Friday, January 29, 2010

Oh No, It Might Rain in San Juan Tomorrow

While I never really look forward to going to get my Baclofen pump refilled, I’m absolutely dreading tomorrow’s trip to Puerto Rico to see my physiatrist. It’s not because I’m worried that the airline will cancel our flight again, or because it’s an incredibly long day with a lot of exhausting transfers to and from my chair (which it is -- I average 26 transfers during every trip).  It’s because the weather forecast says there there’s a chance of rain in San Juan tomorrow evening.

During my last trip to this doctor, I had the worst experience with boarding a plane I've ever had, all because it was raining.

We were waiting to board the flight home.  A taxi to wheelchair transfer a few hours before had gone bad, and recovering from it had wiped me out physically and sent my pain levels soaring. Just as the airline staff member came to escort to the elevator that would take us downstairs for pre-boarding, the skies open up into an unrelenting downpour.

Boarding these island hopper prop jets involves walking/rolling across a couple hundred yards of  tarmac to reach the waiting plane, then climbing the stairs or using an aisle chair and a hand-cranked lift to board the plane, so the airline ground personnel decided to delay boarding in an attempt to wait out the rain. This decision to wait it out made the ground crew -- the only people clothed head to toe in heavy rain gear, by the way -- feel great, but left us "special needs" passengers and our traveling companions grow increasingly antsy to get to our final destination.

Finally, the ground crew reluctantly acknowledge that the rain isn't going to ease up, so it's time to go for it. Even though passengers like me who need to use their hand-cranked lift to get on the plane are usually allowed to board before the able-bodied passengers, for some reason the crew decide that tonight, I’ll be the last one allowed to take my seat.

When it’s finally my turn to head out to the aircraft, the crew member assigned to be our escort hands me an oversized umbrella to hold while another airline employee pushes me. Since I have to hold the umbrella high enough that it won't poke the person pushing me in the eye or obscure her vision, it's pretty much useless in terms of  keeping me dry.  And wouldn't you know it, lightning starts flashing across the sky as we're walking to the ift. I'm thinking, "Great, I'm about to get loaded into an all metal cage and slowly cranked toward the sky in the middle of a thunderstorm. Yeah, this sounds safe."  By the time we traverse the 150 yards between the terminal and the plane, I'm soaking wet and the night‘s being lit up by lightning every 90 seconds or so.

We arrive plane side to find that the aisle chair has been sitting out in pouring rain the whole time the rest of the passengers were boarding, and it is soaked. Since there's no way for the HipHubby and I to do a pivot transfer from my chair to the aisle chair under umbrella cover, we have to do it out in the rain.   I land square in the puddle that's formed on the seat. The whole time we're doing the transfer, we're being told by the our airline escort to hurry up -- not because of the lightning, mind you, but because he's worried about my wheelchair cushion getting wet!

The rushed transfer causes me to land askew in the aisle chair, which was not only uncomfortable, it ended up biting me in the ass -- er, elbow.

As soon as my bottom hit the seat, the crew jump into action to strap me in the narrow aisle chair.  Once I’m secured, the HipHubby scurries up the stairs to prepare to help me transfer while my escort tries to push me forward onto the lift. His aim is bad and the right front wheel of the chair drives off the lift’s access ramp, causing my right knee to bang into the edge of the lift gate. The airline crew member decides that since it's dangerous for us to be exposed to the lightning, he's going to turn me around, tilt the chair back almost 60 degrees, and load me onto the plane backward. As he does, airline employee #2 grabs me and forcefully attempts to tuck my right arm across my body, a position that it will not go into because that shoulder is dislocated. All the while, the airline staff are talking back and forth to each other in Spanish and not listening to anything I'm saying. The rain keeps coming down, and with me laying almost on my back in the aisle chair, I need to keep exhaling hard out of my nose to keep the rain water from entering my nostrils.

Sitting in the cold rain, strapped awkwardly into the hard, narrow aisle chair, it seemed to take forever for them to hand crank the lift up to the level of the plane door. The airline escort finally starts pulling me backwards onto the plane, but my right thigh, knee, and arm are scraped along the metal railings of the lift the whole way because I'm not sitting straight in the aisle chair. Cold and soaked to the skin now becomes cold, soaked to the skin and in pain.

