I am a constant reader - we all know this. Without reading, and being able to escape into books for all these years (and now into blogs), I can't imagine what would have happened to me. I've decided to start sharing some of the more interesting/unusual/entertaining things I'm reading here, because keeping the two places seperate really doesn't make any sense to me.
So, here's some stuff I've read this weekend that I think is worth sharing with all of you:
First, this passage from my St. Jude's Children's Research Hospital 2007 Holiday Hope Gift Book: Breakthrough discoveries at St. Jude have helped push survival rates for childhood cancers from less than 20 percent to more than 70 percent overall. In fact, in 1962, the survival rate for acute lymphoblastic leukemia (ALL) was only 4 percent. Today it stands at 94 percent at St. Jude. I had to go back and reread that about 6 times, because it was staggering - in the past 45 years, the most common form of leukemia in children under 19 has become nearly 100% curable. Not all of the advances in treatment were made at St. Jude, obviously, but I'm so impressed with their facility, with their philosophy, and with their standard of care. I've done some fundraising for them in the past (Hello, would you like to receive a form letter from me asking you to send them money? Because I can totally send you one...), but I honestly don't get why people aren't just shouting statistics like that as they pass each other in hallways - "Up to 94%!! Can you believe it??" - (See, Janice, statistics could be good for something, I guess.) Anyways, please check out their site , check out their partners in Thanks & Giving, and do a little shopping, if you feel like it.
Next, and I hestitate to even think this in the same blog post as the whole St. Jude thing, but I'm not one to shortchange my readers, and besides your minds are probably as all over the place as my own. I've been on a Lisa Kleypas kick, just recently ~ Having started her Wallflower series completely out of order (and still having only the vaguest idea of what happens in Autumn), and when my mum went to the local library's book sale yesterday (which, unfortunately takes place in a tiny little room), I gave her that name to add to our list. She came back with Suddenly You, and I read it this morning. -- Just as an aside here, I find that Lisa Kleypas' historicals seem to all have gorgeous covers, and I'm sure other authors are routinely jealous. -- Anyways, the book was good, I loved the plot (30 year old spinster decides that she's had enough of being untouched and seeks out a local madam to help her out, local madam fascilitates misunderstandings to send a gentleman to her door at the appointed time, I bet you can happen when the gentleman shows up) & the characters were interesting, but this is not my favorite Kleypas, by far. I will say that it was certainly one of the more erotically written titles I've read by the author though - not just in the number of scenes, but in the content of those scenes. I don't think I'll look at raspberries the same way for quite a while...
I've also been doing some reviewing for another site (where I use my real name, so I can't show you the link, unfortunately), and one of the books I had to read was Understanding Sibling Rivalry the Brazelton way, which was pretty good. It was helpful to see experts write about sibling rivalry as something "natural and unavoidable," which we all know it is, and also to get their takes on how to best handle certain situations. The rivalry between Lil Girl and her big brother has been going on since he found out she was coming, and now that she's getting old enough to hold her own in her interactions with him, it's pretty interesting to watch how they squabble, but also how he's learning to show her compassion and understanding and she's learning more patience. Of course, she's also coming right into her "throwing myself on the floor is a great way to get what I want" years (which she's already started, and I am totally ignoring) while he's still stuck in his "I can't believe I have to share my room with this little loud annoying thing" stage. Which I didn't get over until I left for college... ok, so maybe I'm still living in fear of having to share a room with any of my siblings again, but that's only natural, isn't it?? Either way, it's so amazing to watch their relationship grow and change.
Lastly, there's a scene from another library sale pick, this book, Slightly Single by Wendy Markham, where the heroine describes herself wearing a teddy - only she's about 2 sizes too big for the teddy her boyfriend bought, and so she's wearing a regular bra and her ordinary, non-seductive panties underneath it, and the visual I got had me laughing out loud. Unfortunately, the book wandered into "I'm a fat girl who's unhappy, so I know that in order to be happy I will ultimately have to lose weight" territory rather quickly, and it didn't wind up being a keeper for that reason, but still - a teddy, with a bra and underwear underneath? Totally something that I would do. Because teddies look damn uncomfortable, even for the people they're supposed to fit.
So that's a little glimpse into what I've read in the past few days - some of the things up next for me include a present from my fabulous friend, I am America and so can you! by Stephen Colbert; a stack of magazines from this past month; Boys Adrift; and, hopefully, the latest In Death.
That should last me till tomorrow, anyways. :)
Sunday, October 21, 2007
Friday, October 19, 2007
Monday, October 15, 2007
Big Kisses - My Best Shot Monday
I made the background black & white, but the rest of this picture is unedited. Here's lil Girl sharing her Tigger-iffic love (she loves Elmo more, but that picture came out pretty crappy). Hope everybody's day is going well! I'm off to visit more Best Shot Monday's over at Picture This
Friday, October 12, 2007
Sniffling, sneezing, stuffy head...
I'm a DayQuil commercial, people. I should buy stock in Kleenex. I should be back on Monday, for MBSM. Have a great weekend!
Monday, October 08, 2007
My Best Shot Monday
Welcome to another week!
MBSM-ers: I've changed a lot of my Flickr photos from Public to Private, in response to what seems to be an overwhelming number of posts about pictures being stolen and re-purposed. I'm still not happy about having to do that, for a few reasons:
1) My blog gets very little traffic, and this may be a huge overreaction on my part ... to which I respond to myself, well, 'if you can't be overprotective of the children in your life, who are you going to be overprotective of?' Plus, Flickr is a lot more public than my blog, so that's where I've made the changes.
2)Sharing my photos - here and on Flickr - & sharing in other people's photos, has really been inspiring to me. It helps me feel creative and gives me joy, and I think it's really horrible that something like this would interfere with that.
3)It feels sort of like giving into bullying, even when I know it's more just being proactive. I just hate that I have to take this step because a bunch of people are ridiculous and don't understand boundaries. At which point myself responds with 'but you know there are some sickos out there, which is part of why this blog is anonymous in the first place, so just shut up and do it anyways.'
Well, I obviously listened to the little voice, but am still feeling petulant about it. Petulant is better than regretful or frightened though - which is what I would be if any of my pictures of the kiddos wound up somewhere else (even if that place were 'harmless.'
So, the point of all that is - If you have Flickr, please click through my sidebar shots, and add me, so that we can be friends! Or leave your Flickr URL and I'll add you as my contact... I definitely want to be able to share photos with all of you.
Even though I've taken those steps, I still am going to post pictures of the kiddos here. That feels like a pretty reasonable thing to do, since I am not willing to just stop doing something I love. I'm interested in hearing what reactions you all - all my creative, photography minded friends - have had to this, and what, if any, steps have you taken...
Now let's get to the program here and I'll show you My Best Shot Monday.
I wasn't quite feeling up to a practice run this weekend, so I decided to watch Youngest Nephew and Lil Girl while everybody else went out and partied. We had a sleepover! Which was exhausting! But, also, these kids are amazingly awesome. Youngest Nephew added "Drive Auntie NTE nuts" to his checklist and then put three empty squares next to it, so he would "remember to do it a bunch of times." Lil Girl sang the Blue's Clues song when it came on the radio (I didn't know she watched Blue's Clues!) and has decided that my name is either 'bay' or 'me' - At least 'me' makes sense, since when she points to a picture with me in it, I say, "Yup, that's Auntie NTE, that's me." But 'bay'??? Trust me when I say that is nowhere near my name. And they got along, mostly. And behaved, mostly. And slept till almost 8 in the morning, which, their parents assure me, is a kind of a miracle.
Also, it gave me something to do all night long, such as take a million pictures and try to figure out F-stops. (Which I still have not).
MBSM-ers: I've changed a lot of my Flickr photos from Public to Private, in response to what seems to be an overwhelming number of posts about pictures being stolen and re-purposed. I'm still not happy about having to do that, for a few reasons:
1) My blog gets very little traffic, and this may be a huge overreaction on my part ... to which I respond to myself, well, 'if you can't be overprotective of the children in your life, who are you going to be overprotective of?' Plus, Flickr is a lot more public than my blog, so that's where I've made the changes.
2)Sharing my photos - here and on Flickr - & sharing in other people's photos, has really been inspiring to me. It helps me feel creative and gives me joy, and I think it's really horrible that something like this would interfere with that.
3)It feels sort of like giving into bullying, even when I know it's more just being proactive. I just hate that I have to take this step because a bunch of people are ridiculous and don't understand boundaries. At which point myself responds with 'but you know there are some sickos out there, which is part of why this blog is anonymous in the first place, so just shut up and do it anyways.'
Well, I obviously listened to the little voice, but am still feeling petulant about it. Petulant is better than regretful or frightened though - which is what I would be if any of my pictures of the kiddos wound up somewhere else (even if that place were 'harmless.'
So, the point of all that is - If you have Flickr, please click through my sidebar shots, and add me, so that we can be friends! Or leave your Flickr URL and I'll add you as my contact... I definitely want to be able to share photos with all of you.
Even though I've taken those steps, I still am going to post pictures of the kiddos here. That feels like a pretty reasonable thing to do, since I am not willing to just stop doing something I love. I'm interested in hearing what reactions you all - all my creative, photography minded friends - have had to this, and what, if any, steps have you taken...
Now let's get to the program here and I'll show you My Best Shot Monday.
I wasn't quite feeling up to a practice run this weekend, so I decided to watch Youngest Nephew and Lil Girl while everybody else went out and partied. We had a sleepover! Which was exhausting! But, also, these kids are amazingly awesome. Youngest Nephew added "Drive Auntie NTE nuts" to his checklist and then put three empty squares next to it, so he would "remember to do it a bunch of times." Lil Girl sang the Blue's Clues song when it came on the radio (I didn't know she watched Blue's Clues!) and has decided that my name is either 'bay' or 'me' - At least 'me' makes sense, since when she points to a picture with me in it, I say, "Yup, that's Auntie NTE, that's me." But 'bay'??? Trust me when I say that is nowhere near my name. And they got along, mostly. And behaved, mostly. And slept till almost 8 in the morning, which, their parents assure me, is a kind of a miracle.
Also, it gave me something to do all night long, such as take a million pictures and try to figure out F-stops. (Which I still have not).
Friday, October 05, 2007
All over the place
SisterJ (the bride-to-be) has had, in the past 10 or so years, at least one bout with serious depression. She's been battling it again for the past year or so, in combination with anxiety, and trying different meds to find the right cocktail for her brain. It has been a frustrating, and, at times frightening, process - with physical and mental side effects that have caused major problems. One pill made her throw up all the time; another took away the anxiety but made her hyper. Her current meds are controlling the anxiety to a point (she's now experiencing a sort of social phobia), but the depression is roaring away, unchecked.
