Category Archives: Multiple Sclerosis

We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”

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Life Is Not a Box of Chocolates. It’s Crummy

Believe it or not, I had red hair.
Believe it or not, I had red hair.
I know the Forest Gump quote says, “Life is like a box of chocolates,” but lately it seems more crummy. Some days, the crumbs are like the left over crumbs from a great coffee cake. I don’t want to waste the sensation of tasting even one morsel. So I push them all together in an effort to get just one more taste. Other days are more like the annoying crumbs of play-do left after our kids use it, fold it, cut it, shape it, and ultimately leave lit bits to either dry up into sharp bits that stab up through my socks or worse mush into the fabric of the socks. Yuck.

Sadly, this last week has been decidedly more of play-do crummy. I’ve had more pain more often of late. With more pain comes more mistakes and difficulty thinking. For a while, the pain has been in my hands, but of late just getting up from a seated or laying down position comes at a risk of sharp back pain like being stabbed with a spear straight through to the gut. I still have no idea what prompted that pain or caused it, but thankfully it is less common this week. Now I am back to primarily joint pain in my wrists and hands to pair with head aches. I can deal with these.

After all, I’m a red head, or I was before my hair lost its color. I did find it interesting to read how red heads feel pain differently than everyone else. Maybe if I did not have MS, I would be more reactive to pain from cold, but other than that this article echoes my experience. red head pain

As I got over the sharp stabby crumbs, I managed to stumble into the gross mushy crumbs. While everyone else in the family got sick last week with a nasty stomach virus that lasts for 2-3 days, I managed to avoid it. I attributed my luck to my MS. My immune system attacking everything with a tactical nuke has its advantages, and I am rarely out of work. I just didn’t realize my immune system was yet to be tested. As everyone else got better on Monday, it struck me Tuesday morning. It was the first time I have ever needed a puke bucket while sitting on the toilet. Yuck! Those crumbs were gross and they were on far more than just my socks (have I mentioned I love my wife lately?)! The good news is my body’s tactical nukes got me past the yucks in less than 10 hours. The next day I was at work…8 lbs lighter.

Having experienced both types of negative play do crumbs, I have to say bring on the coffee cake. These things do come in three’s right?

Scratch that.

I’ve had enough crumbs.

I want to scream for some good old ice cream!

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