Written by Jon Wells for the RSDSA blog.
Category: RSDS General Info
Review of The Healing Journal: Guided Prompts and Inspiration for Life with Illness
Written by Rebecca Moshay for the RSDSA blog.
Our inner thoughts and the words we choose have a tremendous impact on our outlook on life. I found that as I read through some of the affirmations in The Healing Journal, I couldn’t help but feel uplifted. I even caught myself smiling. At other times they made me a bit emotional because they echoed many of the truths that I had arrived at on my own path to healing over the past decade with CRPS.
The Healing Journal is filled with thoughtfully worded questions that you might hear at a chronic illness support group. It encourages you to challenge your inner thoughts and beliefs about your life, yourself and your future. Doing the inner work by answering the difficult questions and reaffirming positive thoughts sets you up for a very therapeutic experience.
Although you will find lovely floral illustrations throughout, it is not just another “flowery” journal. It is a wonderful resource that serves to support you through the tough days and acknowledge the positives on the better days. The Healing Journal is likely to benefit anyone with chronic illness, and I will recommend it to all of my support group members without hesitation. This beautiful journal just may help you find your way to a healthier outlook as it puts you on a clear path to healing.
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I Try to Be a More Positive Person
Written by Tony Gaburick for the RSDSA blog.
My story began on October 16, 1991. I was at work leaning on my left arm taking a window out of a home. All of a sudden, I got a shot of pain from my left collar bone down my arm and my arm went numb.
After several doctor appointments, I was diagnosed with Thoracic Outlet Syndrome and Reflex Sympathetic Dystrophy (known as Complex Regional Pain Syndrome).
I have had 10 major surgeries to present and three pain pumps plus legions in my spinal cord T6-T7. I have been receiving Brachial Plexus Blocks and Occipital Blocks 2-3 days a week for the past 27 years to stay functional. I also suffer from seizures.
My feelings throughout this process are that I thought I was worse than anyone else. I felt like I was the victim. However, as the days turned into weeks and then months, I opened my eyes to other patients and heard their stories. My outlook changed and now I try to be a more positive person. I began giving talks on “Living In Pain and How To Deal With It.” I also became more in touch with my body as to what I can and cannot do. I cannot drive due to seizures but I am able to help other with chores.
Presently to March 2022, I am still getting injections twice a week. I am continuing my talks and helping people with simple chores to make their lives easier.
If you would like to speak with Tony, please call his cell 570-516-1454 and leave a message that your call is related to CRPS.
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Focus On Small and Simple Successes
Written by Ed McArdle for the RSDSA blog.
My name is Ed McArdle, a recovering chef with bi-lateral hand pain. The letters CRPS, have only recently been added to my diagnosis and so like many of you my new life journey has begun. My life will change, has changed, and a new perspective on HOW to live is now my new focus.
As one can imagine I was constantly using my hands, chopping onions, slicing and dicing every manner of vegetable and meat, opening an array of boxes, cans and bottles, plunging hands into hot water, removing icy things from the freezer, stirring, flipping and whipping creams to a froth. Frying, steaming, blanching, braising and sautéing plate, after plate, after plate. All the while on my feet, knife in hand, day after day, year after year.
Well that was then.. now life for me is a different set of tasks and goals, and a lot of days, I fail miserably at most all of them.
I am not used to accomplishing very little in a day. In fact, it’s one of the hardest changes to accept. The world I came from was fast paced, frantic almost, with success being measured in quantity and quality of food produced and served. Today my world is quite the opposite. I focus on small and simple successes that help make my day a bit easier. I struggle with simple things, opening a zip lock bag, flipping the top off my toothpaste, actually holding my toothbrush (luckily, I can brush with both hands), folding laundry, putting on shoes, buttons and snaps, the dreaded steering wheel and door handles, yes, door handles. I stress at the sight of them, especially the round ones where one has to TWIST and Pull to gain entry somewhere. Usually a doctors office. Hopefully, if I linger long enough without alerting security, someone will either exit or enter and I can block the door with my foot or shoulder and slide inside.
As I navigate my new life I have found that acceptance, not understanding, is a helpful tool to use. I have spent months in darkness, surrounded by stillness and quiet. Pain so unrelenting it clouds thoughts of recovery and leaves a long dark shadow of doubt, despair, and frustration.
I was lost in the sea of questions, how will I live today? How can I pay my bills? Who will want to be with someone like me, who feels that taking a shower today was a huge accomplishment? I was drowning in the questions, trying to understand why, how, what if, why? Why, WHY? Only when I stopped thinking too far ahead, and began to accept my role as the patient, and the Warrior I was to become, did I begin to get a control over my life again.
I am lucky. I know how to cook. I understand the principles of nutrition and healthy eating. Not so long ago, I was feeding and teaching many, many people. Now, I only focus on one. Me. I eat plenty of vegetables, am very fond of long cooking stews filled with beans, vegetables, and bunches of greens. I swapped in fruits for ALL my snacks, reduced portions, cut out most carbs (except for a good crunchy sourdough boule), and STILL I have ballooned in weight due to various kinds of medications and lack of exercise. We are depressed enough, without seeing literally two of me every morning in the mirror. Learn how to cook, take a class or two, if you are into books, get a few cookbooks. There are plenty of videos about healthy eating and cooking, that can start you down a more healthy eating pattern. Use it as a goal, not just to loose weight, but to learn about different spices, foods, and cultures. Get serious about your health, the type of health that you can control and influence. Remember, feeling better starts with feeding better!
I highly suggest some sort of daily exercise. I am the worst at it, so I trick myself into long walks in the woods, that’s enough for me at this moment. I am learning that recovery from this is not as clear cut as some other medical issues. There is no definite timeframe, no concentrated exercises to focus on. For many of us, “working out” takes on a new meaning. For me I took it literally, I needed to get out of my apartment, so I took my “work” (exercise, both physical and mental) outside. This simple task has changed many dark, long shadowed days into a moment of quiet peace, seeing the landscape change from season to season, a bright ray of sun shining on the trunk of a tree, the chatter of young birds as you pass. The small things now are the focus of my mind. This has calmed me greatly, and has added much strength to continue on my warrior path.
For me, as no stranger to chronic pain, accepting my new life pattern has helped me gain a small foothold on this long climb back to a fulfilling life. Be open to the change, accept it, and help yourself out by eating healthy meals and snacks, reducing stress by walks, reading, or hobbies. Be easy on yourself, give yourself plenty of breaks, it is not your fault. Slow down both mentally and physically. Most importantly listen to your body, rest when you need to rest, gather strength whenever and wherever you can, you will need every bit of it as your new warrior path takes shape and guides you to a more fulfilling and rewarding life with CRPS.
Please consider making a donation to RSDSA today!
My Pain Is Not Made Up
Written by Valrie Ricketts for the RSDSA blog.
How and when did you develop CRPS/RSD?
In 2018, I developed CRPS after breaking my left hand during a fall.
What has daily life been like since your diagnosis?
What is one thing you wish those without CRPS/RSD would understand?
What advice would you give to newly diagnosed Warriors?
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
What activities or treatments have helped you find temporary or long term relief?
