“People assume you aren’t sick unless they see the sickness on your skin like scars forming a map of all the ways you’re hurting.” -Emm Roy, The First Step
Dear Deskraven Readers,
Here’s the short version. I’ll write out the details in a full blog post later. Thank you for your patience during this difficult time. If you’d like to write for Deskraven please email me at Contact@Deskraven.com!
I have a kidney stone that is 3mm at the mid pole of my left kidney. I also have an ovarian cyst that is 2.7cm on my left ovary. Ovarian cysts are a symptom of Endometriosis. The cut off for surgery is 2.5cm.
My birth control has made me anemic as I have been actively bleeding for 22 days, so I will discontinue. I have one more trial in me, so I will try one more method of birth control before resorting to exploratory surgery. The only way to definitively diagnose Endometriosis is surgery. Endometriosis occurs when scar tissue grows on the outside of the uterus and effects the nearby organ systems. That tissue compresses nerves in the pelvis that extend down into the legs.
Meanwhile, my pain management doctor increased my Cymbalta to 2x daily to counteract the hormonal imbalance that the birth control caused. Follow up in one month where we will also increase my Gabapentin. Both Gabapentin and Cymbalta operate as nerve blockers.
I’m grateful to finally be getting answers though. My spinal specialist is phenomenal. I told him he will find THC in my urine and he didn’t break up with me. More to follow.
Thank you for all of your love and support. This is hard. ♡
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Sometimes I surrender to the process. Other times I demand more of myself and those who love me. Chronic pain is a tricky thing, and the truth is I am starting to lose heart.
Earlier this month I had an MRI that revealed an L5/S1 disc herniation and spinal stenosis. Still, these did not explain my pain levels, so my chiropractor referred me for pain management. Initially, he had spinal steroid injections on his mind. However, with a more conservative approach my Wife and I went for a second opinion. Ultimately, we located our own pain management physician who is also a spinal specialist. After my first exam he asked to view my MRI images himself, started me on Gabapentin, and referred me for a complete Nerve Conduction Study/EMG to asses my nerve damage before moving forward with epidural spinal injections. Today was that day, and let me just say if you have never experienced one of these, count yourself blessed because it’s some kind of monster.
Upon arrival my neurodiagnostic tech greeted my Wife and I. Even though he was awesome, knowledgeable, and forthcoming about the level of discomfort I would experience, nothing could have prepared me for this.
He explained that there would be three phases to the procedure. First, he would adhere leads to my lower extremities and use electrical stimulation to measure my nerve response. He would begin on a low setting and increase accordingly along my lower back, legs, and feet. Next, he would adhere leads to my forehead and feet to measure my brain’s response time to S1 nerve stimulation, an area thought to be damaged in my case. Finally, he would insert small needles into my legs, feet, and back to measure my nerve response in a flexed position versus a relaxed state. He stated treatment routes can range anywhere from nerve surgeons to physical therapy based in the results. He informed me the procedure would last thirty to forty five minutes, and we began.
I took a deep breath and did my best to relax even though I was anxious and cold. I tolerated the first round fairly well being that I have experience with a TENS unit at home. It felt very similar along my legs and feet, however, as he increased intensity so too did my discomfort. It was interesting to detect abnormalities in my response to stimulation on my left and right side. The right side of my body seems to be notably problematic due to spinal stenosis (a narrowing of the spine) and the subsequent nerve damage. My Wife sat across the room observing my limbs jumping on the table as the tech wound up his tools and administered increasing shocks to various parts of my body. I took comfort knowing she was there, and I was able to relax into a state of meditation. The tech asked if I was okay, and we had a good laugh about good patients and bad patients. He confided in me that some people scream and cry, and it isn’t unusual for them to walk out altogether. It didn’t take long before my meditation broke and I was overcome by wincing pain. Suddenly, I could understand why.
Next, the tech applied electrode gel and medical adhesive to my forehead right where your third eye might be, as well as on the top of my head. This was relatively painless, a gentle respite from what was to come. He explained this was used to measure brain activity in relation to sensation in the S1 nerve specifically. And so I sat, for two important minutes in complete silence, careful not to move.
Next came the needles, and even though I kept my humor about me to aid in my composure, I knew the next part would require I call the warrior in me to the surface. The tech explained he would insert small needles into three locations on each leg, and four on either side of my spine for a total of ten. The insertion of each needle was tolerable, but then he added intense electrical stimulation and asked me to flex and hold various positions. During the time of the recording, a loud crackling sound could be heard emitting from the computer speakers. As if the excruciating pain some may equate with torture wasn’t enough, I felt as though I could be scooped up by space creatures at any second. I began to groan and hum a bit, noticing some parts of me were significantly weaker and more pain producing than the rest. Lastly, he asked me to turn onto my tummy where he would repeat the same procedure on my lower back. Surprisingly, this wasn’t as painful as the others, likely due to the fact that I was already defeated and there’s more tissue to absorb the shock and pinch.
