Enough About Me

It was my beloved Bit who pointed out how self-absorbed my blog can be. So, for now, enough about me.

Abby is so adorable and fun. She is 5 months old now, and she just learned to roll over about a week ago. And she is a little rolling stone, let me tell you. She rolls back and forth and forth and back, wobbling to a stop in each direction like a little Weeble. She also grunts with the exertion of everything -- stuffing Mommy's hair in her mouth, leaning forward to crumple Mommy's shirt or smudge Mommy's glasses, reaching for her new talking caterpillar toy. She sounds like a cable repairman I had once in PG County, who grunted and sighed so much, even just climbing the stairs, that I almost asked him if he wanted me to call the paramedics. Abby smiles all the time, often with her mouth wide open, delight in her crinkled eyes, and when you stumble upon the treasure of a trick that makes her laugh -- oh, Lord! She laughs with a reserved little chuckle, but a huge grin, almost as if she's trying not to laugh but can't help it. Then suddenly it bubbles up and she laughs harder, her little eyes disappearing in her rosy apple cheeks. It kills me. I would do anything to make her laugh.

Right now Abby is very into the caterpillar, very into chewing anything crinkly, grabbing all kinds of different fabric. She loves examining and touching textures and patterns --I'm hoping she'll be into chaos theory, rather than fashion design-- and she likes 'reading' books. She loves other babies, including that mysterious, smiley one in the mirror, and she especially likes little girls, like her sister. The feeling is mutual, there: S sings at Abby, plays with her, gets right in her face and babbles sing-songy at her-- just like I do, actually. Abby adores holding her own bottle, although in her fierce determination to chow down she often pokes herself in the eye with the wet nipple; undeterred, she usually smears formula all over her face before she manages to find the right orifice. And she's ready to eat some food. She chews her toys, her books, her hands, her toes, her clothes, her blankets, her daddy, me . . . . and she grunts with the effort of it. She is adorable, lovable, gorgeous, hilarious. What an amazing blessing. No wonder women let men rule the world -- who can be bothered, when you have these entrancing creatures at home?

For their parts, my other kids are fascinating, too. My boy R loves jokes and tricks, holding his tummy and laughing himself off of chairs when he thinks he's said something funny; he never wants to go to T-ball but seems to enjoy it once he's there; he loves Little Gym classes, he loves learning the names of everything and how each thing works (he sprayed himself in the eyes with sunscreen the other day -- classic), and he loves to help in the kitchen. His face is starting to look older -- less like a baby, more like the older boy he'll be soon. He gets mad if you only read a story and don't stick around to cuddle (which is "laying next to you and talking"). Hmm . . . maybe he gets that from me.

S is a complex girl -- she raids my makeup, loves to dance and plays dress-up any time another girl is around, but she eats with her fingers, burps like a Teamster, and is so klutzy she seems to be trying out for the pratfall olympics. She loves that her dad is coaching her soccer team, loves to draw coupons, menus and pretend money, can be quite rude and ungovernable, but is also sweet and truly funny with a great sense of humor and generosity of spirit. She watches over her little brother almost as often as she antagonizes him; she can be a bit rigid in her sense of fairness and she is heartbroken and furious when unfairness prevails (as it often does when parents are around). She couldn't care less what she looks like as long as you listen to her, and, ideally, do what she says.

My husband is a wonderful character, but he wouldn't want me to write about him here, so I won't.

The Promised More Later

You know one thing that sucks about walking so slowly? Getting rained on.

Anyway, sorry to keep you in suspense. So, the news is that I've spoken to the neurosurgeon, Dr. Witham, since my last substantive posting (which recounted my conversation with the neurologist, Dr. Maragakis). You may not agree with my assessment that it's at least partly good news, but then, what you think is not the most important thing, is it?

Dr. Witham said that after reviewing the MRI and the report, he felt almost as if he and the radiologist were looking at different MRIs. Most importantly, he thinks that the area where my surgery was, C 5-6 and 6-7, is "actually nicely decompressed" and that there is no need for additional surgery there. He agrees that the spinal cord injury remains, but he thinks there is plenty of space there for healing to take place. That's the good news.

He noted that the radiologist hadn't compared this MRI to the last one, so he did that while I was on the phone (they have great technology at Hopkins -- all of your tests are in the computer, so your doc can pull anything up at any terminal). Dr Witham said that levels C3-4 and 4-5 do look worse than they did on the last MRI (which would have been slightly over a year ago, before the surgery), but that right now they are not bad enough to require surgery. That seems like bad news tempered with good news.

