Knowing abilities

One of the worst things about having and having to register a disability is that the authority over your own body is placed in the hands of another.  Or at least they often think they have authority or expert knowledge.  You should think that it can be taken for granted that, if nothing else, we are all experts on ourselves.  Yet so many responses to disability want to remove of us even that.

I should be able to feel whatever degree of pain I feel, and be honest about it.  Doctors want to tell us, however, that something "won't hurt very much," or "can't be all that bad."  "If you are able to make it through the day, it can't be that bad," "trigger point injections don't hurt very much."  It delegitimizes our experiences-- makes us feel like we are weak or some kind of freaks.

It is also exhausting being told what you can or cannot do on account of your pain.  For years, I did not jog or do any really difficult cardio because my back doctors told me I couldn't-- they forbade me to go running.  Then a few months ago, I am suddenly told that that diagnosis was crazy-- in fact, cardio is said to be one of the best things a person can do for one's aching neck because pain-causing cortisol is destroyed. 

When I first wanted to go to Japan as an undergrad, I went to speak with the disability specialist at Seattle U.  He would not believe that I could climb Mt. Fuji, even in light of other successful hiking endeavors.  I really wanted to prove him wrong (alas, Fuji-san was closed while I was in Japan, however, I did "summit" Mt. Takae). 

Now I am worried about telling any of the health care professionals on my "case" that I'm training for a triathlon.  Just telling some of my family has received a raised-eyebrow response.  I work my ass off every day at the gym despite chronic pain, why would a triathlon be any different?  It's just making my training more specific and being willing to accept "no pain, no gain," which any athlete must do.  Working out really hard hurts anyone to some extent- muscle pain associated with muscle gain.  I would just like to have the benefit of the doubt and the ability to judge for myself what I can and cannot do.

I have terrible asthma as well, and that's one reason I was so willing to give up running in the first place.  I don't much like running, but now I feel like I have to do the triathlon to prove something.  Why do I have to prove my ability to do something that any other 22-year-old woman would be assumed to be capable of? 

Then it's the medications.  I am now told that I shouldn't be placed on certain medications because, on account of my age, I am succeptible to addiction.  It is exhausting having to deal with this god-like guardianship doctors hold over their patients sometimes--  I was on Vicodin for years without getting addicted, yet somehow I haven't yet proved myself.  Apparently, my "stupid punk ass kid" perceived subjectivity trumps my "in obvious pain" subjectivity. 

I think this is what they call "medical patriarchy," but I'll have to look it up when I'm less pissed off.  In any case, I'm training for a triathlon in June and another in August, and the next person who hints at me being incapable of this feat is going to be attacked by my bottled up rage/silence.  I guess I should stop being quiet about it-- "quiet desperation," alas.  Grrr.

Trigger Point Injections

So the series of cortisone shots I get are apparently called Trigger Point Injections.  I got them for the second time last week, and will be getting them once a month for the time being.  This is in addition to the PT (by the by, my PT says that cardio workouts are supposed to be the best thing for neck pain because cortisol, which causes pain, is destroyed-- which really doesn't explain my aching neck every evening but nonetheless), is meant to "cure" me.  I have more faith in the therapy dog (his name is Mogul, by the way).

I wonder if I can ask specifically to do some therapy with the dog.  That would be awesome.  I love animal assisted therapy.  I truly believe that my cats help me more than anything else, if only because they relieve stress.  Wah, who doesn't love the kitties! <3

Anyway, I looked up trigger point injections, and they, along with PT and massage, seem to be the primary treatment for "myofascial pain syndrome".

Here is the description from Healthcommunities.com:

Trigger point injection (TPI) is used to treat extremely painful areas of muscle. Normal muscle contracts and relaxes when it is active. A trigger point is a knot or tight, ropy band of muscle that forms when muscle fails to relax. The knot often can be felt under the skin and may twitch involuntarily when touched (called a jump sign).