Anything else you would like to add?
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An Overview of RSD/CRPS
Written and researched by Tracey (Tipton) Morales for the RSDSA blog.
RSD (Reflex Sympathetic Dystrophy), is what I was diagnosed with and was the name used for years. The current name is CRPS (Complex Regional Pain Syndrome), although the name seems to constantly be changing, I have recently heard it referred to as AMPS (Amplified Musculoskeletal Pain Syndrome) and RND (Reflex Neurovascular Dystrophy). Confusing right?
I know, this is probably why there is very little knowledge out there about this disease, especially among medical professionals, and why there is not enough research and no cure. But that subject, the many names of RSD/CRPS, is for another post, on another day. The more information we share about RSD/CRPS the better it will be for all of us with this disease. We all need to continue to educate people, advocate for more Awareness and support one another every day, not just during November.
So what is RSD/CRPS?
RSD/CRPS, nicknamed “The Suicide Disease,” is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The key symptom is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. It most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. It then in some cases, a lot of cases, spreads to other parts of the body. The pain is described as excruciating and burning in most cases.
RSD/CRPS usually occurs as a result of an injury, trauma, or surgery when a sympathetic nerve in the body is damaged in some way. The sympathetic nervous system then malfunctions, going into “overdrive” and making a continuous loop of pain signals that becomes worse and worse over time.
Understanding the Nervous System
There are many nervous systems in the body and they are all connected. Therefore when one becomes damaged others can be affected causing a wide range of symptoms and health problems.
• The CNS (Central Nervous System) controls most functions of the body and mind. It consists of two parts: the brain and the spinal cord. The brain is the center of our thoughts, the interpreter of our external environment, and the origin of control over body movement. The spinal cord carries signals (messages) back and forth between the brain and the peripheral nerves.
• The PNS (Peripheral Nervous System) consists of the nerves and ganglia on the outside of the brain and spinal cord. The main function of the PNS is to connect the central nervous system (CNS) to the limbs and organs, essentially serving as a communication relay going back and forth between the brain and spinal cord with the rest of the body.
• The ANS (Autonomic Nervous System) regulates bodily functions, such as the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response, to which the Sympathetic Nervous System responds to.
• The SNS (Sympathetic Nervous System) is one of the two main divisions of the autonomic nervous system, the other being the parasympathetic nervous system. The SNS produces localized adjustments (such as sweating as a response to an increase in temperature) and reflex adjustments of the cardiovascular system. Under conditions of stress, the entire sympathetic nervous system is activated, producing an immediate widespread response called the fight-or-flight response. This response is characterized by the release of large quantities of epinephrine from the adrenal gland, an increase in heart rate, an increase in cardiac output, skeletal muscle vasodilation, cutaneous (skin) and gastrointestinal vasoconstriction, pupillary dilation, bronchial dilation, and piloerection (goosebumps).
• The PSNS (Parasympathetic Nervous System) affects the heart, lungs, eyes, digestive system and blood vessels. It does the opposite of the sympathetic nervous system and the two nervous systems balance each other’s effects. While the Sympathetic nervous system has “fight or flight” responses, the Parasympathetic nervous system lets the person “rest and digest”.
• The SoNS (Somatic Nervous System) is associated with skeletal muscle voluntary control of body movements. The SoNS consists of afferent nerves and efferent nerves. Afferent nerves are responsible for relaying sensation from the body to the central nervous system (CNS); efferent nerves are responsible for sending out commands from the CNS to the body, stimulating muscle contraction; they include all the non-sensory neurons connected with skeletal muscles and skin.
So what does the Sympathetic Nervous System do and how is it related to RSD/CRPS?
The Sympathetic Nervous System is the system that activates when you are scared, stressed or injured. For instance, when you are walking alone in the dark and you think someone is following you and you get scared it is the Sympathetic Nervous System reacting. It responds by diverting blood flow from the limbs to send the blood to the heart, lungs, and brain so you can think fast, move fast and get to safety. When the crisis is over the SNS shuts off until it is needed again. Stress, worry, trauma or injury can turn this nervous system on as well.
With RSD/CRPS the sympathetic nerve gets damaged or turned on as the result of an injury, trauma, stress or surgery, but the damaged sympathetic nerve remains on. It does NOT shut off the way it is suppose to even though the trauma, event or injury is over and/or healed.
This causes a decrease in blood circulation to the area or areas that are affected, which is usually temporary, but when the sympathetic nerve does not shut off, which is the case in RSD/CRPS, this decreased circulation affects the bones, muscles, tendons, and ligaments in the limb or affected area. The decrease in blood flow makes the affected limb or area cold, giving it a red, blue or purple coloring, or mottling. It can cause changes in the skin, nails and hair. It causes inflammation in the area that the body no longer knows how to respond to, it affects proper movement, and most importantly it causes PAIN.
Is RSD/CRPS painful?
Yes, it is incredibly painful, debilitating in many cases. RSD/CRPS is the most painful condition known to medicine. According to the McGill Pain Scale, which is a scale of rating pain developed at McGill University in 1971, by Ronald Melzack, a Canadian psychologist and professor of psychology, and Warren Torgerson,
a professor of psychology at the Johns Hopkins University who was internationally known for his work in psychological measurement. RSD/CRPS is more painful then natural child birth or even having a digit amputated, without anesthesia. It causes pain to be greater or out of proportion to the injury or trauma. The pain should have stopped when the injury healed but the damaged nerve continues to tell the body it is still in pain.
Can RSD/CRPS spread?
Yes, unfortunately it can. All of our nerves are connected in lines called nerve pathways. Between each nerve is a gate. When the damaged sympathetic nerve stays on it can excite the nerve next to it opening the gate and turning on the next nerve. These nerves can be turned on throughout the entire body, this includes affecting internal organs like the eyes, heart, lungs, stomach, bladder, and other organs in the body. Anywhere the body has a nerve can be affected.
The damaged nerve can cause many sensations other than pain. It can cause stinging, numbness, tingling, coldness, but at the same time making the affected area(s) feel like they are on fire, known as the fire & ice burn. For most people with RSD/CRPS just touching the affected area can make their pain worse. Wearing clothes can make it worse, a hug or being touched can actually be painful, changes in the weather can make the pain worse, sitting, walking, and even laying down can be painful for most. Those are just some of the physical symptoms caused, there are a whole slew of other physical, psychological and emotional symptoms that come with this disease.
What are the symptoms of RSD/CRPS?
RSD/CRPS invariably involves the internal organs, usually the skin surface is cold at the expense of increased circulation to the internal organs. This increased circulation can cause osteoporosis, fractures of bone, abdominal cramps, diarrhea, disturbance of absorption of foods with resultant weight loss, water retention with aggravation of headaches, persistent nausea and vomiting, as well as severe vascular headaches often mistaken for “cluster headaches”. Other symptoms can include depression, brain fog, anxiety, insomnia, anger, weight loss, weight gain, sleep disturbances, migraines, itching, swelling, full body spasms, GI issues, throbbing pain, sensitivity to touch or cold, changes in skin temperature — alternating between sweaty and cold, changes in skin texture and appearance — making the skin thin or appear shiny, muscle spasms, tremors, weakness and atrophy in both muscle and skin, decreased motion, allodynia, burns or blisters…. the list never ends…
In addition, RSD/CRPS can cause the complication of intractable hypertension. RSD/CRPS can cause attacks of irregular or fast heart beat, chest pain, coronary artery spasm (angina), as well as disturbance of function of other internal organs. A few examples are frequency and urgency of urination, respiratory disturbance such as dyspnea (labored breathing) and apneic attacks, and attacks of severe abdominal pain.
