I can even hear my own illustrious typing--huzzah!!
OK so we went to Dr. W's and first he checked the site to make sure everything was kosher...we were good to go. Beth says there's still a tiny bit of swelling but that's OK. Apparently roller coasters are kind of a no-go unless I take off the CI and secure it with someone else, but I think I can handle that (not all my friends are coaster riders). So anyway, I go back to see him in 3 months just to make sure everything is OK.
Then I saw Beth. First we checked all the electrodes (22) to make sure they worked, which they did (yay!). Then we did the first map which was threshold markers; basically soft and loud sounds. It's pretty crude, but whatever. So I had to indicate whenever I heard the random beeping in my ear. Now this can take a while to master, but eventually we got it done. Once we had this first map (which took awhile since there were 22 channels to check out), Beth activated the thing and let me try to understand speech with it. At first I heard Beth's voice and a lot of what sounded like radio static. Then her voice sort of merged with the static and I got this cartoony kind of thing, but it didn't really matter, because I knew what the heck she was saying. And I didn't have to slavishly follow her lips and guesstimate!! Huzzah! At first it's still sort of hard for me to understand you but the more you talk to me the more I get used to you. And everyone's voices sort of sound the same (Mickey/Minnie) in the beginning, until I get used to your sound. But the point is, even if it's sort of crude, I can freakin' hear you! Mom and I actually had like real conversation in the car on the way home which DID NOT happen before. Cars were actually the worst because I couldn't look at the person's lips and there was road noise to contend with. But I could hear all of her "father from a Christmas Story" comments on the other drivers. Not sure if that's a good thing or a bad thing (kidding mom). So anyway, keep talking to me so I can get used to you!
I went home and practiced the music which went really well. My singing is already a lot better even though sometimes I get static in my ear. But I can hear the pitches again and that rocks my world! I have choir pracgice tomorrow night so we'll see how it really goes. But Beth said it will just keep getting better b/c the brain is so adaptable. I know mine is.
Had a Parish Council meeting here tonight which was GREAT! I actually got everything! Well, almost everything. Not totally everything. But that's OK. So I am looking forward to work tomorrow to see what happens. I warned my boss that they might all sound liek Mickey. :) But who cares? This is awesome!
I really don't want to take it off. Is that weird???
Tuesday, June 26, 2007
CI...
activation later today. Yeah I'm excited. Hope the darn thing works. :)
Will keep you posted...
Will keep you posted...
Monday, June 25, 2007
Continuing the happy streak...
Another good clinic yay me!
PFTs 60%--haven't been that high since like November of 2006! Yay! DLCO good, NIOX good (like 9.0, so that's good; that's the test that measures inflammation in the lungs), CT/CXR good. Dr. A said there's a tiny tiny polyp thing that showed up on the CT but he's not too worried about it; we'll just watch it.
Weight...ehhhh. Maybe if I can get Dr. A to adjust the prednisone it'll help, because we all know I'm doing the low-fat thing and even working out! So I'm blaming steroids!
Lunch with Amber was awesome, we went to Mongolian BBQ at Easton after her infusion clinic stint.
Tomorrow..CI activation!! Woohoo!
PFTs 60%--haven't been that high since like November of 2006! Yay! DLCO good, NIOX good (like 9.0, so that's good; that's the test that measures inflammation in the lungs), CT/CXR good. Dr. A said there's a tiny tiny polyp thing that showed up on the CT but he's not too worried about it; we'll just watch it.
Weight...ehhhh. Maybe if I can get Dr. A to adjust the prednisone it'll help, because we all know I'm doing the low-fat thing and even working out! So I'm blaming steroids!
Lunch with Amber was awesome, we went to Mongolian BBQ at Easton after her infusion clinic stint.
Tomorrow..CI activation!! Woohoo!
Sunday, June 24, 2007
Another day in Paradise...
Yup I'll be at the resort tomorrow! Woohoo!
The normal--Blood, CXR BUT with a CT scan too (bonus!), PFTs/DLCO, and the visit with Dr. A and Julie. Let the fun begin...well, OK fund starts afterwards with Amber! Yay!!
The normal--Blood, CXR BUT with a CT scan too (bonus!), PFTs/DLCO, and the visit with Dr. A and Julie. Let the fun begin...well, OK fund starts afterwards with Amber! Yay!!
Amazing
I just spent 45 minutes in the gym. Yes, that's right.
45 Minutes.
Without being told to do it.
I'm not quite sure what's possessed me....
45 Minutes.
Without being told to do it.
I'm not quite sure what's possessed me....
Saturday, June 23, 2007
Wicked pics
Me and Mel before we went to Wicked last Wednesday, which. Was. Awesome. I want to go again!
This week!
Busy week in the world of Emily's tx...
Monday, I have an appt. with Dr. A and Crew: labs, CXR, Chest CT (woohoo!), and the normal PFTs/DLCO fun stuff. Tiny possibility of bronch since my two year is approaching (!), but it probably won't happen. It better not, because Amber and I have post-appointment lunch plans!
Tuesday is CI activation day! First I see Dr. W at 1:15 and then Beth starts the CI stuff at 2:30, which takes about 2 hours. Hope all goes well!
To top all this off, I have Parish Council on Monday, Parish Council Retreat Meeting on Tuesday, Choir practice for our pastor's last Mass on Wednesday, Kathy at 4 on Thursday, and Di's Wedding Shower this weekend!! Eek!
Monday, I have an appt. with Dr. A and Crew: labs, CXR, Chest CT (woohoo!), and the normal PFTs/DLCO fun stuff. Tiny possibility of bronch since my two year is approaching (!), but it probably won't happen. It better not, because Amber and I have post-appointment lunch plans!
