My CRPS Truth

On the remarkable day before St. Patrick’s Day, 1992, it was overcast and very cold. March had indeed come in like a Lion.

With a pole gripped firmly in each fist, points planted securely on the snow, I carefully picked my line of sight down the hill.

Starting to seesaw, commencing the build up, I leaned decisively into the top of the slope on the count of “ten.”

I shifted my weight forward on “nine,” prophetically committing myself to my trip to the bottom. Headed to the end of the trail, to where destiny awaited me. I then leaned back on “eight.” With a growing anticipation, I transferred expectations from above to below and on a “seven” I dropped forward, soon to be headed downward, sinking lower.

He yelled something as the gusts of wind drowned out his voice making it insignificant. I swayed, inclining my weight up into the grade on “six” and rocking downward on “five.”

I pivoted my direction back into the uphill on “four.”

He gestured urgently at the ground in front of him.

I teetered forward, momentum building, preparing for my descent, tilting lower, moving, shifting toward the bottom on “three.”

Knowing I’d find out what he wanted when I got there, soon enough, with one last shift up, I inclined my backside higher into the bank above on “two.”

With a sudden lunge, I pitched down the rise, exploding with a triumphant burst, plunging out of my imaginary starting-gate and into action, headed down the hill on “one!”

“Wooooooooo… Hoooooooowwweeeeeeeeeeeeeeeeeeeee!” I yelled as I went flying down the hill! “Yiiiipppppeeeeeeeeeeeeeeeeeeee!”

There is nothing I love more than going fast down a hill! Whether on a pair of skis! Oh! and with the exhilaration of the cold air chilling my face! the snow! the wind! oh the fresh cold air! On a bike, or now, in my beloved wheelchair, if I am moving, I am happy.

Growing up in Vermont I learned to ski for only $1 a year. In lieu of lift tickets, my mom would sew a patch on my parka. I got free equipment, and I spent every single Tuesday all day skiing, plus a free session with the Ski School. My first skis were second hand, wooden with metal cable bindings and double-row leather lace-up boots that were a nightmare to get on and off especially with numb frozen fingers. In those days there was an unbelievable amount of snow with little to no trail grooming. In high school I joined the ski team, where, since my local public school had little chance against the fancy, elite private schools, I skied for the sheer fun.

For my descent that day back in March, on the back woods cross-country ski trail, icy from rain the day before, I sped madly forward, rattling over the frozen crust, as I got my first look around the bend at the large butt-sized hole in the middle of my path. Too late to alter course, I headed right for disaster. My ski tip caught an edge, I jerked off balance, flipped wildly into mid air, flying uncontrollably to land on my back, feet high above me as my right foot, ski still attached, rotated slowly, bizarrely in a full 360 like a helicopter blade.

Somehow I was convinced it was really just a sprain until I heard, over four hours later, the ER doc gasp when he saw it. He rushed to the phone and yelled, “Keep the surgeon here! Oh boy! We really need him for this one!”

My first ground breaking experience with the medical world was a surgery I had at six years old for the removal of a benign cyst on my thyroid gland. With nothing to eat or drink since the night before, naturally, when I came to, I asked the nurse for a drink of water. “Oh no, no,” she told me, “nothing for at least another hour.” Being a clever kid I changed my request to a wet paper towel to lay on my forehead, please. Within minutes she brought the wet towel and as soon as her back was turned I squeezed it into my mouth and sucked down the water.

My second visit to an operating room was for the just described accident when I broke my right ankle (please note, right ankle is an important key to this story). I had plenty of accidents growing up, with numerous trips to the emergency room for stitches. In fact, I was pretty used to it. Getting hurt was not the outcome of clumsiness or being accident prone but of being active and pushing the limits, you know, going too fast or too hard. One fact consistent with all of these accidents is that I absolutely never cried. I never showed the pain.

Breaking my ankle was a game changer, initiating me into the “Medical World” as an adult. 

Suddenly I was brought into unexpected awareness of my own body’s fragility and vulnerability paired with almost complete loss of control. Repeated surgeries, three month non-weight-bearing periods in a cast and on crutches, my calf, ankle and foot atrophied, requiring follow-up, grueling PT rehab.