The guy from the ground crew continued to drag me backwards onto the plane, and even tried to start up the aisle that way until he finally decided to listen to what I'd been telling him all along -- that I can't transfer to the seat if I'm facing the rear of the plane. After a lot of finagling between the tight corners at the back of the plane (it loads from the rear), including a lot of smashing my knees and feet into the walls and sharp corners despite theHipHubby's best efforts to protect me, I was finally able to head up the narrow aisle facing the right direction.

We're always seated in the second row from the rear, so it's a very short trip from the rear of the aircraft to my seat. Even so, I notice that I am the main attraction  -- more than a few passengers have turned around in their seats to watch the spectacle unfold. That sense of forced exhibitionism is the main reason I hate being the last person allowed to board.

After the HH helps me transfer to my seat, we notice that there is blood on his hand and shirt, and on the wall of the plane across the aisle from my seat. Turns out that the source of that blood is a gash near my right elbow that's bleeding pretty profusely. Time to update my status to cold, soaked to the skin, in pain, and bleeding.

God bless the flight attendants, who somehow managed to wrangle me a blanket and some first aid supplies while we waited still longer to depart (we had to sit on the tarmac for another half hour
waiting for the inclement weather to clear), despite the airline's efforts to eliminate all amenities as part of their cost cutting measures. Thankfully it was not raining when we landed on St. Croix an hour after we took off from San Juan, and getting off the plane went without a hitch.  American Airlines let me keep the blanket as a consolation prize. Whoop dee doo.

Wish me luck tomorrow.  And a precipitation-free day.

Wednesday, January 27, 2010

Are You Freaking Kidding Me?

I was supposed to go to Puerto Rico today to see my physiatrist and have my Baclofen pump refilled.  The key words in that sentence, of course, are "supposed to".

Our flight from St. Croix was scheduled to leave at 11 am.  Even though our local airport is so tiny that we can park the car, get me in my chair, check-in at the ticket counter, go through customs and security, and sit down at our gate no more than 20 minutes later, the airport staff refuse to issue boarding passes to anyone who doesn't check in at least two hours before their flight.  So we dutifully hauled ourselves out of bed early this morning -- easier for me than the HipHubby because I didn't sleep again last night, got ready (which was riddled with problems and should have tipped us off that this was not going to be the good day we were determined to have), and made it in to the American Airlines check in counter at 9 am.

That's when we overheard the kind-looking older woman behind the counter tell the people who were attempting to check in that our flight was cancelled. The news hit me with all the force of a Category 5 hurricane. 

My first thought was, "How many days before my pump runs out of medication?"  Fortunately, my alarm date isn't until next week, so I wasn't going to be in any physical danger by not getting my refill today.  We considered the option of trying to get on the 1p flight out and the 9pm flight home if the doctor was able to stay late today to see me, but quickly decided that wasn't an option -- I'd never survive trying to extend my travel day from 12 hours to 17 hours would do me in.  So I got right on the phone with the scheduler at my doctor's office, told her what had happened, and asked her when he could see  me.  Being the wonderful (and talented) many he is, my doctor agreed to make a special trip into his office on Saturday to see me, so all we needed to do was get American Airlines to rebook our flights.

The kind, older woman at the ticket counter was surrounded by frantic travelers who needed to make connecting flights today, so we decided we'd call the AA reservations number and see if we could rebook that way.   After a brief scramble to find the number, I rang them up and to my great surprise was talking with a real person in mere minutes.  I explained that our flight was cancelled and asked her to put on on the same flights on Saturday.

Her reply: "What credit card will you be using for the $100 rebooking fee?"

"EXCUSE ME?  Perhaps you didn't hear me -- *you* canceled our flight, making it impossible to see my doctor today.  The doctor can see us on Saturday"

"Well we can only rebook you for free if you travel today.  Other the standard re-booking fee of $100 applies."

"Buy my doctor can't see us today, he can only see us on Saturday.  None of this is our fault, so why should we be penalized $100?"

"Ma'am, that's the policy.  If you extend your stay, you cannot be rebooked for free unless you travel the same day."