Finally, my Wife tied up a few loose insurance ends and my shoes were returned to me. The tech informed me he would forward his findings to a neurologist and we would have the results at my follow up appointment with my pain management doctor in three weeks. I thanked him and wished him a safe drive home. He handed us his business card and wished us well before I stumbled out the door.
The first thing I did was crawl into the car and light a cigarette. I felt all of my medical trauma adding up. I knew the tears would come, but not yet. First we had errands to run and children to mother. I felt as though I left my body more than once and nothing really mattered outside the dissociative cloud I had moved into. I just wanted to collapse into my Wife who I am so grateful for and shut the world out. I just wanted to take a moment to validate my suffering. I just wanted to fall apart and not worry about anything else. Soon the demand became too great, my boundaries crumbled in my vulnerability, and I moved into a state of overwhelm. Even though my loving well intentioned Wife was going on about practical things, I couldn’t hold it anymore and my eyes welled up with tears. Naturally she was concerned, but I reassured her it had nothing to do with the groceries. I’ve worked hard to push my processing delay forward with the wisdom that it’s okay and perfectly healthy to cry. I have been a brilliant suppressor who constantly seeks to release that part of herself.
Finally, we returned home and the night ensued with challenging parenting, wine, reflection, and warm water.
I could sit here and tell you ten clever Deskraven ways to cope with chronic pain, but the truth is I haven’t uncovered anything yet that has truly provided meaningful relief. Like psychology, it seems to be nothing more than symptom management and breakthrough pain despite your best efforts. There are good days and there are hard days. Today was most definitely a hard day.
So, here I lay in a tepid puddle measuring my mental health against physical defeat, sharing all of this with you for the sake of the one person who needs to read it. Please do not despair. You are not alone. Tomorrow will be mostly bed ridden sleep, and hard prayer for the answers I know are coming. When they do, I promise to share them with you, too.
Discuss: How has chronic pain impacted your life? How do you cope?
**If you’re a mental health survivor or mental health provider and want to tell your story – please email me at firstname.lastname@example.org!**
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The truth is I should be doing my homework right now, but I have so much to say. Last week marked the beginning of the end of a very long road. If you know me personally or have been a dedicated Deskraven reader, then you know I am not shy about sharing my diagnoses with my readers. This is because I believe in assigning pain a function so that our suffering may not be in vain. This, emboldened by the power of community, has offered me a great deal of meaningful processing and the subsequent healing that follows. The mission now is to return that information back to the masses.
That being said, I live with Mixed Bipolar Disorder, PTSD, and Panic Disorder w/ Agoraphobia. I have many posts archived on all of these disorders if you care to learn more specifically about how these can impact your life. For now, I will be concise.
In short, Mixed Bipolar Disorder is characterized by disorienting mood swings and behavioral changes that often result in significant social and professional consequences. Mixed episodes are unique in that in contrast to Type 1 or Type 2 Bipolar Disorder, Mixed Bipolar Disorder consists of both highs (mania) and lows (depression) simultaneously. This is considered significant because people who experience mixed episodes are at a greater risk of suicide due to the impulsive energy mania provides while also being in a state of depression. This presents differently for each sufferer, but in general I experience a great deal of grief and agitation that can range anywhere from clinical sadness to full blown psychosis if I am not careful to force feed myself self-care and the power of saying, “No.”
Similarly, PTSD is characterized by mood instability, sleep disturbances, and a false sense of reality brought on by trauma. Trauma consists of experiencing something life threatening such as war, relationship abuse, addiction, mental illness, an auto accident, a chronic illness, medical trauma, an untimely death, a sexual assault, etc. – or watching someone we love experience these things. Trauma is relative so what may be traumatizing for you may not be for someone else, or vice versa. Most people who experience these types of life disturbances experience a period of profound grief. Often with the help of a professional counselor or spiritual teacher, we are able to move through, process, and release trauma in a way that both honors our suffering, and releases us from our entanglement to the traumatic event. This allows us to move forward with little to no lasting impact on our mental health. Individuals who become stuck or stagnant in this process develop Post-Traumatic Stress Disorder (PTSD).
Finally, Panic Disorder is characterized by panic attacks, the sensation that you will in fact die at any second, physical manifestations of fear including shaking and hyperventilation, and the fear of their inevitable return – usually in public. As you can see, this disorder is incredibly cyclic and self-perpetuating. The good news is this also makes it one of the most treatable mental health conditions. Agoraphobia is often the product of Panic Disorder in that this experience triggers pathologized avoidance of public, wide open spaces, crowds, and any location that may produce the inability to escape to the point that it becomes a clinical phobia that interferes with your quality of life or your ability to leave your home.
