Category: RSDS General Info

Written by Maria Martinez for the RSDSA blog.

I am 50 years old and have been married 30 years.  I have a beautiful 27-year-old daughter and a 25-year-old son. They both decided to get married within 6 weeks of each other last year. One gave us a months’ notice and the other 2 days.

As a wife and mother, I could not be happier about their choice of spouses.

I adore my husband and had so many plans for this time in my life.

All those plans were waylaid in 2008 after a cervical mitre.  The neurosurgeon explained that my neck is literally not put together correctly and that these issues were inevitable. The major nerve bundle going to my left arm was crushed.  He would go in and do a “roto rooter” job and create a space for this nerve bundle.

The surgery was a complete success. I regained full function of my left arm which often would just dangle to my side before surgery.

There was a deep ache and pang that just wouldn’t go away in that left arm and into my hand.  He sent me to a pain management (pm) doctor who poo pooed all my concerns by telling me that I was getting close to 40 and that there was arthritis in my hands.

As I had never ever dealt with a chronic issue, I did not know what to say or ask.  I didn’t have any response to her telling me that I couldn’t be in that much pain except to reiterate that I have a super high pain tolerance. I had passed a 5mm kidney stone without feeling it until it was in the bladder. The urologist told me to keep an eye on my body because my body didn’t respond to pain in a normal way.

I worked for two years after surgery with this pain. I was sent for imaging, to physical therapy, and a myriad of interventions that didn’t affect change.

In February of 2010, I was at work when a wave of hot lava like pain swept up from the incision site into my brain. I was instantaneously hysterical in pain. The office staff was going to call an ambulance, but my husband was by happenstance in the area and my pm doctor saw me immediately.

Now she agreed something was horribly wrong and called the neurosurgeon who had done my surgery two years before. His office set an appointment for that same week. By the time I saw him just a few days later my right arm was on fire in worse pain than my left.

I am an inordinately positive person, but I saw by the look in his eyes something was very wrong.

He sent me to a neurologist for tests and for an updated MRI.

He then sent me to a colleague of his that had worked for one of the foremost military hospitals in the United States located in San Antonio. His expertise with wounded warriors who return with or develop CRPS is top notch.  This gentleman had worked as the chief of neurosurgery at this facility.

He leaned his head against the wall and told me two things that would propel me to where I am today. They were “you have to find new normal” and “do your research because you will run into doctors that have no idea about this disease.”

Without all the details and within nine months of seeing him, CRPS had affected both of my legs worse than my arms.  I could barely walk within a year of my diagnosis.

The Light Side of Pain

All the interventions to get me where I am today will be shared as I share The Light Side of Pain.

There is hope, there is life and I hope you will be open to some of my discoveries over these last 10 years.

When writing my thoughts, I define Spirit as the core of a person/the essence of who I am and my core beliefs. Physical light is defined as an electric field tied up with a magnetic field flying through space.

The very nature of Light is to dispel darkness.

It is not hard to listen to Spirit when life is great. As a matter of fact, we often just live our truths without giving it much thought.

Tenacious, outgoing, benevolent, caring, sharing, proactive in education, fitness and personal goals.

I know how strong my spirit is. It took me through a very abusive childhood. There was a spark that always compelled me to believe that something great would happen.

I was able to depend on tenacity to move 2,000 miles from home when I was 20 years old from the Houston area to Denver. I got a job as a nanny from an ad in a newspaper. I moved in with a family I did not know to raise two young children and a brand-new puppy.

There was a fearlessness believing this was a new beginning.

That same Spirit led me to believe I could be a great wife and mother. I was a wife at 21 and a mother to both of my kids at 25.

What abuse couldn’t take from me CRPS began to. It started wearing away at my core.

On April 1^st, 2010 when I received my diagnosis, I came home and put the lyrics from “Across the Universe” by The Beatles as a banner on my computer. The mantra, “Nothing’s gonna change my world,” filled my head day and night.

I wasn’t even prepared for how CRPS was going to change my life. My Spirit was already clamoring for a voice in the experience.

Between 2012 and 2015, I was bedridden and I was incapable of navigating my everyday life. I couldn’t cook, clean, and some days bathe my own body.

