10 Easy Ways to Raise More Awareness during: CRPS, RSD, Nervember, November
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 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, largely thanks to social media.
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, we 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. Instead of simply typing CRPS, go the extra mile to spell out Complex Regional Pain Syndrome so those in your life can personalize it, and make no mistake that this is is indeed a complex pain condition you and others are living with.
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, including 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.
The first Monday in November 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 life?
Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS
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.
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.”
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.
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!
Poem for RSD/CRPS “Pain Tokens”
It’s not free.
It’s not “regional,”
And it’s not seasonal.
They say it’s like fire, but it’s so much more.
Like pieces of yourself scattered on the floor.
It’s not free.
It will cost, and it will take.
People will think your pain is fake.
You’ll feel it in your body;
You’ll feel it in your soul.
It can start when you’re a kid;
It can last until you’re old.
It’s not free.
Your family will pay.
Some will behave in a different way.
Some try to help;
Some go away.
Some can’t stay to watch you change.
It’s not free.
It moves and grows in ways you cannot know.
You adapt…you can flow.
You can bend,
You can throw caution to the wind!
It’s not free.
You pay the toll;
You walk the road.
Share some coins;
You’re not alone.
Today is Color the World Orange Day! This is an annual international campaign to raise awareness and funds for chronic pain research. Please participate by sharing something orange to social media (or to your blog) with the hashtag #CRPSORANGEDAY. Thank you!
I don’t have the Privilege of opting out
I can’t sleep. I feel so helpless and outraged over the losses and violence in the last week. I don’t want to pray about it. I don’t want to blog about it. I definitely don’t want to discuss it incessantly with others on facebook or twitter while we sit safely in our homes.
I want to do something.
I want to help.
I want kids to stop being killed on our American streets: black kids, gay kids, cops… are we at war? Because we are tearing our own people apart.
I don’t actually feel like I have a card to play. I’m a white woman in a safe neighborhood. I have plenty to eat. I am certain I’m privileged in ways that I haven’t even thought about.
Until I was in high school, I was raised in a home with bars on the windows, guns shooting every night, across the street from the projects, all the kids in the community had to be inside by dark. We were the only white family around, but our neighborhood was so diverse, that I grew up without the concept of racial divisions. But this world is going backward. My mother said yesterday that this week reminds her of the riots of 1968 as tears rolled down her face. We are going backward.
I told my sister this weekend that I’ve been having nightmares about her upcoming vacation to FL ever since 50 kids out at a gay night club were murdered. She said that she and my sister-in-law have been cautious after dark, and try to stay around areas with police even if they are out to eat after the sun goes down. They are an interracial gay couple, and theoretically this America accepts them today. But if you follow the news, you know that they BOTH remain in danger, so they show up in my bad dreams.
There’s a whole lot of sharing right now about forgiveness, unity, and praying from white people like me, but where is the outrage? Where is the responsibility to DO SOMETHING?
I might be white, but I don’t feel I have the privilege of doing nothing right now.
We are ALL responsible, don’t you see? This our world.
Use the hands and will and talents God blessed you with to rise up and help when something terrible happens in our country. Give blood, go to a peace rally, set up a GoFundMe page for one of the families involved in the shootings, organize a fundraiser in your community for an ending gun violence organization.
Instead, a lot of people are saying things like, “all lives matter” not just “black lives matter.”
Listen, it’s easy to say that when you aren’t part of a disenfranchised community who is desperate for a voice. If you have said that, remember that you have children right by you who don’t have enough to eat, young women, men and children being sold into sex slavery right in your community, and someone within walking distance is home-bound for the rest of their lives because we haven’t received competent medical care. These lives matter, and there are groups concerned to raise awareness for these victims as well.
My point is that it’s hypocritical to give children with autism a voice who need it, and also say that the black community shouldn’t raise its voice also. To have an ALL LIVES MATTER world, we have to be equals, and ALL have an equally loud voice.
You don’t have to use a hashtag or join a group of protesters to help build equality. Compassion, empathy, and action are the missing links that can help build bridges that we are craving for unity.
I pray this video from poet, author, and life force of nature, Maya Angelou is a peace to your heart, and an encouragement for you as she is for me.
I may feel helpless today, but never hopeless for change. Please be safe. God be with you.
Opioid Tax: Letter to my state representative
Dear State Representative,
Myself and my family are very excited about all of the things you are doing to support those with disabilities. My father heard you speak on the issues of pain medication and addiction, and trying to find common ground so both pain diseases and addiction disease can be treated simultaneously. That is a stance we in the chronic pain community are very excited to hear and support you in that!
In case you did not know about this newly proposed opioid tax, I wanted to give you a little information.
