Thursday, July 15, 2010

Carnival of MS Bloggers #67

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Professionals, Patients, and the Lottery

by Judy of Peace Be With You

all over the world
committed professionals
looking for a cure

in a leap of faith,
though unsure of benefits,
patients take their shots

uncharted pathways
we explore together
hoping for the best

by Dr. Rob at Musings of a Distractible Mind

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Dr. Rob

[Although not an MS blogger, I thought that Dr. Rob's post was extremely important and applicable for many of us in the MS community.  If you haven't discovered Dr. Rob's blog, I highly recommend it.]

by Judy of Peace Be With You

Let us be honest.
None of us would have chosen
to contract MS.

To be practical,
what is the point in asking
why this thing happened?

The pressing question,
how to deal with what we have
in the here and now.

by The Wheelchair Kamikaze
Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.

This concludes the 67th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 29, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 27, 2010.

Thank you.

Comments for this post.


  1. Thanks for putting that up. It was actually an MS patient who was put off by a bad ER experience that made me write this post. I told her that she scared doctors, and since I had been her doc for 12 years, she didn't take it personally.

  2. Continuity and the long-term relationship are so very important when a patient has one or more chronic illnesses. I am thankful to be fortunate to have put together a great team, who actually communicate with each other, to help guide my care.

    Primary, neuro, rheumy, one ER dept (if ever needed). Keep things simple when the possibilities are complicated.

    I did have my own ER visit a few weeks ago. It was between Rituximab infusions and I had only one concern...the possibility of a blood infection which would prevent my getting the 2nd infusion.

    My primary symptom was extreme pain upon touch (the space of which was expanding) on my forearm (tiny bit of heat, no redness). This was not the arm which received the 1st infusion, but is an arm which has been perpetually numb for years now. I had also tripped and bruised myself up pretty significantly in the week previous.

    The ER doc was thorough. Blood tests and blood cultures done - fine. Look for blood clot - fine. Look for possible hairline fracture - nope.

    I offered that it could 'possibly' be the sensation of nerves coming back to life. They way the pain was spreading away from my spine made sense for this explanation. Something to talk to my neuro about during our next visit.

    Fortunately, I got my 2nd Rituxan infusion on schedule. But now (6 weeks later) I am still showing some phlembitis on the vein which got infused. Sigh.

    Nothing is easy. I appreciate so much what doctors do. I respect the ones who admit to the "I don't knows" but who do not shy away from the long-term, complicated cases. We need more of you!!

    Thank you, Dr. Rob, for writing this fantastic post!!

  3. Lisa, I am always flattered when you include my poems in your Carnival of MS Bloggers, but this time I am simply blown away by whose company my poems keep. Dr. Rob's post is a an eye opener and well worth rereading often. As for Marc on Wheelchair Kamikaze, I keep telling him he is brilliant, though by now he may be tired of hearing it from me. The thing is, he is brilliant. This post and the one "When You Are Afraid ..." are my favorites of his.
    Thank you, Lisa, for the amazing service you provide us. We MSers are deeply in your debt.

  4. Hi Lisa,
    what a delight to see "Why Me," by WK. I think that post turned me around while I was reeling about my husband leaving.

    Well, starting to reel,
    I don't expect to snap out of anything anymore (ha ha, MS). And Wheelchair wasn't talking about lovelorn sob-sisters, but his rationale of life's idea of "fair," helped me clear my head quite a bit.

    Not to mention, whoTF knows if I would ever be able to find the original post again on my own?