Now that President Obama’s much lauded health care reform bill has nearly met it’s ultimate demise; status quo seems to be returning to Washington. No one is talking about the sick, the poor, and the uninsured, anymore. There’s no profit to be had advocating for a healthcare system that benefits the patient rather than large insurance conglomerates.
This is a sad state for our country to be in; because while billion dollar insurance companies lobby against a bill that would force them to stop dictating what kind of health care patients should receive, millions of Americans continue to suffer. Providing heath care shouldn’t be about making a profit, it should be about bettering quality of life.
Our country needs to stand up to the big businesses who run our health care system. We need politicians, who aren’t governed by approval ratings, to make a stand and fight for their constituents’ right to have health care that’s directed by a doctor and not dictated by a bottom line.
President Obama’s healthcare bill may yet see the light of day, but at what cost? To achieve bipartisan approval, how much ‘change’ will be sacrificed? Are we going to continue to allow insurance companies to hold most of the cards? Or are we, as Americans, going to rise up and demand an end to big businesses making huge profits at the expense of our care and quality of life! No one should be forced to suffer so an insurance company can add to their profit margin. No one should be forced to have a less effective treatment or medication, because a better treatment isn’t cost effective. It’s time that we demand a government that works for us, instead of catering to big, wealthy, corporations.
*This is a copy of a submission I sent to my local news paper, and is dedicated to a dear friend who is suffering from the consequences of being a part of a system that had no regard for her care and well being.
Sunday, January 31, 2010
Thursday, January 28, 2010
The Never Ending Battle
Having MS is like being a casualty in a war that began under somewhat shady, misleading, circumstances, and now can never seem to end. In short, I feel like I’ve got the Iraqi war going on in my body, and if the latest progression is any indication… Afghanistan too. Now, obviously I don’t have waring nations with solders, insurgents, missiles and bombs inside my body; but what I do have are two major body systems who for some reason have decided they can’t work together anymore.
One of the biggest questions I keep asking myself, God, the Universe is; how do two perfectly good body systems, who’ve worked together for over 30 years suddenly have a falling out? Did the immune system suspect that the nervous system was hiding neurons of mass destruction? Our bodies’ cells all regenerate over a period of several years; was this a vendetta started by a previous generation of cells now being carried on by the current? Or was it simply something mundane as the nervous system stole the immune system’s partner? I’ve heard that the limbic system is kinda easy.
In the end, it doesn’t matter how the war got started; even though it turned out that there were no neurons of mass destruction. The main focus now is how to establish peace between the systems. To date, most cease fires have ended because some unsuspecting moron, usually a virus or some bacteria, wanders into the neutral zone and gets themselves all blowed up; then someone accidentally/on purpose, crosses a line and the fighting begins all over again.
Now, I’ve decided that the focus of this current administration will be finding a peaceful resolution to this conflict; or at the very least a long term cease fire. Just somebody please make the limbic system wear something that covers it’s nucleus accumbens… no one needs to see that much nucleus… until the UN peace keeping troops arrive.
One of the biggest questions I keep asking myself, God, the Universe is; how do two perfectly good body systems, who’ve worked together for over 30 years suddenly have a falling out? Did the immune system suspect that the nervous system was hiding neurons of mass destruction? Our bodies’ cells all regenerate over a period of several years; was this a vendetta started by a previous generation of cells now being carried on by the current? Or was it simply something mundane as the nervous system stole the immune system’s partner? I’ve heard that the limbic system is kinda easy.
In the end, it doesn’t matter how the war got started; even though it turned out that there were no neurons of mass destruction. The main focus now is how to establish peace between the systems. To date, most cease fires have ended because some unsuspecting moron, usually a virus or some bacteria, wanders into the neutral zone and gets themselves all blowed up; then someone accidentally/on purpose, crosses a line and the fighting begins all over again.
Now, I’ve decided that the focus of this current administration will be finding a peaceful resolution to this conflict; or at the very least a long term cease fire. Just somebody please make the limbic system wear something that covers it’s nucleus accumbens… no one needs to see that much nucleus… until the UN peace keeping troops arrive.