He said that I have the worst neck he's ever seen in someone my age.

Still, no surgery now. To make a long conversation short: I might still get somewhat better. I will need surgery again at some point. I can sleep on my stomach (yay!), swim, and do cardio-type exercise, but I should lay off any heavy-duty weight training (like curling a 20-pound baby, probably). I'm supposed to see him and Dr. Maragakis again in August, unless in the meantime I suffer any new numbness, new weakness, or falls, in which case I should let them know and probably see them sooner.

There is some element of good news here, of course. I just feel kinda bad about it today.

I'm quitting the acupuncturist, too. I haven't even had a chance to write about acupuncture and Chinese herbs, but that's part of the problem. The acupuncturist is a 45-minute drive away, the appointments are anywhere from an hour to two hours, twice a week, and she also wants me to take Chinese herbal capsules and smear Chinese herbal pesto smeg all over me which stains my clothes and smells atrocious. It also doesn't seem to help me-- or, at least, it hasn't yet. I think this could be because I have a skeptical attitude. I try not to, and it's really very unlike me, but I can't help it. So I'm going to spend my money on a gym membership so I can do the pool exercises my PT recommends. Ironically, I'm not saving that much money -- my insurance company pays more for acupuncture than they do for mental health care.

I'm tired.

Backing Off

Just want to let you know -- all is not that bad. I'm feeling better, talked to the surgeon and got some good news, etc. More later -- but be not afraid.

All You Ever Wanted to Know About My C-Spine But Were Afraid to Ask

MRI - L-SPINE WO CONTRAST - Mar 11, 2008. There is focus of increased T2 signal in the spinal cord at the C5-6 level. At the C2-3 level, minimal bulge. Thecal sack is 1.1 cm in the AP dimension. The neural foramina and central canal are intact. At the C 3-4 level, there is a right neural foraminal narrowing. Thecal sac is 1 cm in the AP dimension. The left neural foramen and central canal are intact. At the C4-5 level, mild bilateral uncovertebral and right greater than left facet degeneration. Mild bulge. Thecal sac is 1 cm in the AP dimension. The central canal is patent, but bilateral neural foraminal narrowing is seen. At the C5-6 level, large broad posterior disk protrusion asymmetric to the right measuring 3 mm in the AP dimension and 14 mm broad. The thecal sac is narrowed down to 6-7 mm in the AP dimension. There is mild uncovertebral degeneration bilaterally with neural foraminal narrowing. There are foci of increased T2 signal in the spinal cord, possibly representing myelomalacia. At the C 6-7 level, small broad posterior disc protrusion measuring 2 mm in the AP dimension and 14 mm broad. The thecal sac measures 9 mm in AP dimension. The neural foramina are mildly to moderately narrowed and central canal is patent.
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Those are the salient results from my MRI, other than the fact that my thoracic and lumbar spine is fine. Here are some glossary terms to help make sense of the above.

Thecal sac -- thin walled tube that circulates cerebral spinal fluid (CSF).

Neural foramen - an opening between the vertebrae through which nerves leave the spine and extend to other areas of the body.

Central canal - the central canal through which the spinal cord and thecal sac run.

Patent - open, unobstructed.

Uncovertebral - hook-shaped vertebrae (I think).

and, perhaps most importantly,

Myelomalacia - permanent softening or necrosis of the spinal cord.
__________________________________________

I was able to get my neurologist on the phone, and Dr. Cutie got back in my good graces by having the most frank and useful talk with me that we've had since I left the hospital. In a nutshell, it goes something like this:

