consider the small and big ways they bring light into your world. Share one of these specially made images to convey your gratitude.

Because of my personal losses in the last couple years, I didn’t know if I could continue doing this campaign each November. In time however, the people who remained in my life cheering me forward, reminding me of my strength, now appear sweeter and stronger than ever. More than anything, I wish I didn’t need any help at all because giving is simply easier than recieving… It’s such a learning curve, but I try to be more grateful than guilty as much as possible. Any way to inject more kindness and smiles into this world is something I want to fight for. I hope you will help spread the word! 

If you are a caregiver to someone with a chronic or terminal illness, if you’re in the support system of a loved one with mental illness, or if you are supporting someone going through a major crisis, this is a reminder how much you matter. We can’t run away from the hands we’ve been dealt. You might have that choice, yet you’ve chosen to stay and fight along side your loved one. You lend your own emotional, physical, or mental strength at times. Someone like you is so very rare. Thank you for being you!
This collection was created as a collaboration between charcoal artist, CRPS and Mast Cell Activation Syndrome sufferer, Robyn Triscari and myself as a gift to you! Robyn wanted to give the chronic illness community a way to thank our supporters and “champions” so we worked together on this year’s Supporter Appreciation Day! Thank you, Robyn for your generous idea, and for sharing your artistic talents!

To my readers: It’s so meaningful to me that you follow this page, leave such encouraging comments, and share these messages with your friends. I treasure your readership and continue to pray for you. You challenge yourselves to learn all you possibly can from your lives, and your comments continue to challenge me.  You make my world so much brighter, and bigger! I want to thank you on this supporter appreciation day for your impact on my life!

You may save these images to your phone or computer, share them with your loved ones on social media, and we would love for you to print them if you’d like to frame one as a gift or send as a special card.  

We encourage you to include your own personal message of thanks along with it.

 

Image and quote by Robyn Triscari for RSD/CRPS

http.Download You Hold My Heart Image

Cloud Photograph by Marie Hunter

Download Thank you for being a good friend Image

Download No words can express Image

 

Collaboration between Robyn Triscari and abodyofhope

Download Hand in Hand Image

 

Collaboration between Robyn Triscari and abodyofhope

Download Thank you for your part image

 

If you have a “champion” in your life, someone cheering you forward, this is the perfect occasion to say, you’re the best.

We hope you will help us pass on the Caregiver Appreciation Day message!

For your convenience, I have also made these images available to share individually from the Facebook page,  https://www.facebook.com/groups/chronically.inspired  

Please share in comments who you are appreciating today!

*****

 

If I Ask You for More: Poem to a Caregiver

Learning the Gift of Gratitude

More poetry, Quotes for Caregivers, and what it means to have a Home Health Aid here

 

This is my first attempt at linking downloadable printables here, so your feedback is appreciated.

Grieving with a Chronic Illness

This 20-year-old blogger and survivor of multiple chronic illnesses describes her grief process. You may be surprised to see that even on a somber topic like mourning loss of health, she writes from an outlook of gratitude; below she shares why she chooses her approach.
If you like this post, check out the article she wrote last week- it will give you a boost of inspiration!

Life with an illness

With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it hit me like a truck. Within 2 days I was in the hospital. So going from constantly on the go and enjoying a normal 20 year old life to daily appointments, constantly miserable, and not being able to take care of myself alone. Its normal to have grieving stages while being sick, here are ways I grieve with having several chronic illnesses.

• The anger phase.

Its okay to be angry, I completely understand this phase. I’ve lost a lot like my job, a lot of people in my life disappeared, and I can’t do a…

View original post 538 more words

Inspiration, for a bad day with Chronic Pain

You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain can relate to that feeling, but it may help in some way to remember that your feelings are absolutely normal.
Illness, pain, long-suffering literally deprive the brain of the chemicals and hormones required to feel a general sense of happiness and peace. It’s not pain or illness alone that causes depression, but instead the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness.

What might have been a passing thought of fear, thanks to the ongoing imbalance in the body, can become a spiraling pit of despair and feelings of doom. Pain can wriggle into your very soul, and drain you of every resource.

This month is my 13 year anniversary with chronic pain (RSD/CRPS). Then when the condition progressed to stage four with comorbidities 6 years ago, I felt as though I completely disappeared. Illness swallowed me up.

If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and move forward with their lives while you fight for your own in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

Thank you to The Mighty for choosing my article for publication.

Chronic Illness and Surrender

Inspired Impressions by Danielle http://ccconvoitise.deviantart.com/art/Danielle-436267734

Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.

It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.

When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans. 

My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch. 

No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals. 

I was in control. 

Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path. 

Surrender is a difficult topic or act for most of us to comprehend.

I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?

Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course. 

“Do you want to do this yourself?” a nurse once snapped at me. 

Oops, I thought. But then…I knew my answer would have been, “yes.”

Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind? 

Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.

They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.” 

Illness can become your life if survival becomes your new goal. 

There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes. 

Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.

I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness. 

The world tells me to push, to fight, to Just. Keep. Going.

But I learn quickly that there is no push  in this game. Only tricks, and cheats, and strategy. 

It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.

Illness owns my body. 

There is no free will flesh. There is no- push for one more minute.  There is no- if I just take this pill.

This body has been exchanged, kidnapped, swapped for a rag doll.

Once, asking for help seemed an impossible exception only made in the most dire of circumstances. 

Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this? 

What better picture of grace?

Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray. 

Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.

My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.

God is in control, they say. They say it like an empty cliche. 

Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior. 

In this broken body, I see freedom.

(Re-posted from 2015)