For many years now, I have followed what people have to say about specialty drugs - they're the ones that hit the news - the ones taken by people with things like MS, almost as if MS is a choice disease, as if people think there's an alternative to anything that can help. They are, simply put, expensive. That's why they tend to hit the news. Ampyra is a relatively cheaper drug.
("Hey Mom, do you realize I've been standing against the island in the kitchen for 15 minutes now? That's strange. Think it could be Ampyra? It's only been 2 days, but I never stood here after work like this.")
Specialty drugs are expensive - a few cost over $50k. There are specialty drugs for many other diseases besides MS, and the drugs for the other diseases are expensive as well. Typically, specialty drugs are used to slow the progression of diseases - diseases that are not very common, relative to diseases like diabetes and asthma. So although specialty drugs impact the healthcare system, they aren't the most major thing driving expense, since relatively "few" people have the diseases and not all people with those diseases take the specialty drugs.
(Well, here I am after 4 months of Ampyra, at the track. I don't remember a track being this big, but I walked around it, which took an hour, but I couldn't walk this far before Ampyra. Who knew life with MS could get better?)
Yet insurance companies have found ways to charge, say, $250 per month supply, or the new thing is 25%, for these specialty drugs. I wonder, let's see, how much do people really want these drugs / how much can people really afford for these? If we charge enough, perhaps people will go off them, and then what? That's what people are discussing... well, people who are not on the medications, or know someone who is on one. The other group is talking a bit differently, about how they need these medications and it's not their choice.
("So, I need my prescription filled by Friday. That's when I run out. Should I go check into the hospital if you can't get this medication to me?" That was me, with a new insurance company, who fought covering the drug, even though it has been approved by the FDA, and even though they cover Viagra, etc. I've been on Ampyra for almost 3 years. I am much better in so many ways. I just feel better. If I stop taking it, I will crash. This won't happen to everyone and you can't place a monetary value on it. It's quality of life. For anyone reading this, how much do you value what you are able to do? Can you put a dollar amount on the ability to hold a pen, to write? Can you put a dollar amount to the ability to get up every morning? Can you? How much is it worth?)
Physicians tell patients that patients with things like MS must be on one of the specialty (expensive) drugs. Insurers, at a minimum, say patients need a pre-authorization from their provider to be on them. Then insurers may have other requirements as well, which to me seems like insurers are trying to also play the role of provider, which I believe is wrong. To this end, insurers have created tiers of drugs, which is how much patients pay. The patient contribution has increased and is often $250 or 25% per month. When this first happened, the new contributions were in fine print so when patients came to pick up their normally $20 medication, they were shocked. Always read that fine print!
(Let me think... do I want to walk? Yes, I want to walk! That $250 or 25% is just cruel. Quite honestly, I live a very healthy lifestyle. I don't have risk factors that seem responsible for some other diseases. So, I don't get it. It's not like this is my fault, or I could have done something differently to avoid it all.)
The media has a significant role. They report that wow, new drugs are available! Then the media reports that wow, the new drugs are expensive! Various people, insurers, policy types, ..., then start to voice questions on if specialty drugs are worth the cost... why do drug companies charge so much... So there are all these people - physicians, drug manufacturers, insurance companies, policy people, all discussing this... They can be in so many places doing this. It is assumed, it seems, that during these talks, the main "player" is missing, and no one notices the missing "player."
So what about that missing "player?" That would be (weird drum roll), the patient! While everyone has been discussing the specialty drugs, the patients have been listening (often in the same room where it is assumed no one is on a specialty medication - can you say awkward?!!). Patients are stuck. Patients weigh information, and are stuck in a game where providers say they must, insurers say ok but we want $250 or more, and different people ask about outcomes. Patients just want the best quality of life they can have for as long as possible. Ideas on how to measure quality of life for as long as possible in actual dollars?
(I think the media ought to run a story where they interview patients on being stuck, rather than on cheering for the new drugs and then giving their prices in a different story.)
Criticism is often targeted toward drug manufacturers... why do they charge so much? I do wonder the same thing. But insurance companies? Seems a way like the game "chicken," where 2 people head straight toward each other to see who will move first. Are the drug companies going to budge? No. Are the insurance companies going to budge? No. The people taking these drugs are left right in the middle. People will say they don't mean anything against the people taking the drugs, but that's pathetic with this "chicken" game happening. So I'm going out on a limb and saying people taking specialty drugs are caught in the middle, forced to make difficult decisions they shouldn't have to make, and feeling like there is some kind of target on them.
(I've been on Ampyra almost 3 years now and I don't plan on stopping it. I feel good. It's summer and hot, but things could be worse. I may have to speak up at some point, in a situation that already feels awkward. Some day, feelings of frustration are just going to come out. And then, I will no longer be anonymous in the room where people assume no one in the room is on one of the specialty medications.)
Peace.
Sunday, June 9, 2013
Saturday, May 18, 2013
Children and church
When I was growing up and we, as a family, went to church, we were expected to sit quietly, pay attention until the sermon, write on little pieces of paper during the sermon, and then pay attention after the sermon. What really happened was this. My mom would give us each 2 "Tic Tacs" to eat (breath fresheners) before we got to church. We would then rotate accusing each other of hiding the Tic Tacs for future consumption until we got to church. Once in our seats, whoever managed to successfully store the Tic Tac without being caught would occasionally open their mouth to show the other 2 siblings their success. This was the activity before the sermon. If no one had Tic Tacs, we would try to make each other laugh (to get someone in trouble) before the sermon. After the sermon, we would imitate the minister who was trying to sing the part at the beginning of Communion. This was great fun! We had to do this without being caught - again, part of the object was to get siblings to laugh, thus getting them in trouble. The point here? We weren't paying attention, at all. We appeared to be 3 really good kids in church. My brothers might have different memories.