Well Meaning Advice
There is never a shortage of well intentioned people offering up helpful suggestions to get you through any trouble you might have, whether you want their advice or not. Having MS, I get a lot of unsolicited well meaning, well intentioned advice.
Sometimes I can listen and understand that the advice comes from a place of concern and caring, but other times it’s hard sit and listen to people prattle on about things they don’t understand. I appreciate the efforts that people make on my behalf, and I understand the need to do something in the face of total helplessness. However, it can be exhausting trying to keep up with everything people suggest, and sometimes I just can’t take it.
What I wish a lot more people understood about MS is that it’s different for everyone. It’s nice to hear stories about people who have MS and are doing well, and what they take that got them to that point. It’s encouraging that it’s not all doom an gloom. However, what helped your aunt get to where she’s at isn’t necessarily going to work for me. I wish that somewhere out there, someone has discovered the secret to living well with MS that fits everyone who has it; unfortunately, we all have to find our own way of living. If I tried every idea and suggestion given to me, I would be spending all my time chasing clouds and wouldn’t have time to actually live.
Recently, I was accused of being too much of a downer because of my MS, I wasn’t trying to do anything positive, I wasn’t doing anything to better my situation. That accusation threw me for a loop at just how insensitive and insulting it was; I may not know the “right” way to deal with what’s going on, but I’m sure I know more than someone who doesn’t suffer from a debilitating chronic illness. Unfortunately, there are people who think that just because you don’t jump on the latest super food fad, the right kind of vitamins, or see holistic practitioners, you’re obviously not doing enough for yourself. As if eating exotic berries with pins through my body and reading how Montel Williams treats his MS is going to make a significant difference in my life. It’s so beyond insulting to suggest that someone with MS or any chronic illness isn’t doing enough for themselves just because they don’t follow fads. If there is a right way to deal with this; I’d love to meet the expert.
While well intentioned advice comes from a place of love, too much can start to feel like a burden. What do I do with every suggestion thats offered? Am I going to grievously insult someone because I didn’t immediately buy a bunch of açai berries, or the brand of vitamins or herbs they suggested I try? Do I beg my doctor to try new medicines and treatments that may not work with the type of condition I have; just to make someone happy?
The thing to remember is; people with chronic illnesses really don’t need others to try and help fix what is wrong. Having a chronic illness like MS by definition means that the condition is never going to go away and everyone eventually learns what works best for them in terms of management. It can get frustrating at times on both sides when advice is always being offered and yet not taken.
Some people might argue; Why would you say that you’re feeling badly, or are having a hard day, if you weren’t wiling to listen to a few helpful suggestions to make you feel better? Why come into work if you’re in pain, or go to a party if you’re tired? It’s confusing to know what someone is looking for, and the appropriate ways to respond. What I feel that many people don’t understand is; the world doesn’t stop going when you’re not feeling well. When you have something like MS, staying at home and waiting until you feel better could take a long time, and in that time you miss out on your life. I have to continue living life through the pain, discomfort, weakness, numbness, and fatigue. And when someone asks “How are you doing?” the response I give may have less to do with getting sympathy and more to do with the fact it takes a lot more energy to bullshit my way through the answer someone wants to hear than it does to say exactly how I’m feeling.
Does this mean I don’t want anyone, ever, sending me things they read on MS, or sharing what a close friend did to manage pain? Of course not! What I really want is some understanding that I can’t take everyone’s advice, and it doesn’t mean I’m not doing enough to help myself. It’s nice to know that I have so many good friends and family out there willing to take the time to research MS; just try not to be offended when I chose to manage my MS my way.
Sometimes I can listen and understand that the advice comes from a place of concern and caring, but other times it’s hard sit and listen to people prattle on about things they don’t understand. I appreciate the efforts that people make on my behalf, and I understand the need to do something in the face of total helplessness. However, it can be exhausting trying to keep up with everything people suggest, and sometimes I just can’t take it.
