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Category: Guest Blogger for RSDSA

I Became What Didn’t Exist for Myself

Written by Sally Fowler for the RSDSA blog.

I’ve been living with CRPS for 10+ years. Mine started after a horseback ride severely twisted my right arm behind my back, causing nerve damage. It took about four years to spread to full body pain, muscle spasms, tremors, brain fog, partial paralysis, loss of limb awareness, loss of balance, thermoregulation problems, and more. It took five years to be diagnosed; by then, several doctors told me there was nothing they could do for me. 

I’d planned to be a horse trainer & professional horse photographer, and went to college 843 miles from home to pursue that career. I sustained my initial injury my freshman year, two months into the first semester. I had three friends, no nearby family, and no primary doctor. I didn’t know it at the time, but that ride disabled me. Mid-way through college, I discovered a natural talent for baseball photography, and I switched my career focus to it, because I couldn’t ride anymore. By senior year, I could barely hold my camera for 30 minutes without severe pain and tremors in both arms. Riding and driving triggered hours-long neck paralysis. I didn’t get early treatment when I needed it most, because while I saw a doctor within the first year, and he did mention RSD, he was convinced I couldn’t have it because it was rare. His mistake, plus my lack of knowledge and resources meant by the time we got the diagnosis, I was already disabled, and beyond the point of traditional medical assistance. 

After college, my life was ruled by CRPS. Nowhere and nothing was without pain. I was worried and cautious. I wasn’t active. My quality of life was terrible. I felt trapped, angry, and hopeless. My boyfriend encouraged me to try photography again as a hobby. I dismissed it, reminding him of all my new limitations. He joked that all we needed to do was get me a service llama (not a real thing) that I could ride, strap the camera to its neck, and work that way. It was probably the brightest, funniest spot of my day. It sparked an idea we hadn’t considered yet – what about a service dog?

The first time I felt safe with CRPS was six years after my initial injury. 

I fell while playing outside with Robbie, my service dog, and blacked out for a few seconds. When I came to, he was pushing his nose against my face, licking me, and standing over me. My hands were burning with the pain from hitting the ground, my whole body was shaking, and I felt incredibly weak. As he had been trained, Robbie pushed his head under my arm, pushing me off the ground and onto his shoulders. From there, I pressed one hand against his chest, one hand on his shoulders, and brought myself to a stand while he assisted, standing as still as stone. Walking ever so slowly, my hand on his shoulders, Robbie led me back inside the house, helped me change into comfy clothes, and into bed, then laid nearby. What once would’ve taken 20 minutes to get to safety, Robbie did in five minutes. 

Robbie was the beginning of changing impossible to possible. There weren’t CRPS service dog trainers available to help me train him. I took my experience training horses, reapplied the knowledge to training Robbie, then developed my skills and education as a dog trainer. Today, I own a dog training business. Disabled Advantage is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world. I became what didn’t exist for myself. I’d like to share a bit about CRPS Service Dogs, and give you access to reliable information.  

What is a CRPS Service Dog?

It is a type of service dog who helps someone disabled by CRPS. Not everyone living with CRPS needs or wants a service dog’s assistance. A service dog has the potential to be as variable in its work as the CRPS is, making their assistance transformative where other approaches have failed.

What Tasks Might a CRPS Service Dog Do/How Do They Help?

Typically, service dogs do tasks (activities) that are impossible for their handler to do. CRPS service dogs provide a broader range of assistance, performing tasks which are difficult, impossible, and those known to trigger pain. The service dog doing the activity prevents the handler from developing the flare they would’ve incurred by doing it themselves, thus keeping day-to-day pain levels more stable and manageable. They work to prevent flares, assist during flares and day-to-day life functions, and help us recover after a flare, thereby increasing a person’s functionality and independence. Though not a cure, CRPS service dogs are a game changer. 

In my experience working with and talking to CRPS teams, most people need a light or heavy mobility dog, primarily assisting with mobility-based tasks, given the far-reaching impacts CRPS has on our bodies. The dogs are often cross-trained in psychiatric tasks to help with anxiety, depression, brain fog, & tasks specific to CRPS and compounding disabilities. Tasks may include:

  • Opening/closing doors
  • Assistance rising from a chair, bed, or the floor
  • Stabilization for walking, getting dressed, in/out of the tub, rising from a chair, dizzy, etc.
  • Bringing specific items or people
  • Providing deep pressure for pain/anxiety/tremors or body warmth to stabilize temperature
  • Remind to take meds, to move around, etc.
  • Moving heavy objects
  • Assisting with repetitive motion chores, such as laundry
  • Carrying flare kit in a pack
  • Guiding handler to a person or place when disoriented or post-fall

How Might I Partner with a CRPS Service Dog?

  • U.S. federal law allows people to train a service dog themselves, with a trainer’s help, or by applying for a pre-trained dog from a program or charity. Currently, there aren’t programs specifically for CRPS Service Dogs, and very few trainers know of the syndrome or what considerations go into training a dog to work with a CRPS disability. Programs typically advertise based on need, such as mobility or psychiatric, not specific conditions. Many programs don’t offer brace or balance tasks. 
  • In other countries, you must go through an organization or work with a trainer. Check ADI to find assistance. 

