So we all know how I feel about using children as an excuse. I know it's difficult to be a parent and I have all the respect in the world for those who choose to become parents and are dedicated to their children.
There comes a time when this becomes absurd. Being a parent shouldn't entitle you to any special privileges. Maybe I'm just tired and unsympathetic right now, but just because you spawn some progeny doesn't mean you should get more sick leave.
Yes. A friend with a new baby was complaining that because she has to take care of 2 people she should be entitled to two times the sick leave. Nope, sorry. You chose to have kids. I didn't choose to have a disease that has me spending a lot of sick, vacation, and unpaid leave to care for myself. Just because you've decided to have kids doesn't mean you should have more rights to sick time than I do.
In the first year of life, new parents are entitled to 12 weeks of FMLA. Mom and Dad both have that option (should their employers be large enough), so that amounts to 24 weeks of leave. Yes, babies get sick often and can often make the parents sick also, but that shouldn't get you more leave. Heck, you should feel lucky you have paid leave at all. There are millions of parents in this country who don't have paid leave of any kind, let alone the ability to take FMLA time, even if they are legally entitled to it.
"Children are the future." Yes. They are. But your child's future doesn't make you more important than me, especially not in the eyes of the law. Parents get a lot of leeway for a lot of things and people don't ask new parents for favors. Take what you can get and please, for the love of all that is good, just shut up about what a challenge it is. Talk to me when you've been going to work for the better part of the last 4 months while sick enough to take a sick day.
Note: many of the parents I know are not like this, but there are a vocal few who seem to think they're better than I am and more deserving of the ability to have time off when they or little Timmy are sick.
Showing posts with label Rant. Show all posts
Showing posts with label Rant. Show all posts
Monday, February 13, 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.
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."
Tuesday, December 6, 2011
A Note to Smokers
I'm not going to sit here and lie to you. Yes, I have smoked cigarettes socially in the past. Could I dream of doing that now? No way. The nature of my disease progression has been into asthma and autoimmune lung problems, so smoking would not only be a bad idea, but a costly one to me in terms of overall well-being almost instantly.
That being said, I have friends who are smokers. Sometimes they complain about the lack of places for them to smoke or about people who ask them to not smoke in a certain area. I've been known to speak up to someone who is smoking where they lack rights to, because it actually matters to me. Most of the time, I suck it up and walk through or behind or whatever, but when someone is smoking in a nonsmoking area, it really bugs me. You make a personal choice to smoke. I didn't make the choice to have CVID and some sort of amorphous autoimmune issue. When you smoke in inappropriate places, places where my lungs should be getting a break, it causes me physical pain.
What do I mean by physical pain? I feel as though that cigarette has morphed into a torch, which has been inconveniently shoved into my lungs. It costs me enormous piles of spoons that I would much rather spend elsewhere.
I would like to make a request of my smoking friends. Please be polite about smoking and don't smoke where you aren't supposed to. It really can become a matter of life or death on a bad asthma day. I may look great, sound great, seem fine, but I could have had an asthma attack a couple hours prior. I'm not asking that you quit smoking or not smoke in public. On the contrary, I'm asking you to abide by the social covenant and laws set out by various jurisdictions. Don't smoke where you aren't supposed to. Is that so difficult?
That being said, I have friends who are smokers. Sometimes they complain about the lack of places for them to smoke or about people who ask them to not smoke in a certain area. I've been known to speak up to someone who is smoking where they lack rights to, because it actually matters to me. Most of the time, I suck it up and walk through or behind or whatever, but when someone is smoking in a nonsmoking area, it really bugs me. You make a personal choice to smoke. I didn't make the choice to have CVID and some sort of amorphous autoimmune issue. When you smoke in inappropriate places, places where my lungs should be getting a break, it causes me physical pain.
What do I mean by physical pain? I feel as though that cigarette has morphed into a torch, which has been inconveniently shoved into my lungs. It costs me enormous piles of spoons that I would much rather spend elsewhere.
I would like to make a request of my smoking friends. Please be polite about smoking and don't smoke where you aren't supposed to. It really can become a matter of life or death on a bad asthma day. I may look great, sound great, seem fine, but I could have had an asthma attack a couple hours prior. I'm not asking that you quit smoking or not smoke in public. On the contrary, I'm asking you to abide by the social covenant and laws set out by various jurisdictions. Don't smoke where you aren't supposed to. Is that so difficult?
Friday, September 2, 2011
SPOILER ALERT!
