This was the week that was ...

... not so good. The trains are rolling again, so to speak, and I’m able to take the Ultram again, thank goodness. I was a day and a half without it, and don’t want to go through that again. For some reason, the pain on my left side, through the hip and down in to my leg, is really, really bad along with some numbness in the leg and the bottom of my foot. Any movement, even with the Ultram and Tylenol, feels like something is being ripped from my spine. Turning over in bed requires a level of effort and finesse similar to parallel parking (and I don’t drive, so there). I actually have calluses on my hands from gripping the newels on the headboard so tightly and so often. Last night, I laid awake from 2:30 until about 4, immobile with pain, worrying about taking too much of the pain medicine and getting blocked up again, or, my worst fear, fucking up my liver with all this stuff. I am obsessive/ compulsively checking my eyes for any trace of yellow every day.

Tyler talked to the NP in Balderston’s office yesterday. It seems that they now have to take all the patients on the waiting list for the surgery that are covered by Workmen’s Comp for some bureaucratic reason or another. So whenever the surgery was going to happen, which we didn’t know to begin with, but I thought I would be first after the
FDA approval and now I’m not, and depending on how many workmen’s comp people there are on the list, this could push my surgery back by, who knows? Weeks? Months? She either didn’t tell Tyler or he’s not telling me because he knows I won’t be able to stand it. Let's hope next week is better.

Et tu, Ultram?

Well, I barely had time to finish singing the praises of my new pain med, Ultram before the honeymoon was over. I haven't had a bowel movement in 5 or 6 days and now my stomach looks like those poor little starving African kids with the big bellies. The skin on my stomach is stretched as tight as a drum, and the pain and discomfort is unimaginable. Sometimes it feels like a mouse is running around in the Habitrail of my intestines, so I think they are working, just not sure what it is they are up to. I haven't eaten anything but a little bit of plain yogurt since yesterday afternoon, it's so full down there that there's no room for anything new. My doctor prescribed Miralax, which sounds like a Miracle Laxative, but isn't. [Sidebar: Sorry to all you folks who are reading this purely for the back and spine issues, believe me, this is part of the territory for most anyone who takes pain medicine for any extended length of time.]So now I've got all this pressure and pain and bloating adding on to the low back, hip and leg pain which has gotten mysteriously worse in the past few days again.

The increased pain may have something to do with the upper body exercises I've been attempting: bicep curls, chest presses, etc., all from the safety and relative stability of my bed; still there may be inadvertent spine movement involved that I'm not even aware of. Whatever the reason, turning over in bed and any kind of movement in general is accompanied by excruciating stabs of pain that feel punitive, though I know they're not.

Also, The Spasms are back for a return engagement, probably because the muscles in my low back and stomach are so stressed from the extra pressure down there. I got stuck at 4AM leaning on the table on the way into the bathroom and had to call for Tyler to help me to get to the toilet. Then, once I'm there, I can't pee (another lovely, new side effect from the Ultram, you really, really have to go, and nothing comes out unless you PUSH, which of course causes pain and strain in the back. Ultram, you really know how to hurt a girl). Once I'm done alternately pushing out pee and crying from the resulting paroxyms of pain, I manage to stand, leaning my hands and upper body on the side of the tub, calling for Tyler to come and help me back to bed. Tony comes too, just to supervise, how cute is that?

So now, thanks to the ungodly constipation, I may not be able to continue to take the blessed Ultram, I may have to add it to the list of drugs that I can not take to relieve my pain, a list that is growing, and frighteningly so.

Little Things

Here’s a list of things that are making me happy right now:

Cleaning up the kitchen.
I can lean on the counter with one hand and wipe the counters, put dishes in the dishwasher (as long I can handle them with one hand and they’re not too heavy, like the Creuset Dutch Oven or the Pyrex baking dish we make roast chicken in). It takes me a long time to do, but I feel such a sense of satisfaction when the dishwasher is rumbling away and the counters are shiny and damp and everything smells like soap and hot water and there are no coffee grounds or pieces of lettuce in the sink trap.

Showers
Medicine, pain and resulting anxiety make me sweat sometimes. Showers feel really good, though they’re kinda scary since my movement is limited and it’s pretty slippery in there.

Sitting outside with Tony

The days that Tony is not at daycare, I can take him outside and sit on the front steps of the building. He sits nicely at my feet, protecting me, and we both get some fresh air and sun. Neighbors stop by to chat and pet Tony, who acts like the mayor of the block, the way he has to greet each and every person that comes by.





NYPD Blue Reruns
Yes, if you’ve talked to me on the phone lately, you know that this is a big part of my life now. Yes, I know it’s not really all shot in New York, but they’ve captured the New York “feel” and they have very brief establishing shots that *are* actually shot here, including some fleeting glimpses of the World Trade Center that make me gasp. Plus I can’t watch more than the first half of Law and Order for the reasons I gave here. It’s a phase, ‘K? After this is all over and I’ve had the surgery, I’ll probably never want to see Dennis Franz again, but for right now, Andy Sipowisz is god.

Swiffer
I can lean on the handle and push it slowly around the floor, picking up the dust and dog hair. Clean is good!

