I don't necessarily want this blog to be a political one, but my readers should know how important access to health care is to me on a personal level. I really think it is a human right, and it makes me so sad to see people not be able to have access to the same medical care that I have simply because they were not born in the right situation. I've been extremely fortunate and I know many aren't as lucky as I have been.
As a teenager looking forward to voting for the first time, I never thought I would be a single-issue voter. As a chronically ill person, I find there is no more critical choice I can make. I also find it silly when other chronically ill people or parents of chronically ill children don't see how important it is to actually understand the issues and how important their votes can be to making sure they continue to have access to adequate medical care.
The current GOP platform with regards to health care is pretty straightforward. Turn everyone to the private insurance industry. Reading between the lines, it also reveals a complete lack of concern for the poor, the disabled, those who do not have personal agency. The current plans would curtail Medicaid, which has been a critical help to parents of sick children. It would make sure that single adults like me would just be totally screwed if they couldn't work. It's not fair. It's not right. But somehow, reducing costs by cutting people out of the health care system seems to make sense to these folks. Whatever happened to compassion?
These people seem to think that charities will spring up to help these people. If that was the case, how come there are so many preventable deaths in this country? The lack of access to health care is not something that most people can even begin to comprehend. If they do, they think it only happens in the third world, not here. There are actually very few options for getting help with insurance, copays, deductibles, etc. Somehow, though, this is supposed to magically materialize once the funding is cut. Many of those with power in the GOP party are very wealthy. I don't see a Romney hospital for the poor, despite the fact that he could certainly afford it.
It irks me to no end that these people claim to have America's best interests at heart, but they can't find it in themselves to care for the "least of these" by providing simple access to health care.
Showing posts with label opinion. Show all posts
Showing posts with label opinion. Show all posts
Thursday, August 30, 2012
Thursday, April 5, 2012
An Aware World
I would be remiss if I didn't mention that April is Primary Immune Deficiencies Awareness Month. Whoop tee doo. Every year I post a bunch about it, every year it's the same. People ignore it because it's not their issue. Ok whatever. That's fine.
This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.
My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.
My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.
Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.
This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.
My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.
My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.
Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.
Thursday, January 26, 2012
THE SKY IS FALLING
Oh wait. No it isn't.
So there's a manufacturer's shortage for many medications in the US right now. This happens sometimes, yadda yadda, not usually an issue. Most of the time there's something else to use. Besides that, there has never been a shortage so dire that I was denied product and I've been on almost a decade.
This is not the case with some people's preferred brand of IVIG, so if there's even a RUMOR of a shortage people totally freak out without taking 2 seconds to think and perform a simple google search.
Supplies of Gammagard, my product of choice, are currently "tight" per my specialty pharmacy. My infusion is in 2 weeks, but yet they will have no problem supplying my product. Ok. Great. Fast forward to today, when people are absolutely flipping out when they found out they might have to use another product. THEN the rumors start to fly. They're selling all our product to Europe, etc.
This is when I get frustrated. You're panicking people who already have anxiety problems potentially and making them think this is some kind of emergency (it's not) so why not take it down a notch and wait until you can get someone on the phone in the morning? Because that wouldn't be as dramatic? Sigh.
Like I said in the group...
-Not all pharmacies are having problems. Mine isn't. I called on Tuesday and everything is fine.
-The IVIG manufacturer in question has supported our community in ways unprecedented with other companies. They've also said NUMEROUS times that PIDD patients are an absolute priority to receive product. Off label uses (which use a great deal of product) would be last on the list.
-Only 3 facilities for the company are authorized to produce product to sell in the EU. 1 of those is in the US. Meanwhile, it doesn't even make sense for them to send product from US to sell in Europe. IVIG is cheaper per gram there.
-These shortages wouldn't happen if there were more healthy plasma donors. Donations fall off during the holidays, so if patients want to ensure a good pool, they should convince people to donate plasma more often.
I wish people would give a little more consideration before flying off into some land of rumor and total bull and would give even more consideration to sharing that stuff with others.
So there's a manufacturer's shortage for many medications in the US right now. This happens sometimes, yadda yadda, not usually an issue. Most of the time there's something else to use. Besides that, there has never been a shortage so dire that I was denied product and I've been on almost a decade.
This is not the case with some people's preferred brand of IVIG, so if there's even a RUMOR of a shortage people totally freak out without taking 2 seconds to think and perform a simple google search.
