We, out in disability land, hate when people come up to us, and by way of introduction, ask why we use a wheelchair, or whatever.
But a friend noted our typical greetings to each other, after I sent him a message which began "How's your infection?"
It's true, really. It's quite common for me to wheel somewhere and be asked "what level are you?" as an introduction, from another wheelchair user. And for me that's ok - I think A Ha! Fooled you! I have MS.
I don't like going to MS functions, because here's how the intros go...
"How long have you had MS?" ... "Wow. You were young." Really? No duh! I did feel like the ONLY one back then. And then open my autobiography of MS and all the drugs I have tried.
What's best is to show up to ski or at a handcycling event. Then, for some reason, it doesn't seem "allowed." Then we're all out there to have fun.
And this year I'll miss the big handcycling ride. I'm actually letting my shoulder heal. It's finally feeling better. Drives me crazy to not be out there, but I'm working on my legs now and that's exhausting.
So another intro: "How's your shoulder?"
In a way, it's comical. But then, maybe annoying sometimes.
I guess we should just start with "How are you?" and see where that gets us.
"How's that new medicine?" It's great. But I'm working hard so I'm exhausted. I'd better end this post and go to bed.
Peace.
Thursday, September 23, 2010
Tuesday, September 21, 2010
One little boy
He sits quietly and patiently,
waiting for his mom
who is absent
along with anyone else who could support him.
My husband notices him
and goes to talk to him at halftime,
which is when his mom arrives,
a half hour late and everyone has left.
She thinks my husband is someone else;
and he does know the boy, but from a different time.
The boy leaves with his mom, quietly.
It's been unclear why they come and go as they do,
with him always alone,
dropped off, picked up,
and often at the wrong time.
He’s wonderful and gifted.
I hope she knows this. I wish she could see this.
It is unclear why she and anyone else is never around.
I hope someone sees his gifts
and is able to cheer him on through his life,
because he is very special.
waiting for his mom
who is absent
along with anyone else who could support him.
My husband notices him
and goes to talk to him at halftime,
which is when his mom arrives,
a half hour late and everyone has left.
She thinks my husband is someone else;
and he does know the boy, but from a different time.
The boy leaves with his mom, quietly.
It's been unclear why they come and go as they do,
with him always alone,
dropped off, picked up,
and often at the wrong time.
He’s wonderful and gifted.
I hope she knows this. I wish she could see this.
It is unclear why she and anyone else is never around.
I hope someone sees his gifts
and is able to cheer him on through his life,
because he is very special.
Sunday, September 19, 2010
Broken synapses and Ampyra
Synapse: the point at which a nervous impulse travels from one neuron to another.
And that is what Ampyra works to correct. Potassium channels are blocked and signals flow through synapses which are defective. Blocking potassium channels allows this, somehow. Obviously I'm not a doctor.
Interesting to see what is corrected - what works and what does not work.
Left foot lifts.
Right foot begins to lift.
Walking faster and further.
Sitting straighter without hanging onto something for dear life.
Getting up legs work, muscles return ... little leg muscles can be seen.
But it's still MS - doing all this can be fatiguing.
A synapse is still blocked.
It's in my back.
It's why I was difficult to diagnose.
... (back a few years) ...
Pins and needles came in legs for 2 weeks when I'm 17, then they go away.
Repeat that one year later.
College - if I'm to run faster I must be thinner.
I'm thinner ... getting thinner ... I'm not eating enough.
But I'm getting slower. Something is wrong. I'm not thin enough.
It's something else (though I still think I could be thinner - thinner than 5'4" and 107 pounds!). My coach makes a tape of me running.
I start fine, then I begin to bend over from a bit above the waist.
This cannot be MS, according to doctors. Are you eating enough? (I lie)
This has to be something else... until the day I am diagnosed ... and then it isn't something else. And I am plenty thin.
There were and are 2 lesions on my spine. That's it.
With that, there's still a stubborn synapse that's broken. Things are getting better with Ampyra. But standing...
15 seconds without support.
I can only stand so long before the bend of my body collapses me.
I start again, trying to hold an upright position.
My body starts to bend.
I reach and am stabilized by a bar.
And I begin again.
15 more seconds.
Bending. Reaching. Stabilizing.
What causes this? God, what causes this? Do others experience this? I suspect it's different for everyone.
For me, I think it's 1 main broken synapse.
Routine physical: "You are so healthy. You have really strong stomach muscles."
True. But there's something missing in my back. The lesion is right there - at the point I bend.
And so I continue to search for answers. It's all a bunch of experiments.
