Oh? A little too much? Well, it's true. Experts estimate that 8-10 babies will die in Florida this year due to Severe Combined Immune Deficiency. Republican governor Rick Scott vetoed the testing to be "fiscally conservative." Read more about it here.
Again, politics has made it easy to be penny-wise and pound foolish. The measure would actually not only save lives, but also save money in the long run. Young babies can receive bone marrow transplants that will cure them and be relatively cost effective. Let's use the high-end bone marrow transplant cost estimate: $200,000 (according to the National Bone Marrow Transplant Link). If the child doesn't get the transplant, IVIG would be necessary. That can be $10,000/month or more. So, if treated early with BMT, there are very good outcomes for children with SCID. The ones who would get IVIG (if they lived that long)? Not good. Lots of hospitalizations and early deaths.
This just really doesn't make any sense. If you're interested, you can encourage Governor Rick Scott to follow the state's official advisory panel's unanimous recommendation here.
Tuesday, May 31, 2011
It's Not About You
I was reading this opinion piece in the New York Times and it really made me think about the things that have defined my life and choices.
Most of my life has been defined by necessity. I never had that whole "searching for yourself" aftercollege experience. I had to get myself together and get a job. One that had at least decent health insurance. Subsequently, I took a low paying job that I wound up hating because it was sort of related to my interests and had good insurance.
Since then, I've changed jobs several times and have been unemployed. That's a really stressful experience for someone with a chronic illness. You have to worry about feeding yourself AND about a job that has insurance. I took a job that was temp to hire. Never again. I like my job and I think the trial period was a good thing, but, really? It was a bad thing for me. It was stressful to consider that they may not hire me and I might have to continue paying for COBRA.
That is beside the point, though. I feel like there are many advantages I've gained from being sick and being more mature than my peers is one of them. I know it sounds a little strange to be thankful for illness, but it made me grow up and makes me consider my choices much more careful than your average 20-something. It isn't an easy path, but that's ok, too. I am grateful for it.
The article makes several good points about how successful people find their callings through necessity and how it's adversity that makes you great. I agree.
Most of my life has been defined by necessity. I never had that whole "searching for yourself" aftercollege experience. I had to get myself together and get a job. One that had at least decent health insurance. Subsequently, I took a low paying job that I wound up hating because it was sort of related to my interests and had good insurance.
Since then, I've changed jobs several times and have been unemployed. That's a really stressful experience for someone with a chronic illness. You have to worry about feeding yourself AND about a job that has insurance. I took a job that was temp to hire. Never again. I like my job and I think the trial period was a good thing, but, really? It was a bad thing for me. It was stressful to consider that they may not hire me and I might have to continue paying for COBRA.
That is beside the point, though. I feel like there are many advantages I've gained from being sick and being more mature than my peers is one of them. I know it sounds a little strange to be thankful for illness, but it made me grow up and makes me consider my choices much more careful than your average 20-something. It isn't an easy path, but that's ok, too. I am grateful for it.
The article makes several good points about how successful people find their callings through necessity and how it's adversity that makes you great. I agree.
Friday, May 27, 2011
Homelessness
I was walking into work today and, just like every other day, I walked by several homeless people on the benches outside the metro station. There is one man in particular that I worry about if I don't see every morning. He has a cot, sleeping bag, and seems to be friendly with the voices in his head. He's often telling a story. Today, his story was about his drug addicted friend who he thought was clean, but then he brought out a kit and tried to get him to use, too, and he just couldn't. In that moment, I was both struck by his candor and deeply sad for him that he has no one to tell his stories.
I often think about the chronically homeless and it hurts my heart. I hate to admit it, but some of what I feel for them is driven by my own selfishness and blessedness all at once. I know for a fact that if it wasn't for my family, my church, and my friends, I could very well wind up homeless and would die very quickly.
Chronic illness is not a cheap proposition. I put over $2000 in my FSA this year (for the first time, I have one and it is SO EXCITING) and I know it very well may not be enough. I also don't use it for everything I could, so... You get the idea. Combined with the portion of my insurance I pay myself, though that is a small portion, I spend over 10% of my income on my health care. Frankly, I get off pretty cheap.
