So how is someone, knowing that someone has something like PD, going to ask “how in the world” something that person did took so long? All I have to say is are you dense? Do you honestly think that I don’t know that I’m more of a hindrance than a help out there on the floor? Why do you think that I put in a bid on a less physical position? Why do you think that my staying employed depends on this position?
Let me explain the entirety of the situation. One particular resident had to have a shower today. This isn’t so bad, but he took me forty five minutes to shower before I started showing symptoms of PD. Plus, I had to get his weight before showering him. Add in some permanent progression from the cold that turned into severe bronchitis to mild pneumonia, and what you have is a patient who takes extra long being taken care of by someone who is extra slow. I have to be slow. I’ll hit the floor otherwise, and that linoleum is hard. This shower took me an hour and fifteen minutes to accomplish.
To further complicate the matter, I was on the second lunch. The first lunch goes at eleven, the second at eleven-thirty. It is the responsibility of the person on the second lunch to fill the water pitchers with ice. This is usually done while the first lunch is away, but it’s not something set in stone, and I was still showering this resident. I started him at ten-thirty, and finished at quarter to twelve.
This particular coworker feels that this ice passing time is set in stone. She was very upset—not descriptive enough—ready to crucify me that the ice had not yet been passed. The way I see it, I was there till three, and as long as it got done before three, then my job had been done. The encounter went down like this,
Her: You didn’t pass ice?
Me: I just got done showering my guy.
Her: I’m not doing it, it’ll be waiting.
Me: Did I ask you to do it?
Her: No you didn’t ask. How in the world did it take you till quarter to twelve to shower your guy when you started at ten-thirty?
Me: I had a choice to make here. Do I rip her a new asshole? Do I tell her to politely kiss my ass? Do I ask her to take a wild guess as to why it took me so long? What I said was, “ it just did.”
The thing is, I fake being okay when I’m at work. I have to. Who wants to know that the person taking care of them is himself sick? There are very few residents who know or have known that I have PD. It’s only those who I feel that it’ll help to know that I have an idea what they’re feeling, because I often feel the same things. (I will never say, dear reader, that I know what they feel, but only an idea of it.) I’m someone who will listen, and for those few, it helps.
Thing is, I’m tired of faking being okay. I’m not. When I say that my employment depends on this position, I don’t mean that I’d quit because I’m pissed off that I didn’t get the position. I’d have to leave because I’m no good to anyone doing floor work anymore. I’m too damned slow.
To my coworker, who will probably never read this, but that means nothing right now, you need to try something. It’s real easy, I promise. You need to remember that I am not you. I don’t move at your speed. I don’t think like you do. I don’t reason like you do. I don’t run according to your schedule. As long as everything’s done before I leave, I don’t believe it matters when I do it. So the next time you need to open your interminable trap, try thinking first. Chances are, the person you’re talking to is fully aware already of his or her shortcomings. I tell you the truth, I really don’t need reminded.
Showing posts with label PD. Show all posts
Showing posts with label PD. Show all posts
Monday, November 1, 2010
Tuesday, October 26, 2010
Siloam
Another Tuesday night during the fall program at church. This year is a program that we’re calling Transformational Tuesdays. This is essentially a program where we gather together for a meal and then our rector gives us a talk based on the fruit of the Spirit. Today’s lesson was on peace.
Here’s a lesson I sorely needed given the past week. The funny thing is, I realized, before the end of the week, that God had my back the whole time. He let me go through my worries, the whole time carrying me to that point of realization. And then for that to be the topic of the night just floored me (not literally, dear reader, but you get the point). Now, dear reader, if you are not of the Christian faith, you may take a look at what happened the past couple of days and say, “huh… coincidence.” I have to say count the coincidences. How many does it take before a coincidence stops being coincidence?
The talk she gave was really good, and the reading we did, which I will get into later since I don’t want too much from the talk to seep in to my post. Some is okay, but not as much as will be if I do it in this post. It ended with an exercise in meditation, just sitting in Christ’s presence. That, to me, was the best part of the evening. This meditation thing is something that I need to do more often.
The perfect end to what has been a horrible seven days. When my cold hit my chest, it knocked me down and out. My Parkinson’s symptoms reached levels that I had never before experienced. Naturally, the first thing that crossed my mind was, “will this cause a permanent progression of the symptoms?” The unfortunate answer to that is yes, it did, but not so bad as they were during the height of my illness. I’m stiffer, I’m slower, my hand shakes more, but not so much as it could have been.
