A year ago a few days before Thanksgiving, my CRPS decided that it was time to travel from below my knee up to my hip bone.
It started that Monday, that familiar burn and deep ache. I didn’t want to believe it was happening, there was no injury, no reason for my brain to decide that my upper leg was now ALSO “injured”. I spent that Thanksgiving Thursday struggling to even talk to my family, it was so hard to concentrate on what they were even saying. Hands slightly shaking to take extra pain meds, body continually shifting in my wheelchair to try and find a comfortable position. I did my best to put on “a show” for everyone visiting but it was challenging.
The flare meant mirror pain in my right hip and the burn even began to go up my back. I felt incredibly alone and equally scared. Every time it has spread it just feels SO overwhelming and hard to adjust to having more of my body “taken from me”
That Sunday afternoon after Thanksgiving, Sean and I traveled up to my pain dr’s office where for the next 2 weeks I became a guinea pig. DR. Kaplan wanted to possibly buy a Calmare machine so several of his patients who have severe nerve pain were chosen to see if it would bring relief or even remission. It was free and a treatment I had considered before, it felt like a possible lucky break. The research seemed hopeful and the 8 months of IVIG wasn’t getting me ANY kind of relief from my CRPS.
You can imagine my hope going into this, especially dealing with this new spread. I was almost a year into my CRPS going from moderate to severe. I was 4 years in to CRPS and struggling with my new identity as a disabled woman. I was ravenous for relief, hands reached out and grasping at the air. My nerve conduction studies and brain scans kept worsening, the CRPS spread and spread and spread. If the 2 weeks of Calmare sessions didn’t give me complete relief, I hoped it could at least reverse the spread and at least get my pain a bit lower.
I needed some hope. I needed some relief. I needed something to believe in.
Sadly the Calmare machine didn’t give me anything except an even angrier nervous system. Having the electrodes placed all over my lower body and being touched FAR more than I was used to seemed to just upset my body more. They were able to get the pain in my pinky toe down to a 6 but otherwise I felt so very little relief.
Though my dr and I met at the end of that 2 weeks and decided I needed to quit IVIG, not try more Calmare, and go ahead with ketamine infusions…I just felt like I was a hopeless case.
Having yet ANOTHER treatment not work crushed me in a way I knew would happen but tried so very hard to avoid. I started 2016 worrying that I was running out of options and trying to find a way to make peace with possibly being in severe disabling pain for many years ahead.
Chances are if you are chronically ill and reading this, you know the familiar and very bitter heartbreak of when a treatment doesn’t work. Being sick can be such a roller coaster of emotions between the sadness, the challenges, the grief, and the anger. A body can be a beautiful thing but it can also be a prison and many of us spend our loves looking for that one key or even set of keys that can allow us to “break free” or at least live a life with less discomfort and minimal symptoms.
I once went to a talk by a man who is VERY knowledge about Lyme Disease. He described being chronically ill like being on a hero’s journey (hopefully some of you are familiar with Joseph Cambell’s work, if not go here).
It really is a tremendous journey whether your illness has been there from birth, began slowly, or flipped your world upside down very quickly. It is a journey that has twist, turns, danger, and sorrow. Rarely do you have a map and often you may not even have traveling companions. Its a journey you don’t want to be on but you don’t have much choice because your life literally depends on it.
So then you begin this journey, Joseph Cambell calls it “THE CALL TO ADVENTURE : Something shakes up the situation, either from external pressures or from something rising up from deep within, so the hero must face the beginnings of change.” Perhaps you get a diagnosis quickly. Perhaps you don’t.
Once you do have some understanding of why your body keeps malfunctioning, you begin the next part of your journey…treating what’s wrong. I would consider this “CROSSING THE THRESHOLD : where “at the end of Act One, the hero commits to leaving the Ordinary World and entering a new region or condition with unfamiliar rules and values”. (source)
This part is just as treacherous and confusing as seeking a diagnosis. As difficult as seeking out answers can be, the immense rollercoaster of hope and hopelessness that comes with trying new medications, new treatments, new diets etc is like nothing I have EVER experienced.
Between having CRPS, Late Stage Lyme Disease, chronic pain, chronic nausea, hypothyroidism (which I rarely talk about because I manage it through meds very easily) etc etc etc I have tried A LOT of treatments to get my life and body in a better place.
Being sick with Lyme for those 3 years meant MANY MANY medications. At times I was on up to 5 antibiotics and we are talking HIGH doses. There were times I was taking up to 30 pills a day along with tinctures and oils etc. Often you are not only treating the illness itself but also the symptoms and even the side effects of the other medications.
It was often a bit overwhelming to open my medicine closet and see ALL of my medications lined up in a row along with these insane charts I would tape by the closet to make myself to keep track of everything I was supposed to do. Taking medications all day was like a very very boring side job that I wish I could quit.
I also tried to do a lot of “outside the box” supplements, tinctures, and treatments because I do believe that while western medicine is fantastic, theres other helpful ways to support your body and even decrease symptoms.
Cut out all gluten? Yep. Acupuncture? Yes, with 3 different practitioners. Chiropractic care? Yes. Pt? Yes. Essential oils? Sure did. Vitamin infusions, cupping, crania sacral therapy? Yes, yes, yes. Hyperbaric Oxygen Tank? Yes indeed.
Sadly nothing I tried made my pain or nausea significantly better or if I felt slight relief it wouldn’t last. Every time something didn’t work, I would just feel heartbroken and terrified I would never get better. That perhaps my life would always be suffering and all the dreams I had would never come to fruition.
The heartbreak of a medication or treatment not working is so hard to explain. No matter how many times it happens, it still hurts me to my core.
You can feel SO desperate for help and relief. Some days I felt like a greyhound who is always racing racing racing to catch that rabbit…but I never would and instead I would be left heaving for breath, tired and in pain at the end of this never-ending proverbial race.
Joseph Cambell would call this part “THE ORDEAL: Near the middle of the story, the hero enters a central space in the Special World and confronts death or faces his or her greatest fear. Out of the moment of death comes a new life.” (source)
Thankfully on March 31, 2016 I found respite when my inpatient ketamine infusions began to give me relief and allow me to relearn how to walk. It’s a long process and theres a long way to go but to FINALLY have something work was just so tremendous. I want to believe with all my heart that I am entering “THE ROAD BACK: about three-fourths of the way through the story, the hero is driven to complete the adventure, leaving the Special World to be sure the treasure is brought home. Often a chase scene signals the urgency and danger of the mission. ” (source)
I don’t know if remission is possible but I am not yet ready to give it up. I feel that urgency still though, I yearn for more relief, more normalcy. This means I still try new things and that also means that I get my heart broken when I get my hopes up. It happened last month when I flew to Colorado.
I am trying to practice letting go of any expectations when I go into trying a new medication/treatment. I’ll be frank though, learning how to enter a new highly emotional situation without any expectations is so hard and can feel downright impossible. Just like practicing gratitude, letting go of expectations is a continual practice, an intention you set. You also have to enter into any new medical situation with some kind of understanding that no matter what happens, you are not a lost cause but you are allowed to grieve this immense disappointment.
So to those who are on this same hero’s journey, searching for relief to feel normal, please don’t feel alone. Many of us traveling this same path and many of us struggle when something doesn’t make us feel better. Don’t let this immense let down dictate your self worth, your value, and your desire to to feel at home in your body again.
There isn’t a map for the journey we are on but at least we have comrades on this same path. Perhaps they have the same issues we do, perhaps they don’t. These shared experiences are a way to light each other’s path, a lantern shining in the dead of night. I understand your sorrows and heartbreak as well as your deep desire to “find your way back home”.