For some reason my soul decided that the above conditions resulting in two in-patient psychiatric hospitalizations would not suffice for one lifetime. So, in addition I also experienced a car accident in 2015 that ultimately lead to me developing physical chronic pain. Subsequently, I had several other injuries over the years, including a concussion, but believe this incident to be the most significant. What I should have done was seek treatment from the Orthopedic Surgeon and Physical Therapist I was referred to, and made the person who hit me pay for it. Instead, in my stubborn naiveté, I accepted a $1200 settlement and never went to the doctor. For the first couple of years I had aches and pains, but in general I remained very active and physically fit. Sometime in 2017 my injury worsened.
Suddenly, I found myself collapsing at the side of my bed when attempting to stand up. I found I could no longer tolerate my yoga practice because the nerve pain was excruciating. I could no longer enjoy being active in nature or playing with my son. I experienced neurological symptoms and nearly lost consciousness. My posture began to suffer and I developed difficulty walking, standing, sitting, sleeping, driving…existing. No matter what I did I couldn’t get comfortable. The pain was constant, burning, and sharp; localized in my lower back, shooting into my hip joints, and down into my lower extremities. I experienced inflammation, pins and needles, numbness, muscle spasms and migraines. At the height of this I found myself completely unable to work, slowly losing everything I had worked so hard for, and applying for long-term disability before the age of 30. Countless ER visits, a bajillion CAT scans, innumerable blood draws, and one grueling in-patient hospitalization later we were able to rule out life threatening neurological conditions and auto-immune disorders.
Last week I met with a Spine Specialist and received the MRI I have been seeking for years. Finally, I got some answers: L5/S1 central disc herniation and a narrowing of the spine, sometimes referred to as Spinal Stenosis. In light of these results my doctor referred me for various types of treatment including chiropractic adjustments, a 20-session spinal decompression program, and pain management including spinal steroid injections with the end goal being complete physical rehabilitation. Fortunately, he believes I am not a candidate for surgery at this time. He is also considering additional MRIs as he has seen in his practice a neck injury masquerading as lumbar pain.
After some discourse and the types of answers that only yield more questions, we decided the best course of action would be to get a second opinion before we commit to a decision and begin pain management. Currently, I am spending 2-3 days a week in doctor’s offices, receiving chiropractic treatment, alternating between hot showers and ice packs, consuming copious amounts of ibuprofen, altering my lifestyle as much as I can tolerate, and spending 30-40 minutes a day hooked up to a TENS unit at home with the help of my beautiful wife.
The more doctors you meet the more you realize why medicine is considered a practice. No one really has all the answers. It becomes paramount to advocate for yourself in the medical setting, and to work together to find the best course of treatment for you. Finding a good doctor or therapist is a lot like dating. Chronic pain is not that different from psychological anguish. The outcome is the same, and sometimes it takes time to find the right provider.
Somewhere I read that ruin is a gift life gives us because it is only in the dismantling that we are able to transcend our suffering. In this light, I have come to appreciate my white-knuckling desperation as an indication of teaching, as well as the not so gentle push from my loving wife to seek treatment. Perhaps the key to becoming a true patient is to simply not engage in resistance, the same way mental health recovery means not resisting the good that is being offered to you even though you’ve been told your whole life that you don’t deserve it. It’s okay to feel how you feel, so long as you’re willing to do something about it. The truth is I am as stubborn as they come, however, this trait will never serve me unless I learn how to shift resistance into determination.
Humility has been my calling to self-development and recovery my calling to life. Similar to the way a flower manages to bloom between the cracks in a sidewalk, at some point you learn that overcoming suffering is a choice. I know this experience is going to teach me exactly what I’m made of because the only way out is through. This resilience is revelatory coming from someone who previously held no sense of self-preservation. I say that to say this: Do not ignore your pain in whatever form it takes. Address it.
Healing is not only for you, but for those who love you, and refuse to stand idly by while you concede to what your life has become. The truth is that despite every obstacle you have faced, you do not have to accept victimization or enabling on your path to wellness. The truth is you can decide to take accountability, to change, and to do whatever it takes to reclaim your quality of life. I know there will be days of purposeful set-backs. Sometimes I make progress. Sometimes I cry and the chores don’t get done. Still, I can see myself on the other side of this, and I can’t wait to give my wife the partner she deserves.
Discuss: How has chronic pain impacted your life and mental health?
**If you’re a mental health survivor or mental health provider and want to tell your story – please email me at email@example.com!**