We spent this past weekend at Rainbow Trails Lutheran Camp in Colorado, where there is a Labor Day retreat. Most people go to this to get away and relax - I do too. Each year I wonder if it will be as "magical" as in the past, and each year it is.
The past 2 years, I've gone to the retreat with some serious "issues," and I've found the retreat a place/way to hand the issues over to God, as much as possible, so I can just sleep better at night. This year I didn't have the same big issues. Something was/is bugging me; I'm not sure what it was/is, and I really didn't know if I would have the same type of experience.
This year was great in many ways. One thing I realize when I go to things, or one thing I remember when I go to things, is that I really don't like to be alone. That may surprise some who know me or knew me when I was younger, but it's true. I pack everything up from our cabin for the day, and I don't really go back to the cabin until night. I don't want to go back simply because I don't want to be alone. I enjoy getting to know people, and this year I met some new people and saw people I had met in the past. So there is that.
One thing I think was/is bugging me this year has been the effects of the summer heat. It hasn't been as hot this summer as it was last year, but I've been to some hot, all day track meets for my daughter, and doing that has been killing me. This retreat has been the place where I realize my legs do still work, and I think I was nervous about it this year. But, they worked! It's fascinating... drop the temperature by 20 degrees and everything works better. I was standing straighter and adding a new drill I made up after working with my physical therapist. Someone asked me how often I exercise and I responded "as much as possible." The temperature dropped even further with a huge rainstorm, and I just kept walking. This year I was walk much longer than in previous years.
And finally, there's the handing things over to God thing. There's a song called "My Little Room" that we sing each year. The lyrics are something like this:
"When the lightning’s laughing/ And the thunder laps are crashing/ Remind me that you’re asking, for me to go inside of My little room/ where I can pray/ and trust that God will find a way to/ even on the darkest night/ fill the sky with little sparks of light."
We were singing this the first night and it really hit me - there are so many parts of life that are difficult; there are many times in life when thunder is crashing, we wonder if things will work out, perhaps we doubt ourselves and our abilities, and we wonder about the motives of others. These are the times when we should pray and trust that the promise of God's Grace will guide us. Let go of so many things that are overwhelming about life.
The weekend was as amazing as it was in other years. In other years, I've had specific "issues." This year, all the little things can creep up on us, and rather than jumping from one thing to the next without trying to hit the panic button, maybe we should take a step back and trust God.
Peace.
Monday, September 2, 2013
Wednesday, August 28, 2013
Why walk?
Someone asked me "Why walk?" today. It's not the first time this has happened. So I got to thinking, maybe I should, instead of trying to explain it, turn the question. Why do you walk? Why does anyone walk? Why don't we all get wheelchairs and sit?
Things would be a lot easier this way. This way, people would be at more of the same height, I mean, relative to if we all stand. We could all see the world from the same height, and we could wonder, what is above us?
If we all used wheelchairs, we could totally eliminate stairs! Ramps would be everywhere, and no one would have to take a special route to get anywhere.
Prices for all the stuff needed would go way down! Bonus! Think cars... they'd all be made so wheelchairs fit.
This is sounding fantastic! Order the wheelchairs!!
Wait...
People would wonder what is up there. People would realize that ramps are long. Shoulder repair surgery would go up. Leg cramps would increase. There would be even fewer stalls in womens' restrooms (reason enough!). We would need more elevators. The obesity epidemic might get worse. And there is more.
Perhaps everyone should spend a day in a wheelchair first, to try it out. It may not be so popular.
Then people may realize why they walk. There are so many reasons.
Why walk? Look in the mirror. Why do you walk?
Peace.
Things would be a lot easier this way. This way, people would be at more of the same height, I mean, relative to if we all stand. We could all see the world from the same height, and we could wonder, what is above us?
If we all used wheelchairs, we could totally eliminate stairs! Ramps would be everywhere, and no one would have to take a special route to get anywhere.