My daughter gave up a scholarship at an out-of-state college to live with us for eight years. Karina has crawled into the shower with me and she’s shaved my legs. That made me question all my whys.

My longest stretch of being bedridden was three solid months at the end of 2015. I don’t know how but my Spirit kept a spark and a hope.

I want to share how to fuel a spark to your Spirit. I know we all have one as we are here today despite what it has or will cost us physically.

1. Explore your physical core and and ask Who am I?
2. What do I love?
3. What have I overcome?
4. How do I make this work for me?
5. Muse, meditate, listen to great music, light candles, pray, read inspirational books, watch documentaries. Find ways to define your Spirit.
6. Feed your Spirit and It will guide you.
7. Reignite the Light and this leads us to the Mind part of this process….
   1. Mind-the ability for rational thought
   2. Light-as to enlightennot darkto become aware

I must say that just a few months into my diagnosis rational thought was waning.  Nobody tells us how to live with a disease.

The CRPS Hole

Dr. Wayne Dyer is a favorite speaker.  He shares a story in his presentations about a person walking down the street and they fall into a hole. They continue the same road every day and fall into the same hole until someone rescues them and they learn a new path which doesn’t have that hole.

The CRPS story goes like this. I fall into the same hole because I do not have a map.

I had suffered with CRPS for two years before I was diagnosed. I was completely lost looking up CRPS in the search engine. It was overwhelming; the pain, body changes, career-ending symptoms and nobody to tell me how to live this. By 2012, I was bedridden more than I was not. I would go out one day and be in bed for two weeks.

My longest stretch of living like this was the end of 2015. I was bedridden for three months.

My mind had this dialogue that I was dying. Thank goodness for an excellent primary care physician.  At this time, I was seeing him every three months and in between if needed. His protocol was to do bloodwork a week before seeing me.

Except for my blood pressure being high due to pain, I was healthy. This dialogue in my brain was pain, fear and depression coming together to produce catastrophic thinking.

He periodically has me fill out mental wellness checks. In 2014, he didn’t like what he saw and what my family was telling him.  He gave me a consult to see a therapist.  I chose a Cognitive Behavioral Therapist who in just a few sessions set my thinking into a different mode.

My new thinking was, and to this day is, My Life Needs a Captain!

Internal Power

Before CRPS I was a whole human with all parts of my psyche integrated.

I now am two parts.

I, my rational self, strong minded self, am in control of a very cranky, bratty body that daily has no desire to do anything.

I take a very conscious evaluation every day of what the true situation is pain wise, weather, what my activity level was previously, how close I am to treatments, what I have used in my CRPS toolbox, what I haven’t tried yet and I make those decisions for that day.  Every day is completely different.

I’m sure you have heard the true story of ship and the lighthouse.

The ship saw a blip on their radar and radioed, “Move, I am a military warship.”

The reply was, “You move, I cannot!”

After the blustering captain of the ship continued his stance, the other finally gives him all the information.

“I am a Lighthouse! You must adjust your course!”

Light-as to enlighten, not dark, to become aware.

Each of us will have a different map for this disease. What works for one will not work for another. What I can do is take points of Light from many sources and map my course.

I take that to my executive self, plot a course and I become the navigator for CRPS, not CRPS for my life.

I am the LIGHTHOUSE!

I just refuse to stop enjoying my life

Remember, the body is the vehicle I live in and a Light is a burden that is not heavy, easier to carry than a heavy load.

I saved the body for last because it is still the last to get the memo that I AM GOING TO LIVE DESPITE CRPS.

The neurosurgeon who diagnosed me told me to research this disease as I would sit in front of doctors who knew nothing about this disease. I haven’t been to an ER with CRPS symptoms since the Fall of 2014. Every time I went to the ER my daughter and husband would comment on how computer monitors were lit up with CRPS information because the doctor and nurses were getting a quick overview of a disease they had never heard of.

In doing research I am not unaware of the ravages of this disease. I think it is a horrible disease with complications that are life altering. Knowing this, I just refuse to stop enjoying my life.

I’ve experienced every stage of grief about what my life before CRPS was and what my life after CRPS is now.

I’ve experienced every symptom as CRPS moved from the nerves in my neck into my left arm, mirrored into my right arm, into my legs, my intestines, stomach, bladder and esophagus. CRPS has also affected every bone and piece of cartilage in my skeleton.

