Category Archives: Time

divine donut, donut, Patients Like Me, seasonal adjustment, Time, Tomorrow

For All the Tomorrows For Which We Live

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I deny thee for the lie you pretend to be. 

It’s often easy to think we have time. It’s so tempting to say “I can’t wait till tomorrow when I will be able to…” There’s always tomorrow…right up until there isn’t.

These sayings sound trite, so petty. They seem childish once one is confronted with a progressive disease like MS. Even with relapsing remitting MS, I can’t be sure tomorrow will see an easing of symptoms. With every relapse, there is a new, usually worse baseline. Even without a flare, the baseline isn’t level. We all age, and MS ages me faster. Still, I think MS has made me more aware than ever of the good days, even the good hours, minutes and moments. Tomorrow is an illusion whose only real value is contained in all the nows which bring it to exist.

This past week, I was lucky enough to be pointed towards another blogger with MS. Unfortunately, I was pointed to his blog after he passed. He had an amazing way of putting things bluntly with eloquence. My favorite quote came from my favorite of his posts, one on slaying dragons, and it goes right to the heart of making the best of what you can do today.

“Even the healthiest of us have battles throughout the day. We all have our own stories, and as insidious as it may appear to the world, nobody seems to go unscathed. Humor can truly ease the situation. Learn to laugh at yourself a little. I need you all to do me this favor. The next time “running” to the store, “jumping” in to the shower, “grabbing” lunch for the kids, or even “preparing” for the day becomes in anyway a pain in your ass, it is necessary to perform one of two options. Either thank God profusely for the ability and fact you can actually perform and accomplish these tasks without trepidation or consciousness, or take my approach, get your head on straight, make a few jokes, and SLAY YOUR DRAGON! There are no other options.”

(My favorite moments of this week on the next page)

My favorite nows of this week were playing “Go Fish” and Tic Tac Toe with A and watching O concentrate at Tae Kwon Do. To know them is to know how far they each have come to enjoy those simple day to day things. For A, the simple games of logic weren’t easy. To get her to concentrate on winning and not just avoiding losses is a huge change of perspective. She was moving beyond just getting by preferring a tie to a win because then both people are not sad (note, neither being excited for winning either).  This was no small change even though it sounds small.  For O, concentration is not his long suit, and watching him stand in line without goofing off or running headlong into the mirror wall.  With K, I loved watching her run up the sidewalks and down the sidewalks of our block stopping to inspect the plant with colored leaves.  How can a little girl who can see only 2 feet move with such confidence where everything is unknown?  Awe inspiring is the only explanation I have. Progress rarely seemed so rewarding as this week. These moments make all the pain and tiredness seem but trifles.   Live now. 

As my kids grow, I think of the quote from Samuel Johnson, “What we hope ever to do with ease we must learn first to do with diligence.”

Follow up on Seasonality of MS:

I got an email response to my request for data from PatientsLikeMe.com. I had written them asking for access to their data on MS symptoms to look for a seasonal effect using programs I used for work to look for seasonal adjustment factors. Their research department wrote me back saying they had looked for a seasonality of flares and found no significance to the results. Note the “significance” is a reference to statistical significance not a denial of meaning. They also confirmed pharmaceutical companies already use suspected seasonality to make their drug tests look better, and said they thought the idea of looking for a seasonality of symptom reporting could be an interesting research idea. I wrote them back offering to run data through my work’s SAS programs using ARIMA modeling. I’m happy to hear they have looked at seasonality in the past, and if symptoms prove to be better reported than “flares” it will tell other users of data from patients like me which types of data are better reported. The knowledge of how data is self reported is potentially far more useful than even the results of this one idea. The implications could give more value to the results of other studies of self reported symptoms across other medical conditions.

Now after all the talk of disbelief in tomorrow, I must retire.  Today has been packed, and tomorrow will I hope be even more so.

From following morning, the story of the divine donuts:

On the way to work, I was exhausted.  Something about flying 2 days in a row and spending a day giving presentations left my get up and go states away.  So I decided to stop for coffee on the way to work, something I rarely do.  While getting coffee, I saw Crispy Creme donuts and thought they looked too good to pass up.  Since I was splurging anyway, I got a donut too.  Sadly, as I was opening the car door, I dropped the donut with my stupid, clumsy tired MS hands.  I chuckled to myself, “OK God, I can take a hint.  I’m not meant to eat a donut.” 

