Wednesday, January 30, 2008

Black and Blue

A few days ago I noticed some huge bruises on my wife's legs. I asked her about them and she didn't remember where they came from or how long they had been there. This is not the first time this has happened, and it seems to happen quite often. I am not sure how Multiple Sclerosis and bruising go together, but I know that my wife bruises very easy. She can just barely bump into something and by the next day a huge black and blue bruise shows up. Most of the time she doesn't even realize that she had caused anything to happen, and then the bruise pops up. This seems to be another of those weird things that comes along with my wife's MS.

I know it frustrates her when she doesn't remember how the bruises happen. Her memory has been an issue off and on throughout the course of her MS. Sometimes she can recall things that happened years ago and sometimes she can't remember what happened five minutes ago. It especially frustrates her when she is talking to someone and forgets what she wants to say. I know this happens to everyone at some time or another, but this happens quite frequently to her. She describes it as brain fog. She says it is like she can't get her thoughts straight and focus, and then she has a hard time remembering anything. I have watched her struggle on these "brain fog days" to remember names, places or sometimes what happened a few minutes ago. We haven't found much that helps other than rest.

As far as the bruising goes, we are at a loss. We have had her checked for the normal issues that cause bruising but the tests always come back OK. Just this week my whole family had to have a test for child care licensing, and my wife's arm bruised right up where the test was administered. My daughter and I have clean arms with nothing other than a little spot where the needle was inserted. I don't know if this is a normal MS issue or not, but I do know it is normal for her. A few weeks ago she fell at a movie theater because she has a hard time seeing in dim lighting. She fell on her right knee, and it bruised up immediately. After two weeks it is finally starting to go away. We are going to keep trying to find the reason for the bruising, and I guess until we do, she will continue to be black and blue.

Tuesday, January 22, 2008

Will My Daughter Have MS?

When my wife and I were trying to decide if we wanted to have children, we started researching some of the issues we were worried about. One of those issues was whether my wife's MS would be passed on to our child. Since we have doctors and other health care professionals in our family, I started asking around about what the medical schools were teaching. It was almost funny because I couldn't seem to get a clear answer on what they thought. One of the more recent medical grads said that when he started school they were adimant that MS was not hereditary, but then they revised their medical books to say that there was a chance that it was hereditary. Does anyone really know?

My wife was one of the first women diagnosed with MS in the US, with a mom that also has MS. Her diagnosis was in 1990, so it wasn't that long ago that the medical community thought it wasn't hereditary. So, we started doing more research and trying to find out if we would be bringing a child into the world that would deal with the same issues my wife is having. After a lot of reading and studying, we really couldn't find any clear cut answers. We did find out that Multiple Sclerosis seems to go into remission when a women is pregnant, and that after the pregnancy, many of them have MS complications. We were lucky enough to be seeing Dr. Swank at the time, and he reassured us that if we would follow his protocol we would have minimal issues. He recommended that my wife get plasma after the pregnancy and she did great. Not only did she not have problems, she actually felt better and had more energy after the pregnancy than before. We have used the plasma protocol since then for surgery and other tramatic events, to try to keep her MS from causing issues.

Now we have a beautiful ten year old girl on our hands that we really don't know if she will have any issues or not. There have been some signs that point to her maybe having something down the road. Who knows if that will be MS. We do know that after live blood cell testing, our daughter has the same borrelia in her blood that my wife and I have. We're not sure what that means yet, but we are hoping that her body continues to fight it off. We also know that when we started natural treatment for the borrelia, she couldn't take the kill off of the bugs. She would ache all over and have physical pain from the medicine killing the borrelia. This is normal, but not to the extreme that she was feeling. We had to stop treatment because she couldn't handle it. Since then, we really haven't attacked the issue. I think part of reason is because we really don't know what to do.

As a father, I worry constantly that she is going to have problems. Right now she is a normal child with normal kiddo issues, but I know my wife's symptoms didn't show up until her late teens. Every once in a while we see one of the weird issues pop up that makes us wonder. For example, she has had some pain issues in her hips and legs that really can't be explained. She hasn't compained about this for awhile, but the doctors didn't know what to do with it either. Her hips would hurt so bad that we would have to rock her to sleep at night because when she laid down she couldn't handle the pain. We tried all sorts of things, but nothing seemed to help. Then it just went away. We were relieved and worried all at the same time, but we haven't had anymore major issues in a while. She is extremely active and competes in gymnastics, and her body had held up fine over the last few years. It's those moments though, where we know that something is not right, that really worries us. The other day I shared some news with her about something she was excited about, and she became so excited that she just started crying. It was way over the top, but I don't know if it is something wrong or her just being a girl. Either way, it still worries me.

