Lent. Stop. Look. Listen. (from the sermon at church today)
In the midst of change, it's good to do this. And what better time than during Lent.
Glimpses from the past week...
"Beth, as you know I am a physical therapist. I just have to say that I have never seen a gait quite like yours." (I was smiling - this is an interesting observation by someone who doesn't know me). "Did you have an accident?" "No. Guess again." (still smiling) "Cerebral Palsy?" "No. You have to guess one more time before I tell you." (still smiling) (look of being totally perplexed) "Were you born with it?" "No... I have MS." "But... you are so young." "Yes, but I've had this for over 20 years." "But you were young to get it." (my thought: yup. It's now over half my life. It is what it is. There's no choice.)
"I'm so glad you're here."
"He's really glad you're here. He couldn't wait for you to get here."
(I'm excited to be there. It feels like I spent a year looking, and in the end, I found something that seems perfect.)
Me: "Hi." (to someone who used to work with me, years ago, when he was a supervisor moving up quickly and I was getting to be well-known as a programmer/analyst) "Hi Beth." Hug.
"Beth, you're coming back tomorrow, right?" (the person smiles) Of course I am.
Now let's see. At the old place we had a place I could walk and do loops. Now there is a large open space, but I can make this work. It's an out and back approach, with a kind of mini-loop in the middle of it. This works for walking, but someone called what I do "laps," so I will go with that. There is a place to walk.
(Inserting Ampyra commercial here) There was a meeting at a place where I have been previously. But this time, in walking into the meeting from the parking garage, I didn't get tired. I didn't get tired going back to my car either. (Some people call my car a van, but I'm still in denial - I would rather drive a car) Going to another meeting at a different location, I didn't get tired either. I've been doing 20 minute walks without stopping whenever there's a day I can do that. It's making a difference.
There's a whole lot more, but these are just glimpses, and this blog is about MS and faith, not so much on employment. But a new job and MS interact, much as I would like to separate them, take this MS thing, and set it on a shelf somewhere.
Life is good. This was a good past week.
God didn't get any anger from me this week. Well, not totally true. At first I wasn't walking enough which caused an evening of 3 hours of leg spasms where I tried to explain that I couldn't walk as much these past couple days, and could God perhaps cut me a break, given it was Ash Wednesday? I promise, God, I will walk more, on Thur and Fri (ha - as if God sent the spasms - but in these moments/3 hours - I think I should be able to make some kind of deal).
Stop. Look. Listen.
I'm stopped. I have looked. I'm listening to a song my husband has on the radio - I don't like country music at all and he has country music on. But this is a song I know and like - it's called "I Hope You Dance."
So I'll end this one with the lyrics. It's about always looking for the amazing, never taking things for granted, looking for open doors where doors seem closed, never giving up, and always, of course, dancing.
Peace.
May You Dance:
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some Hellbent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance
I hope you dance
Sunday, February 17, 2013
Sunday, February 10, 2013
20 years
"It's been 20 years?" I asked my mom. "Well, yes."
I had forgotten. It has been 20 years. It's been 23 years since I woke up with tingly legs, marking the beginning of this thing that, on Feb 11, got a name called MS.
"I have good news and bad news for you. The good news is... The bad news is we have found spots on your spine which indicate you have Multiple Sclerosis."
"Should I just lie down here on the floor and die then?"
(Look of shock) "No.... there is someone who works in the lab here who has MS... there is someone getting their Masters who has MS."
(me) "Mom, I think I the type of MS means I have will not be the easiest path, but I won't have the hardest path. I think MS will always affect me and be a big part of my life. But I think my life will continue, and I will always be 'Beth.' I won't lose my identity."
Life is like a river. It changes course, sometimes moves more quickly than other times, sometimes gets stuck on rocks or bunches of grass. But it continues. Sometimes those grassy spots seem to never end. If we break through the grassy spots, we may find a fast flowing river again. With MS, there may be more rocks in the way, more grassy spots, and perhaps a slower river. But one never knows when that river may pick up again, and so, I've always looked for the breakthroughs, and have found some.
My doctor was right, and I didn't just lie on the floor and die. I got a job. I went back to school. I got married. I am a mom.
