Monday, November 26, 2007

Can’t Sleep, Can’t Breathe (Or More Tales of Body Betrayal)

Forgive my bluntness, but I feel like crap right now. I’m going through yet another period in which various bodily functions are going haywire, and my attempts to correct its bad behaviors have been almost entirely unsuccessful. And it’s getting old.

Most frustrating, and the malfunction that’s causing the most hardship, are the problems I’m having getting any restful sleep. Just about the time I started needing a wheelchair, I became what can best be described as a bi-polar sleeper: I would survive on only a few hours of sleep a day for weeks at a time, and then crash and sleep almost uninterrupted for days. I managed to make this work for me, though, and it didn’t seem to cause me any problems as long as I didn’t try to force my body into doing the opposite of what it was inclined to do.

Right now, I would sell my furry little children to get a few solid hours of sleep at night. It’s been weeks since I’ve been able to sleep through the night. This has happened before, but now I’m also unable to sleep during the day either. Nodding off isn’t the problem -- I feel like I’m doing that all the time, including once in the middle of writing this -- I just can’t stay asleep. If I’m lucky, I’ll manage to doze for up to 30 minutes before I jerk myself awake again. It doesn’t help that I’m having pain flares at the worst moments (e.g. right as I start to relax and drift off). And it just annoys me to no end that taking the pain meds, in doses large enough to drop a small pony, doesn’t do a thing anymore to promote drowsiness.

I’m starting to feel like a sleep deprivation experiment. I’m so exhausted that I’m woozy -- I’ve got that swimmy-brain feeling more often than not, and I actually get nauseous
from it sometimes. And my nerves are shredded (as my long-suffering hubby will attest), which I’m pretty sure is contributing to the muscle knots I’ve been battling in my left leg and calf (not exactly helpful when it comes to getting restful sleep in their own right). The really sad part is that the emergency medication I take when my legs get that bad, which is usually so powerful that taking even 1/20th of a tablet (1 mg) typically knocks me out cold for 24 hours, isn’t doing a thing to help me get some rest. *Sigh.*

Adding to my discomfort is the hard time I’m having breathing. Even though two different forms of lung disease had reduced my lung function by half, I’ve learned to adjust pretty well. In fact, when I’m doing well I don’t notice any breathing problems at all -- I can even swim 1000 meters without ending up gasping for air. But lately it’s felt like I’m wearing an iron cummerbund that’s two sizes to small -- and that’s at rest. Moving about, even doing as little as transferring into my wheelchair, leaves me huffing and puffing like the Big Bad Wolf taking on the brick house, and my rescue inhaler isn’t bringing me any relief. (I’ve been scoffing every time an asthma medicine commercial comes on that includes the claim that you shouldn’t need to use a rescue inhaler more than twice a week -- lately, I’ve been using it twice a day before lunch!)

It can get pretty scary laying in the dark and realizing that you’re gulping for air and wheezing. It’s even more frightening to have no idea if the problems are from an infection, or if the syrinx in your brainstem has started putting pressure on the nerve bundle that regulates breathing. And no matter how much you hurt, it makes you wonder if not being able to sleep might be a good thing, though, because those mega-doses of pain meds you rely on have the nasty tendency to suppress respiration. (So does Ambien and other sleep aids, which is why I’m not rushing to the pharmacy to fill one of my prescriptions.) Not exactly a good thing at any time, but it’s the last thing I need when it’s already hard to draw a satisfying breath.
So as much as I don’t want to, I’m going to give in and go to the doctor -- a general practitioner, to be precise. A new GP, since the one I had been seeing, who had finally learned all of my peculiarities (like even at my best, my lower lobe in my left lung sounds like Rice Crispies freshly doused with milk) just retired. I had hoped to be able to do what has become my standard procedure for new doctors -- making and paying for an appointment that has no purpose other than handing off records and getting to know one another without illness complicating the new relationship. But it seems that luxury has past. At least I can finally get my mammogram done if she orders a chest xray.

Wish me luck, that this is my last sleepless night, that my lung problems need nothing more than a hearty round of Cipro, and that my new doctor (a woman) will realize that no one knows my body better than me and do what my best doctors have always done: combine my instincts with their expertise.