Although my overall health remained robust, my previously unconscious expectation of ongoing bodily, painless, freedom and mobility was challenged. Emergency surgery and the 4 night hospital stay was followed by 3 additional orthopedic surgeries, including placement and later removal of screws and a plate, the growth of a neuroma and its removal, requiring amputation of my sural nerve, followed by problematic healing, and skin necrosis with a long-term open wound to the bone. Crutches lead to a complicated thumb issue called De Quervain’s. All suddenly and unwillingly forced me to become aware of what life is like when one is not “able-bodied.”

With it also came a loss of autonomy and independence.

My baffling feelings of guilt and self blame sent me searching for a “reason” for why it had all happened. This was my first encounter in doubting my sense of individual vigor. I was at a follow up visit with the surgeon who had screwed it back together, when I unexpectedly blurted out, “How did this happen to me?” I was genuinely surprised by his frank statement that “what had happened had happened.” He then said, “there was no reason why” because, he said, “it was an accident.”

Our best teachers come in many guises and when least expected.

Over 30 years later “it’s just an accident” is precisely how I choose to explain the reasons and causes of my life-changing chronic illness, CRPS.

Without a single doubt in my mind I know that having CRPS is an entirely random biological event. It is not my fault that I have CRPS. I am not to blame for being sick or being in pain.

My CRPS is a physical, bodily anomaly, the circumstance of pure chance that is not the result of mental issues, emotional trauma, guilt or a personality flaw!

CRPS, called the most painful condition known to humans, has proven to be the ultimate challenge of my life.

Since then I have gained an uncomfortable but sustainable alliance as I’ve earned a sort-of-negotiated, unasked for but important “membership” into this often unappealing and strange “place.” From the years of mandatory participation, I learned how to get along in this not so easy realm and I have grown increasingly skilled and accustomed to it.

I have undergone a total of 15 major surgeries. Each surgery represents a multitude of other associated medical events.

As a result I know a lot about the surgery process and the entire medical system. I have come to terms with a foreign land, becoming almost one in this once frightening and alien dimension. Now, as an old veteran, I have learned and developed a concise approach and strategy. 

When I must go thereI designate myself as a self-assigned ambassador of good will. I take on the role of a seasoned pro who wishes to show, above all, friendliness. For each event,I have a personal investment to succeed with the people. For me they have become my impetus. My medical care is about the people I meet. After all, they are my “community.”

I have learned how to fit in well in this ultra utilitarian, bare bones place of try-to-show-no-feelings. By relinquishing my control and becoming a plenipotentiaryor type of diplomat, like a John Adams or a Madeleine Albright, coming to negotiate, communicate and parley on behalf of the rest of us.

I have learned that there is no way to actually “control” anything in the medical world. I cannot win at their game, by their rules, where I cannot call the shots. They control everything. This is my strategy to win in the medical system: give up all pretense of control and let go of any pre-conceived notion of a preferred outcome. I now define my experience, not by how they treat me, but how I treat them.

As a self-termed sensitive, feeling and creative person, before I took this approach my medical experiences were mostly very jarring and always very inadequate, if not actually painful emotionally. Usually, at best, it was pretty uncomfortable. Going to the doctor had always been a poor fit for me. But out of necessity, after spending years trying to “get along” with the people and their attitudes, I have established my approach to the typically harsh, confrontational, miss-matched staff I meet. I’ve gradually learned acceptance (dare I say respect) for them. Based on years and my incessantly recurring needs, I have had to learn how to get along. Compromise, strategy and thoughtful consideration have gained for me the right to claim that I can flow relatively seamlessly within it now. I do not come away with any friends, but I usually emerge with my dignity whole.