It can cause inflammation of the ovaries, uterus or small bowel.
Attacks of fluctuating blood pressure may also be accompanied by constriction of the blood vessels to the kidney resulting in periodic bleeding in the urine as well.
Attacks of swelling of the internal organs complicated by intermittent constriction of the blood vessels to different organs can result in chest pain, attacks of sharp central pain (stabbing severe pain in the chest or abdomen), and changes in voice (suddenly developing a temporary “chipmunk” type of voice change). It can also cause hypersensitivity to sounds, smell and aversion to taste of certain foods.
All of these symptoms, physical, psychological and emotional can cause the pain to become exacerbated. It can be a constant circle of neverending pain and emotions that can take a toll on a person and affect their health in many ways.
Our symptoms can change from day to day with this disease, so if we are up one day and down the next, it is just another down side of this disease.
Is there a cure?
There is NO CURE for RSD/CRPS. Some people are able to reach remission, in which they are able to shut the nerve off again, but it is not a cure and sometimes only lasts for a short time, months, sometimes years if they are lucky. Most with this disorder never get into remission, unfortunately.
Are there treatments?
Most Doctors treat it with medications. While some of the medications they suggest can have horrible side effects or are not helpful, many do have success with them helping to reduce the pain and/or symptoms. However, the relief is usually short lived in most cases and changes in medication or increases in dosage and strength often have to be made. Physical therapy and/or water therapy can be helpful but should be done with a therapist that is knowledgeable about RSD/CRPS because over exerting or pushing oneself can cause more damage or spreading.
There are also procedures that involve injections of medications and nerve blocks that try to shut the nerves off. Some times they help, more often they do not. Nerve blocks and more importantly physical therapy can help improve the blood circulation calming down the inflammatory affect of RSD/CRPS over the internal organs. Although, the internal organs complication may become aggravated by a traumatic effect of the sympathetic nerve blocks. One such complication is accidental trauma to the kidney with resultant hematuria (blood in urine) and aggravation of hypertension.
There are devices that are surgically implanted to the body that attach to nerves in the spine to try and decrease the pain and shut off the nerves, however, those require an extremely invasive surgery and they too only help a few with this disorder. Many are left in more pain and with more complications than before. There are holistic therapies that can be tried like acupuncture, homeotherapy and Chinese medicine, however they are not usually covered by insurance and it can be difficult to find knowledgeable practitioners. Ketamine infusions have become more popular and have proven to be effective in reducing pain for many and even helping some to reach remission, but the infusions are not always covered by insurance and can be very expensive. Infusions are normally needed every few months for years in most cases.
There are TENS units, which can cause more pain for some but can help others. A TENS unit helps to block the pain signal, but they can also cause vibrations, zapping or burning that can further aggravate pain. There is also PEMF therapy, which has been proven to reduce inflammation and pain with over 10,000 clinical trials. PEMF therapy actually regenerates damaged cells, nerves, tissue, bone and collagen, reducing inflammation and increasing blood circulation therefore reducing pain at it is source as opposed to simply blocking pain like a TENS unit. With PEMF therapy, there are no reported side affects and you feel nothing, no vibrations, no zapping or burning. PEMF therapy can take time for the full benefits to be felt, but in most cases, like mine, it is well worth the wait. There are different types of PEMF therapy available in Drs offices and for use at home. I have been using a PEMF therapy device since 2017 and it is greatly reduced my pain and allowed me to wean off the pain meds that I was on for 18 years. Unfortunately, PEMF therapy is not usually covered by insurance and can be very expensive depending on the type of device you purchase.
As you can surmise, there is not one treatment that works for everyone, we are all different and respond differently to medications and other treatments.
We desperately need more treatments, more treatments that are covered by insurance and that are more affordable. With all of the medication cutbacks due to the CDC’s opioid epidemic, patients are now being weaned off or cut off completely from their legally prescribed medications that have helped. Medications that they have been on for years successfully with no issues. Good, caring and legitimate doctors are being hounded and arrested by the DOJ for no good reason at all, leaving patients with no where to turn. Trying to find a new Dr is sometimes impossible now because Drs are so afraid to take on new patients with a history of or presently needing opioid pain medication, afraid that the DOJ will be knocking on their door next. Patients are going through horrible, unnecessary withdrawals, dramatic increases in pain and loss of what independence they may have had previously. Unfortunately, they are being left with few choices, one, to suffer, which most do, two, they are forced to turn to illegal street drugs, which is very dangerous, or lastly, to commit suicide, which many have done, due to their pain being so unbearable and having no where to turn to for help, making the nickname “The Suicide Disease” even more true.
For me, it is been an incredible undertaking to make the journey from a vibrantly healthy person to someone with an incurable, progressive disease. I have had 24 years to learn how to navigate this disease, and although I have learned to deal with it and most everything that comes with it, it does not ever go away, and it is always throwing something new at me. It has gotten easier for me thanks to the treatment I found 4.5 years ago, but for almost, every day, every month, every year my pain becomes more difficult than the last.
Unless you have lived this, you can never fully understand all that comes with it… the emotional roller coaster, the changes, the loneliness, the fear, the sorrow, losing your friends because you do not want to be a burden on them because you can not keep up with them, losing family because they cannot “deal” with you being sick, losing who you once were, and having limitations you never dreamed about that cause you to depend on others to do things for you that you easily did for yourself at one time.
Do not judge what you cannot see or fully understand and please do not take even the smallest of things for granted… you can lose them in the blink of an eye.
If you know someone with RSD/CRPS or another “Invisible Illness” please show them compassion, understanding and support. Try to learn more about their illness, ask questions about their illness, or about what you can do to help them, what they may need. Please do not offer advice like, think more positively, or go on a diet and lose weight (our weight has nothing to do with our pain), do not suggest exercise (that will usually cause more pain), do not tell them that it is all in their head (trust me, it is not) and please do not suggest that if we go to church more or pray it will make us better (like we have not prayed for a cure or to make the pain stop, please). Most people with chronic illness have tried just about everything, conventional and non-conventional. We cannot and usually do not just get better.
This, unfortunately, is the new way of life for us. Learning to live with it is enough to deal with every day without having someone tell us we are not doing enough or we are not doing the right things. It is NOT our fault that we are sick and/or in pain, we did not ask for this (no one in their right mind would), we are not faking or exaggerating, we are not being lazy. We are sick, we are in pain, excruciating, debilitating pain.
All we want is to be believed, supported and loved. Show us the same care and compassion that you would show someone with a broken arm or with cancer. Just because you cannot see it or understand it does not mean it is not real.
