Physical Therapy yet again

I'm back for yet another round of Physical Therapy. Those of you who know me know that I am not crazy for PT for a variety of reasons.

So I had my first appointment last Tuesday. The therapist was nice enough, but not nearly as aggressive as I'd like her to be with the massage. I hadn't been to acupuncture for a few weeks and I was needing those knots to be worked out; her gentle massage just didn't cut it for me. Then, and this is really weird, she gave me the heat pack at the end of the session (don't they usually do that at the beginning, to warm the muscles up to work them?)and to top it all off, she put this huge heat pack under my shoulder so I was laying on top of it and all uneven. It really threw me out of whack and I hate myself for not opening my mouth sooner but she was with another patient and I didn't want to be a noodge. I had sciatica all the way home, I think from being all out of whack and not laying flat. I'm telling her not to do that again when I have my next appointment tomorrow.

Had another follow up with Dr. Bartoli. She (and her med student) did a nerve function test on me and, thank goodness, all is fine with my nerves. She thinks the numbness and "funny bone" feeling in my fingers is from the muscles in my shoulder and thoracic region not pulling their share of the weight so to speak and putting pressure on the nerves that affect those parts. I also got a few blessed trigger point injections, which never fail to please.

People say the dumbest things ...

Is it just that I’m now a crotchety disabled person, or are people really this stupid? I’ve been told that I have a great attitude (just again the other night, so, there!) and I generally keep a smile on my face, but it’s hard enough with everything I’m going through then to have to deal with comments/questions like the ones that follow, and yes, these are actual things that have been said to me. I've written out my imagined responses for your reading pleasure and also as a warning. If you see me, please oh, please DON'T say any of these things to me, or at least don't expect me to smile at while you say them.


A neighbor, upon seeing me shuffling along with my cane: "Oh, is your back really that bad?"
Me: “Oh, good gracious, no! You know how it is, I really like to walk around with the cane, it slows me down so delightfully, I think I’ll never be without it again!”
Alternate response: “Sshh! I’m faking it for the sympathy! Now get the door for me before I nail you in the shins with this thing!”


A neighbor, upon seeing me shuffling along with my cane: "Are you still waiting for surgery?"
Me: “Actually, I’ve had myself taken off the list for surgery; I’m finding walking around in pain and exhaustion incredibly uplifting. Do try it, it’s better than yoga!”

A neighbor, upon seeing me shuffling along with my cane: "How’s your back?"
Me: “How’s it look, asshole?”

A neighbor, upon seeing me shuffling along with my cane:"Have you tried yoga/a chiropractor/acupuncture/swimming/stretching/physical therapy?"
Me: “Have you tried being a sentient being? Dear GOD, can you see that I can’t hold up my upper body on my own? Why don’t you figure out how much your upper body weighs and then carry that weight around in a backpack on your back and see how able you are to do yoga/swimming/stretching, etc. And don’t get me started on physical therapy. I’ve made more progress on my own than I did with the PT harassing me about ‘making progress’ with her cookie cutter ‘back strengthening’ program that was causing more damage than good.”

A neighbor, upon seeing me shuffling along with my cane: "Glad to see you are improving!"*
Me: "What are you comparing it with that *this* looks better than anything? I mean sure, at least I’m up out of bed, but I’m walking like an old crone with a bag of sticks on her back, all bent and slow. Even though the pain is better, the walking gets worse by the week. WTF?"
*Special note for blog readers, don’t come here and just skim the entries and then make a thoughtless comment like the one above. It's just insulting is what it is, and it really pisses me off.


Wanna know what TO say? Compliment my cane, my attitude, my smile, my hair; things like that are a LOT easier to smile through.

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.

Abdominal Incision 11 weeks

This week's installment of the Neosporin Scar Solution Challenge.
It's not looking much different than last week. I'm also a bit concerned about the formation of scar tissue. I'm trying to massage the area gently, but it is still quite sore and I can feel the thick scar tissue that's formed underneath. I don't want it to adhere to any layer of muscle in there, cause then it will look ugly and lumpy and there goes my goal of a six pack by summer.

I see Balderston on Friday and let's hope he gives me the go ahead for more activities (like bending!), and maybe some physical therapy to break up the scar tissue.

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.