There's been a Facebook "thing" lately where someone gives you an age and you answer questions based on that age, and the same questions today. I was given 19, very close to age 20, when I was diagnosed with MS. It's interesting to fill this out, thinking of 20 years ago.
On Feb 11, 1993,
I lived in: a small and dark dormroom at Kenyon College in Ohio
I drove: my friend Kelley's car to many dr appts in Columbus, an hour away from Kenyon
I worked at: N/A
I dated/married: too busy going to the dr for these things
I feared: I don't know. I was in a cloud.
I wanted to be: alive.
Now that it's (almost) Feb 11, 2013
I live in: Colorado, which has always been home
I drive: do I have to say? I do drive!
I work at: I will be starting a new job on Feb 11 at an organization called CIVHC.
I am dating/married to: Dave
I fear: depends on the day, hour, minute, etc.
I want to be: happy, successful in all I do, and someone who never gives up.
So, 20 years ago on Feb 11 I went through a day that was horrible, filled with tests which led to "you have MS." This Feb 11 I start a new job. It's quite a different kind of day. I find it somewhat strange that it's almost an opposite type of day.
Throughout these 20 years, I have looked to God, and considered "suffering leads to endurance, which leads to character, which leads to hope, and hope does not disappoint us." I find myself at all stages of this continuum, which wasn't written as Beth's stages of life, but I have used it that way. As a sidenote, I don't like the word "suffering" in the context of MS. I live with MS. Since it's my blog, I would like to substitute "living with MS" in place of "suffering." Blogs can be so much fun!
I have said "Why, God?" "God, seriously, are you kidding? This is too much."
I have actually screamed (alone): "God, I cannot take this anymore. How long must this continue?!"
"God, I know people say God never gives you more than you can handle, but I have more, I really do."
"Thank you, God."
"God, this is a gift."
"God, could this be true? This is simply wonderful."
And here I am, 20 years later, amazed.
It's been quite a journey, God. I am amazed, thankful, and happy."
Peace.
I had forgotten. It has been 20 years. It's been 23 years since I woke up with tingly legs, marking the beginning of this thing that, on Feb 11, got a name called MS.
"I have good news and bad news for you. The good news is... The bad news is we have found spots on your spine which indicate you have Multiple Sclerosis."
"Should I just lie down here on the floor and die then?"
(Look of shock) "No.... there is someone who works in the lab here who has MS... there is someone getting their Masters who has MS."
(me) "Mom, I think I the type of MS means I have will not be the easiest path, but I won't have the hardest path. I think MS will always affect me and be a big part of my life. But I think my life will continue, and I will always be 'Beth.' I won't lose my identity."
Life is like a river. It changes course, sometimes moves more quickly than other times, sometimes gets stuck on rocks or bunches of grass. But it continues. Sometimes those grassy spots seem to never end. If we break through the grassy spots, we may find a fast flowing river again. With MS, there may be more rocks in the way, more grassy spots, and perhaps a slower river. But one never knows when that river may pick up again, and so, I've always looked for the breakthroughs, and have found some.
My doctor was right, and I didn't just lie on the floor and die. I got a job. I went back to school. I got married. I am a mom.
There's been a Facebook "thing" lately where someone gives you an age and you answer questions based on that age, and the same questions today. I was given 19, very close to age 20, when I was diagnosed with MS. It's interesting to fill this out, thinking of 20 years ago.
On Feb 11, 1993,
I lived in: a small and dark dormroom at Kenyon College in Ohio
I drove: my friend Kelley's car to many dr appts in Columbus, an hour away from Kenyon
I worked at: N/A
I dated/married: too busy going to the dr for these things
I feared: I don't know. I was in a cloud.
I wanted to be: alive.
Now that it's (almost) Feb 11, 2013
I live in: Colorado, which has always been home
I drive: do I have to say? I do drive!
I work at: I will be starting a new job on Feb 11 at an organization called CIVHC.
I am dating/married to: Dave
I fear: depends on the day, hour, minute, etc.
I want to be: happy, successful in all I do, and someone who never gives up.
So, 20 years ago on Feb 11 I went through a day that was horrible, filled with tests which led to "you have MS." This Feb 11 I start a new job. It's quite a different kind of day. I find it somewhat strange that it's almost an opposite type of day.
