Christmas Miracles Not Always A Norman Rockwell Painting

A snuck down to look at Christmas gifts under the tree.
A snuck down to look at Christmas gifts under the tree.

It was the Tuesday before Christmas, and we were thrilled.  Our Christmas miracle arrived, and it smelled disgustingly wonderful.  A finally pooped for the first time in 4 days.  As we deal with A’s slow motility, we were thrilled we could plan on spending our first Christmas in our new house.

I know who this is without even looking.
I know who this is without even looking.

 

As I it here on New Years Eve, I am happy to say we will all be able to spend our first New Year’s day in our house as a complete family thanks to A getting out of the hospital this afternoon.  I have to confess to a large amount of concern.  After three days in the hospital, she was discharged with the pronouncement of everything that could be done having been done.  There is still a large part of me that looks at this like a cancer diagnosis.  She has been discharged with a mass inside her likely to grow and inhibit parts of her body’s “normal” functioning more as the mass (of shit) grows inside her.   Her body can’t expel it at the rate it grows within her.  Our hope is a  return to a very broken down formula through her g-tube will allow her body to catch up and turn the tide.

So she is home with us, but her miracle is a family life without food outside of gum not to be swallowed and lollypops.  Our miracle is to be diarrhea every day for at least the next month while her body heals.   Our miracle is the resilience of spirit she shows as she happily submits to treatments (that I fear) because J promised she could earn a pillow pet for each of her siblings by being brave.  The first night of “go lightly” earned one for her, and the subsequent nights she got one for her brother and sister.  What a miracle is the bravery born of love with a nature of giving.

A's favorite gift was a camera.
A’s favorite gift was a camera.

My favorite memories of the 2014 start with taking the family to Jamaica in January.  Going to the FDR in Jamaica was an awesome experience for our family with our wonderful nannies, good food, and a time for J and I to reconnect.

On a personal honors and opportunities front, I was lucky enough this past year to serve on two teams hoping to improve medical care in the US.  The first was with Patients Like Me as they try to better gather information from patients to help patients better track what is happening.  The ultimate goal is to shorten the time between findings in a lab and release of new medical products into the market place.

The second opportunity came when I was invited to serve on the American Board of Internal Medicine as a patient advocate.  I would be hard pressed to express how impressed I am with the members serving on their board and the process they use to create their certification requirements.  I feel like serving on both groups has drastically increased my appreciation for modern medicine and its potential going forward.

All in all it has been a great year even if stressful.  My New Year’s wish is that all of my family and friends live well in 2015,  whether in health or illness.

O is convinced he wants to be a Munchkin.  Don't tell him he has been short all his life and thought of as Munchkin like in his enthusiasm.  Just need him to start singing about yellow brick roads and the image will be complete.
O is convinced he wants to be a Munchkin. Don’t tell him he has been short all his life and thought of as Munchkin like in his enthusiasm. Just need him to start singing about yellow brick roads and the image will be complete.
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Stress and My MS

 

Our tree 2014
Christmas is coming.

Many of us stress about the holiday season. Some of us worry what that stress may do to us. With MS, it is thought stress can precipitate a flare, though all the evidence I have seen for this is anecdotal. It’s simply not ethical to cause stress on a group of people to see if they suffer an exacerbation which may have long term negative health consequences. So as I go through a fairly stressful time period, I started wondering what research is available outside of MS on the impacts of stress, and I came across two theories.

The first theory is based around the idea stressful events have major health impacts. In 1968, two psychiatrists came up with a stress inventory called the Holmes-Rahe Stress Inventory after asking more than 5,000 subjects to track their major life events. They then looked at how the events correlated with major health incidents over the following two years. Using this data, they scored each event and created the Holmes-Rahe Stress Inventory of the top 43. The cumulative score from the events present over the course of a year was used to categorize the risk of future subjects by putting them into one of three categories. http://www.stress.org/holmes-rahe-stress-inventory/

0-150 had little correlation with increased risk.

150-299 indicated a fifty percent chance for a major health incident in the following two years.

300+ represented an eighty percent chance for a major health incident in the following two years.

As I read through the index, my score was between 215 and 272 depending on how strictly I interpreted the categories. So in my effort to minimize my concern, I started looking for reasons this test does not apply to me. I started with the date the list was created, more than 45 years ago. I thought I was in the clear until I found articles indicating it had been studied more recently with updated versions for the changing times. The only new item was death of a pet…which I recently had. This means I score even worse with the update… The biggest draw back on the following study done in 1970 to validate the original findings was the sample was only men, but this does nothing to invalidate its findings for me.

This got me thinking about just what being in the second category meant. It meant I had an increased risk, but how strong is the correlation between the risk category and the health events. It turns out the correlation is only 0.18. So while there is a statistically significant increase in likelihood of health events, it is not quite as dire as the fifty percent in the category would make one believe.
The first approach deals with the impact of stressful events, and I do not score very well on it, but given the low correlation studies have found between events and health, maybe the better prediction can be made looking at day to day living.

It seems there is a general consensus the daily look at stressors is a more accurate way to look at stress and its impact on our body. The best study I have seen described is from Ohio University in 1992, so again dated material is an issue. Still for the sake of understanding, the write-up at http://www.ohioupsychology.com/files/images/holroyd_lab/Holm%20&%20Holroyd%20The%20Daily%20Hassles%20Scale%20Revised%201992.pdf
is excellent. On pages 8 and 9, it lists seven major categories of daily hassles and components within the categories. The major categories are Inner concerns, Financial concerns, Time pressures, Work Hassles, Environmental hassles , Family hassles, and Health hassles. This report looks also looks at the hassles as possibly being just two categories, inner and external, before coming back to the seven mentioned above with all their elements.

As I look at the measures listed for this approach it quickly became apparent, I would do no better on the daily hassles than the stressful events, and I decided I was better served to look at what I can see stress is actually doing to me. After all, I really do not need various scientific studies to tell me I belong in the “stressed” category. I knew this going into the reading. So I am back to noting far more MS symptoms which is right in line with the original theory about stress causing MS flares. However, I do not have the symptoms constantly. As a result, they do not rise to the level of a flare I need to report. Instead, I just note more times when my vision blurs to the snow channel with quick head movements up and down and more incidents of pain and spasticity.

I guess I should just be thankful and employ all the stress relief techniques I know while praying the rest of my family and friends will do likewise.  For now, I will just go back to my inner Karaoke song of choice, good for any season:

 

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Our Family's Stories of Growing Up

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