Diet and MS

As anyone who has read my blog knows, I am a huge advocate of diet being part of the management of the disease.  I also know that what affects me doesn't necessarily affect someone else the same way.  For the last six months, we have eliminated gluten from our diet. This plan was based on a lot of research that says the inflammatory reaction that can be triggered by the gluten can make the MS worse.  I am up for trying anything that will help.  In the last week, I had two dishes that probably had gluten--one was made with soy sauce and the other had a small amount of binder. Both dishes were really good.  However, a few hours after, my legs started having the sharp, burning pains, my balance was off, I became very fatigued.  After the symptoms started, I spoke to the cooks and found out the ingredients. The dishes were dinner and I had had some crazy days.  So the question became food or fatigue.

To investigate this, we decided to do a challenge test.  Not a blind challenge.  I am the main cook when I am home and we wouldn't have bought the ingredients to have in the house anyway.  There was a lot of discussion about psychosomatic reaction, but it was the only good way to test it.  Having a reaction a few hours after eating a particular food is how I stopped eating red meat.  Ultimately, whether it is physical or mental, does it matter if you eat something and then feel horrible?

What I know is that shortly after the meal, I felt bloated and lethargic.  A few hours later, my balance was a little off and the sharp burning pains started in my calf and ankle.  I had a tough time sleeping that night.  The next morning, my hands are tingling, my face (trigemminal) is tingling, and my foot is asleep.  I felt none of this yesterday morning.  So, that kind of answers the question for me.  If it is something that makes me feel bad, then I need to skip it.

There are blood tests to check for gluten sensitivity.  There is endoscopy and biopsy to diagnose celiac disease.  For me, if just making the diet modification solves the problem, why do that?  I am just going to stick to my diet and not worry about the "diagnosis." 

Depression

For all of the bad things that living with MS can bring, I truly believe that depression is worse. People don't want to believe that it is a disease.  And worse than that, is that no one really knows how to treat it.  It is cyclical--like my MS, it could be called relapsing-remitting.  So time is spent figuring out how to keep it together for going to work, managing everything at home, and just basically remaining functional,  all while fighting the urge to load some stuff in a backpack and disappearing.  I have absolutely no doubt that that is how some people end up homeless.

It has been shown that the effects of exercise and the effects of antidepressant drugs are about the same.  The side effects are greatly different.  Exercise: side effects include weight loss, production of vitamin D from being in the sunshine, the ability (sometimes) to better. Antidepressant drugs: side effects include weight gain, lethargy, possible suicidal thoughts (I swear it is on some of the labels).  By that, exercise is definitely better.  The hard part is making yourself get up, put on your shoes, and get moving. It is a whole lot easier to take a pill.  For me, that doesn't work.  Sometimes it even makes it worse.

Today a friend of mine did me a big favor.  My work out had already been short--but I had done something.  I was talking about the reasons I probably wasn't going to run today.  She listened, commiserated some, then gave me a friendly "challenge" and the kick in the butt I needed to go finish get my run.  It was still a short work out.  But, in the end, I feel better than I would have if I had just quit. 

That is an instance that totally explains depression.  It is very easy to get caught in reasons why it is there, why you can't do anything about it, and to be lost in the mental black hole.  Once you see it, you are obligated to do something about it, even if it is just that first step. It is hard. And some days all you can do is go from point A to point B and that is about all there is, no extra.  But, if you push through it, it will eventually pass.  But, damn, it is a tough road.

cheaper than therapy

People ask me, "what do you do when you are really tired?"  The answer: I run.  When you don't feel good? I run.  What about those crazy, kick your ass kind of weeks?  I run.  As counter intuitive as it seems, the worse I feel--tired, depressed, yucky feeling, the more I need to run.  I may only run 3 miles, but I go run.  Afterwards, I feel better.  It isn't the feel better like the sun just came out from behind the clouds and everything becomes bright and happy.  It is more like the feel better that says I can go through one more day. Things aren't nearly as bad is they could be and I can keep going.