• there is still a signal change (which means a change in the signal produced by the MRI, indicating a spinal cord injury -- I guess it's easier to tell someone they have a "signal change" than that they have a spinal cord injury) at the same level, C5-6, where I had my surgery. The doctor who reviewed the MRI, at least, thinks it may be permanent (myelomalacia). It is also pretty serious -- note that the thecal sac is 1 cm or more in diameter at other points in my spine, but there it is 3 millimeters. In addition, other parts of my cervical spine, including at C6-7 and elsewhere, there are also some significant problems. In other words, my cervical spine is FUBAR. For this reason, Dr. Maragakis wants Dr. Witham, the neurosurgeon, to review the results and call me as soon as possible. Without coming out and saying so, what he said was that there is a possibility I will need more surgery. Apparently only Dr. Witham can say for sure.
• For once, this scan made Dr. M admit that all of my existing symptoms are probably related to my cervical spine problems (and not some mystery disorder), although he says he still can't explain my double vision (hello, gestation!!) and that he hasn't given up on looking for an alternate cause (I think it was myasthenia gravis in the library with a toaster!). This seems like bad news. If it's not the case that I can't walk because I got pregnant, then the fact that I'm no longer pregnant no longer means that I'll automatically return to walking.
• The thoracic and lumbar spine is fine, which is good news. This means that the uneven recovery of my right and left legs (right staying weak, left getting stronger) is not due to a previously undiscovered problem in my low disks. It is also very unusual for this level of disk degeneration to be so localized -- usually if someone's disks are as bad as mine, they are that way all up and down the spine, not just in the neck. I have a theory about this, which is that all those years of stress and muscle spasms in my neck hastened the falling-apart of that part of my spine, whereas otherwise it might not have flared up until I got a bit older, like Dad. (I almost certainly have a genetic form of degenerative disk disease, since Dad has it and I had such an early onset.)
• There are a great many unknowns here. When I came to Hopkins, as Dr. M put it, my spinal cord was "very strongly squished." Will my spinal cord recover from the existing injury? What further injuries or surgeries await? Apparently there's really no way to predict. He said that arguably, a head or neck trauma could paralyze me, but as I have a desk job he isn't all that worried. Perhaps the man hasn't noticed that I keep falling over. Anyway, as far as preventative measures go, Dr. M says Dr. W will know more about that than he.
• Here's an important point: Dr. Maragakis says there is not always a correlation between the myelopathy (again, another word for spinal cord injury) and functionality. He told me a story about an 80-year-old patient of his who on MRI shows extremely severe myelomalacia in her lumbar spine, but has absolutely no symptoms whatsoever. They aren't even bothering to operate on it, partly because she's so old, but partly because it's not causing her any problems. The relevance to me is this: even if my spinal cord injury never heals, I may still be able to walk better than I do now, eventually. Dr. M said that sometimes spinal cord injuries do heal, and if they don't, sometimes the body can learn to adjust to the new situation, so that things like balance problems, hyperreflexia, and gait spasticity like mine are eventually lessened.
• He said PT and muscle strengthening are going to be very important. This also seems like bad news. At least part of the outcome is up to me. And who trusts me? Certainly not me.

Truth is, it seems like a vicious circle: I need to work hard to rehab, or I may never walk any better, ever again. Yet I haven't been able to rehab well because I have such severe back pain. The back pain is caused by my inability to rehab well. You see where this is going -- nowhere. Ironically, by the way, my back pain is not caused by the problems in my spine -- except maybe to the extent that walking funny means my back muscles are compensating for my weak legs. And no one besides the physical therapists is really concentrating on reducing my back pain.

And ahem, when did it get so hard to get a hold of pain killers!?! I mean, Rush Limbaugh was addicted to them, and I have at least one friend who takes them for fun. How come I can't get any?? How come I have to limp-whimper around the house like a decrepit old lady, prying myself up out of chairs with my flabby-sad arms, calling my husband (or the dog) to pick things up that I've dropped, unable to lift my rapidly growing baby? Maybe if I had painkillers I could at least work on some loosening of those muscles. As it is, D and I are back to the old bunker mentality, trying to figure out how to fit both our jobs and all of our family responsibilities into one life where one "partner" is really only a burden, not a help.

Do you know what I want? I want our home to be a place full of laughter and rest. I want D to come home for the evening, and I want to greet him, looking forward to the fun of being home, the relaxation to be found here. Instead I'm afraid he thinks of coming home as his second job, where only more emotional distress and physical demands await him. It makes me angry, fills me with guilt, and breaks my heart. Thank God Abby is here. She is keeping us sane, giving us moments of joy in every day. No pressure, Baby.

I'm So Tired

Got the MRI results. Not sure what they mean, exactly, but after a lot of internet research that was probably more fruitful than is strictly good for me, it seems like the bottom line is that my neck is a mess and my current difficulties may be permanent. For more on that, and the extent to which that's true, I'm hoping that Vera the Ascerbic, assistant to Dr. Maragakis, is correct when she tells me that he will call me tomorrow. On the other hand, maybe I'd do better to make an appointment with that energy healer.