Supplies of Gammagard, my product of choice, are currently "tight" per my specialty pharmacy. My infusion is in 2 weeks, but yet they will have no problem supplying my product. Ok. Great. Fast forward to today, when people are absolutely flipping out when they found out they might have to use another product. THEN the rumors start to fly. They're selling all our product to Europe, etc.
This is when I get frustrated. You're panicking people who already have anxiety problems potentially and making them think this is some kind of emergency (it's not) so why not take it down a notch and wait until you can get someone on the phone in the morning? Because that wouldn't be as dramatic? Sigh.
Like I said in the group...
-Not all pharmacies are having problems. Mine isn't. I called on Tuesday and everything is fine.
-The IVIG manufacturer in question has supported our community in ways unprecedented with other companies. They've also said NUMEROUS times that PIDD patients are an absolute priority to receive product. Off label uses (which use a great deal of product) would be last on the list.
-Only 3 facilities for the company are authorized to produce product to sell in the EU. 1 of those is in the US. Meanwhile, it doesn't even make sense for them to send product from US to sell in Europe. IVIG is cheaper per gram there.
-These shortages wouldn't happen if there were more healthy plasma donors. Donations fall off during the holidays, so if patients want to ensure a good pool, they should convince people to donate plasma more often.
I wish people would give a little more consideration before flying off into some land of rumor and total bull and would give even more consideration to sharing that stuff with others.
Excuses
It is unusual for me to not volunteer to take care of things. As many things as I can for as many people. Lately, though, I've not been able to do as much due to the aforementioned series of sinus infections (my sinuses still ain't right, but that's another post for another time). I am finding that this results in dirty looks from people, as though I'm not doing enough, or pushy emails about why I've not completed things more quickly. I am but one person. I can only manage so much.
This brings me to an issue a friend pointed out on facebook. Why is it that parents get so much leeway for leaving early, not showing up, being generally unreliable, when folks like me, who try their best but have a disease that gets in the way, often wind up holding the bag? I understand that parenting is difficult, but so is living with a chronic illness. I do not whine about it. In fact, if you know about how I'm feeling in a given day, feel lucky because I do not share that information freely (except here, but... not everyone reads this, so I digress) for fear that people will not see me as normal.
I never use PIDD as an excuse to get out of something. If I say I can't, it isn't because I just don't want to, although I guess feeling so crappy you don't want to do something could qualify in that case, but I won't count it. Other people are able to make me feel SO GUILTY when I'm taking their time away from their precious babies (they grow up so fast, you know?) because I can't manage to add some additional task to my plate. It isn't fair to me. If your kids are going to be your primary priority, say so from the outset and don't volunteer to help just to be on the list. Don't push your work on me because you can't actually do what you've said because, odds are, I am working hard to meet my own commitments.
This brings me to an issue a friend pointed out on facebook. Why is it that parents get so much leeway for leaving early, not showing up, being generally unreliable, when folks like me, who try their best but have a disease that gets in the way, often wind up holding the bag? I understand that parenting is difficult, but so is living with a chronic illness. I do not whine about it. In fact, if you know about how I'm feeling in a given day, feel lucky because I do not share that information freely (except here, but... not everyone reads this, so I digress) for fear that people will not see me as normal.
I never use PIDD as an excuse to get out of something. If I say I can't, it isn't because I just don't want to, although I guess feeling so crappy you don't want to do something could qualify in that case, but I won't count it. Other people are able to make me feel SO GUILTY when I'm taking their time away from their precious babies (they grow up so fast, you know?) because I can't manage to add some additional task to my plate. It isn't fair to me. If your kids are going to be your primary priority, say so from the outset and don't volunteer to help just to be on the list. Don't push your work on me because you can't actually do what you've said because, odds are, I am working hard to meet my own commitments.
Monday, December 19, 2011
Neti Pot Amoeba
I keep seeing various articles like this one about people contracting the Naegleria fowleri amoeba via a neti pot.
First of all, you should never use tap water in a neti pot. I find them to be a high risk item anyway, because they must be properly sterilized to prevent infections of a number of baddies, so I prefer to use a can of sterile saline to ensure my safety. My doctor has said numerous times that neti pots and saline irrigation systems must be sterilized often and you must use distilled water. The packaging also says this.
Second, this amoeba must travel through the sinus cavities. This means it could have been contracted in the shower, bathtub, any number of ways. Usually reports of the amoeba surface after swimming in a freshwater lake.