We will continue to keep an eye on her, but I don't know that anyone really knows if MS is hereditary or not. The answer we hear now is that they may have a genetic disposition to the disease. To me it still sounds like they don't really know. One thing I do know for sure is that we will continue to love her and support her as she grows and matures. She is going to do some amazing things in life and I hope and pray that she never has to deal with MS. Maybe one day we will find that answer to MS, but for now, we will take it one day at a time and live life to it's fullest.

Thursday, January 17, 2008

ADD, ADHD or just MS

My wife has thought for a long time that she was ADD or ADHD. She has always had a hard time focusing on things and quieting her mind. Last night was no different. I woke up in the middle of the night to find that I was the only one in bed. My wife had tried to come to bed but couldn't get her mind to quit so that she could go to sleep. She has always complained about an over active mind that just won't quiet down and stop thinking. She finally came to bed and fell asleep about three this morning.

She is exhausted this morning so she just stayed in bed. We are very fortunate that she doesn't have to work so she will be able to sleep until she has to go and pick up our daughter. This is a fairly regular routine for us when she is having insomnia issues. We have spoken with other MS sufferers that have the same over active mind issue. I know that we have tried all sorts of things like sleeping pills, relaxing bath and massage, but when the insomnia hits, there is very little we have found to help.

She will usually end up watching a lot of TV and trying to take her mind off of things. Sometimes she will lay in bed and watch TV for hours and still not be able to go to sleep. I have noticed that she does better when she goes and lays down the instant she becomes sleepy. Otherwise, it is a battle for her to quiet her mind and drift off to sleep. If she has been overwhelmed that particular day, it is even worse. She will not be able to stop thinking about all of the things she has to get done and it drives her insane.

The ADD affects more than just her sleep. She has a very hard time focusing on certain types of tasks. She very rarily will read a book because she finds herself re-reading the same words over and over so that she actually processes them. I guess the odd thing about her lack of focus is that she has worked in an accounting office in most of her past jobs. She is very smart and capable, but she still finds it hard sometimes to stay on task because of her wandering mind. We have a good friend that tests for ADD in schools, and we asked him a few years ago about my wife's habits. He immediately commented that she has an adult form of ADD. I guess it came as no surprise to us, but we would like to know if it is connected in some way to the MS. Maybe one day we will know if it is ADD, ADHD or just MS.

Thursday, January 10, 2008

Balance of Life with Multiple Sclerosis

The last few weeks have been frustrating. My wife's MS has always affected the way we do things and we are used to changing things in our lives to accomodate the needs of her disease. We have changed jobs, moved to new places, tried different therapies and radically changed the way we live, but lately we have struggled to find balance in our lives. Her MS is not really causing any major problems right now, but it is the knowledge that it can hit at any time, to any degree, that really gets me. We really have no idea what tomorrow will bring. Lately we have been trying to figure out what our next step will be with our career and her health. I am currently helping my parents with their business and we know that we want to do something else. We have never shied away from taking control of our lives and making changes, even though we know that stress can have a negative affect on her MS.

I have been participating in MS forums lately, and I see all of the people out there that are hurting and trying to find answers. Some of these people have gone from great lives and careers, and now are on disability with little hope for a future. It really hurts me to see all of the pain and sadness, and especially the feeling of not being able to help. I have considered going back to school to study MS in some type of medical career or psychology, but I am just not sure what would help most, and what would fit my personality and our family. My wife's health has been OK lately, with small problems and fatigue, but we know that my current career is temporary while we try to piece together the next step.

So, we find our life at a constant flux with the knowledge that we will probably not be living in the same town or doing the same job a year or so from now. We are even considering home schooling so that we have more control over how much rest my wife can get in a day. Right now she is at home sleeping because she is just not getting enough rest. Trying to find a balance in life is so hard, with or without MS, but I feel more out of balance right now than I have in a long time. Along with helping my family, I am running another business and trying to help my wife with a business she has started. Sometimes it amazes me at how resilient and strong my wife is. She so badly wants to contribute financially to our family, and she isn't afraid to jump out there and try new things and push her limits, even thought she knows it could mean problems with her MS.