"But we're not extending our stay ANYWHERE except home!  We live here -- we're trying to go to Puerto Rico to see my doctor for a scheduled medical procedure and are enable to go because of you!  Why should we be charged for your screw-up?"

"Hold please while I get my supervisor on the line."

Are you freakin' kidding me?

Fortunately we noticed the older lady had rebook all of the people traveling today and was ready and able to help us.  We told her the story, and she immediately redeemed her entire company.  Not only did she reschedule us for the same flights on Saturday, she issued a $100 inconvenience voucher to each of us.  I was so grateful for her kindness after the horrible morning and lack of sleep that I cried.  We asked her for her name so we could call AA and tell them what an outstanding employee she is, but she refused to tell us, saying that what she did was a no-brainer and we should just go home and get some rest.

$100 charge for changing my flight after you canceled the original flight my ass.  The people working the AA Reservations phone lines should be ashamed of themselves.

Saturday, January 23, 2010

I HATE THIS $^q@$!@#$#&*##!@! PAIN

I am exhausted.

This is the second night in a row that I haven't been able to sleep because multiple sources of pain are raging out of control, each aggravating and amplifying the others so badly that they've now formed a chorus that's drowned out 80mg of Oxycontin, 30mg of oxycodone, 12.5 mg of Ambien CR, and a Vicodin ES.

I want nothing more than to close my burning eyes and escape to the land of sleep where these monsters have a harder time reaching me. But escape is too elusive. My back is screaming at the top volume where the T5 disc and vertebra is being crushed as the ten fused vertebrae directly above succumb to gravity's pull and bear down with all their might. The left shoulder and upper arm are a fireworks display of all manner of neuro pain that bursts forth randomly -- broken glass being ground in to the underside of the arm; hot, hair thin needle clusters driven into the cold, stinging, burning of the left arm pit; the large needle probing my left scapula as it tries to suck the marrow from deep within the bone; hot, electrified knitting needles that thrust upward from the bed into the right hip, triggering bursts of current that travel down the hamstring and explode in the knee; the maddening, ever present itch on my upper left arm, a phantom mosquito bite that never goes away and can never be relieved no matter how vigorously it's scratched; the deep, slow burn within my right shoulder, a reminder that the arm is no longer in the socket; and the hot, burning ache of overworked, exhausted biceps and triceps coupled with a badly knotted trapezius muscle caught in a frenzy of myclonic spasms that are going off, every two seconds or so and could last for hours.

I HATE THIS $^q@$!@#$#&*##!@! PAIN.

Thursday, January 14, 2010

Silver Linings and Serendipity (Part 3 of ?)

The five years I spent helping to launch this new cross-disability advocacy organization were amazing and intense -- I learned so much (sometimes as the result of serious mistakes I made); met incredible people who continue to inspire and humble me; benefited from the guidance of several very wise, accomplished women; and truly contributed to improving the quality of life for people with all types of disabilities.

As had already happened so many times in my life, I found myself in the right place at the right time and benefited greatly from it.  My tenure as the executive director of this organization coincided with the heyday of Dr. Jack.  I was chosen to represent my organization and the disability community on the Michigan Commission on Death and Dying, which was created by the state legislature for the purpose of making policy recommendations about the issue of physician-assisted suicide, and co-authored the Commission‘s subcommittee report on procedural safeguards.  (The Procedural Safeguards proposal for decriminalizing assisted suicide received the majority of votes cast, although not a majority vote from the 22 members of the Commission.)  Several years later, I was one of 300 people with disabilities from across the country selected to participate in the National Council on Disabilities Summit on Disability Policy to help develop recommendations on how to change national health care policies to better meet the needs of individuals with disabilities.   My most enduring achievement came as one of the leaders of the coalition that lobbied for the introduction and passage of Michigan’s Wheelchair Lemon Law.

Interestingly enough, the experience during that time that had the greatest influence on my future didn’t take place on the job.  In early 1995, I developed a severe case of pneumonia and was off work for more than a month.  While out sick, I was inspired to log on for the first time to the still relatively new World Wide Web after reading article in “Mother Jones” magazine about the best sites online.  After my first hour of surfing, I was hooked, and I spent the remainder of my recovery time teaching myself HTML and building my first web site (a one page monstrosity loaded with links, graphics, and an appalling amount of annoying, blinking text).  I had no idea at the time just how beneficial this early exposure to this new online world would be.