Tuesday is CI activation day! First I see Dr. W at 1:15 and then Beth starts the CI stuff at 2:30, which takes about 2 hours. Hope all goes well!
To top all this off, I have Parish Council on Monday, Parish Council Retreat Meeting on Tuesday, Choir practice for our pastor's last Mass on Wednesday, Kathy at 4 on Thursday, and Di's Wedding Shower this weekend!! Eek!
Tuesday, June 19, 2007
Monday, June 18, 2007
Friday, June 15, 2007
The market and organ donation
I've posted a few things here before re: organ donation and ways people have come up with to reduce the shortage. Most of them involve paying people for their organs, or having organizations like Lifesavers, where only people who are organ donors them selves can receive organs.
One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):
How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.
First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."
Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?
The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.
If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?
As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.
Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.
One of the most recent articles I've read was in the Dispatch earlier this week. I'm going to have some of the author's comments here, and then my responses (he's in italic):
How did we arrive at this unfortunate situation? As is so often the case, our supposed servants in Washington are at fault. Would-be donors are not supplying as many kidneys as patients need because Congress has decreed that no one may sell their organs. Instead you can only give your organs away. Most people, including me, and almost certainly you, aren't willing to do that for anyone other than a family member or close friend. So people without arelative or friend who can give them a life-saving kidney are in trobuel. They have to take their chances on a very long waiting list, hoping the right person dies at the right time before the clock runs out.
First off, the main fallacy of this argument is that is it based SOLELY on kidney transplants. Now these are, along with bone marrow and some liver and RARELY some lung, able to be accomplished while the donor is alive (the liver regenerates). For heart and lung, obviously, you have to be dead. This is also true for corneas and a pancreas (I think). So selling your organs won't help because you'd basically be saying that you'd kill yourself. Now if you're not willing to go through an operation for someone else, I highly doubt you'd kill yourself.
Congress banned the selling of organs because there are some very, very desperate people who would probably consent to death in order to get money. Which brings up the question, who would pay for these organs? The author suggsts that it would be the patient. Who would determine the price? Oh, the "market."
Which is another issue. As my readers know, organ transplants aren't decided based on ability to pay. They are decided babsed on medical suitablilty, as well as a host of other factors. If you are not a good medical match, you don't get an organ. If you are not going to be compliant, you don't get the organ. If you have a history of noncompliance and an inability to BECOME compliant, then you don't get the organ. You don't even get listed. I saw lots of people in the CF clinic who were totally ineligible for transplant because they had screwed themselves up so completely, there was no way they'd be able to handle it.
Also, many centers have a high survival rate due to the fact that some centers are pickier than others about what organs they accept. Dr. A was always talking about getting me "optimal" organs, whcih drove me crazy at the time, but now I"m glad. How are we going to know how good thse organs are? The donor will have to submit to medical testing. This isn't cheap. So will he make the recipient pay? Or the insurance company? (Which they will be THRILLED about, let me tell you) And would the recipient have to pay before all these tests, or after? What if they just aren't
a good match?
The writer asserts that by legalizing the selling of organs
"they'd be no crisis like there is today." Um, wrong. Maybe not for kidneys, although the things I"ve written above raise serious doubt sin that quarter, but we would still have a vast number of people who are waiting for organs that cannot be obtained by living persons. But, again, the author is unable to see beyond kidney transplants.
If we were really serious about organ donation and decreasing the waiting list, we would make it easier to be a donor. If you are a donor on your license, that's your consent. We shouldn't need to have to get another approval from the family. We could ban smoking just about everywhere so there would be more lung and heart donors. We could ban alcohol use so that they're be more eligible liver donors. Now obviously I'm being a little facetious here. But using the market is not the way to go. There are too many questions, and it would totally upend the system. What aobut those who are NOT waiting for kidneys?
As for Lifesavers programs, those won't help either. It amazes me how so many of these groups don't even focus on the medical side of transplants. What if you die in a car accident and thuis are unable to donate organs due to extreme internal damage? Or you're no eligible to be an organ recipient due to some other factor? The whole "I'll do for you, you do for me" idea sounds good, but, like so many other things (social security, anyone?) it's a good in theory, bad in practice idea.
Sure, waiting for organs is no picnic. I know. But the way UNOS has it set up it is a fair system. Everyone, rich and poor, gets an equal shot. Insurance companies do a good job covering transplants, and it's getting better as they become more "mainstream" in medical treatment. To have people buying and selling organs like they buy Wendy's stock is not only impractical, but would have serious rammifciation for everyone involved in transplant--patients, hospitals, medical staff, OPAs, and others. And they would not be good.
Breakthrough!
I can sleep on my left side tonight! This excites me.
The fact that this excites me--does that make me 1) very boring , 2) very weird or 3) very appreciative of the little things in life? or a combination of all three?
The fact that this excites me--does that make me 1) very boring , 2) very weird or 3) very appreciative of the little things in life? or a combination of all three?
Transplant TV!
Just read on the WaPo site that Treat Williams is starring in a new TNT drama series, "Heartland," about a transplant center in Pittsburgh. How cool is that? He plays (even more cool) a lung transplant surgeon. It's going to be on Mondays at 10. Not sure when it starts...check your papers. But I found this to be waaaaay cool.
If I don't currently get TNT I would upgrade my cable so I could watch this. :)
If I don't currently get TNT I would upgrade my cable so I could watch this. :)
Thursday, June 14, 2007
So much to do...
