Category Archives: Disability

Gifts for people with Chronic Illness & Disabilities 2018

If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Here are a variety of gift ideas meant to inspire, comfort, entertain, and they are appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice and links to help you shop!

*Starred shops are run by disabled sellers.


 

Find_Prime._CB331800185_

Internet Subscriptions

Streaming video allows your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to watch great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming subscriptions, and they all cost about $100 per year. The Amazon Prime subscription also allows access to a wide variety of ebooks, audio books, and music, alongside streaming video.

The Amazon Prime 2-day shipping feature is an great option for anyone who has trouble getting to the shops. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is another fabulous gift subscription.

An audio book subscription to Audible is a sweet gift in my opinion! If your loved one is like so many of us with chronic illnesses, reading becomes a tricky task due to blurry eyes, migraine headaches, brain fog, and more. Audio books can make reading enjoyable once again. It may or may not be on my Christmas list this year (hint dropped!).

Read the rest of this entry

Advertisements

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.

A Voice Unheard: Author Interview with Chronic Pain advocate, Jane Gonzales

I am so happy to welcome, author, poet, blogger, and advocate for the chronic pain community, Mary Jane Gonzales!

I was given the great honor of being asked to contribute a piece for her book, A Voice Unheard. After reading it in its entirety, I immediately asked Ms. Gonzales for an interview! I know it will impact every reader, disabled and abled alike.

Congratulations on publishing your 10th book, A Voice Unheard  

You have very generously allowed your powerful poetry to be shared here on a Body of Hope in the past, but this is your first interview here. I’m excited! Shall we begin? 

 

1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?

Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”! 

2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?

This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.

 

 

 

3. Aside from writing, what do you enjoy doing in your free time?

My pastimes would be reading, writing and crafting (especially, card making and scrap booking).

 

4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?

Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.

 

5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?

Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about  a community/ involving members of  the community. I found that to be a bit scary, actually.

Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!

Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.

  

6. How would you describe your personal writing process?

(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)

I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.


7. What is your favorite part of being an author?

My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.

What is your least favorite part of being an author? 

My least favorite part is marketing i.e. self promotion.

8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?

What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.

9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?

Because they need to be told!

 

10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?

Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.

I wrote it now because I couldn’t be silent anymore.

11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?

I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.

A Voice Unheard is available for your Nook, tablet, or download as PDF ebook at Smashwords.  



Interview was first published April, 2016

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.

Party Etiquette for a Sassy Spoonie/ Missed Manners

Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.

Original Painting of Glamorous Woman by Kim Legler on Etsy | Party Etiquette for the Sassy Spoonie

Glamorous Woman | Kim Legler

1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”

See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!

2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”

See, you can play this game of witt too. What a wonderful party!

3. Smile
When in doubt, smile.

Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!

So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!

Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.

Merry Christmas, happy holidays!

This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.

Second Annual Disability Pride Parade in NYC!

Today was the second annual Disability Pride parade in NYC! 

Here in this video you’ll see disabled individuals dancing together to commence the opening of the parade. This dance speaks to the nature of disability- the diverse disabilities we can see with our eyes, and those which are invisible.

As you watch the video, and think about some of the reasons for a parade like this…

Many who have declining health feel ashamed of their bodies, and in time, may also feel ashamed of themselves. Friends stop reaching out as health issues just sound like “drama” to most people who have never faced a health crisis. So many have been forced to leave behind a career, or dreams they once held dear. Although it sounds harsh, it’s not uncommon at all for family members to tease or bully as individuals change physically and/or mentally, leaving them extremely self conscious. People can be very judgmental of body shapes, walking aids, and challenges that are unfamiliar. Others are quick to call out what they see as “inconsistencies.” Even strangers in public call those in wheel chairs “liars at times when they don’t understand that paralysis isn’t the only reason one might need the aid of wheels, or that a handicapped parking spot might be needed by someone who can walk normally.

It’s no wonder that people start to lose their self worth, and isolate themselves as a disability changes them.

You know what? FORGET EVERYONE!