After five years at the head of this small advocacy organization, the ever present stress from raising enough money to keep the staff paid and the programs running was taking its toll on my mental and physical health.  I missed being directly being involved in program work -- I wanted to get back to creating and implementing advocacy strategies and working on the front lines to get people to take action on the issues that directly affect their lives.  So when a prominent national consumer health care advocacy organization offered me a job working with state groups to improve their advocacy skills and strategies, I seized the opportunity and moved to Washington DC.

Saturday, January 09, 2010

Silver Linings and Serendipity (Part 2 of ?)

One of my mentors at DMB and my roommate were both involved with an organization call The Michigan Citizen’s Lobby, which was an affiliate of Citizen Action. My work with the state student association got me involved with the national student association, which used a grassroots organizing strategy tool developed by -- you guessed it -- Citizen Action. The state student association gave me real practical experience with issue advocacy, and my connection with the folks at Citizen Action showed me that political organizing was a legitimate career choice.

It wasn’t long after that when my daytime role as mild-mannered number cruncher and my alter ego as a political activist clashed -- I took a day off of work to lead and speak at a state student association rally on the steps of the state capitol. When my picture made the newspapers the next day, my boss at DMB told me I needed to decide whether I wanted to work on the inside of the government, or on the outside.

That’s when everything changed. I just couldn’t see myself being happy making a career out of being a public administrator if it meant giving up my right to speak out, to do more than just vote to shape public policy and advance the causes in which I believe. It was at that moment that I didn’t just want to be on the outside, I needed to be on the outside. And with a little help from my mentor, I landed my first paid gig as a full-time activist and grassroots organizer and moved to Pittsburgh, Pennsylvania.

At that first job, I worked mostly on single payer health care and environmental issues. That work, along with the help of another incredible mentor, led to an appointment by the Governor of Pennsylvania to the Coalition of Northeastern Governors’ Source Reduction Council, where I helped develop and promote model legislation to reduce the use of toxic heavy metal in packaging and other environmental issues. But far and away the greatest opportunity afforded me by that job was going through an intensive training by the Midwest Academy’s Steve Max on organizing for social change (also the title of their bestselling organizer's manual).

After a few years in Pittsburgh, I got homesick for Michigan and started looking for a way to move back. Some long-time activists in the disability community there had received funding to launch a cross-disability (physical, mental, and psychiatric) advocacy organization, and flew me up to interview for the job of Executive Director. I was their first choice and was offered the job but turned them down, a decision I quickly came to regret when, only two weeks later, the conditions at my job in Pittsburgh took a huge turn for the worse. I was miserable, and I wondered out loud what the odds were that the person who accepted that job would suddenly drop dead so I could have a second chance at it.

Well, he didn’t drop dead, but he did decide to leave for a higher paying position only six weeks after starting work. Fortunately for me, one of the board members who interviewed me suggested they call me back to see if I’d change my mind. (Already had.) I couldn’t imagine that this could get any better, but it did -- in an attempt to convince that guy to stay on, the board offered him a 25 percent increase in pay and an additional week of paid vacation, and felt it was only fair to offer me the same(!) plus $500 to help defray the cost of my move, further proving that I am one of the luckiest people on earth. So back to Lansing I went.

Friday, January 08, 2010

Silver Linings and Serendipity (Part 1 of ?)

I am a true believer in the old adage that every black cloud has a silver lining.  The bigger the cloud, the bigger the lining.  I made a resolution this year to never lose sight of that.  This is the (somewhat long) story of how the tumor that was supposed to kill me instead led me live a most extraordinary and wonderful life.

In order to get at the spinal cord and remove the tumor, my surgeons first had to remove the backs of the ten vertebrae where the tumor was growing.  (This procedure is called a laminectomy.)  The laminectomies and radiation treatments I had after the first tumor excision weakened my spinal column and caused me to develop a severe (90 degree) front to back curvature of my neck and upper back.  The operation to stabilize the curvature and associated complications caused a four year gap between my junior and senior years of college. 