Here's the web site of a Australian spine practice located in Southern Sydney. They've got a really concise background on the ProDisc as well as details about the procedure itself.

The last few days

I've been putting off posting because as I said to a friend in an email, I'm kind of ashamed to continue to "update" when there's no progress. People don't want to read endless descriptions of intractable pain, no matter how well written. (*wink)

When I saw Dr. B nearly two weeks ago, he was concerned about my weight, and sure enough, when I went to see Dr. Mulrooney for the pain medicine last week, I weighed in at a whopping 99 pounds. I've lost about 10-12 pounds on an already slim body. He suggested Boost, but as the first three ingredients are water, corn syrup and sugar, (why do they need both?)I think I'll stick to the whey protein powder from GNC mixed with milk.

Still, I'm not going to gain any "good" weight (read: muscle) without being able to work out. Tyler bought me a small set of hand weights and I've been doing upper body workouts, but I think that may be what has caused the unbelievable/unrelievable pain I've experienced over the last few days. Something about sitting up and trying to keep my balance even while leaning against a chair back and focusing on NOT MOVING MY SPINE must have moved my spine the wrong way; I swear if I could have cut my legs off last night, I would have.

I'm taking the Ultram more often now, but it's messing me up, digestive system-wise, if you get my oh, so slow and bloated drift. And I STILL have to take Tylenol with it to really get any kind of relief from the pain, and not just a vacation from reality, as it were. I don't get it; they can put a man on the moon, (well, maybe) but they can't make something that *takes pain away* and doesn't make me feel like Elvis. Now that would be progress.

Oops I did it again

I guess I overdid it yesterday or Monday cause I'm feeling it; since last night I'm way more stooped over and achy in the backy, hips and legs.

Tyler got me a set of hand weights and I've been doing upper body workouts for my arms, shoulders, chest and upper back. I've been very conscious to try to keep the lumbar spine stable, but it is hard! Now I know I must have moved it the wrong way, cause moving in any way is really hard. The Ultram helps, though I *still* have to take Tylenol with it, and it makes me very agitated once it wears off. WTF? Anyway, I'm only taking one 50mg pill a day, my doctor prescribed two of them four times a day, so hopefully I won't get dependent.

Yesterday was the one week anniversary of my doctor's appointment where he said it would be four to six weeks till final FDA approval of the replacement discs. So one week has gone by, it's now three to five weeks. Yay! Hey, I have to keep myself going somehow.

Went to see my regular doctor on Friday, trying to get something else for the pain, since the oral Demerol doesn’t do ANYTHING. One of the reasons the pain has been such an issue is because I can't take any of the more popular pain relievers like Vicodin or Percacet, they make me really, really sick. If I could tolerate them, I'd probably not be complaining about pain so much. There's also a chance I'd get to like them a bit *too* much, if you get my drift.

Balderston had written me a script for Darvon but since he is not licensed in New York State, I can’t cash it; it’s a controlled substance and here in New York the prescription must be written on a special pad in triplicate. My doctor here gave me Ultram and so far (I’ve only taken two pills, one Friday night and another just now) it hasn’t made me nauseous though it did make my head spin and my mouth dry. It also had the strange effect of giving me some incredible anxiety after it wears off. I looked it up and what I found was a bit scary: it’s used “off label” as an anti-depressant which would explain why it made me so damn jittery. Some people also described “hellish” withdrawl symptoms after a few months of use. I’ve resolved to only take it when I absolutely need it, like at night, when the pain seems to be the worst.

And anyway, to be honest, it doesn't help the pain all that much. What I’ve found is that most so-called pain meds *don’t* eliminate the pain, they just make you not care so much about it. It’s funny, but it seems like I either may be building up a tolerance to the Tylenol or the pain is just getting stronger. When all this first started, I would take the Tylenol and the muscle relaxers and knew it was going to be about 15 minutes till they started to kick in. Now I wait sometimes an hour before I get any relief, and I feel like some of the relief I get is due to my making a point of lying absolutely *still* after I take it. I feel like not moving my spine helps almost as much as the med, but I can’t stay immobile 24/7. I was joking with Dr. Balderston that I wished I had saved my brace from after the fusion surgery. Assuming it still fit me, it would have kept everything in line and stable. I *just* threw it out on our last move from 16th Street into our current apartment, thinking I should finally let go of the past. Ha, ironic, no?

How I got this way

Everyone keeps asking how I got this way. Here’s how.

I was diagnosed with DDD some years ago, and pretty much ignored it, continuing to exercise: yoga, pilates, weights, swimming, cardio. The last three years or so, I began to notice some changes. An hour of shopping or just strolling around would leave me with a dull throbbing ache in my back, hips and thighs. It was like this long-line girdle of pain. Sitting through a movie or Philharmonic concert required near constant shifting and fidgeting, trying to find a nonexistent comfortable position. It was not so much pain as intense discomfort, pressure building up and up like a balloon filling with air, stretched tight, about to pop, yet no matter how I tried to move to relieve it, it stayed taut.