What I wish a lot more people understood about MS is that it’s different for everyone. It’s nice to hear stories about people who have MS and are doing well, and what they take that got them to that point. It’s encouraging that it’s not all doom an gloom. However, what helped your aunt get to where she’s at isn’t necessarily going to work for me. I wish that somewhere out there, someone has discovered the secret to living well with MS that fits everyone who has it; unfortunately, we all have to find our own way of living. If I tried every idea and suggestion given to me, I would be spending all my time chasing clouds and wouldn’t have time to actually live.
Recently, I was accused of being too much of a downer because of my MS, I wasn’t trying to do anything positive, I wasn’t doing anything to better my situation. That accusation threw me for a loop at just how insensitive and insulting it was; I may not know the “right” way to deal with what’s going on, but I’m sure I know more than someone who doesn’t suffer from a debilitating chronic illness. Unfortunately, there are people who think that just because you don’t jump on the latest super food fad, the right kind of vitamins, or see holistic practitioners, you’re obviously not doing enough for yourself. As if eating exotic berries with pins through my body and reading how Montel Williams treats his MS is going to make a significant difference in my life. It’s so beyond insulting to suggest that someone with MS or any chronic illness isn’t doing enough for themselves just because they don’t follow fads. If there is a right way to deal with this; I’d love to meet the expert.
While well intentioned advice comes from a place of love, too much can start to feel like a burden. What do I do with every suggestion thats offered? Am I going to grievously insult someone because I didn’t immediately buy a bunch of açai berries, or the brand of vitamins or herbs they suggested I try? Do I beg my doctor to try new medicines and treatments that may not work with the type of condition I have; just to make someone happy?
The thing to remember is; people with chronic illnesses really don’t need others to try and help fix what is wrong. Having a chronic illness like MS by definition means that the condition is never going to go away and everyone eventually learns what works best for them in terms of management. It can get frustrating at times on both sides when advice is always being offered and yet not taken.
Some people might argue; Why would you say that you’re feeling badly, or are having a hard day, if you weren’t wiling to listen to a few helpful suggestions to make you feel better? Why come into work if you’re in pain, or go to a party if you’re tired? It’s confusing to know what someone is looking for, and the appropriate ways to respond. What I feel that many people don’t understand is; the world doesn’t stop going when you’re not feeling well. When you have something like MS, staying at home and waiting until you feel better could take a long time, and in that time you miss out on your life. I have to continue living life through the pain, discomfort, weakness, numbness, and fatigue. And when someone asks “How are you doing?” the response I give may have less to do with getting sympathy and more to do with the fact it takes a lot more energy to bullshit my way through the answer someone wants to hear than it does to say exactly how I’m feeling.
Does this mean I don’t want anyone, ever, sending me things they read on MS, or sharing what a close friend did to manage pain? Of course not! What I really want is some understanding that I can’t take everyone’s advice, and it doesn’t mean I’m not doing enough to help myself. It’s nice to know that I have so many good friends and family out there willing to take the time to research MS; just try not to be offended when I chose to manage my MS my way.
Tuesday, January 26, 2010
Feeling Abandoned
There is a lot of guilt associated with having a chronic illness like MS. Knowing that what you’re going through is having a major impact on not only you but also your family; both emotionally and financially. It’s really hard not to feel responsible for the upheaval in their lives, the things your unable to do because of your condition or lack of funds. It’s really easy to sink into a pit of self pity and despair; feeling that the people around you secretly resent you because of the hardship they’re experiencing. It’s even worse if it becomes known that they actually kind of do.
Since being diagnosed with MS 5 months ago, I’ve experienced all of the feelings of guilt and despair. Rationally, I know that what is happening to me isn’t my fault, I didn’t cause it to happen; so there shouldn’t be guilt associated with having something that is totally beyond my control. However, it’s hard not to feel guilt when it’s aided by the insurance company who doesn’t want to cover certain medications or treatments, forcing you to pay out of pocket for what you need to feel better, and then finding out that I now make some friends uncomfortable because I’m sick.
