Still searching for answers

I’ve had yet another lengthy flare-up of nerve pain. I waited to write because, really, what is the point of peeling that onion of anger and frustration once again? It’s not like this nerve pain recedes completely. It’s been a faithful visitor to me for decades (since age 11). Its visits have become frequent and longer lasting over the years, especially in the past year and a half, with the exception of the six month period immediately following my spine surgery. I had minimal nerve pain during those six months. It’s possible that I lost of bit of my “tolerance” for this pain during those six months, kind of like how one needs to get acclimated to cold all over again at the beginning of winter. Still, you’d think I’d have built that tolerance back by now.

It’s becoming clearer to me that I may not find an answer or a ready narrative for my pain. I recently read a book called Drug Dealer, MD by Anne Lembke, MD (Johns Hopkins Press). While this volume is really a textbook for college classes addressing the opiate crisis, it did have some concepts I found very helpful to my situation. Lembke stresses that story creation is a fundamental part of both culture and identity.  Like every culture, mine has common stories about illness, about pain. There’s a good chance I’m going to pursue one or more those stories to get relief, and the doctors who have treated me and will treat me have their own stories.

I feel lucky that one particular story was not available to me: long-term opiate therapy. Had I gotten surgery for my ruptured L4/L5 disc earlier in time (and my disc ruptured many years ago, unbeknownst to me, actually), this may have turned out differently. I think it was a bad collision of opportunism on one side and compassion on the other that lead to a whole generation of back pain patients getting hooked on opiates. No one can convince me that opiates work long-term at safe doses, and I don’t think they help with nerve pain. There’s also the proverbial elephant in the room, or the colon, if you will, constipation. Why in the world in the world would I want to lay a pile of bricks and mortar on top of the mess I’ve already got going on down there?

I used the term back pain the preceding paragraph, but that is also a source of contention for me. In reality, I don’t often have back pain, and when I do, it quickly resolves itself. No matter how many times I’ve tried to correct the matter in the past and present tense, my appointment records and the like still indicate that I have back pain. Is there is just no diagnostic category for what ails me? I have spinal stenosis, assorted bad discs, and the like. I have radicular nerve pain that is intermittent and moderate to severe when it flares up. Years ago I saw an electrical storm from a highway in the New Mexico desert. The nerve pain feels like that storm looked.

The pain seems to be a function in part of the pace of my movement. This is most evident when I am walking. Slow walking or waiting in line can be an agony to me, but faster walking usually gives me no trouble. Why is it that I can walk miles in a day but I can’t stand in place for more than a couple minutes?

This is the moment when I recall something that my sister, who is a fellow nerve pain/spinal stenosis patient, used to say to me in the midst of our various sibling rivalries, “Nobody knows and nobody cares.”

That may sound radically cynical, but there’s a vital truth in it for chronic pain patients: you are chronic because nobody yet knows how to fix your pain, and if they do not care, do not go back.

I don’t know where to turn next for getting treatment for this nerve pain. The first thing I’ve learned is that any treatment can have unintended consequences. When I had L4/L5 fusion with disc replacement last year, the indication was advanced disc degeneration and severe spinal stenosis. I had significant numbness in my left leg, urinary issues, and the like. I did have sciatica in the months leading up the surgery, but nothing as troubling as the nerve pain I’ve felt in the past nine months.

Long story short, surgery was the treatment of choice for what ailed me. I knew that the discs above the one replaced were not in great shape, but I did not think they would give me trouble so quickly. By the way, despite the nerve pain L3/L4 is generating, it is nowhere near qualifying for surgical removal. The one that did get removed, L4/L5, was so herniated it compressed my spinal cord on one side. It remains a mystery to me why it took so many years for me to feel pain or other symptoms from the L4/L5 rupture.