By the time I went back to school, the cost of tuition was way up and my eligibility for financial aid was way down.  My frustration with and anger about this led me to get involved in student politics at the university level.  I was elected Student Government (SG) Treasurer and during my term in office, I became active in the state student association.  At the end of my term as SG Treasurer, I ran for SG President.  I lost that election, but one week later was elected President of the state student association.

At the same time, the Governor of Michigan launched an Executive Intern Program.  The students chosen would spend ten weeks working directly with one of the members of the Governor’s Cabinet during the day and attending special classes with political leaders at night.  I beat out over 500 other applicants for one of these 22 full-time, paid positions and moved that summer to the state capital, Lansing, to work with the director of Michigan‘s Department of Management and Budget (DMB). 

The internship was an amazing opportunity.  Not only did it provide me with the opportunity to get a first class education is my first love, state politics, being in Lansing full time allowed me to immerse myself in the state student association, the office of which was located just down the street from the Capitol Building.  I really didn’t want my time in Lansing to end.  Luckily for me, it didn’t have to.  A permanent employee at the DMB decided to extended her leave of absence, and my bosses there offered me the chance to stay on.  Since the six credits I could get for the experience would give me enough to finish my degree in Public Administration and graduate, I jumped at the chance and made the move to Lansing permanent.

And then, serendipity. 

Wednesday, January 06, 2010

My Pain is a Ten

Depending on the pain scale you reference, level 10 pain is defined as either “the worst pain you’ve ever felt” or “the worst pain you can imagine.” I think the latter definition is the more valid of the two. After all, if the only pain someone has ever experienced is from a paper cut, then that’s the worst pain they’ve ever felt.

When you hang out on message boards for nurses, people with spinal cord problems, and people with degenerative conditions, you hear a lot of people talking about being in pain, and there’s more than a few who report 10/10 pain all of the time. I’m not one of them, and probably won’t ever be. No matter how severe my current pain gets, no matter how disabling and detrimental it is to my mental, emotional, and physical well-being, it’s not even close to the worst pain I’ve ever felt.

My level ten pain benchmark was set in 1978, when I was 15 years old.

That was the year I had a second surgery to try to remove a malignant tumor in my cervical spinal cord and brain stem. Because the cancer was totally intertwined with the cord, the surgeons had to cut out large tracts of the spinal cord along with the tumor.

After the operation, the damage to and swelling of the remaining cord caused central pain and severe allodynia in my upper left (breast, shoulder, arm, and hand) and lower right (butt cheek, leg, foot and right side of the pubic area) quadrants. Those areas felt as though they were simultaneously burning and freezing, and my skin was so hypersensitive that the slightest touch was torture. A puff of air across my leg felt like I was being flayed open. A tear that rolled off my cheek and landed on my shoulder hurt as bad as if a butcher knife was being plunged into my body. Laying on the bed and being covered by a sheet was gut wrenching, all consuming, unable to think, unable to do anything but sob and scream out loud agony. The massive doses of morphine they injected into me every three hours did little to ease the pain -- all it did was sedate me enough to keep me from losing my mind and begging to die.

Fortunately, the as the swelling in the cord went down, so did the hypersensitivity. I was able to cope with wearing clothes by the time I was released from the hospital several weeks later, and over the course of the next year the burning/freezing pain diminished (although in my left shoulder it was replaced by a host of other forms of neuropathic pain). My right leg no longer has central pain, but it is hyperalgesic. When I experience noxious stimuli in that leg, the pain is far more intense and lasts much longer than other places in my body.

But nothing I’ve experienced since then -- nothing -- has come close to the pain I felt back then. The only time I’ve felt anything close is when I broke my hypersensitive right leg in 2008. Even though the pain of that break left me screaming each time my ankle was moved, I could only rank that pain as 9/10.

I try not to judge people who say they are in 10/10 pain all of the time. They’re clearly experiencing severe pain, and I know how hurting so bad all of the time wears on you. It robs you of your life and it destroys your soul. But my personal belief is that if the pain you’re having doesn’t totally incapacitate you -- if you’re coherent enough to form complete thoughts, if you’re able to communicate with others using actual sentences, if you’re able to sleep each night and get up and go through the motions of life each day -- you can not honestly say, “My pain is a ten.”