What Should I Consider If Training My Own?

All service dogs need to be well-built, have no health issues, the right size for the task assistance needed, and the right temperament. Before looking for a dog, you need to know what tasks you need.

  • Size – The more intense the task, the bigger the dog. Mobility dogs need size on their side to help with stabilization, opening doors, and moving objects. Any service dog must be well-balanced, well-built, and not disabled themselves. 
  • Temperament – Confident, friendly, willing to work, medium energy, focused on you, 
  • Coat – Being able to tolerate the feeling of their fur & fulfill grooming care needs is vital
  • Barking – If you have centralized CRPS, barking can trigger vertigo, passing out, and dizziness. 
  • Finances – No service dog is free or cheap. Owner-training can be $1,000/year for upkeep alone of health, toys, food, grooming, if not more. Service dog training is specialized for a reason. Your local pet shop will not be able to provide the level of training a service dog needs. 
  • Exercise – Doing their job isn’t enough. I rely on a variety of outlets, including fetch, puzzle games, walks, a treadmill, and agility.  

Can I Just Get My Dog Certified/Registered?

In the U.S., certification and registration are not required by federal law. Select areas have voluntary registries, but doing it doesn’t turn your dog into a service dog. Websites offering certification and a vest are scams. A vest and a piece of paper don’t make a service dog. Intense training over 1-2 years in obedience, socialization, public access etiquette, and task training builds a service dog, along with the dog having the right temperament and suitability for the job. 

Where Can I Find Reliable Information and/or Help?

  • Assistance Dogs International – Learn about service dogs, find a program or trainer accredited by ADI through their “member search”, best resource for international
  • Ellas Animals Inc. – a nonprofit who helps people owner-train service dogs in the U.S.

Connect with Sally via her website, Disabled Advantage Dog Training & Consulting, LLC, on Facebook via her page titled Disabled Advantage Dog Training & Consulting, LLC, Instagram via @disabledadvantage and on Patreon via disabledadvantage.

A Keyword Gave Me an Instant Denial

Written by the Hon. Jenn Coffey for the RSDSA blog.

On the occasion of marking Medicare’s 58th birthday, I teamed up with an organization called “Be A Hero.” An organization that believes we should be able to access care without selling our lives away. Things like ketamine infusions and LDN (Low Dose Naltrexone) have helped some CRPS warriors. So many of us can’t even get a chance to try these therapies with expensive price tags impossible for most to reach. They work with people to help fight the private insurance monoliths that turn their backs on our medical care needs. 

Be A Hero says, “Here in the richest country in the world, and everywhere, we believe health care should be a human right. Everyone should have the care they need, no matter who they are, where they live, what job they have, or whether they have a job at all. Our team takes on critical fights to transform America’s healthcare system so that it guarantees all of us the care and dignity we deserve.”

My first meeting was with the finance committee chaired by Senator Wyden’s staff. I met with one of the same staffers I had before. Now I was coming back to tell her how everything we had fought for the first time, didn’t happen. That I was still fighting for care. How they still found a way around covering me. I reminded her about CRPS and the treatments and medications we need access to. I even showed her a text message denial.

The first message says “Thanks for submitting your request.” Nine minutes later, a denial text came. I was still on the phone with the service navigator who helped me file the request. She immediately said to me, “Oh, I thought that would happen; it’s the name of the medication.” 

So a computer decided. A keyword gave me an instant denial and instructions to appeal it in writing within 30 days. Then they get between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in healthcare that are killing people every day in this country, all in the name of profit. I would love to say that I won her over, but I didn’t. We are going to have to push harder and lobby more. We are just not there yet with the Senate Finance Committee. What we need are hearings on denials and delayed care. 

I met up with New York City Retirees fighting to keep their traditional Medicare. They are fighting against being forced into a Medicare (Dis)Advantage plan. Our story gives them ammunition and firsthand knowledge of Medicare (Dis)Advantage plans. We had lunch together and spoke to each other in small groups. Then off we went, back to meet with more senate staff members to plead our case. 

We gathered in the Senate Hart Building Atrium to celebrate Medicare. We encouraged those around us to realize that we are working to give everyone the same chance for a well-lived life, with access to medical care and medications currently reserved for the rich and elite, some of whom are the very shareholders profiting off of our pain. 

I was able to meet with Senator Shaheen’s staff (she is my Senator.), They were not happy to see me back in their office, telling them how everything I thought I had won last month was pulled out from under me. They truly saw that we are fighting for our very lives. I had help from Senator Hassan, also my Senator, just a week or so before. Now I had a second United States Senator fighting for me.

They understand that we are not looking for privilege, but access to the very care that enables many with CRPS and Small Fiber Neuropathy to live. Simply existing is not living. I walked out feeling very heard and seen. I know that there are a growing number of people on Capitol Hill that now know we exist, and that we vote. We need them to represent us against these for-profit private insurance companies that are reaping billions from the care they choose to deny. 