These days I go to the hospital lab for all my blood work. As I pass into this unglamorous, crowded realm of purpose, I feel calm acceptance with the whiteboard charts showing shifts, lists of responsibilities and duties, stainless steel shelving, carts and windowless purposefulness. I cruise along in my wheelchair, down the back halls without even raising a single hardened, scrub-wearing employee eyebrow. I find comfortable acceptance. Because now, my tiny, shrunken veins require the unfazed, no-drama, well-seasoned hospital staff phlebotomist’s expertise. I show my gratitude and designate their supremacy, overtly. They are used to “much worse” or harder to find veins than mine (they do the babies they tell me) and I know they can always be counted on to get mine done, unfazed, without drama, without complaint. These are the people I’ve learned to love, that I cherish and I depend on. The low paid hard workers who show up day after day to do their thankless jobs of long term commitment. For my sake, I thankfully embrace a very strange affiliation based on my need of them and my dependence on their stalwart dependability and the spirit that gets them to work every day. With good reason I’ve learned to be nice on their terms.

I admire them for their nuts and bolts practicality that they know is required: no matter how many sticks, no matter how many veins, or different employees it takes, or how slowly my blood creeps out, they’ve seen it all before I ever came along and they are committed to getting that tube filled. Affiliation into this side of the medical world comes with admission gained by being very sick, a qualification you cannot fake and something no one asks for. I’m not sure if it’s a good thing, but it’s mine now.

As a baby, my mother said I never cried and through most of my life I was known for toughness and silent, tight-lipped stoicism. 

I grew up in two pretty harsh, extreme opposite environments. Both places required independence and chutzpah as a kid: NYC and then rural Vermont. I rode the city bus on my own to school and back at age 6, and in Vermont I pedaled 3.5 miles of dirt road to go play at a friend’s or take a piano lesson in the village.

I have generally reacted to pain, illness, suffering, hardship, injury and accidents by hiding my feelings and trying to act tough. When the RN yanked out thick metal staples from my tender, bruised and swollen ankle flesh (it happened for every damn one of those surgeries) I remained silent.

I do not like to complain. Given a choice, I will always opt to keep my mouth shut and remain silent. I strive to appear happy, healthy and “normal.” I do not want people to see me suffering and it’s very hard for me to admit pain, and much easier for me to deny it. I have survived by smiling through a long history of extreme physical pain and difficult medical procedures.

At the same time our culture is very uncomfortable with illness and the current trend is to dismiss sickness and disease as someone else’s problem. The focus is to try to explain it “away.” No one wants it, but no one will admit it simply exists.

While there is universal denial about the random, unexplained occurrence of illness, or any required medical need, there is a simultaneous insistence on trying to assign blame and responsibility for it. The tendency is to label sick people as “bad” or to blame the unwell for not “being well” as if this was our choice. This is a sad fact for anyone who is sick, who may use a mobility aid, need narcotic pain medicine, long-term care or assistance or in any way deviates or aberrates from the well-behaved ableist expectations.

Medical care is a requirement for survival, a need, and for those of us living with chronic illness, disease or with other medical needs, this should never be up for debate. We cannot turn our medication on and off and diabetics can’t omit their insulin, disabled and/or, paralyzed people cannot miraculously get up and walk. (Nor should Trans folk ever need to go without hormonal care.) In the United States medical care can and should be an absolute guaranteed right for all.

About 50 years ago, working middle class Americans were sold on the idea of putting the wealthy first. Taxes, unions and any kind of public service program all became evil taboo, aligned with “communism.’’

They made it seem like a good idea to radically cut the costs of caring for the American people in order to further placate the insatiable greed of billionaires. To quote Frank Clemente, Executive Director of Americans for Tax Fairness:

“Teachers, plumbers, firefighters and other working Americans can already pay higher tax rates than billionaires—and that’s just counting the small part of billionaire income that is now taxed. When you include their untaxed wealth growth in the calculation, many billionaires pay almost nothing.”

The false notion exits that if we can feel righteously comfortable and smug over those who need something,who are “different,” we will be better off. The lie is pushed that if the sick and or those who require medical assistance are ultimately at fault for suffering or needing services, then we are magically freed from responsibility. But more importantly we can also pretend that it won’t ever happen to us or our loved ones. In fact, this is a scheme based on the sinister denial of our fears and a plot to turn those in need of care or protection into “others.” Because “otherism” is the new and dangerous trend: it’s the process by which modern society is currently attempting to justify division, greed and selfishness, both overtly and unconsciously, particularly in the United States Congress and the political canvas.

