I've been going to physical therapy (PT) for way over a year. It's a weekly ritual where I started using a gait-assisted treadmill shortly after starting Ampyra. The treadmill holds my upper body in a harness and I walk. I started at .2 mph with a bunch of big therapy (ie fat rubber) bands attached to my feet to help me kick, and my therapist stood behind me doing a lot of work guiding my legs so they went straight and landed on the treadmill, without crossing over each other.
Now the therapy bands are gone and I'm kicking on my own and up to 1.2 miles per hour. My therapist is still behind me, but not doing much at all (she says) and I can walk about 30 seconds on my own.
Today was different. In this weekly walking ritual, I have to think to kick each leg forward with almost every step, in order to keep a rhythm and speed. Today I was thinking of that as well, each leg. But something happened. Even while I was thinking, I had a sensation, and how to explain this is difficult. I had the sensation that I really was walking, that the motion of my foot, pressing from heel to toe, across the ground, was natural - the motions felt natural and not awkward, hesitating, or like I was swaying from side to side in order to walk. In a sense, it felt calm.
That sensation - I don't recall the last time I had it. And with it came this old "runner's high" feeling - that's the feeling that I could keep going forever, that this was easier. And so I kept going for 20 minutes. before we had to stop (muscle recovery thing). We I started again, the feeling didn't come back in quite the same way, but I walked 10 more minutes and then we simply had no more time.
So today I'll celebrate the "runner's high" in my walking, where walking felt natural and that was emotional - it's another one of those things I hadn't realized I had lost - the feeling of walking naturally.
2 times in my life I have heard someone in a presentation say "What's the one thing you want in life?" I won't write it here, but many can guess what it is. The first time I heard it I went home and called my mom in despair. This week someone asked that again. I didn't feel that despair, and today I felt...
Never say never.
You really never know what's going to happen in this mysterious thing called life.
Peace.
Thursday, March 15, 2012
Saturday, March 10, 2012
19, 20, 21, 22... and back again
I was diagnosed with MS a little over 19 years ago. At the time, I was 20 years old. I used to have MS attacks (symptoms flare out of control) frequently - every 5 or 6 months - but today it's been 21 months since I've had an attack. And over 22 years ago, I woke up with tingly legs and MS began. 19, 20, 21, 22, ... I'm a numbers geek.
A year after I was diagnosed with MS, I was one of the first to go on a drug called Betaseron. It's in a class of drugs meant to slow the progression of MS by about a third. I don't think it worked for me. There could be multiple reasons - one is I developed an immunity to it and the other is that my MS is weird. After Betaseron I tried the next newest drug, called Copaxone. It worked somewhat for about 5 years. Then I had a reaction to it which is considered "normal" - chest tightened, hard to breathe, hit all of a sudden - it definitely didn't feel "normal." It felt like, well, I couldn't breathe - I suppose it felt like I was going to die. A week later the same thing happened but my entire body shook for an hour afterward. And a week after that, the same thing happened again, but I shook for over 2 hours. I stopped Copaxone - I would have wound up in the emergency room at the least. Then I tried a couple other drugs which didn't work. Then I had our daughter, Lori - a pricelesss gift.
Right before I found out I was pregnant with Lori, I was investigating having an experimental stem cell transplant at the University of Chicago. Thank goodness for Lori. Right when I was about to make the decision to do something very risky, it seemed something was saying no - there are other plans.
I considered 1 more drug after Lori was born - it's called Tysabri. At first Tysabri seemed like it would be great, but over time, something didn't feel right about Tysabri, so I decided to wait. I recall our pastor saying, "you know I'm not going to make this decision for you, right?" Darn! After my decision he asked what I was going to do instead. I told him I would wait and hope for the best. I suppose waiting with MS can be a common thing to do.
After shoulder surgery, a friend asked me about Ampyra. Ampyra is not meant to slow the course of MS - it's meant to help with walking. But it has done so much more for me. I didn't realize what I couldn't do, but life has changed and now I can do these things:
- lift both feet with my heels on the ground
- do 100 squats, almost every night
- walk around the track without stopping
- write with a pencil
- walk further, and further, and further
- sit up straight
- while sitting, play catch or frisbee with my family
- other things - life is just sharper
So 21 months in with Ampyra. I haven't been really sick either. I think when I'm about to get sick I get very tired and go to bed - that solves things. My daughter has had 2 nasty colds and I've had a scratchy throat.
All this has been going on and is really exciting. And while a happy post with no obstacles might be nice for some people, there is still reality. I walk much more and get asked "wouldn't a wheelchair be easier?" I guess I'm not in this life for easier. The obstacles with a walker are annoying - getting a door to open is hard. People who don't know me think I'm struggling when I'm doing much better.