It's really amazing.
--Father's Day on Sunday--gotta get the gift. :)
--Dad's birthday on Tuesday--see above.
--WICKED on Wednesday! Woohoo!
--Mom's birthday on Friday--get the gift!
--Next Monday: Dr. A appt. and lunch w/ Amber!! And PC meeting
--Tuesday: CI ACTIVATION! And PC meeting, but here.
--Saturday: Diane's wedding shower in Pittsburgh--gotta get, um, the gift!
Whew.
And then there's the regular house chores, the writing of Lily and Archibald (working title), which is coming along nicely (I think). And the blogging and the reading...all sorts of fun things to do.
Oh, and a little thing called work. You know, employment.
I will take some pics of the new things I've got up around the apt. and post them here...probably later today. My camera needs new batteries...always more to do.
And ofr course there is the very tempting Vera Bradley sale at Feather Your Nest....
--Father's Day on Sunday--gotta get the gift. :)
--Dad's birthday on Tuesday--see above.
--WICKED on Wednesday! Woohoo!
--Mom's birthday on Friday--get the gift!
--Next Monday: Dr. A appt. and lunch w/ Amber!! And PC meeting
--Tuesday: CI ACTIVATION! And PC meeting, but here.
--Saturday: Diane's wedding shower in Pittsburgh--gotta get, um, the gift!
Whew.
And then there's the regular house chores, the writing of Lily and Archibald (working title), which is coming along nicely (I think). And the blogging and the reading...all sorts of fun things to do.
Oh, and a little thing called work. You know, employment.
I will take some pics of the new things I've got up around the apt. and post them here...probably later today. My camera needs new batteries...always more to do.
And ofr course there is the very tempting Vera Bradley sale at Feather Your Nest....
Tuesday, June 12, 2007
Two weeks!
Well less than two weeks now (since it's 9:30...) until my CI activation! Woohoo! I go on the 26th, first to have Dr. W check out the incision and surgical stuff, and then to have Beth (My CI Audiologist) work her magic as we get the first "Map" of my hearing done. Apparently this will involve another lovely audiology map test, checking my hearing before we activate the CI to make sure nothing's changed there. I hate those tests, they make me feel so stupid, because you have repeat words back. Well if you can't hear the word or understand it...I usually just end up sitting there going, "um..." But anyway. These appointments take about two hours so we'll see what happens. Hopefully it's good stuff!
Sunday, June 10, 2007
transplants in popular culture: The Last Summer (of You and Me)
OK, if you want to read the above book, haven't yet, and hate spoilers, CLEAR OUT.
Room clear?
OK Good.
I just finished reading this book last night. I had read a lot of good things about it and I do like my modern fiction as well as the greatness of Jane. The plot revolves around two sisters, Riley (24) and Alice (21), and their friend, Paul (who I guess is around 22, 23). They have always spent their summers together at a Long Island beach, but now a relationship is springing up between Alice and Paul.
Anyway, Riley ends up having congestive heart failure and a lot of damage to her heart, possibly due to the two bouts of rheumatic fever she's had, the one recently caused by failing to finish a course of antibiotics for strep throat. Riley ends up getting sicker and sicker and is eventually placed on the heart transplant list. Her illness, and the secrecy she has sworn Alice to (she asks Alice not to tell Paul), leads to the disintegration of Paul and Alice's fledgling romance, at least until after things with Riley are resolved.
Now I am always glad to see organ donation in literature, movies, etc. in a positive/accurate way, since it has potential to bring the cause before a lot of people in a way that non-profits often can't. This particular writer, for example, wrote the widely popular series The Sisterhood of the Traveling Pants, so she already has a large following, and since this book is more adult than those, she has the potential to attract new readers (like the Sisterhood's readers' mothers). So I am glad for that.
However. (You just knew that was coming, didn't you?)
I do wish that the author had done some more research or presented the facts of transplantation a bit more clearly for her audience. There are a few things that are glaringly questionable:
1) From the outset it's made clear that Riley hates taking pills and is ambivalent about following rules. She doesn't finish her first round of antibiotics because she loses her beach bag, where the drugs were placed. Yet she doesn't try to get a new script. When you're evaluated for transplant, compliance is one of the main things centers consider, because they're not going to give an organ to someone who isn't going to take care of it. Riley's history of not liking to take drugs, as well as her lack of compliance in something as simple as treating strep, would not make her a good candidate.
2) Riley is a lifeguard; in the novel, she continues to swim even after she is placed on the list, in fact, she swims right up until...well, whatever. Now I have no doubt that that can happen. Heck, I worked until two days before my transplant! It's important to live your life as much as possible while you're waiting, or you'll go nuts. But she is portrayed as extremely sick; the author talks about her lips and complexion being bluish. She would've been on home oxygen therapy at some point, and thus unable to swim.
3) The family gets a beeper. NOTE TO AUTHORS/MOVIE WRITERS: You don't get a beeper anymore! For most centers it's too expensive, and with everyone having cell phones, you just get their numbers. Karen had every single number in our family, including Bryan and Mel's cell phones, so she could ALWAYS get ahold of someone. Which leads to point
4) Riley gets the call for a heart but she left her beeper at home and thus missed it. Note that this story takes place in TODAY'S time period. As per point 3 this would not have happened. The coordinator would've called all the other numbers on the list and they would've found Riley. Now whether or not she would've gotten the heart could've been done more realistically by having it be a 'dry run' as opposed to Riley not having her beeper with her and missing it that way. Because only having one number to call wouldn't have happened. The center did also call the house but, as usual in novels, no one was home.