People have been sanctioned to stop caring for each other. We are being conned into accepting a no-questions-asked invitation to live for nothing but the gratification of the politics of narcissism. Modern society has devolved into a plan to "push" certain individuals out of the group to "defend" against the inaccurate notion that we will hurt the group interest. At the same time, any person in a group who does not absolutely conform and remain silent is taught to believe they will be pushed "downward" in rank, status and rights. This leads to a false but simplistic method of discrimination and elimination. Hatred becomes normalized.

Parallels exist between all forms of discrimination (racism, homophobia, anti-Semitism) and ableism. These are not exact equivalents but to my knowledge the history of discrimination coincides with patterns in ableism. With my broken ankle I got a small taste of what life might be like without privilege. I am NOT claiming to know what it’s like to live with life-long inequality but when I was using crutches and I looked up at a flight of stairs as my only entrance into a building I at least felt something new.

My unique experience is that I have actually lived two lives: the first half was the life of relative comfort, ease and privilege as a healthy, able-bodied white woman, and the second as a “deformed, pain ridden, sick cripple” (my chosen words).

A PA once wrote in his notes that I said my CRPS pain felt like “sunburn.” In fact I had told him that my CRPS pain burned like my skin had been peeled off.

Terrible, 24/7 non-stop, raw burning is what distinguishes CRPS pain most. Similar to neuropathic pain, CRPS pain is called intractable, meaning nothing is available to stop it.

CRPS pain is not new. This same specific type of burning pain shows up repeatedly throughout history.

In 9th century Persian medical writings the term “Auojae Asab” or nerve-originated pain is used. Early Islamic medical scholars frequently treated neuropathic pain. Physician Gorgani, also spelled al-Jurjani (c. 1040–1136) , wrote about its occurrence during bloodletting accidents. Considered a type of nerve injury, Haly Abbas, who wrote astutely about neuropathic pain in his The Complete Art of Medicine, (circa 980) used his own intriguing term “moving ant” to describe the creepy, tingling of a limb that ‘falls asleep.” Abbas said “sense(s) like the moving ant or penetrating needle…(are) similar to (a) condition that happens in the foots when anyone sit on them or be compressed by other thing for a long time.”

Amboise Paré, famous surgeon to King Charles IX of France, recorded Charles IX’s persistent burning pain writing that “the King cried out, that he felt a mighty pain" after hitting a nerve, Paré wrapped the wound with turpentine, oil of roses, and egg yolk. 

Dr. Silas Weir Mitchell, a surgeon during the Civil War, came up with the name, "causalgia" by combining the Greek words, heat (kausos) and pain (algos). Calling the burning of causalgia “the most terrible of all the tortures which a nerve wound may inflict” Dr. Mitchell said that “under such torments the most amiable [persons] grow irritable, and the soldier becomes a coward…” He treated patients that the burning made so “nervous and hysterical, relatives supposed [them] to be partially insane.”

Dr. Mitchell used morphine injections and recorded that patients felt relief wearing “loose cotton [clothing and] gloves, which he wet at brief intervals.” When naming it “causalgia” Dr. Mitchell gave CRPS its first official medical term. Causalgia is still used interchangeably today for CRPS. Mitchell was also credited as a partner in developing the important term "phantom limb" to describe the ongoing torment of pain after amputation.

Included among peculiar diagnostic criteria of CRPS, I experience thickening of toe nails, limb discoloration and swelling. Also, because CRPS causes profuse sweating I must change my clothing multiple times, day and night.

My raging pain is not intermittent, there is never a pause. This is a progressive disease too and the pain gets worse rather than better over time. When I think I have felt the worst possible extreme of pain imaginable, I learn to adjust to yet another unbelievable increased pain level because somehow, I just do.

The pain is characterized by severe burning, prickling, random stabs, joint pain and acute aching, all impossible to ignore, keeping me awake nights and driving me nuts by day.