I know all of this, but when your sister sits you down and tells you that, if she and her fiance could afford it, she would commit herself because she's afraid she'll hurt herself - well, there's really just no way to be prepared for that.
Her doctor has advised her to take 2 weeks medical leave from work, while she tries again to adjust her meds (adding another pill, subtracting one, fudging with another's dosage), so that she can do so in a less stressful environment. That would be nice, if we were in a perfect world, but even the idea of it just added to SisterJ's stress and fear - how would they be able to afford that? Would her boss fire her just for asking, considering she certainly hasn't been doing her best work in the past month or two? If she got fired, not only couldn't she afford her doctor and her meds, but they couldn't afford to live in their condo. You can see how this may not exactly be the most comforting of thoughts.
But she did have some vacation days that she could use, and she has Monday off anyways, so she went into a meeting with her immediate supervisor today, prepared to use her three vacation days and an unpaid day, giving her all of next week off. The meeting went just as badly as she feared it would - yes, they had all noticed that her work has been sub par, and she's now on probation, having to report in at all times during the day. Supervisor was not happy about her taking next week off because of health issues. She is one step away from being fired, and there's little hope that she'll come off that step positively, no matter how much they like her or the job she'd been doing before things took a turn for the worse.
She arrived at our house in tears, and wouldn't tell us what was wrong right away. We played with the baby, distracted her for a bit, and then, when her fiance got off work, she started to tell us. About how much worse the depression is right now. About how she's had serious suicidal thoughts. About how worried she is all the time and how it seems overwhelming and never ending and unbearable. About her doctor's advice, her plans for next week, her horrible meeting with her supervisor.
And we talked and cried and laughed and tried to make plans - what she needs us to do (just listen; let her cry if she needs to; remind her that there's hope still), what her fiance needs us to do (be available whenever he needs to talk; listen to what he needs to say), what they need to do for us (keep in contact; stop hiding things; ask for help), and then they went home for the night.
About 10 minutes ago, she called me in tears and my heart plummeted. But these were happy tears - she failed to mention that after the horrible meeting with her supervisor, she'd gone to see the big boss, (it's a small company - there's the two partners/big bosses, her supervisor, then SisterJ and people below her) to let her know exactly what was going on. She explained what she hadn't been able to say to her supervisor - about the depression and her doctor's advice, about the paralysing fear and inability to feel like anything actually matters - and her boss set up a meeting for the Monday she returns with all four (two big bosses, supervisor, & SisterJ) of the main players, so they can move on from there. She was sympathetic and appreciated that SisterJ came in to tell her about it.
Apparently, after SisterJ got home and checked her work e-mail, she had a message from the big bosses that said that they think she should follow her doctor's orders and take the two weeks that she recommends. They'll cover the extra week, paid, because they have faith in her & because they value her as an employee, and want her to be able to stay and be a part of their company.
If I had their number, I would call them right now, regardless of how unprofessional it would be. I would send flowers, or trek over there to hug them myself: SisterJ called me crying because she couldn't believe that people could be so nice. That something good like this could actually happen to her.
(Hello, I'm depression - I will now convince you that you are worthless: always have been, always will be. I will terrorize you until you think that the world consists only of pain and heartbreak, and that your only shot at avoiding this horrendous torture for eternity is to remove yourself from the playing field completely. And immediately. And you will believe me in all things, because that's the way I work.)
And they, just by virtue of being nice people, by doing something that feels right to them, have put a little piece of hope and happiness in my sister's heart.
At this point, they could declaw cats for kicks, and they'd still be some of my favoritest people on the planet.
It may still be a far cry from a perfect world, but these two people are doing there best to help us get there.
Two other notes -
First, I've noticed a lack of positive posts here lately, and am attempting to make myself focus on some of the better things that are going on, so you all get to share in those too. They are here, I promise.
Second, my family has a rather large history of depression (and at least one suicide attempt), I myself have suffered as a result of chronic illness, and still, I find that I'm not sure if what I'm saying is the 'right' thing. I know a lot of the 'wrong' things to stay clear of ("Just smile!" or "Think positively" being two of the tops there), but I'd still appreciate your wisdom here. If you've suffered from depression, what were some of the things people around you did/said that helped or hurt? If you've loved someone with depression, what are some of the things you think I should know? Of course, I am doing my research (yay Internet!), but I know you all are pretty much interpersonal geniuses (see "Why is it so hard?"), and always have something useful to say. Thanks in advance!
I know all of this, but when your sister sits you down and tells you that, if she and her fiance could afford it, she would commit herself because she's afraid she'll hurt herself - well, there's really just no way to be prepared for that.
Her doctor has advised her to take 2 weeks medical leave from work, while she tries again to adjust her meds (adding another pill, subtracting one, fudging with another's dosage), so that she can do so in a less stressful environment. That would be nice, if we were in a perfect world, but even the idea of it just added to SisterJ's stress and fear - how would they be able to afford that? Would her boss fire her just for asking, considering she certainly hasn't been doing her best work in the past month or two? If she got fired, not only couldn't she afford her doctor and her meds, but they couldn't afford to live in their condo. You can see how this may not exactly be the most comforting of thoughts.
But she did have some vacation days that she could use, and she has Monday off anyways, so she went into a meeting with her immediate supervisor today, prepared to use her three vacation days and an unpaid day, giving her all of next week off. The meeting went just as badly as she feared it would - yes, they had all noticed that her work has been sub par, and she's now on probation, having to report in at all times during the day. Supervisor was not happy about her taking next week off because of health issues. She is one step away from being fired, and there's little hope that she'll come off that step positively, no matter how much they like her or the job she'd been doing before things took a turn for the worse.
She arrived at our house in tears, and wouldn't tell us what was wrong right away. We played with the baby, distracted her for a bit, and then, when her fiance got off work, she started to tell us. About how much worse the depression is right now. About how she's had serious suicidal thoughts. About how worried she is all the time and how it seems overwhelming and never ending and unbearable. About her doctor's advice, her plans for next week, her horrible meeting with her supervisor.
And we talked and cried and laughed and tried to make plans - what she needs us to do (just listen; let her cry if she needs to; remind her that there's hope still), what her fiance needs us to do (be available whenever he needs to talk; listen to what he needs to say), what they need to do for us (keep in contact; stop hiding things; ask for help), and then they went home for the night.
About 10 minutes ago, she called me in tears and my heart plummeted. But these were happy tears - she failed to mention that after the horrible meeting with her supervisor, she'd gone to see the big boss, (it's a small company - there's the two partners/big bosses, her supervisor, then SisterJ and people below her) to let her know exactly what was going on. She explained what she hadn't been able to say to her supervisor - about the depression and her doctor's advice, about the paralysing fear and inability to feel like anything actually matters - and her boss set up a meeting for the Monday she returns with all four (two big bosses, supervisor, & SisterJ) of the main players, so they can move on from there. She was sympathetic and appreciated that SisterJ came in to tell her about it.
Apparently, after SisterJ got home and checked her work e-mail, she had a message from the big bosses that said that they think she should follow her doctor's orders and take the two weeks that she recommends. They'll cover the extra week, paid, because they have faith in her & because they value her as an employee, and want her to be able to stay and be a part of their company.
If I had their number, I would call them right now, regardless of how unprofessional it would be. I would send flowers, or trek over there to hug them myself: SisterJ called me crying because she couldn't believe that people could be so nice. That something good like this could actually happen to her.
(Hello, I'm depression - I will now convince you that you are worthless: always have been, always will be. I will terrorize you until you think that the world consists only of pain and heartbreak, and that your only shot at avoiding this horrendous torture for eternity is to remove yourself from the playing field completely. And immediately. And you will believe me in all things, because that's the way I work.)
And they, just by virtue of being nice people, by doing something that feels right to them, have put a little piece of hope and happiness in my sister's heart.
At this point, they could declaw cats for kicks, and they'd still be some of my favoritest people on the planet.
It may still be a far cry from a perfect world, but these two people are doing there best to help us get there.
Two other notes -
First, I've noticed a lack of positive posts here lately, and am attempting to make myself focus on some of the better things that are going on, so you all get to share in those too. They are here, I promise.
Second, my family has a rather large history of depression (and at least one suicide attempt), I myself have suffered as a result of chronic illness, and still, I find that I'm not sure if what I'm saying is the 'right' thing. I know a lot of the 'wrong' things to stay clear of ("Just smile!" or "Think positively" being two of the tops there), but I'd still appreciate your wisdom here. If you've suffered from depression, what were some of the things people around you did/said that helped or hurt? If you've loved someone with depression, what are some of the things you think I should know? Of course, I am doing my research (yay Internet!), but I know you all are pretty much interpersonal geniuses (see "Why is it so hard?"), and always have something useful to say. Thanks in advance!
Tuesday, October 02, 2007
Things that are worrying me about the wedding (episode 1)
(of probably 1113 episodes)
We're 227 days and counting away from my sister's wedding, the save the dates are in the mail right now, and the number of things I have to worry about in regards to it seems to be ever expanding. But for today, I'd like to focus on this -
I can't remember the last time I was outside of my house (and expected to be social) past, like, 7:30 at night. Usually by around that time, the pain and fatigue and achiness and dizziness have all worn me out, and I'm not up to my normal, fake-believe-everything-is-ok levels. And this wedding starts at 5:30. After what I'm sure will be a very full day.
So, I'm a bit concerned. Because, even though I am good at delegating, I will still need to be doing some things, such as keeping Sister J sane and the rest of the bridesmaids focused, and that's before all the intense stuff.
And, the thing is that my disease(s) are pretty are changeable, so even though I was in my roommate's wedding back in 2001, my cousin's in 2002, and two separate cousins for each of the following two years, I'm not the same kind of sick now as I was for any of them, so past experience isn't really helping me out too much here. I mean, I know I'll have to do what I can laying down in the days and weeks before, and on the day of especially (or else disasters will occur, and if there's anything worse than being 'the bride's sick sister,' it's being 'the bride's sick sister who passed out in the middle of their vows' or, even better, 'the bride's sick sister we had to call the ambulance for'... Shudder.); I know I'll have to be taking all my meds and have emergency meds for pain and breathing and all sorts of stuff on my person at all times (or, rather, on my chair at all times); I know better than to take even a sip of champagne, what with all the meds; I know enough to cross everything not absolutely necessary off the to-do list in the weeks leading up to and the month or so following the date; I also know that there'll be stress and stress is not good for me, so I've got to remember to take it slow and keep eating healthy, or things will be worse.
And, I know, that I'll fake what I can because that's what I have to do to get through it. And that I'll have fun at the same time, because that's the kind of multitasking people with chronic illnesses are awesome at!
But, since I don't actually know how I'll do at night, I think I'm going to do a trial run at the surprise party for one of my (other) cousins this Saturday. It's much more low-key than a wedding, but it's late, it's loud, it's all of the things that I'm going to have to deal with come May, so I'm going to make the effort and give it a shot. Of course, it's Tuesday, so my plans could totally change by Saturday (stupid sinus infection needs to listen to its antibiotic friends and DIE!), but for now, I've just made my first after dark outing plans at least 2 years. Yay!
We're 227 days and counting away from my sister's wedding, the save the dates are in the mail right now, and the number of things I have to worry about in regards to it seems to be ever expanding. But for today, I'd like to focus on this -
I can't remember the last time I was outside of my house (and expected to be social) past, like, 7:30 at night. Usually by around that time, the pain and fatigue and achiness and dizziness have all worn me out, and I'm not up to my normal, fake-believe-everything-is-ok levels. And this wedding starts at 5:30. After what I'm sure will be a very full day.
So, I'm a bit concerned. Because, even though I am good at delegating, I will still need to be doing some things, such as keeping Sister J sane and the rest of the bridesmaids focused, and that's before all the intense stuff.
And, the thing is that my disease(s) are pretty are changeable, so even though I was in my roommate's wedding back in 2001, my cousin's in 2002, and two separate cousins for each of the following two years, I'm not the same kind of sick now as I was for any of them, so past experience isn't really helping me out too much here. I mean, I know I'll have to do what I can laying down in the days and weeks before, and on the day of especially (or else disasters will occur, and if there's anything worse than being 'the bride's sick sister,' it's being 'the bride's sick sister who passed out in the middle of their vows' or, even better, 'the bride's sick sister we had to call the ambulance for'... Shudder.); I know I'll have to be taking all my meds and have emergency meds for pain and breathing and all sorts of stuff on my person at all times (or, rather, on my chair at all times); I know better than to take even a sip of champagne, what with all the meds; I know enough to cross everything not absolutely necessary off the to-do list in the weeks leading up to and the month or so following the date; I also know that there'll be stress and stress is not good for me, so I've got to remember to take it slow and keep eating healthy, or things will be worse.
And, I know, that I'll fake what I can because that's what I have to do to get through it. And that I'll have fun at the same time, because that's the kind of multitasking people with chronic illnesses are awesome at!
But, since I don't actually know how I'll do at night, I think I'm going to do a trial run at the surprise party for one of my (other) cousins this Saturday. It's much more low-key than a wedding, but it's late, it's loud, it's all of the things that I'm going to have to deal with come May, so I'm going to make the effort and give it a shot. Of course, it's Tuesday, so my plans could totally change by Saturday (stupid sinus infection needs to listen to its antibiotic friends and DIE!), but for now, I've just made my first after dark outing plans at least 2 years. Yay!
Saturday, September 29, 2007
Hey look: They are actually called tonsils! I thought he was just comparing them to my tonsils (which are always enlarged, and an apt comparison). But when I talked to him again yesterday, he said it again, so I decided to look it up.
Who knew?
He thinks that there's a possibility of Chiari Malformation, which has a high CFIDS/ME & FM comorbidity rate:
The best known of these conditions is the Chiari malformation, in which the cerebellar "tonsils" (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.
Yeah, I don't especially like the sound of any of those things, or the treatments (which say things like, gee, I don't know - brain or skull surgery), but ain't gonna worry about any of that until I have to. Got an EEG this week, the neurologist the week after. I will definitely keep you posted!
Who knew?
He thinks that there's a possibility of Chiari Malformation, which has a high CFIDS/ME & FM comorbidity rate:
The best known of these conditions is the Chiari malformation, in which the cerebellar "tonsils" (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.
Yeah, I don't especially like the sound of any of those things, or the treatments (which say things like, gee, I don't know - brain or skull surgery), but ain't gonna worry about any of that until I have to. Got an EEG this week, the neurologist the week after. I will definitely keep you posted!
Thursday, September 27, 2007
Thanks for the comments, guys - Yes, I'm following up both with further testing (an EEG and another MRI) and with a neurologist. No, my doc didn't have the specifics of what some of those results could mean for me particularly. More wait and see. By now, I"m good at it.
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In other news, it's THURSDAY and that means The Office. Which is new tonight. Must now go watch genius! You should watch it, people. Always.
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In other news, it's THURSDAY and that means The Office. Which is new tonight. Must now go watch genius! You should watch it, people. Always.
Wednesday, September 26, 2007
You know what I don't get...
when you go in for a specific test (for a specific reason), why is it never like it is on House, where they don't see what they're looking for, but they keep their eyes open for other things?
A few weeks ago I was undergoing some testing, and one of the things I had was an MRI. Now the MRI was originally meant to test pituitary function or somesuch thing like that, and it came back 'slightly abnormal/asymetrical, but no significant findings.' Whatever the hell that means. So, on Monday's appointment I went in with that understanding, and imagine my surprise when he starts talking about the fact that the veins in my left temporal lobe are 'highly enhanced' and that my cerebellum tonsils are enlarged. First of all, WTF? Because while I may have passed my intro to A & P in college, where we had to memorize the parts of the brain and all that, it was a while back, and I had to come home and make sure those things were located where I thought they were.
Secondly, there wasn't anybody who could've read this in the test the first time around? What about the MRI I had 4 years ago to test for MS? Could it have been on there, but, because they were looking for the lesions so common in MS, they didn't notice it? Could it have been there in the first MRI I had, back when I first got sick, 13 frickin years ago???
And thirdly, what the hell does it actually mean??? He explained that it might be causing seizures/mini-seizures, and it could definitely have something to do with my hypersensitivities (to light, smell, sound and PAIN), but he didn't really know why it would be like that, or if it were something new or something we'd missed before. It doesn't explain the fevers, he said, or the infections, or a ton of other stuff, but it certainly could be interferring with my daily life. My daily life? Ha! Yeah, I could see how mini-seizures could affect some of the things I've been dealing with - not sleeping, pain, falling down like I'm drunk.
It's so frustrating!!
But here's the thing that's most frustrating of all - I've got to go in for some more tests, and I'm afraid that this won't be it. That this will be just another wild goose chase the doctors have sent me on, and a swollen brain with enlarged veins (which sounds really impressive), will just wind up being one more thing that's wrong with me that they can't do anything for.
A few weeks ago I was undergoing some testing, and one of the things I had was an MRI. Now the MRI was originally meant to test pituitary function or somesuch thing like that, and it came back 'slightly abnormal/asymetrical, but no significant findings.' Whatever the hell that means. So, on Monday's appointment I went in with that understanding, and imagine my surprise when he starts talking about the fact that the veins in my left temporal lobe are 'highly enhanced' and that my cerebellum tonsils are enlarged. First of all, WTF? Because while I may have passed my intro to A & P in college, where we had to memorize the parts of the brain and all that, it was a while back, and I had to come home and make sure those things were located where I thought they were.
Secondly, there wasn't anybody who could've read this in the test the first time around? What about the MRI I had 4 years ago to test for MS? Could it have been on there, but, because they were looking for the lesions so common in MS, they didn't notice it? Could it have been there in the first MRI I had, back when I first got sick, 13 frickin years ago???
And thirdly, what the hell does it actually mean??? He explained that it might be causing seizures/mini-seizures, and it could definitely have something to do with my hypersensitivities (to light, smell, sound and PAIN), but he didn't really know why it would be like that, or if it were something new or something we'd missed before. It doesn't explain the fevers, he said, or the infections, or a ton of other stuff, but it certainly could be interferring with my daily life. My daily life? Ha! Yeah, I could see how mini-seizures could affect some of the things I've been dealing with - not sleeping, pain, falling down like I'm drunk.
It's so frustrating!!
But here's the thing that's most frustrating of all - I've got to go in for some more tests, and I'm afraid that this won't be it. That this will be just another wild goose chase the doctors have sent me on, and a swollen brain with enlarged veins (which sounds really impressive), will just wind up being one more thing that's wrong with me that they can't do anything for.
Tuesday, September 25, 2007
Because, even though I love Miss Zoot's design,
even us non-fashonistas feel like changing things up every now and again. (Plus, while I realize I probably can learn how to do it myself, I'd really rather not have to.)
Monday, September 24, 2007
Lil Girl (Youngest/Only Niece) --- Eatin her first cherry tomato, fresh from the garden
Or, rather, popping it into her mouth, sucking on it until it was soft, and then spitting it out when all the juices got in her mouth.
That's my favorite shot today, and my Best Shot Monday post... head on over to Tracey at Picture This, to check out some more wonderful pictures!
Friday, September 21, 2007
BOB Books Review
So, I'd committed myself to a review for the BOB Books Blog Tour, and my scheduled date for the post was Monday. I'm so sorry to be so late! Germs + me X (siblings with drama) = blech. So, without any further ado, here's what I thought...
First of all:
>Mother Talk sent me these books to review, even though we all know I'm not a mother. I signed up as an extraordinarily involved auntie and, because of my experience working with young children and helping them learn to read, I was pretty excited to be a part of this review for BOB Books: I'd heard some great things about them from some of the homeschooling bloggers I frequent, and, even though I'm not currently working, I like to keep building my teacher's toolkit for when I'm eventually able to go back to work.
Learning to read involves a number of specific skills that have to be mastered - concepts of print, phonemic awareness, grammar, fluency, comprehension, etc - and these books focus specifically on decoding. Decoding is recognizing and distinguishing between each letter of the alphabet and their specific sounds. As you can imagine, it's pretty vital to reading.
The BOB books I was sent are series 1, for beginning readers, and focus almost exclusively on introducing the sounds of specific letters and how you blend them together to make words. Each book introduces beginning and ending consonant & short vowel sounds on the inside front cover, and then uses those letters and sounds (M - A - T) to put together a short word (Mat) in brief (2 - 3 word) sentences. There's about 6-10 pages per book, and the 'stories' they tell are quick and simple: these books are not long on plot, but that's also not what they're for, particularly. They're very reminiscent of basal readers (aka Dick & Jane books) or easy readers that we use in classrooms already to help kids decipher the sounds that each letter represents, within the context of a book.
I liked that they came in a set, and that each book builds on the skills and vocabulary from the last book. Lil Girl is only 16 months, but she liked the pictures and silliness of the stories (Mat sat on Sam), and Youngest Nephew, who's in 2nd Grade now, is a bit older than the age group these are most helpful for (Pre-K/K, any beginning stage reader), but he loved that he could read the whole set by himself.
The teacher part of me wants to stress the fact that you shouldn't use phonics alone to help kids learn to read: you need so many other things too - Parents who read/an environment where reading is respected. Rich and engaging children's literature, to help contradict the idea that 'reading is boring.' Time and patience and practice. But BOB Books are certainly worth adding to the mix, especially for kids who head into information overload when there's too much going on in a book - the lack of distractions here, the simple text and illustrations, will give them a better chance at grasping the necessary skills for reading, and the confidence that they can master those skills.
