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?
Tuesday, December 31, 2013
Wednesday, October 16, 2013
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.
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.
Sunday, October 13, 2013
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.
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.
Monday, October 7, 2013
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.
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.
Sunday, September 29, 2013
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.
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.
Thursday, September 26, 2013
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.
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.
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