For all of my Warriors out there: NEVER GIVE UP, STAY STRONG, KEEP FIGHTING, YOU GOT THIS!
There is hope. Keep trying new things, medications and treatments. You never know when that next one will work for you.
I am here for you, always.
Please consider making a donation to RSDSA today!
I Will Help the Unseen Be Heard
Written by Lucy R. for the RSDSA blog.
In the beginning of 2015, I was diagnosed with CRPS after I fractured both of my ankles. I was devastated and taken aback to have not only such a painful condition, but also such a misunderstood and under-researched one as well. My life became unrecognizable compared to what it used to be- I went from being an active social fifth grader to a girl in a wheelchair going to appointments and hospital visits every day.
Thankfully, after months and months of physical and water therapy, I was able to gain my function back to the point where I could walk on my own again. Despite this, my pain was still raging through my body, and even today seven years later I still haven’t lived a second without it.
However, instead of focusing on my pain, I am motivated to make a better life for myself and others who have struggled like I have. I am compelled to share my experiences, not only to educate others about CRPS, but also to represent all who deal with an invisible illness. Chronically With A Cause, is an Instagram page dedicated to building connections, giving support, and raising awareness. I research chronic pain conditions, compose graphic designs with content, and have created this documentary by interviewing chronic pain sufferers.
My symptoms will be the same tomorrow, and most likely the same in a week, a month, and a year from now. I’m at peace with that. I stopped denying how significant pain is in my life and I started making the most out of the circumstances given to me. If somehow there is a miraculous cure for me, my voice will still be used to advocate for those who suffer with any chronic pain–and especially those whose suffering is “invisible.” I will help the unseen be heard, one loud step at a time.
Connect with Lucy on Instagram at @chronicallywithacause.
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I Never Let CRPS Define Me
Written by Gianna Harris for the RSDSA blog.
How and when did you develop CRPS/RSD?
I was diagnosed with CRPS my freshman year of high school about 10 years ago after playing the sport I love, softball. I was at the last practice before our first game, the pitcher threw a pitch that went right for my hand. I did not think anything of it and just brushed it off. About two days later I lost feeling in my hand and half of my arm. It was then I knew something just was not right. After getting an X-ray the doctor casted my hand because it was acting as if it was broken. Within a week the pain was worse which led to getting an MRI. Still nothing was found. After two weeks I got my cast removed and my hand was discolored and swollen, as soon as the doctors looked at it they knew what was wrong. It was that moment and three words that changed my life, “you have CRPS”.
What has daily life been like since your diagnosis?
When I was first diagnosed my daily life looked a little different than the normal 15 year old. For about the first few months I did not really understand as I was still processing what was happening. My friends, family, and classmates had several questions but I was still trying to answer the questions for myself. Soon after I learned that I may walk slower in the halls, I may have to say “no” when asked to do something, and I may not be able to do everything my friends are doing. Although my daily life may have changed, I never stopped being me. I never let CRPS define me.
What is one thing you wish those without CRPS/RSD could understand?
One thing I wish those without CRPS could understand is when I am up to do everything it is not because I do not want to, it is because I am listening to my body. Understanding that my pain may change based on what I am doing, the weather, and just in general. This can affect what I am able to do each day but being understanding is the best thing we can ask for. I would wish those without CRPS to understand that being part of our support team means more than can you imagine.
What advice would you give to newly diagnosed Warriors?
The best advice I would give to someone newly diagnosed is, you are not alone. There are others out there that feel the same way as you and the CRPS community has created so many opportunities for you to connect with individuals alike. Check out different Facebook and Instagram pages. Check the RSDSA website to see if there is a support group local to you. Find what works best for you. No one’s CRPS is the same. Something that may help one Warrior may be different for you.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
“Just keep swimming” – Wise words of Dory from Finding Nemo. There are days you may feel on top of the world and others where you may feel differently. But at the end of the day you are inspirational, you are strong, and you are a Warrior. “God gives the toughest battles to the strongest people.”
What activities or treatments have helped you find temporary or long term relief?
When I was first diagnosed I started with just physical therapy. I then began a more intense physical therapy and also occupational therapy at Children’s Hospital of Philadelphia. My time at CHOP has changed my life into something I never thought would be. When I first got there I could not even move my arm to my ear, but I left being about to do jumping jacks, tie my shoe tighter, and braid my own hair. Because of CHOP, they turned my can’ts into cans.
I also participated in a support group of individuals my age that also experience chronic illnesses. Being able to relate and talk about my condition has helped me grow and realize I am not alone.
About a year and a half ago I changed my lifestyle and decided to begin a vegan diet. I have found that what I am now eating has helped in ways with my energy and inflammation. But I have found a new passion in cooking and baking. The kitchen is my safe place. Trying new vegan recipes is the best therapy that has worked for me. I even created an Instagram to share my love for food with others!
Anything else you would like to add?
My final thoughts are “don’t run out of spoons.” I know this probably sounds weird and confusing, but it all makes sense. I attended a virtual conference last year and the speaker explained the spoons concept. A spoon is your energy. You may start with 10 spoons or maybe eight spoons, that is based on how you feel that day. Everything you do takes a spoon or two. Once you run out of spoons you have to recharge for the next day. When you run out do not be afraid to rest or ask for a break. Rest is important for our bodies. I think the hardest thing for me to remember is that I can do the same thing everyone else my age does but my body will be affected differently. I need more time to rest and recover.
“Our condition is invisible but we are invincible.”
Connect with Gianna on Twitter at @gi_forcee and on Instagram at @giannaharrrisss and @veg__gi.
Please consider making a donation to RSDSA today!
I Have So Much to Be Thankful For
Written by Dr. Lindsey Williams for the RSDSA blog.
Imagine living in fear of losing your ability to live, to have a life. A very wise friend once told me to live life, and always work towards making my dreams come true. Life is about doing what you love. Since recovering from my first experience with Complex Regional Pain Syndrome (CRPS), I have been determined to achieve my dreams.
In the silence and stillness of my mind, the pain sneaks back in. I strive hard to keep busy so that there is no room for pain. Even the slightest tingle, ache, or burning sensation in my foot brings back horrific memories and fear of the unknown. My thoughts race. Do I need to call my pain doctor? Oh God, what if it is coming back? I just cannot do it again. I always carry a bottle of my Gabapentin with me. I never leave home without it just in case. Imagine living every day like this. I am not sharing these things for sympathy or pity. I do not want either, but what I really want is support for people like me who suffer from CRPS and chronic pain.
Many people, including healthcare professionals, do not really understand chronic pain. I have to be perfectly honest, I really did not understand real pain until I went through this. The American Academy of Pain Medicine estimates that a staggering 100 million Americans are suffering from chronic pain.
A rite of passage is defined as an event marking an important stage in someone’s life. My rite of passage was a time of suffering, loneliness, and loss. I lost myself in the medications and pain, and even though I saw my family daily and my friends frequently, I was isolated because no one understood what I was going through. I believe as humans we need something external for people to see to believe that you are “sick.” The thing about chronic pain is that you don’t “look sick,” other than the dark circles and the fake smile. You cannot see or touch chronic pain. What people cannot see are the long-reaching tentacles of this disease whittling away at your spark for life. So many times people asked how I was doing. What can you really say? I am not sure they could have handled or understood the truth. I was exhausted, and my foot was on fire but there were no flames or smoke to be seen. I had become the master of being okay. It is hard for people to understand what they cannot see.