First of all:
>Mother Talk sent me these books to review, even though we all know I'm not a mother. I signed up as an extraordinarily involved auntie and, because of my experience working with young children and helping them learn to read, I was pretty excited to be a part of this review for BOB Books: I'd heard some great things about them from some of the homeschooling bloggers I frequent, and, even though I'm not currently working, I like to keep building my teacher's toolkit for when I'm eventually able to go back to work. Learning to read involves a number of specific skills that have to be mastered - concepts of print, phonemic awareness, grammar, fluency, comprehension, etc - and these books focus specifically on decoding. Decoding is recognizing and distinguishing between each letter of the alphabet and their specific sounds. As you can imagine, it's pretty vital to reading.
The BOB books I was sent are series 1, for beginning readers, and focus almost exclusively on introducing the sounds of specific letters and how you blend them together to make words. Each book introduces beginning and ending consonant & short vowel sounds on the inside front cover, and then uses those letters and sounds (M - A - T) to put together a short word (Mat) in brief (2 - 3 word) sentences. There's about 6-10 pages per book, and the 'stories' they tell are quick and simple: these books are not long on plot, but that's also not what they're for, particularly. They're very reminiscent of basal readers (aka Dick & Jane books) or easy readers that we use in classrooms already to help kids decipher the sounds that each letter represents, within the context of a book.
I liked that they came in a set, and that each book builds on the skills and vocabulary from the last book. Lil Girl is only 16 months, but she liked the pictures and silliness of the stories (Mat sat on Sam), and Youngest Nephew, who's in 2nd Grade now, is a bit older than the age group these are most helpful for (Pre-K/K, any beginning stage reader), but he loved that he could read the whole set by himself.
The teacher part of me wants to stress the fact that you shouldn't use phonics alone to help kids learn to read: you need so many other things too - Parents who read/an environment where reading is respected. Rich and engaging children's literature, to help contradict the idea that 'reading is boring.' Time and patience and practice. But BOB Books are certainly worth adding to the mix, especially for kids who head into information overload when there's too much going on in a book - the lack of distractions here, the simple text and illustrations, will give them a better chance at grasping the necessary skills for reading, and the confidence that they can master those skills.
Tuesday, September 18, 2007
Oh, I don't know if
I am brave enough for this, even if I'm sure I have something that could win. Honestly: I look like a zombie. It's horrid.
Sunday, September 16, 2007
A little link-y love
Here's a post that I think you all should read:
Disability is a feminist issue
I've tried to say things like this, but I feel like Cara did such an amazing job of clarifying all the important points, so head on over and check it out.
------------------
Since we've been talking about Invisible Illnesses and all that this week, I wanted to highlight a site that has been an invaluable resource for me: Chronic Babe.
Geared toward young women with chronic illnesses (but certainly not solely for them), Chronic Babe has helped me in so many ways. I think, most importantly, it's made me to incorporate the Chronic aspects into my life. Helped me realize that having a chronic illness doesn't cancel out all the other aspects of being me. And that I can't just ignore or seperate the two if I'm ever going to be able to just live. The idea of being a Chronic Babe is not something I'd have even considered possible just a few years ago, and my relationships on the internet - not just with CB, but with the Spoonies over at the but you don't look sick boards and all of the BADD bloggers and other individuals with disabilities - have made this term, once so oxymoronic to me something I can - and do - embrace wholeheartedly. Helping me to not be ashamed of a part of me that I'm not entirely happy about, to claim it just because it's mine (even if I don't want it to be) is something I'll always be grateful for.
On a personal level, the Editrix of Chronic Babe, Jenni Prokopy, is one of those people who just manages to make you feel welcome, all the time. When she and her husband were recently hit during a microburst & their home was destroyed, I only wished I could've helped more.
Chronic Babe just celebrated it's 2nd birthday, and I consider myself lucky that I happened upon them almost that long ago. The articles and resources are amazing - The links there were my first introduction to Grand Rounds, as well as some important sites on coping.
Best of all, Chronic Babe handles serious and silly things - shows that anything that's part of a 'normal' life is part of our lives too.
Head on over at check it out - Happy Birthday Babes!
Disability is a feminist issue
I've tried to say things like this, but I feel like Cara did such an amazing job of clarifying all the important points, so head on over and check it out.
------------------
Since we've been talking about Invisible Illnesses and all that this week, I wanted to highlight a site that has been an invaluable resource for me: Chronic Babe.
Geared toward young women with chronic illnesses (but certainly not solely for them), Chronic Babe has helped me in so many ways. I think, most importantly, it's made me to incorporate the Chronic aspects into my life. Helped me realize that having a chronic illness doesn't cancel out all the other aspects of being me. And that I can't just ignore or seperate the two if I'm ever going to be able to just live. The idea of being a Chronic Babe is not something I'd have even considered possible just a few years ago, and my relationships on the internet - not just with CB, but with the Spoonies over at the but you don't look sick boards and all of the BADD bloggers and other individuals with disabilities - have made this term, once so oxymoronic to me something I can - and do - embrace wholeheartedly. Helping me to not be ashamed of a part of me that I'm not entirely happy about, to claim it just because it's mine (even if I don't want it to be) is something I'll always be grateful for.
On a personal level, the Editrix of Chronic Babe, Jenni Prokopy, is one of those people who just manages to make you feel welcome, all the time. When she and her husband were recently hit during a microburst & their home was destroyed, I only wished I could've helped more.
Chronic Babe just celebrated it's 2nd birthday, and I consider myself lucky that I happened upon them almost that long ago. The articles and resources are amazing - The links there were my first introduction to Grand Rounds, as well as some important sites on coping.
Best of all, Chronic Babe handles serious and silly things - shows that anything that's part of a 'normal' life is part of our lives too.
Head on over at check it out - Happy Birthday Babes!
Friday, September 14, 2007
Invisible when...
So I've been living with my own special set of chronic illnesses for about 13 years now (ugh, next month is my sick-a-versary, again :( ), and they're unfortunately not as invisible as they used to be, because I'm not mobile without my wheelchair anymore, because I do show signs of my illnesses outwardly. However, there are still SO MANY TIMES that my illnesses make me feel invisible.
The theme of the week is that having a chronic invisible illness is a roller coaster : I sort of agree, in that any life has it's ups and downs. But the part about living with a chronic illness that feels most invisible to me is the in between times. Not the highs and lows, but the everyday, ordinary struggles that - just like with everybody else, disabled or not - I feel so many people don't see.
I feel most invisible on these ordinary days. On the "Oh, but you don't look sick" days.
In the times when all my friends are having housewarming parties and baptisms, and they (mostly) remember to invite me, but we all know I can't go.
When those same friends or family say things like "But it's only hair spray, and I put it on hours ago," or "But there's only three steps, and if you want, I can have my brother carry you up them," or "But the cat will stay in my room when you come over." Because they're not seeing me, not then.
Or when my sisters are planning nights out, and there's no question of me going. No contemplation of "would NTE like to go?" Because the answer, no matter how much I might like to, is going to be no - nighttime excursions are not on my menu, 28 years old or not.
It's when the funding for my disease gets funneled into some other disease's pockets, and there's no public outcry.
It's when I'm sitting in a restaurant, and the waiter asks my mother what I'd like for lunch.
It's when people don't see the effort it takes for me to show up to their party, talk to them coherently on the phone for an hour, or recognize the weeks I'll spend recuperating from a 'quick trip' to the store.
It's when taking care of the babies (whoever the babies are at the time, and however old they might be) wears me out so much that I have trouble breathing, thinking, eating, and yet that baby's parents always ask for "one more day" or stop by unexpectedly, not really seeing that taking care of their baby is what eats up most of my energy in the first place.
It's when the things that are a big deal to me - smells, visitors, germs - are ignored even by those closest to me.
It's when asking for what I need gets interpreted as being petty or overly selfish.
It's during the endless days of waiting and the parades of tests. When the people who love me get so sick of the non-answers - the only thing I've got to give them - that they just stop asking me how I am. As if I'm not just as frustrated, as if the not knowing isn't eating away at me too.
It's after a crisis has past - after I'm out of the hospital, or not throwing up on somebody's feet - and people seem to forget that I even exist. That I'm still here waiting.
It's when the get well cards stop coming, when there's no balloons or flowers. Or when there weren't any in the first place.
It's when somebody asks me what I do (for a living), and the only answer I can seem to come up with is "Survive."
It's when friends just disappear. Just fall away.
It's when I'm slogging through, trying to live, fighting for every moment, and nobody seems to notice.
These are the times I feel most invisible.
When don't I feel invisible?
Playing with those same babies, helping them learn & grow, or making them laugh.
Sitting in Zach's office, knowing that he's listening to every word, knowing that's he's trying.
When I know that anybody is listening - that they're interested and paying attention, and not just because it impacts them.
Writing here, knowing that people are listening - isn't that why you all write too?
The theme of the week is that having a chronic invisible illness is a roller coaster : I sort of agree, in that any life has it's ups and downs. But the part about living with a chronic illness that feels most invisible to me is the in between times. Not the highs and lows, but the everyday, ordinary struggles that - just like with everybody else, disabled or not - I feel so many people don't see.
I feel most invisible on these ordinary days. On the "Oh, but you don't look sick" days.
In the times when all my friends are having housewarming parties and baptisms, and they (mostly) remember to invite me, but we all know I can't go.
When those same friends or family say things like "But it's only hair spray, and I put it on hours ago," or "But there's only three steps, and if you want, I can have my brother carry you up them," or "But the cat will stay in my room when you come over." Because they're not seeing me, not then.
Or when my sisters are planning nights out, and there's no question of me going. No contemplation of "would NTE like to go?" Because the answer, no matter how much I might like to, is going to be no - nighttime excursions are not on my menu, 28 years old or not.
It's when the funding for my disease gets funneled into some other disease's pockets, and there's no public outcry.
It's when I'm sitting in a restaurant, and the waiter asks my mother what I'd like for lunch.
It's when people don't see the effort it takes for me to show up to their party, talk to them coherently on the phone for an hour, or recognize the weeks I'll spend recuperating from a 'quick trip' to the store.
It's when taking care of the babies (whoever the babies are at the time, and however old they might be) wears me out so much that I have trouble breathing, thinking, eating, and yet that baby's parents always ask for "one more day" or stop by unexpectedly, not really seeing that taking care of their baby is what eats up most of my energy in the first place.
It's when the things that are a big deal to me - smells, visitors, germs - are ignored even by those closest to me.
It's when asking for what I need gets interpreted as being petty or overly selfish.
It's during the endless days of waiting and the parades of tests. When the people who love me get so sick of the non-answers - the only thing I've got to give them - that they just stop asking me how I am. As if I'm not just as frustrated, as if the not knowing isn't eating away at me too.
