Garden, May 23

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I scheduled a day off work today due to an EMG (electromyogram) test scheduled for this morning. The test was only minimally painful, which was a pleasant surprise. One doesn’t expect the sensation of electric shock to be merely inconvenient. The strongest charges did provoke a tiny rush of adrenaline, which I suppose was my body’s way of reminding me that shock is something to avoid.

More on the EMG in a later post . . .

I had some time to take a few photos of the garden. I love the May sunshine, how it offers a warmth that is not yet oppressive. It’s something I long for a bit all year.

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Nothing Ever Changes Unless There’s Some Pain

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Spring is well into its eruption of green and blooms. Once again, it’s been entirely too long since I last posted. I actually took these photos a fortnight ago, but I haven’t gathered the will or candor to post them until now. The previous sentence begs the question of why should honesty enter the equation of creating a blog post with nature photos? This oddity arises because this blog is also an open diary of sorts, and I feel that failing to disclose parts of my ongoing problems would be a lie of omission.

I continue to struggle with chronic pain, and I suspect that I have partly alienated key people in my life with my complaints about it. I can take enough of their perspective to understand why some people just look at me with stone-still faces as I talk about my nerve pain or migraines. They can’t solve this problem for me. Nerve damage is not something that can be fixed like a flat tire.

There’s also something to be said about the notion that thinking about pain is not helpful. I don’t think it’s possible to talk about pain without thinking about it. Reflecting on pain can intensify the sensation of it. Perhaps my conversations about pain tend to become monologues because people might think being supportive of my talking about pain will lead to me thinking more about it and hurting more. There’s an innocence beneath such a perspective. You are lucky if you’ve never felt pain so omnipresent that it could not be ignored. Since I think of lyrics entirely too often, this sort of aforementioned innocence reminds of some lines from “These Days” by the Foo Fighters: “Easy for you to say . . . your pride has never been stolen.”

Speaking of lyrics, the borrowed the title of this post hails from “Goodnight Song” by Tears for Fears. There are bits of treasure to be gleaned from pop culture.

Another gem I remembered this week hails from “I Wish You Well” by Tom Cochrane (who, btw, also wrote “Life is a Highway”): “She wants her space to feel love and be angry.” I’m still angry that pain erupts in me every single day, like a toddler who tantrums again and again for toys that might have been bought if not for the fit thrown. There are few certainties in life aside from birth, death, and change. I’m mad because I don’t want my life to change.

I loved the character and substance of my days in the decade before this mess happened. I loved that I had become a morning person, that I had conquered my fatness (a problem which has returned btw, but not entirely). I loved binge-watching British mystery shows while riding an exercise bike or elliptical machine for the entirety of a series (I’d watch the show for 30 to 45 minutes at a time). I loved my small feats of strength, such as carrying the better part of a trunkload of groceries in one trip.

I’m beginning to consider that the sort of life I was leading was both a denial and intuitive treatment of spinal issues that had been brewing for years before their diagnosis. Weight loss is a good conservative treatment for spinal degeneration. Losing 130 pounds did make me feel better, but all the while I ignored important signs. It is not normal to awaken five nights a week due to leg cramps. It is not ordinary at all for weight loss to restore sensation to a knee that was apt to go numb when doing any significant standing or walking. This era of my life now seems to be an extended remix of the sort of denial that can lead a woman to fail to realize she is pregnant until she is in labor. Wasn’t there a show about this phenomenon called I Didn’t Know I Was Pregnant? I remember seeing an episode of this series wherein one of the women said she was mystified by pains that were “growing stronger and longer and closer together,” until her baby crowned.

I recall laughing heartily over that woman’s surprise childbirth story. I thought, holy shit, how can you be of childbearing age and not equate pain that gets stronger, longer, and closer together with labor? I now know that life is full of such willful ignorance. We bury all sorts of deception and pain until we’re ready to deal with it. There are times when we’d rather not add up signs of betrayal or know what that pain means. We don’t want to stop just yet and open the door to that which must be reckoned with eventually.

I’m lost in charting a course in how I must change to cope with my chronic pain. Should I pursue a cure when some of my previous attempts seemed to be worse than the disease? I belong to a Facebook group for people who’ve had spinal fusion surgery. I’ve noticed that many members have written that spinal fusion surgery was the most painful experience of their lives. In all honesty, I didn’t think it was exceptionally painful compared to other surgeries I’ve had. Actually, there have been times every day this week that I have felt worse than I did in the days after that surgery.

I suppose it doesn’t help that my affect is rather flat through all this. My Midwestern stoicism is very deeply ingrained in me; I seldom look stricken when I’m in pain. I suppose that it is hard to believe me when I mention that today I felt worse than when I was in labor with my daughter, even if that is a true statement (and I had back labor for 44 hours, half of which I endured with no pain medicine).

Here are the diagnoses on my chart at my family’s doctor’s office:

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There are several chronically painful conditions on that list.

My chart at the local orthopedic center has a bit more detail:

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I don’t know how I could keep this mess to myself, to spare people the details and reality of such pain, without being a fundamentally dishonest person. I am the sort of person who has almost no mental real estate for keeping secrets, and all of that space is reserved for secrets that belong to other people.

Lately, I’ve heard that I must be blowing this struggle out of proportion, for I’ve been through worse in the past. For example, people will mention that it must have been harder to leave everything behind but a couple suitcases when my daughter and I relocated 2,000 miles away during her infancy. I assure you, dear reader, that my past struggles were very easy indeed compared to what I face now. Nothing is easier than quitting, no matter what the consequences of doing so. Through quitting, you take the power of choosing the outcome, even if the result is awful. Quitting is not an option now. I must bend without breaking to keep everything in place, no matter how bad I’m feeling.

I will close this post with images of this season’s enfolding growth, and I hope that my mind, body, and spirit begin to reflect this renewal.

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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