So, this isn’t a news flash, but people don’t get it, and they don’t get you. You, my dear, have so much to be proud of, and SO MUCH to share with the world! 

You are an over-comer, a warrior, a never-giving-up, wheel rolling, cane sporting, walker toting, re-inventing, hope finding, doing it anyway, sometimes invisible illness (but never invisible)- always working to conquer your challenges: BRAVE fighter! Heck yes you should be proud!!!

You don’t have to prove how much pain you’re in every day, how badly cancer changed your body, you don’t have to show your prosthetic, or tell anyone what your mental illness is… unless you want to. You are living proof of pure strength. You don’t have to work to be an inspiration to anyone, but hey- you already are, kiddo. You’re pretty spectacular just the way you are, in the body you have right now.

Please don’t keep your amazing self on lock down. You’re the only you this world will ever have! Heart (((hugs))) going out

What do you think of the Disability Pride Parade? How are you #DisabilityProud in your own life? 

The Dream #SickLivesMatter

Sick lives matter vitals

After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?

How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.

Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.

Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).

HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.

I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?

Your life matters. Your story matters. Your voice matters.

#SickLivesMatter

To share your story or to learn how you can get involved in advocacy online, email abodyofhope@inbox.com

 

Sick Lives Matter

Sick Lives Matter

I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication?  No one should be suffering like you are.”

Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.

When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.

This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.

People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.

#sicklivesmatter

Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.

Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.

#SickLivesMatter

You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.

I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!

You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.

If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?

Wrong! They aren’t shutting us down, they’re starving us out! 

We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.

You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently. Even though it’s not your job to be an inspiration… you already are. You matter. 

#SICKLIVESMATTER

Email abodyofhope@inbox.com if you would like to share your story or to ask how you can get involved with advocacy programs online.

 

Dear Body, I’m breaking up with you

There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.

This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….

Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!

Body, I break up with you. Sorry, not sorry.

I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me. 

This is my self love. This is my self compassion. This is my choice.

I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you! 

I choose, I choose, I choose.

My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.

I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.

Sign here X  _________________

Please support Rare Disease Day on February 29th. www.rarediseaseday.us

Gift Ideas for People with Chronic Illness and Disabilities

If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Here are a variety of gift ideas meant to inspire, comfort, entertain, and are still appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice and links to help you shop!

*Starred shops are run by disabled sellers.


 

Find_Prime._CB331800185_

Internet Subscriptions

Streaming video allows your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to watch great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming subscriptions, and they all cost about $100 per year. The Amazon Prime subscription also allows access to a wide variety of ebooks, audio books, and music, alongside streaming video.

The Amazon Prime 2-day shipping feature is an great option for anyone who has trouble getting to the shops. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is another fabulous gift subscription.

An audio book subscription to Audible is a sweet gift in my opinion! If your loved one is like so many of us with chronic illnesses, reading becomes a tricky task due to blurry eyes, migraine headaches, brain fog, and more. Audio books can make reading enjoyable once again. It may or may not be on my Christmas list this year (hint dropped!).

Read the rest of this entry

Get More Resilient

Our resiliency has limits, but we can always become more resilient.

My Life: Beauty Love and Chaos

Blog, Poems and Short Stories by Becky Allen

DeltaLifes.blog

HEALTHY LIFE, BRAIN & SUCCESS...

Tea With Jennifer

A time to refresh body, mind & spirit...

Fightmsdaily

Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

Miss Diagnoses

Life with assorted ailments

ixnews.win/

Health Breakthroughs

Pain Management Specialist in San Diego & La Jolla

Pain Specialist treating Intractable Pain & Treatment Resistant Depression

Twilight

( writer )

Nosy Parker Blog

musings of a curious creative

Susan Sleggs

Flash Fiction and personal thoughts

The Adventure, No The Unfair Journey of A 25 Year-Old In A 80 Year-Old's Body

Not Just A Mom Blog, I'm A Real Person With Real Problems. My Health Issues, My Families Health Issues And My Experiences With It All.

Doss Doc's

Comedy Blogger Extraordinaire

%d bloggers like this: