I am an extremely fortunate person. I have an FSA and am able to elect to have money taken out of my paycheck before taxes.
I am usually more on top of things than this, but I logged in today to find that my poor balance is now at $16.45. Poor FSA. I elected $2000 this year, to help cover my travel to the IDF Conference in Phoenix, but apparently, I misjudged. It's amazing, especially considering how many OTC things I do not submit for reimbursement, etc. I know next year won't be quite as expensive (I'm probably skipping IDF retreats this summer) but YIKES. At least things turn over on March 1.
It's expensive to be sick. Blargh.
Monday, January 30, 2012
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, January 23, 2012
Saturday, January 21, 2012
Dear Sinuses
Dear Sinuses,
You had the audacity to rudely keep me up last night. I had to get up several times to clear you with saline rinse. this is not ok. NOT ACCEPTABLE, SINUSES! DO YOU HEAR ME!?!?!?! I think you're just angry because Cipro is over too soon. I understand. I'm kind of bummed, too, because we were doing so well. Now, not so much because you've decided to be difficult. I thought we had an understanding, but apparently not.
Please help me get the crap out of you before this gets any worse.
Thanks,
Me.
You had the audacity to rudely keep me up last night. I had to get up several times to clear you with saline rinse. this is not ok. NOT ACCEPTABLE, SINUSES! DO YOU HEAR ME!?!?!?! I think you're just angry because Cipro is over too soon. I understand. I'm kind of bummed, too, because we were doing so well. Now, not so much because you've decided to be difficult. I thought we had an understanding, but apparently not.
Please help me get the crap out of you before this gets any worse.
Thanks,
Me.
Thursday, January 19, 2012
Facebook Status "Awareness Month"
ADHD Awareness Month is September.
Autism Awareness Month is April.
Why am I seeing status messages that say that they are now and that you should definitely change your status to whatever disease thing? People are total sheep. They add whatever disease they're connected to to such status messages and post them. I saw one once that stretched the limits of belief. Did you really need to list the 86 diseases you think are invisible on that status? No, probably not. Did anyone become more aware of your particular illness because of that status? No, probably not. Would they become more aware if you posted information and helpful tools about your illness? Probably more than with just a status message.
I really can't understand all the status-message-chain-letters around. Have we not learned that lesson in print? Ok, then via email? No. No, we havent. I understand you want to be sympathetic to whomever posted the status in the first place, but how about offering a casserole, or if you're far away, send them a nice email or card? Why does your status message need to say "If you don't post this as your status for an hour, you hate all people with cancer?" The fact of the matter is, it doesn't need to say that.
Besides all of this, most of the "Awareness" stuff I see on Facebook is just thinly-veiled name dropping. How about, instead, we actually learn about these illnesses, the warning signs, all of that kind of thing? Can we post those as an alternative to these silly "awareness" photos and messages? Because those might actually help someone come to a diagnosis or figure out what's going on with their situation. But no one wants to know that the really have that disease or diagnosis, do they?
Autism Awareness Month is April.
Why am I seeing status messages that say that they are now and that you should definitely change your status to whatever disease thing? People are total sheep. They add whatever disease they're connected to to such status messages and post them. I saw one once that stretched the limits of belief. Did you really need to list the 86 diseases you think are invisible on that status? No, probably not. Did anyone become more aware of your particular illness because of that status? No, probably not. Would they become more aware if you posted information and helpful tools about your illness? Probably more than with just a status message.
I really can't understand all the status-message-chain-letters around. Have we not learned that lesson in print? Ok, then via email? No. No, we havent. I understand you want to be sympathetic to whomever posted the status in the first place, but how about offering a casserole, or if you're far away, send them a nice email or card? Why does your status message need to say "If you don't post this as your status for an hour, you hate all people with cancer?" The fact of the matter is, it doesn't need to say that.
Besides all of this, most of the "Awareness" stuff I see on Facebook is just thinly-veiled name dropping. How about, instead, we actually learn about these illnesses, the warning signs, all of that kind of thing? Can we post those as an alternative to these silly "awareness" photos and messages? Because those might actually help someone come to a diagnosis or figure out what's going on with their situation. But no one wants to know that the really have that disease or diagnosis, do they?
Friday, January 13, 2012
Cancer Barbie
I have all the sympathy in the world for little kids with cancer.
Since we've gotten that out of the way, I shall start my tirade. WHY DOES THERE NEED TO BE A BALD BARBIE? Oh right, there doesn't. Little girls shouldn't need a Barbie who looks like them, because, guess what, no one actually looks like Barbie! Shocking, but true.
I don't feel this makes a big contribution to any sort of well-being for these little girls. How about their friends and family make them feel beautiful outside of any references to dolls or external matters? How about we make them feel valuable and beautiful for being who they are and being brave in the face of all this?
Some people on Facebook seem to think this is the best idea in the world, and it seems to be catching on. They also seem to think that nonprofits actually make money on social marketing schemes. News flash, kids: social marketing makes very little money for these nonprofits and much more for the corporation they are "partnered" with. It's greenwashing. How about instead of a cancer barbie Mattel spends that development expense on just GIVING TOYS TO THE KIDS AT ST JUDE'S. How novel. Using a channel that already exists to do good. GO FIGURE.
EDIT: Also, do kids really need to be so focused on being sick all the time? I don't think so. I think the bald barbie idea just brings attention to "oh you're sick, you need a different barbie, not the ones you've always had."
Since we've gotten that out of the way, I shall start my tirade. WHY DOES THERE NEED TO BE A BALD BARBIE? Oh right, there doesn't. Little girls shouldn't need a Barbie who looks like them, because, guess what, no one actually looks like Barbie! Shocking, but true.
I don't feel this makes a big contribution to any sort of well-being for these little girls. How about their friends and family make them feel beautiful outside of any references to dolls or external matters? How about we make them feel valuable and beautiful for being who they are and being brave in the face of all this?
Some people on Facebook seem to think this is the best idea in the world, and it seems to be catching on. They also seem to think that nonprofits actually make money on social marketing schemes. News flash, kids: social marketing makes very little money for these nonprofits and much more for the corporation they are "partnered" with. It's greenwashing. How about instead of a cancer barbie Mattel spends that development expense on just GIVING TOYS TO THE KIDS AT ST JUDE'S. How novel. Using a channel that already exists to do good. GO FIGURE.
EDIT: Also, do kids really need to be so focused on being sick all the time? I don't think so. I think the bald barbie idea just brings attention to "oh you're sick, you need a different barbie, not the ones you've always had."
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