And while I get better, perceptions in society persist. When a person with MS discloses they have MS, things change - perceptions change. They don't change with everyone, but they do change with some - I think there's a group of people who go look MS up and find everything that could go wrong and assume, because I can't walk well, that I must have other things. I was actually told, after I left a job, that when I was interviewed someone asked if they could question my mental ability to do the job since I have MS. In the list of MS symptoms is short-term memory loss. I don't have it any more than any other mom, but some people look for that. If I forget something, a few people wonder if it could be MS, even if it's losing my keys - which I think I inherited from my mom - definitely not MS! I suppose that part of getting my Masters was proving, to myself and others, that mentally I am fine. And yet, I have this feeling (and these feelings are usually right for me), that some people want to use the listing of short-term memory loss on me. When they try it - it's been tried - it fails. And this kind of thing - making things up about disability without knowing the person behind the disability - are what cause many problems that people with disabilities experience every day.
And although the previous paragraph may seem out of place here, the fact is that as I improve on Ampyra, it doesn't mean there aren't still obstacles thrown in my face, or attempted under the radar. It's a mixed bag - one moment I'm walking and walking and walking, and the next moment something strange happens that is beyond my control.
But the good news is that I continue to get better, little by little, and refuse to accept that any given thing may not get better. One just never knows.
22 months ago I unknowingly entered into the world of disability. For 21 months, I have experienced life changes in an exciting way I never expected. I was 20 years old when I was diagnosed with MS. That was 19 years ago (yes, I'm 39). Those are the facts.
So I try to throw the bad stuff over to God, and I celebrate the facts that Ampyra has changed my life and I continue to improve.
Peace.
A year after I was diagnosed with MS, I was one of the first to go on a drug called Betaseron. It's in a class of drugs meant to slow the progression of MS by about a third. I don't think it worked for me. There could be multiple reasons - one is I developed an immunity to it and the other is that my MS is weird. After Betaseron I tried the next newest drug, called Copaxone. It worked somewhat for about 5 years. Then I had a reaction to it which is considered "normal" - chest tightened, hard to breathe, hit all of a sudden - it definitely didn't feel "normal." It felt like, well, I couldn't breathe - I suppose it felt like I was going to die. A week later the same thing happened but my entire body shook for an hour afterward. And a week after that, the same thing happened again, but I shook for over 2 hours. I stopped Copaxone - I would have wound up in the emergency room at the least. Then I tried a couple other drugs which didn't work. Then I had our daughter, Lori - a pricelesss gift.
Right before I found out I was pregnant with Lori, I was investigating having an experimental stem cell transplant at the University of Chicago. Thank goodness for Lori. Right when I was about to make the decision to do something very risky, it seemed something was saying no - there are other plans.
I considered 1 more drug after Lori was born - it's called Tysabri. At first Tysabri seemed like it would be great, but over time, something didn't feel right about Tysabri, so I decided to wait. I recall our pastor saying, "you know I'm not going to make this decision for you, right?" Darn! After my decision he asked what I was going to do instead. I told him I would wait and hope for the best. I suppose waiting with MS can be a common thing to do.
After shoulder surgery, a friend asked me about Ampyra. Ampyra is not meant to slow the course of MS - it's meant to help with walking. But it has done so much more for me. I didn't realize what I couldn't do, but life has changed and now I can do these things:
- lift both feet with my heels on the ground
- do 100 squats, almost every night
- walk around the track without stopping
- write with a pencil
- walk further, and further, and further
- sit up straight
- while sitting, play catch or frisbee with my family
- other things - life is just sharper
So 21 months in with Ampyra. I haven't been really sick either. I think when I'm about to get sick I get very tired and go to bed - that solves things. My daughter has had 2 nasty colds and I've had a scratchy throat.
All this has been going on and is really exciting. And while a happy post with no obstacles might be nice for some people, there is still reality. I walk much more and get asked "wouldn't a wheelchair be easier?" I guess I'm not in this life for easier. The obstacles with a walker are annoying - getting a door to open is hard. People who don't know me think I'm struggling when I'm doing much better.
And while I get better, perceptions in society persist. When a person with MS discloses they have MS, things change - perceptions change. They don't change with everyone, but they do change with some - I think there's a group of people who go look MS up and find everything that could go wrong and assume, because I can't walk well, that I must have other things. I was actually told, after I left a job, that when I was interviewed someone asked if they could question my mental ability to do the job since I have MS. In the list of MS symptoms is short-term memory loss. I don't have it any more than any other mom, but some people look for that. If I forget something, a few people wonder if it could be MS, even if it's losing my keys - which I think I inherited from my mom - definitely not MS! I suppose that part of getting my Masters was proving, to myself and others, that mentally I am fine. And yet, I have this feeling (and these feelings are usually right for me), that some people want to use the listing of short-term memory loss on me. When they try it - it's been tried - it fails. And this kind of thing - making things up about disability without knowing the person behind the disability - are what cause many problems that people with disabilities experience every day.
And although the previous paragraph may seem out of place here, the fact is that as I improve on Ampyra, it doesn't mean there aren't still obstacles thrown in my face, or attempted under the radar. It's a mixed bag - one moment I'm walking and walking and walking, and the next moment something strange happens that is beyond my control.
But the good news is that I continue to get better, little by little, and refuse to accept that any given thing may not get better. One just never knows.
22 months ago I unknowingly entered into the world of disability. For 21 months, I have experienced life changes in an exciting way I never expected. I was 20 years old when I was diagnosed with MS. That was 19 years ago (yes, I'm 39). Those are the facts.
So I try to throw the bad stuff over to God, and I celebrate the facts that Ampyra has changed my life and I continue to improve.
Peace.
Thursday, March 1, 2012
10 Toes
10 toes. For most of us, all of the toes work - our brain tells them to wiggle, and automatically they wiggle. For some people, the signals get all messed up and toes don't wiggle. Then there are a few people like me. It's another Ampyra story, so if tired of them, skip this post.
When I first started Ampyra, I was in my car one day and to avoid leg cramps, tried to lift my left toes with my heel on the ground. It didn't feel like it was working until I heard "thump, thump, thump." I looked and indeed it was my left foot making that noise. All of a sudden, I could lift my foot, even though I couldn't feel it. "Tap, tap, tap."
Every morning since then, I have a process where I wake up and go sit on a white chair in our bedroom. On that chair, I lift my left foot 5 times in a row, pretend to lift my right foot 5 times, and repeat it. The right foot just stays on the ground while I pretend. Then I lift both feet (pretending with the right foot) up and hold them up for 10 seconds. I repeat that 2 more times. Sounds so simple. And sometimes it's become automatic, but some mornings I have to really concentrate on the muscles that tapping my foot possible.
This winter, waking up was in the dark. I can now feel the sensation of my left foot lifting. And I have continued to pretend my right foot is doing the same thing. But over the months, it has seemed that when I lift both feet to hold them, my right foot has been going up, too - it has seemed like pretend has changed, little by little. I have only sensed this because when putting my feet down, I feel my right foot hitting the carpet... which means it wasn't on the carpet.
Sometimes now it's light when I do these exercises - spring is coming. Now I can see what my feet are doing. The right foot, over time, has transitioned from the pretend land of lifting, to actually lifting. It's strange to sit there and watch this. But my right foot was only doing this when both feet were lifting at once. I contemplated, what if I really concentrated on those toes on my right foot and told them to move - could the right foot lift by itself?
It can! I have to really think about sending a message to my toes. It takes concentration on all toes for it to happen. And there are 2 stubborn toes that take my glares at them.
Who knew so much was involved in lifting toes? Now I think I know.
Peace.
When I first started Ampyra, I was in my car one day and to avoid leg cramps, tried to lift my left toes with my heel on the ground. It didn't feel like it was working until I heard "thump, thump, thump." I looked and indeed it was my left foot making that noise. All of a sudden, I could lift my foot, even though I couldn't feel it. "Tap, tap, tap."
Every morning since then, I have a process where I wake up and go sit on a white chair in our bedroom. On that chair, I lift my left foot 5 times in a row, pretend to lift my right foot 5 times, and repeat it. The right foot just stays on the ground while I pretend. Then I lift both feet (pretending with the right foot) up and hold them up for 10 seconds. I repeat that 2 more times. Sounds so simple. And sometimes it's become automatic, but some mornings I have to really concentrate on the muscles that tapping my foot possible.
This winter, waking up was in the dark. I can now feel the sensation of my left foot lifting. And I have continued to pretend my right foot is doing the same thing. But over the months, it has seemed that when I lift both feet to hold them, my right foot has been going up, too - it has seemed like pretend has changed, little by little. I have only sensed this because when putting my feet down, I feel my right foot hitting the carpet... which means it wasn't on the carpet.
Sometimes now it's light when I do these exercises - spring is coming. Now I can see what my feet are doing. The right foot, over time, has transitioned from the pretend land of lifting, to actually lifting. It's strange to sit there and watch this. But my right foot was only doing this when both feet were lifting at once. I contemplated, what if I really concentrated on those toes on my right foot and told them to move - could the right foot lift by itself?
It can! I have to really think about sending a message to my toes. It takes concentration on all toes for it to happen. And there are 2 stubborn toes that take my glares at them.
Who knew so much was involved in lifting toes? Now I think I know.
Peace.
Saturday, February 25, 2012
At odds
Somewhat having writer's block on how to write on observations...
At our church, for Lent the theme is At Odds with... (I guess you could fill in the blank). If I think about it, the church is at odds with society, at this time, with the whole concept of waking up on Sunday mornings, going to church, Sunday school, etc. That's not the "normal" much in society. The church is at odds with society in having ashes in the form of a cross, for Ash Wednesday - again, not the "normal" for society. Also at odds with having Wednesday soup suppers and then services afterward.
Many people give up things for Lent. I don't know that I have ever done that. I have added reflection time (which I suppose does mean I gave up something else to do so). This Lent I suppose I'm a bit "at odds" with myself in terms of thinking of what I can do. I've been trying to notice things lately, with the sense that in the economic times where we find ourselves, things are different than they used to be.
What I observe is that last year, I noticed a term called the "new normal." Late last year, there was a story somewhere on words that are overused and that was there. Another similar term is the "new reality." These terms seem, to me, to be used whenever there is a context of a financial struggle.
But what perplexes me is the word "new" as part of "normal" and "reality." To me, the struggles may seem new, but they really aren't new. Maybe they have surfaced and seem new to some, but they were coming and I think I saw them awhile ago. Maybe where I live is behind in terms of being hit financially, but I'm not sure that's it. So this "new normal" and "new reality" bothers me. Maybe I saw them in a segment of the population - did it hit people with disabilities first and that's why this doesn't seem new to me? Or maybe it's because I live in the disability world and just noticed it, but it's been going on everywhere and there are now terms for it. But it seems that wherever I turn these days, there's the sense that this is new.
So going back to Lent, I think I want to try to find a way to be at odds with this "new" perception. It's not to say that I don't see that it exists everywhere I turn. It's depressing really - I know people, more than just 1, who are close to being homeless and I would never have guessed that would happen to them. There's the feeling that no one is immune from all of this - the sense that no one knows what tomorrow will bring, and it's in a negative sense.
So this "new" perception, I've noticed, does not bring out the best in people. People try to help others; people try to be nice. But there's also a sense of urgency everywhere - and so then it seems to turn people somewhat and there's a "snap" effect and a sense of frustration.
To be at odds with the "new" perception, I suppose I have to figure out ways myself not to "snap," not to be frustrated, not to dwell on the "new" everywhere I turn. I can't say I can make a total turn and become happy about everything, because that's not reality.
I suppose what I can do is try to help those who are frustrated and to listen, knowing that I probably can't help solve their frustrations, but I can listen. I did that twice this past week - and for the few people who read this, know me, and may think they know who I listened to, I'd say it's probably not who you are thinking and you probably don't know them.
So Lent, at odds with society - I think for me it's going to a reflective time of thinking how, even though I will continue to have frustrations, I can open myself to not dwell exclusively on frustrations. And it's going to be a reflective time on how I can best listen, because if I look at this past week, there are people who just need someone to listen. They may need to actually cry. I'm not a counselor and can't solve their frustrations. I'm not sure why a few people have been asking me to listen. But I can listen, just as people have listened to me. That is, apparently, just what some people want - they said "thanks for the ear."
Lent - at odds - looking for a light in the midst of what seems a time of darkness, and being open to listening to those who are struggling, even as I may struggle.
Peace.
At our church, for Lent the theme is At Odds with... (I guess you could fill in the blank). If I think about it, the church is at odds with society, at this time, with the whole concept of waking up on Sunday mornings, going to church, Sunday school, etc. That's not the "normal" much in society. The church is at odds with society in having ashes in the form of a cross, for Ash Wednesday - again, not the "normal" for society. Also at odds with having Wednesday soup suppers and then services afterward.
Many people give up things for Lent. I don't know that I have ever done that. I have added reflection time (which I suppose does mean I gave up something else to do so). This Lent I suppose I'm a bit "at odds" with myself in terms of thinking of what I can do. I've been trying to notice things lately, with the sense that in the economic times where we find ourselves, things are different than they used to be.
What I observe is that last year, I noticed a term called the "new normal." Late last year, there was a story somewhere on words that are overused and that was there. Another similar term is the "new reality." These terms seem, to me, to be used whenever there is a context of a financial struggle.
But what perplexes me is the word "new" as part of "normal" and "reality." To me, the struggles may seem new, but they really aren't new. Maybe they have surfaced and seem new to some, but they were coming and I think I saw them awhile ago. Maybe where I live is behind in terms of being hit financially, but I'm not sure that's it. So this "new normal" and "new reality" bothers me. Maybe I saw them in a segment of the population - did it hit people with disabilities first and that's why this doesn't seem new to me? Or maybe it's because I live in the disability world and just noticed it, but it's been going on everywhere and there are now terms for it. But it seems that wherever I turn these days, there's the sense that this is new.
So going back to Lent, I think I want to try to find a way to be at odds with this "new" perception. It's not to say that I don't see that it exists everywhere I turn. It's depressing really - I know people, more than just 1, who are close to being homeless and I would never have guessed that would happen to them. There's the feeling that no one is immune from all of this - the sense that no one knows what tomorrow will bring, and it's in a negative sense.
So this "new" perception, I've noticed, does not bring out the best in people. People try to help others; people try to be nice. But there's also a sense of urgency everywhere - and so then it seems to turn people somewhat and there's a "snap" effect and a sense of frustration.
To be at odds with the "new" perception, I suppose I have to figure out ways myself not to "snap," not to be frustrated, not to dwell on the "new" everywhere I turn. I can't say I can make a total turn and become happy about everything, because that's not reality.
I suppose what I can do is try to help those who are frustrated and to listen, knowing that I probably can't help solve their frustrations, but I can listen. I did that twice this past week - and for the few people who read this, know me, and may think they know who I listened to, I'd say it's probably not who you are thinking and you probably don't know them.
