I've been thinking about a lot of future-related things lately. Having friends who are struggling to find their path along with news about the economy and coming sequester is making me somewhat introspective.
What would happen to me if I were furloughed? Not a pretty picture or a thought I really want to have. It could happen to me, though, depending on how the cuts go. Do I find it likely? No. Is it still on my mind occasionally? Absolutely. We work on many federal contracts and I support them. I believe I would be paid out of our reserve funds before I would be furloughed, but there has been no clear pronouncement of that fact. I just have to trust that they'll do the right thing.
Losing that large a chunk of my income would not completely ruin my finances, but it would leave me less able to pay my bills. I already know I would have to cancel services and cut back majorly... probably eat a lot of rice and beans... and it would not be fun. I feel for those people who haven't been as fortunate as I or those who are just starting their careers and face this issue. It's not fun to live paycheck to paycheck and even less fun to lose even a small bit of a check, or to have it delayed.
My own start in the professional world was rough. I did not make enough money to make ends meet or to pay for my medical stuff. It's hard to be healthy when all you can afford is $1 or less per meal because you're paying for so much that you can't help and you can't control.
I keep hearing people talk about the American Dream and how it is the dream that your children will be better off than you are, able to do the things you weren't. I feel very often that my parents' dreams for us have been stunted by the choices of their contemporaries. I don't have the money or the energy to further my education. I would perhaps have the energy if I was able to quit work and just focus on school. I can't. I will never own a home unless I somehow fall into some financial windfall or someone just gives me a house that is near the medical care I need. It's a catch 22. I can't afford (really) to live in a city, but I must not only live in a city but in particular cities to be able to access the care I need. Not to mention having to live here to get good enough health insurance through my employer.
Is this really what we want for ourselves and our future? I'm trying to be a productive member of society, but I have trouble keeping my head above water because my life moves from crisis to crisis because of illness. I'm finally feeling stabilized now and looking at the havoc my various issues (not just health but things like unemployment) have caused and it's frightening to know that I'm one of the lucky ones that are better off. Yikes.
Wednesday, February 27, 2013
Sunday, February 17, 2013
Sad and Scary
The past week has been extremely busy for me at work and have been eventful in the PIDD community in the most unfortunate way. I found out that a couple of very different patients passed away. It weighs heavy on my heart in many ways.
The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.
The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.
Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.
The first was a man named Mark. He was a CVID patient like me... and he was doing very well. So well, in fact, that there was no issue with him getting an outpatient surgery. He had the procedure and developed meningitis. This was a well-controlled patient on adequate replacement. That's part of what makes it so scary for me. He died because of a "routine" procedure.
The second was a 12 year old boy named JP. JP actually had an immune deficiency that is considered by some to be less severe than mine. JP also had other complications and issues that he was constantly fighting. It's so scary because his pneumonia started out much the same way my first big sickness did. He was fine and then, suddenly, he wasn't. I am just so struck by how much his family must be hurting right now. I can't imagine losing a child, a sibling... It's got to be amazingly difficult.
Situations like this give me a big case of the "What Ifs." What if I hadn't gotten better? What if my family doctor hadn't been on top of things when I was in middle school? What if I had gotten meningitis after one of my many outpatient procedures? What if my family had to make the decision to remove life support? What if? I am both jarred by these stories and thankful that I'm still here.
Thursday, January 24, 2013
Dear Mister President
President Obama,
Let me start out by saying congratulations on winning a second term. I voted for you both times because of your promise kept on trying to reform the debacle that is the US health care system. It wasn't everything I had hoped it could be, but you did something that many presidents had tried and failed to do, so kudos. Thank you for being so dedicated to making real strides in universal access to care. It's super important.
I'm writing to you to say how disappointed I am. The law does not go far enough. It does not set up a system by which we can buy into the federal health care system. It does not offer adequate improvement to Medicaid, and does too much for Medicare recipients. I'm sure I'm one of the few that would say that, but there are many Medicare recipients who can receive, frankly, way too much care. Care that they don't need. My friends on Medicaid, however, can't access the medications they desperately need that their doctors have prescribed. Breathing medications, medications for GI problems. It is ridiculous that disabled people who are often in most need of competent care are the least likely to be able to access it. That's a huge problem.
Also, this does not solve the issue of qualified medical professionals. Why is there a primary care shortage in this country? I think it's tied to the lack of medical schools, the need for tort reform, and the expense of medical education. Often, the poorest medical students go into the primary care field because they have experienced the real need first hand, but perhaps more middle class students would go that way if it felt in some way manageable. These doctors experience huge demands and little reward for their time. There's no real "doctor paycheck" for them. They work long hours in hopes of being reimbursed a pittance for what they've done. That's why the specialty fields are so packed. You get to have banker's hours, with interesting patients that don't call you at all hours. How nice!
When patients can't get in to see their primary doctors, they rely on urgent care and emergency rooms. Is that really the system we want to build? See your primary doctor for your yearly physical, but when you actually get sick, go see a stranger doctor that has no idea what your history is like. One that does not know you. I understand the purpose of urgent care and the need for emergency medicine, but I think the ER doctors I've met would rather treat real emergencies, rather than patients who waited too long to see their family doctors when they had pneumonia... because they couldn't get an appointment. Ridiculous.