What does this have to do with homelessness? But for the Grace of God, there go I. What happens when a chronically ill person loses a job in this economy? I was unemployed for 3 months last year, and I can tell you, without the stimulus bill, I would not have been able to afford the $1500 in COBRA payments for that period. I also would not have been able to afford my rent, without some outside financial help. I honestly do not know how people subsist on unemployment checks, especially around here, and I saw firsthand how easy it would be to slip into homelessness, even with a college education.
Every time I see a homeless person, I'm struck by the fact that most of them just need someone to take care of them and treat their illnesses, whether they be addicted to something, mentally ill, or whatever. I know how very lucky I am and have been to have the people I do. I just wish there were some way I could provide that kind of support to those people.
I often think about the chronically homeless and it hurts my heart. I hate to admit it, but some of what I feel for them is driven by my own selfishness and blessedness all at once. I know for a fact that if it wasn't for my family, my church, and my friends, I could very well wind up homeless and would die very quickly.
Chronic illness is not a cheap proposition. I put over $2000 in my FSA this year (for the first time, I have one and it is SO EXCITING) and I know it very well may not be enough. I also don't use it for everything I could, so... You get the idea. Combined with the portion of my insurance I pay myself, though that is a small portion, I spend over 10% of my income on my health care. Frankly, I get off pretty cheap.
What does this have to do with homelessness? But for the Grace of God, there go I. What happens when a chronically ill person loses a job in this economy? I was unemployed for 3 months last year, and I can tell you, without the stimulus bill, I would not have been able to afford the $1500 in COBRA payments for that period. I also would not have been able to afford my rent, without some outside financial help. I honestly do not know how people subsist on unemployment checks, especially around here, and I saw firsthand how easy it would be to slip into homelessness, even with a college education.
Every time I see a homeless person, I'm struck by the fact that most of them just need someone to take care of them and treat their illnesses, whether they be addicted to something, mentally ill, or whatever. I know how very lucky I am and have been to have the people I do. I just wish there were some way I could provide that kind of support to those people.
Thursday, May 26, 2011
Bad Patient! BAD!!
So most people are bad bad bad at being patients. Granted, doctors could, you know, be on time for appointments, etc, but that's beside the point. Right now, I'm talking about patients.
Being a frequent patient myself (obvi) I want to point you to this article on CNN. I can tell you that, personally, I'm guilty of a bunch of these, but there are some things I want to specifically point to as paramount and tell you why.
2. You lie.
Let's be real here. You shouldn't be going to a doctor you don't trust enough to tell your deepest secrets to. They do not care that you're sleeping with the entire professional hometown football team. They just need to know that information. If you leave it out or tell untruths about being a virgin or whatever, you're putting yourself at higher risk for just about everything.
Then again, I feel like most people need to be more honest about most things, so I'm kind of harsh on this one. In this case, the things you leave out could cost you your life. TELL THE TRUTH!
6. You don't know what medications you're taking.
Pay attention to what you put in your body. Always bring prscriptions with you to all of your doctor appointments. Most people aren't on enough things that this become prohibitive. If you don't want to do that, make a Word document listing your doses, times, etc and bring that. However you want to handle it, this is CRITICAL information for your medical team. I carry everything with me in case of emergency. Seriously. Everything I take. This could explain my very large purse.
7. You leave with unspoken questions and concerns.
Having an honest and forthcoming relationship with your doctor also includes actually voicing concerns and not being afraid of them. They aren't an authority figure, they're a partner.
9. You're too scared to disagree with your doctor.
It's your body. Sometimes, you have to fight for it. Doctors are not saints. They need to be challenged. A second opinion is not telling your doctor you don't trust them, but telling them you want to be certain. That's A-OK. Also, it helps give your doctor a sounding board for potential treatments. Often, challenging your doctor can ensure you get the best treatment for you.
10. You don't comply with the treatment plan.
I am bad about this one, guys. I'm going to be honest. SO SO BAD! I find myself not wanting to take pills or do what I need to do. Because I am compliant with so many parts of things that it's hard to keep doing it all the time. I just want a break.
Being a frequent patient myself (obvi) I want to point you to this article on CNN. I can tell you that, personally, I'm guilty of a bunch of these, but there are some things I want to specifically point to as paramount and tell you why.