Fast forward to my daughter going to church. When she was a baby, we sat outside the sanctuary (the main area of the church) because if she cried, I thought I'd be too slow to get out. As she got a little bit older, we went inside the sanctuary and she would play. She was usually quiet. I'm not sure if her playing bothered people or not. Of course she wasn't participating and I remember asking the pastor of our church at that time about her inability to pay any attention. He surprised me by telling me I would be surprised, that even when playing, she was picking up things. He said his son was much the same way but in second grade, the pastor realized that his son (who is now an adult), had learned, by heart, all the parts of the service. So I went with this. He was right.
By kindergarten, my daughter wanted to take Communion. We talked about it. She knew surprisingly more than I would have guessed, so she started taking Communion. And she kept playing. At random points she would ask questions about the sermon, or about how the service went. At some point, she wanted to follow along with the service. Then she would go back to playing. Via playing and awesome Sunday School teachers, she just may know more about christianity than I do.
At one point she announced she would like a part in the service, because the older kids had a part, but the younger kids didn't. A little while after that, younger kids started saying the very ending line to the service into the microphone. She had a part. She kept playing. Someone informed me that since she was taking Communion, she should really be following that part of the service. Kids don't need bulletins to follow. She was playing and listening. She has all the parts of Communion memorized. She learned them while playing.
Really recently, she asked to be an acolyte. And amazingly, she got her wish. She's pretty bold, and doesn't hesitate to ask for things. Her friends joined her and were trained to be acolytes. They're between second and fourth grades. They had been playing. Now they are acolytes. When I started telling my daughter to pay attention to what she needed to do when she got training, she informed me that she already knew. In fact, she informed me she had picked the robe and cross she would wear! She had already asked the pastor what was behind the altar and he had showed her. When I asked if she knew what things she was to do, she rattled them off - she knew more about being an acolyte than me. "Mom, I've been watching them (other acolytes) for awhile now."
So imagine that! Everyone assumed she and her friends have not been paying attention and have instead been playing. In reality, she's been playing and absorbing. She knew what the acolytes do.
Now, if only these kids would be quiet and pay attention in church! And while they are at it, could they follow the church service like we used to do? I mean (sarcasm coming), then they could work on getting each other to laugh, and maybe they could find some distraction like Tic Tacs. And then, as a bonus, they would be so distracted in getting each other to laugh, that they would learn much less about the service than if we let them play. Excellent! Not!!
In between services, my daughter is very comfortable with the church. I can't chase her everywhere. I know she has probably done more running and yelling than she should. But then again, she and her friends are comfortable in the church. It's home to them, or a second home. They have each other and are good friends. My daughter will be a serious acolyte and then change clothes and play with her friends. I really wish I had that when I was a kid, but I didn't. If only these kids weren't running around the church and also seeing what is behind the altar, then they would be good. They could stay with their parents after the service like we did, go to coffee hour, stay close to their parents, not talk to any kids or build any relationships. Excellent! Not!!
In church, we talk about people who leave in their 20s. We talk about parents who do not necessarily come back. What if these parents who do not come back, knew there is a place for them as well as for their kids? What if parents knew their kids could play in church, and in playing, their kids would also be learning? What if parents knew that church could feel like home to their kids, that their kids, because church is home, could build confidence that cannot be built the same way in other places? It's so true.
Recently I was talking with someone who has been to our church 3 times this year, and I asked the person about kids, how things are different now, how kids are playing, how perhaps kids now make noise. His answer surprised me. His observation was that that the adults made much more noise than the kids. "When I go into church, I want it to be quiet. But there are all these adults before the service starts, making a bunch of noise. The kids? I don't even notice them. Sure, there's a bit of noise during the service. But it's nothing compared to the adults."
Children and church. If we want to continue to see families come to church, especially young families with young children, we have to be accepting. We have to know that in playing, there is learning. We can't judge their behavior, because in it, there is learning. We have to have church be one of the only places where children can still feel safe.
In my mind, I think God wants children learning, involved, and feeling safe. I very much doubt God cares how the children have all this happening. And I think God wants people to support this.
So if you do go to church, listen for those young voices. They are beautiful. They are learning.
Peace.
Fast forward to my daughter going to church. When she was a baby, we sat outside the sanctuary (the main area of the church) because if she cried, I thought I'd be too slow to get out. As she got a little bit older, we went inside the sanctuary and she would play. She was usually quiet. I'm not sure if her playing bothered people or not. Of course she wasn't participating and I remember asking the pastor of our church at that time about her inability to pay any attention. He surprised me by telling me I would be surprised, that even when playing, she was picking up things. He said his son was much the same way but in second grade, the pastor realized that his son (who is now an adult), had learned, by heart, all the parts of the service. So I went with this. He was right.
By kindergarten, my daughter wanted to take Communion. We talked about it. She knew surprisingly more than I would have guessed, so she started taking Communion. And she kept playing. At random points she would ask questions about the sermon, or about how the service went. At some point, she wanted to follow along with the service. Then she would go back to playing. Via playing and awesome Sunday School teachers, she just may know more about christianity than I do.