So Lent, at odds with society - I think for me it's going to a reflective time of thinking how, even though I will continue to have frustrations, I can open myself to not dwell exclusively on frustrations. And it's going to be a reflective time on how I can best listen, because if I look at this past week, there are people who just need someone to listen. They may need to actually cry. I'm not a counselor and can't solve their frustrations. I'm not sure why a few people have been asking me to listen. But I can listen, just as people have listened to me. That is, apparently, just what some people want - they said "thanks for the ear."
Lent - at odds - looking for a light in the midst of what seems a time of darkness, and being open to listening to those who are struggling, even as I may struggle.
Peace.
Saturday, February 18, 2012
Biking
When I was diagnosed with MS, I was just starting to run again (because MS is such and up and down disease). So I ran a ton, but I also biked. I went home that summer and bought a new bike, and would ride the bike all over central Ohio, especially the summer between my junior and senior years - run in the morning, bike at night. Kenyon College is in a beautiful area, and in any direction there was a beautiful ride waiting for me.
Many years later I got a handcycle, so I have used that for a few years although I hurt my shoulder and have had to cut back on that.
Before shoulder surgery, I got a recumbant bike "thing" for at home. It's a small machine with pedals and it has a motor. I can turn it on and then there's an adjustable knob that makes the pedals move, slower or faster. It got hidden while I finished my Masters. But I took it out a few weeks ago and set it up in our living room so our house looks even more like a rehab center than a house. There's the bike, the therapy bands hooked to the banister, the standing frame (I sit on a seat and crank it up until I am standing straight and it holds me in place), the big therapy ball, ... When Lori's friends are here, we have the coolest house with so many cool toys!
A therapist had set up the pedals on this bike so my feet don't slide out. So I've been biking! Feet go in pedals, motor turned up, go! Then I pretend that really I am moving the pedals, and I am doing some work. But when the timer runs out and the motor stops, I realize I'm not doing a lot of the work. But I do enjoy biking again. It's not beautiful, central Ohio, but it's something.
We just got our daughter a new bike for her birthday and will give it to her on Monday. Then she and I can bike together this summer. I'll use my handcyle. But one just never knows - maybe someday I'll ride a "real" bike again.
Never give up on dreams.
Peace.
Many years later I got a handcycle, so I have used that for a few years although I hurt my shoulder and have had to cut back on that.
Before shoulder surgery, I got a recumbant bike "thing" for at home. It's a small machine with pedals and it has a motor. I can turn it on and then there's an adjustable knob that makes the pedals move, slower or faster. It got hidden while I finished my Masters. But I took it out a few weeks ago and set it up in our living room so our house looks even more like a rehab center than a house. There's the bike, the therapy bands hooked to the banister, the standing frame (I sit on a seat and crank it up until I am standing straight and it holds me in place), the big therapy ball, ... When Lori's friends are here, we have the coolest house with so many cool toys!
A therapist had set up the pedals on this bike so my feet don't slide out. So I've been biking! Feet go in pedals, motor turned up, go! Then I pretend that really I am moving the pedals, and I am doing some work. But when the timer runs out and the motor stops, I realize I'm not doing a lot of the work. But I do enjoy biking again. It's not beautiful, central Ohio, but it's something.
We just got our daughter a new bike for her birthday and will give it to her on Monday. Then she and I can bike together this summer. I'll use my handcyle. But one just never knows - maybe someday I'll ride a "real" bike again.
Never give up on dreams.
Peace.
Saturday, February 11, 2012
A tribute to Dr. Schermer
It's February 11. Every year since I was diagnosed on this day, I go through a time before the 11th when I feel depleted, helpless, and a bit confused as to why. Then at some point it hits me - this day, this time of year.
On this day I traveled with my good friend Kelley, an hour from Kenyon College to Ohio State University Hospital, where I had seemingly infinite tests over the course of years, with none of the tests indicating anything. But this day would be different.
The physician for Kenyon College at that time was wonderful. Dr. Schermer. He was the only one who was honest with me about what was occurring. He always had thought I had MS, but he never said so. Others said no way, this can't be MS. He talked to me the day before I went, looked me in the eyes, and told me I would get an answer, and gave me his phone number. I don't know if he knew that the tests they had scheduled for that day were the wrong tests to diagnosis MS, that the tests shifted halfway through the day.
Because of the shift in tests, all I remember during that day was going from test to another - random tests that seemed like last-ditch efforts to find something - anything. These efforts had increased because I had lost my balance over Christmas break when it was dark, hit something, and got a large gash in my forehead requiring stitches. When I returned to Kenyon and Dr. Schermer removed the stitches, he pushed for finding an answer.
Feb 11 began with 2 random nerve tests which were a bit painful. Then I had another MRI (over 3 years, I had tons of these). But during this one, wait, something had been found. That led to more MRI images all of a sudden, shooting dye to show things better. Then a spinal tap was scheduled and done. Having a needle stuck in my spinal cord to remove fluid was no fun - I don't recommend them for anyone, unless needed. There were more tests, too.