Throughout these 20 years, I have looked to God, and considered "suffering leads to endurance, which leads to character, which leads to hope, and hope does not disappoint us." I find myself at all stages of this continuum, which wasn't written as Beth's stages of life, but I have used it that way. As a sidenote, I don't like the word "suffering" in the context of MS. I live with MS. Since it's my blog, I would like to substitute "living with MS" in place of "suffering." Blogs can be so much fun!
I have said "Why, God?" "God, seriously, are you kidding? This is too much."
I have actually screamed (alone): "God, I cannot take this anymore. How long must this continue?!"
"God, I know people say God never gives you more than you can handle, but I have more, I really do."
"Thank you, God."
"God, this is a gift."
"God, could this be true? This is simply wonderful."
And here I am, 20 years later, amazed.
It's been quite a journey, God. I am amazed, thankful, and happy."
Peace.
Friday, February 8, 2013
A chance
BACKGROUND:
I've been on Ampyra for over 2 and a half years. If you look back at many of my previous posts, they may well qualify for an Ampyra commercial. Ampyra is thought to help the walking ability for one in three people with MS. It went through extensive clinical trials, in part to determine the correct dosage. It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks. That was the trial. Drug approved by FDA. The end.
25 percent doesn't sound like a lot. But reconsider... this was for the entire sample of people. We're hearing that Ampyra works for 1 in 3 people. Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%... over the course of 12 weeks.
What happens after 12 weeks to those people? MS is very individualized, so every person is different. For me, I could only walk about 25-50 feet before Ampyra. After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!). This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.
But what was not tested? What was not tested was everything outside of leg muscles. If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well. And for me, this is true, but an actual clinical trial can only test a limited number of things. So I have stronger core muscles which is very important. I have stronger hand muscles so I can now write. If you think of any muscle, it's stronger. Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once. My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally. I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy. There is something there. For me, for now, the course of MS has been reversed some... well, 75%... I am 75% better than I was, but I still have a long way to go.
It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different). I've never had brain lesions. I had two spots of lesions on my spine. One of those spots is gone. The other lesion area is small. Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions. Those broken connections are where Ampyra works.
I've been on Provigil for longer than that... I don't know how long. Provigil has been studied in MS with mixed results. It is thought to improve energy in people with MS. For me, it has done just that. I believe that the combination of Provigil and Ampyra may be part of why I am doing very well. When I forgot to take Provigil one day, I couldn't stay awake. Other bad things happen if I don't take it for a couple days. Provigil recently went generic so it is a lot cheaper now.
PROBLEM:
Some insurance companies cover Ampyra. Some do not. Some insurance companies cover Provigil for MS. Some do not. If you have to change insurance companies, it can be, well, I am speechless. One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.
SIDENOTES:
It's fascinating... the combo of 2 drugs has, I believe, altered my life completely. I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage. I'm all for mandating coverage for contraceptives, but what about other things?
And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies. So that argument doesn't hold.
A CHANCE:
I believe that everyone deserves a chance. There are other insurance companies that do not cover Ampyra. So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit. And it's a lot less expensive than many other MS drugs.
I was getting my wheelchair fixed the other day. As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair. I wondered what her story was. What seemed clear to me is that she was extremely obese and was currently in a power chair. The questions she asked led me to believe that she likes to stay in the chair as much as she can. She hasn't used a manual wheelchair for a long time. She is on Medicaid. Her current power chair was $15k. Her new chair will cost $22k and I am assuming Medicaid will pay for this. She was on oxygen. She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.
What was her story? How did she get to this point?
As I was about to leave, I heard her say, "I have MS."
Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?
I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it? What if she had been someone like me, and it would have worked? Wouldn't quality of life have been a lot better?
I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle? If it doesn't work, people stop taking it, because the side effects are not fun.
I'll figure out a way for everything to work for me. But I'm thinking... I got a chance.
Doesn't everyone deserve a chance? How can we get people a chance? How do we assure that, if they move between insurance companies, the good things remain intact?
If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this? What about quality of life? Are we considering that?
Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?
I believe they do.
So now what?
Peace.
I've been on Ampyra for over 2 and a half years. If you look back at many of my previous posts, they may well qualify for an Ampyra commercial. Ampyra is thought to help the walking ability for one in three people with MS. It went through extensive clinical trials, in part to determine the correct dosage. It was shown, basically, to increase the speed of walking on average by 25 percent over the course of 12 weeks. That was the trial. Drug approved by FDA. The end.