We all pay into the Medicare system, believing a promise that it’s there for us when we need it. I’m disabled, like many of you. I was forced into the system and didn’t understand what I was looking at. Now, I am stuck on a Medicare (Dis)Advantage plan. Current laws allow insurance companies to hold pre-existing conditions against us, so switching back to traditional Medicare with a Medigap is seemingly impossible. 

The companies collect what we pay into Medicare, and then pocket up to $73 billion dollars per year that should be put back into the Medicare program. This money is the product of overbilling taxpayers. They buy bigger yachts while we ration our care. Can you imagine if that money was invested back into Medicare? Dental, vision, and hearing benefits could exist with no premium increase. Instead, shareholders get profit checks while we get text message denials of life-saving care. 

We sang Happy Birthday to Medicare and spoke of what we wanted for healthcare. Most want nothing more than access. We have these treatments and medications available, but every day people suffer without them, all in the name of the almighty dollar. 

From there we marched to Capitol Hill and it was surreal. Marching and chanting with all these people was mind-blowing. It felt empowering to be among them. My friend Meagan was my handler again. She’s amazing and spends her days fighting for us. She has looked after me now on three trips, and I couldn’t be in better hands. 

I took a conscious moment to take in the sounds of the people chanting and their footfalls on the pavement. It was a beyond-hot day. There was no escaping the heat of the sun, but brief moments of shade from a building or a tree were welcome. 

The vast majority were wearing “Be A Hero” t-shirts, challenging those we passed to do just that, to join our fight. Looking around me, I was surrounded by retired teachers, activists, and first responders representing fire, police, and EMS. Some were even 9/11 first responders, who should be home retired, but instead, they marched with me to fight to keep their traditional Medicare policies, as if they hadn’t sacrificed enough already.

We had a planned press conference that was to last a half hour. I and Megan Bent shared our Medicare (Dis)Advantage stories. We made fast friends and bonded over our painful stories. 

Then something unexpected happens. The few Senators who said they would show up didn’t come alone. Many other Senators and Representatives showed up. All of them vowing to support us and fight against the corporate greed that is killing people in America every day by denying and delaying care. 

I stepped up to the podium as one of the first speakers. I told the story of cancer leading to CRPS. I started to stumble a couple of times, finding it harder to say the words out loud than when I rehearsed privately.

The press event went on for over an hour! When it was over, one of New York City’s finest came to me and shared their pain. I stood in shock as they shared the death of their own child to suicide due to Complex Regional Pain Syndrome. He was only about 23. I have little doubt in my mind that this is just one among many such stories in NYC. 

Be A Hero “believes that Congress has a responsibility to protect the rights of, and advance health equity for, everyone with Medicare including older adults and people with disabilities on Medicare (Dis)Advantage plans.” I certainly couldn’t agree more. 

What Do You Mean Denied? I Can’t Do My Old Job!

Written by Jeffrey A. Rabin, Esq., for the RSDSA blog.

This is a common question from new clients. Often it is followed by: “The company has gone out of business anyway!” Unfortunately, this is often not meaningful in a Social Security Disability application.

Social Security is considered to be a “total disability” program and whether someone can work is determined by their age, education, work experience, and most important, their Residual Functional Capacity (RFC) determination – that is, what is the most that they can still do in a full time work setting despite their medical problems.

In the Regulations, Social Security has a 5 step analytical process called the “Sequential Evaluation Procedure” which is applied by every decision maker in the system.

The first step asks whether the Claimant is working – if they are not, the analysis goes to Step Two.

Step Two asks whether the medical evidence documents a “severe” impairment – one that at least minimally impacts on work function. For example, high blood pressure is a serious medical problem but does not impact on work function until there is severe end organ damage so it is usually a “non-severe”impairment for SSD purposes.

Assuming there is, then Step Three asks whether the medical proof indicates the medical condition “meets or equals” the Listings of Impairments. This is very severe medical criteria set out for many medical problems. If that is met, disability is awarded.

If not, then Step Four asks what is the Claimant’s RFC, and does that allow for performance of any of the “types of work” that were done in the last 15 years. That does not ask whether the old job is available or whether the Claimant would be hired. It simply asks, can the Claimant “function” at any of the types of jobs performed in the last 15 years. If yes, the case is denied. Therefore, at the outset of filing the application careful consideration needs to be made of all past work in the last 15 years.

If at Step Four it is determined that the Clamant can not perform past relevant work then at Step Five SSA asks: Considering the age, education, work skills and Residual Functional Capacity, are there other jobs this person could do on a full time basis in the national economy? If yes, the application is denied. If no, the benefits will be paid.

The state agencies hire vocational experts at the initial and reconsideration level to give reports on the kinds of jobs a Claimant could perform considering their medical limitations . At hearings many Judges hire vocational experts to testify as to the existence of other jobs the Claimant can perform given their RFC and the other factors. This testimony, and the cross-examination of these “experts” often decide whether an application will be approved.