Clinging

I grew up in a small, midwestern town in Pennsylvania. People there absolutely are bitter, absolutely are sick of both parties and all the administrations under which their jobs disappeared and their towns withered, and they absolutely do cling to religion, to guns, to anti-trade and anti-immigration sentiment to try to comfort themselves with the past and to figure out how to navigate a foggy future. They also aren't sure about black folks. I think the pundits underestimate the ability of these people to see the truth in what Barack Obama said, to avoid being manipulated by those who would try to make them feel angry about it. They won't hold it against him.

Yelling at the Walls

One of the best things in life is when the baby is asleep in my lap -- I probably allow this more often than I should, she should probably sleep in her crib, but I adore it -- and she wakes up for a second, opens her eyes, surprised at first to be outside the womb . . . then she recognizes me, and squinches herself all up with big smiles out of pure happiness and (I imagine) a feeling of safety and contentment. To be able to make another person feel that way surely has to be one of God's greatest gifts.

It also makes me wonder if I ever felt that way in my own parents' arms.

Life is so nuts. How have people been doing this for the past 30 years or so -- since women went to the workplace -- or, rather, how have a certain socioeconomic class of people been doing this since the Industrial Revolution (without washing machines, no less. Of course, to be fair, they didn't wash their clothes, or themselves, very often)? I wept openly the other day (again to be fair, I do that a lot), just feeling completely oppressed by the utter lack of a moment to think, read, do something fun. Fun? Don't remember it. This is an important distinction, though: I have joy, often. As I described above and in many other ways, my sweet family fill me with joy. I am grateful for and happy about all sorts of things, from my Tyler candle to good polling numbers for Barack Obama, from sitting with my hubby on our new loveseat (aha! no more inability to sit together and see the TV at the same time!) to toddling about on our new patio, from taking a moment to blog to giving a successful training at the office (not to mention actually remembering how to find the office). But fun? I think the last time was in the mountains a couple of months ago, and before then -- not sure. There's not much of it, trust me.

Which reminds me: I should probably give you a health update. A couple of weeks ago, I went to an acupuncturist. I want to support and place my trust in Chinese medicine, being the latte liberal, the globally compassionate person I prefer to be, but the truth is I was freaked out. I couldn't feel most of the needles (which were all over my upper back, my lower back, and my feet), and the medicine she smeared all over me didn't smell too bad, but I lay on my stomach on one of those massage tables for nearly an hour, and I kept wondering whether it was safe for my neck to be in that position for so long. I realized then that I have a mental image of my spine that resembles a sleeve of shortbread cookies (Girl Scout Trefoils, in particular), crumbling at the edges, better for dunking in milk than for holding up a complex neuro-musculature. Anyway, I walked out of her office feeling no different (but smelling a bit exotic), but by the time I got home 40 minutes later or so, I felt remarkably different -- no pain in my low back, better gait. However, about 30 minutes later, I had to go pick Abby up from day care and haul that huge infant and her massive, leaden car seat, as well as all her accoutrements back home, and by the time Dave and I sat down to watch John Adams (Paul Giamatti is an amazing actor), my back hurt worse than it had in quite a while. I feel like this kind of disappointment happens to me almost daily.

Speaking of my back, disappointment, recovery and that monster of a car seat, I fell down on Thursday. At day care, there is a very annoying two-step curb that would, I think, be difficult for even a strong and healthy mom to maneuver with a stroller. I need the stroller to get the baby all the way through the playground and all the classrooms to the back of the school where the infant room is, so I had to settle for hiking the wheels up over those two bumps. I finally got tired of doing it, and worried that I was going to muff it, so I started parking farther away from the door and using the handicapped ramp. This meant only one bump on the curb, instead of two (don't old people go to this church? people in wheelchairs?). Whatever. There is also an annoying latch on the playground gate and another on the baby gate inside the school.

On Thursday, however, I got the baby into her stroller (it's one of those stroller-frames that holds the car seat -- you just take the whole car seat out of the car and snap it into the stroller frame) and rolled her partway up the ramp, when I suddenly lost my balance. I think my body just couldn't adjust to the angle, and I keeled over. Unfortunately, I instinctively tried to use the stroller to keep from falling, or maybe I hit it on the way down -- either way, I knocked Abby and her stroller over with me until we were both on our sides on the ground. Thanks be to God, she didn't come loose from the seat and the seat didn't come loose from the frame, so she was just lying there probably no more surprised than she usually is when we bump her around off our legs while carrying her. Until she saw my face -- then, no doubt seeing the horror and upset there, she started yelling. I immediately started fake-smiling and singing to her, and she calmed down immediately while I pulled myself up and righted her, hands shaking and, as it turned out, blood running down my face. I had to roll her back to the car, because my glasses had hit the ground (I think) and had gashed the bridge of my nose. I didn't have any tissues in my new car, so I used one of Abby's burp cloths to stop the bleeding. I was standing there glad that no one saw what happened, and concerned immediately with hiding the fact that I fell from the slightly dim infant-room attendants. Of course, later I was offended when I took Abby in, had a relatively long conversation with the attendants, and bled down my face apparently unnoticed by them. (One wonders not only about my bizarre obsession with what other people think about me but also whether the attendants would notice if my baby girl was bleeding down her face -- but more about that later.)