It's after a crisis has past - after I'm out of the hospital, or not throwing up on somebody's feet - and people seem to forget that I even exist. That I'm still here waiting.
It's when the get well cards stop coming, when there's no balloons or flowers. Or when there weren't any in the first place.
It's when somebody asks me what I do (for a living), and the only answer I can seem to come up with is "Survive."
It's when friends just disappear. Just fall away.
It's when I'm slogging through, trying to live, fighting for every moment, and nobody seems to notice.
These are the times I feel most invisible.
When don't I feel invisible?
Playing with those same babies, helping them learn & grow, or making them laugh.
Sitting in Zach's office, knowing that he's listening to every word, knowing that's he's trying.
When I know that anybody is listening - that they're interested and paying attention, and not just because it impacts them.
Writing here, knowing that people are listening - isn't that why you all write too?
So you know what I should do more of?
Tell people to come back for exciting posts and then never post anything at all.
Doesn't that sound like a fabulous idea?
(This would be a good place for some smilies, but I have no idea how to incorporate those into my site, so you're just going to have to picture me giving myself a big dope slap.)
However, if you wanted to know a little bit about having a chronic illness, it is worthwhile to note that they are totally un-fricken-predictable. But, in lieu of excuses, which just generally suck anyways, I'm going to get right to the point:
Hi, my name (here) is NTE: I have chronic illnesses: They suck.
Because it seems like only half of you can even see my task bar (I don't know why... any ideas on that would be most welcome), and that means you can't click on the nice little health round-up I've got there for you, I'm just going to fill in the basics.
Again. (So all of you regular readers might want to zoom right past this - I won't be offended: I'd rather skip over it myself.)
Here is my current list of diagnoses:
Postural Orthostatic Tachycardia Syndrome POTS - Which is basically a failure in the regulation of my blood pressure, heart rate and blood flow when in an upright position. Currently semi-under control - which means that I no longer pass out any time I dare to go from a flat position to an inclined position, but I still can't stand unassisted (unless I'd like to add to the collection of bumps & bruises I've currently got) or sit for longer periods of time without feeling quite ill.
Fibromyalgia or FM/FMS - This is where the pain comes in people. And holy lord does it bring the pain. Fibromyalgia is either - depending upon who you ask - a completely useless, catch-all term for pain that doctors don't understand the nature or progression of OR a medically recognized rheumatic disorder of indiscriminate origin with very few treatment options and no known cure. Either way, you're pretty much screwed.
There's much discussion over whether or not the diagnosis of FM for chronic, unexplained pain has - like the over diagnosis of ADD & ADHD in children in the past 15 years - just become a way to group people whose pain doctors just don't understand yet, and what that's doing for those of us who are suffering, but I'm not going to get into that right now.
For right now, let me just say that FM is about pain - in specific & laughingly labelled 'tender' points on your body, as well as a general, all over 'achiness' - This is often described in terms of the feeling you get when you have the flu, but I think it would be more accurately described as the feeling you get when you have the flu, but have also just run a marathon, during which you gave birth and were hit by a bus. That's the gist of the everyday, all over 'achiness' I feel. It's a constant weight & heaviness, like a coat made of pain, that you wear all the time, everyday. As you can imagine, wearing this coat also wears you out. There are a ton of other symptoms related to FM (and CFIDS), but for me, it's all about the pain.
My FM is, right now, the thing that I am most concerned about - often I feel like if I could just slip out of this coat, just for a little while, then a lot of my other issues would be much more manageable.
CFIDS/CFS, Chronic Fatigue Immune Deficiency Syndrome and/or (- although I know that there is now a big discrepancy between what I have been told and what the medical & patient communities now believe to be true, I'm going to go with the labels I have been given over the past 13 years and try to steer clear (for now) of the Name Controversy) - Myalgic Encephalomyelitis, ME - This was my first diagnosis, and, like FM, it is both controversial and a sort of catch all, only this time for unexplainable fatigue. The major symptom I've experienced with my ME/CFIDS is overwhelming, unwavering fatigue _ which, at some point, I've just gotten used to. It hasn't gone away, I've just become accustomed to it as my partner in life. We make allowances for each other. Say I want to go to my grandmother's birthday party; the fatigue says, "Ok, rest up for two weeks. And then for three weeks afterwards, we'll stay in bed. ALL THE TIME." It's not quite as accomodating as I might like, but what are you gonna do?
I've also suffered from stomach issues that are most likely related to the ME/CFIDS, as well as cognitive difficulties, sensitivities to smells, noises, tastes, and sounds, and the severe sleep cycle disturbances that are so commonly associated with this disease: Example - when I first got sick I slept for 18-20 hours a day. For months at a time. And now? I'm lucky to get 18- 20 minutes in a row. Ah, the joys of cyclic illnesses.
Hypogammaglobulinemia - an immune disorder that basically means my immune system is unable to ferret out and attack invader cells. It's an antibody deficiency, and it makes itself known with recurrent and serious infections. A mostly healthy person who is 28 will, generally, not have had pneumonia more than once. Will, most likely not get 12 sinus infections in one year. Will be able to fight off colds and not develop odd rashes from random bacteria. That is not me. I am the one who, when you sneeze three aisles down in the store, thinks "Damn... I better not catch that." This is a treatable condition, thankfully, but the treatments only semi-work for me, so far. My body doesn't feel like producing the antibodies, and so chooses not to. I'm stubborn, even on a cellular level, I guess.
And the interrelatedness of all of my illnesses cannot be overlooked - CFIDS/ME is often connected to orthostatic intolerance issues, like POTS. FM and CFIDS/ME are rarely spoken of without each other, their symptoms overlap and twist and tangle into unbreakable knots. Hypogammaglobunemia and ME/CFIDS share many characteristics. The fact that the doctors often don't know what is making one symptom occur - and that I can't just say, "oh, well, that's definitely the CFIDS/ME that's causing that" - makes treatment options much more difficult.
And, most importantly of all, to me - none of them have a known cause or cure.
I also have two more 'normal' - and definitely more common - invisible illnesses - Asthma and Migraines. Neither of those is visible, and yet they're much more accepted (both in the public and within the medical community), and much better understood than the other diseases I have. Having these illnesses makes it all the more difficult for me to understand the whole "but you don't look sick" mentality.
A person who has asthma doesn't look sick, generally: but they are. Migraines aren't visible to anyone else, but I haven't run into any doctors who doubt that they're a very real and debilitating disease. Pain, because it's so personal, because it's so subjective and hard to describe, seems less valid a symptom to many medical professionals and people I meet in the course of my everyday life. The same with fatigue. And with both of these issues, people's own experiences color their impressions of these diseases. Everyone in the world has felt pain before, everybody thinks "Oh, my back has been killing me for weeks," or "I've been that exhausted before, you just have to sleep it off." But that's not the way CFIDS/ME works, and FM isn't a pulled muscle.
There's a handy-dandy round-up of my major illnesses and diagnoses. (We'll leave the minor ones for now, thank you very much.) Hopefully this will help as I talk a little bit more about what it means to have an invisible chronic illness (even when it's not so invisible anymore).
Thanks, if you managed to wade your way through all of that! Happy Friday everybody!
Doesn't that sound like a fabulous idea?
(This would be a good place for some smilies, but I have no idea how to incorporate those into my site, so you're just going to have to picture me giving myself a big dope slap.)
However, if you wanted to know a little bit about having a chronic illness, it is worthwhile to note that they are totally un-fricken-predictable. But, in lieu of excuses, which just generally suck anyways, I'm going to get right to the point:
Hi, my name (here) is NTE: I have chronic illnesses: They suck.
Because it seems like only half of you can even see my task bar (I don't know why... any ideas on that would be most welcome), and that means you can't click on the nice little health round-up I've got there for you, I'm just going to fill in the basics.
Again. (So all of you regular readers might want to zoom right past this - I won't be offended: I'd rather skip over it myself.)
Here is my current list of diagnoses:
Postural Orthostatic Tachycardia Syndrome POTS - Which is basically a failure in the regulation of my blood pressure, heart rate and blood flow when in an upright position. Currently semi-under control - which means that I no longer pass out any time I dare to go from a flat position to an inclined position, but I still can't stand unassisted (unless I'd like to add to the collection of bumps & bruises I've currently got) or sit for longer periods of time without feeling quite ill.
Fibromyalgia or FM/FMS - This is where the pain comes in people. And holy lord does it bring the pain. Fibromyalgia is either - depending upon who you ask - a completely useless, catch-all term for pain that doctors don't understand the nature or progression of OR a medically recognized rheumatic disorder of indiscriminate origin with very few treatment options and no known cure. Either way, you're pretty much screwed.
There's much discussion over whether or not the diagnosis of FM for chronic, unexplained pain has - like the over diagnosis of ADD & ADHD in children in the past 15 years - just become a way to group people whose pain doctors just don't understand yet, and what that's doing for those of us who are suffering, but I'm not going to get into that right now.
For right now, let me just say that FM is about pain - in specific & laughingly labelled 'tender' points on your body, as well as a general, all over 'achiness' - This is often described in terms of the feeling you get when you have the flu, but I think it would be more accurately described as the feeling you get when you have the flu, but have also just run a marathon, during which you gave birth and were hit by a bus. That's the gist of the everyday, all over 'achiness' I feel. It's a constant weight & heaviness, like a coat made of pain, that you wear all the time, everyday. As you can imagine, wearing this coat also wears you out. There are a ton of other symptoms related to FM (and CFIDS), but for me, it's all about the pain.
My FM is, right now, the thing that I am most concerned about - often I feel like if I could just slip out of this coat, just for a little while, then a lot of my other issues would be much more manageable.
CFIDS/CFS, Chronic Fatigue Immune Deficiency Syndrome and/or (- although I know that there is now a big discrepancy between what I have been told and what the medical & patient communities now believe to be true, I'm going to go with the labels I have been given over the past 13 years and try to steer clear (for now) of the Name Controversy) - Myalgic Encephalomyelitis, ME - This was my first diagnosis, and, like FM, it is both controversial and a sort of catch all, only this time for unexplainable fatigue. The major symptom I've experienced with my ME/CFIDS is overwhelming, unwavering fatigue _ which, at some point, I've just gotten used to. It hasn't gone away, I've just become accustomed to it as my partner in life. We make allowances for each other. Say I want to go to my grandmother's birthday party; the fatigue says, "Ok, rest up for two weeks. And then for three weeks afterwards, we'll stay in bed. ALL THE TIME." It's not quite as accomodating as I might like, but what are you gonna do?
I've also suffered from stomach issues that are most likely related to the ME/CFIDS, as well as cognitive difficulties, sensitivities to smells, noises, tastes, and sounds, and the severe sleep cycle disturbances that are so commonly associated with this disease: Example - when I first got sick I slept for 18-20 hours a day. For months at a time. And now? I'm lucky to get 18- 20 minutes in a row. Ah, the joys of cyclic illnesses.