Prices for all the stuff needed would go way down! Bonus! Think cars... they'd all be made so wheelchairs fit.
This is sounding fantastic! Order the wheelchairs!!
Wait...
People would wonder what is up there. People would realize that ramps are long. Shoulder repair surgery would go up. Leg cramps would increase. There would be even fewer stalls in womens' restrooms (reason enough!). We would need more elevators. The obesity epidemic might get worse. And there is more.
Perhaps everyone should spend a day in a wheelchair first, to try it out. It may not be so popular.
Then people may realize why they walk. There are so many reasons.
Why walk? Look in the mirror. Why do you walk?
Peace.
Wednesday, August 7, 2013
Are we serious?
After each tragedy in this country in which behavioral health has played an obvious role, people say we need to be more serious about identifying behavioral (mental) health "issues," as well as treating them. A new theme in healthcare is the integration of behavioral health with primary care (primary care includes things like family medicine and pediatrics... it's not specialty care like neurology). That means if a person goes for say, a physical, their primary care physician may identify something like depression, and the idea is they may then work alongside people who specialize in behavioral health to assure the person receives treatment and continues to get support. Another idea in this area is to locate people who specialize in behavioral health within primary care clinics, so they are right there if someone needs something.
This is all fantastic. There are even grants to help with this integration of care (integration means instead of siloing different parts of medicine, all the different parts talk to each other). This works great, I think, from the standpoint of providers, assuming they can work together, assuming they have the freedom to identify and treat according to the needs of each individual. In medicine, there is the idea of patient centered care, where the individual patient and physician would strive for the best care for that patient. In addition, which seems to conflict a bit with the term patient-centered, there are guidelines which say if you have this disease, then these treatments are what you should get. Further, guidelines may say that you should not get this other treatment because it hasn't been proven to work for this disease. Then the problem becomes the clashing of guidelines with personalized care, where as I said, everyone is an individual and everyone responds differently... patient -centered.
Step away from behavioral health for a minute to the MS world. Ampyra is approved for MS, to help with walking, but it is only supposed to help so much... it has helped me more than it should have. Provigil is approved for narcolepsy and sleep apnea; it has mixed results with MS in terms of improving fatigue. If you've read my other blog entries, you might discover that I don't tend to respond to what the guidelines say I should. That is why it is critical that a patient like me is engaged in their care and works closely with a physician; otherwise nothing may work. Ampyra has helped me a lot; Provigil in combination has meant that I have more energy. Neither should work quite like that. Both do. In combination. This is personalized medicine over guidelines.
People may criticize personalized medicine over guidelines, in part because they may say that physicians like to prescribe medicine just to prescribe medicine. Actually I have heard this a lot. It's a common them. Providers are supposed to treat disease z according to guidelines. I find it interesting. In my case, Ampyra and Provigil were medicines at my request, due to lots of research. I pushed for them. Physicians then had to support me. I went on Provigil after trying 2 other things for MS fatigue. MS fatigue is different than just being tired mentally or physically, and it's very hard to explain. It's what happens at the end of a day when someone comes home exhausted... so exhausted they just sit the and grab something to eat, and just sit there, unable to sleep, with the thought of moving being "too much." You really can't understand it unless you have it, and not to be snobbish, but you can't relate other types of fatigue to it. It's often the point at which I just sit there and say, "God, this sucks. How long will this last?" But the combo of Ampyra and Provigil has largely taken it away. I haven't come home and sat with a piece of bread without moving for a very long time now. But darn it! I am not following those guidelines!