Monday, January 04, 2010

It’s the Little Things That Really Hurt

Those of you who’ve followed this blog know that I live with chronic pain. Lucky soul that I am, I’ve got both types of pain: neuropathic (or central), from the damage to my spinal cord by the tumor and surgeries to treat it; and nociceptive, caused primarily by the stress a ten-level spinal fusion puts on the vertebrae immediately below, a severe contracture in my right hip, muscle spasms and spasticity, residual pain from my now healed tib/fib break near my right ankle, and a permanently dislocated right shoulder. (The right shoulder problems occurred during my hiatus -- the story warrants its own entry somewhere down the road.) It doesn’t help that the spinal cord damage (SCD) makes my right leg and foot hyperesthesia, making me extremely sensitive to pain stimuli -- any pain to that leg is stronger and last longer than similar pain in other unaffected parts of my body.

With so many types of severe pain ever present in my life, all of the years that I’ve dealt with it, the myriad ways I’ve developed to cope with it, and the handfuls of medications I take to keep at manageable levels, why does having a stye in my eye or an irritated taste bud on my tongue still hurt so frickin’ bad??

In the grand spectrum of pain, those are little things. Ask anyone, “What’s more painful, having broken glass ground into the underside of your arm (one form of my central pain) or having a stye? A dislocated shoulder or an inflamed taste bud?” and they’re going to pick the broken glass and the dislocation. I’m no different -- I know, without a doubt, that all of the forms of pain I deal with should be far more painful than a little red lump on my eyelid or white bump on my tongue.

Yet these little things HURT. Most times, the discomfort isn’t overwhelming. But now and again, they’ll flare -- sometimes enough to make me tear up and emit a muffled groan. I have both right now, and heaven help me when I forget about the taste bud and run my tongue over my teeth. Don’t even get me started on what it’s like if I happen to blink at the same time.

It makes me crazy trying understand why these little things can cause flashes of agony that can feel worse than more severe than the pains that are always with me.

It makes no sense.

It bugs me.

It gives me a headache.

Which, of course, is just what I need.

Saturday, January 02, 2010

An Open Letter to Care Givers

As some who needs help with some of life’s most basic, and personal, tasks -- like bathing and getting dressed -- I want to thank you for providing me with the assistance I need to get these things done. For most able-bodied people, those are mundane activities, but to me, they would be impossible to accomplish without your help. I can’t tell you how grateful I am that you are here to help me accomplish the things I’d ordinarily do for myself.

That said, we need to talk.

Just because I am no longer able to do these things myself does not mean that I have forfeited the right to decide how they will be done. When it comes to anything that involves my body, I’m in charge. You may be the one who is performing the task, but that doesn’t mean you get to decide how that task is carried out.

It doesn’t matter if you understand why I want or need you to do things a certain way. I have very specific preferences about how things are to be done. My way may not make sense to you, but you know what? I doesn’t have to in order for you to get the job done the way I like it. It’s not important why I want you to open up the wash cloth and hold in in a certain way instead of crumpling it into a ball when you wash my neck -- what’s important is that you do it they way I want.

Yes, I realize that you may have always done it your way, that your way seems easier, and/or that your way may even work just as well as mine. But the fact of the matter is that this isn’t about you. It’s about me -- my health, my safety, my well-being, my comfort, my happiness. I don’t care if you think my requests seem strange, or that you think your way is better. This is not about you.

I realize you’re not a mindless automaton without valuable experience or knowledge of your own. Feel free to suggest other options, but don’t give me attitude if I reject your ideas. You’re also free to ask me questions about why I’m asking you to do things a certain way, but don’t get frustrated or angry if my answers don’t make sense. That kind of negative reaction makes for good sitcom material (the Archie Bunker-Mike Stivik “sock and a sock and a shoe and shoe” bit is one of my favorite television moments ever), but there’s no place for it in real life. I should not be made to feel bad about wanting things done the way I like, nor should I be asked to defend my preferences just because I need help doing them.

When it comes to the type of activities you help me with, there is no right way or wrong way to get them done. So when you assist me with anything I‘d normally do for myself -- whether you’re doing it because it’s your job or as an act of love -- show me the respect I deserve by doing it my way.