At one point she announced she would like a part in the service, because the older kids had a part, but the younger kids didn't. A little while after that, younger kids started saying the very ending line to the service into the microphone. She had a part. She kept playing. Someone informed me that since she was taking Communion, she should really be following that part of the service. Kids don't need bulletins to follow. She was playing and listening. She has all the parts of Communion memorized. She learned them while playing.
Really recently, she asked to be an acolyte. And amazingly, she got her wish. She's pretty bold, and doesn't hesitate to ask for things. Her friends joined her and were trained to be acolytes. They're between second and fourth grades. They had been playing. Now they are acolytes. When I started telling my daughter to pay attention to what she needed to do when she got training, she informed me that she already knew. In fact, she informed me she had picked the robe and cross she would wear! She had already asked the pastor what was behind the altar and he had showed her. When I asked if she knew what things she was to do, she rattled them off - she knew more about being an acolyte than me. "Mom, I've been watching them (other acolytes) for awhile now."
So imagine that! Everyone assumed she and her friends have not been paying attention and have instead been playing. In reality, she's been playing and absorbing. She knew what the acolytes do.
Now, if only these kids would be quiet and pay attention in church! And while they are at it, could they follow the church service like we used to do? I mean (sarcasm coming), then they could work on getting each other to laugh, and maybe they could find some distraction like Tic Tacs. And then, as a bonus, they would be so distracted in getting each other to laugh, that they would learn much less about the service than if we let them play. Excellent! Not!!
In between services, my daughter is very comfortable with the church. I can't chase her everywhere. I know she has probably done more running and yelling than she should. But then again, she and her friends are comfortable in the church. It's home to them, or a second home. They have each other and are good friends. My daughter will be a serious acolyte and then change clothes and play with her friends. I really wish I had that when I was a kid, but I didn't. If only these kids weren't running around the church and also seeing what is behind the altar, then they would be good. They could stay with their parents after the service like we did, go to coffee hour, stay close to their parents, not talk to any kids or build any relationships. Excellent! Not!!
In church, we talk about people who leave in their 20s. We talk about parents who do not necessarily come back. What if these parents who do not come back, knew there is a place for them as well as for their kids? What if parents knew their kids could play in church, and in playing, their kids would also be learning? What if parents knew that church could feel like home to their kids, that their kids, because church is home, could build confidence that cannot be built the same way in other places? It's so true.
Recently I was talking with someone who has been to our church 3 times this year, and I asked the person about kids, how things are different now, how kids are playing, how perhaps kids now make noise. His answer surprised me. His observation was that that the adults made much more noise than the kids. "When I go into church, I want it to be quiet. But there are all these adults before the service starts, making a bunch of noise. The kids? I don't even notice them. Sure, there's a bit of noise during the service. But it's nothing compared to the adults."
Children and church. If we want to continue to see families come to church, especially young families with young children, we have to be accepting. We have to know that in playing, there is learning. We can't judge their behavior, because in it, there is learning. We have to have church be one of the only places where children can still feel safe.
In my mind, I think God wants children learning, involved, and feeling safe. I very much doubt God cares how the children have all this happening. And I think God wants people to support this.
So if you do go to church, listen for those young voices. They are beautiful. They are learning.
Peace.
Sunday, May 5, 2013
Experiencing the MS Walk (2013)
Yesterday was the 2013 MS Walk, and many people have asked me how it went.
It was the perfect day, or close to it, for people who have MS to have the walk. It wasn't too hot; it was sunny (but there were enough shady spots and enough cooler air to make the sun ok).
When my mom and I arrived (my daughter had a soccer game), I heard some people saying, hmm, I wonder what is happening - is it Cinco de Mayo? That was a little humerous given that, although there were plenty of people without things like wheelchairs, there were a lot more electric wheelchairs, wheelchairs, walkers, walking sticks, etc, than you would expect at an event.
Our team was smaller this year, mainly because people with kids who usually walk had things happening, like my daughter's soccer game ("Mom, since I can't go, can you make sure to get me some free stuff?"). We found each other really easily - normally it's hard to find everyone - and we had a tent where we then hung out before and after the walk.
It actually was ok to have a smaller team for a year. I do like having a big team, but I hadn't seen the other people who came in awhile, so that was nice. Last year my friend broke her leg in the days before the race, so this year she returned and I got to see her, her parents, and her husband (who can't always make it). And I got to see my other friends too - those I hadn't seen since leaving my old job. And then of course it was great to have my parents there. Community can be big, small, or in between, and this small community was really nice and relaxed.
I started the walk a bit early so I could walk without being in the middle of a crowd, and then my dad and I waited for everyone else to reach us (where I decided to stop and wheel). 3 people then did the longer route so we all split up for a bit but then met at the tent. I walked the end of the walk and I suppose the difference this year was that, when I crossed the finish line, I wasn't totally dead.
So that's the basic description of the walk. It was smaller this year in terms of the number of people, and I don't know why. In a sense that was nice because I could find people, but then again, I'm not sure if it meant a dip in fundraising.
(Sidenote: thanks to all who have donated; if you still want to do so, here's the link to get you to the right spot for that:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762 -------- I need less than $100 to get to $4,000 because people have also given me checks)
I did something new this year. After the walk, I was at the Ampyra tent and then walked, on the grass, back to our tent. I don't walk on grass - I really don't. But the Bioness has changed that.
So many of us come together for this event every year. It's community. At the same time, every person's MS is different, and thus, every person, in a sense, is alone with their MS.