What really gets me is; I have this condition I didn’t ask for and can never be rid of, feelings of guilt because I feel that I’m becoming a burden on my loved ones, and I have to now worry about losing friends because their assuming I no longer care about what goes on in their lives. I expected my insurance company to kick me while I’m down, withholding full coverage for my treatments until we spend money we don’t have on the deductibles, or refusing to pay for things I need. I just never saw it coming from someone I’d thought I could count on.
Many people have said, in passing, that bitching to me about what they have going on seems wrong because it pales in comparison to having MS. That sentiment bothers me because I don’t see it as a contest to see who has it worse in life. If I looked beyond myself I could probably find someone who has things worse than I do; I wouldn’t even have to look that hard to find that person. We all have things going on in our lives that seem huge and terrible, yet when you compare them to someone else’s problems, look small and insignificant. It doesn’t lesson the impact of what you have going on, acknowledging someone else’s pain doesn’t make yours vanish, but you’ve at least given yourself some perspective.
I’ve tried really hard to not let what is happening to me overwhelm my friends. I try to keep a broader frame of mind and remember that I’m not the only person who’s got something going on; and it makes me a little guilty that I do sometimes become egocentric. However, it makes me frustrated and angry when people don’t talk to me because they assume I won’t be interested in what they have to say, and that I think their problems aren’t worth my consideration.
I’m tired of being seen for what I have and not who I am. I am not MS, I do not embody the disease, it is not who I am. The person I am now is still the same person I was before my body decided to crap out on me. My perspectives in life have changed as I’ve learned to appreciate the good things more, but over all I am still the same person. Yet, I feel like I have a scarlet A tattooed on my forehead and am now not fit to be in the company of others because I represent for some people, their worst fears and they might have to think about what would happen if their bodies decided to rebel against them.
Obviously, it is better to live in denial than face your fears and try to be there for someone in need.
Since being diagnosed with MS 5 months ago, I’ve experienced all of the feelings of guilt and despair. Rationally, I know that what is happening to me isn’t my fault, I didn’t cause it to happen; so there shouldn’t be guilt associated with having something that is totally beyond my control. However, it’s hard not to feel guilt when it’s aided by the insurance company who doesn’t want to cover certain medications or treatments, forcing you to pay out of pocket for what you need to feel better, and then finding out that I now make some friends uncomfortable because I’m sick.
What really gets me is; I have this condition I didn’t ask for and can never be rid of, feelings of guilt because I feel that I’m becoming a burden on my loved ones, and I have to now worry about losing friends because their assuming I no longer care about what goes on in their lives. I expected my insurance company to kick me while I’m down, withholding full coverage for my treatments until we spend money we don’t have on the deductibles, or refusing to pay for things I need. I just never saw it coming from someone I’d thought I could count on.
Many people have said, in passing, that bitching to me about what they have going on seems wrong because it pales in comparison to having MS. That sentiment bothers me because I don’t see it as a contest to see who has it worse in life. If I looked beyond myself I could probably find someone who has things worse than I do; I wouldn’t even have to look that hard to find that person. We all have things going on in our lives that seem huge and terrible, yet when you compare them to someone else’s problems, look small and insignificant. It doesn’t lesson the impact of what you have going on, acknowledging someone else’s pain doesn’t make yours vanish, but you’ve at least given yourself some perspective.
I’ve tried really hard to not let what is happening to me overwhelm my friends. I try to keep a broader frame of mind and remember that I’m not the only person who’s got something going on; and it makes me a little guilty that I do sometimes become egocentric. However, it makes me frustrated and angry when people don’t talk to me because they assume I won’t be interested in what they have to say, and that I think their problems aren’t worth my consideration.
I’m tired of being seen for what I have and not who I am. I am not MS, I do not embody the disease, it is not who I am. The person I am now is still the same person I was before my body decided to crap out on me. My perspectives in life have changed as I’ve learned to appreciate the good things more, but over all I am still the same person. Yet, I feel like I have a scarlet A tattooed on my forehead and am now not fit to be in the company of others because I represent for some people, their worst fears and they might have to think about what would happen if their bodies decided to rebel against them.
Obviously, it is better to live in denial than face your fears and try to be there for someone in need.
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