The trigger point can trap or irritate surrounding nerves and cause referred pain — pain felt in another part of the body. Scar tissue, loss of range of motion, and weakness may develop over time.

TPI is used to alleviate myofascial pain syndrome (chronic pain involving tissue that surrounds muscle) that does not respond to other treatment, although there is some debate over its effectiveness. Many muscle groups, especially those in the arms, legs, lower back, and neck, are treated by this method. TPI also can be used to treat Fibromyalgia and tension headaches.

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Anyway, it isn't supposed to hurt :(  Now I feel terrible for feeling terrible.  But anyway, it did hurt quite a bit in certain areas, and not at all in other areas.  Well, I can vouch for its temporary effectiveness.  Only lasts about three weeks, but the pain is definitely decreased.  Hrm.

New PT

I've started with a new PT this week.  I will be going in twice a week for six weeks.  How irritating.  At least we found someone close to my work/school.  But honestly, I really have zero faith in PT at this point.  Trying to be hopeful, well, at least pleasant to the people there.  There's a therapy dog who is quite cute.

Anyway, they did this weird thing where they shot electricity through me.  Then it made this constant beeping, which became more frequent when the electric shooting thing touched areas where the pain was worse.  So they could tell that my left side is worse (by the by, my physiatrist can tell this just by touching me back and neck-- talent!).

I hate doing the darned exercises.  You have to do them twice a day indefinitely.  I hate that.  Just having to get up ten minutes earlier and going to bed ten minutes later.  The lack of muscle-building feeling plus the sudden pain in already pained area.

I will focus on the joy of seeing the dog.

Addicted to Exercise

Oh, that title looks so silly, but it's the honest truth.  Somehow, in the past month, I have become an exercise addict.  Seriously.  I went to the gym twice today.  On Wednesday, I'm planning to go twice again, weights in the morning (45 min), Tai Chi in the afternoon (one hour), and then my usual cardio with stairclimber and eliptical (1 hour).  I feel a bit like I'm waiting for the ebb to come ripping me back out to sea (how's that for a metaphor?), but so far, all is good.

The thing I noticed recently was that my neck doesn't hurt when I'm really working out.  Sweat slicking back my bangs working out.  It stops hurting for a bit, so I just want to prolong it.  I'm sure this will lead to other things-- my neck, the boney part, was hurting this weekend.  What's that about?  There was joint pain down my spine, but the muscle was fine.  But I didn't really care about that pain-- so much less than what I'm used to.  And this kind of muscle pain is nice.

I've also realized that my mind works better if I read while doing cardio.  I know it sounds like that would detract from the work out, but somehow it makes it more intense.  Not sure how that works out.  I've been reading C.S. Lewis' The Problem of Pain and Greenberg's The Body Broken while working out this week.  The theological text was a little rough at first, but no worries.  I'll need to do an overview when I'm done.  Greenberg's text is pretty alarming-- the idea of having a terrible accident then feeling better for twenty years and having it all come back.  It's my worst nightmare- if ever I get through this-- the idea of it returning someday.

Anyway, I'm thinking of training for a triathlon, since I'm going to be working out so much for temporary pain relief anyway.  I know it's a little sad, because I'm only addicted to the passing cessation of pain, but I'll take what I can get.  Especially since I'll be going to PT for the third or forth go around (not session, understand, but entirely new PT and series of sessions), and have no hope that it will help.

But then, there's also the whole being booted from your disability community if your disability heals.  I should do a post on that sometime- hm....

The problem with pain

The problem with pain is that it never manifests simply as pain.  Pain in itself is bad enough, but as it is so often the effect of some other ailment or unfortunate occurrence (but not always), it often acts as the cause of so many other conditions: depression, insomnia, fatigue, irritability, etc. etc. etc.

It is, I think, depression that is the worst.  I don't mean to blame my pain for all of it; in fact, I've had depression on and off since elementary school (isn't it funny- we "have" depression like we "have" sex.  The possessive nature of certain wordings always fascinates me).  But it would certainly be unfair to blame my depression for my pain, though they often do make fine dance partners.

