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."
Wednesday, January 11, 2012
Yay!
You'll never guess who gets to start yet another course of antibiotics today!?!?! Oh wait. You're reading this, so you probably CAN guess that it's me... especially after our conversation on Monday.
I started having symptoms on Friday of some sort of nastiness... Had IVIG on Monday. I was really excited because it seemed to be working and taking care of the buggies because I felt better yesterday. I guess I burned through that segment of my IVIG, because the bugs are back with a vengeance. Now I have a NASTY cough, all kinds of colors escaping... Let's just summarize and say it's not pretty. Back on antibiotics I go. I was on for most of December, so I'd hoped to have a break. Sigh.
I just want to feel well.
I started having symptoms on Friday of some sort of nastiness... Had IVIG on Monday. I was really excited because it seemed to be working and taking care of the buggies because I felt better yesterday. I guess I burned through that segment of my IVIG, because the bugs are back with a vengeance. Now I have a NASTY cough, all kinds of colors escaping... Let's just summarize and say it's not pretty. Back on antibiotics I go. I was on for most of December, so I'd hoped to have a break. Sigh.
I just want to feel well.
Monday, January 9, 2012
Sinus Complications
Today I had IVIG. I also have another sinus infection. At least that's what seems to be happening. I have a prescription for Cipro that I am to fill and start taking on Wednesday if I'm not feeling better.
The doctor and I discussed the increased infections I've been having, and we've come to the conclusion that there is more testing in my future. Basically, we'll treat this infection then see how long it takes for me to get another one. When I get the next one, especially if it is soon after stopping antibiotics, I will go in for an x-ray of my sinuses so we can see if there's anything structural that could be causing my issues. If there is that possibility, we'll go from there as to what happens next. I'm over all this and wish I could just fix it. Quickly and permanently. I'm tired of being sick.
The doctor and I discussed the increased infections I've been having, and we've come to the conclusion that there is more testing in my future. Basically, we'll treat this infection then see how long it takes for me to get another one. When I get the next one, especially if it is soon after stopping antibiotics, I will go in for an x-ray of my sinuses so we can see if there's anything structural that could be causing my issues. If there is that possibility, we'll go from there as to what happens next. I'm over all this and wish I could just fix it. Quickly and permanently. I'm tired of being sick.
Friday, January 6, 2012
Medical Dictionary
I really don't mind sharing knowledge with people. I don't at all. In fact, I am glad to share what I've learned with others.
What annoys me is when those same people won't take the time to do a simple google search before asking me to do it for them. I get that I'm good at googling and finding information. I am proud of that. If you expect me to help you, though, you have to show at least some initiative, or it gets to be overwhelming. I'm usually finding out things about my own diagnoses or symptoms or what have you. It's hard for me to take on research projects of your common cold. It's a cold. Take Mucinex. GAH!
I will jump in to facebook conversations about symptom remedies, though, because I really feel like people are in the dark about that stuff. The cold medicine aisle is confusing for me and I KNOW what I'm looking for. Specific brand guidance, etc, can be extremely helpful for people, and I realize that, so I try and do what I can. I also try to tell them active ingredients that will help certain symptoms. That leads to some interesting auto-corrects on my phone, as you can imagine.
I just don't want people to feel like I am a substitute for asking their doctor questions, I guess. I have walked a long road of confusion and questions to get here, and I think there's a lot of value in finding these things out for yourself and having a discourse with your medical professionals about what you find. Talk to your doctor. If you can't, find a new one. They're your partner.
What annoys me is when those same people won't take the time to do a simple google search before asking me to do it for them. I get that I'm good at googling and finding information. I am proud of that. If you expect me to help you, though, you have to show at least some initiative, or it gets to be overwhelming. I'm usually finding out things about my own diagnoses or symptoms or what have you. It's hard for me to take on research projects of your common cold. It's a cold. Take Mucinex. GAH!
I will jump in to facebook conversations about symptom remedies, though, because I really feel like people are in the dark about that stuff. The cold medicine aisle is confusing for me and I KNOW what I'm looking for. Specific brand guidance, etc, can be extremely helpful for people, and I realize that, so I try and do what I can. I also try to tell them active ingredients that will help certain symptoms. That leads to some interesting auto-corrects on my phone, as you can imagine.
I just don't want people to feel like I am a substitute for asking their doctor questions, I guess. I have walked a long road of confusion and questions to get here, and I think there's a lot of value in finding these things out for yourself and having a discourse with your medical professionals about what you find. Talk to your doctor. If you can't, find a new one. They're your partner.
Thursday, January 5, 2012
Cytokine Storms
I read a lot of news articles, especially if they have to do with matters of health, new developments, etc. Sometimes this seems like a waste of time, but many times it seems to spark an interest in me to dig a little deeper. Granted, that doesn't always (or even often) happen, but it does make me think.
