Chatted with people who have been on Tysabri for awhile and they all said that they noticed improvements after their 3rd infusion. Well, next Friday will be my 3rd one, so I can't wait to see what changes take effect for me. Everybody is affected differently by MS, so the benefits are going to be different too.
I dream about giving up the wheelchair and being able to drive again.
Tuesday, May 17, 2011
Sunday, May 8, 2011
Mom Teaches
With today being Mother's Day I really tried to think about moms. I'm a mom who feels ordinary, unlike my super mom.
Without my mom I don't think I would be able to deal with my MS. She is a rock with a brain. She seems to know how to pick the doctor's brain. I am trying to learn how she does it, but I do have a long way to go. She even knew how to research new treatments that are still in their trial stages, but unfortunately I am not a candidate for the trials, so she asked the doctor to get a little more aggressive with my care. I would have just accepted what was said, but no not my mom, with tears in her throat she demanded that they help me. The doctor got me a referral to more aggressive doctor at a MS clinic and that is where I am at right now. Hope the treatment that she has chosen will make a big difference in my life.
My mom is trying to teach me to be more active and aggressive in my health. It is a hard lesson, but I am trying to take good notes. I still take her with me to my visits, because I don't always think as fast as her on my feet. My mom only has her GED that she received in her 50's and she is much smarter than some people with a Bachelor degree. I thank God for giving me my mom every day.
Thanks mom for being there to hold my hand and lead me. Your the greatest!!!!!
Without my mom I don't think I would be able to deal with my MS. She is a rock with a brain. She seems to know how to pick the doctor's brain. I am trying to learn how she does it, but I do have a long way to go. She even knew how to research new treatments that are still in their trial stages, but unfortunately I am not a candidate for the trials, so she asked the doctor to get a little more aggressive with my care. I would have just accepted what was said, but no not my mom, with tears in her throat she demanded that they help me. The doctor got me a referral to more aggressive doctor at a MS clinic and that is where I am at right now. Hope the treatment that she has chosen will make a big difference in my life.
My mom is trying to teach me to be more active and aggressive in my health. It is a hard lesson, but I am trying to take good notes. I still take her with me to my visits, because I don't always think as fast as her on my feet. My mom only has her GED that she received in her 50's and she is much smarter than some people with a Bachelor degree. I thank God for giving me my mom every day.
Thanks mom for being there to hold my hand and lead me. Your the greatest!!!!!
Friday, May 6, 2011
A Burden
My eyes start to swell up as I write this one.
While our children are growing we change diapers, feed them, dress them and when they get older we become chauffeurs and they are not a burden, we are glad to be there to hold their hands, offer them comforts wherever we can.
With this all said, why do they have to make me feel like a burden? I do as much as I can for myself as well as for them. I have to use a wheelchair to get around and I know it is hard to handle without ramps and lifts. When we need to go somewhere that requires me the need, I don't need to hear the complaints. I hate the wheelchair, but I couldn't do things without it so I try to embrace it until my body heals with the new drug. The older one never wants to get me a scooter at the store, which is easier than lifting the wheelchair. I don't get it, I guess I what the teens call clueless. Now the middle child is more than glad to get the scooter, he thinks they are very cool.
I already feel like the burden that I don't want to be, I wish they would look at the whole picture and then maybe they wouldn't be clueless. I am too young to be a burden to my children and the shouldn't be caregivers at their ages, but it could be a good life learning lesson.
It is time to wipe the eyes dry and start supper.
While our children are growing we change diapers, feed them, dress them and when they get older we become chauffeurs and they are not a burden, we are glad to be there to hold their hands, offer them comforts wherever we can.
With this all said, why do they have to make me feel like a burden? I do as much as I can for myself as well as for them. I have to use a wheelchair to get around and I know it is hard to handle without ramps and lifts. When we need to go somewhere that requires me the need, I don't need to hear the complaints. I hate the wheelchair, but I couldn't do things without it so I try to embrace it until my body heals with the new drug. The older one never wants to get me a scooter at the store, which is easier than lifting the wheelchair. I don't get it, I guess I what the teens call clueless. Now the middle child is more than glad to get the scooter, he thinks they are very cool.
I already feel like the burden that I don't want to be, I wish they would look at the whole picture and then maybe they wouldn't be clueless. I am too young to be a burden to my children and the shouldn't be caregivers at their ages, but it could be a good life learning lesson.
It is time to wipe the eyes dry and start supper.
Wednesday, May 4, 2011
How can Tysabri be a benefit
After Tysabri was suggested, I had alot of questions. Scared about the fatal brain infection that I could get and I just couldn't understand how Tysabri could work better.
First I was told that developing the brain infection was very slim, but they watch anyways for signs of it, so they can prevent the problem.
Like other MS treatments Tysabri works the same just more intense. That is why it is given once every 4 weeks. Ok, so what? How does this help me and my body? A nurse explained that the body will repair itself, if allowed the time to do it. Like, when someone donates a part of their liver, it will grow back in about 2 years. Nerves can grow back too. With MS, your nerves are exposed and damaged and they never get a break from the immune system to do the repairing. The Tysabri is tougher and keeps the immune system from attacking so that the body can begin a repair process. Many people have said that many of their problems from MS have gone away and they are able to walk again and many other wonderful things.
I have had two treatments so far and I can't wait to see what repairs my body has been able accomplish. This is getting a little exciting, since some people said their good fortune started showing after 3rd treatment. Hope so for me, looking forward to enjoying this summer.
First I was told that developing the brain infection was very slim, but they watch anyways for signs of it, so they can prevent the problem.