Right now I feel like my MS is this totally strange thing, and it's different; in fact, neurologists scratch their heads about it. I saw another neurologist on Friday and he said, like most neurologists will say, "this is very strange that you have no lesions in your brain." Yup, but I have other markers, and I have had attacks, and this looks like MS to me. And then, Ampyra is just not supposed to work like that. "It's a symptom-management drug, and you should also be on a disease-modifying drug." But the thing is, I have trouble with those drugs. Several made me depressed and gave me skin sores. One almost killed me. After that, who would want to try another? I haven't had an attack in almost 3 years, so somehow Ampyra has modified the course of my MS. But if it isn't MS, then it has modified the course of whatever I have, and the other stuff isn't worth depression, skin problems, and almost dying. I'll never forget the last time I took the drug that almost killed me - my chest got tight; I knew this could be a side effect, but the 3 hours of shaking afterward - I'll never forget that.
Back to the walk - community - but still, everyone is alone with their own MS, or whatever it is. For me, I lean on God then - I have yelled at God, cried to God, told God I'm not giving up and could God please get me through (fill in the blank)?, wondered why my MS seems so different, asked God what therapy I should take (God didn't answer that one - really God, could you work on giving me some answers?), gone on walks and felt I was leaning on God, sat on my deck and thanked God, took breaks during my walks and listened for God, sat on my deck thanking God and feeling tears on my cheeks. It's not that I feel a great presence of God at all these times at all, and perhaps that's a big part of believing - handing things to God, thanking God, etc.
It all goes together... the walk... community... alone... God (for me)...
Thanks be to God.
Peace.
It was the perfect day, or close to it, for people who have MS to have the walk. It wasn't too hot; it was sunny (but there were enough shady spots and enough cooler air to make the sun ok).
When my mom and I arrived (my daughter had a soccer game), I heard some people saying, hmm, I wonder what is happening - is it Cinco de Mayo? That was a little humerous given that, although there were plenty of people without things like wheelchairs, there were a lot more electric wheelchairs, wheelchairs, walkers, walking sticks, etc, than you would expect at an event.
Our team was smaller this year, mainly because people with kids who usually walk had things happening, like my daughter's soccer game ("Mom, since I can't go, can you make sure to get me some free stuff?"). We found each other really easily - normally it's hard to find everyone - and we had a tent where we then hung out before and after the walk.
It actually was ok to have a smaller team for a year. I do like having a big team, but I hadn't seen the other people who came in awhile, so that was nice. Last year my friend broke her leg in the days before the race, so this year she returned and I got to see her, her parents, and her husband (who can't always make it). And I got to see my other friends too - those I hadn't seen since leaving my old job. And then of course it was great to have my parents there. Community can be big, small, or in between, and this small community was really nice and relaxed.
I started the walk a bit early so I could walk without being in the middle of a crowd, and then my dad and I waited for everyone else to reach us (where I decided to stop and wheel). 3 people then did the longer route so we all split up for a bit but then met at the tent. I walked the end of the walk and I suppose the difference this year was that, when I crossed the finish line, I wasn't totally dead.
So that's the basic description of the walk. It was smaller this year in terms of the number of people, and I don't know why. In a sense that was nice because I could find people, but then again, I'm not sure if it meant a dip in fundraising.
(Sidenote: thanks to all who have donated; if you still want to do so, here's the link to get you to the right spot for that:
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=20762 -------- I need less than $100 to get to $4,000 because people have also given me checks)
I did something new this year. After the walk, I was at the Ampyra tent and then walked, on the grass, back to our tent. I don't walk on grass - I really don't. But the Bioness has changed that.
So many of us come together for this event every year. It's community. At the same time, every person's MS is different, and thus, every person, in a sense, is alone with their MS.
Right now I feel like my MS is this totally strange thing, and it's different; in fact, neurologists scratch their heads about it. I saw another neurologist on Friday and he said, like most neurologists will say, "this is very strange that you have no lesions in your brain." Yup, but I have other markers, and I have had attacks, and this looks like MS to me. And then, Ampyra is just not supposed to work like that. "It's a symptom-management drug, and you should also be on a disease-modifying drug." But the thing is, I have trouble with those drugs. Several made me depressed and gave me skin sores. One almost killed me. After that, who would want to try another? I haven't had an attack in almost 3 years, so somehow Ampyra has modified the course of my MS. But if it isn't MS, then it has modified the course of whatever I have, and the other stuff isn't worth depression, skin problems, and almost dying. I'll never forget the last time I took the drug that almost killed me - my chest got tight; I knew this could be a side effect, but the 3 hours of shaking afterward - I'll never forget that.
Back to the walk - community - but still, everyone is alone with their own MS, or whatever it is. For me, I lean on God then - I have yelled at God, cried to God, told God I'm not giving up and could God please get me through (fill in the blank)?, wondered why my MS seems so different, asked God what therapy I should take (God didn't answer that one - really God, could you work on giving me some answers?), gone on walks and felt I was leaning on God, sat on my deck and thanked God, took breaks during my walks and listened for God, sat on my deck thanking God and feeling tears on my cheeks. It's not that I feel a great presence of God at all these times at all, and perhaps that's a big part of believing - handing things to God, thanking God, etc.
It all goes together... the walk... community... alone... God (for me)...
Thanks be to God.
Peace.
Friday, May 3, 2013
Half full
Since I changed jobs and got new health insurance, I've been to a couple different providers. I went back to physical therapy at the place where I got my Bioness. The physical therapist (PT) who used to work with me there has another job, so I had a new PT. Any new provider makes me nervous - what if they aren't any good? It's never happened with a PT.