So, how in the world do we come to terms with this?

First it is extremely important to build a strong medical team. My PCP, Dr. David Guerrero is responsible for my health. As of my last visit all my numbers are in the healthy range except my cholesterol. We have a plan in place for my next visit in August. My health has improved so much that as of this year, I now see him twice a year instead of three or four times.

I turned 50 in December. He is taking my age and CRPS into account when he looks at my file. He also has a pulse on what my other doctors are saying.

My gastroenterologist has taken care of my gastric issues since 2013.  When I first started seeing him I took in an article about the systemic complications of CRPS and asked him to make it a part of my permanent record. I had highlighted the portion that dealt with my gastric issues. Dr. Alfredo Espinoza had been invaluable in keeping my digestive working so that these issues have not gotten worse.

My final doctor is my pain management doctor. Dr. Ricardo Alvarado has been so amazing at thinking outside the box for his patients.  I have at least 15 friends that I know personally who see Dr. A as he is known to us. He has been invaluable at getting all of us into a healthier way of thinking about CRPS and the options we have for pain management. He and his office fought to get Ketamine infusions paid for when I had been denied for four years. His comment of, “Let us fight for you,” has never left me.

An excellent TEAM for this bad, cranky body is a must.

Despite how CRPS has ravaged this body, I am healthy, I have changed my diet to alleviate pain, I am now able to exercise, and I clean my own house.

I have friends who see neurologists, psychologists, chiropractors, pulmonologists, immunologists and every other specialty there is to manage their CRPS.

If you’re in the same boat, here are a few practical things for you:

1. Keep an ongoing dialogue about the changes CRPS brings and address them accordingly. Ask if you do not know who to see for these.
2. Have a handy toolbox and don’t forget the importance of laughter
3. Have an excellent support system
4. Be kind to yourself
5. Self-care is not selfish
6. Manage emotional energy
7. Decide how you want to use your physical energy
8. Eat healthy
9. Exercise moderately as led by your physicians
10. Find your passions and find ways to live those

Kirsten is a woman in our group who is also a Marine. We’ve all heard of “Semper Fidelis” which mean Always Faithful. Semper Gumby is a term used by the Marines as a tongue in cheek reference because their plans and orders can and do change at any given moment and indicates, “Always Flexible.”

Semper Gumby is a point of Light on our map.

I have CRPS friends who have gone back into their careers after long absences of working, I have friends who have continued to work, I have seen women start a family, I have friends who skydive, write books, a friend just returned from Hungary and Romania after over a week of missions work.

I want to go back to a key point in the first definition of Light.

A strong, supportive, proactive group of peers is needed to do this successfully

I started a public Facebook Page because I could not find anything with San Antonio and CRPS in the same sentence when I started my journey. I started a page just for information.

A group is offered when a public page is made. I made it, but I wasn’t interested in a group.  In 2010, without me adding anyone or making any posts, people started asking questions and somehow, they thought I had an insight. I did more research to try to help in any way I could.

This has led to the best friendships, partnerships, buddies, problem solvers, I’ve ever known.

Alexia Swanepoel and I administrate this beautiful group of people in our Facebook Group.

Together a collective intelligence of educated, proactive, positive people are LIVING with CRPS. I know there is a way of living with this disease because I see it every single day in the posts that are shared.

There is so much laughter, love and life to live.

There is a place of Light living with CRPS!

Written by Lauren Bentley for the RSDSA blog.

As the editor of the RSDSA Newsletter, there are many aspects of the job that I love such as reading about the latest research studies, promoting community awareness events, learning about alternative methods for coping with pain; but perhaps my favorite part is making connections with other members of the RSDSA community and listening to their stories.

I recently had the privilege to interview Eric Moyal, an energetic, enthusiastic young adult who recently earned his masters’ degree and works in fundraising for Brandeis University. He is also the brother of a CRPS Warrior.

Throughout our conversation, there seemed to be one theme that prevailed above everything else: Eric really loves his sister – so much so that he is biking 1,700 miles to raise awareness and research funding for CRPS. No, 1,700 miles is not a typo. Eric will bike from Medford, Massachusetts, where he currently resides, to his hometown of Bay Harbor Islands, Florida. Along the way, he plans to stop in various cities and meet with those who have CRPS, along with their families.  This biking fundraiser is fondly named the “Ride for Warriors.”