Next, I had the epidural injection. I wasn’t thrilled with this treatment. The relief I had was partial, and it lasted for six weeks. After this injection, I had nerve pain in new locations like my toes and neck. When the L3/L4 returned, it was mirrored to the right side, too. Now I have nerve pain in all four quadrants of my body. I cannot claim a cause-and-effect relationship here, but I will tell you to be very careful when you open the proverbial Pandora’s box of the central nervous system, especially if you come from a family with a history of migraine or fibromyalgia as I do. It’s not that I feel more pain than I did before I had the epidural; it’s coming from many more locations than it did before.

Back to the concept of story, I suppose it’s up to me to craft one of my own that helps me makes sense of what’s changed within me, one that does not rely on scalpels, syringes, or prescription drugs. We were human long before there were any cures. We loved, suffered, and triumphed before we knew what ailed us.

The Thaw Begins

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The weather continues to vary, and the graph of its changes could stand for an equation not yet quantified. Last night the low was 30 degrees, but Tuesday’s forecast high is 71 with heavy rain. We have reached the point of winter that reminds me of that arcade game with the ever-growing row of quarters that inch ever slowly toward a jackpot that really is the watched pot that never boils.

Against the backdrop of disappearing and reappearing snow, there has been some movement forward in my family, but there are lingering frustrations. The boys who taunted my daughter at lunchtime have been moved to a different cafeteria at her school. As for me, I finally had my epidural injection for nerve pain arising from my L3/L4 disc.

The epidural has definitely helped with my nerve pain. Six days after the injection, it seems as if it resolved 80% of my pain and redistributed the rest in oddball locations like the toes and bridge of my right foot. Before the shot, almost all of my pain was on my left side. What matters at this point is that my pain is tolerable. I sure wish the cortisone shot hadn’t bloated me (hooray for elastic waist pants!), but that side effect should be gone within a week.

Eileen still is still not thrilled about attending school, but what teenager ever has been? There is still a moment every school morning when there is a possibility that things will fall apart, but I’m so proud of her when she overcomes that inertia and gets on the bus.

I’ve started reading In a Different Key: The Story of Autism by John Donovan and Caren Zucker. I’m just a third of the way through this excellent book, but the experience has already been a bit cathartic, especially the passages about the “Refrigerator Mother” paradigm that reigned for entirely too long. Essentially, this theory insists that mothers create autism through poor parenting.

Unfortunately, my experiences suggest to me that this theory just formalizes a common layperson’s definition of autism, that the behavior of such children is nothing more than proof positive of a parent who is too lazy to raise a child properly. This has been the greatest frustration of my time as a mother. There have been a few people who shall remain unnamed, people who matter to me more than anyone else in this world, who in anger have told me that I created all of my daughter’s problems through my parenting. I have been hurt by such words, but there has also been the agony of knowing that I love some people who cling to ignorance despite all of the information I’ve given them, despite their witnessing firsthand many of the trials my daughter and I have endured and overcome together.

When my daughter turned two, a local hospital evaluated her intelligence as part of her intake for early childhood speech therapy. The staff informed me that their evaluation indicated that my daughter was “retarded.” Oh really? She learned to read less than two years later. She took the ACT in eighth grade and scored 31 in the English section.

Don’t believe what people tell you about your child and your parenting if it rings false.

One month down, two to go . . .

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I really don’t like winter. While I appreciate its restful qualities after it’s reality has passed until the next year, I detest winter in the present tense. Why is it that everything seems harder when the weather is awful? It’s not as if I’m living outdoors. Actually, I am outside no more than is necessary.

Since I wrote last, I have endured the H3N2 flu that has made its unwelcome visit to so many homes this year. I did get the flu shot, so the illness was not nearly as awful as the last time I had the flu years ago when I become so delirious that I hallucinated I looked like a supermodel version of my myself when I looked in the mirror. While that symptom was not an unpleasant one, the chills and muscle aches of that flu are something I’d rather forget. I also had the benefit of Tamiflu this time around. I was pleasantly surprised at how quickly that medicine worked on my fever and congestion.