Hypogammaglobulinemia - an immune disorder that basically means my immune system is unable to ferret out and attack invader cells. It's an antibody deficiency, and it makes itself known with recurrent and serious infections. A mostly healthy person who is 28 will, generally, not have had pneumonia more than once. Will, most likely not get 12 sinus infections in one year. Will be able to fight off colds and not develop odd rashes from random bacteria. That is not me. I am the one who, when you sneeze three aisles down in the store, thinks "Damn... I better not catch that." This is a treatable condition, thankfully, but the treatments only semi-work for me, so far. My body doesn't feel like producing the antibodies, and so chooses not to. I'm stubborn, even on a cellular level, I guess.
And the interrelatedness of all of my illnesses cannot be overlooked - CFIDS/ME is often connected to orthostatic intolerance issues, like POTS. FM and CFIDS/ME are rarely spoken of without each other, their symptoms overlap and twist and tangle into unbreakable knots. Hypogammaglobunemia and ME/CFIDS share many characteristics. The fact that the doctors often don't know what is making one symptom occur - and that I can't just say, "oh, well, that's definitely the CFIDS/ME that's causing that" - makes treatment options much more difficult.
And, most importantly of all, to me - none of them have a known cause or cure.
I also have two more 'normal' - and definitely more common - invisible illnesses - Asthma and Migraines. Neither of those is visible, and yet they're much more accepted (both in the public and within the medical community), and much better understood than the other diseases I have. Having these illnesses makes it all the more difficult for me to understand the whole "but you don't look sick" mentality.
A person who has asthma doesn't look sick, generally: but they are. Migraines aren't visible to anyone else, but I haven't run into any doctors who doubt that they're a very real and debilitating disease. Pain, because it's so personal, because it's so subjective and hard to describe, seems less valid a symptom to many medical professionals and people I meet in the course of my everyday life. The same with fatigue. And with both of these issues, people's own experiences color their impressions of these diseases. Everyone in the world has felt pain before, everybody thinks "Oh, my back has been killing me for weeks," or "I've been that exhausted before, you just have to sleep it off." But that's not the way CFIDS/ME works, and FM isn't a pulled muscle.
There's a handy-dandy round-up of my major illnesses and diagnoses. (We'll leave the minor ones for now, thank you very much.) Hopefully this will help as I talk a little bit more about what it means to have an invisible chronic illness (even when it's not so invisible anymore).
Thanks, if you managed to wade your way through all of that! Happy Friday everybody!
Monday, September 10, 2007
Going for a ride
We all know how hard it is to get everybody in a picture smiling at the same time, particularly when one of those people is a child. So imagine my surprise when this one actually came out with smiles all around! It's not perfectly composed (SisterCh and Sister K stuck their heads in from the back seat while I was trying to get Soon -to-be Sister-in-law and Baby Girl's picture), but I love it anyways. Her smile, my sisters being the goofs that they naturally are - it just works for me.
A quick aside - today kicks of National Invisible Chronic Illness Awareness week (a part of National Chronic Illness Month - seriously, who knew?), so come back all week long for some important posts about Invisible illnesses, living with chronic illness, and a billion other things. Thanks!
And head on over to Picture This for more Best Shot Monday pictures!
A quick aside - today kicks of National Invisible Chronic Illness Awareness week (a part of National Chronic Illness Month - seriously, who knew?), so come back all week long for some important posts about Invisible illnesses, living with chronic illness, and a billion other things. Thanks!
And head on over to Picture This for more Best Shot Monday pictures!
Saturday, September 08, 2007
Why is it so hard
(for me in particular, but I'm guessing for a lot of you too)
.... to make good decisions?
.... to do the things we know we should?
.... to keep track of time (how the heck did it get to be Saturday night already)?
.... to get past hurt feelings?
.... to get organized?
.... to figure out TiVo? (Probably the manual would be helpful, but SisterJ lost it)
.... to stop taking responsibility for other peoples' issues?
.... to believe in myself?
.... to tie a bow so that it looks like they do on TV?
.... to get the fricken answers I need?
.... help other people see themselves as clearly as I see them?
.... to have some sort of filter that protects me from being overwhelmed?
.... to recognize - and then STAY WITHIN - my limits?
.... to just be honest and stop holding things back?
.... to stop being afraid?
Crap, I'm in a mood tonight. Fighting with SisterCh over her feelings for Loser Boyfriend, who she was "totally over" less than a week ago, and now ... not so much. Loser Boyfriend who was verbally abusive (and I'm pretty sure physically, too). Loser Boyfriend who made her miserable. Who she turned into a completely different person in order to be with. Since they broke up, she's come back into herself - laughing, honest, kind, cranky, selfish, sweet; all by turns. Herself. And now, he wants her back. He's changed. She's changed. Maybe they can work it out.
It makes me want to throw up.
I don't understand that there were good times. I don't understand how wonderful the good times were. I'm a "person without a heart," because I can't see that her memories of good times matter to her enough for her consider going back to him, to consider breaking up with the boy she's started dating (who is 'different' and 'not him').
I guess I must be a cold, heartless bitch, because I don't care how many 'good times' you have, if you also have to put up with him throwing furniture or calling you a whore. I guess the fact that I've been sick and "never had a man in my life" (God, do sisters know where to stick the knives!) does mean that I don't know anything about relationships, because I don't think that it's reasonable for him to put his fist through the wall and tell you he's changed because he's "made an appointment to talk to someone." I guess the fact that he isolates you from your family - example: NOW - because we "just don't understand!!" is not a clear DANGER DANGER DANGER sign.
I guess I really am just plain clueless.
Sorry for the random rant: nothing I can say to anybody here, as SisterCh told me in confidence about all of this. Oh, they know we're fighting - I'm a ball of tension when fighting with someone - but I can't just scream: "She's making the WORST decisions of her life because she's scared. And lonely. And she wants something that never really was any good in the first place!!!"
Thanks for the ears.
And any advice would be gratefully received.
.... to make good decisions?
.... to do the things we know we should?
.... to keep track of time (how the heck did it get to be Saturday night already)?
.... to get past hurt feelings?
.... to get organized?
.... to figure out TiVo? (Probably the manual would be helpful, but SisterJ lost it)
.... to stop taking responsibility for other peoples' issues?
.... to believe in myself?
.... to tie a bow so that it looks like they do on TV?
.... to get the fricken answers I need?
.... help other people see themselves as clearly as I see them?
.... to have some sort of filter that protects me from being overwhelmed?
.... to recognize - and then STAY WITHIN - my limits?
.... to just be honest and stop holding things back?
.... to stop being afraid?
Crap, I'm in a mood tonight. Fighting with SisterCh over her feelings for Loser Boyfriend, who she was "totally over" less than a week ago, and now ... not so much. Loser Boyfriend who was verbally abusive (and I'm pretty sure physically, too). Loser Boyfriend who made her miserable. Who she turned into a completely different person in order to be with. Since they broke up, she's come back into herself - laughing, honest, kind, cranky, selfish, sweet; all by turns. Herself. And now, he wants her back. He's changed. She's changed. Maybe they can work it out.
It makes me want to throw up.
I don't understand that there were good times. I don't understand how wonderful the good times were. I'm a "person without a heart," because I can't see that her memories of good times matter to her enough for her consider going back to him, to consider breaking up with the boy she's started dating (who is 'different' and 'not him').
I guess I must be a cold, heartless bitch, because I don't care how many 'good times' you have, if you also have to put up with him throwing furniture or calling you a whore. I guess the fact that I've been sick and "never had a man in my life" (God, do sisters know where to stick the knives!) does mean that I don't know anything about relationships, because I don't think that it's reasonable for him to put his fist through the wall and tell you he's changed because he's "made an appointment to talk to someone." I guess the fact that he isolates you from your family - example: NOW - because we "just don't understand!!" is not a clear DANGER DANGER DANGER sign.
I guess I really am just plain clueless.
Sorry for the random rant: nothing I can say to anybody here, as SisterCh told me in confidence about all of this. Oh, they know we're fighting - I'm a ball of tension when fighting with someone - but I can't just scream: "She's making the WORST decisions of her life because she's scared. And lonely. And she wants something that never really was any good in the first place!!!"
Thanks for the ears.
And any advice would be gratefully received.
Tuesday, September 04, 2007
August's Perfect Post
In honor of Chronic Illness Awareness Month (which is September, in case you didn't guess), and because this post is sooo right in sooo many ways, I'm awarding my Perfect Post Award for August to the glorious Goldfish for her post on Chronic Illness: Experience is Cheap.
I can't explain how many absolutely fabulous things she says in this post, things I struggle with every single day, and things I wish that other people knew. I'm just going to give you some of the things that rang most true for me -
- The thing to realise is that the medical side of things is about a condition you happen to have, not about you. This may sound obvious to anyone who hasn't been ill for any great length of time, but it isn't.
- You mustn't stay angry with an illness or indeed the body which you may feel has let you down so badly. It's never going to say sorry, buy you a bunch of flowers and attempt to make it up to you
and finally -
- Sometimes you can think you are fighting the good fight when really you are running away from the problem. You might prefer to push yourself instead of resting or pacing, thinking this the brave thing to do when in fact it is slightly idiotic and nobody is going to admire you for running yourself into the ground. Eventually, you may get to a place where you don't think about your illness very much at all, but you don't get there by pretending it doesn't exist.
Please go over and check out the rest of the pretty Fish's wisdom, and head on over to Lindsay and MommaK for some other spectacular posts.
Monday, September 03, 2007
"Hea-wo?"
Here's my Best Shot Monday Shot... Baby Girl and Dad 'communicating.' Old phones are a big draw around here, although she mostly just holds it at her ear and walks away. The talking part? Not so much.
She's taken to calling all her Aunties (the 4 of us on this side, anyways) "Baaaaaaaaaaby" when we're not where she wants us to be. "Baaaaaaaaaaaby," she calls, wandering off down the hallway in search of whoever is not in sight. But she can say Papa, so this conversation was a little bit easier.
Happy Monday, everyone! Head over to Tracey's at Picture This for a truly gorgeous photo and the rest of the submissions.
An aside - Can you guys see a horizontal title bar underneath the West Wing Quote? That has links and my e-mail address? Because I can see it in my template, but I noticed I didn't see it when I clicked the link. (Ugh Html is soo not my language) Thanks!
She's taken to calling all her Aunties (the 4 of us on this side, anyways) "Baaaaaaaaaaby" when we're not where she wants us to be. "Baaaaaaaaaaaby," she calls, wandering off down the hallway in search of whoever is not in sight. But she can say Papa, so this conversation was a little bit easier.
Happy Monday, everyone! Head over to Tracey's at Picture This for a truly gorgeous photo and the rest of the submissions.
