I know that the entry a few days ago, entitled “Hope,” likely sounded, well, hopeful. And, at the time I wrote it, I was in that kind of space. However, I’ve actually found myself on an emotional roller-coaster since the Chronic Myofascial Pain diagnosis. One moment I’m feeling grateful for more information and for finding a doctor who believes he can help; the next I’m feeling anxious and depressed and overwhelmingly fatigued trying to cope with not only my physical stuff, but with trying to absorb a new way of interpreting the signals my body is sending.

I’ve been doing some web-surfing on the topic of chronic pain; I’ve been reading Fibromyalgia & Chronic Myofascial Pain: A Survival Manual; and I am trying to decipher some meaning from this. After all, this is not a trivial kind of development. I’ve received a verdict, even if it’s still somewhat tentative, of a chronic disease.

Ugh!

So, let’s talk about: how do you pronounce the name of this condition? What is it? How did I get it? What do I do now?

In case you’re wondering, the proper pronunciation of myofascia is my-oh-fash΄-a (so that fascia is pronounced similar to “fashion”).

I’ve been learning that this is not exactly an easy condition to explain. And, there seems to be quite a lot of information out there that is not consistent with what the Survival Manual says. For example, both my doctor and several websites call this affliction Myofascial Pain Syndrome – that is, by its former name. When this condition was given “disease status” it became known as Chronic Myofascial Pain about six years ago. It’s a little disconcerting that my doctor is using outdated terminology.

I’m trying to come up with simple language, with information derived from my reading, to try and describe what it is we’re talking about – but even Starlanyl & Copeland (2001) struggle with this task. They say, “one of the problems in discussing myofascia is that there is no familiar metaphor to help…visualize what and where it is.” (p. 17) They then indicate, however, that myofascia can be described “as the thin and almost translucent film that wraps around muscle tissue (think about the sticky white film you see covering some of the chicken parts you buy at the butcher shop).” But, really, it’s much more, given that myofascia can be visualized as a gauze- or web-like network permeating the entire body. Further, they indicate that “malfunctions due to trauma…can bind down the fascia. Restrictions…can create pain of malfunction throughout the body, sometimes with bizarre side effects and seemingly unrelated symptoms.” (p. 19) Myofascial pain is caused by “trigger points,” which are “extremely sore points that can occur in the myofascia in taught, ropy bands… or as painful lumps or nodules.” In essence, “a myofascial trigger point is a hyperirritable area of skeletal muscle.” (p. 23)

OK, OK! I know, enough already. Yes, my eyes glaze over when I try and understand this too…

You might be getting a little bit of the picture, anyway. I have tight, taught muscle tissue that is causing chronic pain (primarily in my left leg and foot, but also in my other extremities to a lesser degree). I’m theorizing that this inflammation of muscle tissue is pressing nerve against bone in my left leg, leading to the tingling and numbness in my left foot, especially the toes.

Here’s the short story of how I believe I got myself into this state…

In the few months following the episode I described in the last post (the winter of 2004-05), the stress at work was monumental. While still in the process of learning my job and becoming acclimated to the campus and a new working environment, I was directed to eliminate three of the programs in my division, requiring me to inform people that their programs and their jobs were going away. Additionally, after months of frustration, I let go the administrative assistant I had inherited. I also dismissed an instructor who was behaving badly and had likely gone off his medications. In sum, I dealt with multiple personnel and student-complaint problems, one after the other, all the while attempting to perform the myriad other responsibilities of an academic dean. And, many days during this time, I nearly froze to death in my office – a space that, on the surface, looked nice, but that had large windows which allowed the brutal east wind from the Columbia Gorge to permeate my working environment. If you will: imagine a tense, stressed-out guy, huddled and shivering in his office all day every day, and you can sort of get the picture: my working conditions were absurdly sub-optimal. One morning in May 2005, days after an intense episode of tortuous verbal abuse directed my way from the big guy, I awoke with incredible tingling and burning sensations in my left foot.

And, now, here I am. I went in to have blood drawn today so that we can rule out other possible explanations for my symptoms. I am gradually taking myself off the anti-anxiety medication I was using as a sleep aid every night (with the warning and the knowledge that my sleep and anxiety issues may worsen for a time). And what I’m doing now is trying to learn as much as I can about this disease before my next doctor appointment, which will happen at the end of September. I’m hoping that I can find enough energy and mental focus to be able to digest a lot of this information and be a fully-informed participant in my treatment plan.