Back to behavioral health. Someone came to me once, because I'm this disability rep or whatever you want to call it. They told me they had switched health insurance. The new health insurance was following guidelines! As a result, they were taken off their routine of medications, the routine that worked, that was personalized, and that, of course, didn't follow guidelines. They told me it was affecting their ability to function. They were having a hard time working. They couldn't continue this much longer. This was all a behavioral health issue. It gets tricky because in behavioral health, patients can keep things secret. Most often no one knows anything. I have had other conversations like this one. They are all very confidential... "I have bipolar. Please don't tell anyone. I don't know what to do." Then I go to meetings where people joke about making sure to take their happy pills; where people joke about behavior. I sit there and wonder, in those meetings, how many people just may be taking those happy pills, or have a behavioral health diagnosis, in the meeting? How many people struggle to find the right combination of medications in order to live their lives; how long does it take them to find the right combination, which probably doesn't follow a guideline? Medicine is personalized. Physicians are helping to find that balance. They, like their patients, want their patients to be able to live life to it's fullest.
What gets in the way is insurance. A patient may find the balance in medications. It may have taken years to do so. I found the Provigil Ampyra balance. like many people with MS, depression is an extra "gift." If you think about it, it makes sense... Diagnosed at age 20, knowing I wouldn't run competitively. Not exactly a recipe for happiness. Medicines themselves can increase risk for depression, depending on the medication.
So we have behavioral health, including depression, and we have people wanting to integrate behavioral health with primary care. There's also continuity of care and adherence to medication use, which means if it works, don't change anything! And then the insurance companies, which are supposed to be a part of all of this, jump in and ruin it all! They take a look at a prescription and say no, we don't cover that - it doesn't fit our guidelines.
Imagine... for behavioral health, getting patients to keep taking their medications on a regular basis can be a challenge. When an insurance company says no, what is the person to do? If they have difficulty adhering to medications, it seems this is a good reason to drop the medicine. Then the consequences may be devastating.
What can be done? Are we serious about treating behavioral health, or are insurance companies more concerned with following their guidelines and saying no?
A few times, I have either gone off Provigil on my own, or not given it, or someone thought I should try something else. And it has never worked; rather, it causes depression, which comes on very quickly and is very extreme. This year I have had 2 new insurance companies who have tried to deny Provigil. I am lucky to have the ability to fight, to remember what happened when I went off it on my own. The fact that I have to fight leads me to see a glimpse of why people may stop taking medications and fall in a sense - down, down, down... which leads me to wonder if we are serious about treating behavioral health.
I don't think we are there yet. I don't know what it will take. But I will say my last fight was difficult, emotionally draining, when all I wanted was continuity of care and adherence to medications that keep me alive and going.
God?
Peace.
This is all fantastic. There are even grants to help with this integration of care (integration means instead of siloing different parts of medicine, all the different parts talk to each other). This works great, I think, from the standpoint of providers, assuming they can work together, assuming they have the freedom to identify and treat according to the needs of each individual. In medicine, there is the idea of patient centered care, where the individual patient and physician would strive for the best care for that patient. In addition, which seems to conflict a bit with the term patient-centered, there are guidelines which say if you have this disease, then these treatments are what you should get. Further, guidelines may say that you should not get this other treatment because it hasn't been proven to work for this disease. Then the problem becomes the clashing of guidelines with personalized care, where as I said, everyone is an individual and everyone responds differently... patient -centered.
Step away from behavioral health for a minute to the MS world. Ampyra is approved for MS, to help with walking, but it is only supposed to help so much... it has helped me more than it should have. Provigil is approved for narcolepsy and sleep apnea; it has mixed results with MS in terms of improving fatigue. If you've read my other blog entries, you might discover that I don't tend to respond to what the guidelines say I should. That is why it is critical that a patient like me is engaged in their care and works closely with a physician; otherwise nothing may work. Ampyra has helped me a lot; Provigil in combination has meant that I have more energy. Neither should work quite like that. Both do. In combination. This is personalized medicine over guidelines.