An aside - Can you guys see a horizontal title bar underneath the West Wing Quote? That has links and my e-mail address? Because I can see it in my template, but I noticed I didn't see it when I clicked the link. (Ugh Html is soo not my language) Thanks!
Sunday, September 02, 2007
After some ridiculous testing on Thursday and Friday, some ridiculous feeling sorry for myself & some very kind, thoughtful, surprising and not ridiculous packages that showed up at my door, I managed to keep a promise to Youngest Nephew Friday night, and we had ourselves a sleepover before school starts up again.
And I realized that the craziness of the hours we've watched them this summer (long, strenuous and exhausting for me) have been worth it. Because he's still my special boy, and when he's not here I miss him so much it hurts to breathe sometimes.
I also realize that admitting it 'out loud' makes me uncomfortable, because I feel the need to explain that while I understand that his parents had the right to move 45 minutes away (instead of 3 minutes away), I'm still hurt by it. I still feel wounded by the fact that we can't see him everyday, and sometimes, during the school year last year, it was almost a month between in person visits. And yes, I know that sounds reasonable to other people: it even sounds reasonable to me, but it doesn't feel reasonable. At all.
This is a boy who, like his sister now, Mum and I watched almost everyday when he was an infant. Even when I was living at college, I saw him at least 2 times a week. I helped potty train him, I'm the one who taught him how to make the pillow/blanket forts he loves so much; I could list all the little things that make up our connection, but they still wouldn't describe it.
They wouldn't describe how hard it was, at times when Big/Only Brother's hideously ugly temper was roaring or Soon-to-be Sister-in-law's inconsistency was showing its face in dangerous ways, to let him go home with them: His parents! Another admission that makes me feel exposed: I know I'm his Auntie, I know that they're good parents who love their kids immensely and do their best. And I know it sounds hideous, written down like that, as if I wanted to replace them... which wasn't it at all. I just wanted them - still want them - to see how special this boy is. To see his generous heart and be careful of harming it. To recognize his brilliant mind, and be sure to not let him use it to manipulate them into stuff that's not good for him. To acknowledge that he feels hurt or scared or lonely underneath his anger or whining or pouting. Which isn't to say that they don't see all that - it's just there's been times when they haven't.
So, yeah, anywyas....
This sleepover was like medicine for me - even though I feel like crap physically, even though it was horrible timing and I probably should've rescheduled - having the one on one time with him, getting to see him laugh at the books I chose for us to read together or watching him giggle at the Dinosaurs while Junior hits his Daddy on the head with a big "Not the Mama!" was definitely worth today's pain.
Even if I'm also "Not the Mama," being this kid's aunt is a balm on my heart.
I hope to have some pictures up either today or tomorrow, so you can see our adventure - We went out for Ice Cream! We stayed up till 10! We ate breakfast at (groan) 6! Some of us have enough energy to power the Eastern Seaboard! And some of us were so exhausted that they sent the energized one to Costco with his Grammy!
Hope you're all enjoying your (Labor Day in the US) weekend!
And I realized that the craziness of the hours we've watched them this summer (long, strenuous and exhausting for me) have been worth it. Because he's still my special boy, and when he's not here I miss him so much it hurts to breathe sometimes.
I also realize that admitting it 'out loud' makes me uncomfortable, because I feel the need to explain that while I understand that his parents had the right to move 45 minutes away (instead of 3 minutes away), I'm still hurt by it. I still feel wounded by the fact that we can't see him everyday, and sometimes, during the school year last year, it was almost a month between in person visits. And yes, I know that sounds reasonable to other people: it even sounds reasonable to me, but it doesn't feel reasonable. At all.
This is a boy who, like his sister now, Mum and I watched almost everyday when he was an infant. Even when I was living at college, I saw him at least 2 times a week. I helped potty train him, I'm the one who taught him how to make the pillow/blanket forts he loves so much; I could list all the little things that make up our connection, but they still wouldn't describe it.
They wouldn't describe how hard it was, at times when Big/Only Brother's hideously ugly temper was roaring or Soon-to-be Sister-in-law's inconsistency was showing its face in dangerous ways, to let him go home with them: His parents! Another admission that makes me feel exposed: I know I'm his Auntie, I know that they're good parents who love their kids immensely and do their best. And I know it sounds hideous, written down like that, as if I wanted to replace them... which wasn't it at all. I just wanted them - still want them - to see how special this boy is. To see his generous heart and be careful of harming it. To recognize his brilliant mind, and be sure to not let him use it to manipulate them into stuff that's not good for him. To acknowledge that he feels hurt or scared or lonely underneath his anger or whining or pouting. Which isn't to say that they don't see all that - it's just there's been times when they haven't.
So, yeah, anywyas....
This sleepover was like medicine for me - even though I feel like crap physically, even though it was horrible timing and I probably should've rescheduled - having the one on one time with him, getting to see him laugh at the books I chose for us to read together or watching him giggle at the Dinosaurs while Junior hits his Daddy on the head with a big "Not the Mama!" was definitely worth today's pain.
Even if I'm also "Not the Mama," being this kid's aunt is a balm on my heart.
I hope to have some pictures up either today or tomorrow, so you can see our adventure - We went out for Ice Cream! We stayed up till 10! We ate breakfast at (groan) 6! Some of us have enough energy to power the Eastern Seaboard! And some of us were so exhausted that they sent the energized one to Costco with his Grammy!
Hope you're all enjoying your (Labor Day in the US) weekend!
Wednesday, August 29, 2007
The vital things that are keeping me from blogging...
Sister K: Whatcha doin?
Me: readin stuff. pretending I'm accomplishing things. sweating. taking an actual shower (and recovering for 6 hours). hating commercials where furniture sings.
Y' know, the usual. ...
Me: readin stuff. pretending I'm accomplishing things. sweating. taking an actual shower (and recovering for 6 hours). hating commercials where furniture sings.
Y' know, the usual. ...
Wednesday, August 22, 2007
Because I'm up...
and if I see one more freaking Lunesta commercial, I might have to murder my t.v.
So, I may be a tad bit early (Shocker!!), but I'm getting my Theme Thursday up while I'm thinking of it.
As the wedding wheel starts to spin in earnest - guest lists and licenses and passports, oh my! - I find out just how much there is to be done. This week's project was the Save the Date cards. First, let's talk about how the whole idea of Save the Date-s is perhaps more understood by younger generations. My Nana was there as we went through the options, and was horrified that Sister J wasn't just going to call up everyone, or bump into them sometime soon, and just tell them when the wedding is going to be. "Why would they spend that kind of money?!?!" and "Well, that's ri-dicu-lous! Somebody should take your money away from you!" were two of the more supportive things she said. I totally took one for the team, there: stepped up to my Maid-of-Honor duties and distracted her right quick. Let her tell me all about the good old days of weddings where 25 people were invited and you just yelled down the street "Hey, I'm getting married..." and people showed up. (Honestly, I love good old days stories, but I think sometimes she's just making crap up...)
Anyways.
The Save the Dates are 1 step from being completed: the whole, finding somewhere we can afford to have them made step. But they're all designed, and pretty snazzy, if I do say so myself: unique and totally the couple! Before we wound up there, however, I spent a good 2 hours working on some variation of the image I'm posting for today's theme: Fade. (We wound up doing something drastically different... it would be really great if my sister the bride could MAKE A DECISION AND STICK TO IT!!!)
Here's a draft of Option B: I would have edited the people in the background out (we did in a different, similar pic), but she'd changed her mind by that point, so why bother? I still like it.... I hope you do to.
Here's Sister J and her Fiance, walkin off into the sunset....
Head on over to Picture This for more Theme Thursdays!
So, I may be a tad bit early (Shocker!!), but I'm getting my Theme Thursday up while I'm thinking of it.
As the wedding wheel starts to spin in earnest - guest lists and licenses and passports, oh my! - I find out just how much there is to be done. This week's project was the Save the Date cards. First, let's talk about how the whole idea of Save the Date-s is perhaps more understood by younger generations. My Nana was there as we went through the options, and was horrified that Sister J wasn't just going to call up everyone, or bump into them sometime soon, and just tell them when the wedding is going to be. "Why would they spend that kind of money?!?!" and "Well, that's ri-dicu-lous! Somebody should take your money away from you!" were two of the more supportive things she said. I totally took one for the team, there: stepped up to my Maid-of-Honor duties and distracted her right quick. Let her tell me all about the good old days of weddings where 25 people were invited and you just yelled down the street "Hey, I'm getting married..." and people showed up. (Honestly, I love good old days stories, but I think sometimes she's just making crap up...)
Anyways.
The Save the Dates are 1 step from being completed: the whole, finding somewhere we can afford to have them made step. But they're all designed, and pretty snazzy, if I do say so myself: unique and totally the couple! Before we wound up there, however, I spent a good 2 hours working on some variation of the image I'm posting for today's theme: Fade. (We wound up doing something drastically different... it would be really great if my sister the bride could MAKE A DECISION AND STICK TO IT!!!)
Here's a draft of Option B: I would have edited the people in the background out (we did in a different, similar pic), but she'd changed her mind by that point, so why bother? I still like it.... I hope you do to.
Here's Sister J and her Fiance, walkin off into the sunset....
Head on over to Picture This for more Theme Thursdays!
Making myself hit 'publish...'
I read other people's blogs and sometimes I feel like a real phony. Because everything they're saying seems so real, so true, so honest, and I know I'm not as open as that. Are there things that they can't say? Things that they don't say?
Because there are things that go unwritten, things in my heart that I feel uncomfortable putting up here ... not that you all aren't the sweetest & most supportive bunch of commenters ever, but for various reasons.
Because I'm afraid that someday, eventually, my family will find this page, and what I've said could hurt them. Or me. Or our relationships.
Because I'm not good at confrontations ---
(Oh, if only you knew how uncomfortable just the thought of them makes me... I have never been in a fight, or around a fight - verbal, particularly, with painfully poisonous arrows being flung about, back and forth, at the exact wrong/right, most tender spot - without feeling like I had to throw up. And sometimes, actually throwing up.) It has a lot to do with the house I've grown-up in, my parents, their parents, a whole bunch of family junk, but I just have issues with confrontation - with tension and atmospheric unease, dislike, hatred. Even when I have to discuss something about serious with someone, when I know there's no other choice, the air in my throat turns heavy and dense, as if it's stuck there, unable to go in any further or come back out. And my mouth suddenly gets too wet - like when you're sick (or drunk, I've heard) and get the swallows. I. Am. Not. Good. At. Tension.)
---- so there are things I don't say here, in the hopes of making this, not particularly a happy place, just not an unhappy place - not just for me, as I care that y'all like it here too, but mostly for me. Because I live in a tense house, a tense situation, with a chronic illness that makes me feel as my world can change at any moment - most often, not in a positive way - and so, I've needed this place... just to be... content.