Is the mental and physical demand for a run similar to an addiction?  Probably, at least in part.  The endorphins that are released with physical exercise cause a physical reaction in the brain similar to the reaction the body has when drugs are consumed.  That makes you feel good.  And the addiction comes from looking for that next hit to make you feel good. And as anyone who has ever had problems with drugs will tell you, you spend a lot of time looking for that next fix to feel good.  The advantage with running is that it is a lot healthier than other addictions. It is cheaper, too.  Having done the math on my former cigarette habit (1 1/2-2 packs a day), I can guarantee that running, even with shoes, entry fees for races, travel, and clothes, it is still cheaper. 

More that the addiction, is that it keeps me as healthy and functional as I can be.  I have not been feeling that great for the last couple of months.  I have been really tired, having more muscle spasms in the middle of the night than is average, my hands feeling like the hamburger helper glove.  What I have found is that when I don't run or go to the gym, that night and the next day, all of those feelings are worse.  Some of these days, it is hard to drag myself out of the house.  Usually once I get going, I feel better.  I run outside, I lift, I do something.  Usually in the morning, because by evening, I am done.  In the evening, it is more of a slog than it is other  times.  But the most important thing is to go. 

So, each day, I run.  Some days are a little slower. Some days are a little shorter.  But everyday is something.  That is what keeps things okay and keeps me going.  As my headband says:" cheaper than therapy."

Finally spring...

I run outside year round in all weather.  I run in the cold, I run in the rain...I don't run in the cold rain.  And I don't run if there is snow/ice on the sidewalk.  I don't want to fall.  There is enough risk of that without any help. Because of this, I have spent a lot of time on the treadmill this winter.

But, it is finally spring.  It is warm.  The sun is shining.  Trees and flowers are starting to bloom.  And I am blessed to not have allergies.  That is right.  Flowers blooming, oak pollen (which there is a lot of around my house), molds from under the wet leaves that have piled up....none of it bothers me.  I might get a stuffy nose from mechanical irritation from so much stuff floating around, but no itchy eyes, no swollen sinuses.  So I can run outside in the spring with no problems.  And this is my favorite time of year to run. There is sun, the temperature is perfect, and it doesn't get dark too early.

My favorite place to run is down by the water.  If you saw the video (http://www.healthcentral.com/multiple-sclerosis/d/LBLN/living-with-ms/?ic=colnav)  
you saw the pictures of my favorite place.  What you can't see in that video is that it was damned cold that day.  I had a sweatshirt and the crew was wrapping me in blankets between takes.  Luckily I was running slowly, so I didn't get too sweaty and have a wet shirt on.  But I do love to run there.  

I have also started cycling.  I am going to be riding with a team for the bike MS event.  I enjoy the ride, but it isn't a run. It would probably be better if I didn't have to load the bike to go somewhere to ride.  I don't like riding on the main road in town.  People are in too much of a hurry and don't see the cyclists.  

Either way, it is spring.  Between working in the yard, getting the flowers to grow and trying to grow some veggies and running in the sunshine, my favorite time of year is here.   Get outside, get some sunshine to heal the winter depression, and enjoy the season.  It will be summer and hot soon enough. 

Fatigue...

I am not good at slowing down.  I work hard, I play hard, always finding time for a run in the middle of it.  But sometimes, you just have to stop.  Fatigue is a very real thing with MS.  If you try to ignore the disease, it will bite you.

I had that experience this weekend.  I have had a busy week.  Work has started picking up again. That is a good thing. Then, on my day I should have gotten home early, there was a wreck that had traffic stopped for 2 hours.  Instead of waste that two hours, I went for a run.  I was late getting home and late getting to bed.  Next day, get up early, followed by an exciting, but late, night.  As that day drew to a close, I was done.  We were standing for the final prayers.  Suddenly, I was dizzy, my legs were tingling and getting weak, I was hot.  Instead of falling down, I sat.  Some days I am smarter than others. Amy brought me home and put me to bed.  The next day I slept for about 4 hours, got up for a few, and then went back to bed for another 10. 