2. You lie.
Let's be real here. You shouldn't be going to a doctor you don't trust enough to tell your deepest secrets to. They do not care that you're sleeping with the entire professional hometown football team. They just need to know that information. If you leave it out or tell untruths about being a virgin or whatever, you're putting yourself at higher risk for just about everything.
Then again, I feel like most people need to be more honest about most things, so I'm kind of harsh on this one. In this case, the things you leave out could cost you your life. TELL THE TRUTH!
6. You don't know what medications you're taking.
Pay attention to what you put in your body. Always bring prscriptions with you to all of your doctor appointments. Most people aren't on enough things that this become prohibitive. If you don't want to do that, make a Word document listing your doses, times, etc and bring that. However you want to handle it, this is CRITICAL information for your medical team. I carry everything with me in case of emergency. Seriously. Everything I take. This could explain my very large purse.
7. You leave with unspoken questions and concerns.
Having an honest and forthcoming relationship with your doctor also includes actually voicing concerns and not being afraid of them. They aren't an authority figure, they're a partner.
9. You're too scared to disagree with your doctor.
It's your body. Sometimes, you have to fight for it. Doctors are not saints. They need to be challenged. A second opinion is not telling your doctor you don't trust them, but telling them you want to be certain. That's A-OK. Also, it helps give your doctor a sounding board for potential treatments. Often, challenging your doctor can ensure you get the best treatment for you.
10. You don't comply with the treatment plan.
I am bad about this one, guys. I'm going to be honest. SO SO BAD! I find myself not wanting to take pills or do what I need to do. Because I am compliant with so many parts of things that it's hard to keep doing it all the time. I just want a break.
On The Metro
There are a lot of things I put up with because I have to on a daily basis. Some of these things are worse than others and some days everything sucks. For the most part, I have few things to complain about... Not that I don't complain, mind you, but most of it isn't so bad. One of the things that is bad pretty often is my commute on the lovely Washington Metropolitan Area Transit Authority trains and buses. Yes, I'm using the term "lovely" sarcastically...
I ran across a tweet this morning that got me thinking. I have an invisible illness. People can't see when I'm hurting or feeling cruddy or wanting to escape from my life. This happens more often than I would like it to, sure, but I like that people don't feel sorry for me. Sometimes, the invisibility of my illness is accentuated by the fact that people are often caught up in their own world and don't want to notice. Most of the time, that's perfectly ok with me, but some days I wonder about the humanity of others.
The tweet in question was from a young woman with a broken foot. No one on her train would stand so she could sit. She has a very visible problem and is in a boot. You would imagine that people would at least be polite enough to move. I don't know whether she asked or not, but I've been in plenty of situations where asking people still doesn't stir them to allow you to sit. I'm pretty sure they see me and go "yeah, right, THAT girl has a disability? she's just chubby and wants to sit." Yuppie guy with floppy hair and easter egg tie, how I wish that were the case.
But I'm brought back to the lady with the broken foot. Really, people? REALLY? Ugh, humanity.
I ran across a tweet this morning that got me thinking. I have an invisible illness. People can't see when I'm hurting or feeling cruddy or wanting to escape from my life. This happens more often than I would like it to, sure, but I like that people don't feel sorry for me. Sometimes, the invisibility of my illness is accentuated by the fact that people are often caught up in their own world and don't want to notice. Most of the time, that's perfectly ok with me, but some days I wonder about the humanity of others.
The tweet in question was from a young woman with a broken foot. No one on her train would stand so she could sit. She has a very visible problem and is in a boot. You would imagine that people would at least be polite enough to move. I don't know whether she asked or not, but I've been in plenty of situations where asking people still doesn't stir them to allow you to sit. I'm pretty sure they see me and go "yeah, right, THAT girl has a disability? she's just chubby and wants to sit." Yuppie guy with floppy hair and easter egg tie, how I wish that were the case.
But I'm brought back to the lady with the broken foot. Really, people? REALLY? Ugh, humanity.
A New Adventure
Amazon suggested to me that I use "Lisa's Scheming Immunity" as a payphrase. I really don't feel comfortable with the concept, but I do love that and it inspired me to start this blog. I have decided to express opinions on various topics related to my Primary Immune Deficiency Disease. Some of these musings will be medical, some political, some social, but hopefully they'll make you think and help you walk a mile in my shoes.
Hope you enjoy!
Hope you enjoy!
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