People may criticize personalized medicine over guidelines, in part because they may say that physicians like to prescribe medicine just to prescribe medicine. Actually I have heard this a lot. It's a common them. Providers are supposed to treat disease z according to guidelines. I find it interesting. In my case, Ampyra and Provigil were medicines at my request, due to lots of research. I pushed for them. Physicians then had to support me. I went on Provigil after trying 2 other things for MS fatigue. MS fatigue is different than just being tired mentally or physically, and it's very hard to explain. It's what happens at the end of a day when someone comes home exhausted... so exhausted they just sit the and grab something to eat, and just sit there, unable to sleep, with the thought of moving being "too much." You really can't understand it unless you have it, and not to be snobbish, but you can't relate other types of fatigue to it. It's often the point at which I just sit there and say, "God, this sucks. How long will this last?" But the combo of Ampyra and Provigil has largely taken it away. I haven't come home and sat with a piece of bread without moving for a very long time now. But darn it! I am not following those guidelines!
Back to behavioral health. Someone came to me once, because I'm this disability rep or whatever you want to call it. They told me they had switched health insurance. The new health insurance was following guidelines! As a result, they were taken off their routine of medications, the routine that worked, that was personalized, and that, of course, didn't follow guidelines. They told me it was affecting their ability to function. They were having a hard time working. They couldn't continue this much longer. This was all a behavioral health issue. It gets tricky because in behavioral health, patients can keep things secret. Most often no one knows anything. I have had other conversations like this one. They are all very confidential... "I have bipolar. Please don't tell anyone. I don't know what to do." Then I go to meetings where people joke about making sure to take their happy pills; where people joke about behavior. I sit there and wonder, in those meetings, how many people just may be taking those happy pills, or have a behavioral health diagnosis, in the meeting? How many people struggle to find the right combination of medications in order to live their lives; how long does it take them to find the right combination, which probably doesn't follow a guideline? Medicine is personalized. Physicians are helping to find that balance. They, like their patients, want their patients to be able to live life to it's fullest.
What gets in the way is insurance. A patient may find the balance in medications. It may have taken years to do so. I found the Provigil Ampyra balance. like many people with MS, depression is an extra "gift." If you think about it, it makes sense... Diagnosed at age 20, knowing I wouldn't run competitively. Not exactly a recipe for happiness. Medicines themselves can increase risk for depression, depending on the medication.
So we have behavioral health, including depression, and we have people wanting to integrate behavioral health with primary care. There's also continuity of care and adherence to medication use, which means if it works, don't change anything! And then the insurance companies, which are supposed to be a part of all of this, jump in and ruin it all! They take a look at a prescription and say no, we don't cover that - it doesn't fit our guidelines.
Imagine... for behavioral health, getting patients to keep taking their medications on a regular basis can be a challenge. When an insurance company says no, what is the person to do? If they have difficulty adhering to medications, it seems this is a good reason to drop the medicine. Then the consequences may be devastating.
What can be done? Are we serious about treating behavioral health, or are insurance companies more concerned with following their guidelines and saying no?
A few times, I have either gone off Provigil on my own, or not given it, or someone thought I should try something else. And it has never worked; rather, it causes depression, which comes on very quickly and is very extreme. This year I have had 2 new insurance companies who have tried to deny Provigil. I am lucky to have the ability to fight, to remember what happened when I went off it on my own. The fact that I have to fight leads me to see a glimpse of why people may stop taking medications and fall in a sense - down, down, down... which leads me to wonder if we are serious about treating behavioral health.
I don't think we are there yet. I don't know what it will take. But I will say my last fight was difficult, emotionally draining, when all I wanted was continuity of care and adherence to medications that keep me alive and going.
God?
Peace.
Monday, July 15, 2013
Right versus left
Dear God,
I know you already know what I'm thinking, yet for some reason I'm feeling compelled to write this blog entry as a letter. I suppose it will make me feel better. It's also one of those entries I'm writing to keep track of my life, but maybe someone will find it interesting. You just never know.
Before I decided to take Ampyra, I could hardly walk. You know. I would walk a little way, then I would sit on my walker and someone would pull me. I just read through about 1,000 pages of my medical record because I asked it be sent to me, so I figured I should go through it, and it says I could hardly walk. I also had trouble writing, and my right side has always been more affected. All this can happen when a person has MS for over 20 years. Remember when sometimes I would come home from work so exhausted that I would get a piece of bread, sit on the nearest chair, and eat it?Though I still get tired, it's not as bad as the bread example. Of course you know that.
