Wednesday, February 24, 2010

Please Release Me, Let Me Go

No, this isn’t a tribute to the old Eddy Arnold/Jim Reeves song that I can still sing by heart after hearing my Mom play it over and over when I was growing up.  This is a plea to the invisible python that’s coiled itself around my midsection and is slowly, but persistently, crushing my organs and making my already difficult struggle to breathe all but impossible.

The name of the reptilian constrictor is the MS Hug.  Despite its name, this evil beast doesn’t limit its prey to people with multiple sclerosis -- it can strike anyone with spinal cord damage.  It attacks without warning by constricting the band of muscles near the bottom of the rib cage and hanging on, sometimes for days and even weeks at a time.  It’s strong and relentless, and so far undeterred by the numerous attempts I’ve made to rid myself of its painful presence and prevent it from ever hunting me down again.

I’d already had some breathing problems earlier today -- after laying on my side for an hour to try and get some sleep, my lungs filled with gunk, making me rattle and wheeze with each breath -- so the arrival of this evil python was even less welcome than usual.  The Hug attacked right after I sat up, making it seem as though it had been patiently laying in wait for me, ready to strike as soon as its target was exposed.  In a matter of minutes, it was tightly coiled around my body and giving no indication that it had any intention of releasing me from its death grip any time soon.

My ability to comfort ably breathe isn’t the only casualty of a Hug attack.  By causing my abdominal and back muscles to become rigid, this monster also impedes my ability to move myself around.  It’s not as though I have the greatest range of motion in my torso on my best days -- my spinal column is fused solid from the base of my skull down to the middle of my chest, which means I can’t bend or flex my upper body above my waist at all.  It looks and feels like I’m wearing a neck brace and body cast.  The Hug makes me feel as though there’s an actual snake wrapped around me, its thick body physically impairing me from bending at the waist.  Even someone with full strength in and control f their arms and legs would be hard-pressed to move about if they couldn’t bend or twist their torso, so you can imagine how difficult it becomes for someone like me who has almost no use of her legs and extremely limited strength in her arms.

I’ve tried just about everything I can think of to force this tenacious predator to release me from its grip, but nothing has brought me any relief.   It’s unfazed by heat and cold, immune to drugs, and unaffected by physical intervention.  It’s as strong-willed and single-minded as I am, and only it will determine the moment when it’s had enough and is ready to move on to its next victim.

Until then, I wait, my breathing shallow and my body stiff, waiting for the morning when I wake to find that this insidious beast has finally let me go and returned control of my body and breath to me as quickly and unexpectedly as it stole them away.

Post Script:  I swear I wrote an entry about the MS Hug in the earlier days of this blog.  But even though I can see it clear as day in my head -- there was a picture on the Michelin Man in it near the bottom of the page on the right -- I can’t locate the post here on the blog or anywhere in my original documents.  If anyone else remembers that essay, please leave a comment and let me know that I haven’t totally lost my mind.

Sunday, February 21, 2010

The Fuss Over Family Guy

I just saw yet another rant against Seth McFarland and his show Family Guy.  Parents of so-called “special needs kids” (more on why I hate that term later), including ex-Governor of Alaska and expert hand-writer Sarah Palin, are up in arms about McFarland’s portrayal of a teenage girl with Down Syndrome, calling him a “hater” for “picking on people who can’t defend themselves.”

I just don‘t get their outrage, and find many of the arguments being put forth by the McFarland bashers hypocritical at best and highly offensive at worst.

At the center of the controversy is a scene in which Chris, the oldest son in the cartoon’s Griffin family, is out on a date with a teenage girl with Down Syndrome.  She admonishes Chris for being rude to her, citing as an example that he hasn’t asked her a single personal question all evening.  Chris responds by asking her what her parents to, to which she replies that her Dad is an accountant and her mother is the ex-Governor of Alaska.

The Foes of Family Guy (FFGs) have decided that one line of dialogue is a “kick in the gut” to Sarah Palin because it somehow mocks her son Trig, who has Down Syndrome. 

To quote Chris Griffin, “WHHHHAAAAAAAUH??”

I’ve watched the whole episode -- which is more than I can say for some of the FFG spokespeople out there.  Frankly, despite the usual irreverence shown toward everyone and everything, I thought the portrayal of the girl with Down Syndrome was extremely progressive and positive, especially in the context of a show known for taking political incorrectness to new extremes.