When I got to work, this is what had been put out for the office to share:

I ate my donut giving many thanks to the lady who brought them and a separate silent thanks mixed with a good laugh…Okay, I ate 2.

  Laughter is good for the soul, even if the inspiring donuts may not be as good for the body. 

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Bitter Pill, family time, foster care, Medical bills, medicare, Single Payer, Time, time off, Universal Healthcare

How Much Does My MS Cost?

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Does anyone understand his or her medical bill?
I read this article, Bitter Pill, and I can honestly say I both understand more and less than I did going into the article when it comes to how much my healthcare costs.  It is an incredibly interesting article for me because in many ways it brings to the forefront issues about which I did not know I was clueless.
I have gone through medical bills, spotted mistakes and even brought them to the attention of my insurance.  At times, this was not in my financial interest as some of the bills mistakenly put me over my deductible for the year.  I have certainly questioned and denied permission to have lab tests both in the hospital and outside asking why I should have tests that will have no impact on my treatment.  Still, the tests are common and acceptance implied unless disputed.  How many people talk coherently to the nurse coming for a blood draw at 3am? 
For what it’s worth in this article documenting much of our crazy charging healthcare system, Biogen mentioned on page 6, also makes the MS drug I take. I have had 73 infusions thus far. The last 15 have come with the benefit of the copay assistance to reduce drastically my costs (props to Biogen). It is still noteworthy to me that I had more than 55 before anyone mentioned the possible help to me.  Of course, my insurance does not care who pays my deductible so why would they mention assistance.
Reading this article, I have rarely seen a better argument for a Universal Payer system. This article is crazy, and it is completely inline with what I have experienced with my MS treatments.  To think, people routinely get on the government for the notorious $100 hammer in the 80’s. That is nothing compared with a $7 alcohol prep pad. Good grief…and this is the efficiency of private industry?
I note single payer does not mean exclusively government run. From the example used in the article, a data center run by Blue Cross Blue Shield gets and processes the claim.  Then they send the result to an auditor (also private) and following that process to a payment center (private).  The system is then backed up by a recovery system allowing private firms to audit past payments for over payments with 80-90% of what is reclaimed going back to the government and 10-20% going to those who found the problem. Government role in Medicare is to set up contracts, set up payment rates, and pay. Single payer need not be the mismanaged mess of a state’s or county’s DMV.

I think we need to get away from the chargemaster system currently in place. Can anyone really claim this is more efficient than Medicare?  I wish I thought this article was out of bounds, but it fits too neatly with my experience. Do people really think Medicare is inefficient compared with chargemaster driven double and triple billing common in many medical bills.  

Amongst all the questions this article raised for me is one for which I still have no glimmer of a solution:
 “If we need to get away from a chargemaster, mysterious billing driven system for all aspects of our healthcare, how do we do so?”  First I think we may need O’s truck to handle the current system.

(More on my MS and fostercare on next page)

On a personal note, every couple of months a nurse calls to follow up on my MS progression and treatments.  I am always asked, “Have you missed any work because of your MS?”  I respond truthfully, usually with a negative.  Still, without missing work, I often end up missing family events. 
Why is this type of question so rarely asked about family and non-work events that are to my mind at least as important?  My answer would often differ.
Second personal note: I find it often feels terrible to make mistakes or to work slower than others may want, but you know what is worse?  Not even being asked to try is a harder sharper blow to my confidence.   Of late, I have found this more frequently invading my consciousness.  When did I become sensitive to this kind of crap instead of just thankfully taking the help?  It is a hard pill to swallow because I know the issue is my own.
My last memory and question for the week revolves around the foster care and adoption system in the U.S.  Why is there so little concern when a young kid has visits with their biological parents for months and still shows no signs of bonding, even to the point of the child throwing temper tantrums when told they will spend time together?  Should other common passive resistance strategies like instantly getting sleepy in an effort to sleep away time spent with biological family be a cause for concern? 
It’s heart breaking to watch a foster kid screaming as (s)he is passed back to a biological mother for the day.   It’s worse when the mother shows no enthusiasm to see her child.  For the love of all that is good, show some emotion at the prospect of time with your child!  They can sense apathy or worse.
I think this weekend represented one of the hardest parts of foster care.  We have only so long to touch lives. At least there are moments like below where we bring what looks like happiness, even if we know the child has been sick and miserable all day.
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