Social Security has some guidelines that help – these are called the “Grid Regulations” and they guide decision makers in the application of RFC, age and education issues.

For example, if an ALJ finds that a Claimant older than 55 cannot perform past relevant work, has no transferable skills, less than a GED education, and has a RFC for light work, that person is disabled under the Grid. However, if that same person has a high school degree and can perform light work, their application is denied.

If you change the facts to state that at most this person can do is sedentary work then benefits are awarded. But, if that same person has transferable skills to other sedentary jobs then the application is denied.

The point of these examples is to show that these determinations are complex and that simply the inability to do past work does not mean that benefit will be awarded.

Want to learn more? Our in-service sessions on Social Security Disability benefits usually qualify for Free CEU credits for staff that attend. Give us a call and get on our calendar for a free in-service at your location, or on Zoom, soon.

Prepared by Jeffrey Rabin, Esq.
Jeffrey A. Rabin & Associates, Ltd.
2604 Dempster St. Suite 508
Park Ridge, IL 60068
847-299-0008
[email protected]

I’m a Young Male Adult and Although Disabled, I Don’t Look It

Written by a 2023 Young Adult Weekend Retreat attendee for the RSDSA blog.

Complex Regional Pain Syndrome affects every part of one’s life. The constant pain you are in restricts you from enjoying life. Aside from the pain you are in, your social life will ultimately be affected. I recently learned that CRPS is generally found in women. 85 percent of cases to be exact. I fall in the less prevalent 15 percent category of men with CRPS.

Men and women can both have CRPS, but our experiences with this condition are not entirely the same. Men are taught from a young age to be the “tough” guy. We are told to be the “man” of the house. Whenever I am on an airplane, I am usually asked if I can lift someone’s luggage into the overhead bin. It is usually a woman that asks me to help them out with their heavy suitcase. In these cases I feel somewhat defeated. Can I lift the bag for them? Sure, I am physically able, but it will definitely hurt. I feel uncomfortable in these situations as I do not feel like explaining myself to a total stranger.

I recently attended RSDSA’s Young Adult Weekend Retreat in Philadelphia. I had a great time, but I was the only male in attendance. I know that men are the minority when it comes to this diagnosis but I do wonder if men do not show up because they may not want to be vulnerable. Men do not always enjoy talking about their feelings and what is going on in their life. We try to be quiet and just attempt to get through it. This is definitely not a healthy practice as we all need to vent and meeting others who suffer just like you do can be beneficial.

As much as I would like to have someone in my life, it is often difficult to put yourself out there in todays dating world. This condition is scary. Any Google Search will show you that CRPS is nicknamed “the suicide disease.” You want people to understand, however, you don’t necessarily want to tell someone you just met about a condition like this one. But at the same time, you want to be able to talk about it. It is also hard to market yourself when you have not been able to hold a job for the past ten years.

In addition, just hanging out with a woman can be difficult. I live right outside NYC. Usually the women I speak to via dating apps such as Hinge, live in NYC so naturally that is where the dates are. Going to the city and exploring requires so much energy, the thought of it gives me anxiety. But I believe chivalry isn’t dead and a woman should be treated properly. I like opening doors, walking women home, and paying for both of us when we spend time together. Since I am disabled, I live on a fixed income and may not always be able to afford to do all the things I would like to do for someone. It often becomes very easy to feel defeated.

One of the positive outcomes of having a diagnosis of CRPS is that you really learn who your true friends are. I am lucky to have a group of friends who have been there for me through it all. However, I have lost some along the way. In addition, it becomes difficult to make new friends at my age especially in my case. I do not have the energy to form new friendships and being disabled doesn’t exactly allow for me to be out and about so often. I would much rather be home watching television in most scenarios. When I do meet someone, they always ask the question, “So what do you do?” I’m a young male adult and although disabled, I don’t look it. Besides some scars from past surgeries, I look completely healthy. Most men my age are in their prime building their resumes and taking care of their family. This is not the case for me.

The minister at my local religious institution came up to me at the last holiday. He wanted to know if I would be interested in attending his “whisky and wisdom” events catered to young male professionals. I have attended a few and I am always very uncomfortable. I am on a great deal of medications and definitely cannot drink whisky. I also do not have so much in common with these young male adults. I have tried to explain my condition but anyone reading this knows how that goes. I have family members who have asked me if my condition could be psychological, let alone strangers who are meeting me for the first time.

There are times where a wheelchair might be needed in social settings. I attended a concert with what I thought was a close friend. I told him about my need for a mobility device. He was apprehensive to the idea and ultimately did not help me out. I was just left to walk with the chair and just sit in random spots when I got tired. I have not spoken to this “close friend” since that night. Obviously this did not make me feel great, but I did learn a lesson. Keep your circle small, but have a few great friends.

Without the ability to work or get out and about, loneliness sets in. Although I do have family and friends to speak to, it’s not the same as having a significant other. I promised myself that I would try to explore the dating scene once again.

I will continue to fight this condition and do my best to raise awareness. I hope that I can one day meet more young male adults. I am forever grateful to the RSDSA for providing resources and hosting their Young Adult Weekend Retreats.