OK I think that's it. Like I said, I'm glad to see transplantation becoming more prevalent in the media and popular culture. And I am aware of the dramatic element--that is, wanting to up the drama so that it's compelling. When I used to watch ER they usually had at least one CF case a year, and of course they were always pathetically sick. It made for good drama; it made explaining to my friends that I could have a normal life difficult.
Room clear?
OK Good.
I just finished reading this book last night. I had read a lot of good things about it and I do like my modern fiction as well as the greatness of Jane. The plot revolves around two sisters, Riley (24) and Alice (21), and their friend, Paul (who I guess is around 22, 23). They have always spent their summers together at a Long Island beach, but now a relationship is springing up between Alice and Paul.
Anyway, Riley ends up having congestive heart failure and a lot of damage to her heart, possibly due to the two bouts of rheumatic fever she's had, the one recently caused by failing to finish a course of antibiotics for strep throat. Riley ends up getting sicker and sicker and is eventually placed on the heart transplant list. Her illness, and the secrecy she has sworn Alice to (she asks Alice not to tell Paul), leads to the disintegration of Paul and Alice's fledgling romance, at least until after things with Riley are resolved.
Now I am always glad to see organ donation in literature, movies, etc. in a positive/accurate way, since it has potential to bring the cause before a lot of people in a way that non-profits often can't. This particular writer, for example, wrote the widely popular series The Sisterhood of the Traveling Pants, so she already has a large following, and since this book is more adult than those, she has the potential to attract new readers (like the Sisterhood's readers' mothers). So I am glad for that.
However. (You just knew that was coming, didn't you?)
I do wish that the author had done some more research or presented the facts of transplantation a bit more clearly for her audience. There are a few things that are glaringly questionable:
1) From the outset it's made clear that Riley hates taking pills and is ambivalent about following rules. She doesn't finish her first round of antibiotics because she loses her beach bag, where the drugs were placed. Yet she doesn't try to get a new script. When you're evaluated for transplant, compliance is one of the main things centers consider, because they're not going to give an organ to someone who isn't going to take care of it. Riley's history of not liking to take drugs, as well as her lack of compliance in something as simple as treating strep, would not make her a good candidate.
2) Riley is a lifeguard; in the novel, she continues to swim even after she is placed on the list, in fact, she swims right up until...well, whatever. Now I have no doubt that that can happen. Heck, I worked until two days before my transplant! It's important to live your life as much as possible while you're waiting, or you'll go nuts. But she is portrayed as extremely sick; the author talks about her lips and complexion being bluish. She would've been on home oxygen therapy at some point, and thus unable to swim.
3) The family gets a beeper. NOTE TO AUTHORS/MOVIE WRITERS: You don't get a beeper anymore! For most centers it's too expensive, and with everyone having cell phones, you just get their numbers. Karen had every single number in our family, including Bryan and Mel's cell phones, so she could ALWAYS get ahold of someone. Which leads to point
4) Riley gets the call for a heart but she left her beeper at home and thus missed it. Note that this story takes place in TODAY'S time period. As per point 3 this would not have happened. The coordinator would've called all the other numbers on the list and they would've found Riley. Now whether or not she would've gotten the heart could've been done more realistically by having it be a 'dry run' as opposed to Riley not having her beeper with her and missing it that way. Because only having one number to call wouldn't have happened. The center did also call the house but, as usual in novels, no one was home.
OK I think that's it. Like I said, I'm glad to see transplantation becoming more prevalent in the media and popular culture. And I am aware of the dramatic element--that is, wanting to up the drama so that it's compelling. When I used to watch ER they usually had at least one CF case a year, and of course they were always pathetically sick. It made for good drama; it made explaining to my friends that I could have a normal life difficult.
Saturday, June 09, 2007
Yes!
You know how I like to complain about washing my hair when the port's accessed? Or I'm in the hospital? Well I can complain no more.
Tonight I found shampoo that you spray on. And you don't have to wash off! It just absorbs oil and you are on your merry way! Now I haven't tried it yet (duh), and I imagine that at some point my hair would require a real wash, but this is great! For those of you who are curious, it's Frederick Fekkai's Summer hair Wash and Wear instant shampoo spray ($20), and it can be found at CO Bigelow, larger Bath and Body Works and larger Victoria's Secrets (Like ones that sell a lot of beauty stuff). Or, I'm sure, online.
Tonight I found shampoo that you spray on. And you don't have to wash off! It just absorbs oil and you are on your merry way! Now I haven't tried it yet (duh), and I imagine that at some point my hair would require a real wash, but this is great! For those of you who are curious, it's Frederick Fekkai's Summer hair Wash and Wear instant shampoo spray ($20), and it can be found at CO Bigelow, larger Bath and Body Works and larger Victoria's Secrets (Like ones that sell a lot of beauty stuff). Or, I'm sure, online.
Duck Fuzz
Remember how I mentioned that for the CI surgery, a small part of my head had to be shaved? You can't see it because the other layers cover it, but it feels odd to have hair and then...no hair
However I do enjoy running my fingers over it. We've reached the point now where I guess it's about, oh, maybe 1/4 inch to 1/2 inch long, so it feels like a little boy's crew cut. Or duck fuzz. Or something. But it's kinda cool. I just have to make sure I don't turn into a head-rubbing freak. :) Since no one can see it it would just look odd.
However I do enjoy running my fingers over it. We've reached the point now where I guess it's about, oh, maybe 1/4 inch to 1/2 inch long, so it feels like a little boy's crew cut. Or duck fuzz. Or something. But it's kinda cool. I just have to make sure I don't turn into a head-rubbing freak. :) Since no one can see it it would just look odd.