I had been reading - I knew the changes in tests were pointing toward an MS diagnosis. But no one could say anything until I saw my physician. I wonder, do people realize how that felt? I had my friend Kelley. She was awesome. But I was in this big hospital in Ohio. My parents were in Colorado. I was alone. No one was saying anything because they couldn't. Surely a 20 year old was ok with this?
When I finally saw my physician at the end of the day, he told me there was no tumor in my spine but there were a few lesions indicative of MS. Then I got more bloodwork to make sure this was, indeed, MS. Yup - bingo!
Knowing - in a sense there was relief in that. It wasn't easy. I had a great support network at Kenyon College. Ohio State tried to pair me with an MS specialist which didn't go well. I begged to get to keep the same neurologist and I got to keep him. Dr. Schermer also made sure of that.
Dr. Schermer stayed involved. When I had an MS attack at Kenyon, he infused me with steroids. Years later we laughed at this - "remember when?" When I got the flu, he scolded me for nOT getting a flu shot, and that I had better be the first one in line for flu shots every year after that. I was but now I've stopped. He's many states away and can't look me in the eye and scold me. I'm on Ampyra and haven't been sick since that started (well,, I had a 1 day fever). Not getting sick is so odd, but so are things like craving milk and using a pill of Prednisone (a steroid) about once a month to calm leg spasms and help me sleep. Steroids usually don't aid sleeping!
I've been back to Kenyon twice in recent years. I love that place. I hope my daughter can go there. Both times I saw Dr. Schermer. He's the best. We can talk politics and it's in a way like talking to myself and getting very excited that someone thinks the same way. He tells me about Indian reservations and medical care there (he spent a year practicing medicine on a reservation, or near one) - I learn. He shows my daughter horses, lets her play with his dogs, and gives her all the ice cream she could ever want. He can't wait to hear if I'm on something new. I know he knows I'm on Ampyra. But I'm much better than when I last saw him, less than a year ago. I know he's still cheering for me in Ohio. He has an incredible enthusiasm and passion for the important things in life.
So today I remember the day. I remember the year as a fog, living in a dark room on the 4th floor of a dorm. I remember an incredibly supportive community called Kenyon College. I remember supportive friends and family back home.
I celebrate Ampyra. 20 months without an MS attack. Walking around the track in 21:44 without having to stop to rest. Walking up the big hill to my daughter's school for the first time - the office staff so happy to see that - a boy telling me I looked like I was dancing - and the next time I saw him he said "you're still dancing." So many little things I took for granted. Soon I'll get the Bioness (www.bioness.com) to help me walk.
But mainly this year, I'm going to remember the role Dr. Schermer played, and the wonderful person he will always be. Thanks to him for all the caring, always believing in me, always concerned about me, and the laughter we shared years later.
Peace.
On this day I traveled with my good friend Kelley, an hour from Kenyon College to Ohio State University Hospital, where I had seemingly infinite tests over the course of years, with none of the tests indicating anything. But this day would be different.
The physician for Kenyon College at that time was wonderful. Dr. Schermer. He was the only one who was honest with me about what was occurring. He always had thought I had MS, but he never said so. Others said no way, this can't be MS. He talked to me the day before I went, looked me in the eyes, and told me I would get an answer, and gave me his phone number. I don't know if he knew that the tests they had scheduled for that day were the wrong tests to diagnosis MS, that the tests shifted halfway through the day.
Because of the shift in tests, all I remember during that day was going from test to another - random tests that seemed like last-ditch efforts to find something - anything. These efforts had increased because I had lost my balance over Christmas break when it was dark, hit something, and got a large gash in my forehead requiring stitches. When I returned to Kenyon and Dr. Schermer removed the stitches, he pushed for finding an answer.
Feb 11 began with 2 random nerve tests which were a bit painful. Then I had another MRI (over 3 years, I had tons of these). But during this one, wait, something had been found. That led to more MRI images all of a sudden, shooting dye to show things better. Then a spinal tap was scheduled and done. Having a needle stuck in my spinal cord to remove fluid was no fun - I don't recommend them for anyone, unless needed. There were more tests, too.
I had been reading - I knew the changes in tests were pointing toward an MS diagnosis. But no one could say anything until I saw my physician. I wonder, do people realize how that felt? I had my friend Kelley. She was awesome. But I was in this big hospital in Ohio. My parents were in Colorado. I was alone. No one was saying anything because they couldn't. Surely a 20 year old was ok with this?
When I finally saw my physician at the end of the day, he told me there was no tumor in my spine but there were a few lesions indicative of MS. Then I got more bloodwork to make sure this was, indeed, MS. Yup - bingo!
Knowing - in a sense there was relief in that. It wasn't easy. I had a great support network at Kenyon College. Ohio State tried to pair me with an MS specialist which didn't go well. I begged to get to keep the same neurologist and I got to keep him. Dr. Schermer also made sure of that.