I am still waiting for my epidural shot that should help alleviate the bulging L3/L4 disc that is impinging a root nerve that runs along my left hip, thigh, and knee. Now that insurance has preapproved this treatment, my shot has been scheduled for the middle of February.

If you ever find yourself in need of treatment for spine issues, be prepared to wait in line behind an unbelievable amount of people. These issues are so commonplace I’m surprised that they are not standard fare for conversation, like predictions of winter storms and roll calls of who’s on statin drugs for high cholesterol. If this were so, I would not have been disappointed so many times in how long I’ve had to wait for spinal treatments.

In other news, I have faced a common struggle that plagues parents of teenagers, the age-old battle over school attendance. I have endured a few too many mornings convincing my daughter that every school day is important. I have gone so far as to tell her that attendance is the most important thing one learns in school. In college, I once heard the rumor that St. Thomas Aquinas had a vision shortly before his death in which he saw that all of his erudition was but straw compared to the reality of seeing the Almighty. Likewise, my adult experiences have made the values of my youth seem so trivial. Your grades and class rank have little value if you can’t be depended to show up at work.

In contrast, she made a bold yet shrewd choice in plotting the rest of her high school days. She has applied to join an automated manufacturing program at a local vocational high school. She was the only young woman who visited the open house for this program. Here is a sample of some of the work she enjoyed during her visit:

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I am so proud of this unexpected choice. She’ll graduate with all the classes she’ll need for college, but she’ll also have job skills that pay living wages. I sure wish that I had acquired actual job skills in my high school days. The only vocational skill I had was typing.

When she mentioned that she’ll be wearing a uniform for the work portion of the program, she said, “Maybe I’ll look like Grandpa.”

I replied, “Looking like Grandpa is not a bad thing.”

When I consider her choice, I can’t help but reflect on two truths. We stand on the shoulders of giants, and we are deeply influenced by our ancestors. In my family tree, that giant is my great grandma Nellie, who in the photo below was the only woman making school buses at Lima’s Superior Coach factory:

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A Fortnight and a Day

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Wake me when this mess of a winter is over. I really wish I could hibernate through this season. Having lived in Ohio for most of my life, I am accustomed to wide variances in weather. A 70 degree weekend in February is not impossible. I’ve also witnessed a two-inch snowfall in May. Still, recent weather has tested my endurance:

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These brief reprieves of warmer temperatures make it hard to acclimate oneself to the spells of ridiculous cold. Our average January high and low should be 33° and 19°, respectively, but it seems we hardly ever have a winter day that represents that average.

At least the crazy weather has afforded my daughter a few snow days to work on switching back her nights and days.

In other news, we have found a second guinea pig, aptly named Buddy:

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He is quite unlike our other guinea pig L’Orange in one way: he actually likes to snack on vegetables. I hope they do not develop a sibling rivalry with Buddy occupying the role of the child who better conforms parental exceptions whilst taunting his rival sibling in secret (btw, I was that sort of sibling when I was growing up).

It is too soon to tell how well the guinea pigs will get along. I’ve taken Buddy to the vet for assurance that he is not carrying infectious diseases, but I feel I should wait a bit longer to put them together in a large habitat. L’Orange just seems to be a mountain of a man compared to little Buddy. I did succumb to temptation and placed L’Orange in Buddy’s cage for a few minutes a couple days ago. What ensued was a comedy of errors wherein L’Orange literally dragged his ass around the cage while Buddy tried to make his elder a hobby horse. I suppose they can have another opportunity to sort out who’s the boss at a later date.

My vacation at home during the first week of the year was a misery of sciatic grade pain and frozen weather. I learned something important that week: spinal stenosis and sedentary living do not combine well. As much as I’d like to do so, it is a terrible idea for me to sit down and read for eight hours a day, no matter how engrossing the texts before me might be.

As for my back, it turns out that my L3/L4 disc is bulging to the point that it is impinging a root nerve that runs across my left hip, thigh, and knee. As a result, I have nerve pain along that pathway. I will be getting an epidural injection soon to help remedy this issue.