The next day, Friday, Abby was congested and snorky in the morning again, so I decided to keep her home from day care to try to help her and keep an eye on her low-grade fever (and to make sure she didn't start bleeding down her face, I guess). I spent the day lifting and bending with a grouchy, snotty baby, and then at 4:30 or so, I bent to lift her out of her Pack N Play bassinett where she'd been napping. My low back begged to differ, and I fell to my knees with a cry of pain, once again scaring my poor baby girl. (Like her dad says, more fodder for her book.) From my knees, I was able to lift her to a standing position in her bassinett, and then I sort of levered her up into the changing-pad part of the Pack N Play, which looks like a little helipad on the side of the bin. With tricks born of much practice, I pried myself into an upright position and immediately called D to calmly inform him that I'd thrown my back out again and that perhaps he could keep that in mind when deciding how promptly to remove himself from his meeting and bring himself home.

All weekend, then, we were back to D doing all the lifting and bending -- everything from laying the baby in my lap for a feeding to picking up a potato I dropped on the ground -- and my rising to new heights of whinging and coming up with new emphases on the word "Ow." He had to take Abby to day care today, and will have to pick her up tonight. We're both hoping it'll be better by tomorrow. I sat with my huge ice packs and downed muscle relaxants and Tylenol until my tongue went numb. D and I were both so angry. We both just sort of yelled at the walls, and tried not to offend each other in the meantime. We really love each other so much, but I feel guilty, angry, and afraid, while I think he feels angry, frustrated and afraid, and it just blows at times like this, in all meanings of the word. What drives me crazy is that things like this tend to happen just when I start feeling pretty good. On Wednesday before I fell over, I had started taking the dog out -- granted, just down the street to the communal mailbox and back, but still. Now, this morning, I am back to shuffling like an old lady from my home office to the kitchen as my excruciating back won't let my legs move. When, when will it be over?

I still haven't been able to obtain results from my 3/11 MRI, but my neurologist (you'll remember Dr. Maragakis) sent me his notes from our last visit, which happened before the MRI. He's officially off my list, now, because those notes made clear something he didn't -- although he can't explain what happened to my eyes last year, he seems to have decided that my gait and balance problems, as well as at least some of my muscle weakness, are actually linked to my spinal cord injury (aka "myelopathy") rather than to some other neurological phenomenon. This is bad news, as far as I'm concerned, because now I'm worried it won't get better.

So. I haven't decided whether to go back to the acupuncturist, but I suppose I will (if I can confirm it's covered by insurance). In mid-May, I begin water therapy in the heated pool at my physical therapy place, which is not covered by insurance. Meanwhile, my insurance company is trying to discontinue coverage for some of my therapy (after 5 years) and the disability insurer made "a mistake," such that we have to repay a huge amount of my disability money. Nevertheless, I just signed up to pay premiums for long-term care insurance, because who knows when those cookies in my spine might just dissolve in the milk and I'll need someone other than D to come and care for me in my home. I hope it never has to be Abby.

Lord, I'm getting maudlin now. I'll end on something better -- I love my new church. I'm going to be part of a "commission" planning adult education there. The rector is a bald guy with hip black glasses seemingly as conversant in Zen Buddhism as in the nature of the Resurrection, and although we don't agree on everything, the gang I've met at the monthly reading group is a really good one. Hurrah. Also, being back at work is not the worst thing ever. Speaking of which, I don't have time to explain further why one of my doctors is actually certain that I am getting and will get better, nor to tell you about the "energy healer" he's sending me to, because I really do need to work. But one of the things that makes me happy is writing here, so I decided to do it today. I hope D will forgive me, and I hope you will, too.

FYI

In sleep time, 4+4 does not equal 8. It feels more like 5.5.