Dr. Schermer stayed involved. When I had an MS attack at Kenyon, he infused me with steroids. Years later we laughed at this - "remember when?" When I got the flu, he scolded me for nOT getting a flu shot, and that I had better be the first one in line for flu shots every year after that. I was but now I've stopped. He's many states away and can't look me in the eye and scold me. I'm on Ampyra and haven't been sick since that started (well,, I had a 1 day fever). Not getting sick is so odd, but so are things like craving milk and using a pill of Prednisone (a steroid) about once a month to calm leg spasms and help me sleep. Steroids usually don't aid sleeping!
I've been back to Kenyon twice in recent years. I love that place. I hope my daughter can go there. Both times I saw Dr. Schermer. He's the best. We can talk politics and it's in a way like talking to myself and getting very excited that someone thinks the same way. He tells me about Indian reservations and medical care there (he spent a year practicing medicine on a reservation, or near one) - I learn. He shows my daughter horses, lets her play with his dogs, and gives her all the ice cream she could ever want. He can't wait to hear if I'm on something new. I know he knows I'm on Ampyra. But I'm much better than when I last saw him, less than a year ago. I know he's still cheering for me in Ohio. He has an incredible enthusiasm and passion for the important things in life.
So today I remember the day. I remember the year as a fog, living in a dark room on the 4th floor of a dorm. I remember an incredibly supportive community called Kenyon College. I remember supportive friends and family back home.
I celebrate Ampyra. 20 months without an MS attack. Walking around the track in 21:44 without having to stop to rest. Walking up the big hill to my daughter's school for the first time - the office staff so happy to see that - a boy telling me I looked like I was dancing - and the next time I saw him he said "you're still dancing." So many little things I took for granted. Soon I'll get the Bioness (www.bioness.com) to help me walk.
But mainly this year, I'm going to remember the role Dr. Schermer played, and the wonderful person he will always be. Thanks to him for all the caring, always believing in me, always concerned about me, and the laughter we shared years later.
Peace.
Wednesday, February 8, 2012
This day
Sometimes a day, though just another mundane day, seems a bit different than just another mundane day. Today was one of those days.
I didn't wake up in the best mood because I had been up at least 4 times with leg spasms last night. Leg spasms are terrific. My whole leg will actually jump and then may shake as muscles cramp. It hurts in an annoying way that is hard to describe. The only way to alleviate it is to get up and walk. Getting up 4 times to walk is a bit irritating.
My first stop this morning was 45 minutes from my house, across town, through rush hour, to get a new back for my wheelchair, and NPR was having their fundraising time - seriously, today? Getting a new wheelchair back should have been exciting because it's a solid back and the handles behind the wheelchair are positioned, bent in rather than sticking out, so people are less likely to grab them and start pushing me without asking. Since I now have this strange sensation that I need to sit straighter, I need a wheelchair back that is straight. The problem? It was about 10 feet into the store, and it's easier to grab my walker than to go through complete wheelchair assembly right now. Times have changed. By the time the wheelchair was ready, my legs were ready to walk - Ampyra kicks in at about 10:30 and says, "Walk!" It's a strange sensation where I can feel my leg muscles turn on and stiffen a bit.
But I had another 35 minutes of driving back to work in this irritated state of having to get up 4 times last night and then being ready to walk but sitting in my wheelchair. As I drove, I decided I didn't want to walk loops at work today - I've been a bit "down" lately and need some kind of change. So forget the wheelchair today - no more wheelchair assembly for me! I found a parking spot, got Bart (the walker) out, and was off. I think my balance must be improving because taking Bart out of the huge van used to be impossible.
I made it into work without a problem - I was stronger than the last time I tried this. But then I had to figure things out... with a walker, there are new obstacles. I told a friend, via computer, than I had walked and was discovering obstacles and she said, "like what?" Interesting as she has a disability, but doesn't use a walker. So, here are obstacles. To go anywhere fast was not an option, and I had to determine how much energy I had. Getting coffee, carrying coffee, getting anything, carrying anything - difficult. Imagine having to hold onto something at all times, only be able to use 1 hand/arm, and still not be quite steady. Simply going to the bathroom was just different, because there are doors involved. The biggest obstacle had to be my office chair, which has wheels and swivels. I take my leg braces off when not walking. Doing this with a rolling, swiveling chair was comical.
The whole day was one of those where questions are asked and I answer. When I turned on my instant message part of my email to ask someone a question, a few people saw it. "BETH!!!!!!!!!!!! Can I send you something and get your thoughts? BETH, did you know..... BETH... what do you think? BETH... what should I do? BETH... do you think I should do this?" It was one of those days.
Elevators! Going home, of course the furthest elevator popped open. I wouldn't make it in time. I was tired. So I lined up Bart to point toward the elevator and got in almost a race starting position...
On my mark, get set, reach behind me and push the button, ... go go go ... ding! (elevator opens), go go go... ram Bart into the elevator opening just in time. Ha elevator! I win!! Wait. Hit 1 to get to first floor. Start twisting as elevator is moving. Ding! Twist twist twist... ram Bart into elevator entrance again. Someone should have videotaped that part of the day!