Memeing...again
Got this from Adoro and I liked it!
Here are the rules: Share four things that were new to you in the past four years. Four things you learned or experienced or explored for the first time in the past four years. Then share four things you want to try new in the next four years.
Four New Things in the Past Four Years: (2003-2007)
1. I graduated from college
2. I got new lungs. :)(OK maybe that should have been first)
3. I got my apartment
4. I got my first real job
Four Things in the Next Four Years: (2008-2012)
1. I hope to be married. :)
2. I hope to have something published other than in our local papers :)
3. I will have bought a house/townhouse/something
4. Maybe a Master’s? We’ll see…
Here are the rules: Share four things that were new to you in the past four years. Four things you learned or experienced or explored for the first time in the past four years. Then share four things you want to try new in the next four years.
Four New Things in the Past Four Years: (2003-2007)
1. I graduated from college
2. I got new lungs. :)(OK maybe that should have been first)
3. I got my apartment
4. I got my first real job
Four Things in the Next Four Years: (2008-2012)
1. I hope to be married. :)
2. I hope to have something published other than in our local papers :)
3. I will have bought a house/townhouse/something
4. Maybe a Master’s? We’ll see…
Friday, June 08, 2007
A bag of emotions--updated
**This may be a rambling piece. If it is, I apologize.
One of my job responsibilities is reading and cutting the daily papers from around the state every morning. Two of our interns help me out, but since I've been doing this for almost four years now I'm extremely adept at cutting and clipping, so I usually do about 3-5 papers a day. This means I get to read many, many editorials and op-eds, which can have the unfortunate tendency of "getting my dander up." It hasn't happened for awhile though, and on some topics I've almost become immune to the idiocy that's spouted off like gospel.
But today that didn't happen.
The Cincy Enquirer runs a regular feature called "Your Voice" where readers can write their own op-ed columns. Generally this is a pretty cool idea and it's nice to read what "ordinary" people are thinking about current issues.
Today, however, not so cool.
The author of today's piece is an "environmental activist" and was writing about abortion. Now that should've told me everything I needed to know right away. But I am a glutton for punishment, apparently, so I read the thing. Even though I tried to resist.
She wrote about how pro-lifers really don't care about the woman's life. That sometimes abortion is necessary, even though no one wants it. Because it will save a child a life of suffering, or a slow death, or keep it from being abused by its parents because it is unwanted, or ending up in jail because it wasn't raised right. And then she gives us Jocelyn Elders: "every child should be a planned and wanted child."
Then there's the footnote that says she had two brothers that died of CF.
Well that just about did it for me.
I don't even know where to begin. I've covered the whole idea of the selfishness involved in abortion, to some degree--the idea that your life cannot be "interrupted" by a baby. As Mother Teresa said, "It is a poverty that a child must die so you may live as you wish." I've also talked about how you've made the "choice" to possibly hvae a baby the minute you had sex. The Pro-life movement emphasizes responsibility. Once the baby is conceived, once that sperm meets that egg, you've got a person. Deal with it appropriately--by not killing it. Please. If you don't want kids, DON'T HAVE SEX. Thank you.
It's the stuff about the child "suffering" that gets me. Who is SHE--who are any of us?--to say that?! How arrogant! As Charles Dickens wrote in A Christmas Carol:
Will you decide what men shall live, what men shall die? It may be that, in the sigght of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh, God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!
It is the height of arrogance. How blind we are. So that child doesn't deserve love, even if it is only for a few hours (i.e., as seen in Karen Santorum's elegiac Letters to Gabriel?)? More proof of the softness of our age. Suffering in any form is seen as so horrible that we would rather die. That's crazy talk.
And then the CF reference.
I'm confused by it. Does it serve as some sort of qualification for what she writes? If so she's insulting thousands of people with CF and their families. I certainly have never wished that I had never been born. I certainly never wanted my parents to have killed me. I love my life, always have. Sure, there are some parts that have been less than fun. But I would rather have had my life, with those moments, than no life at all.
CF isn't a cakewalk. There are complications, strange things, multiple hospitalizations, and emotional issues that most people will never go through in a lifetime, let alone as a child/teenager/young adult. You have to grow up fast. Your family's dynamic is forever altered. But the life is still worth living.
I cannot believe that this writer, who had two brothers with CF, could write a piece like this. I don't think she's implying that we should all be killed off. But it's just chilling to think of it. Didn't she see the rewards that come to a family from these situations? The growth? The bonding? The way you have to take care of each other? Either she missed it or it didn't happen.
We can be so selfish. These babies want nothing but to be loved and cared for. And to be given a chance. If you don't want the baby, give it up for adoption. I'll take it. I know many, many people who would take it. Killing the child is not the answer. And, in the long run, it will probably just make things worse. Groups like Project Rachel attest to the damage abortion does to women. So where is the benefit to the practice?
Easy answer: there isn't one.
I realize then that we never have children, we receive them. And sometimes it's not for quite as long as we would have expected or hoped. But it is still far better than never having had those children at all. 'Kate,' I confess. 'I'm so sorry.'
She pushes back from me, until she can look me in the eye. 'Don't be,' she says fiercely. 'Because I'm not.' She tries to smile, tries so damn hard. 'It was a good one, Mom, wasn't it?'
I bite my lip, feel the heaviness of tears. 'It was the best,' I answer."
--Jodi Picoult, My Sister's Keeper
Stories
Some of you are aware that I like to write creatively. I took classes in high school and college and have kept a journal since I was about 11. Fiction writing has always appealed to me, as has memoir/autobiography (as we know).