I Want to Help as Many as I Can

Written by Alyce Rowland for the RSDSA blog.

Editor’s note: Alyce is interested in starting a CRPS support group to serve as a resource to ensure that individuals with CRPS do not encounter the struggles she experienced. To contact her, please call (859) 743-8204 or email her as [email protected].

I injured my back in December 1994. I was rushed to the hospital where they thought I had a broken shoulder blade. After several X-rays, they determined that it was not broken. So why was I in so much pain?

They sent me to a sports medicine doctor to have my symptoms evaluated and from there I was preliminary given several diagnoses. After months of medical evaluation, I was then referred to physical therapy where, unfortunately, my condition steadily worsened to where I lost total use of my arm. Then finally after my condition noticeably deteriorated, the primary doctor in the practice said he strongly suspected I had RSD/CRPS based on the symptoms I was presenting.

I was then transferred to a physician that specialized in this field of expertise. Unfortunately, at that time, there were only a few physicians that understood this condition in my area which required me to travel out of state for care. I saw him for a few months and then he disappeared. He reappeared again later only to disappear again. With my condition worsening, it was imperative that I find another doctor fast.

In this year of frustration, I had seen four or five doctors only to be dropped by them all for one reason or another. Due to the lack of treatment, my RSD/CRPS unfortunately migrated to stage 4 and no doctor would see me in my area because it was outside their scope of knowledge. By this time, I have had two blood clots and suffering from a myriad of strange symptoms. 

During the many years of coping with this difficult condition, I have learned through trial and error how the disease functions and how to best manage and/or survive this mysterious disease they say I have. Because at that time, the resources on the Internet regarding this condition were sparse or misleading all together making things just that much more confusing. (As I know now, CRPS is the only condition with the word Complex in it).

Determined to find answers, I wrote letters to doctors all over the United States. Surprisingly, only one will even agree to see me. I had to travel thousands of miles to see this doctor. After careful evaluation, he informed me that my arm is in critical condition. All the doctors up until then wouldn’t even talk about my arm despite its obvious deterioration and deformities. Now it’s four years later and I finally found a doctor that knows about RSD/CRPS. So, I will see this doctor for maybe a year as he is working to save my arm. 

It was at this time; I had made the decision that no one was going to have to go through what I had experienced to find out what RSD/CRPS is. I went into his office one day and I asked him to teach me “the doctor end” of RSD/CRPS. Tell me what it’s doing in my body. Tell me why I’m having so many blood clots. Tell me how it can progress. Tell me what I may look forward to. Teach me everything you can about this disease. It was with this knowledge and passion that I decided to start a support group for RSD/CRPS so I could help others afflicted by this disease so that they can get the compassion and knowledge they deserve. So in Jan. of 2000 with two years of knowledge of the medical end of CRPS/RSD, I started my support group. I talk one on one on the phone or answer emails. I will talk to the nearly diagnosed, newly diagnosed or those who have been fighting this for years. 

I want to help as many as I can to not have to walk down the rough road I had to walk down for many years.  

Alyce Rowland 

RSD/CRPS Support for US and Canada 

“Take Care of Maya” Netflix Documentary Commentary by CRPS Patient

Written by Melissa Wardlaw for the RSDSA blog.

Even before I watched Take Care of Maya, I knew the subject matter. I had read several articles about it, including “People” magazine, which presented Maya’s case as the cover story in June 2023. I was not, however, prepared for the utter shock and horror of what Maya and her family endured in 2017. The documentary left me heartbroken, angry, sad and frankly at a loss for words as I observed just how broken and uneducated our healthcare system is when dealing with rare and complex chronic invisible illnesses and pain. 

Maya, a mere child (9-yrs old when she was diagnosed with CRPS by a world-renowned CRPS Specialist), was in excruciating pain for which her physician ultimately recommended a ketamine coma – which helped! A year later, Maya’s pain came back in full force and she was taken to Johns Hopkins All Children’s Hospital.

In short, Maya’s mother (Beata) was unjustly accused of suffering from Munchausen Syndrome by Proxy (MSP) by a medical director there. MSP is a mental disorder wherein parents (usually the mother) of a child with rare and complex (mostly invisible) diseases either create fake symptoms or cause real symptoms to make it appear that the child is sick.

Yes, that’s right! Despite a CRPS diagnosis from a reputable physician, Beata was falsely accused of medical child abuse of her own daughter; subsequently the hospital “medically kidnapped” and took custody of Maya. Her mother was not allowed to see her and could only speak to her via phone on limited occasions and under strict supervision. Maya’s father Jack (and her brother) were allowed only short visits at the hospital.

After 87 days of Maya being in state custody and Beata fighting for Maya, Beata sadly took her own life to pave the way for her daughter to get back to her father and brother and get the treatment she desperately needed to treat her CRPS. Five days later Maya was returned to her home, albeit without her beloved mother, yet still with CRPS.

