Category Archives: MS symptoms

MS, MS symptoms, Multiple Sclerosis, pain

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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mistake, MS, MS cognitive function, MS progression, MS research, MS symptoms, Multiple Sclerosis, Uncategorized

How We Measure Success: Beware Dangers of Metrics Posing as Reality

This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more...if I believe it to be accurate.
This do it all scale can tell me my weight, height, body fat percentage, total weight of my fat, and more…if I believe it to be accurate.

In our hustle and bustle world, it seems there is an increasing pressure to do not just “better” but to do “optimally.” We want to know we could have done no more and be no better than we are. This desire can lead us down many false paths as we attempt to quantify “better” and “best.” How do we measure success?

At 9:48 on April 13, I stepped onto the new scale, height and body fat analyzer at work outside our little convenience store. Then after my lunch run, I decided to see if there was an impact from my run. Since there was no line, I stepped right up. One forty-five minute run resulted in my losing 6.4 lb. of fat! It was such a miracle run, I even gained 0.4 inches in height. The machine even gave me a receipt to prove it!

This machine is a very convenient way to track some basic health stats. However, there is no way I burned 6.4 lb. of fat in a 45 minute run. What this test shows is our need to question the results and measurement error before drawing conclusions. The simplicity of the two measurements claiming to measure the same things seems like a great test, but if results like mine were real, I would be a biggest loser coach on a team that never loses. Alas, life is rarely that simple.

Do not think this is simply about my fat percentage as read by a scale. We make these measurement errors all the time in our desire to have measurable, quantifiable results. With multiple sclerosis, drugs have been approved for more than a decade based on their ability to reduce the number of new lesions seen on MRI’s of patients’ brains. It’s an easy, if expensive, measure which gives researchers a nice quantifiable measurement from which they can claim “drug X is an improvement.” However, the question remains as to whether the lesion test is a good test for the reality of the patients’ multiple sclerosis progression. I and many other MS researchers have come to believe the overall brain volume/shrinkage is probably a better measure of MS damage, but that measurement isn’t enough on its own either to define the damage.

At some point, like after my run, a look in the mirror and noting which belt notch I use is probably the better bet to determine the impact of my run, even if the measurement is less precise than the super scale pretends to be. Similarly, I would never take the results of an MRI showing lesions as the best sole measure of my MS. Some days I will feel awful and tired with new symptoms, and the test results might or might not show why. Neither result changes my reality for all my attempts to quantify the impact of my MS today.

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