I push hard.
I exhaust myself.
But it's quite clear that the broken synapse may not be helped with all of this.
Or can it?
Synapse: the point at which a nervous impulse travels from one neuron to another.
Only time will tell. And I won't give up, because people have already done that for me.
Other people support me, hope for me, gosh I know they pray for me.
It's really back to me, alone. But I know God is right there beside me.
And that is what Ampyra works to correct. Potassium channels are blocked and signals flow through synapses which are defective. Blocking potassium channels allows this, somehow. Obviously I'm not a doctor.
Interesting to see what is corrected - what works and what does not work.
Left foot lifts.
Right foot begins to lift.
Walking faster and further.
Sitting straighter without hanging onto something for dear life.
Getting up legs work, muscles return ... little leg muscles can be seen.
But it's still MS - doing all this can be fatiguing.
A synapse is still blocked.
It's in my back.
It's why I was difficult to diagnose.
... (back a few years) ...
Pins and needles came in legs for 2 weeks when I'm 17, then they go away.
Repeat that one year later.
College - if I'm to run faster I must be thinner.
I'm thinner ... getting thinner ... I'm not eating enough.
But I'm getting slower. Something is wrong. I'm not thin enough.
It's something else (though I still think I could be thinner - thinner than 5'4" and 107 pounds!). My coach makes a tape of me running.
I start fine, then I begin to bend over from a bit above the waist.
This cannot be MS, according to doctors. Are you eating enough? (I lie)
This has to be something else... until the day I am diagnosed ... and then it isn't something else. And I am plenty thin.
There were and are 2 lesions on my spine. That's it.
With that, there's still a stubborn synapse that's broken. Things are getting better with Ampyra. But standing...
15 seconds without support.
I can only stand so long before the bend of my body collapses me.
I start again, trying to hold an upright position.
My body starts to bend.
I reach and am stabilized by a bar.
And I begin again.
15 more seconds.
Bending. Reaching. Stabilizing.
What causes this? God, what causes this? Do others experience this? I suspect it's different for everyone.
For me, I think it's 1 main broken synapse.
Routine physical: "You are so healthy. You have really strong stomach muscles."
True. But there's something missing in my back. The lesion is right there - at the point I bend.
And so I continue to search for answers. It's all a bunch of experiments.
I push hard.
I exhaust myself.
But it's quite clear that the broken synapse may not be helped with all of this.
Or can it?
Synapse: the point at which a nervous impulse travels from one neuron to another.
Only time will tell. And I won't give up, because people have already done that for me.
Other people support me, hope for me, gosh I know they pray for me.
It's really back to me, alone. But I know God is right there beside me.
Tuesday, September 14, 2010
Together
My older brother and I went to my "Uncle Harry'a" funsral today.
Upon arrival, we seemed a bit swarmed by all of our parenta' friends. Surprisingly, no one looked at my wheelchair. But maybe I shouldn't be so surprised - it's Ft. Collins. There are more reasons but I think "Ft. Collins" is a good one.
We sat with Fred, who was my dad's student long ago, who now teaches history at CU, and who is brilliant, funny, and caring. No one has ever done this - usually everyone stands and I sit, which is fine. But on the last hymn, Fred sat with me and didn't get up. That's Fred - he's unique.
I saw my first piano teacher, Mrs. Wilbur. I was amazed at her - I remember her as a grandmother figure, but she was there, not as a grandma, but as someone who seemed to be saying to me, "I'm strong and you are, too."
I saw my second piano teacher (I switched in 6th grade) who I see more frequently than others.
Many other people I saw - one wanted to talk athletics and we joked about how, like a good athlete, I had handcycled too hard too early.
And then of course there was the service. I never knew Uncle Harry had such a strong faith. This was quite evident in the service and in the words people spoke of him.
I guess I didn't realize hia love of music was so strong. A concerto contest in Ft. Collins was named after him and hia late wife. I had participated in the junior division of this contest. Fairly recently I uncovered a tape recording of when I had performed for that. It's now more special.
It can be nerve-wracking to go somewhere and see people I hadn't seen in awhile. But I was reminded that these people who were there knew me as a little girl, and to them I am the same Beth.
There were many tears at this service and hymns like "How Great Thou Art' seemed to have such power.
And the readings - so true to Uncle Harry, like this part of one:
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
I'll miss Uncle Harry. He won't be forgotten.
Peace.
Upon arrival, we seemed a bit swarmed by all of our parenta' friends. Surprisingly, no one looked at my wheelchair. But maybe I shouldn't be so surprised - it's Ft. Collins. There are more reasons but I think "Ft. Collins" is a good one.