Just like Beata on behalf of Maya, most of us who live with CRPS (and other invisible complex chronic illnesses and pain) have been judged unfairly, scrutinized, told the pain is “all in our heads,” given “the look” or been questioned as to how the pain and symptoms can be that bad when we appear relatively “normal” or are able to do such and such a task?

Well, I’m here to tell you the pain of CRPS IS that bad. According to the McGill pain scale, it is the most severe form of chronic pain there is and also known as the “suicide disease.” Like most parents who have children with rare diseases, Beata was simply fighting and advocating for her young daughter who was suffering in unrelenting pain only to be punished for it. What would you do for your child? What, if anything, should Beata have done differently? WHY did this have to happen?

There are too many distressing clips in the film to discuss, however this is for sure – Beata, a nurse by profession, was a fierce advocate and documented everything as we are taught to do living with a complex, rare and misunderstood (mostly invisible) disease with symptoms and pain that defy logic. Her detailed documentation (including recorded phone calls) and exasperation is shown in the documentary and paints a disturbing picture of the manipulative case workers and “medical professionals” who were out to make things even more difficult for this family and for young Maya, who was fighting for her life and needed her mother.

In the final court hearing before her death, Beata asked if she could hug her daughter – a simple request which was denied. Maya would never get that hug and would never see her mother alive again.

As an adult with CRPS (and multiple other medical issues), my mother has been my rock. Throughout my diagnosis and in fact, all these years later, I would not be here without her unwavering support, unconditional love, selfless caregiving and advocacy. The hospital and Dr. Sally Smith, with her false allegations, took something away from Maya that is irreplaceable – a lifetime of mother’s love and compassion. It angers me to my soul for Maya and her family and every family and patient with a complex disease that has had to go through something similar at the hands of power hungry and uneducated physicians, who, instead of fulfilling their Hippocratic Oath to “do no harm,” they in fact do the opposite.

After Maya was released back to her father and brother, Maya’s diagnosis of CRPS was confirmed by a separate CRPS physician. According to reports, Maya still has CRPS and will always have it as it is incurable, although she is doing much better. We can only hope her family now gets the justice they deserve in a $220M lawsuit filed against the hospital (and other parties) set for trial in September 2023. The family has already settled with the accusing physician for $2.5M.

My deepest sympathies and condolences go out to Maya and the Kowalski family. For more information about Maya’s case, please see the “People” magazine article here. For additional information on CRPS please visit: rsds.org. If you are experiencing suicidal thoughts, please contact the Crisis Text Line by calling 988 or texting “START”(741741).

We Will Not Stop Fighting

Written by the Hon. Jenn Coffey for the RSDSA blog.

I want to share with you the work that I am doing and ask you for your help. People with CRPS know all too well the pain of being denied access to medical treatments and medications that could improve our lives. What is grotesque is that often the denial will state, “not approved for the treatment of complex regional pain syndrome.” For the record, the FDA to this date has never approved anything for the treatment of CRPS. That fact is lost on the elected and our neighbors. It’s time to change that. 

I was recently invited to speak in the United States Capital during a Healthcare for All town hall. Gathered on the stage were doctors from various specialties, talking about the struggles to get the care their patients need. Listening to the heartbreak of a pediatrician is sobering. As the patient on the panel, it was my job to paint a picture that the audience could really imagine and understand. For most of those in the room, it was the first time they had heard of Complex Regional Pain Syndrome. Having been led to believe that cancer is the worst pain, there I stood, as evidence to the contrary. 

I spoke about access to care, but also the roadblocks to the very medications that have shown promise, and for some, have changed their lives. My story is like countless others of those who could see a light ahead but had to find a way to buy themselves into care. In my case that has turned out to be ketamine infusions, Low Dose Naltrexone (LDN), and Mestinon, all of which ended my two-year nightmare of being bedbound. Allowing me to function in the world as more of a participant, instead of a viewer of other people’s lives. I have no doubt that hundreds of thousands of people could get their lives back if only they could have these medications. If only they could try a treatment and see if that allows them to have meaningful time with their families, and not be relegated to a bed while watching life go by on a Zoom call. 

I made the decision to go public with my story after sitting in on a meeting about national healthcare. We talked about all the ways that insurance companies deny access to care. There are hoops that they force people to jump through, often leaving them exhausted and unable to navigate the fight. Anytime I have tried to deal with the insurance company, I have always ended up thinking that this person doesn’t know anything about what they’re talking about. All they would do, time and again, was read the booklet to me. As far as understanding what they are reading or how it works in healthcare, that didn’t matter, because the only real point was to find a path to denial of care. Decisions are being made by computers, which in mere seconds can deny care to thousands. 

After nearly 20 years working in medicine, I was fighting to get access to the care I once helped give. America is unique in that we are the only country that attaches our healthcare to our jobs. We all think we have great benefits until we really need them. It was less than two months after my cancer diagnosis that I was out of a job. If I can’t work, I can’t buy health insurance, so now what?

