I always try to be positive when I am talking about the MS. After all, what good is it going to do to be "Debbie Downer," constantly talk about how bad things are and do nothing to make it better. The end result--which is my goal--is people see "Jodi" and not "poor Jodi, she has MS." I freely admit some days that is easier than others. Some days my wife gets to deal with all of the bad because I don't show it to the rest of the world. And some days my friends know it is a bad day but they also know that I might need some love, support, and a hug, but I will push through it.
I have learned some things this year about the MS and how it is affecting me after twelve years. First thing I have learned is there might not be a reasonable answer and there is always a contradiction. The"peripheral neuropathy" that I have been having--the increased tingling and numbness in my feet, hands, and sometimes lower lip--may not have an answer right now. I have had a full neurological work up. Exam, MRI, EMG (damn, THAT HURT). The exam showed a problem. I can't feel things--vibration, cold, sharp, direction of movement--in my extremities. My feet and hands don't feel it. But, the MRI showed no new lesions. The EMG was normal. My doctor had said it may end up being an "idiopathic neuropathy." So, translation is "who the hell knows what is causing it." At one point in all of this he said it is probably not MS related since it is peripheral and not central. Okay, I can deal with that. But the EMG neurologist said it isn't peripheral since the testing of the peripheral conduction pathways is normal. So, the veterinarian's opinion is that it is related to the MS, but there is no way to link it to the course of the disease right now. I guess I have to live with that for now.
Another thing I have learned (I kind of already knew it) is that not every bad physical thing that happens is related to the MS. Take for instance the black eye I recently had. I ran into the wall at the gym. I didn't fall, I didn't miss a step. I took a step to the side as someone was coming around a corner and face-planted the wall. Just from being a klutz. But after the running jokes about Amy decking me, everyone asked if I was okay, was I having any problems. No problems, just in too much of a hurry.
I also learned to keep the MS in mind, no matter how good I feel. It will come up and bite you if you forget. This was the lesson of Yom Kippur. I feel good. My health is good. Yom Kippur is a day of prayer and spiritual awareness. Part of that is fasting--paying attention to the needs of the soul instead of the needs of the body. But, you have to be conscious to fulfill the part about being spiritually aware. I decided to do a bit of a fast. Very small breakfast....and unfortuantely that is most of what I remember about Yom Kippur. I apparently had a dramatic drop in my blood sugar, about fainted during morning services, went to afternoon services, did one of the blessings (over the protests of my wife and my rabbi), and made it to the break fast party and found out I had scared everyone to death. The technical definition of what happened is that people with MS sometimes have problems with gluconeogenisis (making glucose from the body stores). The reality is I ignored the MS and what my body needed because of it. On Yom Kippur we pray for forgiveness for our sins of the past year. Was it arrogance, ignoring myself, ignoring the people around me who love me? What ever it is, I have a little more to atone for this year. But, I will eat first.
The most important thing I have learned really isn't new information. My daddy always said "Attitude is everything." He always taught me to be positive and to continually strive for improvement. I didn't always live up to it, but the older I am, the smarter my parents are. I have had reinforcement this year that a positive attitude will get you much farther than anything. That attitude is has me finishing a marathon with my knee screaming. It gets me through a day where there is chaos, everyone pulling me from all sides, wondering if it is ever going to end. I have learned to keep a positive, upbeat attitude and just roll with what is in front of me, whether it is muscle spasms or a crazy appointment book with one tech. Just keep putting one foot in front of the other--the craziness can't last. It always burns itself out.
The final and best thing is that I was able to get married. Yes, I have been with Amy since 1997. In 1999 we had a ceremony that was beautiful and meaningful. A rabbi in East Tennessee had the chutzpah to do the ceremony against the norms of the time. But it was not legal. There was only a power of attorney and my parents knowing what I would want giving Amy the right to make medical decsions if something should happen. Then Maryland pa ssed the marriage equality act. The blessing we got when it passed and the "engagement" was official was "finally the state recognizes what the rest of have always known."
So 2013 has been a good year. I have learned a lot. I have grown a lot. Most of it has been positive. There has been some bad, but it has always worked out exactly like it is supposed to. I am blessed to have a loving wife, wonderful family, and a group of friends who are like family. What else could I want out of life?