So when I turned 25 I got the crazy idea to try to write 25 short stories during this year. Don't ask me where it came from, it just did. So I've begun and I'm up to five. Two are actually accomplished and three are still being worked on. It's the most current that's given me the thought that it could (emphasis on COULD) grow to be something more than a short story.
I love the musical The Secret Garden. It has a fantastically complex score, a wonderful book and great characters. When I was in college, "How Could I Ever Know?" was standard recital fare for all sopranos, while "Hold On" was a chestnut for the altos. And for the men, "Lily's Eyes" is one of the best. duets. ever. I also loved the book as a child and even had a "secret garden journal", which was beautiful--creamy ivory pages, original illustrations and quotes from the novel throughout.
Anyway, my story idea is how Lily and Archibald met. They are Mary's aunt and uncle, whom Mary is sent to live with in the novel. (Well, OK, just the uncle since Lily's dead) The musical has a number called "The Man Who Came to My Valley" where Lily and Archie recollect their first meeting, until Mary stumbles upon her uncle, alone, in the portrait gallery (Lily is a ghost in the musical who appears throughout). The musical's other numbers also provide background into their relationship, as well as Lily's relationship w/ her sister, Rose, and Archie's with his brother, Neville.
I thought it would be awesome to use some of this material, the novel, and, of course, my own ideas to flesh this out. The musical actually focuses more on the adults than the kids, which I enjoyed, and lead me to think of this idea. So that's what I'm working on right now. Of course that means a re-read of The Secret Garden and ordering a copy of the musical's book on Amazon...like I need an excuse!!
I'm very excited about this project...will keep you posted...
So when I turned 25 I got the crazy idea to try to write 25 short stories during this year. Don't ask me where it came from, it just did. So I've begun and I'm up to five. Two are actually accomplished and three are still being worked on. It's the most current that's given me the thought that it could (emphasis on COULD) grow to be something more than a short story.
I love the musical The Secret Garden. It has a fantastically complex score, a wonderful book and great characters. When I was in college, "How Could I Ever Know?" was standard recital fare for all sopranos, while "Hold On" was a chestnut for the altos. And for the men, "Lily's Eyes" is one of the best. duets. ever. I also loved the book as a child and even had a "secret garden journal", which was beautiful--creamy ivory pages, original illustrations and quotes from the novel throughout.
Anyway, my story idea is how Lily and Archibald met. They are Mary's aunt and uncle, whom Mary is sent to live with in the novel. (Well, OK, just the uncle since Lily's dead) The musical has a number called "The Man Who Came to My Valley" where Lily and Archie recollect their first meeting, until Mary stumbles upon her uncle, alone, in the portrait gallery (Lily is a ghost in the musical who appears throughout). The musical's other numbers also provide background into their relationship, as well as Lily's relationship w/ her sister, Rose, and Archie's with his brother, Neville.
I thought it would be awesome to use some of this material, the novel, and, of course, my own ideas to flesh this out. The musical actually focuses more on the adults than the kids, which I enjoyed, and lead me to think of this idea. So that's what I'm working on right now. Of course that means a re-read of The Secret Garden and ordering a copy of the musical's book on Amazon...like I need an excuse!!
I'm very excited about this project...will keep you posted...
Wednesday, June 06, 2007
I am the Household Queen
Today was like "Let's Rehabilitate the Apartment that I Neglected for Two Weeks Whilst I Lived With My Parents" day.
**I went to Feather Your Nest (great store in downtown Pickerington, antiques, Stonewall Kitchen and Vera Bradley!) for some mango chutney (new recipe I want to try uses it) and a soap dish for my kitchen.
**New cookbook on sale at Barnes and Noble.
**TJ's trip for staples--I cleaned out my fridge and tossed a lot of stuff, thereby necessitating the trip. But really, do I need a reason to go to TJ's? I think not.
**MASSIVE kitchen cleaning. Cleaned cabinets, cleaned stove top, cleaned a floor a bit. Tomorrow I'm going through the cupboards.
I love getting off work at a reasonable time. :) Nopw all that's left is the disaster known as my Kitchen Table...when you can see it...
**I went to Feather Your Nest (great store in downtown Pickerington, antiques, Stonewall Kitchen and Vera Bradley!) for some mango chutney (new recipe I want to try uses it) and a soap dish for my kitchen.
**New cookbook on sale at Barnes and Noble.
**TJ's trip for staples--I cleaned out my fridge and tossed a lot of stuff, thereby necessitating the trip. But really, do I need a reason to go to TJ's? I think not.
**MASSIVE kitchen cleaning. Cleaned cabinets, cleaned stove top, cleaned a floor a bit. Tomorrow I'm going through the cupboards.
I love getting off work at a reasonable time. :) Nopw all that's left is the disaster known as my Kitchen Table...when you can see it...
Tuesday, June 05, 2007
We're your friends!
H/t: Wheelie Catholic
This is a lovely bit of "right to die" mumbo-jumbo from the left (actually, the Huffington Post): (my comments in bold)
Russell Shaw
Disability Advocates, Get Over Your Fear of Us Right-To-Die Folks
I live in Oregon, the only U.S. state in which physician-assisted suicide is legal.
I recall a conversation I had a few years ago with one of the major advocates for this legislation. She told me that some of the most vocal opponents were disability rights advocates.
In this, the week that admittedly creepy Jack Kevorkian is released from prison, we're hearing murmurings again from the disability community.