I was lucky to be taken on as a case by People’s Action. This organization disseminated the information throughout the 40 national organizations it represents. We launched the campaign the same day that United Healthcare boasted over eight billion dollars in profit for the first quarter of 2023. That’s just three months. We made videos and I did interviews. The Twitter campaign caught fire. Over 4,000 people signed the petition making it hard for United Healthcare to ignore me. The video was viewed thousands of times and shared. It went up on a Friday, and by Monday, I had a message asking me to contact United Healthcare. They had been successfully shamed into talking to me. 

The one thing that I thought they would never cover, ketamine infusions, was the first approval we won! I am concerned that they will refuse further treatments, but I am sure that they know I will not stay quiet about it either. Now that I know how much work and the hours it takes to get care approved, I’m sharing that with elected officials. They need a clear picture of what we are up against. There would be more appeals filed if people were not intimidated, worn down, and defeated by the process. The private for-profit insurance companies count on it. 

We need to remind people about something. Private for-profit health insurance companies do nothing to increase positive outcomes in medicine. They are the roadblocks, even brick walls, that stand between us and our providers. They are our death panels. It’s time to end the stranglehold they have over all our lives.

Very soon I will travel back to DC, and work with People’s Action to help teach what we have learned, so other organizations can take that knowledge back to their home states, and help more people fight back and win against greedy insurance companies. 

Stay tuned for more videos and more work. We will not stop fighting until everyone, no matter who they are, or where they are from, can access the treatments and medications that their providers use to better and extend their lives. I need you to help fight for those in need, whether it’s signing and sharing a petition, writing to elected officials, or running for office yourself so that you can be the one to bring about healthcare for all.

Please consider making a donation to RSDSA today!

Don’t Allow Someone Else to Minimize Your Journey

Written by Julie Bennett for RSDSA blog.

How and when did you develop CRPS/RSD?

When I was 13 years old I was playing football for an extension out of University of Illinois. They would recruit teens to play for a select team, and then once they started college you would get a full ride scholarship for University of Illinois.

On June 21, 2013 we were playing a football game. I was tackled and landed wrong. The coaches said they heard my hip pop from the other end of the field. The male that tackled me broke two vertebrae in his neck. He now lives in a wheelchair.

My hip ball was fractured, my femur was fractured, the hip joint/pelvis was fractured, and I tore all the ligaments, tendons, and muscles from my left pelvis to my left knee. We were in another state at the time, and did not get home till June 24. By that time I could not sit or walk. I was dragging my leg behind me. My father took me to the ER and after lots of tests I was told everything I listed above. I was told I needed surgery.

However, I choose to not get surgery right away. I hoped to fix it with physical therapy. On Christmas Eve 2013 I went in for emergency surgery, after another fall that completely broke the ball of my hip. The surgery lasted 4.5 hours. I woke up alone in the hospital scared and in pain. I was told in six months I would be back to normal. However this is where things got worse.

Instead of getting better I became worse. The incisions would not heal, the pain way unparalleled. My left leg became cold as if not getting blood flow. I was tested for blood clots, had lots of imaging, and more, but nothing was found wrong. It took three-and-a-half years and seven different doctors, in three different states until I finally found a pain management doctor in Missouri who, after seeing and talking to me for two minutes, diagnosed me with CRPS type 2. 

What has daily life been like since your diagnosis?

From 2013-2015 I spent most of my time in a wheelchair. My left leg was too week and using crutches made the pain worse. After my diagnosis, I went through spinal injection, steriod injections, six hip surgeries, nine spinal surgeries, including a spinal cord stimulator that malfunctioned and was replaced with a dorsal ganglion implant. I am on my second drg implant now.

I spent most of my teen years in hospitals undergoing treatments, tests, experimental treatments. Some of those included being in an induced coma and receiving ketemine, spinal injections, immune suppressant drugs, neurological medications, and more. In 2014, I was diagnosed with childhood endometrial cancer and went through chemotherapy. Since my diagnosis, I have been diagnosed with two blood disorders, Fibermyalgia, a liver disorder, EOG (a stomach disease), my eyesight has began to fail, I get sick easily, I have to walk with a crutch, I have complex sleep apnea, PCOS, endometriosis, and POTS. I spent years in physical therapy and aquatic therapy. I lost my dream of being a Marien, however I did work for the Department of Defense for two years. I’m now retired and on disability at 23.

I spend everyday in excruciating pain. I cannot stand to wear clothing for long periods, I’m sensitive to light, simple tasks are hard for me to achieve, and my short term memory is horrible. I’m in doctors offices or treatments at least three times a week. I have over $7000 in medical debt just for this year and I am on 13 medication and six herbal remedies. I can’t do a lot of activity or exercise. Somedays it’s hard to get out of bed. Life is full of pain, mental and physical.

What is one thing you wish those without CRPS/RSD could understand?

CRPS/RSD is considered an invisible disease, so it’s hard for others to understand how much is effected. CRPS is a neurological disorder that is slowly killing off your neurological system and it effects everything from mood, to ability to walk, to think. It is not something that we want. It’s not a dream or nice to have to be retired at 23 because my body is failing me. 

What advice would you give to newly diagnosed Warriors?