Eric first became aware of “the most painful disease known to man” when his younger sister, Anais, was diagnosed with CRPS approximately five years ago. Anais was riding her bike one a November day when she was suddenly hit by a car. She was fifteen years old at the time of her accident. Although the initial trauma of Anais’ accident began to heal, she still felt incredible pain – and that something was still incredibly wrong. It took doctors two years to finally diagnosis Anais with CRPS and, by that time, the disease had already taken a tremendous toll on her body.

When asked what inspired him to create the Ride For Warriors, Eric said, “I really love my sister, we’re like best friends. We talked a lot over the past few years about what she is going through and how hard it is. Part of the struggle isn’t just about getting a diagnosis, it’s convincing yourself that your pain is real when everyone else is telling you nothing is wrong.” He added, “it’s crazy to go through something like this and have nobody believe you. I want to make sure people are aware that CRPS exists.”

As someone who has watched her mother battle CRPS for over a decade, I understand feeling pure helplessness and frustration when there is nothing you can do to take away their pain. During our conversation, we bonded over shared stories of misdiagnosis, doctors’ disbelief of our loved ones’ pain, and the protectiveness felt every time we heard somebody say “but you don’t look sick.” It can be hard to figure out how you can help your loved one when the disease is still relatively unknown to the medical community.

Nevertheless, Eric has a simple, yet tremendously impactful way to support our Warriors – be a source of understanding.  We will never be able to comprehend the level of their pain, but we can offer our understanding when they endure frustrating conversations with doctors,  experience the judgment of others, or just need to go to bed. Anais, now 20 years old, is quite busy being a college student. Although she spends a lot of her free time raising awareness and supporting other college-aged students with CRPS through an organization called Ferocious Fighters, Anais still often experiences a lack of understanding from her peers. Understanding, Eric believes, is something every CRPS Warrior deserves.

The Ride for Warriors is set to kick off on Saturday, June 29th and conclude on July 14th and there are several ways to offer support:

• Follow and share the campaign on Facebook, Instagram, and FirstGiving
• As mentioned, Eric will be stopping in various cities along the way and would love to speak with fellow members of the CRPS community. Reach out and arrange a time to meet Eric along his ride.
• If you have the means, consider offering your home as a place for him to stay. His bike route is included below, for reference.
• There are also financial ways to support this cause – all of which go to furthering research. Pledge 10 cents for every mile that is peddled or ask your local spin studio, business or governmental organizations to serve as sponsors. Any donation, no matter the size, can be made by visiting the Ride for Warriors Giving Page, which can be found here.

Aside from supporting this bike ride specifically, Eric also encourages everyone to share the information they have about CRPS with others, whether that is swapping treatment stories with another Warrior or educating a family member about the disease.

RSDSA is excited to wish Eric, and everyone else working with the Ride for Warriors, the best of luck. But, before Eric hits the road, he has one message for each and every CRPS Warrior: “There IS support and there ARE people out there fighting for you. Keep on being Warriors!”

Ride for Warriors Bike Route

Medford, MA to Hartford, CT…………………….………………………………….. 126 Miles

Hartford, CT to New York, NY …………….…………………………………………127 Miles

New York, NY to Wilmington, MD…. ………………………………………………129 Miles

Wilmington, MD to Washington,DC …….………………………………………….. 118 Miles

Washington, DC to Goochland, VA………………………………………………….. 131 Miles

Goochland, VA to Oxford, NC ………………………………………………………. 120 Miles

Oxford, NC to Carthage NC ………………………………………………………….. 99 Miles

Carthage, NC to Turbeville SC……………………………………………………….. 135 Miles

Turbeville, SC to Ridgeville, SC……………………………………………………… 68 Miles

Ridgeville, SC to Garden City, GA ………………………………………………….. 102 Miles

Garden City, GA to Kingsland, GA …………………………………………………. 122 Miles

Kingsland, GA to Jacksonville Beach, FL ………..…………………………………. 53 Miles

Jacksonville Beach, FL to Daytona Beach, FL………………………………………. 83 Miles

Daytona Beach, FL to Vero Beach, FL……………………………………………… 128 Miles

Vero Beach, FL to West Palm Beach, FL…………………………………………… 71 Miles

West Palm Beach, FL to Bay Harbor Islands, FL…………………………………….. 65 Miles

Please consider making a donation to RSDSA today!

