Friday, November 12, 2010

Before and After and Before


Two pieces of information before I get going. First, the contest to win one of two 2011 The Seated View calendars is open until 6 PM EST on Sunday. And second, if you live in the Toronto and vicinity area, there's a really interesting public forum on Thursday, November 25 called The Most Exciting Time Ever in the History of the Treatment of Rheumatoid Arthritis (surprisingly, with no exclamation marks). For more information on the forearm and on how to sign up, go to the link and scroll down to the fourth item. And now, back to the regularly scheduled program…

Before, the pain was with me always, coloring everything I did. Before, my shoulder, neck and back were tight, always, clenched into a fist that never let go. Every movement was accompanied by hurt, everything I did had its own soundtrack of pain, sometimes not too bad, just loud enough that I was very aware of it, sometimes blaring, at the forefront, in my face, so much that I was surprised the rest of the world couldn't hear it. Putting a cup in the microwave hurt, cutting a piece of lemon hurt to the point of reconsidering whether I should add lemon to my home water at all, making lunch hurt and so did petting Lucy, brushing my teeth, lifting a glass, crossing my legs, going to the grocery store, writing notes, pressing the buttons on my phone and now that I think of it, sitting still and reading a book.

Only a month ago, I was seriously considering having to stop working. Not just MyRACentral, but everything else, as well. Blogging, The Book, photography. Using Photoshop really messed me up, writing really messed me up, browsing the Internet really messed me up. It's why I had to develop the 30 min. rule, got myself a timer that would tell me when to back away from the computer, but even that wasn't working. And neither were the freezing and steroid shots I’ve depended on for so long, having come to irritate my shoulder instead of relaxing it.

And then I was given a miracle. In a moment of desperation, of "don't know if it'll work, but we've got no other options," my doctor gave me a referral to physiotherapy for ultrasound. And after the second 10 min. treatment, my life changed.

For the first time in months (years?), the pain was manageable. More than manageable, really - or should that be less? The fist in my neck and shoulder and back relaxed, letting go of the vise grip it's had on me for so long. The pain was at such a low level that it could be filtered out, be not there and had you asked me, I would have said I was not in pain. I might've been had I thought about it, really paid attention, but I didn't and it wasn't there, had left me alone and I left it behind without a second thought. I moved on and dived into my life with the joy and abandon of a dolphin leaping above the waves and splashing down again. I played with this new ability that let me do what I wanted to do, let me catch up, add new, work harder and longer than I have in months (years?), going to bed every night tired, but the kind of tired that comes from activity. The kind of tired that disappears with rest enabling you to do the same thing all over again the next day. Codeine was no longer for several times a day, every day, but once every few days and then one dose was enough and my other painkillers were cut in half.

I'd forgotten what it's like to not being pain, to not be drugged. Had forgotten the lightness of your mental step, the play of a mind that is unimpeded by pain and by medication and it's quite possible I got a little carried away. I got involved in things, had enough energy to step up to the plate and tilt at windmills (if you will pardon the mixing of metaphors) and I did that in addition to my regular work, plus some extra. It felt like I could actually run the world, actually have an impact. And then, after a couple of weeks of working like a regular person, of being extra - new word alert! - advocacious (as in being involved in advocacy), last Friday, I felt the pain again. Not much, but it was there, so I went easy on myself on Saturday, did some writing on Sunday, went back to work on Monday and when I woke up Tuesday, my old friend pain was back at full throttle.

And I'd forgotten about the pain. Forgotten how pain in one area ripples, spreading to affect everything else. You hold your body a little differently, do things slightly differently to ease the strain on the injured area and by doing so open conduits for the pain to ooze through into the rest of your body. I'd forgotten how it makes everything harder, adding weight to each movement so that lifting my hand, leaning forward, crossing my legs or making a phone call is done while wearing lead weights.

I'd forgotten about the tired. About the pervasive fatigue spreading through every part of your body, making you feel as if you're stuck in treacle. Forgotten how you move through force of will, spending some time thinking about the movement before you do it, gathering strength, gathering will before you can. It's a split second’s worth of gathering, sometimes two, but it is an eternity compared to the effortless, thoughtless motion when you are without this fatigue.

I'd forgotten about the effect on your thinking, your brain moving in a dense, gooey fog, trying to grasp ideas, yet not quite being able to get a firm handle on it.. And when you do sit down to write a blog post,, even to write a chatty note to a friend, nothing is there in between a few concepts, no bridging, no mental leaps, no nimble dancing with a notion, words and phrases tumbling out in a beautiful kaleidoscope. Instead they lumber, their heavy awkwardness dropping onto the page like lumps of misshapen clay.