I went into this appointment because I'm not quite sure what to do next. I know what I would like to do next, but I don't know how to get there, and a neurologist I saw didn't exactly inspire me. I guess I was feeling like this is it, because he said I shouldn't be continuing to get better. You'd think it's the placebo effect, but a co-worker said, "well, that's one hell of a placebo effect!"
So I walked in and what I love about this place is that no one ever looks at me like I am a total freak... to them, I am walking in as if I am anyone else. The PT went through my whole case with me. The thing about the PTs with whom I have worked is this: they are always positive and encouraging - they point out the positive, not the negative. The glass is always at least half full.
She tested me on many things, pointing out, "see, that works," as opposed to what doesn't work, which seems like the focus of many.
"See, I bend when I walk," I said. She explained why and what kinds of things might help.
Now if you are a person without a disability, or with a disability, but you can walk and get up, do this: go get a chair. I realize some of you may try this after reading the whole blog and that's ok, but it's just more effective if you try what I say now.
So, you have a chair. Sit. Good dog. That is not very funny but I couldn't resist.
Now, your knees should form 90 degree angles.
Now................ stand up! Easy, right. Sit back down. Good dog. (not funny)
Now, move your feet 3 o 5 inches awat from where they were previously. Now stand. It should be more difficult to get upnow, but try to get up. Now you are using your quads to get up, and it's more difficult.
For the past few years I've been getting up with my legs way out. The PT discovered this for me and said "so much is involved in standing. I agree.
So now I stand differently and know I can do it. You use your calf muscles. I am optimistic. I have goals. I know I need to go back to PT regularly.
It's all the small stuff around us, and the small stuff hopefully turns into big stuff.
It's truly a wonderful how things are working, as God smiles.
Peace..
I went into this appointment because I'm not quite sure what to do next. I know what I would like to do next, but I don't know how to get there, and a neurologist I saw didn't exactly inspire me. I guess I was feeling like this is it, because he said I shouldn't be continuing to get better. You'd think it's the placebo effect, but a co-worker said, "well, that's one hell of a placebo effect!"
So I walked in and what I love about this place is that no one ever looks at me like I am a total freak... to them, I am walking in as if I am anyone else. The PT went through my whole case with me. The thing about the PTs with whom I have worked is this: they are always positive and encouraging - they point out the positive, not the negative. The glass is always at least half full.
She tested me on many things, pointing out, "see, that works," as opposed to what doesn't work, which seems like the focus of many.
"See, I bend when I walk," I said. She explained why and what kinds of things might help.
Now if you are a person without a disability, or with a disability, but you can walk and get up, do this: go get a chair. I realize some of you may try this after reading the whole blog and that's ok, but it's just more effective if you try what I say now.
So, you have a chair. Sit. Good dog. That is not very funny but I couldn't resist.
Now, your knees should form 90 degree angles.
Now................ stand up! Easy, right. Sit back down. Good dog. (not funny)
Now, move your feet 3 o 5 inches awat from where they were previously. Now stand. It should be more difficult to get upnow, but try to get up. Now you are using your quads to get up, and it's more difficult.
For the past few years I've been getting up with my legs way out. The PT discovered this for me and said "so much is involved in standing. I agree.
So now I stand differently and know I can do it. You use your calf muscles. I am optimistic. I have goals. I know I need to go back to PT regularly.
It's all the small stuff around us, and the small stuff hopefully turns into big stuff.
It's truly a wonderful how things are working, as God smiles.
Peace..
Wednesday, April 24, 2013
One week
It has just over one week since lives were changed forever at the Boston Marathon.
Lives forever changed in so many ways:
1) Lives lost.
2) Lives with new disabilities inserted, though nothing was done wrong by those who now have the disabilities. Isn't that often the case? Disability enters life without warning, through no fault of the person who “receives” disability?
3) Unmet dreams... those who didn’t finish due to the chaos.
Perhaps those who did not finish will return. But perhaps this was their shot at their dream. Perhaps they are left feeling as though they were so close to their dream, but they will never get it.
As I went through last week, though my life is not at all the same, memories came flooding back. Memories took me to the morning I awoke to legs feeling as though they had pins and needles all over them. Disability entered without warning, through no fault of mine. At that time, I thought I had slept wrong. Unmet dream of never running under 19 minutes, yet coming so close. So close, not ready for disability.
Sadness. Anger. Not at those who did this at Boston. Rather, sadness at disability robbing ability.
On Thursday, anger out of nowhere… why anger? Anger at those unmet dreams. I wasn’t done running yet. Ability taken from me too soon, not my fault. I wanted to tell everyone to just leave me alone, go away, I didn't want to talk.
People continue, move on, pursue new dreams, show disability isn’t an end. Then, out of nowhere, events bring back memories and tears.
To me, I wanted some people to disappear and let me be in my own space. Boston was not some "wow, let's hear what's happening now" random series of events. I personally don't care who did it. And it's a bad time to discuss guns and immigration. Time to turn off the news which now focuses on who. To me, now is about supporting those whose lives have been forever changed, and continuing to support them for perhaps their entire lives.
Give people space; you don't know who is needing it for whatever reason. Ask how people are and continue to ask, because disability can be forever.
Never forget. Disability. Boston. Connecticut. Aurora. Virginia. Columbine. Moments of pause.
And also, begin to heal, in whatever way that means.
Peace.
1) Lives lost.
2) Lives with new disabilities inserted, though nothing was done wrong by those who now have the disabilities. Isn't that often the case? Disability enters life without warning, through no fault of the person who “receives” disability?