I am surviving with CRPS. I hear people say, “I can’t go on,” “I’ll never be better,” “I just want to die.” At one point in my life I thought about all of those things. I wanted to disarticulate the lower half of my left leg from my body to stop the pain. I am here to tell you that you can survive and that you can be better. I felt like a failure as a wife, mother, friend, and co-worker. I was physically and emotionally ravaged. The CRPS had taken everything from me. I was in rigid denial about my CRPS; for two years I did not want to talk, think, or hear anything about CRPS after I was better. In my mind, it was behind me, but if I talked about it, somehow it would creep back into my life. Eventually, I was able to reconcile my pain, grief, loss, and regret, and understand that my suffering was the price of admission to a meaningful life. The adage “you don’t miss something until it’s gone” is so true. There was a time that I thought I would never be able to walk, work, or have a normal life again. It is not that I needed my experience of suffering, survival, and remission to be a secret. I thought sharing it would give others an unrealistic expectation of recovery, and I feel guilty that I beat the odds.
What was revealed to me through my pain and suffering was the gift of self-awareness and the importance of being present and a part of life. I had been shaped into a tougher version of myself. Twenty months after it all started, I had regained some aspects of control. I would not say recovered because that would indicate completion of my journey, which in fact is untrue, I will be a better version of myself. I learned that I am tougher than I thought. I was at the bottom of the barrel; I climbed out and knocked that barrel over and set it on fire. I will never be that person again.
I am not an expert in all types of chronic pain. However, I am an expert on the survival of CRPS which is also called the suicide disease. CRPS is so different from other types of chronic pain but the general principles are the same, it sucks. I believe with my heart and soul that everything happens for a reason. Looking back now, my entire outlook on life has changed. Things I used to take for granted, I now hold near and dear to my heart. For example, vacuuming my house, going to the grocery store, walking, or being able to help my family. We do not always know why things happen, but I would like to make something good out of what I survived.
The human body is made up of the tiniest living organisms. Those organisms form cells, tissues, organs, and systems. Our body is an amazing machine, even to the finite detail of the sodium-potassium pumps (which still fascinates me) that work within our cells to keep things running smoothly and balanced. Like any machine, sometimes things can be connected incorrectly or mis-fire. Our autonomic nervous system controls all things that happen “automatically” like breathing, digestion, and your heartbeat. It also keeps our sympathetic nervous system, which is your “fight or flight” response in check. It is great that we have the flight or fight response when we need it. It can save your life. Imagine if you had to continually live with the fight or flight response uncontrolled. It would wreak havoc on your mind, body, and soul. For a period of two years, I lived with a malfunction in my nervous system that involved my left foot and leg.
I had what they call an unstable left ankle. For as long as I can remember, I had a fear of falling or twisting my ankle. On multiple occasions, I would just be walking, and my ankle would roll on me. One of the worst falls happened when I was walking on the riverwalk in San Antonio carrying my two-year-old son Jesse and we fell down some stairs. Thankfully he was okay. The fall that changed it all occurred in September of 2012 at an anesthesia conference in Boston. I broke my ankle while on the subway train. Bones heal with time, but sometimes the ligaments, tendons, and nerves that have been repeatedly stretched over time lose their ability to function as designed.
Let me just preface this by saying, when I decide to do something, I do it come hell or high water. I planned, and God laughed. In June of 2013 a co-worker that serves in the Navy Reserves informed me that the Navy was recruiting for pediatric anesthesia providers. I thought this would be an awesome opportunity to serve my country, do a job that I love, and help kids in need. I jumped through all the hoops and all my paperwork was approved. All I had left was to pass the physical exam that involved running. I had already completed a three-month round of P-90X and joined CrossFit prior to knowing about the Navy’s physical requirements. My ankle was hanging in there, but it was more unstable and painful after this last fracture and running was no fun! My ankle had become an inconvenience, it was time to do something about it. I made an appointment with our foot and ankle surgeon. He suggested bracing for a while to see if it would help strengthen the ligaments or at least keep me from twisting or breaking it anymore to avoid surgery. After a few months of daily bracing with no improvement in my ligament’s strength, we decided to go ahead with a surgery called the Brodstrom procedure on my left ankle. I had surgery on May 8th, 2014. Over 40 years, I have lost count on the number of times I had “sprained” my ankle, but each time it was worse than the time before and it took longer and longer to heal. When the surgeon told my husband it was the worst case he had seen, I was not surprised.
On May 22, 2014, I went for my follow-up appointment. The splint removal which involved cutting and removing the soft cotton wrap was tolerable. However, when we got to the suture removal, that was a different story. I could feel every nerve in my foot. It was like they were all screaming in agony at the same time. The pain was unbearable shattering pain. I needed a leather strap and a bottle of whiskey. I thought I might die; my heart was beating so fast, I could not breathe. Just the touch of the medical assistant’s hand on my foot sent me reeling in pain. The problem was I still needed a cast, but I could not stand for anyone to touch my foot and it was very swollen.
Within a few days, the cast had to come off one way or another. I was going to cut it off myself if I could not see the doctor. My toes would be likened to purple Vienna sausages. Even when I was pregnant, my feet were never this swollen. When we finally got the cast removed the vibrations from the cast cutter hit every nerve in my foot sending a million pain signals to my brain. All I could say to myself was “this is not supposed to hurt” and my brain was overwhelmed with emotions and pain; I vomited. I just wanted them to amputate my foot while they were cutting the cast off. You know the feeling when your arm or leg falls asleep and it starts to “wake up”. It is that feeling amplified exponentially while on fire.
I composed myself in time to speak to the doctor. I just could not wrap my head around why this hurt so badly and why my foot was so swollen. You know it is never good when the doctor starts the sentence with “I’m sorry.”
The first time I heard the words Complex Regional Pain Syndrome (CRPS), my first thoughts were, how are we going to stop the pain and what is CRPS?
There are no blood tests for CPRS. It is diagnosed by symptoms. Immediately I began a Google search, and Dr. Google can be terrifying. My doctor suggested that I try Gabapentin to see if it would help with the pain and swelling. Gabapentin or Neurontin is an oral medication used to treat nerve conditions. I was ready to try anything. It had only been a few weeks and I was ready to disarticulate my foot from the rest of my body. Within 45 minutes of taking my first dose of Gabapentin, the pain subsided. We all hate the unknown; not knowing what is wrong with you or a loved one is awful, but the diagnosis of CRPS was one I never thought I would hear. My original dose was 300 mg every six hours. For a few days that stopped the pain but as time went on, we had to increase the dose to the point where it was not working anymore. We determined I had CRPS type II because I had all the classic symptoms. CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. To be completely honest, I had no real idea what CRPS was. I remember hearing about it in anesthesia school, but thankfully we do not see it much in kids. I remember reading all the symptoms associated with CRPS and trying to explain to family, friends, and co-workers what I had. A million things go through your head while you try to comprehend what was happening. My surgeon put in a consult to the pain clinic for me to see if they could help.