Once on Ampyra, I started physical therapy (PT) because I somehow had a revelation of sorts that I
could only get so much better on my own, and I really worked hard at PT for about 2 years, before gradually easing off as I began to be able to do more on my own, some of which I had previously done at PT. Remember how I started at .2 miles an hour and got to 1.8? And if felt like real walking at the end? I wonder what it's like for people to just walk. I watch them, people, just walk. Looks so easy.
So at that recent appointment with my new neurologist (because of switching qjobs, and thus, health insurance), you know how I mentioned my numb right fingers because his last question was about numbness? And then he got a questioning look on his face, and said that type of numbness wasn't normal (is anything?) for someone with MS, and that I needed to be tested for something else. Was
that your trigger to clue me in on something, God... everything is not as it seems? Is that it? So then
of course I was tested, diagnosed with ulnar neuropathy, aka corbital tunnel syndrome, and told to have surgery. (This is actually a common bike injury from putting pressure on the handles of a bike,
much the same way that I put pressure on my hands when using my walker.) So you got me thinking... not all things are as they seem, and though I had thought my MS was getting worse in my hands, in reality something else was going on. Want me to tell others, God, that MS can cause weakness, but weakness may be something else? Well, I did tell some people. But then this was a trigger for something else I needed to know, right God? It was an important clue. I know, I wasn't really getting it yet. I needed more help, right?
I went back to PT, at a different location, because they had a 7am appointment so I could make it to work. So that initial evaluation and next appointment was another example of everything not being as it seems. MS has always affected my right side more. But in doing various exercises, my right leg is now the stronger side in many ways. A ha! I get it now! And in doing other exercises, my core muscles are stronger on the right. Talk about flip flop! Now what? Now I am a mixture of mostly right stronger and some left stronger. God, what is the deal here? Getting both sides the same?
Everything is not as it seems. Really, it's a big mess of stuff, whether it be my legs, or whatever, and we try to make sense of it and do the best we can. Like when my daughter brought this stuff in the Stump the Pastor bag... a mess of stuff... And you, God, help us take that stuff and somehow hold things together... Today I'm sad for someone else, and it seems like a big mess. But you'll help people get through that.
And you'll help me get through whatever and hopefully, do the best I can. I'll look for clues that are out there to help.
Peace.
I know you already know what I'm thinking, yet for some reason I'm feeling compelled to write this blog entry as a letter. I suppose it will make me feel better. It's also one of those entries I'm writing to keep track of my life, but maybe someone will find it interesting. You just never know.
Before I decided to take Ampyra, I could hardly walk. You know. I would walk a little way, then I would sit on my walker and someone would pull me. I just read through about 1,000 pages of my medical record because I asked it be sent to me, so I figured I should go through it, and it says I could hardly walk. I also had trouble writing, and my right side has always been more affected. All this can happen when a person has MS for over 20 years. Remember when sometimes I would come home from work so exhausted that I would get a piece of bread, sit on the nearest chair, and eat it?Though I still get tired, it's not as bad as the bread example. Of course you know that.
Once on Ampyra, I started physical therapy (PT) because I somehow had a revelation of sorts that I
could only get so much better on my own, and I really worked hard at PT for about 2 years, before gradually easing off as I began to be able to do more on my own, some of which I had previously done at PT. Remember how I started at .2 miles an hour and got to 1.8? And if felt like real walking at the end? I wonder what it's like for people to just walk. I watch them, people, just walk. Looks so easy.