3) Unmet dreams... those who didn’t finish due to the chaos.
Perhaps those who did not finish will return. But perhaps this was their shot at their dream. Perhaps they are left feeling as though they were so close to their dream, but they will never get it.
As I went through last week, though my life is not at all the same, memories came flooding back. Memories took me to the morning I awoke to legs feeling as though they had pins and needles all over them. Disability entered without warning, through no fault of mine. At that time, I thought I had slept wrong. Unmet dream of never running under 19 minutes, yet coming so close. So close, not ready for disability.
Sadness. Anger. Not at those who did this at Boston. Rather, sadness at disability robbing ability.
On Thursday, anger out of nowhere… why anger? Anger at those unmet dreams. I wasn’t done running yet. Ability taken from me too soon, not my fault. I wanted to tell everyone to just leave me alone, go away, I didn't want to talk.
People continue, move on, pursue new dreams, show disability isn’t an end. Then, out of nowhere, events bring back memories and tears.
To me, I wanted some people to disappear and let me be in my own space. Boston was not some "wow, let's hear what's happening now" random series of events. I personally don't care who did it. And it's a bad time to discuss guns and immigration. Time to turn off the news which now focuses on who. To me, now is about supporting those whose lives have been forever changed, and continuing to support them for perhaps their entire lives.
Give people space; you don't know who is needing it for whatever reason. Ask how people are and continue to ask, because disability can be forever.
Never forget. Disability. Boston. Connecticut. Aurora. Virginia. Columbine. Moments of pause.
And also, begin to heal, in whatever way that means.
Peace.
Thursday, April 11, 2013
Whoooooo _are_ you?
"Whoooo _are_ you?"
That's an owl, as I sat at a bridge close to our house, the resting place for walks I do from home. The owl seemed to be talking from the west, and he (or she) is always there, with his familiar sounds, asking who I am - it's always the same. As I sat there, I thought, I don't know who I am. Who am I? I thought I was a runner and an athlete. I think I'll always be an athlete. I think that pretty well defines me. I got a lot worse with MS, and then I have spent the past almost 3 years improving.
Who am I? I used to be somewhat of a disability spokesperson, but then I wanted to be in healthcare policy. I found my way there, and strangely, I no longer want to be the disability spokesperson. So then, who am I? I am Beth, simply Beth, and Beth is in her heart an athlete who loves to be outside, and who loves this new walking and equates some workouts with those of when I ran competitively. Beth never left.
So owl, I am Beth. And I had tears then because this is all so strange. Also, I was worried about being able to get Ampyra with new insurance, and it made me question myself, because I don't ever want to go backward again. I sat there and contemplated what, of all the trouble in getting Ampyra, was causing me to somewhat question my abilities, and to question why I was upset in a way that was different than just being able to get Ampyra. There was something more there, but what?
Then I left my resting spot by the bridge to go home. Had the owl moved? I was traveling east to get home. But the owl now seemed to have moved from the west, where I heard him on the bridge, to the east, continuing to ask "Who are you?" and I, irritated, thought, "Where are you and why do you keep questioning me?" right back at the owl. Then I heard a crow, squawking once, telling me "Go!" and as I reached a struggling point for me, on the uphill, almost home. And then a few small birds seemed to urgently whisper, "GO, Go, go." And then I was home. Going on walks for me brings with it all the sounds of nature, speaking to me through my imagination.
The next day I was on another walk. On that day, we had heard the part of the Bible where Thomas needs to see to believe. So we must believe. We must believe and yet we cannot see. Strangely, I translated this into the notion that I must believe in myself. So this walk wasw on a bike path. There are 2 ways to turn at the beginning of the path, and each leads to a bench, but I have never walked to the further bench (one way there is a closer bench; the other way there is a bench, but it is further). But if I was to believe in myself, I needed to go toward that further bench. So I went. By the time I reached it, I must have looked really stellar, because 2 people asked me if I needed help. Guess I didn't look stellar.
I sat on that bench and saw long brown grass swaying in the wind. There was a stream in front of me as well. This stream, I noticed, didn't hesitate. It was small, and moved slowly, but there was nothing in its way. Tears again. I think what has bothered me is the inability for certain people to believe in the possible power of Ampyra. It doesn't work for most people. So others question its ability to be helping me function this well. And that questioning is upsetting. I am not imagining this. It is reality.
I headed back to my car, thinking I just needed to believe in myself and ignore the doubters, the people who needed to see a bunch of data to believe (ironically, I normally need to see a bunch of data to believe). Pretty soon, much sooner than expected, I was almost to my car.
Along the way back, there were images and voices from the past - my imagination at work again. "Beth, you could have won that race, you know that, right?" (Coach Jean Ann) "Beth, here's how you do YBF. You're almost to the top of the (huge) hill, and you need to think to take 3 steps and then you are done. 1, 2, 3, done!" (the last small hill - Kelley) "Maintain! Maintain!!" (through the flat stretch - Coach Martin) "I got her, the girl from Poudre. She cut me off. I'm going to cut her off right here and then just go hard to the end. See I can push people off the path, too." (and later, between Coach Gomez and I, who pushed who?) "Someone has to win!!!" (Coach Luckasen)
And I was done, at my car. I believed in myself. I think that was a half mile, and I hadn't felt like doing anything that day. Those are the days of the best workouts - when beforehand, I just don't feel like working out.
Nature urges me on. Voices from the past tell me to win something. The Bible tells me to believe, and I guess I'm using that, too. I don't think God minds.