If these FFGs would put away their pitchforks, burning torches, and angry hounds long enough to take an objective look at the character and only the character, maybe they could look past the irreverent satire and see what I saw:  a self-confident teenage girl who attends the same high school as her non-disabled peers, and goes out on a date with a teenage boy who is absolutely smitten with her and finds her beautiful.  I should be so lucky to be mocked like that.

Come on, folks, let it go.  It’s a cartoon that takes shots at EVERYONE, including my crowd -- paraplegics and quadriplegics.  In his cartoon, Seth McFarland did what I’ve heard people with developmental disabilities ask for all along -- he treated them same as he treats everybody else, by using  stereotypes and misconceptions as the basis for satire.  If you don’t like that kind of humor, don’t watch it.  But for goodness sake, please stop acting as if the show and Seth McFarland have single-handedly set the public perception of people with developmental disabilities back a hundred years.

And while I’m on my rant, I HATE the term “special needs kids.”  The needs kids with Down Syndrome have aren’t special at all.  They have the same needs as everyone else -- an education that helps them grow and develop to their maximum potential; the opportunity to get a job, play sports, eat out at restaurants and go shopping; friends and family who love them; access to quality health care; and the right to live as full participants in their communities.  IMO, continuing to refer to people with developmental disabilities as people with “special” needs further segregates them, and does far more to stigmatize them than any 30 minute cartoon show ever could.

Tuesday, February 16, 2010


*Fucked Up February.

It's been a pretty shitty month so far.  My body is not cooperating at all with the many, many plans my brain has made (like finishing the many blog entries I've started and answering my email backlog), and I'm pretty discouraged by the whole bloody affair.

At the core of it all is exhaustion.  My prescription insurance plan made my never-ending battle to get adequate rest all the more difficult by deciding that it will no longer cover Ambien CR, the only thing that's enabled me to get even a few hours of sleep each night.  At $550 a month, there's no way I can afford to pay for it out of pocket, so I've been forced to use regular Ambien instead.  It's been a disaster.   Last night, I took 10 mg of regular Ambien at bedtime.  I was quite sleepy before taking it, so I was very hopeful that a good night's sleep would finally be mine.  I slept for just under 30 minutes.  Several hours later, still wide awake, I took two Advil PMs, and got another whopping 30 minutes of sleep.  If I'm lucky, I'll be able to lay down and catch a couple hour nap in the afternoon, but three hours of sleep  day isn't nearly enough to be functional or to keep my pain levels in check.  The exhaustion hits me in rogue waves, knocking me down, disorienting me, and sucking me down into momentary unconsciousness multiple times every day.  

After being remarkably stable for the last few years, my pain situation is getting worse, too, and it scares me.  There's several new forms of severe central pain that have been making regular appearances on the areas of my body that were the most affected by neuropathic pain after my second tumor surgery -- my upper left arm, shoulder, and arm pit, and right hip, thigh, and butt cheek.  These pains started out as intermittent, but are now constant and are not responding to the pain meds I take.  The worst is the raw, burning pain in my arm pit.  I confused it at first with a severe reaction to a clinical strength antiperspirant, but there's no irritation present and the pain gets much worse when anything touches that area.  I'm fearful that these are going to get worse, possibly even progressing to the level of severity I experienced after that second surgery -- what's now my benchmark for level 10 pain.  

As if all this wasn't enough to fuck me up enough to keep me from doing the things I want to do, my lungs have gone to hell for the first time since coming to the USVI.  I'm severely short of breath, my lungs are tight, and even though they sound clear, I'm still having frequent bouts of rattling, wheezing, and bringing up a lot of green gunk (without a fever or any other signs of being sick).  Getting air became so hard that I was hitting my rescue inhaler five or six times a day at two puff per, which is not only a poor management strategy, it can be downright dangerous.  It doesn't help that I'm also dealing with more frequent occurrences of the MS Hug, a spasm of the band of abdominal muscles at the bottom of the rib cage that makes you feel as though an anaconda is wrapped around your midsection and squeezing the life out of you.  After being off of it for the last few years, I've started using the strongest formulation of Advair again in the hope that I'll be able to breathe more easily without being permanently attached to an inhaler or a nebulizer.  I was a little relieved to know that I'm not the only one having breathing problems as of late.  My pharmacist was sold out of Advair when we went to fill the prescription -- he'd sold a month's supply in less than a week. 

Something's gotta give, and soon.  I can't keep going like this.