Finally, how bad is this water treatment facility? The amoeba "isn't supposed to survive" the treatment process. Sure, you can't get it from drinking it, but people regularly interact with water via their nasal passages without any neti usage. I think that the use of a neti pot or similar system is far too beneficial to dismiss or stop doing because of these incidents. If people follow manufacturer (and their physician's) instructions, they wouldn't be using tap water in these things to begin with.
First of all, you should never use tap water in a neti pot. I find them to be a high risk item anyway, because they must be properly sterilized to prevent infections of a number of baddies, so I prefer to use a can of sterile saline to ensure my safety. My doctor has said numerous times that neti pots and saline irrigation systems must be sterilized often and you must use distilled water. The packaging also says this.
Second, this amoeba must travel through the sinus cavities. This means it could have been contracted in the shower, bathtub, any number of ways. Usually reports of the amoeba surface after swimming in a freshwater lake.
Finally, how bad is this water treatment facility? The amoeba "isn't supposed to survive" the treatment process. Sure, you can't get it from drinking it, but people regularly interact with water via their nasal passages without any neti usage. I think that the use of a neti pot or similar system is far too beneficial to dismiss or stop doing because of these incidents. If people follow manufacturer (and their physician's) instructions, they wouldn't be using tap water in these things to begin with.
Monday, August 1, 2011
Breast Cancer "Awareness"
As I am wont to do, I got in a discussion on Facebook about these silly, cryptic status messages. I am of the opinion that telling your shoe size in inches with a frowny face doesn't actually do anything to promote awareness or show support for breast cancer patients. In fact, I think the whole thing cheapens the experience of cancer.
Cancer sucks, I'm sure. I've never had it, but I have been very sick and have a chronic illness, so I can pretty well imagine that it would suck pretty hard. I've seen people go through chemo and it seems rough. It's not glamorous, it's not easy. I think it would be much better if people took the time to go to a chemo ward and sit with these women going through the worst experience of their lives. Hold their hands, bring them a sandwich. Actually do something meaningful.
It was pointed out to me that some people hide their cancer. I think this is well within their rights. I hid my PIDD for a long time and was reluctant to talk about the serious nature of my illness. I get that people don't want to make people feel sorry for them. That all makes sense to me, especially after having to have a needle biopsy for a lump. I verbally threatened everyone who knew that if I had cancer, they were to never ever lay hands or give to me anything with a pink ribbon. The pink ribbon movement was borne out of a sister's grief, but has taken things to a ridiculous and disrespectful level. You can now get "breast cancer awareness" themed grocery items, kitchen wares, NFL hats, and yes, even fast food. But what does buying these things do for the actual patients? They keep trying to find a cure for cancer.
You know what? I'm going to be really bold here. There is no cure for cancer. There. I said it. Cancer is the overgrowth of your body's own cells. That's what makes it so challenging to treat in the first place. It isn't some sort of virus we just need to figure out. The only way to "cure" it entirely would be to either teach the body to fight these types of cells or to stop cell growth. When your cells stop growing, you die. So I would rather we have a conversation about better, more effective, less invasive treatments for cancer, instead of this constant drumbeat about awareness and a "cure."
Cancer sucks, I'm sure. I've never had it, but I have been very sick and have a chronic illness, so I can pretty well imagine that it would suck pretty hard. I've seen people go through chemo and it seems rough. It's not glamorous, it's not easy. I think it would be much better if people took the time to go to a chemo ward and sit with these women going through the worst experience of their lives. Hold their hands, bring them a sandwich. Actually do something meaningful.
It was pointed out to me that some people hide their cancer. I think this is well within their rights. I hid my PIDD for a long time and was reluctant to talk about the serious nature of my illness. I get that people don't want to make people feel sorry for them. That all makes sense to me, especially after having to have a needle biopsy for a lump. I verbally threatened everyone who knew that if I had cancer, they were to never ever lay hands or give to me anything with a pink ribbon. The pink ribbon movement was borne out of a sister's grief, but has taken things to a ridiculous and disrespectful level. You can now get "breast cancer awareness" themed grocery items, kitchen wares, NFL hats, and yes, even fast food. But what does buying these things do for the actual patients? They keep trying to find a cure for cancer.
You know what? I'm going to be really bold here. There is no cure for cancer. There. I said it. Cancer is the overgrowth of your body's own cells. That's what makes it so challenging to treat in the first place. It isn't some sort of virus we just need to figure out. The only way to "cure" it entirely would be to either teach the body to fight these types of cells or to stop cell growth. When your cells stop growing, you die. So I would rather we have a conversation about better, more effective, less invasive treatments for cancer, instead of this constant drumbeat about awareness and a "cure."
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