According to the website DiversityInc:
"The furor over Kevorkian's release is being led by Not Dead Yet, a national disability organization that views assisted suicide as the "ultimate form of discrimination (that) has been ignored by most media and courts." The organization states that "For some, a disabled person's suicidal cry for help was ignored, misinterpreted, or even exploited by the right-to-die movement."
Admittedly, I don't have the immediate personal sensitivity to this issue that some disabled persons might have. But as to physician-assisted suicide, I have noticed the cascading inefficacy of pain killer pharmaceuticals administered to some dying friends and loves in their last days on Earth. Look, pain control is NOT an issue. At all. There are plenty of drugs that will make you pain-free. Now, they may be in doses that are dangerous, or may impair cognitive function/breathing/etc., but if you're dying, what do you want? To be sane and in pain, or out of it and pain-free? Becoming a junkie isn't a major concern at this point. To say that pain is THE issue is, um, wrong.
From where I sit, I don't see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity oh the magic word!to those whose pain can no longer be nursed which is NOT possible, at all, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.If you want to stop treating us like second-class citizens, then build more restrooms for us. Don't stare at IV ports or insulin pumps or wheelchairs. Don't ask stupid questions. Do/don't do a lot of things. But killing isn't really an option.
Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?" Well not to put too fine a point on it...but let's look at it this way: the number of childrne born with Downs Syndrome is decreasing. It's not because we've found a cure, kids.
While I don't have the life experience to see things from your perspective, I have to tell the disability advocate community that such a mind-set strikes me as a bit paranoid. I liken it to the fear in some minority communities that some forms of contraception are really efforts at medically sanctioned genocide. Have you read Margaret Sanger? Have you read early abortion-rights literature? That's what it was, honey. It was an attempt to limit the growth of minority, specifically black, populations. And they weren't exactly subtle about it.
Disability advocates, please understand we right-to-die types are not your enemies. We are your friends. Suuuuure. OK.
As they say, "With friends like these, who needs enemies?"
This is a lovely bit of "right to die" mumbo-jumbo from the left (actually, the Huffington Post): (my comments in bold)
Russell Shaw
Disability Advocates, Get Over Your Fear of Us Right-To-Die Folks
I live in Oregon, the only U.S. state in which physician-assisted suicide is legal.
I recall a conversation I had a few years ago with one of the major advocates for this legislation. She told me that some of the most vocal opponents were disability rights advocates.
In this, the week that admittedly creepy Jack Kevorkian is released from prison, we're hearing murmurings again from the disability community.
According to the website DiversityInc:
"The furor over Kevorkian's release is being led by Not Dead Yet, a national disability organization that views assisted suicide as the "ultimate form of discrimination (that) has been ignored by most media and courts." The organization states that "For some, a disabled person's suicidal cry for help was ignored, misinterpreted, or even exploited by the right-to-die movement."
Admittedly, I don't have the immediate personal sensitivity to this issue that some disabled persons might have. But as to physician-assisted suicide, I have noticed the cascading inefficacy of pain killer pharmaceuticals administered to some dying friends and loves in their last days on Earth. Look, pain control is NOT an issue. At all. There are plenty of drugs that will make you pain-free. Now, they may be in doses that are dangerous, or may impair cognitive function/breathing/etc., but if you're dying, what do you want? To be sane and in pain, or out of it and pain-free? Becoming a junkie isn't a major concern at this point. To say that pain is THE issue is, um, wrong.
From where I sit, I don't see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity oh the magic word!to those whose pain can no longer be nursed which is NOT possible, at all, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.If you want to stop treating us like second-class citizens, then build more restrooms for us. Don't stare at IV ports or insulin pumps or wheelchairs. Don't ask stupid questions. Do/don't do a lot of things. But killing isn't really an option.
Could the real issue for some disability advocates be that ongoing life experiences have convinced you that able-bodied citizens feel you are "in the way," and that right-to-die types have as the ultimate goal more tools to get you, our disabled brothers and sisters, "out of the way?" Well not to put too fine a point on it...but let's look at it this way: the number of childrne born with Downs Syndrome is decreasing. It's not because we've found a cure, kids.
While I don't have the life experience to see things from your perspective, I have to tell the disability advocate community that such a mind-set strikes me as a bit paranoid. I liken it to the fear in some minority communities that some forms of contraception are really efforts at medically sanctioned genocide. Have you read Margaret Sanger? Have you read early abortion-rights literature? That's what it was, honey. It was an attempt to limit the growth of minority, specifically black, populations. And they weren't exactly subtle about it.
Disability advocates, please understand we right-to-die types are not your enemies. We are your friends. Suuuuure. OK.
As they say, "With friends like these, who needs enemies?"
Another meme...because I like them!
From Nutmeg:
“For this meme, each player lists 8 facts/habits about themselves. The rules of the game are posted at the beginning before those facts/habits are listed. At the end of the post, the player then tags 8 people and posts their names, then goes to their blogs and leaves them a comment, letting them know that they have been tagged and asking them to read your blog.”
**I must read something before I go to bed at night. Even if it's only for a few minutes, I cannot go to bed without reading.
**I make really, really good pasta, taught to me by my father and he learned from his mother/grandmother before him. So, therefore, I am making you REAL Italian pasta and not this quasi-pasta stuff so many places give you!
**I love to scrapbook and take pictures.
**I cannot draw.
**I always got "refrains from unnecessary talking" checked on my grade school report cards. It didn't do much to stop the habit, apparently.
