My wife and I live in a part of New Mexico that doesn't get much rain. It is usually hot during the summer and many days it is very windy. Today was not one of those days. Today was cold, wet and dreary and we really enjoyed the change. My wife normally doesn't do well when the weather changes drastically and she did pretty well today until it started cooling off this evening. As the day became cooler, her bones started aching and she started hurting. She had to leave class at church tonight and go sit in the suburban with the seat heaters on so that she could get some relief.
One thing my wife regrets doing during her diagnosis was having a spinal tap. The doctor convinced her that the spinal tap would help diagnose her MS so she went along with the procedure. The doctor must have messed something up because ever since this procedure, my wife has had low back pain where the needle was placed. This has been a major frustration for her since the procedure was not done properly, then her health insurance didn't cover it. The doctor was worried about my wife's family suing him because of this, but that is just not the way her family does things. We were still paying medical bills in the first years of our marriage that the insurance company wouldn't pay during the diagnosis.
Tonight my wife's back began to hurt very badly where the spinal tap was done. She used the heated seats until we made it home then she took a hot bath to warm up. After the bath I could tell that the cold had sapped her of energy so she went to bed early tonight. It is so strange how she becomes so cold to the bone that it takes a hot bath or heated blanket to warm her body back to normal. Once she is warm, the pain subsides and she is ok. Today the cold and wet was just too drastic from the dry heat we have been having. The rain was great but the transition was just too much for her body to take.
Wednesday, July 22, 2009
MSG Makes Me Feel Funny
We have heard all the chatter on MSG for the past few years and when we were helping the Naturopath, there were a lot of patients that had problems with them. We heard everything from headaches to sickness to allergic reactions. There are articles all over the net that talk about Multiple Sclerosis and MSG. Tonight my wife and I ate at a local restaurant that serves a homemade teriyaki sauce. My wife and I have both eaten this sauce many times and haven't noticed any issues before tonight. While my wife was eating her food tonight, she began to feel "funny". She couldn't explain how it felt but she knew that it just didn't feel right. After sitting and not eating for a few minutes the feeling passed and she wasn't sure if it was the food or something else. As soon as she ate another bite she began to get that "funny" feeling again.
We asked if they knew whether the sauce had MSG in it, but they were not sure. I know that my wife has had some issues before with some foods that contain MSG but not with all foods that contain MSG. Even foods like Hot Cheetos makes her mouth itch and the top of her mouth physically hurt, not from the hot but from something in the flavoring. There are certain foods she stays away from for these weird reactions. Lately my wife has been going through another one of the times where almost every meal she becomes sick. Tonight was no different, and her stomach became upset about 45 minutes after we ate. I am not sure what the connection between MS and MSG is but I know that it is better for us to stay away from it. We are usually very aware of MSG in the foods we eat and have thrown out all spices etc. that contain it in our home. Tonight was just another friendly reminder that we need to be careful about what we eat and how it affects our bodies.
We asked if they knew whether the sauce had MSG in it, but they were not sure. I know that my wife has had some issues before with some foods that contain MSG but not with all foods that contain MSG. Even foods like Hot Cheetos makes her mouth itch and the top of her mouth physically hurt, not from the hot but from something in the flavoring. There are certain foods she stays away from for these weird reactions. Lately my wife has been going through another one of the times where almost every meal she becomes sick. Tonight was no different, and her stomach became upset about 45 minutes after we ate. I am not sure what the connection between MS and MSG is but I know that it is better for us to stay away from it. We are usually very aware of MSG in the foods we eat and have thrown out all spices etc. that contain it in our home. Tonight was just another friendly reminder that we need to be careful about what we eat and how it affects our bodies.
Saturday, July 18, 2009
How Much Stress Does MS Put On Our Daughter
My wife and I chatted awhile today about how much our daughter has dealt with concerning my wife's Multiple Sclerosis. My wife was diagnosed with MS over 20 years ago and always wanted four children. We were blessed with one beautiful young lady who is twelve now, and has dealt with her mom's MS since birth. We have come to realize that my wife's MS has had a part in shaping the way my daughter views disease, the world and life in general. Even at twelve, she still doesn't understand all of it, but she is affected by it almost daily.
Right after we were married my wife and I spoke with Dr. Roy L Swank about how Multiple Sclerosis would affect pregnancy and us having a child. Dr. Swank explained that my wife could have a child and that we just needed to plan well for the birth, and for my wife to follow the Plasma protocol. The pregnancy went smoothly and the birth went without complications. We followed the Plasma protocol and my wife felt great during the first few months of having a newborn baby. She breastfed our daughter and went through all of the sleepless nights without any issues. I tried to give her time to rest as much as possible and she had limited issues during the first few years of our daughter's life.