25 percent doesn't sound like a lot. But reconsider... this was for the entire sample of people. We're hearing that Ampyra works for 1 in 3 people. Thinking generally, if that is the case for Ampyra, then if you do some pretty basic and not FDA-approved math, you're really finding that, for the people for whom Ampyra works, it improves their walking speed by 75%... over the course of 12 weeks.
What happens after 12 weeks to those people? MS is very individualized, so every person is different. For me, I could only walk about 25-50 feet before Ampyra. After 4 months, it took me about an hour to make it around a track (which is much further than 25-50 feet!). This fall, so about 2 years after starting Ampyra, I was under 20 minutes around a track.
But what was not tested? What was not tested was everything outside of leg muscles. If Ampyra fixes connections to make leg muscles work better, then it makes sense that Ampyra will help other muscles be stronger as well. And for me, this is true, but an actual clinical trial can only test a limited number of things. So I have stronger core muscles which is very important. I have stronger hand muscles so I can now write. If you think of any muscle, it's stronger. Beyond that, unexplained, is I haven't had an MS exaccerbation during that time, and I've only been sick once. My mom remembers when I would have exaccerbations - the fatigue, the falling, and how tough they were mentally. I don't tend to get sick, but since Ampyra, I have had a lot of stress at times and still managed to stay healthy. There is something there. For me, for now, the course of MS has been reversed some... well, 75%... I am 75% better than I was, but I still have a long way to go.
It's probably because, as I've said previously, my MS is different (everyone with MS will tell you the same thing - theirs is different). I've never had brain lesions. I had two spots of lesions on my spine. One of those spots is gone. The other lesion area is small. Yet I have so much trouble walking - it must be the broken connections that occur on conducting nerves, as a results of the lesions. Those broken connections are where Ampyra works.
I've been on Provigil for longer than that... I don't know how long. Provigil has been studied in MS with mixed results. It is thought to improve energy in people with MS. For me, it has done just that. I believe that the combination of Provigil and Ampyra may be part of why I am doing very well. When I forgot to take Provigil one day, I couldn't stay awake. Other bad things happen if I don't take it for a couple days. Provigil recently went generic so it is a lot cheaper now.
PROBLEM:
Some insurance companies cover Ampyra. Some do not. Some insurance companies cover Provigil for MS. Some do not. If you have to change insurance companies, it can be, well, I am speechless. One company may cover Ampyra for MS, the other may cover Provigil for MS, and neither may cover both.
SIDENOTES:
It's fascinating... the combo of 2 drugs has, I believe, altered my life completely. I'll find a way for it to work, to get both drugs, but when someone has been two drugs for so long, it's hard to imagine that those drugs wouldn't be covered (maintained), or that there wouldn't be some kind of mandate about coverage. I'm all for mandating coverage for contraceptives, but what about other things?
And if we're talking medical necessity, I can think of a bunch of drugs that are not medically necessary, but that are covered by both insurance companies. So that argument doesn't hold.
A CHANCE:
I believe that everyone deserves a chance. There are other insurance companies that do not cover Ampyra. So other people don't get the chance to try it - even with my current insurance company, my doctor had to push a bit. And it's a lot less expensive than many other MS drugs.
I was getting my wheelchair fixed the other day. As I was waiting (for 45 minutes), a woman was in the store talking about her power wheelchair. I wondered what her story was. What seemed clear to me is that she was extremely obese and was currently in a power chair. The questions she asked led me to believe that she likes to stay in the chair as much as she can. She hasn't used a manual wheelchair for a long time. She is on Medicaid. Her current power chair was $15k. Her new chair will cost $22k and I am assuming Medicaid will pay for this. She was on oxygen. She had 2 hips already replaced and needed another one, but she is not healthy enough to get one.
What was her story? How did she get to this point?
As I was about to leave, I heard her say, "I have MS."
Before she got to where she is now, assuming her obesity came after MS, what if she had Ampyra?
I know that may be a long shot for improving where she is now, but what if she wanted it and insurance hadn't covered it? What if she had been someone like me, and it would have worked? Wouldn't quality of life have been a lot better?