We sat with Fred, who was my dad's student long ago, who now teaches history at CU, and who is brilliant, funny, and caring. No one has ever done this - usually everyone stands and I sit, which is fine. But on the last hymn, Fred sat with me and didn't get up. That's Fred - he's unique.
I saw my first piano teacher, Mrs. Wilbur. I was amazed at her - I remember her as a grandmother figure, but she was there, not as a grandma, but as someone who seemed to be saying to me, "I'm strong and you are, too."
I saw my second piano teacher (I switched in 6th grade) who I see more frequently than others.
Many other people I saw - one wanted to talk athletics and we joked about how, like a good athlete, I had handcycled too hard too early.
And then of course there was the service. I never knew Uncle Harry had such a strong faith. This was quite evident in the service and in the words people spoke of him.
I guess I didn't realize hia love of music was so strong. A concerto contest in Ft. Collins was named after him and hia late wife. I had participated in the junior division of this contest. Fairly recently I uncovered a tape recording of when I had performed for that. It's now more special.
It can be nerve-wracking to go somewhere and see people I hadn't seen in awhile. But I was reminded that these people who were there knew me as a little girl, and to them I am the same Beth.
There were many tears at this service and hymns like "How Great Thou Art' seemed to have such power.
And the readings - so true to Uncle Harry, like this part of one:
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
I'll miss Uncle Harry. He won't be forgotten.
Peace.
Friday, September 10, 2010
When MS keeps you from those you love
Uncle Harry's baptismal journey ended yesterday. He wasn't really my uncle, but he was a close family friend and I think he didn't want to be called Mr. Rosenberg. He watched us grow up; I played with his granddaughter; he taught me about Kentucky Fried Chicken :)
He would always stop to visit once I graduated from high school, moved away from home, and came back. My parents always told me that he would ask about me.
I was diagnosed with MS.
For awhile, you couldn't tell, or I could hide it by standing still. Eventually I used a walking stick, then a leg brace, then a wheelchair (due to being pregnant), then my daughter's stroller, then a walker, and usually a combo of things.
The tricky part is when I would add something. When I added the brace, it was emotional and I remember my doctor asking me if I was ok and if I was ready for this. This doctor really understands me - I can't hide my emotions like I can for most people.
I got the brace and let it sit in my closet. I used to do a big walk and there was a steep hill that used to frighten me. One day I decided to try using the brace. And suddenly the hill was no longer frightening - I was free.
With each tool I started using, I grew to learn they weren't bad things - they were great! With the wheelchair I could finally go to the mall or anywhere else I wanted.
But the obstacle was returning to places where people hadn't seen me in awhile. Often the reaction from those people was one of sympathy - my MS was worse. What they failed to see was the freedom I was gaining.
Because of varied reactions, I chose not to return to see many people with whom I grew up. I didn't want the stares of pity, or looks that something bad had happened when in reality, I was more free.
In making this decision, I realize how many people I did not see for a long time, like Uncle Harry. I never knew how they would react, so I missed a lot.
Now Uncle Harry is gone and I will decide whether to go to his funeral, because everyone will be there who grew up with me. So I asked a good friend if she thought I should go. "Absolutely," she said. "You need closure."
"But what about all those people?"
"They don't matter."
She right. I will go back. And perhaps, on other occasions, I will go back again.
Peace.
He would always stop to visit once I graduated from high school, moved away from home, and came back. My parents always told me that he would ask about me.
I was diagnosed with MS.
For awhile, you couldn't tell, or I could hide it by standing still. Eventually I used a walking stick, then a leg brace, then a wheelchair (due to being pregnant), then my daughter's stroller, then a walker, and usually a combo of things.
The tricky part is when I would add something. When I added the brace, it was emotional and I remember my doctor asking me if I was ok and if I was ready for this. This doctor really understands me - I can't hide my emotions like I can for most people.
I got the brace and let it sit in my closet. I used to do a big walk and there was a steep hill that used to frighten me. One day I decided to try using the brace. And suddenly the hill was no longer frightening - I was free.
With each tool I started using, I grew to learn they weren't bad things - they were great! With the wheelchair I could finally go to the mall or anywhere else I wanted.
But the obstacle was returning to places where people hadn't seen me in awhile. Often the reaction from those people was one of sympathy - my MS was worse. What they failed to see was the freedom I was gaining.
Because of varied reactions, I chose not to return to see many people with whom I grew up. I didn't want the stares of pity, or looks that something bad had happened when in reality, I was more free.