Stress and sorrow always seem to worsen pain.  In my case, of course, it is the simple fact of the pain's muscular nature (I just found out a fancy new way to refer to my precise condition-- myofascial pain syndrome) that allows the moods to aggravate it.  Consider the ways in which we all are affected by anxiety-- it is simply multiplied by the already plagued muscles.  The worst of it, however, I feel comes from the way that a pain so cleverly handled/ignored can sneak into the subconscious and leave one crying without feeling any genuine reason.

Today, I was filled with melancholy.  Everything made me emotional; much like I always cry at a Hallmark commercial (a bit cliche, yes, but I'm too depressed, ergo this post, to come up with something cleverer), I found myself in tears at the smallest of things.  Advertisements for comedies, a review of Lottery Ticket (they mentioned Bow Wow's friendship to a co-star), listening to a piece of The Old Man in the Sea in the car (and not even a sad bit- they were talking about baseball).

But also, there was the exhaustion.  It feels in this case much like having had one too many drinks.  There's some dizziness to it, and it almost tricks you into thinking you've caused your own weepiness.  (Small note- having actually had a few glasses of wine at this point, I actually am feeling quite a bit better-- wine always helps a little, despite being a depressant.  I wonder why that is?  Relaxation aid?  Antioxidants?).  In reality, however, I know that my trigger point injections are the culprits.  I had almost twenty of them on Wednesday and, whatever Web MD (or my dr at that..) might say, they hurt.

Well, one hurt quite terribly, anyway.  A few didn't hurt at all.  Most of them, however, just hurt a fair bit.  Afterwards, the entire span of my back ached.  I know it will feel better tomorrow, but I know the realization that I will be having this treatment again and again, at least once a month, for the time being (and now the Buddhologist in my yells 有時!  Which is to say that the time being is now is forever, but that's another story...). 

Such agony relived.  That's not even the worst of it, alas!, I return to physical therapy (can't say PT anymore after trying a physical trainer) for the forth time since the accident.  So, I suppose in addition to all the other factors, the loss of faith can also be quite dismantling.  I don't merely mean religious faith, but the loss of any sense of confidence in medicine and, eventually, humanity.  (Side note, again: I really should get to reading C.S. Lewis' The Problem of Pain and see what insights he had into the religiousity of pain).  Yes, I know that pain is so often construed as a blessing in the religious sense, but even Jesus' physical suffering was short-lived, and Buddha Gotama at least had a choice in his life.  To have long-lasting terrible pain with no hope of its end apart from death and no choice at all feels both silencing and killing.

At some point, I will have to talk about the death thing in more detail, but it leads to some dark philosophy, which I'm afraid might lead to my institutionalization versus recognition as philosopher.  I should include one of Nietzsche's essays on the benefits of pain as well.

The real trouble is that as much as I can philosophically and theologically believe that there is some good in this pain, I have an ineffable urge to rip it from out me, cast it to the ground, point at it, and call it "enemy!"  Which is ridiculous.  We all have pain.  Insert platitude here.

In any case, I can feel all of these elements eating away at me-- the pain, the depression, the faithlessness, and the exhaustion.  So much of me wants to enter the "academy" to speak to these issues autoethnographically (it is one thing to speak of pain, another to live it constantly), but oh how the pain likes to taunt.  How can I consider pain deeply while the pain itself distracts the mind?  The physical is such a powerful space.

Well, I will get back to this later, and actually bring in some of the thoughts I've only mentioned from far greater minds than my own.  Just received Woolfe's On Being Ill from the library, which should talk about her migraines and depression, I think.  It's short, so I'm expecting to read it soon and tie her sufferings in to all of this. 

As said, I am exhausted, and will now sleep.  Sorry for the thousand tangents.  I'm not unconvinced it isn't consistent with sister speak :)