The few issues she did have could be traced to specific circumstances. I don't know that our daughter experienced the first few years of her life any differently than any other family. Just like we do now, my wife tries to rest often, eat right and de-stress as much as possible. As our daughter moved into the third and fourth years of her life she probably noticed that mommy needed rest often and that we didn't participate in everything because it wasn't always the best timing. As I write this I can't think of anything in particular that would have left a large memory of the disease during those first years.
At five, our daughter had her first major experience with my wife's MS. My wife went numb from her chest down for over a month and our daughter actually remembers her mommy not being able to come to some of the school functions during that time. My wife couldn't walk or really even hold her during this time, so I was taking care of our daughter and her. I know that there were moments that my daughter was scared and didn't understand why mommy wasn't able to do normal things. She would ask some hard questions and I did my best to explain, but it never felt adequate. When my wife did get better and could walk again, you could tell a difference in our daughter. She had been holding stress through this whole time and that stress showed itself in all sorts of ways.
Since age five, our daughter has learned more about the disease and how it affects her mommy. She has expressed fear, anger, sadness, hurt, disappointment, hate and a range of other emotions concerning how MS has affected our family. There have been activities we have not participated in due to the disease and she knows it. Sometimes she becomes angry or jealous of her friends when we can't participate and sometimes it is hard for her to accept. She and I have had many daughter/daddy talks about how our attitude affects her mommy's health and sometimes I feel really bad about how much pressure that puts on her.
She is an AWESOME daughter and she has had to deal with some major struggles over the years. I can't imagine having to deal with those issues as a young man like she has. She has her moments when the stress of it all comes out and sometimes she will lash out at my wife. It is hard to watch, and it pains me to see the hurt on my wife's face when my daughter blows up on her, but she handles it so well. I asked my daughter to write a blog a little while back and she started writing about MS from her perspective. It was interesting to see how her young mind processes the disease. Not too long ago she asked the question I have dreaded from the beginning - "Will I have MS since mommy has MS?". That was a day full of a lot of praying that I would have the right words for her. Being a dad is hard enough, but try to explain a disease that no-one understands to a young girl that is worried she will also have it. It can make for some sleepless nights. I know that my wife's MS has caused some stress for our daughter and I pray that she will come to view MS as I do, a chance to bless our family and others.
Right after we were married my wife and I spoke with Dr. Roy L Swank about how Multiple Sclerosis would affect pregnancy and us having a child. Dr. Swank explained that my wife could have a child and that we just needed to plan well for the birth, and for my wife to follow the Plasma protocol. The pregnancy went smoothly and the birth went without complications. We followed the Plasma protocol and my wife felt great during the first few months of having a newborn baby. She breastfed our daughter and went through all of the sleepless nights without any issues. I tried to give her time to rest as much as possible and she had limited issues during the first few years of our daughter's life.
The few issues she did have could be traced to specific circumstances. I don't know that our daughter experienced the first few years of her life any differently than any other family. Just like we do now, my wife tries to rest often, eat right and de-stress as much as possible. As our daughter moved into the third and fourth years of her life she probably noticed that mommy needed rest often and that we didn't participate in everything because it wasn't always the best timing. As I write this I can't think of anything in particular that would have left a large memory of the disease during those first years.
At five, our daughter had her first major experience with my wife's MS. My wife went numb from her chest down for over a month and our daughter actually remembers her mommy not being able to come to some of the school functions during that time. My wife couldn't walk or really even hold her during this time, so I was taking care of our daughter and her. I know that there were moments that my daughter was scared and didn't understand why mommy wasn't able to do normal things. She would ask some hard questions and I did my best to explain, but it never felt adequate. When my wife did get better and could walk again, you could tell a difference in our daughter. She had been holding stress through this whole time and that stress showed itself in all sorts of ways.
Since age five, our daughter has learned more about the disease and how it affects her mommy. She has expressed fear, anger, sadness, hurt, disappointment, hate and a range of other emotions concerning how MS has affected our family. There have been activities we have not participated in due to the disease and she knows it. Sometimes she becomes angry or jealous of her friends when we can't participate and sometimes it is hard for her to accept. She and I have had many daughter/daddy talks about how our attitude affects her mommy's health and sometimes I feel really bad about how much pressure that puts on her.