I had one of my periodic surgery follow-ups last week. It’s been ten months since my L4/L5 fusion, and my spine is fusing well:

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If only my lumbar degeneration had been confined to the disc that was removed. If so, I would be fairly trouble-free at this point with orthopedic pain.

p.s. Of all the Golden Age mysteries I’ve read recently, I highly recommend Agatha Christie’s The Pale Horse. I think that Christie’s body of work explores a lot of the anxiety of coping with a changing modern world. This theme is very apparent in this novel.

My vacation from blogging

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Our first snow of the season is falling outside, an inch-deep Alberta Clipper. I am long past the cozy enchantment of anticipating snow drifts and the like. I’d rather watch it through the safe distance of film or video than experience it firsthand.

I’ve refrained from writing posts for the past couple weeks because I thought that doing so would be akin to pouring salt on a wound. Now that the worst of the nerve pain that plagued me through late summer to mid-November seems to be behind me, I have been quite angry over what happened. I am mad that I waited so long for relief (which, by the way, came randomly with the pulling of a heavy drawer while bent over at an awkward angle).

I am not exaggerating when I say that this interlude of nerve pain was the worst thing that has ever happened to me. Maybe there is something in the nature of pain that inclines a person to believe that the latest acute episode is the worst one, sort of a photo negative of one’s love life, how often we hear that a person’s current lover is the best one ever. With that aside, I will tell that I really did feel worse than I ever had.

I am no stranger to pain. I had a radical mastoidectomy, wherein a damaged part of the skull that borders the ear is removed. I was in labor for 44 hours when I had my daughter, and I had no pain medication for 24 out of those 44 hours (and this was back labor). I would add this year’s spinal fusion surgery to this list, but the pain of that procedure and its recovery were nowhere near as bad the preceding two events in this paragraph.

I know that there are millions, if not billions, of people in this world who’ve lived through pain far worse than I have. I can only attest to my own pain, and I am mad when I think of all the effort I devoted to finding a resolution to my recent pain. I don’t think I was taken seriously because I could still walk on my own and keep a straight face while doing so.

It must be hard for orthopedic doctors to understand that the pain of a patient who can work and communicate as normal can be important. In any given day or week, they see patients who’ve been broken through traumatic accidents, people who arrive for their appointments in a wheelchair or on a stretcher. So when someone like me comes knocking, a patient who seems to walk with apparent ease and can report their symptoms in a near-clinical tone, they must be tempted to assume that such a patient is just worried but well. I was not.

After three months of asking for an explanation for why I suddenly felt so bad six months past my surgery, I learned a few things through an MRI and physical examinations. I am healing well from my L4/L5 fusion surgery. This does not surprise me because the pattern of my nerve pain was markedly different than what I experienced in the months leading up my surgery. Back then, I had numbness in my left knee and part of my foot, with flares of sciatic pain that struck at random. This time around, I had awful nerve pain in a band from my outer left hip to the inside of my left knee, only when I stood in place for more than a few minutes or walked more than a hundred yards or so.

It turns out that my L2/L3 and L3/L4 discs have degenerated more in the past year, but neither are in bad enough shape to qualify for more than conservative treatment measures. I also have bursitis in my hip and strain in a tendon that leads from my hip to my knee (ITBS, or iliotibial band syndrome). I’ve been doing physical therapy exercises for the bursitis and ITBS, but the aches and pains of those issues aren’t completely gone.

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I do not yet have clarity on what I can do to prevent further flare-ups of nerve pain. No one has offered me a prognosis or definitive reason for why my orthopedic problems continue. Last year, I heard that my lumbar degeneration is hereditary. This makes sense given that I have several close relatives with similar problems. However, there isn’t enough similarity between our symptoms and course of disease to model a course of action based on what has worked for the others.

I wish I knew if I there was something I am unwittingly doing that could be making things worse, that some qualified person could take me in hand and tell me that I should change my life in such-and-such ways because of my spinal stenosis. It seems I must draw that map myself.