With all of the complications that my friends and family have been through with me, I know I’m not the only one who’ll be breathing a little easier when this latest body betrayal is over.

Friday, November 23, 2007

‘Tis the Season to be Pissy

Well, here we go. It’s the official kickoff of the “holiday” season (even though our local Kmart has had their Christmas stuff out since mid-October). And I want no part of it.

I detest the holidays, and do not celebrate Christmas at all. I don’t decorate, don’t buy gifts for friends or family, don’t send cards, don’t partake of a big meal. Christmas day is, in our house, absolutely indistinguishable from any other regular day, except that we know we don’t need to- go -pick up our mail.

My grinchiness comes from both the past and the present.

My Mom was a huge Christmas person. She decorated the house, shopped year round to find the perfect gifts for everyone, did the card thing, and always prepared a big holiday dinner. She even hand-made all of the ornaments for her Christmas tree, hundreds of hand sewn, stuffed, and sequined works of art lovingly made.

But while this made for the perfect holiday environment, our family dynamic when I was growing up was not so perfect. Mom and Dad frequently got into spats during which they wouldn’t talk at all, and would barely interact. But regardless of how bad they were getting along come December, we were always expected to play along with the Christmas rules: buy and wrap presents for each other, and play happy on Christmas Day, even if no one had said a word to each other for week prior to that. I hated it, and I resented being forced to sit and smile for pictures, and worse, to suffer through the agony of watching the two of them open gifts from the others and try to appear civil and grateful for the thought and effort put into each package. If I dared to express my true feeling, I was called Scrooge and berated for not playing along.

As I got older, I began to understand the excesses that went along with Christmas, both in my home and throughout society. I always knew I was blessed, and I felt grateful every day for being born into the comfortable life I had inherited. But my feelings of gratitude became feelings of guilt and anger when, despite my objections, people bought me things I neither needed nor wanted, simply because a calendar told them it was time to give me a present. (I’ve never been a fan of giving gifts only because it’s a particular day -- gifts should be given because the giver wants to, not because she is expected to, honor and/or surprise the recipient.) My disgust for this holiday has grown as the commercialism and excess associated with it have increased.

As an adult, there’s only one Christmas tradition in which I enjoy taking part -- being a Secret Santa for a child or family who has true need. The city where we last lived had a wonderful program that we participated in each year. Volunteers were able to tailor the amount of their gift by designating, in generic terms, what type of recipient they wished to shop for (individual child or adult, family with a specific number of children, senior). We loved the program because it provided a very specific list of your adopted “giftee’s” needs, including sizes, and gave us the option of either delivering the gifts in person or being an anonymous Santa by letting the program staff bring the gifts to the participants. It broke my heart to see children whose dream was for Santa to bring them socks or a winter coat, or an elderly woman who just wanted a thick blanket so you could be warm while she slept. Because we didn’t buy gifts for anyone else, we always had the funds to go above and beyond the basics they needed and buy toys, gift certificates for the movie theaters, and other items that would bring them a bit of fun. I’ve never had as much fun, or felt as good about Christmas, as I did when we were making purchases for our adopted family.

Providing others who have nothing, and expect nothing, with both some of the essentials they need to survive and some luxuries they never thought were within their reach seems to me to be the real embodiment of a core Christian value. In my not-so-humble opinion, a whole lot of holier-than-thou Christians would do a lot better in the eyes of their god by celebrating the Christmas holiday by giving selflessly to others, with no expectation of reciprocity or even acknowledgment, instead of buying even more crap for people who are already overindulged with the latest techie toys, hottest designer clothes, and flashy jewelry.

Merry Pissiness.

Thursday, November 22, 2007

Choosing Between Pain or My Brain

From all outward appearances, this blog ought to be jam packed with entries -- at least one a day, if not more. After all, I like to write, have never been lacking for something to say, seem smart enough to put thoughts together, and don’t have one of those pesky job thingies that tends to eat up so much of most people’s time.

And yet, only 30-some entries in six months. Just. Plain. Sad.

The reason is that really great drugs ate my brain. But not in the George Carlin, psychedelic-era, “Doesn’t my hand look weird? Ooh, say hand out loud, doesn’t that sound funny?” kind of drugs. (I wish.) Sadly, these drugs are the harder to get, by prescription only, cost you a fortune, give you a life if you need them but steal your life if you don‘t prescription drugs. Taken is pretty large doses, every day.