Soundtrack Suggestion

At first I was afraid I was petrified
Kept thinkin’ I could never live without you by my side;
But then I spent so many nights
Thinkin’ how you did me wrong
And I grew strong…

Did I crumble
Did you think I’d lay down and die?
Oh no, not.I. I will survive
Oh as long as I know how to love I know I’ll stay alive;
I’ve got all my life to live,
I’ve got all my love to give and I’ll survive,
I will survive. Hey hey…

(“I Will Survive” – Gloria Gaynor)

At my last workplace, I was only a couple of months or so into my new job when I participated in a “leadership workshop” with a group of fellow administrators. Things went extremely well, I thought, for just about the entire time. As the group-work unfolded, folks were increasingly talkative and open and, for the most part, genuinely engaged in examining our personal communication and leadership/management styles.

That experience ended very poorly for me and everyone involved, however. As the two-day session was wrapping up, our “big leader” stopped by to check in. He had arranged for the workshop to happen, but had not attended. When it came time for the group to offer up a report on our training experience, there was apparent reluctance to do so. As the new guy, it didn’t really seem my place to be the spokesperson, but one of my colleagues mouthed to me from across the room: “talk Jim.” Of course, that was all I needed to raise my hand and proceed to gush forth with my version of reality.

As it turned out, that action turned out to be one of the biggest faux pas of my professional life. I was interrupted mid-report and soundly lambasted for my opinions and “negativity.” I actually didn’t think I was being negative (rather, merely attempting to be an accurate communicator regarding the sense of the group), but it was certainly perceived that way, and the big guy’s defensiveness turned instantly into attack mode. I was the target. And, boy, did it hurt.

Things were never the same for me after that; I spent two years in place where I knew I was not a fit. In retrospect, it would have been a really good idea for me to leave the organization at the end of that workshop, but you know how it is: I needed a job. I can’t help thinking, though: even if it meant unemployment, I might be a physically healthier person today had I immediately resigned.

So, here I am now in a new organization. And I spent all day today at a retreat with my fellow academic administrators here. I participated fully. I said what was on my mind. I spoke my truth. I felt listened to.

Very good!

Soundtrack Suggestion

What if there was no light
Nothing wrong, nothing right.
What if there was no time?
And no reason or rhyme?...

Every step that you take
Could be your biggest mistake
It could bend or it could break
But that’s the risk that you take…

Oooooh, that’s right
Let’s take a breath, jump over the side.
Oooooh, that’s right
How can you know it when you don’t even try?
Oooooh, that’s right

(“What If” – Coldplay)

I have been posting entries here for nine months now. When I put together the first little note, last Thanksgiving Day, I wasn’t at all sure where I was going with this. I still don’t know that I’ve ever really defined a direction, but at this point, when I’m away for as much as five days now (the length of time since my last entry), I start getting a little antsy…thinking it’s about time to write something more. Besides: when that many days of living go by, a lot can happen. And, many things have happened in my life lately.

Some of the issues I talk about here come under the heading of random expressions of joy and angst. And, let’s be honest, in my writings I know I’ve focused more on angst than joy. But three days ago was my birthday, and though I was experiencing the usual self-reflection and anxiety about where I am at with my life (angst), there was some measure of joy as well. One of the best things to happen, mostly because it was so unexpected, was to receive a singing (“happy birthday to you”) phone call from friends in Portland. Although the day itself turned in to be one of my longest work days in a while, it was great to be remembered that morning.

I took the occasion of having a birthday, in tandem with working four-day weeks at the moment, to make an appointment with a doctor here for a check-up. I’ve written previously about the physical symptoms I’ve struggled with in recent months, speculating about such conditions as peripheral neuropathy and post-traumatic stress disorder. I know there’s a bunch of stuff going on with me physically that is not good. The stress I’ve endured the last two and a half years has taken a toll that I am aware of every single moment of every single day. And, the approaches I have used so far to address my symptoms have yielded only modest progress toward health. Through my chiropractor, I have used deep-tissue massage, ultra-sound, and chiropractic adjustment. I saw an acupuncturist for months, enduring the needles and moxibustion. I have continued on with the moxibustion approach myself, as well as frequent self-massaging of my legs. I take hot baths, and try to calm myself psychoacoustically. I read Pema Chödrön books and other spiritually-oriented tomes. And, I’ve just started reading Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping. With this last book, I’m attempting to get a handle on all the psycho-neuro-biological dimensions of the human experience and how stress has led to the physical symptoms I’m experiencing. The physician I was seeing in Portland was of no help in addressing my condition, although he agreed with my personal assessment of how I got to this point and provided some medication to help with my anxiety.

The first week I was at work here, I asked around for suggestions for local doctors. The second week I decided to make some calls. The first doctor had not taken new patients in five years, I was told. However, the receptionist for the second doctor took down some basic information and consulted with him. Yes, I was told, the doctor would see me.