The fatigue with MS is very different from just being tired.  For me, it manifests as both physical and emotional--probably the depression jumping in too.  My arms and legs tingle and hurt.  My legs are weak--just squatting down to pick something up is a challenge.  My vision is off--it is like I am looking through a prism.  I have a hard time holding on to things.  I cry easily. I don't know if that is part of the problem or if it is just the manifestation of the fear.

I think I just needed some rest.  It is better today.  My legs aren't quite as heavy.  I can pick things up a little easier.  But it is always a reminder.  MS is there.  And don't you forget it.  It will be ok.  Today will be an easy day, going back to feeling better and getting back on schedule for everything.  That is the best fatigue management tool there is....keeping everything on a schedule.  

Karma and Living Well

I ran the Rock and Roll half marathon on Saturday. It was a great run. The last part of the pictures and filming was done at the start line--after I found them--and at the finish . At the expo, I visited the MS Society table.  They finally have a charity run team for races, in this case, the Marine Corps Marathon.  It has become a lottery to get in, but as a member of the charity group you can get in with the fund raising.  This disease needs some help.  It is a bad disease.  I am lucky.  Mine isn't as bad as some.

Early in the race, probably before mile marker 1, I saw a woman with a MS shirt and orange tutu on. I started talking to her.  She is a member of Team  Strike Out MS.  She was running with a group from her work.  They invited me to fall in with them, and we ran the whole race together.  It was a very cool experience to run with a group.  The group stayed together--pit stops, water stops, all of it.  The pace was based on the group need.  Whether it was the group or the bonding with the MS team, I don't know.  I know it was one of the best races I have ever had.

I had my cheerleaders at the finish line.  Amy and Sandi had finished their run and ignored/avoided the crew in the finish coral trying to get them to move away.  It is always better when you have people waiting at the end.  They couldn't go to bag check to get their sweatshirts or they wouldn't have gotten back.  I am glad they waited.  Fortunately, this time, I didn't fall down.

The film crew did their final shots/interview after the race.  They were asking me questions like "how was it," "how did you feel," and I am not sure what else.  Now I understand when athletes get asked questions at the finish line why they aren't as articulate as other times.  I had a hard time coming up with words.  My ultimate answer to how do you feel during the race was "joy." Joy to be able to run, joy to be able to finish. 

I am going to be joining Team Strike Out MS for the Bike MS at National Harbor.  I will be running as part of the MS Society team for the Marine Corps Marathon.  Those of you who know me know I am not usually much of a joiner.  Not much in the fund raising thing.  It looks like that is changing. Karma puts you where you need to be when you need to be there.  I am working on figuring out ways to reach out and help.  People with MS need hope.  My writing has started this, then the Runner's World article, then the web documentary, now a whole team.  I have said it before.  My MS isn't like yours.  But everyone has to make it as good as it can be.

Sharing the story

I could never be a professional actor!!!!  I spent last weekend being filmed for a documentary based on my life and the subject of this blog--living well with MS.  Don't get me wrong.  It was a lot of fun.  I have great friends who served as "extras" and were my back up.  The film crew was great.  They kept us fed and fueled with coffee. There were a lot of laughs.  But, that would be a tough job to do every day.

The purpose of the documentary is what I write about. Living well with the disease, not letting it take over and destroy your life.  I told the story how I see it.  I know how hard it is to get through this disease.  I know how tough it is to figure out what you are going to do to make everything work--job, family...managing it all while feeling pretty bad.  But I also know how to get out of the depths of despair.  You have to find what gives you strength so that you can continually be moving forward.  My strength comes from my wife, my faith, and a good run on a regular basis.  Not to mention being blessed to work really hard at a job I love.

