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.

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.

L4/L5 Lumbar Fusion with PLIF, 12 Week Follow-Up

Three months have passed since my spine surgery, and today I had a follow-up appointment that included x-rays of my lumbar spine to check the progress of my fusion:

I have little skill in reading x-rays aside from noticing obvious things, such as recognizing that the images above show a spine with hardware and not a fractured limb. My surgeon commented that my fusion is solidifying well for 12 weeks past surgery.

I suppose that this surgery has had a successful outcome. I haven’t had sciatic pains or leg numbness since early May. I am not on any daily medication for pain or neuropathy. I just take Tylenol as needed, and it is more likely that I’ll take it for a headache than for back or leg pain.

What I did not expect is a worrisome accent to any other issue brewing in my abdomen. It’s like an amplifier has been plugged into that region, dialing up the volume of various abdominal pains. This is no small inconvenience for a woman who hasn’t hit menopause yet, but only a minority of people who get lumbar surgery are both female and pre-menopausal.

I addressed this issue with my surgeon today, and he assured me that these pains should subside back to what is normal for me once my healing is complete. I hope so.

The highlight of this appointment was hearing my surgeon gently break the news to me that it was time to get back to work. When he handed the work release slip to me, I just didn’t have the heart to tell him that he gave me one just like it dated May 1 during my last appointment. I don’t work in the medical profession, but it think it may be a sign of patient overload when you’ve lost track of which patients are on work restriction.

Maybe the last five weeks at work have been mere phantasm.

My next x-rays and appointment will happen in six weeks. I wonder if I’ll get released to work all over again, this time the news delivered in tones that are even softer and with words spoken ever so slowly.

In six months, he’ll just mouth the words to me again or hire a mime who wipes imaginary sweat off his brow as he pretends to dig a trench.

Surgery Day Photos

I had a vague memory that my husband had taken some pictures of me at various moments during the day of my back surgery, but all of the anesthesia and sundry medications I took that day made me wonder if I’d really been photographed or if I’d just dreamed about it. I have a history of disorientation after surgery. Once it ran so deep that in my post-op haze I had no idea why I was in a hospital, let alone why I’d had an operation in said hospital, so I confabulated exotic scenarios like alien birth until my rational mind returned.

Over the past few weeks, I thought about asking him if I was right in thinking he’d taken some pictures that day, but I tabled the question, knowing that if such photos existed, they were undoubtedly unflattering. I may be old enough that I’ve lost lots of vanity over the years, but I am not yet so earthy that I want to see pictures of me looking bad. I decided to wait until I felt better.

This week I asked about the pictures. Yes, the pictures exist, but they were not as bad as I thought they’d be. Here is the before picture:

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I’d already had some pre-op meds by the time this photo was taken, and I recall that I felt fairly sober at that point. This picture tells me I was wrong on that count. Back when my sister and I were in our wild phases 20+ years ago, I used to poke fun at her because I could see the exact moment when she’d become drunk because her eyes suddenly looked big. My eyes have that same look in this picture!

Now for the after shot, wherein the surgery seems to have added 10 years and ten pounds to me:

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Notice how I already have my phone with me. Add some intoxicating substance to my bloodstream, and I will crave communication by phone. This is one reason I rarely drink alcohol: I can barely resist the siren call of the drunk dial and alienated a few too many people with this past habit. My hospital stay involved no alcohol whatsoever, but the post-surgical opiates opened the faucet of phone calls, both real and imagined.

There were a few times I thought I was talking on the phone to my mom, my husband, my sister, or my boss, and it seemed that the call dropped because whoever was on the other end stopped talking. Then I realized that the technical problem was a phantasm, for the conversation was entirely one-sided except in my mind. I had been talking into an imaginary phone and hallucinating the words of the other person!

I also had lucid dreams about making phone calls, and then I’d wake up and call the person I had dreamed about to talk about the dream.

While my hospital stay was sweetened with such fancy, the reason behind that stay cannot be window-dressed so easily. Below is an image of what my lumbar spine looked like via MRI before the surgery. Note the rupture at L4-L5.

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