She is an AWESOME daughter and she has had to deal with some major struggles over the years. I can't imagine having to deal with those issues as a young man like she has. She has her moments when the stress of it all comes out and sometimes she will lash out at my wife. It is hard to watch, and it pains me to see the hurt on my wife's face when my daughter blows up on her, but she handles it so well. I asked my daughter to write a blog a little while back and she started writing about MS from her perspective. It was interesting to see how her young mind processes the disease. Not too long ago she asked the question I have dreaded from the beginning - "Will I have MS since mommy has MS?". That was a day full of a lot of praying that I would have the right words for her. Being a dad is hard enough, but try to explain a disease that no-one understands to a young girl that is worried she will also have it. It can make for some sleepless nights. I know that my wife's MS has caused some stress for our daughter and I pray that she will come to view MS as I do, a chance to bless our family and others.
Sunday, July 12, 2009
Can't Remember With MS
This weekend we were able to travel to Ruidoso, NM, to enjoy a weekend away. The trip was great, but I am seeing signs of fatigue and emotional stress in my wife. Over the weekend I noticed my wife was not able to recall conversations we have had recently and had forgotten other details. This is not like her and has only happened a few times in our marriage. She normally has a rock solid memory and can recall details about events or activities that happened years ago. These moments of memory loss are far and few between, but when they do happen, it is frustrating and unpredictable.
The other part of her losing memories is her mind not functioning as normal. She goes through moments when she doesn't process information at the speed she normally would and I have to repeat myself for her to understand. Again, this is not everytime or everything, but sporadic and unpredictable. One conversation we had over the past few days I have had to repeat three or four times and I know it is driving my wife nuts to have to ask over and over again. She also has delayed hearing during these times. I will say something and she will ask me to repeat the information. By the time I start repeating the information, she has processed it and carries on the conversation. This can lead to some frustration on both of our parts.
We both know exactly why she is having the memory issues and the mental fatigue. When we moved, our whole lives were turned upside down. Everything from our finances to our schedule is unorganized. We have learned through the years that the more organized we are the more consistent my wife's health. When we are out of sorts like right now, she has more extreme emotions and more MS issues. Multiple Sclerosis is a strange disease in the way it attacks and affects the mind, but we do have some choices. From the beginning we have been told by Dr Swank to minimize our lives and de-stress them to help live a more normal life. We know this works, and after this weekend we realize that we are going to have to take some action quick or the problems are going to become worse.
The other part of her losing memories is her mind not functioning as normal. She goes through moments when she doesn't process information at the speed she normally would and I have to repeat myself for her to understand. Again, this is not everytime or everything, but sporadic and unpredictable. One conversation we had over the past few days I have had to repeat three or four times and I know it is driving my wife nuts to have to ask over and over again. She also has delayed hearing during these times. I will say something and she will ask me to repeat the information. By the time I start repeating the information, she has processed it and carries on the conversation. This can lead to some frustration on both of our parts.
We both know exactly why she is having the memory issues and the mental fatigue. When we moved, our whole lives were turned upside down. Everything from our finances to our schedule is unorganized. We have learned through the years that the more organized we are the more consistent my wife's health. When we are out of sorts like right now, she has more extreme emotions and more MS issues. Multiple Sclerosis is a strange disease in the way it attacks and affects the mind, but we do have some choices. From the beginning we have been told by Dr Swank to minimize our lives and de-stress them to help live a more normal life. We know this works, and after this weekend we realize that we are going to have to take some action quick or the problems are going to become worse.
Sunday, July 5, 2009
Struggling To Lose Weight With MS
You would think that with all the times my wife is sick from eating that she would not have any problems losing weight. She has struggled her whole life to lose weight, and her Multiple Sclerosis only seems to make it more difficult. She was at her slimmest when on the Swank MS diet and is the biggest she has been right now. She has tried different things through the years to lose weight, and is struggling now to shed a few pounds. As a man, it seems to be pretty easy to lose weight but for her, it is a slow, frustrating process.
A few years ago she began a workout program and was lifting and running 3-4 times per week. My wife was a gymnast as a teen so she can build muscle without any problem. When she started working out she was feeling great, but after a few months she started having MS problems. Even more frustrating for her was that she was not losing weight or size. She was doing all of the right things but she was not seeing a difference in the mirror or on the scale. She eventually worked her body into an MS attack and went numb for a month. That is when our search for a naturopathic treatment for MS began.