**I bite my nails. Always have. Always will. Can't stop.
**My first theatrical role was as Snow White in my preschool's Parents' Day production. I got nervous and hid behind the kitchen set. :)
**My middle name is spelled with only one "l". People mess that up a lot. But not as often as they mispronounce/misspell my last name. That's annoying because it's not that hard!
Um, I don't know eight people to tag. So hmmm. Anyone who feels like it. :) But come back here and let me know you did it.
“For this meme, each player lists 8 facts/habits about themselves. The rules of the game are posted at the beginning before those facts/habits are listed. At the end of the post, the player then tags 8 people and posts their names, then goes to their blogs and leaves them a comment, letting them know that they have been tagged and asking them to read your blog.”
**I must read something before I go to bed at night. Even if it's only for a few minutes, I cannot go to bed without reading.
**I make really, really good pasta, taught to me by my father and he learned from his mother/grandmother before him. So, therefore, I am making you REAL Italian pasta and not this quasi-pasta stuff so many places give you!
**I love to scrapbook and take pictures.
**I cannot draw.
**I always got "refrains from unnecessary talking" checked on my grade school report cards. It didn't do much to stop the habit, apparently.
**I bite my nails. Always have. Always will. Can't stop.
**My first theatrical role was as Snow White in my preschool's Parents' Day production. I got nervous and hid behind the kitchen set. :)
**My middle name is spelled with only one "l". People mess that up a lot. But not as often as they mispronounce/misspell my last name. That's annoying because it's not that hard!
Um, I don't know eight people to tag. So hmmm. Anyone who feels like it. :) But come back here and let me know you did it.
Monday, June 04, 2007
Work!
Back to work today--I even got there early! Well, OK , part of that was due to my stupid uneven head which led to an inability to sleep (I am so doing the Tylenol PM tonight kids. So definitely.), which lead to it being pretty easy to get up when the alarm went off.
I am all caught up, and even started doing some regular work, so I am proud of myself. I thought I'd be super-behind since we were supposed to be busy today. Don't get me wrong, we were busy, but the boys had most of it in hand and didn't need reinforcements, so I was able to catch up and get organized. Fantastic.
Head feeling OK, it can still be a pain in the butt though. I'm wary of starting pilates/yoga again due to some of the positions my head would be in. I suppose I could modify them, or just skip them. Parish Council went long tonight so I'll just do some minimal stuff and try the modified yoga tomorrow.
Hoping to get some letter writing/reading/journaling in before bed...started A Wonderful Welcome to Ozlast night by reading the Gregory Maguire introduction, and am hoping to read the beginning of Mansfield Park tonight.
Oh, btw, saw the bill for my surgery today....$77 THOUSAND. Can I say how much I love my insurance company right now? We don't have to pay any of it. Mwah insurance company. Mwah.
I am all caught up, and even started doing some regular work, so I am proud of myself. I thought I'd be super-behind since we were supposed to be busy today. Don't get me wrong, we were busy, but the boys had most of it in hand and didn't need reinforcements, so I was able to catch up and get organized. Fantastic.
Head feeling OK, it can still be a pain in the butt though. I'm wary of starting pilates/yoga again due to some of the positions my head would be in. I suppose I could modify them, or just skip them. Parish Council went long tonight so I'll just do some minimal stuff and try the modified yoga tomorrow.
Hoping to get some letter writing/reading/journaling in before bed...started A Wonderful Welcome to Ozlast night by reading the Gregory Maguire introduction, and am hoping to read the beginning of Mansfield Park tonight.
Oh, btw, saw the bill for my surgery today....$77 THOUSAND. Can I say how much I love my insurance company right now? We don't have to pay any of it. Mwah insurance company. Mwah.
Sunday, June 03, 2007
Back to life
I am back at the lovely apartment, with most of the unpacking done, and getting ready for what will be a wild week at work...yay Budget Highlight Doc! And Controlling Board tomorrow so we will be a busy place. But it will be nice to get back to work and be a productive person again (not that reading like a fiend and shopping occasionally didn't make me productive... :).
Friday, June 01, 2007
Ha ha!
All right, stitches out. Woohoo! I don't have to go back to see Dr. W for another 3 weeks, which we managed to aline w/ the day I get my C.I. activated, so I'll be spending a lot of time there on the 26th, let me tell you. But it's better than going back and forth...back and forth...
I know I've said this before, but even after the initial activation on the 26th, I still will not have great hearing. In fact, I have no expectations. I'm guessing it will be better than it is now, which is, essentially, no hearing in my left ear. So anything is an improvement. It will take many months until it is really where we want it, and adjustments continue for up to one year post-surgery. So warning to all of you who know me--the Bionic Hearing is not Immediate. :)
In other news...working in War and Peace, which, I've decided, is actually just a bunch of stories woven together, and as such, it's not a bad read. Also reading The Grapes of Wrath which I am (shockingly) really enjoying. Also finished P&P and will start Mansfield Park sometime this weekend. Whew. Good thing we didn't do surgery on my eyes!
I know I've said this before, but even after the initial activation on the 26th, I still will not have great hearing. In fact, I have no expectations. I'm guessing it will be better than it is now, which is, essentially, no hearing in my left ear. So anything is an improvement. It will take many months until it is really where we want it, and adjustments continue for up to one year post-surgery. So warning to all of you who know me--the Bionic Hearing is not Immediate. :)
In other news...working in War and Peace, which, I've decided, is actually just a bunch of stories woven together, and as such, it's not a bad read. Also reading The Grapes of Wrath which I am (shockingly) really enjoying. Also finished P&P and will start Mansfield Park sometime this weekend. Whew. Good thing we didn't do surgery on my eyes!
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