I know I'm inserting a lot of assumptions here, but doesn't everyone deserve a chance to be the one in three where Ampyra is a miracle? If it doesn't work, people stop taking it, because the side effects are not fun.
I'll figure out a way for everything to work for me. But I'm thinking... I got a chance.
Doesn't everyone deserve a chance? How can we get people a chance? How do we assure that, if they move between insurance companies, the good things remain intact?
If we cover other drugs that do far less, if we mandate coverage for certain drugs, free preventive screenings, etc., then what about this? What about quality of life? Are we considering that?
Doesn't everyone deserve a chance at increased quality of life, a chance at a life turned completely upside down, flipped, turned this way and that, but in a completely unexpected, miraculous, amazingly good way?
I believe they do.
So now what?
Peace.
Tuesday, January 29, 2013
What your heart loves best
This past weekend was the weekend of what has become a yearly visit of James Hersch to our church. James plays a guitar and sings, mostly to his own songs. I don't know how his voice remains so strong over so many years - but it's a great, high tenor voice that sings various stories. These are his stories, but they are written so they can be applied to the lives of others, and every year, a few of them apply to my life, and in a way they feel like they are also my stories. I suppose we can share them.
It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times. I don't think I can imagine life without a bunch of change. Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company. Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare. It's not advocacy for anything either, and that's also exciting. I can look at things as they are, very objectively.
As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes. It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there. And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her. And so I see a bit of anger, a bit elevated.
So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit. What to do with this?
Church is where my daughter feels safe. I can sense that. She has a favorite song that James performs every year because she loves it. He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him. After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying. It's the feeling forgotten thing. I told her we would wait, there was no hurry. But I could tell this was another reminder, in her mind, of perhaps being forgotten. In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile. She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.
In my world, with changing jobs, there has strangely not been uncertainty. I'm ready, it's time, and I'm following my heart, even if that sounds cheesy. There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James. I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives... someday we're gonna change... and what matters most, is what your heart loves best." James sang that song, and I really feel it. Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years. But the hesitancy has gone with this job. I had 5 interviews - a lot! Each interview made my desire for this job be even stronger. I better be right! But I think I am right.
By Sunday we had heard many songs. On Sunday morning my daughter sang with James and I think she may be making a turn. By Sunday, she was getting excited about an upcoming dance performance. After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses. When I dropped her off at dance tonight, she was excited. Hopefully the feelings of value she gained over the weekend will continue. She really loves dance.
I think my husband may be the only not having huge change! When it comes down to what is important, it's "what your heart loves best." And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.
God has found us in the midst of all of this. Often I have questioned, God, if something is really out there for me, where is it? God, this new hurdle with my daughter... why? She is a child.
Not everyone gets their prayers answered, even with God in the midst of it all.
But this time, prayers were answered, amidst all the change.
Peace.
It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times. I don't think I can imagine life without a bunch of change. Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company. Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare. It's not advocacy for anything either, and that's also exciting. I can look at things as they are, very objectively.
As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes. It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there. And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her. And so I see a bit of anger, a bit elevated.
So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit. What to do with this?
Church is where my daughter feels safe. I can sense that. She has a favorite song that James performs every year because she loves it. He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him. After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying. It's the feeling forgotten thing. I told her we would wait, there was no hurry. But I could tell this was another reminder, in her mind, of perhaps being forgotten. In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile. She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.
In my world, with changing jobs, there has strangely not been uncertainty. I'm ready, it's time, and I'm following my heart, even if that sounds cheesy. There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James. I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives... someday we're gonna change... and what matters most, is what your heart loves best." James sang that song, and I really feel it. Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years. But the hesitancy has gone with this job. I had 5 interviews - a lot! Each interview made my desire for this job be even stronger. I better be right! But I think I am right.
By Sunday we had heard many songs. On Sunday morning my daughter sang with James and I think she may be making a turn. By Sunday, she was getting excited about an upcoming dance performance. After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses. When I dropped her off at dance tonight, she was excited. Hopefully the feelings of value she gained over the weekend will continue. She really loves dance.
I think my husband may be the only not having huge change! When it comes down to what is important, it's "what your heart loves best." And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.
God has found us in the midst of all of this. Often I have questioned, God, if something is really out there for me, where is it? God, this new hurdle with my daughter... why? She is a child.