We have been working on some nutritional aspects of our life to improve it.  There is not a lot of research about nutrition.  But a lot of people are talking about it.  Whatever name tag you put on it....gluten seems to be a big culprit for a lot of people.  Another thing being investigated--and there is actually a study going on--is all grain--"paleo" diet.  I haven't started with that.  I have a little bit of mental reservation--I love my oatmeal for breakfast.  But, it might have to change. 

For now, I am healthy, MS not withstanding.  I feel good.  With the diet changes I have made so far, I can feel more of my feet and my handwriting is starting to improve.  It is a start.  For everyone, keep trying to find what is going to make your life better.  Maybe you can't go run.  Go for a walk in the sunshine .  Dance in the kitchen with your wife.  Whatever you do, do SOMETHING.  It will start changing your life.

Nutritional treatment

Anyone who knows me knows that I am serious about nutrition being part of management of this (and any other) disease.  For many years, Amy and I have been avoiding the additives and processed foods--things like high fructose corn syrup, nitrates, and foods with ingredients we can't pronounce or identify.  The second step in this has been switching to organic milk and meat.  I am allergic to three classes of antibiotics.  Somehow, I am not allergic to the penicillins, which is the most common allergy.  Large scale farming uses antibiotics both to protect against infections in over-crowded and dirty environments and as a growth promoter.  I also know people who have developed allergies in reaction to exposure from meat and milk and who have antibiotic allergies and have allergic reactions to commercial meat and milk. Based on these things we have decided to use only organic milk, eggs, and meat (we only eat chicken).  Most of our vegetables are coming from the CSA or are organic. "Round-up ready" anything scares me.

Now for the next phase of this.  When I was first diagnosed with MS, a friend told me about someone she knew who had managed his disease by adopting a gluten free diet.  I tried it.  But, I am not sure I did it right.  It was a lot harder 15 years ago.  But, nothing explains or treats the peripheral neuropathy that I have in my hands and feet.  There is something called "non-celiac gluten sensitivity." It causes peripheral neuropathy.  So, it is time to go back to nutrition.  We have adopted a gluten free diet.  At the same the, we are not switching one for another.  We didn't eat a lot of pasta, snack foods, and bread before.  Just when we have them, we are going without gluten. 
 A lot of the recipes we are finding and trying are listed as "paleo." That makes things easier because it isn't adding back in some sort of alternative grain. 

Ultimately, the diet we are doing is one that makes us feel healthier.   We have eliminated the processed stuff.  We are eating more vegetables.  Leaving off the heavier stuff for dinner--especially since dinner is usually about 9:30pm when I get home from work. Amy is learning to make challah.  Two attempts and the second was definitely better.

This is part of how I have always lived with my MS.  Years ago I asked my doctor about diet.  He said there was no supporting evidence, but if it made me feel better, go ahead.  This is one I disagree with him about.  There haven't been any formal studies done, but there is too much information about how people have improved and a lot of information about some of the stuff we are putting into our bodies and calling "food."  If I get back even half of the feeling in my hands and feet, I will never look back.

what happened last year

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?

Depression

I have tried to be a generally upbeat person, dealing with the issues related to my disease and not letting it get me too far down.  The flip side of that is there is another process going on. Depression is its own disease, and one I have fought with for longer than I have fought the MS.  Add to that, MS can contribute to depression--whether it is an addition to the disease process or the compounding of everything that is going on, who knows.  But does it matter?

Depression is a beast.  It makes me feel like I am smothering.  I can see things happening around me, to me, as I am doing, but it is like I am watching from a distance.  The worst thing about it is the overwhelming feeling of being alone, unloved, not needed.  My head--the part that can pull away from all of this--knows this isn't true.  Professionally, I have had people tell me they need me, trust me, want me to be the one to take care of their animals.  That means I am doing what I always wanted to--I am the family doctor that people trust.  Personally, I have friends that love me.  People want me to join them for things.  We talk or do things when my crazy schedule allows.  My life gets so nutty because I have a lot of friends. Events at synagogue, dinner and a board game turned into a drinking game by forty/fifty somethings, an upcoming camping trip.....I can see these things.  And yet, I get that overwhelming sense of alone, sad, empty.  Fortunately, I have been through this enough times in my life to know those feelings aren't accurate.