Even so, it makes me question how safe it is for me to be transferring people from bed to wheelchair. I’ve described the events of the meeting at work twice now, so I won’t be going into detail of it. But when I called last Friday to request a meeting, it was with a heavy heart that I did so.
I don’t know why I called it. I believe that there was something in the back of my mind that’s tired of fighting this damned thing. How about that, I’ve only been dealing with it for the past year, and I’m already tired of fighting it. Every time I seem to get ahead, I seem to lose something else. I lose a little balance, or a little muscle strength. This beast keeps taking, but only a little.
We talked about peace, and then, even now, I want to cry out from the depths of my soul. My eyes are not dry as I write about it, either. I’m not in full blown water works, praise God. Nevertheless, I want to say screw it. Something deep in me wants to let this bastard do what it’s going to do. That something wants to ask, “Why fight it? It’s going to win anyway.”
Now how did a posting starting with peace turn into a lament? Probably because I need to say it and don’t want to make someone listen to my whining. The blog is safe. If I were to say this out loud to someone, face to face, I can’t be certain that I won’t lose it. I haven’t lost it over this yet, and I definitely don’t want to start now. I can put my heart into the blog and never go past having some wet eyelashes. It’s safe here.
Plus there’s the knowledge that if you’ve gotten this far, dear reader, then I can be sure that you want to hear it. When I’m among people, my instincts are to not show weakness. What people can see—what I want them to see—is someone who accepts what’s happening to him and just plods onward. I don’t want someone to see me frustrated because I’m struggling to open the milk carton, or I knocked over something else because I have no concept of how much space is between my hand and an object. I don’t want someone knowing that I’m ready to scream I HAVE HAD ENOUGH at the top of my lungs.
This is where I need the peace that transcends all understanding that we’re promised in Ephesians 4:7. I long for that peace. I yearn for that peace. I’ll make you a deal, dear reader. Pray for me and I’ll pray for you (I’ll do that anyway). Then maybe we both can experience that kind of peace.
Here’s a lesson I sorely needed given the past week. The funny thing is, I realized, before the end of the week, that God had my back the whole time. He let me go through my worries, the whole time carrying me to that point of realization. And then for that to be the topic of the night just floored me (not literally, dear reader, but you get the point). Now, dear reader, if you are not of the Christian faith, you may take a look at what happened the past couple of days and say, “huh… coincidence.” I have to say count the coincidences. How many does it take before a coincidence stops being coincidence?
The talk she gave was really good, and the reading we did, which I will get into later since I don’t want too much from the talk to seep in to my post. Some is okay, but not as much as will be if I do it in this post. It ended with an exercise in meditation, just sitting in Christ’s presence. That, to me, was the best part of the evening. This meditation thing is something that I need to do more often.
The perfect end to what has been a horrible seven days. When my cold hit my chest, it knocked me down and out. My Parkinson’s symptoms reached levels that I had never before experienced. Naturally, the first thing that crossed my mind was, “will this cause a permanent progression of the symptoms?” The unfortunate answer to that is yes, it did, but not so bad as they were during the height of my illness. I’m stiffer, I’m slower, my hand shakes more, but not so much as it could have been.
Even so, it makes me question how safe it is for me to be transferring people from bed to wheelchair. I’ve described the events of the meeting at work twice now, so I won’t be going into detail of it. But when I called last Friday to request a meeting, it was with a heavy heart that I did so.
I don’t know why I called it. I believe that there was something in the back of my mind that’s tired of fighting this damned thing. How about that, I’ve only been dealing with it for the past year, and I’m already tired of fighting it. Every time I seem to get ahead, I seem to lose something else. I lose a little balance, or a little muscle strength. This beast keeps taking, but only a little.
We talked about peace, and then, even now, I want to cry out from the depths of my soul. My eyes are not dry as I write about it, either. I’m not in full blown water works, praise God. Nevertheless, I want to say screw it. Something deep in me wants to let this bastard do what it’s going to do. That something wants to ask, “Why fight it? It’s going to win anyway.”
Now how did a posting starting with peace turn into a lament? Probably because I need to say it and don’t want to make someone listen to my whining. The blog is safe. If I were to say this out loud to someone, face to face, I can’t be certain that I won’t lose it. I haven’t lost it over this yet, and I definitely don’t want to start now. I can put my heart into the blog and never go past having some wet eyelashes. It’s safe here.
Plus there’s the knowledge that if you’ve gotten this far, dear reader, then I can be sure that you want to hear it. When I’m among people, my instincts are to not show weakness. What people can see—what I want them to see—is someone who accepts what’s happening to him and just plods onward. I don’t want someone to see me frustrated because I’m struggling to open the milk carton, or I knocked over something else because I have no concept of how much space is between my hand and an object. I don’t want someone knowing that I’m ready to scream I HAVE HAD ENOUGH at the top of my lungs.