I know other MS patients that workout regularly and take breaks as their MS flairs or has problems. I know other MS patients that will immediately have issues from short physical exertions, and Multiple Sclerosis is so strange how it affects no two people the same. I know that Dr Swank didn't recommend any physical exercise for years after my wife started the diet, so that her body could use all of it's resources to regain health. After she had shown a good track record, he recommended short workouts and lots of rest. She has done some of that through the years, but after the big attack a few years ago, she has been very nervous about working out too much and over exerting herself.
My wife is an all or nothing person. MS has not stopped her from being all or nothing, just caused her more frustration when it starts to give her problems. It doesn't make a lot of sense that she becomes sick so often after meals, and she still gains weight, but we are going to try something a little different this time. The Naturopath told us one time that women will gain weight in their stomach areas due to poor digestion and parasite problems. So, we are going to go about this totally different than we have before and see if she has better luck losing weight this time. We are going to start with a cleansing process and then work our way into stretching, yoga and other low impact workouts until she can start to handle more.
We need to get her gut clean first though, because we feel like a lot of the weight gain is from poor digestion and her body not utilizing nutrition properly. This seems to be common among patients with auto immune diseases, so we are going to try and document more about how this process works for her. My wife has a huge desire to help other MS patients lose weight, gain strength and flexibility and just gain overall health. As we have in the past, we are going to begin to listen to her body, try different things, and find a way for her to live life the way she wants, not the way Multiple Sclerosis would have her live.
A few years ago she began a workout program and was lifting and running 3-4 times per week. My wife was a gymnast as a teen so she can build muscle without any problem. When she started working out she was feeling great, but after a few months she started having MS problems. Even more frustrating for her was that she was not losing weight or size. She was doing all of the right things but she was not seeing a difference in the mirror or on the scale. She eventually worked her body into an MS attack and went numb for a month. That is when our search for a naturopathic treatment for MS began.
I know other MS patients that workout regularly and take breaks as their MS flairs or has problems. I know other MS patients that will immediately have issues from short physical exertions, and Multiple Sclerosis is so strange how it affects no two people the same. I know that Dr Swank didn't recommend any physical exercise for years after my wife started the diet, so that her body could use all of it's resources to regain health. After she had shown a good track record, he recommended short workouts and lots of rest. She has done some of that through the years, but after the big attack a few years ago, she has been very nervous about working out too much and over exerting herself.
My wife is an all or nothing person. MS has not stopped her from being all or nothing, just caused her more frustration when it starts to give her problems. It doesn't make a lot of sense that she becomes sick so often after meals, and she still gains weight, but we are going to try something a little different this time. The Naturopath told us one time that women will gain weight in their stomach areas due to poor digestion and parasite problems. So, we are going to go about this totally different than we have before and see if she has better luck losing weight this time. We are going to start with a cleansing process and then work our way into stretching, yoga and other low impact workouts until she can start to handle more.
We need to get her gut clean first though, because we feel like a lot of the weight gain is from poor digestion and her body not utilizing nutrition properly. This seems to be common among patients with auto immune diseases, so we are going to try and document more about how this process works for her. My wife has a huge desire to help other MS patients lose weight, gain strength and flexibility and just gain overall health. As we have in the past, we are going to begin to listen to her body, try different things, and find a way for her to live life the way she wants, not the way Multiple Sclerosis would have her live.
Friday, July 3, 2009
Feeling Exhausted With Multiple Sclerosis
This past week we enjoyed a family encampment at Red River, NM. The air was clean, the temperature was great and the mountains were beautiful, but my wife was exhausted from the moment we arrived. This was one of those times when my wife was truly frustrated. We were at the encampment to work and tell others about the programs we offer at the Children's Home, but she found herself resting more than working. She was able to fulfill her work obligations, but she wasn't able to participate in a lot of the fun activities.
We arrived at Red River Sunday afternoon and she was already tired after a full day of me preaching and then driving six hours. I could tell she needed some good rest then, but we participated in the evening activities before we were able to rest. The next day she found herself exhausted and she knew she needed to rest or have MS problems. She was able to sleep some, then do a few things, but she never fully recovered. She also developed a severe headache which complicated things. She hasn't had a headache that severe in months, and the pain put her in bed for the evening. The headache had let up by the next morning, but would linger for most of the next day.
It seems like all it takes is a night or two of poor sleep for her to really be affected. She didn't sleep very well in Red River so we know that didn't help her recoup. She could also tell that she needed a chiropractic adjustment. It is amazing how important it is to have a good bed to sleep on when we take trips and how important it is to stay in some kind of a routine. Poor sleep, a lack of routine and already being tired before we went on the trip made for a long first few days but she was able to enjoy the trip after some much needed rest.