In making this decision, I realize how many people I did not see for a long time, like Uncle Harry. I never knew how they would react, so I missed a lot.
Now Uncle Harry is gone and I will decide whether to go to his funeral, because everyone will be there who grew up with me. So I asked a good friend if she thought I should go. "Absolutely," she said. "You need closure."
"But what about all those people?"
"They don't matter."
She right. I will go back. And perhaps, on other occasions, I will go back again.
Peace.
Wednesday, September 8, 2010
Musical memories
Ahhh... those musical memories.
A song posted on Facebook brought them back...
College years
Journey's "Don't Stop Believing" - played at our dorm or apartment and Ian told me he was so glad I had the Journey CD, apparently because of our musical selection, or maybe he loved Journey...
The musical selection...
had a lot of Madonna in it - which our cross country coach hated - the same guy who posted the Journey song on Facebook. So we would make him listen to it on the way to meets and he would moan...
or there was U2...
when I wanted to go on a 10 mile run but didn't know the way, so coach was supposed to run with me, but he ate too much brunch (or something) and so drove his car behind me, loudly playing a new U2 song, repeatedly. Perhaps he just wanted to listen to U2 rather than run?
or there was Steely Dan...
never heard of them, but half our team went to their concert because Coach loved them, and then it rained and was cold.
But these musical memories are wonderful.
Perhaps they'e some of my best memories from my time at Kenyon.
I never did get to see Coach dance on a table as he was rumored to have done.
And I think the songs were part of my "MK" nickname, as I would get wrapped up in music.
Fun times.
A song posted on Facebook brought them back...
College years
Journey's "Don't Stop Believing" - played at our dorm or apartment and Ian told me he was so glad I had the Journey CD, apparently because of our musical selection, or maybe he loved Journey...
The musical selection...
had a lot of Madonna in it - which our cross country coach hated - the same guy who posted the Journey song on Facebook. So we would make him listen to it on the way to meets and he would moan...
or there was U2...
when I wanted to go on a 10 mile run but didn't know the way, so coach was supposed to run with me, but he ate too much brunch (or something) and so drove his car behind me, loudly playing a new U2 song, repeatedly. Perhaps he just wanted to listen to U2 rather than run?
or there was Steely Dan...
never heard of them, but half our team went to their concert because Coach loved them, and then it rained and was cold.
But these musical memories are wonderful.
Perhaps they'e some of my best memories from my time at Kenyon.
I never did get to see Coach dance on a table as he was rumored to have done.
And I think the songs were part of my "MK" nickname, as I would get wrapped up in music.
Fun times.
Monday, September 6, 2010
Why is healthcare reform important?
This posting goes with the previous posting on healthcare back one or two entries (not religious). Was the point of doing that work so I could get my blog out on a site viewed by many? No, although I was excited. But what is more exciting is seeing the GOOD in the health care reform, seeing some support, rather than just hearing the flaws of the legislation.
I went to a talk on health care reform at the National ADA Symposium this summer and the first question was for people to raise their hand if they were excited about the legislation. Not many hands were shown - no one knew what was in the bill. 2.5 hours later, everyone was excited. But where were we to take this? How were we get the word out about the GOOD parts of the legislation, of which there are many? How could people learn about it? That was one reason for my blog.
On the way to work one morning I listened as NPR dispelled myths about the legislation, one of which was that people thought everyone was getting a microchip implanted in them as part of health care reform! Not many people have read the legislation, so it is easy to start things like this. I've read it - not the whole thing, but I have read perhaps enough to be dangerous.
Why are the parts I listed important?
Coverage for people with pre-existing conditions.
I've been told I should start a consulting company. I don't think I'll ever do that, but if I wanted to do so, I couldn't. I couldn't get medical insurance. In 2014 this will change. Then people who want to open their own consulting companies can, and they will get coverage. I think I cost the system a lot less than some people who do not have a disability. My disability, however, does cost ME a lot, not the system. Braces, wheelchairs, walkers, lifts, hand controls, handcycle, skiing, etc. - not all paid by insaurance.
Independent living.
People with disabilities want to work. They want to contribute to society. Society often is not ready for this. They want to either pity people with disabilities, or think people with disabilities are just obnoxiou. People are frequently shocked that I do work and they think it's because I have to. No - I have passions I'm pursuing and I enjoy working. To work, many people may need a bit of extra help. I'm lucky to have an awesome husband who helps, but some people are not that lucky. The legislation addresses this. It's important to give people their independence. If people get a bit of help to go back to work, then they go off government assistance, contribute to society, are independent, and are much happier (and happiness is key). I have trouble seeing how this is bad. Helping people achieve independence is much less costly than the alternatives.
