Rain, rain go away

couple of people suggested something that hadn't even occurred to me: the weather might be impacting my pain levels.

As I recently posted, I've a had 3 or so weeks of feeling pretty damn good considering what had come before. Granted, I've been on the nerve calming medicine all along, but still, I was sleeping and functioning and not thinking about pain 90% of my waking hours.

But then, on Tuesday, that lovely trend came to a crashing halt. I woke up to pain and it got worse over the course of the day until I was a quivering mess by nighttime -- even with narcotics and heaping helpings of ibuprofen. Some of my melt down was undoubtedly triggered by the baggage the last 9 months of pain has left in me -- I wasn't just feeling the pain of the moment, I was feeling the energy- and spirit-zapping effects of months of pain. And hopeless, yes, I was feeling hopeless.

A cyst in my spine just doesn't seem like the kind of thing that would respond to changes in weather, but this latest turn did coincide with the rain rolling in... And it is pouring today, and I do feel rotten. So, I will track the weather along with the pain, because what else is there to do?

On the medical front, I have another appointment with a surgeon who is giving me a second opinion. It was quite a tortured path to get my medical records to him, but they are there and I'll see him next week. I also ran an all too familiar routine yesterday, calling the pharmacy, the doctor's office, the insurance company, and then the doctor's office again. I walked the office manager of my doctor's office through all the ways her staff had fucked this up. I think that prompted her to get involved and get the right form filled out. She tried to cover and blame the insurance company but I had names and dates to contradict the story she had been fed by employees covering their asses. We shall see.... I *might* be able to start new drugs tomorrow (4 1/2 weeks after they were prescribed!) but it will take 1-2 weeks to tell if they are going to make any difference. Whatever. There doesn't seem to be much I can do to change this ride.

A bit confused

I can't explain why, but since Saturday, my pain levels have dropped. In four days, I've only taken two doses of pain meds. I have no explanation for this. I have not changed my other medications. I have had no procedures. I have not changed anything about my usual routine -- other than to stop reaching for narcotics at bedtime and ibuprofen upon waking.

I'm certainly not complaining, but I'm at even more of a loss to figure out what to do next. I'd love to get off the mind-slowing nerve calming meds, but what if they keep me at this very-livable pain level? Meanwhile, I'm still waiting to hear back from the second surgeon who is reviewing my case. I'm also waiting for a new medication. Waiting, waiting, waiting...

Persistent Cystic Mass

I'm still waiting for my surgeon to call me back to discuss the MRI I had on Tuesday. In the meantime, through indirect channels, I acquired a copy of the report from the radiologists. Not surprisingly, it is written in doctor-ese and there is much there I don't understand but the "impression" noted at the end seems clear enough: there is a cystic mass at the site where I had a cystic mass removed in January and it is "probably minimally smaller" than what showed up on the MRIs I had in December. December -- as in BEFORE I had surgery to remove said mass. I'm particularly confused, because what is there now is about the same size as what was there 6 weeks ago (or 5 weeks post surgery).

Did the surgeon miss most of it? Did it grow back quickly to almost its previous size and stop? Is there something else entirely going on? I don't know. And while I am interested to hear what my surgeon has to say, I'm looking elsewhere for ideas and treatments.

It is time, I've decided to seek a second opinion from neurosurgeons outside the U of M system. I'm also going to get a referral to the pain clinic. The latter feels like a bit of defeat, since much of their treatment seems to be about finding ways for individuals to live with chronic pain apand I haven't not yet resigned myself to living with chronic pain. But, at least according to their definition, I'm already there:

What is Chronic Pain?
Chronic pain is often defined as pain that persists for more than 3 months or that outlasts the usual healing process. Persistent pain can also result from chronic diseases such as arthritis, cancer, musculoskeletal or neurological disorders. Chronic pain affects all aspects of a person's life including daily activities, family life, work, leisure time, sleep patterns, and mood.

What if I said no?

The doctor asked me five and a half weeks ago if I could live with the pain. I couldn't really wrap my brain around the question then. Part of that was denial. The pain was not supposed to be there. He was supposed to tell me that it was just inflammation from the surgery. He was absolutely not supposed to tell me the cyst I'd had removed from my spine five weeks earlier was growing back.

So when he asked the question, "Can you live with this pain?" I couldn't stop flashing on how bad the pain had been before surgery to assess where the pain was in that particular moment. And I couldn't think about saying "no" -- because what would no mean? Would no mean that I would kill myself over the pain?

Weeks later, the pain has gotten worse. The last week has seen the return of the searing sensation in my lower leg. It has been waking me up. And the pattern is the same. I awaken and there is a peaceful moment -- when I'm aware of being awake, but I'm enjoying the pleasure of my bed, but as soon as I move, the pain builds and I have to get up -- usually whimpering while I do it. It's not that I can't live with a couple of shortened nights of sleep (I have two kids -- I've done it), but now I'm playing the doctor's question through the lens of my daily life.... Can I live with never sleeping more than 4 hours at a stretch? That is where I was for more than a month before my surgery. Can I live with not being able to sit through an entire meeting? Can I live with cutting my students short and shooing them out the door so I can stop trying to hide my hurt?