Written by James W. Broatch, MSW, RSDSA Executive Vice President, Director

Three years after the Centers for Disease Control and Prevention (CDC) released its Guidelines for Prescribing Opioids for Chronic Pain, which was intended for primary care providers (PCPs), three of the authors recently wrote an article in the April 24th issue of the New England Journal of Medicine acknowledging untoward consequences related to the misapplication of the Guidelines.

For the past three years, RSDSA’s staff, Board of Directors and I have struggled to help individuals with Complex Regional Pain Syndrome (CRPS) and other chronic pain syndromes deal with the misapplication of the Guidelines.

Individuals on long-standing high-dose opioid therapy, who reported being abandoned by their PCPs or pain specialists, were forced abruptly to taper to a much less efficacious dosage (90 Morphine milligram equivalents or below) or were forcefully tapered from stable medical regimes without regard to withdrawal symptoms.

According to Thomas Kline, MD, PhD, at least 40 individuals have died by suicide due to physician abandonment, being forcefully tapered without patient consent, and then being unable to find an alternative efficacious intervention or medication to treat their unrelenting pain.

Furthermore, insurance companies, state legislatures, pharmacy boards, and chain stores have also created obstacles for access for opioid therapy for people with chronic pain.

If you are having difficulty with your physician regarding your ongoing opioid therapy, RSDSA can provide you with the NEJM article by calling 877-662-7737 or by emailing [email protected]

If you are on Twitter, consider following @RSDSA, @bethdarnall, @ThomasKlineMD, @CIAAG_Lauren, and @LynnRWebsterMD.

Please consider making a donation to RSDSA today!

Written by Wendy Kahn, MD for the RSDSA blog.

I’ve always been very active, at least until one day in the fall of 2000, when I got a stick stuck in my rollerblade when I stood up to start my ride. I decided to have a controlled fall, but the impact on my sacrum turned out to be anything but controlled. During the next three years, I developed multiple cases of pneumonia, until the fifth pulmonologist figured out that I had twisted my spine, kinking one lung. In 2003, a nerve in my left calf became painful, limiting my walking.  My twisting deformity increased steadily until 2005 when suddenly I had such excruciating pain in my legs – first left, then right- that I couldn’t move. You know what that’s like. For once, I don’t have to try to explain.

I saw a neurologist within the week and had the awful studies. I was given too many narcotics too fast, which didn’t control the pain anyway. It took three years, much too long, before a chiropractor finally diagnosed me. I was bedridden, in constant profound pain, often so bad that I couldn’t speak or even maintain consciousness. That’s my 10/10 on the pain scale. Half of my friends and family immediately dropped off the radar, followed by most of the rest in the subsequent years. My daughter couldn’t handle it and left. No one likes pain. Those few that have stayed with me I cherish. My husband, poor guy, was my only support for most of the duration, which is hardly ideal. I hope that your family and friends are more supportive. They can fill your needs and hopefully distract you.

I fought hard all those years to get better, no thanks to the over 100 doctors I saw. None of them helped me, other than to prescribe medications. They all said I would never recover. The first neurologist, years later, had the audacity to tell me, “You should have come in sooner- your RSD could have been successfully treated.” Not one of them could handle my pain as they seemed allergic to it. Some literally drew away from me, while others seemed not to register it at all. No one offered any way out. I tried every available therapy, though I had to find them all myself, sometimes with the help of the RSDSA.

I had to take the helm myself, not easy to do while in such profound pain. If I had not been a doctor and known a little about navigating the system, I am sure I would have killed myself. Ultimately, using a combination of Chiropractic, Low Light Laser Therapy, Gua Sha (Chinese scraping technique), Craniosacral Therapy, massage and acupuncture, I regained my normal anatomic alignment. The impingement on my affected “last” nerve released. Suddenly, my body felt familiar. Since then, I have improved dramatically, regaining bits of my previous life each day. One day I could sit up in bed, then I could walk a little, listen to music, wear socks, crawl into the garden, etc. I recognize my handwriting again.