I visited the pain clinic for the first time in July 2014. I had no real idea what to expect, but by this point, it had been roughly eight weeks of unrelenting pain and lots of confusion. Self-pity had set in. I asked myself, “How could this happen to me? What did I do to deserve this?” I learned that for CRPS patients, the level of pain is measured as one of the most severe on the McGill University pain scale, higher than childbirth or amputation.
As a nurse anesthesiologist, I took care of other people. I never expected to be the patient. I knew one thing walking into that clinic that I was not going to become a dreaded pain patient that you hear so many people talk about. Our pain doctors are fellowship-trained anesthesiologists in pain management. The plan in my mind was they would give me some medicine, a nerve block, and everything would be great. I had to go back to work and I had life to live so we needed to fix this, and it was that simple, or so I thought.
My personal experience with anesthesia had been limited, until my niece, Sarah had to have surgery for an infection in her chest in early 1999. I was a new mother and my husband was in the Marine Corps. I had not really decided what I wanted to be other than a wife and a mother. I remember very clearly the Certified Registered Nurse Anesthetist (CRNA) that took care of Sarah when she had surgery. He made such an impression on me that I decided to go to nursing school and become a pediatric nurse, but specifically in the intensive care unit (ICU). I became a Pediatric Intensive Care Unit (PICU) Nurse and became specially trained as an Extracorporeal Membrane Oxygenation (ECMO) perfusionist for the PICU team. I learned so much about tragedy and heartbreak in the ICU. It is not something that you ever get used to, but you learn how to compartmentalize. Amongst all the tragedy in the ICU, you also learn about hope, love, and faith. I learned over the six or so years that I was a nurse that there are a million ways our body can turn on itself and just as many ways in which the body can heal itself. In 2008, I left my local children’s hospital to begin my training to become a CRNA. I knew that I wanted to come back to pediatrics once I had completed my training. It is not that I despise taking care of adults, but there is just something about taking care of a child in need that I cannot explain. Just like taking care of adults, it is not for everyone.
Nurse anesthesia school is harsh. The hours of studying, classwork, clinics, projects, and trying to make time for family was the toughest thing we had survived. It was a love/hate relationship for me, as many other CRNAs will tell you. I attended Texas Wesleyan University School of Anesthesia and was taught by one of the greatest anatomy and physiology teachers in the history of the school, Dr. Rod Reinke. His passion for teaching far surpassed any teacher I ever had. With that passion came great expectations of his students, and he expected us to know more things than I ever thought possible. I believe that Dr. Reinke felt a personal responsibility to educate us, knowing that what he taught us could make a difference in life and death for our patients. My graduating class was Dr. Reinke’s last class. He retired the same year I graduated. Anesthesia school taught me about perseverance, compassion, and hard work; these lessons would serve me well later in life. After graduation, we moved to Central Texas in December of 2010 so that I could take a position at the local children’s hospital as a Pediatric Nurse Anesthetist.
The goal of treatment for CRPS is to stop the progression of the disease so that it does not become a long-term condition. This is achieved by having sensory nerve blocks performed. Having needles placed in my spine to numb the sensory portion of my spinal nerve was not something I was planning on doing, but I was willing to try anything. To perform the procedure, I had to lay face down on the table so that they could access my spine. All of this was done without any anesthesia. It was important for me to be awake and able to answer questions during the procedure so that the proper portion of the nerve is located prior to injection. Needle placement is confirmed with an X-ray before injecting the medication which consisted of a steroid and local anesthetic. Everyone was so nice to me. Maybe it was pity, but mostly, I believe they are good people that want to make a difference in someone’s life. The nurse taking care of me could tell I was nervous, and she did a great job distracting me. We talked about kids, jobs, and pets. She was a real comfort to me. Thinking back about how important this moment gave me chills. This one single intervention had the capability to change the course of my disease and my life.
By the second visit to the pain clinic, it was apparent that the CRPS had declared itself and was here to stay. The nerve block was unsuccessful at stopping the progression and crippling pain. Three months had now passed. Eventually, I was able to begin walking on my foot again. I continued to live my life as best as possible. The Navy was on hold. I worked full-time at this point and was able to be active with my family and my dogs.
We bought a black Labrador retriever puppy in September of 2013 and named him Buddy. He and I started obedience training and we developed a close relationship. I also discovered that I love training and spending time with my dogs. I never really had a hobby before. I always loved animals of any kind and I loved being outside hiking or camping. During our obedience training class, they mentioned something about agility classes. Originally, I thought it would be great for my son Zach and Buddy to do it together. Zach did not enjoy it as much as I did, so Buddy and I began our agility journey. In November of 2014, we added two more puppies to our family, two Border Collie brothers named Radar and Pistol. I planned to train them to do agility. I only mention the dogs because along this journey they were my constant companions. Along with my family, they are part of what drives me every day to get out of bed when I was at my worst.
We bought a new house and things were better for me. I was working full time and able to get around pretty well most days. I tried so hard to not let this stupid disease get the best of me. Occasionally, we must be taken down to our lowest point to realize what is important in life, and when we resurface, we are better than before.
By February of 2015, I was on five medications: Gabapentin, Cymbalta, Clonidine, Amitriptyline, and Vicodin. I was losing function in my left leg. I am not sure if it was from the repeated nerve blocks or the CRPS. My pain doctor and I decided to try a spinal cord stimulator. February 10th, 2015, I started the seven-day trial with the spinal cord stimulator. A spinal cord stimulator for CRPS is supposed to trick the brain and break the pain cycle. It has settings that can be changed according to your pain.
I am not sure if it really helped me or I just thought it gave me some control over the CRPS. I like to be in control. Even the smallest measure of control was meaningful to me at this point. A spinal cord stimulator is a permanent implant, so I had to undergo a mental health evaluation. The point of the evaluation is to make sure that you understand that you are going to have something foreign implanted in your body and that you will not go and cut it out yourself. I must say I felt like it was a waste of my time, but I desperately wanted anything that I thought would help me. I passed all the tests, and I was approved for my implant and had it placed on March 10th, 2015. Everything went according to plan during the surgery and recovery was standard. I could not wean off any medications at this point, but we had not added any new ones or increased any doses, so any small victory felt amazing to me.
At the end of June 2015, I noticed when I was walking that I could feel my battery pack moving. I also was having trouble getting a connection to charge it. We soon discovered the battery pack had slipped out of the pocket they placed it in. Dr. B decided to move the battery pack to the other side. Originally it was on the right side, but now they were moving it to the left side, which seemed simple enough. This setback did not fit into my plan at all. I had a house to run, my husband and two busy children to care for, and four dogs. As you can imagine, my work schedule was very crazy. From February to June of 2015 I had now had three surgeries on my back, each of them requiring at least a week’s recovery time before I could return to work. I did return to work but only for a brief time.