I'd forgotten. Two weeks without it and I'd forgotten. And that is one of the good things about pain - the fact that once it's gone, the true reality of what it is like to live inside of it melts away like morning dew on a summer’s day and you can go back to your life, stepping around the fear of it coming back. And then it does and you remember and having been without it somehow makes it even harder. I spent most of Tuesday wondering how I ever got anything done with this yoke around my neck and that is the other good thing about pain. That you adjust, get used to it and somehow figure out a way to live your life as much as you can anyway.

I went back for ultrasound yesterday and it helped again, turned down the pain. And it makes me believe that if I had weekly ultrasound treatments, I could keep working, keep living my life, push up against the restricting boundaries caused by this pain. Of course, now that I have found this miracle, it is about to be taken away. St. Michael's Hospital is closing the outpatient physiotherapy and chiropractic clinic, leaving me and everyone else who went there to seek treatment at private clinics. Which costs $50 a treatment and who can afford that? And yes, I will be advocacious again and write the CEO, but I'm pretty sure reversing the decision to close the outpatient clinic is beyond even my powers of persuasion. And I dread what will happen when the treatments have to stop.

11 comments:

Donna W said...

I'm wondering if a portable ultrasound machine will work for you. I see that Amazon has them for around $70 (in the U.S. anyway). It will obviously require another person to actually administer the treatment for you--not sure how much training s-he should have. The couple reviews I saw didn't mention it.

Jocelyn said...

Oh, NO!  That's terrible news, in the midst of the good news that the ultrasound provides such tremendous releif.  I could go on and on about how frustrating it is that the medical system (there, apparently, too) just doens't seem to grasp how necessary ongoing management of chronic conditions is, and that prevention (as in, being able to do these treatments regularly so you don't hit that place of Pain) is the best way to do medicine when possible; but I know that you know that.  I hope that your advocaciousness works - I truly, truly do.

Gaina said...

((HUG)).  This makes me so angry. >:o How DARE they leave people in pain with not even the possibility of offering something for those who can't afford private treatment!

I would suggest whoever makes these decisions should read your blog. Do you know who you'd write to in order to try and make that happen?  What about the therapists themselves? Surely if you could persuade THEM to make a noise about offering some kind of service for patients who can't afford the $50 then the practice manager whould have to listen?

TheBoy said...

Donna makes a good point. It may be worthwhile asking your doctor and the physiotherapist what they think of home ultrasound machines. Or if they have recommendations for where a good one can be acquired. $50 a treatment adds up quickly and, if it's recommended and possible, the option may be a good one to pursue.

Of course if advocaciousness prevails then the point is moot.

Becky (knittingyoyo) said...

First it is amazing when you are not dealing with constant pain how life looks totally different. Even when it is somewhat better you are afraid to speak it as you might "jinx" it. Next, thanks for your perspective. Most people have no idea what it is to live with chronic pain. Yes I am sitting here but every fiber seems to be screaming so as not to let me forget the disease is still there. Of course then we have to deal with the/any healthcare system and those nameless people who make the decisions about our care and have no idea what is really going on. Here's to hoping for you to be able to get the beneficial treatment and it not cost out the wazoo.

Julia said...

I am sorry about the flare up. And the outpatient clinic closing.

Something else to think about is how do people get trained to use these ultra sound machines? Maybe students need patients to practice on, and they will work for a much lower rate. In situations like that, the students have usually practiced a lot on eachother already and are supervised by an experienced teacher

Diane said...

I hope you find a solution to the ultrasound availability...I was so happy to read how good you felt and so let down when you wrote that the clinic was closing.

AlisonH said...

I'm still back at the it works on the pain!, lost in amazement. Really?! REALLY!!!? C O O L !!!

I'm looking at Donna W's comment, and if that ultrasound on Amazon would help, count me in for a contribution towards it. We have got to give you this on a permanent basis!

Trevor said...

Yikes!  That's awful.

It's not the same thing, but it reminds me of the several times that my psychiatrist has offered treatments that aren't covered.  He knows I'm broke.

I hope you write the letter to the CEO, but I know it's already a done deal so it won't change their decision, but it might make you feel a bit better, for awhile at least.  You should also write to your LHIN since they're the people who make the funding decisions.

Anonymous said...

My heart is crying for all of you.

laurainalameda@gmail.com said...

have you tried a TENs unit? It works very well for my shoulder spasm ( it can pull my head down to the side when it really starts up.  Ironically, the thing that irritates it the most is using the ultrasound machine for m job.)  Anyway the TENs was recommended to me by the PT, and it has been a godsend.  I can't take narcotics at my job. No job-no insurance-no Enbrel-no life.  

Anyway, i feel for you.  Toronto is such a bi city- it seems ridiculous that there is only one out patient clinic. ( I'm not doubting you, I'm just saying it's not fair.) I really am sorry. I would consider contacting the private clinics and seeing if some type of price break could be worked out. But perhaps that is not allowed in Canada.  In the States it happens all the time.