I’m writing this in the hopes that the messages from my story might help you in your journey. Here is what I have learned:

1. Try to find a way to repair the primary injury site. No doctor I saw thought of this, and I still don’t understand why. It follows a basic tenet of medicine that they seem to have forgotten. Once my anatomic alignment was restored, the nerve impingement let go. That was crucial. All the efforts I made to recover prior to that didn’t advance very far, though they were essential for my survival in other ways.
4. Get the most you can out of every minute, even when you are in severe pain. It will sustain you. Even in my darkest hours for those 13 years, I was grateful for audio books, internet streaming, my own thoughts, and my loyal husband. Distraction can take you out of the pain, even if it’s only for a second or two.
7. Get in touch with your body and believe what it tells you. I used to say, “I rent this space” about my body. I’m much more invested in it now. We work together. It took me a long time to learn how to listen to it, but don’t give up. Move as much as it will let you, maybe even a little more than that.
10. Don’t lose hope. Never lose hope. Alternative medicine can offer a lot, although you have to be careful to pick and choose what works for you. There should be someone to guide you, but I never found anyone myself. Hopefully, you will have more luck. At least contact RSDSA to start. A big issue for me was scar tissue, especially after I developed severe atrophy in my calves. For that, Low Light Laser Therapy and Gua Sha were the most crucial. For my muscle spasms, massage was critical. I couldn’t move without it.

It’s only been a month, so I’m not there yet, but I’m on the way to becoming myself again. It feels amazing, though I’m still holding my breath. Yesterday I spent five hours in the garden, albeit on my hands and knees. My garden is going to be gorgeous this year.

Please consider making a donation to RSDSA today!

Written by Angie Jones for the RSDSA blog.

Four years ago, I was happy, healthy and pain-free. I owned my own business, volunteered in dog rescue, traveled with my family, and enjoyed my life. I had driven three hours to Kansas City and was standing in line when my blood pressure tanked causing me to collapse, spiral downward and was left with an ankle that required reconstruction.

Within days my casted foot had swollen, turned dark purple and felt as if it was on fire. The pain was incredible. Nothing helped. Ice, pain meds, elevation… there was no relief.

Although I shared my concerns with my doctors, they failed to recognize the symptoms of Complex Regional Pain Syndrome (CRPS).

When treated early, many patients go into remission. Sadly, like others, my six-month window had come and gone long before I was diagnosed. I told my cardiologist if he couldn’t tell me what was wrong, I was ready for amputation.

I don’t know what is worse – not knowing what is wrong or being told that you have the most painful disease known to medicine and for which there is no cure.

Eventually, I tried nerve blocks, Lyrica, Gabapentin, Chinese medicine, Calmare, Ketamine infusions, and years of physical therapy. Many of these treatments are not covered by insurance and the benefits, if any, were only temporary.

I had heard about Dr. Katinka van der Merwe and the Neurologic Relief Center in Fayetteville, AR. I decided to reach out for information as I was fearful that my CRPS had spread throughout my body.

I was advised that they do not take insurance and even the best insurance policies refuse to pay for many of the treatments. I knew this was often the case with rare diseases as little is spent on research that will benefit so few. Yes, it terrified me to know I had to withdraw from my IRA when I was on disability. However, what is my future going to be like with a suicide disease?

Anna returned my call and did an excellent job answering my questions. She left me with a sense of hope that I hadn’t felt in a long time.

The first day of treatment, I was overwhelmed by the number of patients in wheelchairs or crutches. I met people from France, Germany, Australia, Sweden, Belgium, etc. The halls were difficult to traverse due to the sheer number of patients and family members.

The staff and fellow patients were incredibly supportive. The patients would spend several hours together each day and then socialize after hours and/or on weekends.

After my first two weeks, I feared I would fail to see improvement and be sent home. As my pain lessened, my worries changed to what happens if I invest all this money and I can’t hold it on my own when I get home. Upon speaking to others, I found these fears to be common.

My physical therapist had warned treatment would be like a roller coaster and she was right. My pain dropped to a point where I was able to quit taking pain medicine but as the weather changed it would spike but never to the point of needing to return to medications.