So at that recent appointment with my new neurologist (because of switching qjobs, and thus, health insurance), you know how I mentioned my numb right fingers because his last question was about numbness? And then he got a questioning look on his face, and said that type of numbness wasn't normal (is anything?) for someone with MS, and that I needed to be tested for something else. Was
that your trigger to clue me in on something, God... everything is not as it seems? Is that it? So then
of course I was tested, diagnosed with ulnar neuropathy, aka corbital tunnel syndrome, and told to have surgery. (This is actually a common bike injury from putting pressure on the handles of a bike,
much the same way that I put pressure on my hands when using my walker.) So you got me thinking... not all things are as they seem, and though I had thought my MS was getting worse in my hands, in reality something else was going on. Want me to tell others, God, that MS can cause weakness, but weakness may be something else? Well, I did tell some people. But then this was a trigger for something else I needed to know, right God? It was an important clue. I know, I wasn't really getting it yet. I needed more help, right?
I went back to PT, at a different location, because they had a 7am appointment so I could make it to work. So that initial evaluation and next appointment was another example of everything not being as it seems. MS has always affected my right side more. But in doing various exercises, my right leg is now the stronger side in many ways. A ha! I get it now! And in doing other exercises, my core muscles are stronger on the right. Talk about flip flop! Now what? Now I am a mixture of mostly right stronger and some left stronger. God, what is the deal here? Getting both sides the same?
Everything is not as it seems. Really, it's a big mess of stuff, whether it be my legs, or whatever, and we try to make sense of it and do the best we can. Like when my daughter brought this stuff in the Stump the Pastor bag... a mess of stuff... And you, God, help us take that stuff and somehow hold things together... Today I'm sad for someone else, and it seems like a big mess. But you'll help people get through that.
And you'll help me get through whatever and hopefully, do the best I can. I'll look for clues that are out there to help.
Peace.
Tuesday, June 25, 2013
Downside Up
All I can say is wow. It has been 3 years since I have had to be on steroids for an MS attack. Wow. For 3 years I have been able to wake up each day and get up, even though each day I sit on the edge of my bed, wondering, before rising, if my leg muscles will work. For 3 years I have continued to improve on the medication called Ampyra. In those 3 years, my world has been turned "downside up," meaning life has become so much better, manageable, possible, less overwhelming, amazing, wonderful, and the list could go on. It hasn't been easy - what I have never is. It doesn't make any sense - other therapies haven't worked, have caused allergic reactions, have had side effects - and this medication comes along and works - and then neurologists say an MS diagnosis doesn't really fit me - and on and on - and I try to make sense of what does not seem to make sense to so many - including me - the impossible as possible - downside up.
Today I woke up, sat on the edge of the bed and wondered, would my legs work? And they did - I never take it for granted.
This past Sunday the gospel lesson was Luke 8: 26-39. The main point of this lesson is something about swine being drowned and the loss of bacon. :) No, that's just to make you go look up the text if you want.
The text is about a man who has demons inside of him, or he had some kind of mental disease, which Jesus cured. When people came to see this, "they were afraid." As the sermon in our church went, one can imagine why these people were afraid, because they had treated the man badly; would the man now remember how they had treated him?
That text isn't about me; I'm not a pastor and have no religious "authority" to explain it. That's my disclaimer statement. But it's kind of a "fun"text to use when I substitute me. It's my blog - the beauty of it, if you want to call it beauty, is doing whatever I want with it.
A woman (that would be me) had a disease for a long time and it kept taking away abilities of hers, so much so that she didn't even realize some of the many abilities she had lost, because she learned to compensate. Others mainly treated her very well, although a few questioned, without basis, her mental abilities.
Then a miracle drug came along and within 2 days of taking it, the woman was standing for longer than she had in years. Many people were happy for her and noticed many of the abilities she found again. She continued to improve and to this day, does not know how much further she can improve.
In a way, this woman feels like, perhaps, the man from the gospel text must have felt. She was not put away by herself, although at many times she felt alone and put away by herself, because that can be the inherent nature of disability.
As she got better, it was very exciting for her.
The gospel text leaves out what happens to the man next? How did people treat him? Did he remember how they had treated him?