This is where I need the peace that transcends all understanding that we’re promised in Ephesians 4:7. I long for that peace. I yearn for that peace. I’ll make you a deal, dear reader. Pray for me and I’ll pray for you (I’ll do that anyway). Then maybe we both can experience that kind of peace.
Monday, October 25, 2010
The Lord is My Cane
On a particularly bad day, I find myself having to use a cane to walk. As much as I hate using it—I hate the idea so much that I call it my walking stick, on which my nine-year-old little boy finds it necessary to correct me that it is indeed a cane—as I don’t want to become dependent on it, sometimes I must put my stubborn nature behind and use the damned thing. Usually, when I finally break down and grab my stick ‘o’ the walking, I find that it makes my life ten times easier. I actually have something to hold my weight as I move my bad leg.
The fact of the matter is I’m just too stubborn. I’m only thirty-one years old. I shouldn’t be using a cane. I just need to suck it up and leave it to the old fogeys. A cane is great for them, they need it.
But my body reminds me that not everything that’s considered for old people is. I have what’s considered an old person’s disease. No one in their thirties can have Parkinson’s. I say tell that to Michael J. Fox—not to mention present company, dear reader. My point is that I sometimes need the help of a cane but I’m just too stubborn to depend on it.
So it is with us humans when it comes to depending on God. We want to think we can handle it, because that’s how many of us are raised. We’re taught from a very early age to handle our business on our own. Have a problem, here’s how to fix it. We’re just too stubborn. This is a broken world with broken people and we need a crutch. Some turn to drugs, some to alcohol, some to sexual promiscuity. How often do you hear, “yes, I do this or that, but that’s my only vice.” Coffee, cigarettes (for which I am guilty), the internet, porn websites; these are all vices that people have to get them through a bad day.
The good news is we don’t need those things. (If I repeat that a hundred times a day, maybe I’ll actually succeed in giving up smoking, but that’s for another discussion.) The great news is through faith in Christ Jesus, we don’t need those things to lean on anymore. (A hundred times a day, Jon, a hundred times a day.) By dependence on God through the resurrection, we have all the crutch we need. And what a vice it is.
And yes, I do have a Bible passage in mind as I write this. It is 2 Corinthians 1:8-10. Before I continue, I must make this disclaimer. I am not a theologian by any stretch of the imagination. I have no kind of college degree at all, let alone one in theology. These are just my comments on what I’ve been reading. The topic that I see in this one is dependence on God. I’m just hoping that I’m interpreting it correctly. Feel free to leave a comment if you disagree with anything that I write.For the sake of reference, I’m going to go ahead and type out the passage.
“We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us.”
Paul and his companions found it not necessary, but crucial to put their entire lives in God’s hands. I can’t speak to the peril in Asia, because I don’t know. I do know that it was peril to the point of death. This isn’t surprising, since during this period in history, Christians faced death every day on the basis of their faith. Despite the threat of death, each and every day, Paul and his companions put their lives in God’s hands to go out and preach Christ crucified.
Don’t I wish I was better at that dependence on God. I’ll refer back to my earlier post and retell my story from there, as it illustrates the point nicely. This marks the second time that not feeling well has caused what appears to be a permanent progression in symptoms. My fear with contacting the front office at work was that there would be nothing they could do, no other position to put me in so I could continue working. This caused a great deal of stress over the weekend. I spent too much time worrying over whether I’d emerge from today’s meeting with a job.
If you look at the Jordan river during flood season, it looks like nothing you want to step into. Overflowed banks, rapid swirling currents, it looks a mess. But God wanted the Levites to step into that while carrying the Ark of the Covenant when God led the Israelites into the promised land. And He stopped the waters. He didn’t do it before they stepped in, but after they did, at the last minute.
Well, that’s how God’s timing generally rolls. He gives us a set of obstacles that we can’t overcome without His help, then tells us that we must first step in. It wasn’t until I had that meeting/conference call that I realized that it was okay. There’s the possibility of a position with equal pay that will hold me for quite a while yet. I look left and see a wall of water. I look right and see the same. I look down and the ground is dry. All I can say is, whew. The LORD will take care of us. We need to be patient, but it will happen. God is my cane, and for that I’m overjoyed.
The fact of the matter is I’m just too stubborn. I’m only thirty-one years old. I shouldn’t be using a cane. I just need to suck it up and leave it to the old fogeys. A cane is great for them, they need it.