Depression is like MS.  People can't see what is going on, so for many, they don't see the disease as something that is happening. When it can be seen--random crying fits, sleeping excesissively, sudden weight gain/loss--a frequent response is "you know that isn't true."  This is where "real" and "true" are two different things.  While it may not be true, it is the reality that is existing in your mind and it is what is real.  I have learned to counteract or sometimes just ignore those feelings.  But there are many who haven't. 

Ignoring it doesn't mean the feelings aren't there.  I know from vast experience, it will pass if I can just ride it out.  I have been on most antidepressants used (at least everything used until about 10 years ago).  I have been hospitalized for treatment of severe depression, including suicide attempts.  The only thing I can say about that is that it wasn't successful because I am meant to be here.  For me, drugs aren't an answer.  At best, I become so flat that there are NO feelings--bad or good.  At worst, it makes everything worse.  Add to that, weight gain, lethargy, and inability to think clearly. No thanks.  I will stay over here under the dark cloud, because at least I can see the cloud.  And the dark cloud will blow away.

About 10 years ago, I decided that the drugs weren't helping.  At that point I wasn't doing anything else, except ignoring it when it came up.  Over time, I have discovered some things that help.  Get enough sleep, but not too much.  That is one hell of a balancing act when trying to figure out if the overwhelming fatigue is related to the physical symptoms that are going on  or the mental symptoms that are going on.  Diet is also a big deal.  Junk makes it worse.  I am pretty sure that sugar makes it worse--great, I crave chocolate (it can help with depression for a minute), but it starts the roller coaster ride.  And exercise....yes I am a running junkie.  I am a gym rat.  Those of you who knew me in a previous lifetime know how crazy that is.  The medical profession has shown that exercise helps.  The endorphins, the act of getting up and moving, this helps with depression.  So, I know it is a good thing.   Going for a run beats alternatives that can be.  Sometimes it is hard to convince myself to get up and get moving, especially on a dark and dreary day.  But, it helps.  Even if just for a little while. 

Runner's High

Today was my long run.  Someone asked "why?"  Especially after I fell Friday night.  The short, possibly smart ass, answer is "because I can."  But there is more to it than that. A lot more.  When I run, I feel better.  The demons that are MS and depression and fear can't come on a run.  For that period of time, my mind is quiet.  I quit running with music all of the time about a year ago.  My trainer told me I needed to be able to pay attention to my body and my pace.  So I started running the shorter runs without music.  Then my mp3 player died.  That doesn't surprise me. What surprises me is that it lasted as long as it did.  It wasn't waterproof and when I run, especially in the summer, it is like someone turned the hose on me.  I haven't replaced the player.  Maybe I will, maybe not.  The time I run is peaceful.  I ask myself questions and figure out what is going on in the depths of my mind.  I pray.   I meditate and look at my life.  And then there are the times that my mind is silent.  That is the best.  All of the fear, all of the frustrations, all of the questions just stop.  I become more aware of my feet, one step then another.  I hear my breathing.  I feel my muscles.  The  silence is precious.  I just want to keep going.  Where is the turn-around?  Who cares.  How far have I gone?  Not far enough.   I am aware of where, how far, how long I need to run, but sometimes I wish for more.   I always tell someone my route and a time estimate of how long I will be gone.  For reasons of safety, I don't change it.  There is a cushion of 15-20 minutes.  If I say 3 and a half hours, don't worry until about 3:45.  At 4 hours, come find me.  I also don't push farther than I am supposed to go based on my training schedule because I don't want to hurt myself.  That sounds like hell--hurting myself doing something I love, then I can't do it anymore. 

I guess the real answer to why I run, is to make my mind be quiet.  Just for a little while.  For that time, the demons are gone.  They can't keep up.  They always come back, about the time I hit the road to my house and I start walking to cool down.  But, at least is it quiet for a  while.  Maybe some day they will be gone.  For me, that is the runner's high.