The woman (me) of course didn't forget how people treated her - both good and bad. Her world was turned downside up... things are so much better. The same people who were supportive before she began the new medicine were supportive after she started the medicine. The people who were not supportive before the medicine? Well, to be honest, they still weren't supportive. Ampyra, the "Jesus" medicine if you really stretched things (which I'm not trying to do) really helped equip her to deal with these people. Only once did they run her down to the point where she questioned why she was being targeted, she questioned how she could hold everything together, and she did get sick, though did not have an MS attack.
So the man in the gospel? My bet is he still had to deal with at least a fraction of people who tormented prior to him being cured. This is human nature.
But the point is also not to dwell on these things. The point is to move forward. The woman continued to move forward. She recovered from the sickness, rested, and did not have an MS attack. She maintains friendships with the people who were always supportive. She has, at least for now, rid herself of those who never supported her.
And so I continue to move on. I'm starting new physical therapy tomorrow. I have goals. The goals get harder, but I want to meet them.
I'm celebrating 3 years of being able to stand today. It's a gift. Thanks to God for the miracles in life we don't see coming, that don't make any sense, and that turn our worlds downside-up.
Peace.
Today I woke up, sat on the edge of the bed and wondered, would my legs work? And they did - I never take it for granted.
This past Sunday the gospel lesson was Luke 8: 26-39. The main point of this lesson is something about swine being drowned and the loss of bacon. :) No, that's just to make you go look up the text if you want.
The text is about a man who has demons inside of him, or he had some kind of mental disease, which Jesus cured. When people came to see this, "they were afraid." As the sermon in our church went, one can imagine why these people were afraid, because they had treated the man badly; would the man now remember how they had treated him?
That text isn't about me; I'm not a pastor and have no religious "authority" to explain it. That's my disclaimer statement. But it's kind of a "fun"text to use when I substitute me. It's my blog - the beauty of it, if you want to call it beauty, is doing whatever I want with it.
A woman (that would be me) had a disease for a long time and it kept taking away abilities of hers, so much so that she didn't even realize some of the many abilities she had lost, because she learned to compensate. Others mainly treated her very well, although a few questioned, without basis, her mental abilities.
Then a miracle drug came along and within 2 days of taking it, the woman was standing for longer than she had in years. Many people were happy for her and noticed many of the abilities she found again. She continued to improve and to this day, does not know how much further she can improve.
In a way, this woman feels like, perhaps, the man from the gospel text must have felt. She was not put away by herself, although at many times she felt alone and put away by herself, because that can be the inherent nature of disability.
As she got better, it was very exciting for her.
The gospel text leaves out what happens to the man next? How did people treat him? Did he remember how they had treated him?
The woman (me) of course didn't forget how people treated her - both good and bad. Her world was turned downside up... things are so much better. The same people who were supportive before she began the new medicine were supportive after she started the medicine. The people who were not supportive before the medicine? Well, to be honest, they still weren't supportive. Ampyra, the "Jesus" medicine if you really stretched things (which I'm not trying to do) really helped equip her to deal with these people. Only once did they run her down to the point where she questioned why she was being targeted, she questioned how she could hold everything together, and she did get sick, though did not have an MS attack.
So the man in the gospel? My bet is he still had to deal with at least a fraction of people who tormented prior to him being cured. This is human nature.
But the point is also not to dwell on these things. The point is to move forward. The woman continued to move forward. She recovered from the sickness, rested, and did not have an MS attack. She maintains friendships with the people who were always supportive. She has, at least for now, rid herself of those who never supported her.
And so I continue to move on. I'm starting new physical therapy tomorrow. I have goals. The goals get harder, but I want to meet them.
I'm celebrating 3 years of being able to stand today. It's a gift. Thanks to God for the miracles in life we don't see coming, that don't make any sense, and that turn our worlds downside-up.
Peace.
Sunday, June 9, 2013
Anonymous
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.
("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.
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.
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