"I think 2 choices in this type of situation. You either give in or you fight it. I intend to fight." Annette Funicello
Thank you, Annette. Your spirit of persistence is right there, too.
Peace.
That's an owl, as I sat at a bridge close to our house, the resting place for walks I do from home. The owl seemed to be talking from the west, and he (or she) is always there, with his familiar sounds, asking who I am - it's always the same. As I sat there, I thought, I don't know who I am. Who am I? I thought I was a runner and an athlete. I think I'll always be an athlete. I think that pretty well defines me. I got a lot worse with MS, and then I have spent the past almost 3 years improving.
Who am I? I used to be somewhat of a disability spokesperson, but then I wanted to be in healthcare policy. I found my way there, and strangely, I no longer want to be the disability spokesperson. So then, who am I? I am Beth, simply Beth, and Beth is in her heart an athlete who loves to be outside, and who loves this new walking and equates some workouts with those of when I ran competitively. Beth never left.
So owl, I am Beth. And I had tears then because this is all so strange. Also, I was worried about being able to get Ampyra with new insurance, and it made me question myself, because I don't ever want to go backward again. I sat there and contemplated what, of all the trouble in getting Ampyra, was causing me to somewhat question my abilities, and to question why I was upset in a way that was different than just being able to get Ampyra. There was something more there, but what?
Then I left my resting spot by the bridge to go home. Had the owl moved? I was traveling east to get home. But the owl now seemed to have moved from the west, where I heard him on the bridge, to the east, continuing to ask "Who are you?" and I, irritated, thought, "Where are you and why do you keep questioning me?" right back at the owl. Then I heard a crow, squawking once, telling me "Go!" and as I reached a struggling point for me, on the uphill, almost home. And then a few small birds seemed to urgently whisper, "GO, Go, go." And then I was home. Going on walks for me brings with it all the sounds of nature, speaking to me through my imagination.
The next day I was on another walk. On that day, we had heard the part of the Bible where Thomas needs to see to believe. So we must believe. We must believe and yet we cannot see. Strangely, I translated this into the notion that I must believe in myself. So this walk wasw on a bike path. There are 2 ways to turn at the beginning of the path, and each leads to a bench, but I have never walked to the further bench (one way there is a closer bench; the other way there is a bench, but it is further). But if I was to believe in myself, I needed to go toward that further bench. So I went. By the time I reached it, I must have looked really stellar, because 2 people asked me if I needed help. Guess I didn't look stellar.
I sat on that bench and saw long brown grass swaying in the wind. There was a stream in front of me as well. This stream, I noticed, didn't hesitate. It was small, and moved slowly, but there was nothing in its way. Tears again. I think what has bothered me is the inability for certain people to believe in the possible power of Ampyra. It doesn't work for most people. So others question its ability to be helping me function this well. And that questioning is upsetting. I am not imagining this. It is reality.
I headed back to my car, thinking I just needed to believe in myself and ignore the doubters, the people who needed to see a bunch of data to believe (ironically, I normally need to see a bunch of data to believe). Pretty soon, much sooner than expected, I was almost to my car.
Along the way back, there were images and voices from the past - my imagination at work again. "Beth, you could have won that race, you know that, right?" (Coach Jean Ann) "Beth, here's how you do YBF. You're almost to the top of the (huge) hill, and you need to think to take 3 steps and then you are done. 1, 2, 3, done!" (the last small hill - Kelley) "Maintain! Maintain!!" (through the flat stretch - Coach Martin) "I got her, the girl from Poudre. She cut me off. I'm going to cut her off right here and then just go hard to the end. See I can push people off the path, too." (and later, between Coach Gomez and I, who pushed who?) "Someone has to win!!!" (Coach Luckasen)
And I was done, at my car. I believed in myself. I think that was a half mile, and I hadn't felt like doing anything that day. Those are the days of the best workouts - when beforehand, I just don't feel like working out.
Nature urges me on. Voices from the past tell me to win something. The Bible tells me to believe, and I guess I'm using that, too. I don't think God minds.
"I think 2 choices in this type of situation. You either give in or you fight it. I intend to fight." Annette Funicello
Thank you, Annette. Your spirit of persistence is right there, too.
Peace.
Monday, March 25, 2013
Don't ruin the dream
This entry is about a doctor appt I had today. But just 2 minutes ago, I got an email from a family friend on possibilities for training for my next walking goal. It is strange, but perfect timing, at the end of this particular day, encouraging me to keep striving for that goal.
I have a new job which is perfect for me. The only bad part was having to switch health insurance and not be able to see my favorite doctor, the doctor who advocated for me, the one who never gave up on me because he knew I wasn't going to give up, the one who told me to follow my dreams. And so I did. And I miss Dr. Mulica, or Count, as he is also called.
Today I had to go to a neurologist. Dr. Mulica is a rehabilitation doctor. I have never really found a neurologist I liked, but I needed to make sure my medications were refilled.
I told this doctor about how wonderful Ampyra has been and how I haven't had an MS attack in almost 3 years; how I am walking more; how I can now write with a regular pen. He was skeptical; I couldn't convince him. To him, not having an attack just meant my MS was no longer that which involved attacks, and it had nothing to do with Ampyra, despite the fact that I had about 20 years of regular attacks (when symptoms get extremely worse) for all of those 20 years, and despite the fact that they stopped completely when I started taking Ampyra. To him, Ampyra is only a symptom management medication. He didn't share in my excitement and said he only knew one other person who he said claimed dramatic improvement. Great.