Don’t give up. This journey is hard and does not end, BUT you need to enjoy the little things. Find something to be passionate about. Don’t neglect your mental health. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

When I was first diagnosed CRPS was not taught in medical schools. Most doctors did not know it exists. Now, it is taught in some medical schools, and it is being researched. There is always hope that help or a cure will be found. 

What activities or treatments have helped you find temporary or long term relief?

Marijuana and my DRG implant. They are not perfect but it allows some relief. But most of all, allow your body to rest when it needs it. On good days, do what you can, but never over do it. If you do you are going to feel a lot worse. 

Anything else you would like to add? 

CRPS is a horrible disease. Most people, even with CRPS, don’t understand CRPS fully. Don’t allow someone else to minimize your journey because theirs is not as bad or the same as yours. Every warrior is a warrior.

Connect with Julie on Facebook here.

Please consider making a donation to RSDSA today!

I Wouldn’t Change a Single Day That I’ve Lived

Written by Judy Hopkins for the New Jersey Rare Disease Council.

My journey with CRPS, also known as RSD, began 24 years ago, as a result of a surgery in which a nerve was severed and never repaired. CRPS is a chronic neurologic pain disorder that is the most highly misdiagnosed disease in the US. The pain is commonly described as being doused in gasoline and lit on fire.

For many, including myself, diagnosis comes too late and aggressive treatment even later; that the disease process has spread not only throughout the extremities, but into the organs, causing autonomic dysfunction. This makes treatment options limited and remission even less likely. I’m one of the lucky ones who has known remission.

Thirteen years ago I landed in Germany for what would be my second Ketamine coma. After seven days in a coma, I awoke in complete remission and remained that way for the most amazing four months of my life. It was the first time in nine years that I was able to live my life with no pain, allowing me to ride my bike, play basketball and go dancing. Unfortunately, I found a tumor in my knee, requiring immediate surgery, restarting the disease process that has determined my life for 24 years.

Those four months of remission were the greatest of my life and I know that one day I will live without pain and with a fully functioning body once again, but until then, I go for inpatient treatment every three months and take medication to prevent/control flares. This is life with RSD, it’s not always pretty and it’s a disease that makes most people feel isolated from society, friends and even family. I’m fortunate enough to have the most amazing support system, but most do not. 

When I was about to enter my junior year of college as a theatre major in the theatre and dance department at Montclair State University, I became too sick to continue. After spending 14 years bedridden and/or homebound, I am now in a place where I have been able to complete my undergraduate degree in psychology and will be applying to graduate school in the fall to attain my PsyD in clinical psychology.

CRPS is what is referred to as an invisible disease, most sufferers don’t “look sick” and because of that, are doubted by the ones they should be able to rely on most. It is also an orphan disease and therefore, receives no federal funding. This is why my parents and I set out to raise money for a private organization, Reflex Sympathetic Dystrophy Syndrome Association. They provide education to medical professionals, support for the CRPS community and fund research projects to try to find viable treatments for people suffering from this horrendous disease.

My family and I have hosted a walk in Ocean Township annually for the last four years. We have thus far raised more than $80,000. Awareness is so important when it comes to rare diseases, educating those who know nothing about a debilitating disease that has the highest suicide rate of any chronic illness. I have endured two comas, staph infection, sepsis, 27 operations, years of a bedridden life and more hospitalizations than I could count, and I would never have survived it without my family and friends by my side.

I wouldn’t change a single day that I’ve lived, because it has taught me to treasure the amazing days and not to focus on the tough days. Life is never easy, but for some suffering becomes a normal part of our day. I hope that this counsel will reach all those in our state that are suffering in silence and let them know they are not alone and that there are people out there who believe them and want to help them to keep fighting for the life they deserve. Thank you for your consideration.  

Susie’s Remission Story

Written by Susie for the RSDSA blog.

Hello, my name is Susie. I got diagnosed with CRPS in 2015.

It started in 2012 when I had plantar fascia surgery. It spread to my other foot after a dental procedure. It got so bad that I was in a wheelchair.

I was off work for two years because I was in so much pain. The treatments I did to get into remission are 1000 mg vitamin C daily, laterality training for my brain, sympathetic nerve blocks, Calmare, ketamine infusions, and finally aspinal cord stimulator.

It took me about seven months of reprogramming the spinal cord stimulator and sometimes dealing with increased pain when it was on the wrong settings. Now I charge it up and when the battery dies, I leave it off for a few weeks because the residual effect lasts for me.

I found that I had to get one of the very lowest vibration settings then leave it off for a few weeks until my feet start hurting again then I charge it up.

The pain now is nothing compared to what it was. I think all the treatments that I did contributed a little to me getting better. I use the vitamin C daily to prevent it from spreading.

I’m cautious of procedures and surgery. I’ve researched so much, bought Dr. Katinkas book, listened to numerous YouTube seminars (like the one from Dr. Getson).

I never gave up. I knew remission was possible and once I found out what I had I never stopped. I really want to help people that have CRPS. I work at Kaiser and I educate all the providers on the illness so we can spread the word.

Please consider making a donation to RSDSA today!