Now I’ve taken drugs that screw my brain before. Back in 1991, I started taking an antispasmodic medication called baclofen. This drug is terrific at calming down misbehaving muscles, but taken orally it can knock you out. Fortunately, your brain gets used to it being in your body and you soon don’t notice it at all in terms of awareness and mental agility. At my peak dosage, when in Las Vegas at a work-related conference, I was so immune to the mental slow-down baclofen causes that I was able to wash down my dose of baclofen and a Darvocet with half of a James Tea Kirk (basically a clear glass bucket of blue Long Island Iced Teas with gummy worms in the bottom that’s served at Quark’s Bar on the Promenade at the Las Vegas Hilton). Not only was I conscious after this risky little adventure, I managed to leave the bar and make well-received contributions at two conference breakout sessions and then win several hundred dollars by hitting a royal flush on a nickel draw poker machine. (Responsible adult and CMA note: This was a really stupid thing to do -- the mixing drugs and alcohol thing, not the winning money at draw poker thing. No one should try it, especially those fond of breathing and thinking.)

When it came time to go off of oral baclofen (it eventually became ineffective on my muscles, so I traded up to Intrathecal Baclofen Therapy - IBT), I was told by my doctors that even though I didn’t think my brain was foggy, I would be shocked at how much more clear my thinking became. This scared the behoosis out of my husband, who sometimes had a bit of a time keeping up with my hyper thoughts when I was under the influence. And they were right -- I did pick up some mental acuity that had been lost to the baclofen. After I started IBT, I got to take my brain for a run for the first time in 10 years. It felt good. It was something I could get used to.

It was something that was all too short-lived.

A few months after the transition to IBT, my chronic pain began to get worse -- a lot worse, and fast. Over a vew short period of time, I went from happily existing on the occasional Darvocet to taking Oxycontin and Oxycodone, the big dogs in the pain management park. And these big dogs started eating my brain.

At those early doses, it wasn’t too bad -- certainly no worse than I was on a bad day when I was on the baclofen. But now that it’s necessary for me to take pretty high doses of these narcotics just to stay comfortable, I‘m paying a high price for that comfort -- and I’m not just talking about the criminally high prices charged by the pharmaceutical companies. I used to be able to manage three or four tasks at once, then I could only do two, and now one, if I take a lot of distraction breaks. I was never able to just sit and watch TV or a movie in the days before the Oxy drugs became a way of live-- I had to do something else like play a game or write or do some crafty-type project so I didn’t get bored. Now, it’s necessary for me to give certain fast-paced shows my full attention, or else I turn into that annoying person who keeps talking over the action to ask who said what or did what to whom. But my biggest loss, the one that I grieve for most, is my ability to read for long periods of time. But with the opioid-soaked brain, I’m lucky to be able to focus long enough to get through a chapter now and then instead of knocking off a novel every couple of days.

Now don’t be mislead by my pissing and moaning…I’ve not been reduced to a glassy-eyed simpleton who now considers the funny pages challenging reading. By all accounts, I’m still better off brain-wise on drugs than some folks are at their best. But when you’ve spent your life knowing that your body is probably going to self-destruct, you get pretty darn attached to keeping yourself mentally fit. So it’s been difficult to accept that my choices are to be in pain (which plays its own form of hell with being able to think) or to be somewhat comfortable but a lot foggier than your used to. Still, when it gets down to brass tacks, it’s a no-brainer. Literally.

So while I miss being a walkie, I miss my brain more. And that means that my secret hope for a short-term medical miracle isn’t a cure for paralysis, it’s that they develop a drug that will kill the pain, without killing your brain along with it. And I bet I’m not alone.

Monday, November 19, 2007

Alone Again, Until...

An ex of mine had a philosophy on life that seemed rather morbid when he first put it forward, but as I’ve grown older, it’s made a lot more sense: “No expectations, no disappointments.” Given the events of the last few weeks and the spectrum of emotions they‘ve elicited (particularly where I‘ve ended up), I’m wishing that I’d done a bit more to embrace that perspective.

