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Optimistic for a Game Change

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I find myself stuck between hope and optimism. My need for either comes from a sense things can not continue indefinitely along my current path. Pain grows and periods of blindness increase in frequency. I know much of this is a by product of stress. Thankfully, I have some reasons for optimism and hope. When one can not win a game, and the playing of it gives only negative results, perhaps it is time to change the game. In my case, the potential changes give hope for short term betterment and optimism for long term changes.

For me, the difference in the two terms, hope and optimism, lays in one’s expectations. Optimism implies an expectation of a positive outcome or set of outcomes. Hope is the ability to conceive of and imagine a good outcome after we have set aside all of our expectations for good or ill.

Hope remains independent of our logic. At times, it may be buttressed by our optimism and logical expectations. Yet at other times, it may be the last defense standing alone in the path of the hurricane of our existence which seems to blow away all that upon which we have built our lives.

Some days, we must all hide behind our hope, taking shelter until the sun shines once more so that we may begin to build anew.

Hope for the short term:

MS certainly creates stress as my body shuts down at work and home. At work, I manage a team whose membership has changed suddenly. I have all new staff, and I have to hope they are as good and competent as they seem because our schedule remains unchanged. I have to hope I can move on from this job after I set it up to continue. I need to change this game because my ability to enjoy the process has left with the staff I picked and trained.

At home, I hope my oldest daughter learns to accept her limited diet and finds a way to thrive emotionally. Last week, she accused us of trying to kill her by not letting her eat (by mouth). I can only hope because right now, in the midst of it, I can not see a way out. Yet we will continue on as best we can, hoping for peace.

Optimism for the long term:

There was an article in Nature last week showing for the first time how the brain is connected to our immune system. It mapped out the blood brain barrier. While this is not in itself a cure for MS or Alzheimers, it does put the brain back in play as a normal vascular system where blockages can be seen and predicted. CCSVI was a procedure started by a vascular surgeon in Italy who believed his wife’s MS was a vascular problem. He put a stent in her brain to improve blood flow. Since then, thousands of MS patients have had the same procedure, despite not knowing if it solved a real problem in our brains. For some it helped, and other it did not. Studies seemed to show MS patients were no more likely to have a blockage than a healthy person. Now, with this study, we may better be able to look at the brain’s blood flow and understand the system. Suddenly, we may have changed the brain from a complex system to merely a complicated one. A procedure like CCSVI may be better targeted.
http://medicalxpress.com/news/2015-06-link-brain-immune.html

This discovery has the potential to be a game changer for our understanding of how the brain works.

On the home front, our game change is in name only. This week, we adopted K who has been with us for years. It may be in name only, but the feel good news comes at a most welcome time.

Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.
Our family officially grows to match what we have known and and lived for years. We are now officially a nuclear family of 5.

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appreciate the good life, chronic conditions, defining success, family picture, introspection, life well lived, life with MS, MS, MS cognitive function, MS medication, MS symptom progression, MS symptoms, Multiple Sclerosis, running, Uncategorized

Ten and Forty

This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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