Body temperature irregularities and painfully cold extremities require heating pads on feet and legs and electric blankets 24/7, year round, even in the car. I have tactile perception loss in both hands and feet with numbness, simultaneous painful over-sensitization, and an inaccurate, false sensation of “wetness”. I experience sudden body jerking, especially before falling asleep. I have to keep my feet and legs elevated as much as possible and I wear very thick wool knee-high socks year round, night and day.

Because of CRPS I have delayed stomach emptying (Gastroparesis) and I can digest only a few foods. My other diseases associated with CRPS include: high blood pressure, dysfunctional bowel that requires daily laxatives (Miralax), frequent nausea and GERD, hyponatremia, painful urination, “painsomnia.” I get no more than 2-3 hours sleep in 24 hours, experience brain fog, short term memory loss, lichen planus of the mouth and Hidradenitis Suppurativa on my face. 

When I became desperately sick with untreated CRPS pain I had to swallow my pride and admit my pain. As I began going from doctor to doctor looking for help, a solution and medical explanation, I learned quickly that I was pre-judged and my testimony ignored. I did nothing wrong, yet my honest word was begrudged. The pain I did not want was resented by medical staff and seemed to generate a very deeply annoyed and aggrieved anger and denial. By sitting on the exam tables of a cacophony of cynical medical practitioners I lost more of my dignity and sense of self than any previous trauma had ever inflicted. As they mercilessly examined and cross-examined me they disdainfully dismissed 40 years of active, uncompromised, faultlessly healthy, conscientious living. I adjusted my approach repeatedly, but nothing helped. I came to appointments with careful notes, I rehearsed and practiced statements, but no amount of written or verbal clarity ever resulted in a change.

Over and over, I searched for adequate medical treatment and care in exchange for my honest, humble testimony of horrific pain. But I always came up empty handed. I bargained away my soul for the hope of a tiny scrap of scientific proof, biological reason and a little bit of medical help. I was forced to throw away everything to beg at the feet of these disbelieving mundunugus. I was brutally devastated. I had been morally hurt. I lost my precious self-identity.

As a brave, intelligent and honest person, my extreme pain gave people an inappropriate “advantage” as they took the opportunity to judge and degrade me, to usurp my autonomy and cancel my reality.

Through the distorted and myopic lens of each skeptical doctor my truth was dismissed: trodden under foot, virtually spat upon, mistrusted and doubted. My “real” became highly suspicious under their scrutiny. As I entered their sterile uncaring world, as they looked right through me, I ceased to exist. The daring, proud adventurer, the insatiable explorer, the compassionate teacher, the lover of all humans, the courageous innovator, the daring spirit, “died” in their aseptic world of distrust and disbelief.

Yet CRPS pain isreal. CRPS truth is an inferno of burning pain that cannot be put out, that is screaming its blaring messages to me night and day and will do so as long as I live. These messages will never stop. They do not go away. My truth may be distasteful and inconvenient, but denial does not stop the truth of my pain. My only choice is to learn to live in the body I have and be with the truth that exists while continuing my search for relief until I find it.

I may be ahead of a cure, and I may precede effective treatment, but while others have chosen to look away, I cannot. I am condemned to suffer in the lonely misery and isolation of their denial.

Until CRPS required it, I generally avoided most medications and drugs and I only began using opiod narcotics for my CRPS pain in the last year. I have tried so many miscellaneous drugs (pharmaceutical, off label, homeopathic, herbal and natural) that I’ve lost count. I use or tried analgesics, NSAIDS, acetaminophen and tricyclics, and even nebulous “alternatives,” like custom pharmaceutical blended topicals and many assorted natural remedies. I’ve included doing cognitive-behavioral therapy, relaxation, and pain coping skills training, like yoga breath work and self-hypnosis. I had moderate success with medicinal cannabis for 10 years, until I had to stop when my body underwent a chemical change and the positive results were replaced by agitation.

Among all the available pain treatments I have tried, opioids, while currently taboo, out of favor, unpopular, condemned and judged, remains for me the most effective drug for interrupting my CRPS pain signals.