My appointment was two days ago, the day after my birthday, at the end of my third week of work. I was nervous about pursuing this, but, at the same time, very pleased with myself that I was following through on my commitment to focus on getting healthy. This physician seemed to be quite perceptive about my condition, had a name for it, and expressed some confidence that we could find an appropriate treatment. This was incredible news! It’s his view that I am suffering from Chronic Myofascial Pain, which explains the ongoing weirdness happening in my extremities, especially my left leg and foot. Although I’ve got blood work ordered to rule out other possible causes, what I’ve learned about this condition so far is indeed a fit with the symptoms I’ve been dealing with. I’ve already purchased a “survival manual” for suffers of this condition.

After all the hopelessness I’ve felt having endured this condition for over 15 months, I’m now hopeful that I can actually, eventually, heal myself. Hope, especially around the time of my birthday, is quite-unexpected. (But wonderful: don't get me wrong!)

To round out this report of recent developments, I’ll mention that I attended the University of Oregon summer commencement ceremony yesterday morning, as Beccalynn (Katrina’s daughter and Bryan and Tamson’s sister) is within a few credits of finishing her degree and decided to participate in graduation at this point. It was a beautiful day and I was delighted to be on hand for another rite-of-passage occasion. I’ve known Beccalynn since her late adolescence, and to see her now, married, the mother-of-two, and a college graduate, is another sign of hope for the future.

Wow.

Last time, I talked a bit about cell-phone users and the annoying way their toys are used. I guess I’m still on the same rant today. The soundtrack of our lives in recent times, it seems, is no longer provided by the likes of Mozart or The Beatles or Death Cab for Cutie. Rather, the ambient, background sounds we all live with in the present day are dominated by the buzz of all-too-loud voices speaking gibberish into pocket-size electronic devices.

I honest-to-god believe this.

Then, combine all those cell-phone voices and ringtones with the noise pollution of cars, airplanes, jackhammers, blowers and mowers, and we’ve got ourselves a real problem.

Global-warming, terrorism, and wars in the Middle East aside, I conclude that we’re increasingly unhealthy and at-risk because of the noise pollution in our lives.

On the same day I wrote that last entry on “noise,” I rediscovered, in my music collection, a two-CD set by Dr. Andrew Weil called “sound body, sound mind: music for healing.” The message provided there coincides with my opinion on the effect of sound. Says Weil:

“Sound is an especially powerful influence on the human nervous system. It can harm and it can heal.”

I think that the noises we are subjected to in the course of a typical day heavily contribute to the amount of stress we experience. I know for certain that that’s true for me, anyway.

It has occurred to me recently that I may be afflicted with a condition called post-traumatic stress disorder (PTSD) as a result of the conditions of my life over the last two-plus years. If that’s true (I have no “diagnosis,” just suspicion), then perhaps I’m just flailing about and over-reacting here: I’m simply hypersensitive as a result of the state of my being right now.

But here’s the deal: I would hope that we humans could find a way to exist without being on sensory overload most of our waking hours.

I suspect that I’m not the only one who experiences their existence this way and wishes that things were different.

In the last couple days, I have started to use the psychoacoustic approach provided on the Weil CD set in an attempt to address my unacceptably high anxiety levels. I’m hoping that I can get some results with this method and that I can energize and heal my body and soul.

I believe there’s way too much noise in the world. I’m particularly annoyed with our use of cell phones, but, just generally, I think this society is way too noise-polluted. Tell me: just where does one go these days to get away from someone talking on their phone?

Now, don’t get me wrong. I’m not basically an anti-cell-phone person. My only phone is a cell phone. And, I own the latest technology; the phone does a lot of things a phone doesn’t really need to do: like take pictures (although I’ve never used this particular feature). I also own and use one of those Bluetooth devices that allow a wireless connection between an earpiece and the phone. (Which, to date, I’ve never used in public because I think they look so stupid on people. But that’s another issue…) However, I try mightily to NOT inflict my personal (and private!) conversations on the rest of the world. Why is it that so few people these days have any sensitivity to this issue? Why is it so generally acceptable to talk on the phone wherever you are?

For me: I’m tired of it. I’m tired of the “cell-phone voice” that I know immediately when I hear it. For example, I’m in a coffee shop reading a newspaper, with the normal background hum of voices and activity. Then, a person a table or two away takes or makes a call, and before I even look up to confirm, I know that voice . It’s somebody talking on their phone. Dang, is this annoying, or what!?

My new hair stylist here in Roseburg informed me that some salons are requiring clients to check their phones at the desk before services are begun. I haven’t heard of this practice anywhere myself, but, for one, I would support it. I’d simply leave my phone in the car. What? I can’t wait a half-hour to make a call? And, I support the movement of some places like movie theatres to install technology that block cell-phones from working. Now that would be a giant leap forward for mankind.