Not everyone gets their prayers answered, even with God in the midst of it all.
But this time, prayers were answered, amidst all the change.
Peace.
Tuesday, January 1, 2013
Heel to toe
On 60 Minutes this week, there was a story about chips implanted in a person's brain that enabled the person to move a prosthetic arm and hand by having them simply think about moving it with their mind. I thought how similar that is to what I have experienced with Ampyra - getting function back, but having to think through movement rather than movement happening automatically. And as we enter 2013, I have to wonder, what may be next?
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.
Peace.
Wednesday, December 26, 2012
This I believe.
I believe in hope. Everyone, I believe, carries hope about something; otherwise life would be perfect in every way. Hope can be very simple, or complex; something that will likely happen or a tiny light at the end of a tunnel that seems to keep extending, so the light may get dimmer.
5 years ago, some strange sense of hope, along with a lot of other stuff, pulled me through a bad case of depression from medications which conflicted with each other. With a lot of help, I overcame it.
I hoped, and hope now, that others don't have to experience anything like that. I hope our mental health system improves. Even stronger, I hope that the stigma of mental illness goes away, so people are not afraid to seek help. That hope is one of those where the tunnel seems to keep extending itself, and the light at the end appears daunting and dim.
I hoped I could physically improve from what MS had done to me. When the light at the end of that tunnel seemed almost gone, overnight I started taking Ampyra and have been physically improving for over 2.5 years. Today, with some help, I walked up the 13 stairs at my parents' house instead of scooting on my rear. Although so small, it was a great moment. I will always hope I can run again.
I had a dim hope that one day I could get a Masters degree. It took 4.5 years, but I got it. I hope I'll be able to utilize it more some day. That day may be close, but it's been close previously. So I continue to hope.
There are so many things where, in a sense, I rely on hope.
I believe that the birth of Christ created a lot of hope. Each year, we can be reminded that in the midst of complete chaos, there is always hope.
I hope for peace, in my own life, the lives of others, and the world. I believe Christ brought a glimpse of that into the world with his birth. In the midst of complete chaos, a beautiful child was born in a manger, there was a pause, and there was peace.
In our lives, we can pause and find the same peace, if only for a moment or so. Those moments of peace can generate, or re-ignite, hope.
In these 12 days of Christmas, my hope is that people, including me, can find moments to experience peace, and that the peace, among so much chaos in the world, can build hope. For me it's hope in getting rid of stigma, for continued improvement in physical abilities, for utilizing my Masters degree more, and for so many other places where there are tunnels with light at the end, sometimes near and sometimes far.
For me, there's a little baby inspiring the peace that leads to hope.
I believe in hope.
Peace.
5 years ago, some strange sense of hope, along with a lot of other stuff, pulled me through a bad case of depression from medications which conflicted with each other. With a lot of help, I overcame it.
I hoped, and hope now, that others don't have to experience anything like that. I hope our mental health system improves. Even stronger, I hope that the stigma of mental illness goes away, so people are not afraid to seek help. That hope is one of those where the tunnel seems to keep extending itself, and the light at the end appears daunting and dim.
I hoped I could physically improve from what MS had done to me. When the light at the end of that tunnel seemed almost gone, overnight I started taking Ampyra and have been physically improving for over 2.5 years. Today, with some help, I walked up the 13 stairs at my parents' house instead of scooting on my rear. Although so small, it was a great moment. I will always hope I can run again.
I had a dim hope that one day I could get a Masters degree. It took 4.5 years, but I got it. I hope I'll be able to utilize it more some day. That day may be close, but it's been close previously. So I continue to hope.
There are so many things where, in a sense, I rely on hope.
I believe that the birth of Christ created a lot of hope. Each year, we can be reminded that in the midst of complete chaos, there is always hope.
I hope for peace, in my own life, the lives of others, and the world. I believe Christ brought a glimpse of that into the world with his birth. In the midst of complete chaos, a beautiful child was born in a manger, there was a pause, and there was peace.
In our lives, we can pause and find the same peace, if only for a moment or so. Those moments of peace can generate, or re-ignite, hope.