But my body reminds me that not everything that’s considered for old people is. I have what’s considered an old person’s disease. No one in their thirties can have Parkinson’s. I say tell that to Michael J. Fox—not to mention present company, dear reader. My point is that I sometimes need the help of a cane but I’m just too stubborn to depend on it.
So it is with us humans when it comes to depending on God. We want to think we can handle it, because that’s how many of us are raised. We’re taught from a very early age to handle our business on our own. Have a problem, here’s how to fix it. We’re just too stubborn. This is a broken world with broken people and we need a crutch. Some turn to drugs, some to alcohol, some to sexual promiscuity. How often do you hear, “yes, I do this or that, but that’s my only vice.” Coffee, cigarettes (for which I am guilty), the internet, porn websites; these are all vices that people have to get them through a bad day.
The good news is we don’t need those things. (If I repeat that a hundred times a day, maybe I’ll actually succeed in giving up smoking, but that’s for another discussion.) The great news is through faith in Christ Jesus, we don’t need those things to lean on anymore. (A hundred times a day, Jon, a hundred times a day.) By dependence on God through the resurrection, we have all the crutch we need. And what a vice it is.
And yes, I do have a Bible passage in mind as I write this. It is 2 Corinthians 1:8-10. Before I continue, I must make this disclaimer. I am not a theologian by any stretch of the imagination. I have no kind of college degree at all, let alone one in theology. These are just my comments on what I’ve been reading. The topic that I see in this one is dependence on God. I’m just hoping that I’m interpreting it correctly. Feel free to leave a comment if you disagree with anything that I write.For the sake of reference, I’m going to go ahead and type out the passage.
“We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us.”
Paul and his companions found it not necessary, but crucial to put their entire lives in God’s hands. I can’t speak to the peril in Asia, because I don’t know. I do know that it was peril to the point of death. This isn’t surprising, since during this period in history, Christians faced death every day on the basis of their faith. Despite the threat of death, each and every day, Paul and his companions put their lives in God’s hands to go out and preach Christ crucified.
Don’t I wish I was better at that dependence on God. I’ll refer back to my earlier post and retell my story from there, as it illustrates the point nicely. This marks the second time that not feeling well has caused what appears to be a permanent progression in symptoms. My fear with contacting the front office at work was that there would be nothing they could do, no other position to put me in so I could continue working. This caused a great deal of stress over the weekend. I spent too much time worrying over whether I’d emerge from today’s meeting with a job.
If you look at the Jordan river during flood season, it looks like nothing you want to step into. Overflowed banks, rapid swirling currents, it looks a mess. But God wanted the Levites to step into that while carrying the Ark of the Covenant when God led the Israelites into the promised land. And He stopped the waters. He didn’t do it before they stepped in, but after they did, at the last minute.
Well, that’s how God’s timing generally rolls. He gives us a set of obstacles that we can’t overcome without His help, then tells us that we must first step in. It wasn’t until I had that meeting/conference call that I realized that it was okay. There’s the possibility of a position with equal pay that will hold me for quite a while yet. I look left and see a wall of water. I look right and see the same. I look down and the ground is dry. All I can say is, whew. The LORD will take care of us. We need to be patient, but it will happen. God is my cane, and for that I’m overjoyed.
Wednesday, March 3, 2010
Did I Really Complain?
Was that me who was complaining about the price of Azilect? Was it truly I who threw a fit about how much the co-pay was on it? While I stand that $60 is ridiculous, it works so well. No stiffness at all. My back doesn’t hurt, the top of my calf up through the back of my knee isn’t cramping. My right foot isn’t killing me. This morning took some time to get out of bed, but once I got my meds in me, everything seemed to diminish. My worst problem is some cotton mouth with no good hallucinations to go with it. The advantage to that is it keeps me drinking the water.
Now I’m not trying to sell anyone on the Azilect. I’m just trying to write down my own experience with everything. While for those whom this drug works, it really works. It can be a really nasty event for some people, too. I know I guy for whom Azilect was prescribed and he’s had speech problems ever since. For confidentiality’s sake, I shall not give a name for that. It’s something I have to be incredibly careful with. I need to follow the instructions on not only that, but also the dietary restrictions that it comes with—so I don’t have to follow the dietary restrictions, but see my last post for why I plan to anyway—and I need to start reading the warnings of everything over the counter that I take. I can’t even start a dietary supplement without checking with the doctor anymore.