Eventually, my pain was averaging a mere 1 to 1.5 every day with my foot down and zero elevation, but it took a fellow patient to teach me the importance of trusting the process.

I’d spoken to this woman who’d come in taking each painful step with the aid of a walker on her first day. Within a couple of weeks, she was wearing a Fitbit, counting her steps and walking swiftly without pain. I told her she was looking great and she told me her neurologist didn’t need to see her anymore because she is doing so well. More importantly, she told me that she was no longer planning her farewell party.

Dr. K and her staff are amazing. I witnessed miracles as many patients left in remission and others like me were very, very close.

Am I done? Not yet, but I feel as if I have a future again. I literally experienced the most progress the last two days of my treatment. If I would have had another week or two, I believe that I would be in complete remission. I know that I can and will win this battle with CRPS and so can you.

This blog is not intended to provide advice on personal medical matters or to substitute for consultation with a physician.

Written by Tatum Bunnett for the RSDSA blog.

“Baby steps” has been my motto for half of my life. At the age of nine, I started experiencing intense pain in my feet and lower legs. My doctor discovered that I had a congenital birth disorder in which several of my bones in my feet and ankles were fused together. First, a series of casts were used to non-surgically correct the problem; I spent 12 weeks of my fifth-grade year in a wheelchair with casts on both legs. Unfortunately, as a result of this treatment, I developed Complex Regional Pain Syndrome (CRPS).

It was then determined that I needed a series of surgeries to correct the original foot deformity, but my CRPS had to be controlled before the surgeries could take place. The treatment required my mom and me to move to Palo Alto, California. After being on the waiting list for nine weeks, the Lucile Packard Children’s Hospital pain program finally had a spot for me. This intensive and draining eight-week program required eight hours of therapy each day. The pain was excruciating at times, but I realized the only way to make progress in this daunting process was to set small actionable goals each week, – making baby steps towards my recovery.

Once through the program, it was time to tackle the surgeries. Over the next two years, I had 16 hospital procedures and four major surgeries. Through this (what seemed like a never-ending) cycle of surgery, recovery, surgery, etc., I found there was no other option but to keep taking small steps forward – mentally and physically. To most, being able to walk without assistance isn’t a big step, but for me, this felt like a giant leap. It not only meant that I was on the road to recovery, but I was almost ready to have another surgery and one step closer to being able to go back to my family and life. If I didn’t have a positive attitude and continue my therapies, I would not be able to have the next surgery and would have my pain forever. The memory of the pain is fading; however, what I learned through the process will forever shape my thinking.

After these extremely difficult three and a half years I continued to recover and was able to return to my normal life, I graduated high school and started planning for another life-changing journey, a bike ride across the United States of America with my family. I decided to take a gap year before starting college. I wanted to prove to myself and other people living with CRPS that we could fight through the pain. I also wanted to educate others, fundraise, and bring awareness to CRPS.

Riding across the USA was a massive endeavor, the plan was to ride from San Diego, California to St. Augustine, Florida. We would ride anywhere from 30 to 90 miles a day with varying terrain. Some days we would have thousands of feet of elevation gain and other days the ride would be flat. Before we started the ride I had only been a recreation cyclist, the first road bike I bought was for this trip. I was far from an advanced road biker. The longest ride I had ever done was 30 miles with very little traffic. To say I was genuinely nervous is an understatement! I didn’t know if I could ride the 3,000 miles to St. Augustine, I also was unsure that my feet would be able to take the intense, strenuous activity every day. To pass the time, my dad and I would play goofy games along the way and enjoyed the always changing scenery; from the plants and animals to the smells and the temperatures. I stayed positive and told myself that I just needed to keep making baby steps.

Like I had predicted, parts of the ride were extremely difficult. My hardest day of riding was climbing up 8,828 feet to the top of Emory Pass in New Mexico. After being delayed two days because of the first frost and snow, I was excited to be back on my bike. The climb took most of the day and the whole time I wasn’t sure I could make to the top, especially since I had never done a climb like this before. I knew that the best way to get to the top was to go in my lowest gear and take as long as I needed. Throughout the climb I never felt weak, I felt my self gaining more and more strength.  After several hours of pedaling, we made it to the top and was elated! I felt happy, I was so proud that I had conquered Emory Pass and didn’t give up! I was even happier with the reward of a 20 mile downhill. Riding through these difficult days made me realize that CRPS made me stronger, not weaker! I am now able to see how far I have come, from the days of not being able to walk to proving to myself that CRPS no longer holds me back or owns my life.