This article got me thinking about how little we know about how little we actually know about the function of the immune system. The idea of cytokine storms is an intriguing one to me for many reasons. I have many friends with PIDDs who have gradually started experiencing autoimmune co-morbid illness. What if... and here's a fundamental question no one knows the answer to... but what if the whole autoimmune stuff was something akin to a cytokine storm? Our bodies don't make antibodies and the rest of our immune system works overtime and produces this typhoon of overproduced crap that damages our bodies.
The things that stand out to me that gave me pause were the stuff about what happens in a cytokine storm and how the flu virus is contained in the lungs, but we experience other symptoms due to cytokine response. What if that same cytokine response is the reason people with CVID still experience lung damage while on proper IG replacement? Or what if it is the reason we have joint pain (even outside autoimmune diagnosis) Or what if.... there are many things I am thinking it makes sense for. All the repeated infections just make our bodies go completely haywire. It makes sense to me, anyway.
This article got me thinking about how little we know about how little we actually know about the function of the immune system. The idea of cytokine storms is an intriguing one to me for many reasons. I have many friends with PIDDs who have gradually started experiencing autoimmune co-morbid illness. What if... and here's a fundamental question no one knows the answer to... but what if the whole autoimmune stuff was something akin to a cytokine storm? Our bodies don't make antibodies and the rest of our immune system works overtime and produces this typhoon of overproduced crap that damages our bodies.
The things that stand out to me that gave me pause were the stuff about what happens in a cytokine storm and how the flu virus is contained in the lungs, but we experience other symptoms due to cytokine response. What if that same cytokine response is the reason people with CVID still experience lung damage while on proper IG replacement? Or what if it is the reason we have joint pain (even outside autoimmune diagnosis) Or what if.... there are many things I am thinking it makes sense for. All the repeated infections just make our bodies go completely haywire. It makes sense to me, anyway.
Wednesday, January 4, 2012
Medically Supportive Relationships
There are lots of folks out there who do not begin to understand what goes through my head on a daily basis. That's perfectly fine and reasonable, as a majority of people have no need to understand. The people that I am closest to, though, need to have some idea of what goes on with me and what to do in the case of an emergency. The ones who spend the most time with me have that information and more because I've equipped them to help me, should I need it.
But what about the day-to-day stuff? How much does my boyfriend need to understand, for example? This comes up in many discussions online and in many circles offline. I am a little disappointed because the couple who received the painful email has not one, but two sick children. One had a cold and now the other seems to be catching it. The little one had immunizations a week ago. I am praying with every fiber of my being that it wasn't the ones I'm supposed to avoid. I heard all this at dinner last night, when they were discussing the fact that the child had a fever. GREAT. We already had this discussion. If I get sick now, we're going to have to have a conversation again, DO NOT WANT.
Generally, my boyfriend is great about these things, but in this instance, he kind of thinks I'm worried about nothing. I just got over being sick for about 2 months, I would rather not get sick again for a little while. I understand that I seem a little nutty, but it matters to me. I don't want to wind up infected all the time and not being able to work. At least the people in my life are supportive and understanding when I do get infected and when I need to go to the doctor. There's no sense that I'm faking or being manipulative.
On the other side of the coin, there are those whose significant others and families both have no idea and also have no concept of the import of regular doctor visits and proper medical attention. I can't fathom being in a relationship with someone who told me I was not allowed to go see doctors without him. I can't imagine being in a situation where I couldn't get to my doctors. It is a scary thought, but one that many patients face. I do not ever want to be in that position. At least I know if I were stranded somewhere and needed to go, my boyfriend or my father would be first in line to make sure I got there safely.
But what about the day-to-day stuff? How much does my boyfriend need to understand, for example? This comes up in many discussions online and in many circles offline. I am a little disappointed because the couple who received the painful email has not one, but two sick children. One had a cold and now the other seems to be catching it. The little one had immunizations a week ago. I am praying with every fiber of my being that it wasn't the ones I'm supposed to avoid. I heard all this at dinner last night, when they were discussing the fact that the child had a fever. GREAT. We already had this discussion. If I get sick now, we're going to have to have a conversation again, DO NOT WANT.
Generally, my boyfriend is great about these things, but in this instance, he kind of thinks I'm worried about nothing. I just got over being sick for about 2 months, I would rather not get sick again for a little while. I understand that I seem a little nutty, but it matters to me. I don't want to wind up infected all the time and not being able to work. At least the people in my life are supportive and understanding when I do get infected and when I need to go to the doctor. There's no sense that I'm faking or being manipulative.
On the other side of the coin, there are those whose significant others and families both have no idea and also have no concept of the import of regular doctor visits and proper medical attention. I can't fathom being in a relationship with someone who told me I was not allowed to go see doctors without him. I can't imagine being in a situation where I couldn't get to my doctors. It is a scary thought, but one that many patients face. I do not ever want to be in that position. At least I know if I were stranded somewhere and needed to go, my boyfriend or my father would be first in line to make sure I got there safely.
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