After my previous rant on the subject, I thought for sure I wouldn't get these:
Ok ladies, it's that time of year again, in support of breast cancer awareness!! So we all remember last years game of writing your bra color as your status?.....or the way we like to have our handbag handy? Remember last year so many people took part that it made national news and, the constant updating of status reminded everyone why we're doing this and helped raise awareness!! Do NOT tell any males what the status' mean, keep them guessing!! And please copy and paste (in a message )this to all your female friends to see if we can make a bigger fuss this year than last year!!! I did my part... now YOUR turn ! Go on ladies...and let's have all the males guessing! .. It's time to confuse the men again (not that its really that hard to do :)) Everyone knows it makes their brains work wonders on what we're talkin about!! The idea is to choose the month you were born and the day you were born. Pass this on to the girls only and lets see how far it reaches around. The last one about the bra went round all over the world. So you'll write... I'm (your birth month) weeks and I'm craving (your birth date)!!! as your status. Example: Feb 14th= I'm 2 weeks and craving Choclolate mints!January-1week Febuary-2weeks March-3weeks April4 weeks May-6weeks June-8weeks July-10weeks August-12weeks September-13weeks October-14weeks November-16weeks December-18weeks ..Days of the month: 1-Skittles 2-Starburst 3-Kit-Kat 4-M&M's 5-Galaxy 6-Crunchie 7-Dairy Milk 8-Lollipop 9-Peanut Butter Cups 10-Meat Balls 11-Twizzlers 12-Bubble Gum 13-Hershey's Kisses 14-Chocolate Mints 15-Twix 16-Resse's Fastbreak 17-Fudge 18-Cherry Jello 19-Milkyway 20-Pickels 21-Creme Eggs 22-Skittles 23-Gummy 24-Gummy Worms 25-Strawberry Pop Tarts 26-Starburst 27-Mini Eggs 28-Kit-Kat Chunkie 29-Double Chocolate Chip Chrunchy 30 Rocky Rd 31 Milk Duds
Awww. Did I ruin the "game" and your "fun?" Perhaps you shouldn't send me these things. How about it? Sounds good to me. Yes, I realize I'm a grump. I have my reasons. See post linked above.
Ok ladies, it's that time of year again, in support of breast cancer awareness!! So we all remember last years game of writing your bra color as your status?.....or the way we like to have our handbag handy? Remember last year so many people took part that it made national news and, the constant updating of status reminded everyone why we're doing this and helped raise awareness!! Do NOT tell any males what the status' mean, keep them guessing!! And please copy and paste (in a message )this to all your female friends to see if we can make a bigger fuss this year than last year!!! I did my part... now YOUR turn ! Go on ladies...and let's have all the males guessing! .. It's time to confuse the men again (not that its really that hard to do :)) Everyone knows it makes their brains work wonders on what we're talkin about!! The idea is to choose the month you were born and the day you were born. Pass this on to the girls only and lets see how far it reaches around. The last one about the bra went round all over the world. So you'll write... I'm (your birth month) weeks and I'm craving (your birth date)!!! as your status. Example: Feb 14th= I'm 2 weeks and craving Choclolate mints!January-1week Febuary-2weeks March-3weeks April4 weeks May-6weeks June-8weeks July-10weeks August-12weeks September-13weeks October-14weeks November-16weeks December-18weeks ..Days of the month: 1-Skittles 2-Starburst 3-Kit-Kat 4-M&M's 5-Galaxy 6-Crunchie 7-Dairy Milk 8-Lollipop 9-Peanut Butter Cups 10-Meat Balls 11-Twizzlers 12-Bubble Gum 13-Hershey's Kisses 14-Chocolate Mints 15-Twix 16-Resse's Fastbreak 17-Fudge 18-Cherry Jello 19-Milkyway 20-Pickels 21-Creme Eggs 22-Skittles 23-Gummy 24-Gummy Worms 25-Strawberry Pop Tarts 26-Starburst 27-Mini Eggs 28-Kit-Kat Chunkie 29-Double Chocolate Chip Chrunchy 30 Rocky Rd 31 Milk Duds
Awww. Did I ruin the "game" and your "fun?" Perhaps you shouldn't send me these things. How about it? Sounds good to me. Yes, I realize I'm a grump. I have my reasons. See post linked above.
Tuesday, August 30, 2011
Diagnoses
Sometimes, I just want to scream at people...
YOUR DIAGNOSIS IS NOT WHAT YOU THINK IT IS OR WHAT YOU KEEP CALLING IT!
Yeah, so, hypogammaglobulinemia is NOT a disease. It's a symptom. Just because it has an ICD-9 code doesn't make it a diagnosis. If you have low IgG and still respond to titers, you have selective IgG deficiency. If you have low in several immunoglobulin categories (which is the definition of hypogamma) you have CVID. Furthermore, it's hypogammaglobulinemia NOT hypogammaglobulin anemia. GAH!
I know this kind of precision doesn't matter to most people, but I think it is critical that we all at least speak the same language. If your physician has diagnosed you with this, perhaps it's time to ask some questions. If you look at the IDF website that lists every recognized primary immune deficiency, you will not see hypogammaglobulinemia on the list. It's time for more questions, people, because what you're talking about is a symptom, not the disease. This leads to confusion, etc.
Most of you that read this have noooo idea what I'm talking about. Some of you do, and some of you will differ with me. I'm talking medical literature. Your doctor could, in this case, be wrong.
YOUR DIAGNOSIS IS NOT WHAT YOU THINK IT IS OR WHAT YOU KEEP CALLING IT!
Yeah, so, hypogammaglobulinemia is NOT a disease. It's a symptom. Just because it has an ICD-9 code doesn't make it a diagnosis. If you have low IgG and still respond to titers, you have selective IgG deficiency. If you have low in several immunoglobulin categories (which is the definition of hypogamma) you have CVID. Furthermore, it's hypogammaglobulinemia NOT hypogammaglobulin anemia. GAH!
I know this kind of precision doesn't matter to most people, but I think it is critical that we all at least speak the same language. If your physician has diagnosed you with this, perhaps it's time to ask some questions. If you look at the IDF website that lists every recognized primary immune deficiency, you will not see hypogammaglobulinemia on the list. It's time for more questions, people, because what you're talking about is a symptom, not the disease. This leads to confusion, etc.
Most of you that read this have noooo idea what I'm talking about. Some of you do, and some of you will differ with me. I'm talking medical literature. Your doctor could, in this case, be wrong.
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