The problem I’m faced with isn’t that the treatment option is working, but it’s working too well. This only makes the probability of this being Parkinson’s Disease(PD) more likely. Some would say, “you’re young… you have a lot of time left before this gets exceedingly bad.” And those fine folks would be right. I do have a long time before that happens. PD is a progressive disease, and it tends to progress even more slowly in those with young onset PD. On my days where I’m taking it one day at a time, this is how I consider things. Plan for the future, but don’t forget to live for today either.
I don’t always do that. PD deals with a shortage of dopamine producing cells. Any time you mess with brain chemicals and enzymes, you have a short-circuiting brain. This is why depression happens in around 50% of PD patients. I can’t say that I’m having any kind of depression issues, but I have my moments where I look too far ahead, and that looks rather bleak.
Today I’m okay. That’s half the purpose of doing this blog. To help me in keeping my thoughts on the here and now and not on what’s coming. There’s a lot for me to learn about my condition, and as I learn things, I can pass them along. Like the new research into PD. It seems that some researchers are starting to believe that it’s an immune system disease. They even claim that a vaccine can stop progression in people with advanced PD and reverse the symptoms in those in the early stages of the disease. There’s hope out there, but I’ll have a level of skepticism until there’s some kind of hard evidence. Not only is there no definitive test for this out there (with the exception of discovering lewy bodies in the brain during an autopsy), but I’ve already seen people trying to take advantage of hope for a cure too many times.
Now, I sit here praising my meds, but they haven’t been put to the test as of yet. I’m on vacation until Monday. It’s easy to say that it’s working wonders. I’m not under any kind of stress. While I’ve got some things I want to accomplish, I only need to put in two or three leisurely hours per day to accomplish those things. The rest of my day is spent relaxing, playing on the computer, playing on Facebook, trying to figure out this thing they call blogging, all the while, especially right now as I put these words onto the screen, listening to some classic rock. Today, it’s The Dark Side of the Moon. The true test of this stuff will be when I go back to work on Monday and add my normal daily stress. I’ll let you know how that goes.
Now I’m not trying to sell anyone on the Azilect. I’m just trying to write down my own experience with everything. While for those whom this drug works, it really works. It can be a really nasty event for some people, too. I know I guy for whom Azilect was prescribed and he’s had speech problems ever since. For confidentiality’s sake, I shall not give a name for that. It’s something I have to be incredibly careful with. I need to follow the instructions on not only that, but also the dietary restrictions that it comes with—so I don’t have to follow the dietary restrictions, but see my last post for why I plan to anyway—and I need to start reading the warnings of everything over the counter that I take. I can’t even start a dietary supplement without checking with the doctor anymore.
The problem I’m faced with isn’t that the treatment option is working, but it’s working too well. This only makes the probability of this being Parkinson’s Disease(PD) more likely. Some would say, “you’re young… you have a lot of time left before this gets exceedingly bad.” And those fine folks would be right. I do have a long time before that happens. PD is a progressive disease, and it tends to progress even more slowly in those with young onset PD. On my days where I’m taking it one day at a time, this is how I consider things. Plan for the future, but don’t forget to live for today either.
I don’t always do that. PD deals with a shortage of dopamine producing cells. Any time you mess with brain chemicals and enzymes, you have a short-circuiting brain. This is why depression happens in around 50% of PD patients. I can’t say that I’m having any kind of depression issues, but I have my moments where I look too far ahead, and that looks rather bleak.
Today I’m okay. That’s half the purpose of doing this blog. To help me in keeping my thoughts on the here and now and not on what’s coming. There’s a lot for me to learn about my condition, and as I learn things, I can pass them along. Like the new research into PD. It seems that some researchers are starting to believe that it’s an immune system disease. They even claim that a vaccine can stop progression in people with advanced PD and reverse the symptoms in those in the early stages of the disease. There’s hope out there, but I’ll have a level of skepticism until there’s some kind of hard evidence. Not only is there no definitive test for this out there (with the exception of discovering lewy bodies in the brain during an autopsy), but I’ve already seen people trying to take advantage of hope for a cure too many times.
Now, I sit here praising my meds, but they haven’t been put to the test as of yet. I’m on vacation until Monday. It’s easy to say that it’s working wonders. I’m not under any kind of stress. While I’ve got some things I want to accomplish, I only need to put in two or three leisurely hours per day to accomplish those things. The rest of my day is spent relaxing, playing on the computer, playing on Facebook, trying to figure out this thing they call blogging, all the while, especially right now as I put these words onto the screen, listening to some classic rock. Today, it’s The Dark Side of the Moon. The true test of this stuff will be when I go back to work on Monday and add my normal daily stress. I’ll let you know how that goes.
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