We arrived at Red River Sunday afternoon and she was already tired after a full day of me preaching and then driving six hours. I could tell she needed some good rest then, but we participated in the evening activities before we were able to rest. The next day she found herself exhausted and she knew she needed to rest or have MS problems. She was able to sleep some, then do a few things, but she never fully recovered. She also developed a severe headache which complicated things. She hasn't had a headache that severe in months, and the pain put her in bed for the evening. The headache had let up by the next morning, but would linger for most of the next day.
It seems like all it takes is a night or two of poor sleep for her to really be affected. She didn't sleep very well in Red River so we know that didn't help her recoup. She could also tell that she needed a chiropractic adjustment. It is amazing how important it is to have a good bed to sleep on when we take trips and how important it is to stay in some kind of a routine. Poor sleep, a lack of routine and already being tired before we went on the trip made for a long first few days but she was able to enjoy the trip after some much needed rest.
Living In Conflict
We are moved but not moved in. The last few weeks have been crazy and the chaos has taken it's toll on my wife. The move was tough and we are in a small apartment temporarily so we are cramped and have boxes everywhere. On top of that my wifen has been offered multiple jobs but feels a lot of conflict about whether she should take the job and provide a big jump for us in pay or spend the time with our daughter. I know she feels pulled in all directions right now, and I can see the effects of the stress in her emotional state. She feels like laughing one moment and crying the next.
Life with Multiple Sclerosis can create some very difficult decisions. I know that we have had to make decisions about my wife working, having a child, participating in activities she loves and sometimes just what to do during any one of the days she is feeling tired and down. Her heart sometimes will get her in trouble because she wants to do so much more than her body will allow. She has worked herself into sickness many times through the years because of the drive she has to help people. Even activities with our daughter can overwhelm her and cause her to over work her body.
Some of these decisions have been made for us because her body will just shut down with fatigue, numbness or pain. I know that this is so frustrating for her because she wants to participate in something but can't, due to MS. Even though she was diagnosed over 20 years ago with MS, she still becomes frustrated regularly with the decisions Multiple Sclerosis forces her to make. I have watched her walk herself numb due to the desire to spend a day with our daughter or become so fatigued that she will need to sleep multiple days to regain her strength from helping others. Sometimes I will try to stop her and other times I know that it is more important for her to listen to her heart than to listen to the voice of reason concerning her MS.
I realize that my wife's MS will continue to cause conflict in our lives, but we do have choices. I run into others with MS all the time, and many of them have adjusted and are living life to the fullest and others seem defeated and depressed. Multiple Sclerosis is ruthless and very rarely takes the day off with my wife, but I am always astounded at what she can accomplish and what she is able to do. It is also amazing to watch the looks we get when we share with others that she has MS. Most people seem to expect her to have limited mobility and not be able to do much, but she amazes them when they see her living life normally. We will always live with some conflict in our lives, but it doesn't have to rule our lives.
Life with Multiple Sclerosis can create some very difficult decisions. I know that we have had to make decisions about my wife working, having a child, participating in activities she loves and sometimes just what to do during any one of the days she is feeling tired and down. Her heart sometimes will get her in trouble because she wants to do so much more than her body will allow. She has worked herself into sickness many times through the years because of the drive she has to help people. Even activities with our daughter can overwhelm her and cause her to over work her body.
Some of these decisions have been made for us because her body will just shut down with fatigue, numbness or pain. I know that this is so frustrating for her because she wants to participate in something but can't, due to MS. Even though she was diagnosed over 20 years ago with MS, she still becomes frustrated regularly with the decisions Multiple Sclerosis forces her to make. I have watched her walk herself numb due to the desire to spend a day with our daughter or become so fatigued that she will need to sleep multiple days to regain her strength from helping others. Sometimes I will try to stop her and other times I know that it is more important for her to listen to her heart than to listen to the voice of reason concerning her MS.
I realize that my wife's MS will continue to cause conflict in our lives, but we do have choices. I run into others with MS all the time, and many of them have adjusted and are living life to the fullest and others seem defeated and depressed. Multiple Sclerosis is ruthless and very rarely takes the day off with my wife, but I am always astounded at what she can accomplish and what she is able to do. It is also amazing to watch the looks we get when we share with others that she has MS. Most people seem to expect her to have limited mobility and not be able to do much, but she amazes them when they see her living life normally. We will always live with some conflict in our lives, but it doesn't have to rule our lives.
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