Who am I without the pain?

I resisted this question when it was first asked of me, but with surgery looming, it has crept back into my thoughts. The premise is that the pain has gone on long enough, been persistent enough, that it is not just something I live with, but has become a part of who I am. Honestly, I don't know. Here are the bits I do know. The bits that I would hopefully forget if there weren't a blog to read about them in years from now...

I first recognized the pain as something more than a passing thing in June of 2003 -- 4 1/2 years ago. We were camping at Waterloo and the walk to the beach became torturous, so I sat a lot, something I would learn later only made things worse.

The pain has three parts that crop up individually and in different combinations. The first pain to appear was in the front, right at the crease between leg and groin. It felt like the tendons in this area would not "hold" when I walked -- like my hip was about to give way -- and this area is almost always tender. The weakness I feel in the hip seems to come from here. The next to appear was in the piriformas muscle -- the big one that goes over the back of my hip. It ties itself up in to a big painful knot that is hard to stretch at all. The third is a pain on the outer hip. This is the least troublesome of the trio, though it has had its moments.

Over the course of the four+ years, I have seen the flexibility and strength on my right side decrease markedly, I have become increasingly unable to walk or stand for long periods of time (esp. on concrete), I cannot sit on overly soft couches or overly hard chairs for more than a few minutes, I cannot sleep on my side (often being on the left with my right hip in the air hurts too), I cannot sleep for more than a few hours, I cannot step up more than about a foot on the right, I cannot drive for more than about two hours without suffering for days after.

I am still active -- I lift, yoga, skate, dance, and bike. These make me strong so that helps keep the hip in check in the big picture, but they also, all except for the bike, cause me pain short-term pain. The bike has, in many ways, saved my sanity of late -- it is what has allowed me to be out in world... moving, active, and without pain. I don't know why I don't hurt on the bike, but I don't. When I can't walk and I can't sit anymore, I've been able to pedal... and a 35 mile ride does a lot to counter the depressing pyschological effects of the limitations noted above.

Some periods have been worse than others. The summer of 2005 was particularly bad after travel had me sitting way too much and off my regular exercise schedule. Somewhere in 2006 I had another bad period that I finally admitted to when I realized that I could not walk to/from E's school (3 1/2 blocks) without bumping the pain level up two notches. Not being one who is always comfortable with her own limitations, I found I could meet E's desire for a mommy escort by riding my bike -- but every time I get on the bike to take her to school, I am aware that I can't walk that far on concrete any more.

I don't sleep well either. If only I could sleep... maybe I could deal. But 3am would often find me wandering the house with a cloud of doom hanging over my head, hurting. I finally learned not to use this time to talk with spouse or send e-mails...

The docs have never been very helpful. During a physical one year, when the doc asked me how my general health was and I told her about the grayness the hip had brought to my life, she told me I could make a separate appointment to talk about that! Needless to say, I have never felt well tended by my primary care physicians who could not even manage to decently medicate for the pain. Specialists did little better -- they would bend and twist me and look puzzled at the disconnect between my flexibility (high) and pain levels (also high). The surgeon was better. He was cautious -- did more x-rays and MRIs which revealed a labral cartilage tear -- ordered extra (painful!) tests to see if that was the cause of my pain and he offered a solution (surgery, not surprisingly) . But even he would not help me manage the pain between seeing me in the Spring of 2007 and now, when I am actually having the surgery.

The real kicker with the pain is not its intensity, per se, but that it is always there. I haven't been below a 2 (out of 1o) on the pain scale for years and I'm often running at a 4 or a 6, but when it goes on at those higher levels for days on end, it can really wear me down. Those who have seen me lose it over the pain are usually seeing the stress of on-going pain more than a momentary pang (though I have those too). Those who live with me can attest that the pain creeps up on me and steals my good humor once I've had a bad run of more than a day or two of elevated pain levels. By this summer, I was taking handfuls of ibuprofen (1000mg) to dull the pain just a bit -- enough to function and sleep.

My greatest fear about Friday is that the surgery won't really fix it. The surgery may go beautifully, but I may still have pain. My close people have been hugely cheery, optimistic, supportive, but I remain unconvinced (but open. Really!). I do not know who I will be without the pain, but this has gone on long enough that I am willing to find out.