I don’t think I have accurately conveyed how active I must be to lead the life that I do. Both my job and my life at home require all sorts of walking. Below is a chart of all the walking I’ve done since my surgery in March (from my Fitbit account, btw):

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I’ve discovered through long experience that the only sure thing that keeps my depression at bay is walking. I thank God that the chief prescription for my surgical recovery was walking. What would I do if my spinal stenosis progressed to the point when I couldn’t walk much at all? I’d practically need to remake myself.

I’ve watched far too many episodes of Agatha Christie’s Poirot lately. There was something Poirot said in the episode called “Appointment with Death” that is one of the most inspirational things I’ve ever heard:

“There is nothing in the world so damaged that it cannot be repaired by the hand of almighty God.”

A Rainy Saturday Morning

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Around 11 last night, it started raining hard enough to turn all the pipes on the roof into little dissonant steel drums. My sense of what keeps a house from surrendering to noxious fluids and vapors is vague at best. It’s only during a hard rain that I know for certain where the all the exhaust vents emerge atop the house.

I awoke to the sounds of the same hard rain this morning. I’ve already done the dishes, started the laundry, and done some basic grocery shopping this morning. I really should fold the clothes. When the dryer starts dinging, it’s like a siren call of domestic duty–fold me now, lest you need to dust off the dreaded iron.

I will resist that call in favor of writing a bit. I don’t think there’s anything in that dryer that can’t be unwrinkled with a few minutes of fluffing.

I suppose it’s a cardinal sign of self-absorption to the start several paragraphs in a row with the word I. Indeed this post focuses on me and my recent struggles.

In sharing these problems, I hope that I am not merely alienating my readers. It is not impossible that some of you have endured the same or similar trials. If that is the case for you, I hope you find some solace in seeing a kindred spirit emerge from similar adversity.

I am just arising from flare-ups of chronic pain and depression that spanned three months. It began with hip pain and ended with the worst variant of sciatica that I’ve ever had the misfortune of feeling.

I did have a few random days I felt no pain at all. All the while, I had no pain unless I was moving. To feel no pain at rest is a blessing ordinarily taken for granted. I recently joined a Facebook support group for people who’ve had spinal fusion surgery. My first impression was how fortunate I am among that cohort of patients. Compared to that group of patients, my burden is light. I don’t struggle to sleep because of pain. I can work.

Here is the thing I gleaned from reading those stories: The only pain you know is your own, and it should not be discounted just because someone else has suffered more. There were moments of my most recent sciatica episode that afforded me the worst pain I’ve ever felt. It’s a pain that does not season you pleasantly with wisdom or humility. Instead, it just makes you bitter that it happened, a rude surprise that you still had a little innocence left to steal.

It all ended with a moment akin to the last bolt of lightning that flashes at the end of a storm. I was putting away laundry and leaned over to open one of my clothes drawers, a drawer that is heavy with clothes that need pruning. I felt rushed (for no good reason) to finish the laundry, so I stayed bent over at the same awkward angle as I closed the drawer. As I pushed it closed, I felt a bizarre stretching in my lower back, and the ends of my spinal fusion felt like they were sparking with a bit of heat.

I straightened myself out, dreading that I might have complicated hereditary lumbar degeneration with a careless accident. As I walked down the hallway from my bedroom, I realized that something quite different had happened. My sciatica was gone. My awkward maneuver made a supremely lucky adjustment, one that I couldn’t repeat in a hundred tries.

I am still contending with the ordinary legacy of ongoing recovery from my spinal fusion surgery, which presents a random array of numbness and nerve pains. It is a calm I’ve not known for long since the height of summer.

I’m devoting this time before the holiday rush to some deeper rest. I’ve been digging into some Agatha Christie stories, both in print and on television. Actually, Agatha Christie is an author I willfully ignored until now, dismissing her body of work as trite without having read a line of her work. I’ve been pleasantly surprised at how witty and sometimes bawdy her prose can be. The stories I’ve read and seen on screen are reminders that the moral compass of humanity isn’t degenerating more with each succeeding generation. The good and bad have always existed, only the fashions and technology have changed.