When the pain first appeared, I tried so hard to ignore it. The first time, during a meeting, that I had to stand to relieve the leg pain, I felt such defeat. I could see the downward slope ahead of me.

I'm no longer standing at the top of that slope. And it is worse because I know where this is going. I was here so recently. And I know that I can't parent, I can't grade or write, I can't concentrate when I have to hold my body so carefully and so intentionally all the time.

Right now, I am achingly tired, but I can't go to bed. It is too early. I'll be up at three, even with narcotics (but the narcotics will help me get to 3am quite nicely). In moments like these, I can almost see myself saying "no" to the doctor. No, I can't live with this. But that leaves me in a place that might be scarier than the pain.

Sitting Down

For the first time in probably a month, maybe two, I am typing at my computer while sitting down. The surgery on Jan 6 was long and involved -- some bone in my spine was shave back (L4), a cyst was drained, and then all of that cystic tumor that could be removed without doing damage to my nerve was scraped away. My incision hurts. A 3-4 inch line down my spine, sealed shut with a couple dozen staples is hurting right now, but the searing, burning pain that had taken permanent root in my lower right leg is completely gone and while my right big toe is still a bit numb, I know it is there. As the swelling goes down, it should get better. I can lay on my right side. I am not leaping out of bed in pain shooting from my right hip down to the tip of my toe.

Now I must be patient and give my body weeks to heal. The narcotic haze helps the incision pain but also makes my fingers and my tongue stumble, but I'm so relieved -- almost scary relieved -- that the surgery seems to have worked. The pain was beyond what I had endured with the hip and I don't really have the words to describe the terror it brought to me as it got worse and got worse so quickly.

But now, now I can actually contemplate adventures to come. A trip to the desert. A trip to Hawaii. Sleeping 7 hours in a row.

radio silence

It has been a long time since I've had anything to say on here, it seems. I think that is mainly because all I have wanted to say to internet-land for the last couple of weeks is, "OUCH!" What began with a strange pain/weakness in my right hip the morning I hopped out of bed to fly to California in mid-October has become a constant, painful companion of late. I recognize the patterns from chronic pain of the past... I'm struggling to focus, to do what I need to do, to get out of the house. I'm terrified that if I stop moving now, I'll stop moving for good.

Some progress with the doctors reveals that it is some damage happening to my L5 nerve root happening in my lower back that is sending the shooting pain and painful numbness down my right leg. My lower leg burns. Even my toes tingle painfully with numbness. Not surprisingly, I've maxed out on ibuprofen so that I can function a bit but by the time evening rolls around, I'm more often than not crawling off to bed whimpering. But then at some ugly hour (usually beginning with a 4 - or 5 if I am really lucky) I'm up, howling in pain. Really, I've found myself howling. I was actually screaming in my car the other day while stuck at a light on a 5 minute drive: the pain had flared up, I had to get out of the car, but I was stuck.

I've got some better drugs, but I'm not taking them now (4:40am) because it is my morning to drive the carpool for middle school. And then there are meetings. And a sizable stack of term papers that must be graded. I will, however, take the prednisone I started yesterday. Yesterday was a better day than I've had in a while, so maybe there is some hope but then the system is doing a crappy job of finding me a specialist to see and a place for physical therapy. There is much more waiting ahead of me. I call the doctor and wait. The nurse calls me back, but only half my questions are answered. So she goes back to the doctor and I wait. Then the referral is not clear, so the clerk has to find the doctor and I will wait some more.

In the meantime, I'm feeling somewhat paralyzed by my partial diagnosis (we now the nerve group but won't know how it is being impinged until I get the MRI next week). In the meantime, should I go to the gym? It feels okay when I am there, crappy after, then (after a nap) I generally feel better for the rest of the day. I have felt myself getting weaker, especially in the last two weeks, sometimes I'm shuffling when walking.... This terrifies me. Maybe the gym makes me feel better because I let myself think I am fighting the decline and confirms that I can still move. But what if I'm making it worse?

Ouch

Okay, this is it for a while. My right arm -- that would be my mousing arm and the one attached to my yuiopghjklbnm fingers -- is hurting. I've got internet elbow and carpal-tunnel-graded-too-many-papers-itis. Since there are still more papers to be graded and it pains me more than the joints and tendons to not write comments on them, I've got to scale back the 'puter time. I've give my Scrabble games to E (watch out!) and set my Facebook status to something that begs to not be changed for two more days...

I do have a copy of Dragon Naturally Speaking 8 laying around. I may try to get that up and running... and then I can dictate comments for my students and yammer out all the blog posts running around in my brain. Then I can save more precious right arm for other amusing pursuits :)

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.