I’ve tried risky, unpleasant spinal cord injections that never worked, nerve blocks that provided a couple of hours relief only and I have a spinal cord stimulator (SCS) implanted in my body that cost my insurance $100,000, a surgery that posed a risk of spinal infection and lower limb paralysis, and required a year of ineffective trials and treatments just to get qualified. Shortly after this high-tech device was put in me it stopped being effective. Some data states that this stimulator can cause CRPS to spread. After my SCS implant mirror image pain showed up in my right foot, later followed by right hand and arm and then left hand and arm pain; I now have Full Body CRPS.

The exact cause of CRPS is still unknown. Cases can start after extended immobilization of a limb, like time spent in a cast, after an injury, or following a stroke or heart attack. I knew of a woman whose CRPS was caused by a phlebotomist accidently jabbing the needle into her nerve and another from an insect bite.

My own CRPS is likely the result of seven brutal orthopedic surgeries on my left ankle (note, not the right ankle that I broke in 1992). 

When I received my CRPS diagnosis in 2018, information was scanty and limited. In fact, until that moment I had never heard of CRPS. Every year a small increase in information appears on the internet. About a year ago major medical informational websites like Cleveland Clinic, Mayo Clinic and WebMD began posting accurate, informed articles.

CRPS, aptly nicknamed “The Suicide Disease”, is the reason for my own two suicide attempts, the first by overdose (September 2022) and the second when I voluntarily stopped eating and drinking for 14 days, or VSED (January 2023). While difficult to admit, I very intentionally and deliberately attempted suicide twice. I was convinced I wanted to end my life. I was very serious about it. I wanted to die rather than live in a body racked with terrible pain with no treatment and no cure. This was not suicide ideation. This was a carefully thought out, pre-planned decision.  (If I lived in Switzerland I might have applied for Dignitas.) I read extensively about the Death With Dignity Movement and I did detailed research to choose both my methods.

I was absolutely convinced, both times. I had not a single regret. I knew without a doubt the disease was getting worse and without a cure, without medical support, harder times were coming soon. However, I had not reckoned on the fact that the disease I was trying to escape would actually save my life. 

My dysfunctional stomach could not completely digest and absorb the lethal combination I had swallowed the first time. When I came to in ICU, I had to face my own outrage and anger that I was still alive. I was not just misunderstood anymore. I was now in a hospital bed, alive, with massive amounts of drugs involuntarily put into me by IV. Heroic people worked hard around the clock to give me back a life I did not want. I was unable to fall asleep one single hour during the entire 2 weeks I was in that hospital. I could not eat. I ranted and raved, confused, enraged, unable to understand how I got there, what was happening and how I would continue with the unlivable pain that I did not want. I kept yelling that I was supposed to be dead. I maintained an ongoing monologue with myself and the people in attendance, asking how did I get there? I felt I had been horribly betrayed. I learned later that I was rescued when found still gurgling. I had bitten the hand that reached in and moved my tongue away so I would not choke to death. I received CPR until the EMTs came and was touch and go for 6 days in ICU, while I lay in a coma, unwilling and ungrateful. 

When I was taken off the IVs nurses would come around the clock with their elaborate wheeled push carts and little cups filled with the meds that I had no choice but to swallow. Gradually my attitude underwent a change for the better. With each nurse’s visit I became more motivated to cooperate, to please, and to comply. I learned to call out as cheerfully as I could when they entered my room. “Just tell me what I need to do and I’ll do it,” I said, turning up my hands in a gesture of willing submissiveness. 

But on the exciting day I thought I was going home I learned to my horror I was scheduled to go to a psych hospital because, they explained, I tried to kill myself. A hysterical nurse proclaimed that I could not take my wheelchair. She said it was a “weapon.” So were my custom shoes, shoelaces and my knee high wool socks: my life’s essentials were deemed dangerous and forbidden. I was told I could do harm to myself or others with them.

I felt a chilling fear and a terror like none other I had ever known.

I knew if I went to that psych ward without my wheelchair, without my custom shoes and even my wool socks, I would never survive…

…and then I began to see that the physical pain of CRPS might not be the biggest, nor the very worst danger in my life.