Our average daily ride was about 60 miles a day, which allowed us to stop in many rural towns. We met many amazing giving, kind, and genuine people. All of the people we met wanted to hear about my journey and CRPS. People made us dinner, took us to dance halls, and made donations to RSDSA. On several occasions, I was able to share the difficulties of CRPS and talk with them about my journey, after these conversations many people chose to donate and even followed my blog, tatumbunnett.com.

Throughout the ride, I became stronger, more powerful, and my worries about my feet and CRPS slowly started to drift away. I felt energized by the ride and craved exercise. I knew I could make it to Saint Augustine! Unfortunately, on day 44 of the ride in Kinder, Louisiana, my dad had a really bad crash. He was careflighted to a hospital and had to have surgery for several facial lacerations, He is recovering well. At this point, we weren’t able to continue the ride and we decided to come back to finish it at a later time as we only had two weeks left. Although we didn’t make it to Saint Augustine, we rode 2,163 miles through five states. At the start of the ride, I wasn’t sure I could make it across California, but we made it to Louisiana.

I overcame so many personal and physical challenges! I learned never to give up just because something is hard, but to keep fighting and you’ll come out on top. I also learned that CRPS didn’t make me weaker it made me stronger! It taught me how to overcome any challenge by taking baby steps and staying positive. No matter what the challenge, I am confident there will be more, learning to take that first “baby step” is essential.

Please consider making a donation to RSDSA today!

Jeri Krassner is a former NYC gal working for New York City Hemophilia Chapter and is now the Special Events Coordinator for RSDSA! I work for Jim and you. As a fundraiser, that means I ask people for funds, which is hard, but there are two things to remember that make it easy.

1. You are not asking for yourself. You are not asking your family, friends, neighbors and community to help pay your VISA bill or make a car payment.
2. You are asking people to give because you are passionate about the cause, it’s important to you and giving = doing good.

I say when someone gives me any amount from $2,500 to $10 Thank You – you just made the world a better place. You can’t top that, and making the world a better place feels good.

My goal is to help all the RSDSA folks running special events. To help raise awareness, raise more money, build community and confound expectations. Best of all each event will contribute to the RSDSA mission. We all want better treatments and funding research for a cure.

I will leave you with two thoughts – both simple. Would you believe the top reason for not donating is the person was not asked? That’s right no one asked that family member, friend, next door neighbor to donate, so they didn’t.

Second thought – people like giving to people they know. When a family person, friend, neighbor gives to you it’s personal and the impact is meaningful. Hold onto that when you get shy to ask.

Last when out there registering for a walk, race, swim, bike ride, make a team. Be personal and ask your friends, families and neighbors.

• Ask and ask again. People are busy, they got three emails from Best Buy, so they did not see yours. So, ask and then ask again. It takes 3-6 asks to get your yes. And don’t worry they won’t be mad, and you are not putting them on the spot. You are asking them to make the world a better place and who can say no to that?

Contact Jeri at [email protected]

Please consider making a donation to RSDSA today.

Written by Elisa Friedlander for the RSDSA blog.

Hello dear readers! This post below is from an article I wrote a few months ago. It was published in the Inner Peace Column of our local newspaper, the Ashland Tidings. Enjoy, and please pass on! Click here for the link to her article.

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it’s been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, “Great! You can finally be independent!” There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My “response” came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don’t think so.

“I did it myself!” It’s ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we’ve fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?

In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn’t even help myself. If I couldn’t cut my own food at dinner; if I no longer had my work and I wasn’t able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that’s what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf’s mind wasn’t really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they’re meant to become therapists and help people get perspective on their inner-s (elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means–and what it doesn’t. I realized independence isn’t driving to an appointment. That’s convenience. It’s not lifting a bag or walking. That’smobility. It isn’t hearing, or talking. Those are communication modalities.

Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we’re in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.

So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease…something we can all relate to (orwill relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing–always lending a helping hand along the way.