It started with a response to a blog entry I received from one of my most cherished friends, in which he mistook my willingness to accept my circumstances as courage when they are, in fact, pure cowardice. It seems that I didn’t really like admitting that I was nothing more than a big ‘fraidy cat, because after three plus years of being committed to a reality in which there is no surgeon out there who could help me (if I were to somehow change my mind about being cut open again), I started researching the wonderful world of neurosurgery.

After a few days of digging, I happened across a web site dealing with syringomyelia, a condition I have, that also talked about spinal cord tethering. I started reading some stories about the miraculous results that people were having thanks to the doctors at the Chiari Institute, and it happened: I started to feel a flicker of hope.

But even more than hope, I started to feel less alone. In my now 30 plus years of living with an anaplastic astrocytoma, I’ve only ever met one other person who shared my diagnosis and lived for as long as I have. Just that diagnosis alone made me feel like an orphan in the world, feelings that only intensified as I survived more life-threatening experiences and was diagnosed with other rare diseases. No matter where I looked, I couldn’t find anyone who could come close to relating to the realities of my life…until I found this web site. To my astonishment, the first reply to my introductory post is a woman who has survived many of the tribulations I’ve had, and my hope that I had found people whom I could commiserate, who would truly understand how frustrating it is to live as an anomaly, soared.

Then I started really reading the site in its entirety, and all of those hopes were dashed. In my elation, I failed to grasp that the talk of de-tethering on this site referred to (in the most basic of terms) the releasing the lower end of the spinal cord to the bottom of the spinal column, which has no relation at all to the surgery needed to release my cord. When that was brought to my attention, the spark of hope that the Chiari Institute could offer me any relief, or even better odds for coming out of a detethering/duraplasty procedure better off than I went in was snuffed out.

And the more personal stories I read, the more I felt that while we all have at least one degenerative spinal cord disease, the people with the specific diseases covered on the web site were, for the most part, very different from me. Some are just much earlier in the course of their disease than I am…many have just been diagnosed. Most just don’t appear to have symptoms as severe as mine. This is not meant to dismiss the pain and suffering those good people must endure, it’s just a conclusion made on quantifiable evidence including number and dosage of medications needed to function part of the time. I just can’t see someone who only needs to take a small dose of a muscle relaxer to get relief from spasms to understand how it feels to have plasticity so severe that I have a pump implanted to deliver medication directly to my central nervous system, take the maximum daily dosage of another oral anti-spasmodic drug, and still don’t get more than 60 percent relief from the tension, twitching, and knots.
The emotional crash that occurs when what seems to be a long-sought and much needed oasis is discovered to be nothing more than a mirage has always hit me hard, but for some reason this particular experience knocked me down harder and is on track to keep me down for longer than other times I’ve been through this. I suspect it’s because I went into this search under a shadow of fear that this is exactly what would happen. It’s not in my nature to re-open decisions I’ve made, and it’s definitely not my typical M.O. to ignore nagging red flags, yet that’s exactly what occurred.

Despite the lingering effects of those crushing emotional blows, I was able to confirm with a sky-high degree of certainty that my only options are having a horribly risky surgery, and that there isn’t a neurosurgeon out there who has any experience with anatomy as fucked up as mine. Again, this statement is not meant to belittle the very serious problems faced by others. It’s just a matter of fact that there are astronomically poor odds of finding someone else has:

  • had 90 percent of their cervical spinal cord removed,
  • a 90+ degree kyphosis,
  • a 35 degree scoliosis,
  • a brain stem syrinx,
  • tethering of the remaining cervical cord to the dura,
  • posterior and anterior spinal fusions from C2-T4,
  • had 6000 rads of radiation to the cervical and thoracic spinal cord, and
  • who had to have their left trapzius muscle removed and used to cover a previous spinal incision when a leak of cerebral spinal fluid couldn’t be repaired through more traditional means.

On good days, I look at all I’ve been through and am astonished at what a miracle it is that I am alive and can do so much. On bad days, I see all that and all I feel is lonely...

...until, seconds before posting this entry, that same dear friend mentioned earlier replies to the pouty, "oh poor me" email sent minutes before I put these thoughts to paper, and from over 2000 miles away makes me feel special and loved and embarrassed, and far from alone.

Everyone should be so lucky to have such a wonderful person in their life.