Then he did a bunch of neurologic tests and I did fine with them; still there was no realization how much I had improved. And then there was "you know, you have never had lesions in you brain. You could have this other condition." Yes, but the fact is, I have been tested for this other disease and the test was negative. And the fact is I got stuck by a needle, right in the middle of my spinal cord, when I was 20 and alone at college, so they could take out fluid to confirm an MS diagnosis. I don't think I went through all of those diagnostic tests, which finally showed MS, to think this is something else. Looks like a duck, smells like a duck. It's a duck! It's MS, and if not, it's just Beth's disease, which looks like MS and smells like MS.
Recently I wrote a letter to the doctor who diagnosed me with MS, who told me not to lay down on the floor and die, who told me I could live a full and meaningful life. I needed to thank him for that advice. He wrote back and talked about how he used my case a lot, as an example of how important it is to listen to your patient, to really hear what they are saying.
And yet there I was, and this doctor today was not listening to me, but seemed stuck in a mindset that MS is a chronic disease that only worsens.
If we look at medicine these days, it seems there is so much reliance on groups of patients, putting people buckets, and not looking at the individuals. Certainly I cannot be different than anyone else; certainly since evidence doesn't show what I have experienced, then what I am experiencing cannot be real. Or can it?
I think back to when I breastfed, told people it helped me physically, and no one believed me. I wrote emails to have things taken off websites that discouraged women with MS from nursing. Other women must have been doing the same thing. Eventually websites changed. Eventually studies were done which showed what I had experienced - that my MS went into remission.
And here I am, again saying something that can't possibly be true. After an appointment like that, it's hard to walk away and be happy.
But then, as I was about to write this, I received the email I mentioned at the beginning, giving me ideas on how to keep improving, from a person who believes in me.
There are so many people who do believe in me; so many people who have encouraged me during the last almost 3 years of my life, where the improbable has occurred, so that it has been much larger than myself.
And if any doctors read this, please know how important it is to listen to your patients. Please, never give up on them. Please, encourage them. And please, tell them to follow their dreams, of which there are so many. Every person, every day, it's critical to believe, even if it all seems completely unrealistic and impossible.
Everyone deserves the chance to dream the impossible dream, and then to chase it, full speed ahead, surrounded by nothing but encouragement.
Peace.
I have a new job which is perfect for me. The only bad part was having to switch health insurance and not be able to see my favorite doctor, the doctor who advocated for me, the one who never gave up on me because he knew I wasn't going to give up, the one who told me to follow my dreams. And so I did. And I miss Dr. Mulica, or Count, as he is also called.
Today I had to go to a neurologist. Dr. Mulica is a rehabilitation doctor. I have never really found a neurologist I liked, but I needed to make sure my medications were refilled.
I told this doctor about how wonderful Ampyra has been and how I haven't had an MS attack in almost 3 years; how I am walking more; how I can now write with a regular pen. He was skeptical; I couldn't convince him. To him, not having an attack just meant my MS was no longer that which involved attacks, and it had nothing to do with Ampyra, despite the fact that I had about 20 years of regular attacks (when symptoms get extremely worse) for all of those 20 years, and despite the fact that they stopped completely when I started taking Ampyra. To him, Ampyra is only a symptom management medication. He didn't share in my excitement and said he only knew one other person who he said claimed dramatic improvement. Great.
Then he did a bunch of neurologic tests and I did fine with them; still there was no realization how much I had improved. And then there was "you know, you have never had lesions in you brain. You could have this other condition." Yes, but the fact is, I have been tested for this other disease and the test was negative. And the fact is I got stuck by a needle, right in the middle of my spinal cord, when I was 20 and alone at college, so they could take out fluid to confirm an MS diagnosis. I don't think I went through all of those diagnostic tests, which finally showed MS, to think this is something else. Looks like a duck, smells like a duck. It's a duck! It's MS, and if not, it's just Beth's disease, which looks like MS and smells like MS.
Recently I wrote a letter to the doctor who diagnosed me with MS, who told me not to lay down on the floor and die, who told me I could live a full and meaningful life. I needed to thank him for that advice. He wrote back and talked about how he used my case a lot, as an example of how important it is to listen to your patient, to really hear what they are saying.
And yet there I was, and this doctor today was not listening to me, but seemed stuck in a mindset that MS is a chronic disease that only worsens.
If we look at medicine these days, it seems there is so much reliance on groups of patients, putting people buckets, and not looking at the individuals. Certainly I cannot be different than anyone else; certainly since evidence doesn't show what I have experienced, then what I am experiencing cannot be real. Or can it?
I think back to when I breastfed, told people it helped me physically, and no one believed me. I wrote emails to have things taken off websites that discouraged women with MS from nursing. Other women must have been doing the same thing. Eventually websites changed. Eventually studies were done which showed what I had experienced - that my MS went into remission.
And here I am, again saying something that can't possibly be true. After an appointment like that, it's hard to walk away and be happy.
But then, as I was about to write this, I received the email I mentioned at the beginning, giving me ideas on how to keep improving, from a person who believes in me.
There are so many people who do believe in me; so many people who have encouraged me during the last almost 3 years of my life, where the improbable has occurred, so that it has been much larger than myself.
And if any doctors read this, please know how important it is to listen to your patients. Please, never give up on them. Please, encourage them. And please, tell them to follow their dreams, of which there are so many. Every person, every day, it's critical to believe, even if it all seems completely unrealistic and impossible.
Everyone deserves the chance to dream the impossible dream, and then to chase it, full speed ahead, surrounded by nothing but encouragement.
Peace.
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