Wednesday, July 20, 2011
New Study on Cost Effectiveness of MS Therapies : National MS Society
The Disease Modifying Drugs for MS are so expensive. I am on Copaxone and before I used the VA, my monthly copay with insurance was $250. It was outrageous. I can't see how anyone affords this. This is just one of my medications. Here is an article that talks about the cost and effectiveness:
New Study on Cost Effectiveness of MS Therapies : National MS Society
Sunday, July 17, 2011
Hope Endures
Well, I kind of liked the video I posted last week, so I thought I would do another one today.
This one shows that the right side of my face is not working as it used to. The muscle symmetry is missing. It is weird how the nerves cross at the base of the head. So like me, if you have problems using your left leg and left arm, then it is actually the right side of the brain that is most affected.
This is evident by the right side of the face being affected. Whenever I have any relapses, my right vision is affected along with muscle control on the right side of my face. My left leg starts to drag and my left foot drop becomes more profound. My left hand loses coordination to the point I can't even tap my fingers together rythmically.
If you close your eyes, hold out your arms, you should be able to touch your nose with each hand with no problem. I can no longer do that with my left side. Proprioception is the bodies ability to know where any anatomical part of the body is as well as sensations.
I made this video of me singing (not great), but if you notice, the right side of my face does not react as the left side does. It used to have symmetry, so this is not my normal. Well, I guess it is my new normal. Anyway, hope it brings you a little joy, probably most likely through laughter :o)
This one shows that the right side of my face is not working as it used to. The muscle symmetry is missing. It is weird how the nerves cross at the base of the head. So like me, if you have problems using your left leg and left arm, then it is actually the right side of the brain that is most affected.
This is evident by the right side of the face being affected. Whenever I have any relapses, my right vision is affected along with muscle control on the right side of my face. My left leg starts to drag and my left foot drop becomes more profound. My left hand loses coordination to the point I can't even tap my fingers together rythmically.
If you close your eyes, hold out your arms, you should be able to touch your nose with each hand with no problem. I can no longer do that with my left side. Proprioception is the bodies ability to know where any anatomical part of the body is as well as sensations.
I made this video of me singing (not great), but if you notice, the right side of my face does not react as the left side does. It used to have symmetry, so this is not my normal. Well, I guess it is my new normal. Anyway, hope it brings you a little joy, probably most likely through laughter :o)
Tuesday, June 28, 2011
Letter to God
Dear Heavenly Father,
I wanted to start by thanking You for all the miracles in this world that we often fail to see. I try to remember that sometimes we are blind to all the wonders that You have surrounded us with. I ask that you help open up my eyes so that I don't lose sight of everything that You have given us, as well as the greatest sacrifice You gave through your son Jesus.
I wanted to ask you to give knowledge, wisdom and insight to the medical providers who take care of those people with Multiple Sclerosis. Help them find a cure for this ravaging disease. Help them understand that each person with this disease is just that, a person. Help them see us for who we are and not the label of the disease. Help them treat us as such.
There are so many people who are struggling with coping with MS, I ask that you give each and everyone of them, including myself, the perseverance we to overcome the obstacles that come in our way. I ask that you give the caregivers, loved ones, mothers, fathers, sisters & brothers the patience and understanding to help us through this.
I can not imagine all the struggles that you hear about on any given moment of any given day. Today I just wanted the world to know that I am asking you for all of the above as well as help in understanding how I am going to help others when there are times that I can't even help myself. Please give me guidance. Please help me heal both physically, spiritually and emotionally from what MS is doing to me. Please heal others who are suffering as well.
I love you.
Lisa
I wanted to start by thanking You for all the miracles in this world that we often fail to see. I try to remember that sometimes we are blind to all the wonders that You have surrounded us with. I ask that you help open up my eyes so that I don't lose sight of everything that You have given us, as well as the greatest sacrifice You gave through your son Jesus.
I wanted to ask you to give knowledge, wisdom and insight to the medical providers who take care of those people with Multiple Sclerosis. Help them find a cure for this ravaging disease. Help them understand that each person with this disease is just that, a person. Help them see us for who we are and not the label of the disease. Help them treat us as such.
There are so many people who are struggling with coping with MS, I ask that you give each and everyone of them, including myself, the perseverance we to overcome the obstacles that come in our way. I ask that you give the caregivers, loved ones, mothers, fathers, sisters & brothers the patience and understanding to help us through this.
I can not imagine all the struggles that you hear about on any given moment of any given day. Today I just wanted the world to know that I am asking you for all of the above as well as help in understanding how I am going to help others when there are times that I can't even help myself. Please give me guidance. Please help me heal both physically, spiritually and emotionally from what MS is doing to me. Please heal others who are suffering as well.
I love you.