Wednesday, February 03, 2010

Even Two Bitchy Flight Attendants Didn't Ruin a Perfect Trip

It was bright and sunny in Puerto Rico on Saturday.  In fact, the only dark clouds that crossed my path during my visit to my physiatrist wore American Airlines flight attendant uniforms.

This trip made up for all of the problems we had during my last two visits to my physiatrist, and then some.  Great weather, no long waits anywhere, and we were in and out of the doctor’s office so fast (I was his only patient that day) that we were able to get back to the airport in time to catch an earlier flight back home!  Making that flight cut two hours of waiting time off of our trip and got us home before dark  You can‘t beat that with a stick.

Everything would have been perfect had we not been forced to deal with two obnoxious flight attendants -- one working the flight to PR, and the other deadheading our flight home.

Bitchy Flight Attendant Number One (BFA1, for brevity) was no stranger to me -- she worked a flight I took six months ago, and earned her moniker then.  On that trip, she and I engaged in a battle of wills over where I would sit -- she was adamant that airline policy dictated I sit in the window seat (so my gimpy body doesn't keep my able-bodied husband from accessing the aisle and saving himself in the event of an emergency).  I knew that was not policy, and I refused to move from my aisle seat (partly in principle, but mostly because it's not physically possible for me to drag myself in and out of window seats).  I stayed put, and she's been pissed about it ever since -- she hasn't even made eye contact with me since she stormed off down the aisle when it was clear she'd lost the battle. 

BFA1 recognized me as soon as I boarded the flight last Saturday, but continued to ignore me -- until it was time for me to get off the plane.

The aisle chair escort in San Juan was the evil opposite of the woman who helped me board the flight.  He didn't speak with me -- he talked to my husband instead.  He didn’t listen to my protests that I wasn't seated properly before starting to strap me into the chair.  And he didn’t respect my personal space -- he kept grabbing my arms and trying to force them where he wanted them to go, even if it was physically impossible for me to move that way.  BFA1 sat a few rows up, watching intently, as if my use of the aisle chair was the latest movie release and she was Roger Ebert on a deadline.

I was getting frustrated, fast, with my aisle chair escort and it showed -- those who know me well that I don’t suffer fools, gladly or otherwise.  After my fourth attempt to make him understand he was not to force my elbows against my body, I decided that since he wasn’t listening to me when I used my normal tone of voice, I’d make sure my escort heard me.  So I raised my voice, and stated unequivocally that he needed to stop grabbing at my arm *now*.

And that’s when BFA1 said it, under her breath, yet as clear as could be.  “What a bitch.”

I let it pass.  Her crappy attitude was not going to ruin my good day.  The HipHubby wasn’t as quick to let it go -- he wanted me to report her immediately.  (I didn‘t, and don‘t intend to.)  Given how upset he was over her inappropriate comment, I really admire his restraint when he encountered Bitchy Flight Attendant - The Sequel (BFA-TS) later that afternoon.

By the time we were ready to board the flight home, our moods were positively buoyant.  We’d been taken off stand-by and guaranteed seats for the earlier flight -- the only issue now was where those seats would be.  The gate agent listened to my explanation of why I needed to sit in the second row from the rear, but refused to reassign anyone, so we decided to do what we always do in these situations -- take the seats that work best for me when we preboard, then tell the passengers assigned to those seats to take our assigned seats instead.

There was only one tiny, little flaw in this plan.  The person assigned to my preferred seat was BFA-TS, and she was already settled in to it by the time The Hubby got on board to help me transfer when I made it onto the plane a few minutes later.

Although I didn’t know about this until we arrived back in St. Croix, it seems The HH had quite the encounter with BFA-TS.  After getting past the shock of seeing someone already sitting where I needed to be, my DH asked BFA-TS if she would please move a few rows up so his disabled wife could sit here.  She said no.  The HH explained that sitting in this row would allow me to avoid the long, painful trip up and down the aisle on the poorly-driven people dolly.  She continued to refuse, and no argument or appeal to her compassion would sway her.  After all. she already had already taken out her papers.  So I wedged my way into the very back row, and my DH wedged himself in next to me, and BFA-TS and her paper sat all alone, directly in front of us, where she could hear every whimper and word that left my lips.

I got a good laugh out of it when we landed and my DH filled me in on how self-centered BFA-TS had been.  I had mentioned to The HH several times during that flight home that this was a perfect day except for that bitch of a flight attendant, and I know BFA-TS heard it all.  Even though we both knew I was talking about BFA1, I’m really hopeful she thought I was talking about her.