I’ve been pleasantly surprised at how witty and sometimes bawdy her prose can be. The stories I’ve read and seen on screen are reminders that the moral compass of humanity isn’t degenerating more with each succeeding generation. The good and bad have always existed; only the fashions and technology have changed.

With that written, I will now attend to folding the laundry, avoiding any foolish haste with the pushing and pulling of drawers.

Chronic

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I decided to use a benign floral image for this post rather than recycle one of my x-rays. That photo reminds me that there is truth, beauty, and comfort to be found in places outside myself. Right now I find little solace on the inside.

I am still contending with orthopedic pain that is trending toward chronic pain. More of my problems have been revealed through recent doctor visits. All of these issues are just different facets of the same stone, but the substance of this stone resists identification.

My lumbar spine issues were partially resolved through the L4/L5 fusion surgery I had back in March. When I look at my orthopedic visit summaries, I don’t like that diagnoses like “lumbar spinal stenosis” and “radiculopathy” are marked as resolved, as if my surgery totally alleviated those issues. In truth, the surgery repaired my worst disc space, but I have three more problematic discs. My MRI from December of last year revealed that I had four bulging or ruptured discs in my lumbar spine. The degree of deterioration between L4/L5 was far advanced compared to the other discs, so it was chosen for surgical intervention.

My recovery was progressing better than expected until August when the pain I used to feel while standing in place came roaring back worse than I’d ever felt in the past. This is admittedly a strange problem: when I am resting or walking quickly, the pain I feel is minimal or nonexistent. Moving slowly or standing in place becomes very painful within a couple minutes. We’ve all known the mental agony of waiting. It’s like this pain is that torment made physically manifest.

This disappointing development is odd considering that the serial x-rays after my fusion show that the area is healing and fusing well. My spinal surgeon referred me to another doctor in the orthopedic practice, one who focuses on hip and knee problems. The hip/knee doctor diagnosed me with (and this is a mouthful, admittedly) iliotibial band syndrome with sartorial strain. He prescribed physical therapy for this problem.

The exercises I learned in my PT sessions have helped resolve much of the tension I was feeling in my left leg, but my pain I feel while standing in place or walking slowly has not diminished.

I had a follow-up appointment with the hip/knee doctor today. He considered my complaints and carefully reviewed my pelvic x-rays. He told me that I have arthritis in my left sacroiliac joint, where my spine joins my pelvis. I’ve started a prednisone dose pack to reduce the inflammation in the joint. If these pills do not substantially reduce my pain, it is likely that I will get getting a cortisone shot directly in that joint (guided by x-ray for proper placement).

It so happens that the hip/knee doctor has also had spinal fusion surgery, and he told me that he also has arthritis in that joint and has had such injections twice. When he revealed this information to me, I silently wondered why he didn’t mention this history during my visit last month. It would have stopped me from dreadfully speculating that my pain while standing was due to another ruptured disc. Really, I spent too much time considering that lumbar degeneration could follow a trajectory similar to that archaic domino theory of communism.

Apparently, there is something of a domino issue going on with my arthritis. I have extensive arthritis in my lumbar spine. That my spinal arthritis has been developing silently and painlessly for years seems proof of divine mercy in my life. Now that this arthritis has spread to an adjacent joint, the pain at that spot definitely has volume.

All of this static has occupied much of my mental space lately. I suppose there is a bizarre happy medium of suffering. A life free of adversity would be tasteless, its beauty as shallow as a polyester pantsuit, pleasing and wrinkle-free only from a distance. There must be a point of saturation for pain. Once this point is crossed, there is no eloquence, poetry, or melody. Life condenses to necessity, and the challenge is to keep from turning inward, for that is where pain reigns as long as it rages.