By July 2015, I was quickly losing muscle mass in my left calf and I had foot drop in my left foot. The pain from the CRPS was out of control and walking had become a daunting task. I developed an infection in the lymph nodes of my left groin and experienced horrible pain in my left hip. I was running a fever, unable to sleep most nights, and we had to add methadone and antibiotics to my daily regimen of medications. Walking had become such a challenge that I had a pink cane that I used to get around. I was no longer able to work and my second round of “Short Term Disability” started July 10th, 2015. Laying on the bed at the doctor’s office crying was a humbling experience. I look back on it now and wonder if they thought I was crazy, I thought I was crazy. I remember asking them If I could go talk to the psychologist. I felt like my whole world was unraveling and spinning out of control. Before, I had thought all I had was time, but at this point, I needed to talk to someone. It felt good to talk to someone without bias.
With all the medications that I was taking it was not safe for me to drive or work. I had to take medications every four hours to help control the pain, but nothing ever took the pain away. There were more than a few times I considered amputating my left leg just so I could be out of pain. As time passed I became more and more numb to the changes in my personality and personal relationships. 2015 was a big year for our family. We bought a house in early 2015, our first brand new car, and our oldest son graduated high school. Honestly, I do not even remember my son’s graduation. I am thankful for the pictures that others took.
I was still unable to return to work. Even though the infection was better, the pain was awful in my hip, foot, and leg. I wanted so badly to be better. I was not sure how to try harder to be better and I felt trapped in a broken body. My team and I decided it was time to have another surgery on my back to have it removed on August 28th, 2015, just days after this surgery, I developed a huge seroma on my back. A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. This fluid is composed of blood plasma that has seeped out of ruptured small blood vessels and inflammatory fluid produced by the injured and dying cells. The pain I had endured up to this point pales in comparison to the agony I was in at this moment.
It is an unnerving feeling to be in real pain and knows that there is no relief in sight. I was already on methadone and Vicodin and there were not many other options for pain control at this point. I dreaded the walk into the ER that night knowing that I was the chronic pain patient that I vowed I was not going to become. No one starts out as a chronic pain patient and that is not a title that anyone wants. They are an ER doctor’s worst nightmare and I knew that, because chronic pain patients aren’t any fun for anesthesia providers either. My job gave me a different perspective than most people. I remember dragging myself to the emergency room that night and the thought of having to sit in the hard, plastic chairs for hours ringing misery in my head. Let’s be real, we all know that pain patients are judged by others based on what society has said about pain. Society cannot quantify what my pain is any more than it can yours.
By the grace of God, I was treated with respect and empathy by the entire emergency room staff. The kindness they showed me as a chronic pain patient was inconceivable. They saw me, the person inside, and for this, I will be eternally grateful.
From the end of August 2015 until January 2016 was the worst time for me. The pain was awful, and I was so medicated that I could not even have a phone conversation with my best friend. Although I was never pain-free in the attempt to be pain-free I gave up sharpness, vigilance, and liveliness. My world revolved around a brown pill bottle and an alarm clock. The cycle was pain-pill-sleep every four hours. I could not drive, so my son or husband had to drive me everywhere. I could not even go to the grocery store by myself. There are time times where I just do not remember anything. I was a prisoner of CRPS and my house was the jail cell. I mostly sat in my house and watched TV with my dogs or in the backyard. Only a few friends would come to visit and I was grateful for every visit and phone call. My medications were maxed out and I was taking Hydrocodone and Methadone at very high doses. I also started Acupuncture during this time. I was not a believer, but I am now. It helped with the back pain so much. There was a CRPS trial in Austin for a new medication, but I did not get to participate because I was on methadone which really does not make any sense to me. Wouldn’t you think that it would be great if they could help me get off the methadone, to prove that their medication works?
Short term disability lasts six months and by now I was on my second round of STD. By December 2015, I was out of time. It was either long-term disability or get back to work. I was heavily medicated. I would not have been safe to work and take care of patients. Methadone was the first medication that I weaned in hopes of going back to work. My body had a physical dependence on methadone., I was weaned off the methadone in small increments to try and prevent some of the withdrawal symptoms, but every time I took a pill it seemed like it would restart the clock. I took my last methadone pill on December 17th, 2015. Within 24 hours, the withdrawal symptoms began and lasted about a month. I cannot decide which part was the worst, but probably the gastrointestinal issues and cold sweats. I felt so weak to know that a white pill had so much control over my life. There were times I wanted to call and ask for a few more pills. I did not feel strong enough to make it. But after a month of misery, I was finally coming out of a fog and began to regain myself. I was so grateful for every small success.
By January 2016, the CRPS pain was still awful. It was shattering pain, but I was determined to not let it win. Dr. B and Dr. P decided to try another nerve ablation or radiofrequency ablation (RFA) but they decided to add ethanol to the mix and to do three levels after several failed sympathetic nerve blocks. They ablated the nerves in my spine at level L2, L3, L4 with radiofrequency and ethanol on January 29th, 2016. That was the beginning of the end of my sentence. Within a few days, my pain was all but gone. I still had a few tingles from time to time but nothing like it was before.
There are no words that I can say that truly express my gratitude to Dr. B and Dr. P. They would say that they are “just doing their jobs” and they are right, but to me, it means so much more. They gave my children back their mother, and my husband his wife, and my parents their daughter and gave me my life back. They saved my life.
Going back to work was exhausting but I loved every minute of it. I had missed it so much. I started slowly only working a few hours a week until I could get back to 40-hour workweeks. I vowed to myself that I would unite my experiences as a patient and medical practitioner that would honor all that I had been through and be a better practitioner.
I lost about 30% of the calf muscle in my left leg, which made walking a challenge. I would have to lift my leg with my hand to get in and out of the car because it was so weak. However, I was determined to regain all function, and it took about six months to get most of my strength back.
I started weaning myself off ALL the other medications and within a few months, I was only on one medication. I remember the nurse at the pain clinic asking me if I really wanted to wean off the medications, she had never heard anyone say that before. I did not even realize how sedated I was during that time until I was not.
I started to have swelling and pain again in August of 2016 so I had another three-level RFA with ethanol and so far that has lasted me. I still get the occasional tingle and burning pains in my foot and ankle but they do not last. I tell myself that they are not real, and pain will not win. Our body is an amazing machine and mine had a malfunction, but I am in charge, not the CRPS. I have a daily reminder of how precious each step is and how important it is to make every moment count.
My next goal was to lose weight. I tried all my old tricks that used to work, but none of those worked. I even went and talked to the doctor to see if she had any suggestions. We checked my labs and everything was normal. A few weeks went by and I received an email about a program that was offered through Baylor Scott & White called Naturally Slim and I figured what the heck, I will give it a try. I started on October 2nd, 2017 and since then I have lost 55 pounds and I still plan on losing more. I feel better than I have ever felt in my life.
Some of the questions they ask you during that program are What is your why? and Why do you get out of bed every day? This is what inspired me to write this story. Everyone will have a different answer to those questions. I have so many “why’s”: my family, my friends, my dogs, my job, my LIFE. I almost lost all of them to an awful disease that so many people suffer from. I have so much to be thankful for. I do realize that the CRPS can come back at any time, but I do not live in fear of it. I will not let it ruin my life. Not everybody gets a second chance, but I want to make the most of mine.