I know you can't fix all of these things, but I would like to see some additions to the ACA that could touch on at least a few of them. Or start making movements in those directions. I know you've got other things to focus on, and I know getting Congress to do anything is impossible, but I really wish we could do something about all these things together.
All the Best,
LRM
Let me start out by saying congratulations on winning a second term. I voted for you both times because of your promise kept on trying to reform the debacle that is the US health care system. It wasn't everything I had hoped it could be, but you did something that many presidents had tried and failed to do, so kudos. Thank you for being so dedicated to making real strides in universal access to care. It's super important.
I'm writing to you to say how disappointed I am. The law does not go far enough. It does not set up a system by which we can buy into the federal health care system. It does not offer adequate improvement to Medicaid, and does too much for Medicare recipients. I'm sure I'm one of the few that would say that, but there are many Medicare recipients who can receive, frankly, way too much care. Care that they don't need. My friends on Medicaid, however, can't access the medications they desperately need that their doctors have prescribed. Breathing medications, medications for GI problems. It is ridiculous that disabled people who are often in most need of competent care are the least likely to be able to access it. That's a huge problem.
Also, this does not solve the issue of qualified medical professionals. Why is there a primary care shortage in this country? I think it's tied to the lack of medical schools, the need for tort reform, and the expense of medical education. Often, the poorest medical students go into the primary care field because they have experienced the real need first hand, but perhaps more middle class students would go that way if it felt in some way manageable. These doctors experience huge demands and little reward for their time. There's no real "doctor paycheck" for them. They work long hours in hopes of being reimbursed a pittance for what they've done. That's why the specialty fields are so packed. You get to have banker's hours, with interesting patients that don't call you at all hours. How nice!
When patients can't get in to see their primary doctors, they rely on urgent care and emergency rooms. Is that really the system we want to build? See your primary doctor for your yearly physical, but when you actually get sick, go see a stranger doctor that has no idea what your history is like. One that does not know you. I understand the purpose of urgent care and the need for emergency medicine, but I think the ER doctors I've met would rather treat real emergencies, rather than patients who waited too long to see their family doctors when they had pneumonia... because they couldn't get an appointment. Ridiculous.
I know you can't fix all of these things, but I would like to see some additions to the ACA that could touch on at least a few of them. Or start making movements in those directions. I know you've got other things to focus on, and I know getting Congress to do anything is impossible, but I really wish we could do something about all these things together.
All the Best,
LRM
Wednesday, January 16, 2013
A Broken Canvas
As often happens, I was contemplating life this morning while in the shower. Many times I come up with nothing more earth shattering than an idea for what to make for dinner. Sometimes, though, my brain gets to the nitty gritty thinking tasks that are easy to avoid.
Why am I sick? Why do I have this life? What if I was dunked in the waters of the Jordan? Why wouldn't that cure me?
For good and numerous reasons, theodicy and the concept that faith is not a shield remains a troubling issue for many people. But for me, it's not about the failure of God to create miracles in my life. It's the triumph of God's love over this imperfect mortal coil.
It's as though God has decided to paint my life across a broken canvas. It has holes, it's not ideal, but, thanks to the other blessings in my life, it's beautiful. Each of our canvases has imperfections. Even the most beautiful and wonderful lives are marred by pain of their own kind. Just because it isn't visible or obvious doesn't mean it's not there.
My dysfunctional body has shaped me into a person that I have begun to love. It's not easy to live here, in this time/place/situation, but I am thankful that I'm here. A hundred years ago, or even more recently, I would have died far before this point. God put me in this time, this place, and in this body. There is a lot to be grateful for, even if my canvas is full of gouges, holes, and blemishes. It's my own beautiful painting.
Why am I sick? Why do I have this life? What if I was dunked in the waters of the Jordan? Why wouldn't that cure me?
For good and numerous reasons, theodicy and the concept that faith is not a shield remains a troubling issue for many people. But for me, it's not about the failure of God to create miracles in my life. It's the triumph of God's love over this imperfect mortal coil.
It's as though God has decided to paint my life across a broken canvas. It has holes, it's not ideal, but, thanks to the other blessings in my life, it's beautiful. Each of our canvases has imperfections. Even the most beautiful and wonderful lives are marred by pain of their own kind. Just because it isn't visible or obvious doesn't mean it's not there.
My dysfunctional body has shaped me into a person that I have begun to love. It's not easy to live here, in this time/place/situation, but I am thankful that I'm here. A hundred years ago, or even more recently, I would have died far before this point. God put me in this time, this place, and in this body. There is a lot to be grateful for, even if my canvas is full of gouges, holes, and blemishes. It's my own beautiful painting.
Wednesday, December 19, 2012
Speedy Gonzalez
I am so extremely fortunate to be able to run my IV so fast. Makes it much more manageable. :-)
Tuesday, December 18, 2012
The Weight
I am naturally a fixer, a people pleaser, and someone who just wants to see other people happy.
That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.
Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).
So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!
I need to believe in a Christmas miracle. Pray for her. She deserves better.
That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.
Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).
So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!
I need to believe in a Christmas miracle. Pray for her. She deserves better.
Friday, December 14, 2012
An Ode to Nasonex and Symbicort
Sorry I've been neglectful, but life has been... intense.
Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.
So this song goes out to Nasonex and Symbicort. My life really would suck without you.
Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.
So this song goes out to Nasonex and Symbicort. My life really would suck without you.
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