Accessible medical equipment.
If you do not use a wheelchair, go borrow one and take it to the doctor. Depending on where you go, you may be surprised at what you cannot access. Is there a lower exam table, because you can't get up on a higher one? Can a woman in a wheelchair get a mammogram or is the equipment too high? Is there a scale for someone who uses a wheelchair? Yes, some of this may be expensive. But what if we look at how many people do not go to the doctor, get a mammogram, or get weighed due to mobility impairments? What's the result of these possibilities? Diseases may be diagnosed later, or perhaps someone develops diabetes or a heart condition from being overweight. These things will be more expensive than getting equipment.
Cultural competent training.
This will occur - it means providers will be trained on how to interact with people with disabilities. This is huge - when providers are not trained, then do people want to go see them? No - it's uncomfortable. And what are the consequences? See the previous paragraph.
Health disparities.
Data is often collected for race, ethnicity, and language preference. What if this is coupled with disability? I bet the differences become greater. But in general, data is not collected, so we can't confirm the consequences I discuss above. It seems maybe things could be worse than we are guessing. Maybe things are better. We need data to determine this. Let's start gathering it.
Lastly, beyond the economics of everything, it just seems like the right thing to do. Medical care for everyone. Inclusion again.
And...
Peace.
I went to a talk on health care reform at the National ADA Symposium this summer and the first question was for people to raise their hand if they were excited about the legislation. Not many hands were shown - no one knew what was in the bill. 2.5 hours later, everyone was excited. But where were we to take this? How were we get the word out about the GOOD parts of the legislation, of which there are many? How could people learn about it? That was one reason for my blog.
On the way to work one morning I listened as NPR dispelled myths about the legislation, one of which was that people thought everyone was getting a microchip implanted in them as part of health care reform! Not many people have read the legislation, so it is easy to start things like this. I've read it - not the whole thing, but I have read perhaps enough to be dangerous.
Why are the parts I listed important?
Coverage for people with pre-existing conditions.
I've been told I should start a consulting company. I don't think I'll ever do that, but if I wanted to do so, I couldn't. I couldn't get medical insurance. In 2014 this will change. Then people who want to open their own consulting companies can, and they will get coverage. I think I cost the system a lot less than some people who do not have a disability. My disability, however, does cost ME a lot, not the system. Braces, wheelchairs, walkers, lifts, hand controls, handcycle, skiing, etc. - not all paid by insaurance.
Independent living.
People with disabilities want to work. They want to contribute to society. Society often is not ready for this. They want to either pity people with disabilities, or think people with disabilities are just obnoxiou. People are frequently shocked that I do work and they think it's because I have to. No - I have passions I'm pursuing and I enjoy working. To work, many people may need a bit of extra help. I'm lucky to have an awesome husband who helps, but some people are not that lucky. The legislation addresses this. It's important to give people their independence. If people get a bit of help to go back to work, then they go off government assistance, contribute to society, are independent, and are much happier (and happiness is key). I have trouble seeing how this is bad. Helping people achieve independence is much less costly than the alternatives.
Accessible medical equipment.
If you do not use a wheelchair, go borrow one and take it to the doctor. Depending on where you go, you may be surprised at what you cannot access. Is there a lower exam table, because you can't get up on a higher one? Can a woman in a wheelchair get a mammogram or is the equipment too high? Is there a scale for someone who uses a wheelchair? Yes, some of this may be expensive. But what if we look at how many people do not go to the doctor, get a mammogram, or get weighed due to mobility impairments? What's the result of these possibilities? Diseases may be diagnosed later, or perhaps someone develops diabetes or a heart condition from being overweight. These things will be more expensive than getting equipment.
Cultural competent training.
This will occur - it means providers will be trained on how to interact with people with disabilities. This is huge - when providers are not trained, then do people want to go see them? No - it's uncomfortable. And what are the consequences? See the previous paragraph.
Health disparities.
Data is often collected for race, ethnicity, and language preference. What if this is coupled with disability? I bet the differences become greater. But in general, data is not collected, so we can't confirm the consequences I discuss above. It seems maybe things could be worse than we are guessing. Maybe things are better. We need data to determine this. Let's start gathering it.
Lastly, beyond the economics of everything, it just seems like the right thing to do. Medical care for everyone. Inclusion again.
And...
Peace.
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