I now understand how people who have chronic pain and no support system can fall into the darkness of the pills to dull the world around. It was happening to me. There is so much more to chronic pain that is not understood. Chronic pain affects your brain. It changes you. It is easier to take pills and hide, than face the pain. We cannot define the parameters of someone else’s pain. To be honest, once I got back to life I tried to forget about what I went through. I did not want to relive it. Everyone has a story, but I thought no one would want to hear what I have to say. The more I think about it, and with some encouragement from my friend, I decided it is important to share my story even if it only helps one person.
Connect with Dr. Williams via YouTube and Instagram at @lonestarshepherdess.
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You Will Be Found
Written by Shannon Leidig for the RSDSA blog.
Everyone who knows me knows how much I love music (classical as well as Broadway show tunes). Music has always been a huge lifeline for me, even more so the past four years as it rescued me from the pits of hell battling the beast known as RSD/CRPS. Being diagnosed with this during my freshman year of college detoured what I started out majoring in; however, it has been my one steady constant. Today as I was playing with my eight-year-old Bichon, Finian Blue, I was listening to my tunes and this song from Dear Evan Hansen “You will be Found” hit me like a ton of bricks. I have heard this song before; however, today it literally sucker punched me and made me really stop and think that ‘I am not Alone during this battle with RSD/CRPS.
Have you ever felt like nobody was there?
Have you ever felt forgotten in the middle of nowhere?
Have you ever felt like you could disappear?
Like you could fall, and no one would hear?
RSD/CRPS does not care if you are young or old or what stage of life you are in as it will strike you when you least expect it putting you on a slippery sliding slope with what is more downhill than uphill. You feel as though nobody gets it and nobody understands as they all look at you as though you have a bazillion heads. So, you put on a brave face for everyone else and when alone you cry buckets of tears as the pain is so intense even shower water hurts! Family and friends say “I got you” or “I am here all you have to do is ask and I got your back,” yet when push comes to shove you are all alone because nobody GETS IT! Have you ever felt like nobody was there? That no one gave a dang, nobody cared and that you were the only one who felt the way you do? YOU ARE NOT ALONE!
I started thinking, what can I do so other RSD/CRPS Warriors do not have to feel like they are on their own battling yet feeling like you are so beaten down? There are people who care and want to help. All you have to do is reach out and grab hold of their hand, and they will help carry you through!
Then it hit me: I know what I can do to raise awareness so others are not alone. The last four years have shown me how much this is needed. There is much more awareness now than when I was diagnosed 31 years ago, but there is a heck of a long way to go. During one of the darkest times a friend reached out and asked what can we do, and before we knew it, the Orange Train began to board to leave the station. I reached out to a few of my friends who have been there through the good and more so the bad – Allison, Amy and Roz were asked if they would help with awareness – and they said sure thing.
We started meeting by Zoom thanks to COVID. We really wanted to get on the awareness train in 2020 but COVID gave us a whopper of a detour. However, Allison, Amy and Roz never faltered in their steps of support. We started meeting at least once a month (and sometimes two!) to discuss our ideas for what we call Operation Orange. Thanks to RSD/CRPS, there were many times meetings had to be rescheduled and I hated to do that as the three of them work and have families. Were they upset? NOPE as THEY GOT IT! They said, “We are your arms and legs when you feel like you cannot go any longer. We will be your voice when you cannot speak as the pain just grips you.”
Finally, “I have been Found.”
Well, Let that lonely feeling wash away
Maybe there’s a reason to believe you’ll be okay
‘Cause when you don’t feel strong enough to stand
You can reach, reach out your hand
I recall quite vividly the dark and lonely nights sobbing in bed feeling as though I let them and everyone down as my head says go yet my body betrays me yet again as it fights this terrible Painful Beast that just does not stop! However, Allison, Amy and Roz GOT IT. They are here for me no matter what through the good and bad, the pretty and the ugly, the light and the dang dark and dangerous days when thoughts start to drift. It just warms my heart as here is a small group of people who want to do something.
And oh, someone will come running
And I know, they’ll take you home
Even when the dark comes crashing through
When you need a friend to carry you
And when you’re broken on the ground
You will be found
RSD/CRPS impacts every area of your life no matter how fast you try to outrun it. It will grab your mind, your body, your life, the lives of those who matter and mean the world to you. You feel alone, crying alone in the night, wondering WHY. WHY now, WHY this, WHY me? The tears start to flow, and they cannot be stopped. Why can’t someone help me? I need you and where is my Orange Train of people who want to be my arms and legs? Are they genuinely saying this or is it just more BS that I am tired of? I need help! Please are you there to help me?
They were reaching out their hands for me. They were NOT going to let me fall. They were going to carry me through the good and bad, no matter how ugly it got. They were there. . . and I wanted others who battle this beast to know that they are NOT alone. And here comes the Train. I have been found. Reach out your hand we will grab hold and hang tight NOT letting you go!
Out of the shadows
Morning is breaking
And all is new, all is new
It’s filling up the empty
And suddenly I see that
All is new, all is new
You are not alone
You are not alone
We finally planned and had our first Operation Orange Paint Day on July 18, 2021 and almost twenty folks were there. WOW. People were there to support me and those of us who deal with this beast – not only the RSD Warriors but those in our families – who sit by and want to help but do not know how and friends who mean it when they say, “We have found you and we will help you.” We raised almost $700 for RSDSA. We want others to be found and not battle this alone. RSDSA posted our pictures on their Facebook page, and we have found others who want to be a part of our event. Our Orange Train started planning more events and I just want to cry. Finally, we are making a difference. We are finding others who are not alone. We can battle together.
We scheduled another paint day for Sunday, October 24, 2021 and we had generated a lot of interest. It was looking like we were going to have a great turnout for our October event and then people on the RSDSA page started asking where we were located and why they can’t have their own local paint day? The idea started to percolate on doing a virtual event! I talked with Jeri at RSDSA, my Train as well, as our instructor Kathy and we then had a virtual event that brought people from all over the United States together to make a difference by FINDING others, so we are NOT alone as we battle this catastrophic illness!
I am left speechless (which is a rarity for me), but for the first time in a very long time we have people who care. The days are not as dark though there are still a lot of storms and tornados, but for the first time in months I feel the support from so many. 31 years ago when I was diagnosed with RSD/CRPS, there was not much known. We had nowhere to turn and we honestly felt that nobody gave a dang and nobody cared. We have a long LONG way to go, but we are being FOUND!
I want to thank my parents, John and Mary Ann Schildt, as well as Susan, the most amazing sister anyone could ever ask for, my precious fur babies, Finian Blue and Luna, as well as those on the Orange Train, Allison, Amy and Roz, as well as those who are not named but who are part of the Ripple Effect. You all are my heart and I am truly blessed knowing I have been found!
Even when the dark comes crashing through
And you need someone to carry you
When you’re broken on the ground
You will be found
When the sun comes streaming in
Cause you’ll reach up and you’ll rise again
If you only look around
You will be found
Words and Music from “You Will Be Found” from the Broadway Musical ‘Dear Evan Hansen’
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