Last summer I’m invited to spend the evening in Bryant Park watching a screening of Jaws. I’m in agony that night; there’s no chairs allowed and no way I can get comfortable on the ground, so I sit, knotted up on the hard ground in a sea of people, unable to stretch out, stand up, or even to excuse myself and leave gracefully. I spend the next day, my birthday, in pain and unable to stand upright.

Then in October, I’m at the dentist’s office. He tells me to sit up and rinse. Doing so, I feel a tug in my back. I’m in pain, shooting down my legs, and unable to stand upright for two weeks. I get better, and I’m walking straight and exercising again, but it scares me and this is when I call Dr. Balderston. Armed with my recent MRI, a CT scan on my neck, a discogram from two years ago and every xray I’ve had from the last 19 years I head to Philly and hope.

Dr. Balderston is sympathetic, optimistic. He suggests a new discogram, hoping, I assume, that the pain is originating from one disc, in which case I’ll be eligible for a single disc replacement. Ten days after the test, in late January, I have a follow up visit. I see the doctor that did the discogram first. He’s arrogant and curt, telling me my only option is to have the rest of my spine fused, “and that’s unfortunate.” Balderston comes in all grim and serious. He says I have four discs moving abnormally and there is a new surgery to replace one or more discs and fuse the other two, but I should wait till the pain is really bad, till the bent-overness and throbbing legs are the norm, then have the surgery. A few years down the road, he says.

I get a bit better, then it all gets worse again. I can’t turn over in bed without holding on to the headboard. I need Tyler to help me sit down on the toilet. One day walking Tony, I collapse on the sidewalk in pain. More than once, Tyler finds me in the bathroom in the middle of the night, on the toilet, contorted and in so much pain I can’t relax enough to start the urine flow and the pain leaving me breathless so I can’t call out to him, can’t say, “Honey? Help me, help me get off the fucking toilet.”

It’s suspected (after some blood tests and an inconclusive MRI) that I may have a disc infection. After a week of IV antibiotics and more tests, I’m released, sent home with prescriptions for Demerol and physical therapy. I make no progress to speak of; the nerve pain goes away, the spasms stay. Then the spasms are gone but the pounding in my legs, hips and back returns. I try to swim, the pain is excruciating.

On our visit on Tuesday, my stomach does a flop when I see my xrays: there’s no space at all between the discs, flat as an iron, bone on bone. This is why I can’t stand up straight, why it feels like my stomach muscles are struggling to keep me from crumpling over and why I’m out of breath all the time from the sheer effort of holding myself partially upright. The first thing I say to him is “you said this would happen in a few years, not weeks.” He nods, reading my file.

We ask him how I got this way. He answers confidently that it is a combination of three factors: bad luck (the scoliosis), genetics and age. He seems equally confident that I’ll be able to have the surgery in the next few months, pending final FDA approval and the ok from the insurance company. At this point, I don’t much think about how I got this way, I’m trying to look forward to never being like this again.

This is how I am now

We drove down to Philadephia on Tuesday to see Dr. Balderston. I felt like such a failure, bent over and begging for drugs, like I had let him and myself down by not getting better. Facing up to the fact that it is not going to get better (at least till surgery); this is how I am now.

This is how I am now: a fact I tried to explain to the physical therapist, as she sat chirping about "my goals for physical therapy" while I lay crumpled on the table, unable to sit up, crying that I wanted to just walk, walk to the bathroom or kitchen without holding on to the sofa, walk my dog, just walk for Christ's sake like a normal person, waiting for her to say she was discharging me because I had failed her, too, by not making "progress."

The pain is constant again, hot screws going into my back and hips, drilling on down my legs. Tylenol helps somewhat, chasing the pain temporarily, but I still have what's known in back-pain circles as "breakthrough pain," crashing waves of pain that appear with no warning, tsunami-like, and are just as devastating. I'm left flattened and without air. Nothing takes those away; I just have to wait for them to go on their own.

Dr. Balderston says the old solution would have been to fuse the rest of my spine. This option would leave me with no mobility in my lumbar region, which at this point is no great loss, I can't move that area anyway. But they've just finished clinical trials on artificial disc replacements which are now in the final stages of FDA approval. When I asked what the next step was, he said to wait for a phone call from him saying that they'd gotten approval, then we would set about seeing if the insurance company would pay for it, then we'd schedule the surgery.

He explained the surgery like this: he'll most likely replace two discs completely, and at least one other disc will be fused. Tyler asked about recovery time; Dr B said it will be much faster than the onerous healing period that I experienced for my first spinal fusion twenty years ago for scoliosis. Then, I was hospitalized for 9 days, (on morphine for all of them, discharged with a woefully inadequate script for Darvon and a really long shoe horn) and in a body cast for 6 months. Apparently the time for recuperation has been reduced to mere weeks, thanks either to medical science or the insurance company's mission to kick everyone out of the hospital as soon as your eyes are open.

For now, the world revolves around my bed. Time is measured by when I took the last dose of Tylenol and when I'm due for the next one. I'm hooked on NYPD Blue reruns, craving glimpses of the city streets I can no longer wander freely while I wait for a phone call giving me notice I'll be cut open, yet again. I'm not complaining, just stating facts; this is how I am now.