What if.....

I don't know which is harder.  The uncertainty of chasing down the symptoms and finding out what is causing it or dealing with the symptoms themselves.  Fortunately, most of the time, it isn't painful.  There are exceptions.  When my face has the trigemminal nerve spasms it feels like someone is holding a hot poker against my face.  This is an improvement over the trigemminal issues that led to surgery, but it is still damned unpleasant. 

The most frustrating thing is that, at least by the classic definitions, this is not related to the multiple sclerosis.  MS is central nervous system lesions--meaning brain or spinal cord.  I have recently had a brain MRI and it showed no new lesions.  So that means it is peripheral--relating to the nerves in my arms and legs.  Guess what kids. The EMG/nerve conduction study was normal.  According to the doctor who did the test that means the nerves of my arms and legs are transmitting just fine.  REALLY???? So I am making this up?  No one actually believes that.  They do a physical and poke my feet with a pin and I can't feel it.  They hold the tuning fork that should transmit vibration or cold against my toe and I can't feel it.  But, no one seems to know why.

I am back in the position of being the most annoying and aggravating patient the doctor may have.  I am a big believer in being your own advocate.  Doctors are human.  They (we) get frustrated when there isn't an answer.   There is a path that is followed based on physical exam and tests.  You go to point A, if this is the result go to this test, if not, go  that one.  This holds true up to a point.  There is something called "idiopathic peripheral neuropathy."  Idiopathic means "we are idiots because we don't yet understand the pathology."   Not really, but that is how one of my professors explained it.  It does mean we don't know why this is happening. I tell clients it is "doctor speak" for "we don't know what the hell is going on."  I have been told that may be the final answer.  So, for now, I am going to keep bugging them until we get to the end of any possible path.

In the meantime, I have to keep my stress down and be as okay as I can be.  We all know I have traded addictions.  I used to use chain-smoking  and junk food eating, and throw in a drink or three as my source of comfort.  Now, I use a run, the longer the better.  Some days that long run becomes more of a challenge than maybe it should be--legs cramp up, back hurts....but it is a hell of a lot better (and cheaper) than two packs of Marlboros a day with one or two sodas thrown in for good measure.  I am trying to find a way to deal with all of this.  I freely admit I am scared about it.  What if there is no good answer?  That worries me much more than what the cause might be.  I can be okay with whatever answer I get, I just need an answer.

What I learn on a long run

Long runs are great opprotunities for learning...is my training right, how is my pace, what is my body doing.  Sometimes it is also a time for learning about my emotional and mental state.  Today was one of those days. 

What I learned kind of surprised me.  I am angry.  I am angry at myself.  I am angry at my body.  I am angry at God.  I had a serious bout of this when I was first diagnosed with MS.  I got over it.  It took awhile, including yelling at God and at some people who love me and sat there and took it until I got it out of my system.  But, I got over it.  And I figured out how to live with the disease instead  of spending so much time fighting the disease.  Things have been going really well.  Until recently....

Today's long run was no exception.  I was doing ok, holding a pretty good pace, then my leg felt like I was stepping on a knife.  I know as you reach the end of a long run, it hurts.  Your legs are tired, your back aches.  But usually it is a "good" hurt.  Yes, that is an oxymoron, but it is true.  It isn't sharp, damaging kind of pain.  Usually I can keep going with this.  Not so much today.

I have been dealing with this peripheral neuropathy thing for about six months.  There isn't a good cause that has been found, thus far.  It dawned on me during my run that one of my early lesions was in my spinal cord.  So, there is probably going to be a more extensive MRI in my future, depending on the results of the EMG. I am going back to square one.  Blood work to check vitamin B-12 and folate among other things.  Then an EMG/nerve conduction study.  That was the first of the series of tests that led to the diagnosis.  I have made so much progress both physically and mentally, and now we are going back to the beginning. Really?