She started an all natural cleaning service a few years ago, but has recently taken it to the next step and is really pushing the business. She is doing great, and is actually having problems getting to all of the work because she is getting so many calls. This business has been great for her, and she does a wonderful job with her clients. With her business, and the two businesses I run, our lives are just too full. I guess it all comes back to our priorities in life, but I want to spend time with my daughter and wife, and I want to make sure my wife's health is taken care of. We will figure it out! I will decide on what the next step will be, and the MS in our lives will be there, but it will not rule the day. Sometimes I think our lives are complete chaos, but maybe that is balance for us. Maybe, just maybe we are most balanced when we are stretching and growing and living in spite of MS or any other inconveniences in life. Maybe we are in balance when we are totally out of balance, or maybe we just like to punish ourselves with so much stuff. :)

Thursday, January 3, 2008

Physical Exercise and MS

A few years ago my wife decided that she wanted to run a marathon. Her health was pretty good and she was having minimal MS issues, so we decided to try some light exercise. We met with a certified personal trainer and setup an exercise regimen that would supposedly work for her physical needs. We started with the basics including weight training and cardio on a bike and treadmill. At first, she was doing great! She was handling the weights and was even able to walk a fair distance on the treadmill.

We would leave the house in the morning and workout together for about an hour. It was interesting to watch the other people in the gym since we were the only couple working out. This went on for about 2 months and still no problems. We knew that she could only push her body so far, but it seemed she was staying within those limits because we weren't seeing any adverse effects from it. When we first started she could only walk on the treadmill. By the second month she was running for short distances and starting to see a pretty major difference in her body.

Since we worked out together, I could see that she was lifting more weight and getting stronger. What was really funny is we started seeing other couples working out at the gym, and we later found out that we had influenced a whole new group of people that were working out with their spouses. We really enjoyed it, and she kept pushing herself further and further until she was running at full speed on the treadmill and was still feeling great. It was one of those moments when life was kinda normal and her Multiple Sclerosis wasn't rearing it's ugly head. We even started looking at short races that she might be able to enter and run in.

Then it all started. One day she woke up with a tight spot on her side. It wasn't very big and it was more of an annoiance than anything else. We were a little worried about it, but we had been through the numbness and tingling with her MS before. Then it started spreading until it wrapped all around her abdomen. I have heard this described as the MS hug. The tightness incread around her abdomen until it started to hurt and become really uncomfortable. She was having problems wearing anything that put pressure on her waist and then it started to spread. Within a very short amount of time she was completely numb from her chest down and couldn't walk without help.

I tried all sorts of things to make her more comfortable, from buying high end sheets to trying to find clothes that wouldn't cause issues. At first, we thought it would pass quickly. She had only been working out for about three months and her MS seemed in remission. Her complete numbness went on for about a month before we found something that we thought would work and help. To be honest, I was worried and we even began to think through the possibility of her being in a wheelchair for the rest of her life. I came across an ND that I thought could help and little did I know that this new doctor would change the way we thought about Multiple Sclerosis.

Once we started his treatment she became better, but we learned a lot about exercising and Multiple Sclerosis through this whole process. One thing we learned is that taking care of diet is extremely important whether you are exercising or not. You can't push your body when your gut is not working properly and your body is not absorbing nutrients. We found out that my wife had a leaky gut and her body was not expelling waste properly or absorbing nutrients properly. So, she was pushing her body and it wasn't cooperating to stay up with the exercising. You can't exercise and ignore what you eat and how well you're taking care of your digestion.

Another thing we have learned is you have to hydrate and make sure your hormones are balanced. Hormone imbalance has a lot to do with how your body uses the water you take in, and my wife was very dehydrated even though she was drinking a lot of water. Even now, we can both tell when she is not drinking enough water because of certain symptoms that start to pop up. We have also tried other exercises like yoga and tai chi. She loves yoga, and her MS seems to do better when she is stretching and moving her body through the movements.

We are continuing to learn how much and to what extent she can exercise, but we would both caution anyone with MS when it comes to physical exertion. Some MS patients seem to do OK with exercise but the majority we have met can't exercise much because of fatigue and how it affects them. I guess our advice would be to take it slow, rest a lot, eat great and drink plenty of water. I know that it frustrates my wife that she can't run like she did as a teenager, but I also know that she is thankful that she can still walk, hug our daughter and participate in other activities. I know my wife, and she will continue to exercise but she will take the time to listen to her body and continue to learn as she goes. She still wants to run that marathon, and maybe one day we will do it together.