Whew! Back to the van. There's a short area that's a bit steeper before the parking area. At 5pm, I was tired yet determined, and I made it down that and around to my van. I pushed up and got in. Then I had to move Bart to open the middle door, open the door, and maneuver Bart inside the van. Done!
On my way home, with NPR again fundraising (since I give, can't they fundraise when I'm on vacation?), I turned the 80s station on. This was the best part of the day. If 80s geeks recall, Mr. Mister (a group) had a song. And then, ..., "Life is a mystery, everyone must stand alone, I hear you call my name, and it feels like (pause), home." There it was - Madonna. So the mom in the big white mini van (that's me) cranked it and sang all the words, just like during the Superbowl halftime show, when her daughter retreated to her room at the horror of her mom's excitement.
Just like a prayer... on this mundane day, which started in an annoying way, trying to get through things, trying new things, testing limits...
And as I'm finishing this, there's a wood carving of Jesus carrying a cross right next to me. He helps me through all days, including the days where I feel tested and test things myself. And there's always a bright spot somewhere.
Peace.
I didn't wake up in the best mood because I had been up at least 4 times with leg spasms last night. Leg spasms are terrific. My whole leg will actually jump and then may shake as muscles cramp. It hurts in an annoying way that is hard to describe. The only way to alleviate it is to get up and walk. Getting up 4 times to walk is a bit irritating.
My first stop this morning was 45 minutes from my house, across town, through rush hour, to get a new back for my wheelchair, and NPR was having their fundraising time - seriously, today? Getting a new wheelchair back should have been exciting because it's a solid back and the handles behind the wheelchair are positioned, bent in rather than sticking out, so people are less likely to grab them and start pushing me without asking. Since I now have this strange sensation that I need to sit straighter, I need a wheelchair back that is straight. The problem? It was about 10 feet into the store, and it's easier to grab my walker than to go through complete wheelchair assembly right now. Times have changed. By the time the wheelchair was ready, my legs were ready to walk - Ampyra kicks in at about 10:30 and says, "Walk!" It's a strange sensation where I can feel my leg muscles turn on and stiffen a bit.
But I had another 35 minutes of driving back to work in this irritated state of having to get up 4 times last night and then being ready to walk but sitting in my wheelchair. As I drove, I decided I didn't want to walk loops at work today - I've been a bit "down" lately and need some kind of change. So forget the wheelchair today - no more wheelchair assembly for me! I found a parking spot, got Bart (the walker) out, and was off. I think my balance must be improving because taking Bart out of the huge van used to be impossible.
I made it into work without a problem - I was stronger than the last time I tried this. But then I had to figure things out... with a walker, there are new obstacles. I told a friend, via computer, than I had walked and was discovering obstacles and she said, "like what?" Interesting as she has a disability, but doesn't use a walker. So, here are obstacles. To go anywhere fast was not an option, and I had to determine how much energy I had. Getting coffee, carrying coffee, getting anything, carrying anything - difficult. Imagine having to hold onto something at all times, only be able to use 1 hand/arm, and still not be quite steady. Simply going to the bathroom was just different, because there are doors involved. The biggest obstacle had to be my office chair, which has wheels and swivels. I take my leg braces off when not walking. Doing this with a rolling, swiveling chair was comical.
The whole day was one of those where questions are asked and I answer. When I turned on my instant message part of my email to ask someone a question, a few people saw it. "BETH!!!!!!!!!!!! Can I send you something and get your thoughts? BETH, did you know..... BETH... what do you think? BETH... what should I do? BETH... do you think I should do this?" It was one of those days.
Elevators! Going home, of course the furthest elevator popped open. I wouldn't make it in time. I was tired. So I lined up Bart to point toward the elevator and got in almost a race starting position...
On my mark, get set, reach behind me and push the button, ... go go go ... ding! (elevator opens), go go go... ram Bart into the elevator opening just in time. Ha elevator! I win!! Wait. Hit 1 to get to first floor. Start twisting as elevator is moving. Ding! Twist twist twist... ram Bart into elevator entrance again. Someone should have videotaped that part of the day!
Whew! Back to the van. There's a short area that's a bit steeper before the parking area. At 5pm, I was tired yet determined, and I made it down that and around to my van. I pushed up and got in. Then I had to move Bart to open the middle door, open the door, and maneuver Bart inside the van. Done!
On my way home, with NPR again fundraising (since I give, can't they fundraise when I'm on vacation?), I turned the 80s station on. This was the best part of the day. If 80s geeks recall, Mr. Mister (a group) had a song. And then, ..., "Life is a mystery, everyone must stand alone, I hear you call my name, and it feels like (pause), home." There it was - Madonna. So the mom in the big white mini van (that's me) cranked it and sang all the words, just like during the Superbowl halftime show, when her daughter retreated to her room at the horror of her mom's excitement.
Just like a prayer... on this mundane day, which started in an annoying way, trying to get through things, trying new things, testing limits...
And as I'm finishing this, there's a wood carving of Jesus carrying a cross right next to me. He helps me through all days, including the days where I feel tested and test things myself. And there's always a bright spot somewhere.
Peace.
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