It is proposed that opioid pain medication will be taxed one cent per milligram to fund treatments for addiction.
As you can imagine, those with chronic pain diseases like Lupus, Multiple Sclerosis, CRPS/RSD, Fibromyalgia, or post-cancer pain would be paying for addiction treatments while those with addiction will just buy their drugs illegally instead of paying a raised price from the pharmacy.
Because this tax proposed is “per milligram,” those suffering with the most severe, most debilitating cases of degenerative neurological pain will likely have the most un-affordable pharmaceutical pain management care, as our doses are typically higher, as you might imagine.
As I am a newly single woman, more recently on disability, I know that the government works hard to keep drug prices low for those with disabilities. A tax will only make pain medication more un-affordable for those who are spending all of their funds on medical care as is. If this tax is passed on pain medication, it will begin a precedent to tax other RX drugs. It’s one cent now, but it won’t stop there.
Since the CDC’s federal guidelines on opioid control, chronic pain patients are struggling to find pain management care with good pain doctors who are not afraid to treat us. Deaths and overdoses continue to rise. Deaths of people in pain, who are without treatment, and deaths from those who are addicts, continuing to overdose. The guidelines do not work! The tax will not work either.
Again, pain patients are being forced to pay for a disease (addiction) which is not our own. The tax would exclude hospice patients, but what about pain patients who are bedbound like myself? What about those of us who have tried every treatment available and medication therapy is the only option that doesn’t worsen our conditions? What about those trying to maintain a somewhat functional life through chronic pain, and to keep off of permanent disability, taking medications is the only way to continue working and participating in family life?
Medical treatments should never be a punishment. Is this a “sin” tax? Am I sinning? Why should I be ashamed of having an illness I didn’t choose? I am alive in part because of my medications, and so are many, many people! That is nothing to be ashamed of.
Will diabetic medications be taxed to help treat cancer? Maybe Methadone, Suboxone, and Narcan (addiction medications) could be taxed to pay for chronic pain treatment facilities! We are certainly in need of those.
Thank you for using your platform to speak for people like myself.
Please do write your representative today, so a ludicrous tax like this would never get passed. No time to waste!
10 insights on life: Awareness through ME
Today, May 12th is Chronic Fatigue Syndrome (ME/SEID) and Fibromyalgia World Awareness Day. This blogger @ Tips for ME discusses the mysteries of ME/CFS. Particularly interesting to me is the “Canary” or sensitivities aspect, which after 5 years, my doctors still haven’t been able to understand why I can hardly tolerate my own voice, sounds, lights, or smells. Chemical sensitivities alone can be such a confining aspect of Chronic Fatigue Syndrome/ME for so many CFS/ME sufferers.
Thank you for checking out a few of these enlightening ME/CFS facts, life wisdom, and helping raise awareness today!
This ’10 insights’ #May12BlogBomb post is a perspective from the awareness of having ME, looking outwards at the world through the lens of ME. I believe that people with ME (pwme) have useful observations to contribute to society, perhaps a little akin to Old Testament minor prophets. This can be compared to the voices of other marginalised people groups, such as the queer community, the Equal Rights Movement and feminism. Each marginalised group gains different insights on life, related to their specific barriers to inclusion.
Table of Contents
2) Anything Can Happen at Any Time
4) A Rose by a Different Name Does Smell Sweeter
5) The Authority on Your Body is You
6) Access to Health Requires Self-Reliance
7) Very Little Knowledge is Truly Known
8) Learn your Limits and Take a Step Back
View original post 5,017 more words
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.
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.
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.
Email email@example.com if you would like to share your story or to ask how you can get involved with advocacy programs online.
Careful what you wish for
March is Multiple Sclerosis Awareness Month. Since many chronic illness symptoms can mimic MS, and since MS is completely different in everyone with the disease, the people suffering can get lost behind the vague name. This courageous young woman, blogger, and MS survivor shares about the “unforgettable” week of her diagnosis. She puts a very clear face on such a foggy disorder- thank you for reading for better understanding.
12 years ago today, October 20th 2002, I woke up, went to the kitchen in my pajamas, Sunday morning, made breakfast, went to the living room while eating it, flipped the pages of a magazine, got up again, put the mug and plate in the kitchen sink – and then everything went black. I have a very faint recollection of feeling dizzy and nauseous but I don’t remember any more. I know I walked three or four steps because I was found on the floor by the kitchen door. On the wall there was a mark my fingers made possibly when I was trying to hold on to it not to fall. But I don’t remember. No one knows how much time I was out. My left knee and arm were bruised, and so was my head.
The story they told me was that my grandfather, who was living with…
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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