As for  the progress physically...I feel like there is regression.  The fatigue I am experiencing is horrible.  I make myself go run or go to the gym because I feel like if I don't I am giving in to another piece of it.  Not to mention it keeps me a little saner than I would be otherwise.  I go lift weights or go run sometimes at the times when in the past I would have sat outside with a soda and smoked half a pack of cigarettes.  Addiction is addiction, but this is definitely healthier.  But I am so tired and frequently feel like I can't keep up. 

As I was running today and my leg started to hurt so badly, the anger came rolling out.  "Really God.  I got it together, I deal with  the aspects of this disease, so now you are going to take it away again?  Have I not done what I am supposed to do?  I eat right, I exercise.  Past that, I am a good person, I give back to the world to make at least my corner of it a better place." For about 5 miles, I cried, I yelled, I tried to run--mostly walked about 4 of those miles.

 A very wise woman once told me "say your prayers, sweetie, and everything will be okay."  On Wednesday this week another woman, who has never met the first, told me the same thing.  Two people two different times, two different places can't both be wrong.  So, I say my prayers.  There may still be some arguing with God, but I know the ultimate answer.  I keep doing the things I do to make myself as okay as I can be.  And I try to let the people who love me in. But, damn I am mad.

It doesn't go away

I am sure anyone with a chronic disease has experienced this.  You think you are at a good place, your disease is stable, maybe you can even ignore it, then WHAM!!!!  It kicks you in the gut and reminds you that it is still here and you better not forget it.  This has happened to me with a 1-2 punch.  First, I have been experienceing the peripheral neuropathy.  This has been going on for a while.  I have been mostly ignoring it.  Some days I have a hard time drawing blood.  When I run, the pins and needles and tingling goes farther up my legs than it was and my arms are asleep to my elbows.  It doesn't stop a run, just makes me pay attention to where I am putting my feet.  When I lift weights, I have to lift lighter so I can hold on to the dumbbells.  My hands don't always want to hold on. But I work, I run, I lift. I feel pretty good.  Most people who know me can't believe there is a custom wheelchair in my laundry room that was in daily use until 2008.  Those same people have a hard time believing I weighed 240 pounds and smoked two packs a day.  Now I am healthy, even with the MS.

Now for the part that is where maybe I forgot the disease. Or at least tried to.  Yom Kippur is the Day of Atonement.  It is a day spent in prayer.  You fast.  Pay attention to the needs of the spirit, not the comfort of the body. God doesn't expect you to make yourself sick. If you already have health problems, don't make it worse. I know I can't fast.  I have to take my medicine and I need some food to do that.  In the past I have eaten my normal breakfast.  I was told by a wise rabbi once, "don't you dare.  It isn't what is needed from you on that day."  When I was told that, my wheelchair was as much a part of me as my glasses.  So, this year, I tried to do it a little differently. I decided to eat a light breakfast.  That way, I am not doing a complete fast, but I am challenging my body to step away from the ordinary, from comfort.  BAD IDEA.  I didn't even make it through morning services.  I got light headed, I am told I was pale, and I am pretty sure I almost passed out.  Amy took me out--more accurately drug me out.  I left, ate, and laid down for a little while.  I went to afternoon services and tried again.  People who saw it said it was scary to watch. 

That night, my blood sugar was low, even after a big meal.  One of the things we ask forgiveness for is arrogance.  My rabbi pointed out that thinking I could do that was probably arrogant.  On the other hand, the fact that I feel so good that I thought  I could deal with this like everyone else is what caused me to do it in the first place.   I have found two papers that say some people with MS have impaired ability for gluconeogenisis (making glucose from body stores). I saw my doctor recently, and he said it definitely sounded like a hypoglycemic event.  He also said he is pretty sure God will forgive me if I don't fast.  So, to my wife and all of my friends who had to witness my stubbornness that day, I am sorry.  I don't want to wait until next Yom Kippur to say I am sorry to all of you.