Lisa
Wednesday, June 8, 2011
Pain
Pain has been such an issue lately. I hurt from head to toe. I was or am weaning myself off of the amytriptilline, which I take for pain control, but I hurt so bad. It's weird how this pain is so different than the pain you experience when you stub your toe or a paper cut on your finger. My pain is aching, flu-like pain. Also just my husbands touch on my arm sends off intense pain signals. I don't know what to do.
I think I may increase my dose again, but I am nervous. I think this medicine might be the cause of my "seizures" that I was diagnosed with last month. I have to choose from the lesser of two evils I suppose.
Today I went outside and tended to my flowers. A few years ago my flower garden would have been so full of beautiful blooms. This years garden looks very sparse, sad and pathetic, but I need to keep whatever I can going. After the sunset, I pulled a few weeds, and now I am completely wiped out. My pain is everywhere now and so intense.
Maybe, one day I will have a beautiful garden again.
http://www.youtube.com/user/pianki?blend=1&ob=5
I think I may increase my dose again, but I am nervous. I think this medicine might be the cause of my "seizures" that I was diagnosed with last month. I have to choose from the lesser of two evils I suppose.
Today I went outside and tended to my flowers. A few years ago my flower garden would have been so full of beautiful blooms. This years garden looks very sparse, sad and pathetic, but I need to keep whatever I can going. After the sunset, I pulled a few weeds, and now I am completely wiped out. My pain is everywhere now and so intense.
Maybe, one day I will have a beautiful garden again.
http://www.youtube.com/user/pianki?blend=1&ob=5
Tuesday, May 31, 2011
Avoidance
MIA for a while. I have been avoiding my blog because I don't feel particularly inspirational at this point. Having a bad few months and can't seem to climb back out of it fast enough. 2 day stint in the hospital where I was diagnosed as having seizures on top of everything. They started me on a seizure medication Keppra where I was supposed to take 500mg twice a day and then after 2 weeks move up to 1000mg twice a day. Well I took it for a week and a half. Let me list the side effects and you can deduce why I stopped: Weakness, dizziness, drowsiness, loss of balance...... Everything I already have plus 10x worse. I could barely walk a few feet without losing the ability to lift my legs up very well. It sucked. Haven't told my doctor this yet. Not looking forward to that.
Where to find inspiration. I am at a loss. I seem to be knocked down a lot lately, but never knocked completely out. I get back up, but with a lot of help. My husband is the love of my life. He stands by me. He hugs me so tight through my tearful sessions. He opens doors, holds me up, goes out of his way to make sure I have everything I need. I could not be any more blessed. Loving husband, wonderful family and kids, friends whom I may not see very often, but I know they love me as I love them. The good Lord whose faith in me never waivers even when mine might falter a little. Well I guess there is the inspiration I was looking for. Sometimes I try to look so far ahead that I fail to see what is already here.
Still it is so hard not to ask why me? I am not old. I want to be able to do everything like I could before becoming "sick". I love summer, but don't get to enjoy it. Heat makes all the neurons go hay-wire and can't function. I want to walk around the neighborhood, but can't. I want to hike in the mountains, but I can't. I want to be a floor nurse, but now am confined to an office (grateful to be able to work, even if it's only for a few hours). I know that I am supposed to focus on what I can do, but it's hard not to miss what you could do. I want this all to be a bad dream. Somebody pinch me and wake me up. I don't like this. I actually hate this. Cruel cruel disease.
Well that put a damper on things now didn't it. What's that saying? Hope springs eternal.
http://www.youtube.com/watch?v=1CSVqHcdhXQ
Where to find inspiration. I am at a loss. I seem to be knocked down a lot lately, but never knocked completely out. I get back up, but with a lot of help. My husband is the love of my life. He stands by me. He hugs me so tight through my tearful sessions. He opens doors, holds me up, goes out of his way to make sure I have everything I need. I could not be any more blessed. Loving husband, wonderful family and kids, friends whom I may not see very often, but I know they love me as I love them. The good Lord whose faith in me never waivers even when mine might falter a little. Well I guess there is the inspiration I was looking for. Sometimes I try to look so far ahead that I fail to see what is already here.
Still it is so hard not to ask why me? I am not old. I want to be able to do everything like I could before becoming "sick". I love summer, but don't get to enjoy it. Heat makes all the neurons go hay-wire and can't function. I want to walk around the neighborhood, but can't. I want to hike in the mountains, but I can't. I want to be a floor nurse, but now am confined to an office (grateful to be able to work, even if it's only for a few hours). I know that I am supposed to focus on what I can do, but it's hard not to miss what you could do. I want this all to be a bad dream. Somebody pinch me and wake me up. I don't like this. I actually hate this. Cruel cruel disease.
Well that put a damper on things now didn't it. What's that saying? Hope springs eternal.
http://www.youtube.com/watch?v=1CSVqHcdhXQ
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