Like other MS treatments Tysabri works the same just more intense. That is why it is given once every 4 weeks. Ok, so what? How does this help me and my body? A nurse explained that the body will repair itself, if allowed the time to do it. Like, when someone donates a part of their liver, it will grow back in about 2 years. Nerves can grow back too. With MS, your nerves are exposed and damaged and they never get a break from the immune system to do the repairing. The Tysabri is tougher and keeps the immune system from attacking so that the body can begin a repair process. Many people have said that many of their problems from MS have gone away and they are able to walk again and many other wonderful things.
I have had two treatments so far and I can't wait to see what repairs my body has been able accomplish. This is getting a little exciting, since some people said their good fortune started showing after 3rd treatment. Hope so for me, looking forward to enjoying this summer.
Monday, May 2, 2011
Kids Dealing with MS
I have 3 kids. 1 girl and 2 boys, 16, 13, and 5. They have done ok with me having MS, the older kids remember when mom could do it all, so sometimes they give me a hard way to go. The youngest one has only known mom to be sick, so the little guy likes to help or do for himself, which can be scary.Sometimes they make me feel like I am just a burden them, but when I had my heart attack, it scared them so much that they behaved better with me. I feel bad for them that I can't go with them like I use to. I miss being at practices, scout meetings, school things, etc. I use to be the chauffer and I loved it! The ex-husband tries, but it has never been his cup tea. At least he drives me around and goes shopping with me, which is not one of his favorite things, but he is becoming a pretty good sport.
I just don't know how to get through to the kids, to be more co-operative. It is hard enough, but they sure can make it even harder on me. They don't understand that I know it is difficult on them having a sick mom, who is unable to be like the other moms. They don't realize that is very hard on me, especially when I know I use to do those things easily.
I just don't know how to get through to the kids, to be more co-operative. It is hard enough, but they sure can make it even harder on me. They don't understand that I know it is difficult on them having a sick mom, who is unable to be like the other moms. They don't realize that is very hard on me, especially when I know I use to do those things easily.
Finding whats wrong
Hello to everyone. I never have blogged before, but I do like to write so I thought I would give this a try.
I have been dealing with MS since 2003 and now I am trying a new kind of treatment. I thought it would be a great way to follow how I was doing by blogging.
I guess you would like to get on the same page as me, so I will give you my history first.
Late in 2002 I started feeling bad. I couldn't put a finger on what was wrong. I told the doctor that my head was telling me that something wasn't right. She ran a few tests and couldn't find anything, so she sent me to a Neurologist. I went with some old MRI reports and he said that they had suspected MS in 1999. I told him they said I had had a mini stroke and was treated accordingly. He started running tests and each one kept leading towards MS. I finally had a lumbar puncture to confirm the MS.
I began treatment with Rebif injections to slow the progression down in 2003. I developed some depression from having too much on my plate, so they let me go off the Rebif for a couple of months, but then I got pregnant with third child, which was not in the plan, but a welcome gift to the family.
Pregnancy went well and a year later a new neurologist put me on Copaxone. The MS progressed and the doctor wasn't doing anything about it. He said I could try Tysabri, but it could cause a fatal brain infection. I decided to find a new doctor and she was able to treat my symptoms, and put me on Betaseran, but the disease worsened. She was not aggressive enough to help me so she sent me to another doctor that would have access to trial studies and took more aggressive approaches without getting the scalpel out.
This Neurologist out of a MS clinic, explained the Tysabri and made it sound a little less deadly and that is what I am doing now. This done by IV once every 4 weeks. I will blog about the treatment as I go. I have just had my second IV, so not much to say yet.
Lessons I have learned so far, get copies of all your tests to make sure you are informed of the findings and if you start feeling your doctor isn't doing his job, look for new one and don't wait til it is too late. Look for follow up with me. I hope to help anyone who is going trough what I am.
I have been dealing with MS since 2003 and now I am trying a new kind of treatment. I thought it would be a great way to follow how I was doing by blogging.
I guess you would like to get on the same page as me, so I will give you my history first.
Late in 2002 I started feeling bad. I couldn't put a finger on what was wrong. I told the doctor that my head was telling me that something wasn't right. She ran a few tests and couldn't find anything, so she sent me to a Neurologist. I went with some old MRI reports and he said that they had suspected MS in 1999. I told him they said I had had a mini stroke and was treated accordingly. He started running tests and each one kept leading towards MS. I finally had a lumbar puncture to confirm the MS.
I began treatment with Rebif injections to slow the progression down in 2003. I developed some depression from having too much on my plate, so they let me go off the Rebif for a couple of months, but then I got pregnant with third child, which was not in the plan, but a welcome gift to the family.
Pregnancy went well and a year later a new neurologist put me on Copaxone. The MS progressed and the doctor wasn't doing anything about it. He said I could try Tysabri, but it could cause a fatal brain infection. I decided to find a new doctor and she was able to treat my symptoms, and put me on Betaseran, but the disease worsened. She was not aggressive enough to help me so she sent me to another doctor that would have access to trial studies and took more aggressive approaches without getting the scalpel out.
This Neurologist out of a MS clinic, explained the Tysabri and made it sound a little less deadly and that is what I am doing now. This done by IV once every 4 weeks. I will blog about the treatment as I go. I have just had my second IV, so not much to say yet.
Lessons I have learned so far, get copies of all your tests to make sure you are informed of the findings and if you start feeling your doctor isn't doing his job, look for new one and don't wait til it is too late. Look for follow up with me. I hope to help anyone who is going trough what I am.
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