I began to fight.

I did not stop fighting that day.

I fought bravely with everything I had.

As I began to fight… I began to see a new, very small ray of hope.

I began trying everything I could possibly think of.

From the landline in my hospital room I started calling.

I began first with the hospital directory.

I spoke with a patient advocate. We scheduled a last minute psych evaluation with an outside agency and after a video session that therapist vouched for my safety and justified letting me go directly home.

At the last possible minute I was released from the requirement to go to psych hospital.

About two weeks after trying to end my life, to my surprise I found my life was worth fighting for. This was who I was, after all, a fighter and a survivor.

I’ve always advocated for confronting my fear as aggressively as possible. Whatever the problem, push through it, has been my motto, and it was again. 

This can be a magical experience, to push through the fear, and onto the other side.

I am not afraid.

I have faced helplessness in the face of intolerable pain.

What else is left to fear? 

I say, bring it on, because I’m ready.

Sure, like everyone, I have known fear, but I know now, I cannot answer its call. I cannot. I will not.

I seek first, a path of how to survive with myself in absolute self-truth and self-acceptance, and second how to help CRPS-me while living among so many people who will and do judge and reject my truth.

About a year ago I read that intrathecal morphine provided documented CRPS relief. I researched and determined this as my goal.

I diligently began the very challenging task of working to convince my wary, reluctant doctors to first prescribe high dose oral narcotics for my CRPS pain (to test their long-term effectiveness) and then second, a pain pump. By meeting with them independently, an rare exception to protocol, I discussed with my neurosurgeon about implanting a pain pump. With this doctor’s support I achieved a surprising success. I triumphed within an unyielding and rigid system to achieve a valid, if unconventional outcome.

One year later my pump is working; while current dosage is not yet up to target level, it is indeed a success. Safety requires very slow procedural titration to bring it up to full dose as the risks of morphine going directly into my spinal fluid can be lethal. Likely it may take almost a year for it to operate at full dose. 

There is no silver bullet here. There never will be.

I have had to learn the compromises of living with chronic illness and pain that at best could go into remission and or, be well managed, but for which there is no total solution.

So far there is not a way to completely shut the pain off, and there likely never will. My hope is to achieve a moderate amount of relief that allows me to live in relative comfort.

I do not expect a miracle but I do have the goal of an acceptable livable pain level. 

On this journey I have learned a lot about myself. I’ve come to know that as someone who instinctively wants to hide my pain and suffering, who just wants to push past the pain and win at all the challenges by smiling through them, I need help. The Gordian Knot of my life has been to admit and describe accurately to doctors and others the extreme pain I feel.  

I have no choice about the messages that my body sends to me.

I’ve learned the hard truth of telling the truth, speaking the truth, and living my truth no matter what, with or without anyone else’s approval.

There are those who may not like my truth, there are those who may try to deny my truth, but I cannot do that. And I will not.

Yes, my life is a big compromise. Several times a day or more the pain becomes unbearable and I’m not sure what to do. My days are dominated by pain, suffering and illness, but I am alive. I’m still growing and learning and I keep trying. For me, that’s enough.

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There is something far more difficult about living with CRPS than the pain.

The fact is that we who live with the terrible disease of CRPS are simply not believed.

This is a heartbreaking and devastating fact.

The pain we suffer is very bad, but to live with CRPS pain (or any truth) and to not be believed is a much worse fate and creates additional, compounded trauma.

The very worst part about having CRPS is the fact that the extreme pain is not validated.

Cultural acceptance about the truth of CRPS is long overdue.

The worst possible thing imaginable as a human being is to not be believed.

To suffer without compassion, to live with untreated pain, to be judged and to be abandoned without help really S U C K S.

But attitude, a point of view, opinion, a feeling, belief, none these determine reality. My qualifications for treatment, in the end, are based on my own self-determination. And my willingness to fight.

“Being believed” does not matter after all, but documented, factual medical data does. Evidence has the last word. 

My survival is dependent on my own admission of the truth of this disease: the CRPS Truth.