In these 12 days of Christmas, my hope is that people, including me, can find moments to experience peace, and that the peace, among so much chaos in the world, can build hope. For me it's hope in getting rid of stigma, for continued improvement in physical abilities, for utilizing my Masters degree more, and for so many other places where there are tunnels with light at the end, sometimes near and sometimes far.
For me, there's a little baby inspiring the peace that leads to hope.
I believe in hope.
Peace.
Monday, December 10, 2012
6 steps
I went to a physical therapy (PT) appointment last week... I go to 2 places - at this place, the PT works with me on my Bioness. For those of you who don't know, Bioness for me are cuffs, just below each knee. There's a heel sensor (very small) that goes under the insert in my shoe. When I strike my heel in walking, somehow that sends a signal to these cloth pieces in the cuff, under my knee. Then a signal is sent by electric device under the cloth pieces to muscles, and this somehow gets my foot to kick up and forward. And to have these devices means I am physically doing better. To use them, Bioness, you have to be able to land on your heel when stepping and I didn't used to be able to do that. My therapist today (at a different place) said, "Oh yes, all the people with MS who are on Ampyra are coming in here now and looking into Bioness." But that's a digression.
I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side. The PT explained why it does that. With my MS, I had braces (before the Bioness). With and even before the braces, in order to walk, I would swing my legs out to the sides. Think exaggerated penguin walk. The PT explained that I actually learned to do this so I could walk. It's a different explanation and I like it. The other explanation wouldn't have any learning in it - I just did it. Regardless, in learning to walk this way, it became habit.
Enter Bioness. First I got it for the right leg and the the left. I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking. But what bugs me the most now is my left foot sticking out. If I think about it, I can stop it. It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter. Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists. To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly. When I'm walking for speed, I ignore these things.
This is all actually a digression. While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently. I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky. But he had a determined look on his face. With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker. I think this was his first attempt at walking in awhile.
I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time. He didn't know if he could do that but he did. The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took. And so he made it. He has started something based on a great deal of determination. It reminds me of things I have tried since Ampyra. And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it. 6 steps. It's so small, but it's also so big and important.
Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture." He was there with a walker. I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have? My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working. But the people who get further with this drug are the people who really work at it.
In times whe I feel discouraged, I can remember these people, and how I must continue to fight. I may not be near where I want to be. But we all must start from somewhere. I don't think he had MS. But for so many things, one just never knows what can happen, where science can take us in the future. So, we keep going, we refuse to give up, and we're ready for any new science miracle.
Perhaps 6 steps for him. For me, I don't know. I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.
6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.
This is the good stuff. Life throws other curve balls at the same time. Right before and after I have turned 40 I have had new challenges outside of me getting physically better. Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God. Maybe I'll do that. I think God wants me focus on beating MS anyway.
Peace.
I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side. The PT explained why it does that. With my MS, I had braces (before the Bioness). With and even before the braces, in order to walk, I would swing my legs out to the sides. Think exaggerated penguin walk. The PT explained that I actually learned to do this so I could walk. It's a different explanation and I like it. The other explanation wouldn't have any learning in it - I just did it. Regardless, in learning to walk this way, it became habit.
Enter Bioness. First I got it for the right leg and the the left. I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking. But what bugs me the most now is my left foot sticking out. If I think about it, I can stop it. It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter. Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists. To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly. When I'm walking for speed, I ignore these things.
This is all actually a digression. While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently. I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky. But he had a determined look on his face. With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker. I think this was his first attempt at walking in awhile.
I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time. He didn't know if he could do that but he did. The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took. And so he made it. He has started something based on a great deal of determination. It reminds me of things I have tried since Ampyra. And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it. 6 steps. It's so small, but it's also so big and important.
Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture." He was there with a walker. I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have? My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working. But the people who get further with this drug are the people who really work at it.
In times whe I feel discouraged, I can remember these people, and how I must continue to fight. I may not be near where I want to be. But we all must start from somewhere. I don't think he had MS. But for so many things, one just never knows what can happen, where science can take us in the future. So, we keep going, we refuse to give up, and we're ready for any new science miracle.
Perhaps 6 steps for him. For me, I don't know. I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.
6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.
This is the good stuff. Life throws other curve balls at the same time. Right before and after I have turned 40 I have had new challenges outside of me getting physically better. Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God. Maybe I'll do that. I think God wants me focus on beating MS anyway.
Peace.
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