Other times, I don't write because I think of what I want to say, and then... I can't think of a way to say it. Even when I want to talk about things that are hard - like my father, or why I'm so angry with my Nana about the PUS, or how it feels to be 28 and still dependent on your parents - the words all rattle around in my head, and come out here not making any sense. And I can't make myself publish those entries (I wonder if I'll be able to make myself hit publish on this one, once I've thought it all the way through), because .... because I want to be able to communicate those things in such a way that somebody - any of you - will be like: "Oh, I get that."
That's all - what you feel about what I write is your own business -
If you don't agree, I can take that. Regardless of what I said about confrontation above: it's not that I can't take people disagreeing with me - I can, I do, people disagree. It's the way some people (particularly in my family) choose to deal with that that makes me ... tense... I sometimes like it better when we all don't agree, because then you've given me another way to look at things. Maya's Granny said to me, a while back, for example, that if I kept giving my Nana the chance to disappoint me, I shouldn't be surprised. And she was right. I'm not surprised anymore (OK... I'm trying not be surprised anymore): hurt, yes. I have a right to be hurt by her choices, as they impact me, our home, our family, our relationship. But I shouldn't be surprised that she hasn't taken me into account (again), because that's how she operates. But I never thought of it that way - that I should just try to be surprised if she didn't hurt me, if she actually chose the right thing - because that's what would really be out of character.
If you do agree, that's great, too...
But what matters to me, is whether or not I said something that makes sense here. So the babbling stuff - the rants that start off making sense and then degrade into "well - I think... that is, I think I think that...."- I don't publish that stuff.
I write about what's important here - though - whether it's positive or not, as much as I can, because this is a place for me to be content, and I wouldn't be if I were lying/holding too much back. And I try to make as much sense here as I possibly can. And now I'm wondering if this post has any point at all...
I guess what I'm trying to say is, that I appreciate the place to open my heart, as much as I can. And I appreciate that you all listen, and take care with my heart and words, and our place here.
Back when I started writing here, I thought: well, this is just for me. Just for me to say things privately, but still out loud. But I'm not sure that's what it is anymore. At least not totally.
I hope that the things I don't say, yet, aren't getting in the way here. I hope you know that I don't lie: not ever. And that I try my best to write with the astonishing honesty and clarity I see in the writers I love and admire.
Monday, August 20, 2007
Legs
One of the things I do in order to be able to move at all is gentle stretching throughout the day. On Friday, after playing cars for a while, Baby Girl wandered off with Grammy, leaving me on the floor alone. And I was pretty sore, so I laid on my back, stretched my legs up on the door (in kind of an L-shape). There's a name for this stretch, but I don't remember it.
Baby Girl found me like that, then tried to stick her legs up on the wall too - while standing. I helped her out a bit, gave her one of my pillows and showed her how to put her feet back up.
It was just one of those sponaneous things, the kind of things kids throw at you so you don't start seriously considering selling them to the circus.
Anyways, that's my Best Shot for this Monday, head on over to Tracey's at Picture This for some more Monday pictures.
Baby Girl found me like that, then tried to stick her legs up on the wall too - while standing. I helped her out a bit, gave her one of my pillows and showed her how to put her feet back up.
It was just one of those sponaneous things, the kind of things kids throw at you so you don't start seriously considering selling them to the circus.
Anyways, that's my Best Shot for this Monday, head on over to Tracey's at Picture This for some more Monday pictures.
Saturday, August 18, 2007
Thursday, August 16, 2007
I swear to you, people
I just can't keep up lately.
So, since I love you and you are all kind enough to keep coming back here, but I can't get up enough energy for a whole talk-y kind of post, have some bullets.
The end. (Except - Yeah, I meant to find a Theme Thursday picture, but couldn't think of anything to fit fly... if I come up with it tonight, I'll post it then. Hopefully.)
So, since I love you and you are all kind enough to keep coming back here, but I can't get up enough energy for a whole talk-y kind of post, have some bullets.
- I got a new bookcase! And it is purty. Mum & I put it together ourselves (well, I read the directions, which is an important part of the putting together, thank you very much.) I'm still in the process of getting books into it. With no kiddos next week - their parents are taking them to the Cape on vacation - I'll hopefully get more accomplished.
- My summer cold melted (almost literally) right into another major sinus infection - my 5th (?) since coming off my prophylactic antibiotics. I think it's time to rethink that decision.
- Baby Girl is picking up words faster than we can put them down: yesterday she just mimicked my (fabulous) cow impression. "Mooooooooooooooo" and she kept doing it all day. She also learned 'baby' and 'ball' in sign language, and remembered airplane from last week, even though I didn't think she was paying any attention last week. (We use both, and that's a post I've been meaning to write, too. Added to the pile.) Don't be fooled - our 15 month old vocabulary still consists of mostly grunts, pointing, nodding, odd little chirps and an occasional 'ssssssssss,' but she's learning fast.
- A few weeks ago, on a rare beautiful and not too hot day, I had my window open and a man was jogging by. Men jog by all the time, but my first little out-of-the-corner-of-my-eye glance at this guy gave me a kind of zap - I thought he was my father. My father, not my dad. The one who died (oh my gosh, has it been) 8 years ago. On second & third much closer looks, he still bore a striking resemblance to my father - short, compact build, but muscular; facial hair in that (completely uncomplimentary) Fu Manchu-ish style; face pulled tight - almost grimacing - with that 'I'm focusing here!' look - but there were plenty of differences: Their coloring was similar, but my father's skin seemed permanently tanned - rougher, more leathery, perhaps from his time on the decks of Navy ships, whereas this guy's tan seemed new and shiny; My father would probably have a bald spot by now, as his hair was thinning when he died, but I couldn't picture him with both the facial hair and the shiny spot on the back of his head (surely, one of would have been able to talk him out of that...); and my father never ran in anything other than his fatigues. Ever.
My relationship with my father was - is - complicated and painful and wonderful (although those are the hardest times for me to remember), and the jolt I got from seeing this guy whiz by was too painful for me to think that all the years he's been gone have changed that. But it did make me look at the calendar, did remind me that his anniversary would be the next day, did make me pick up the phone and call my grandmother, help take her mind off of it for a little while.
So, thanks, random Jogger Guy.
- We're supposed to have thunderstorms tonight - already, I can feel the air changing a bit - but I just don't feel up to taking a shower yet. Sadly, if I don't get to it tonight, there's always waiting till tomorrow. (Although I really, really need to wash my hair.... maybe I can get enough energy for just that?)
- Random crazy dream from last night's 22 whole minutes - interrupted, of course - of sleep: talking to my Nana about the PUS, trying to get her to see reason, only we're arguing, screaming at each other, her totally ignoring what I have to say. And, of course, we're having this fight in the bra department at a store in the local mall. And as I'm screaming, the bra lady has to shout over me, "We don't carry bras that big in the store!!!" Nice. I wonder if the bridesmaid's dress shopping wasn't a little bit traumatic after all? (Seriously, my dress only comes in one size bigger than the one I am wearing. I think I wouldn't mind being bigger if I got to eat whatever I felt like, but since so much of my weight seems to be stuck on b/c of meds, I'm really not happy about it....)
The end. (Except - Yeah, I meant to find a Theme Thursday picture, but couldn't think of anything to fit fly... if I come up with it tonight, I'll post it then. Hopefully.)
Monday, August 13, 2007
Sisters - Dress Shopping 8-11-07
Here's My Best Shot Monday photo - from our Bridesmaid's Dress Shopping expedition on Saturday.... That's all my sisters:
Sister K (18 - off to Harvard in 3 weeks!)
Sister Ch (21 - )
Sister S (30 - mother of Oldest Nephew, seriously hasn't worn a dress in almost 12 years)
Sister J (23 - the Bride to be!)
Sister-in-law to be/Sister Nc (38 - Mum of Youngest Nephew and Baby Girl)
Believe it or not, we finally managed to find a dress that compliments all of us (or, at least we think it does... a size 8 was NOT fitting on my body, and we guesstimated as best we could). Either way, it was a good day, even though it was still too soon for me to try to leave the house. I did ok - it's just two steps forward, four steps back, is all. But I'm resting. R_E_S_T_I_N_G. Editing photos, which I enjoy. Reading boooks, which, we all know I love. I'll make MBSM rounds now, after I finish this last little tweaking...
Have a great week everybody!!
Sister K (18 - off to Harvard in 3 weeks!)
Sister Ch (21 - )
Sister S (30 - mother of Oldest Nephew, seriously hasn't worn a dress in almost 12 years)
Sister J (23 - the Bride to be!)
Sister-in-law to be/Sister Nc (38 - Mum of Youngest Nephew and Baby Girl)
Believe it or not, we finally managed to find a dress that compliments all of us (or, at least we think it does... a size 8 was NOT fitting on my body, and we guesstimated as best we could). Either way, it was a good day, even though it was still too soon for me to try to leave the house. I did ok - it's just two steps forward, four steps back, is all. But I'm resting. R_E_S_T_I_N_G. Editing photos, which I enjoy. Reading boooks, which, we all know I love. I'll make MBSM rounds now, after I finish this last little tweaking...
Have a great week everybody!!
Wednesday, August 08, 2007
"I don't hold with all the washing," grumbled Eeyore. "This modern Behind-the-ears nonsense."
Oh, it's a melancholy day here in Massachusetts. Grey and overcast, raining and foggy. Air's so heavy that we still have the air conditioning on, which makes it freezing and humid, all at the same time.
But still, it seems to fit my mood.
After about 17 minutes of sleep last night, I 'woke up' in a funk. I haven't showered in a week, and I'm feeling guilty for not letting the kiddos come today because I'm still trying to battle my way back from this latest flare. I'm having the kind of day where I just want to curl up in a ball and tell everyone to "GO AWAY!" Because it hurts to lie still and it hurts to move, it hurts to have clothes touch my skin or to lean against even the softest pillow. It hurts to think, or talk, or anything, and today, I'm just not up for pretending it doesn't.
I don't always feel like this, even when I feel this bad. Sometimes, most times, I just have to adopt as much of a game face/battle-through it attitude as I can. And I do - I do a lot: I play with, feed, teach the kids; I read books and write reviews; I organize photos or make scrapbook pages; I talk to my friends - IRL or online; I do research for one of the millions of things I or another family member need... I've adapted in so many ways to being sick, finding things I can do and be passionate about given the limitations I have. Playing to my new strengths, so to speak.
And even writing that has cheered me up a bit, because I have accomplished a lot. I do do a lot, it's just today - with the grey skies and my greasy hair - it doesn't really seem like it. So today's prescription is as follows:
But still, it seems to fit my mood.
After about 17 minutes of sleep last night, I 'woke up' in a funk. I haven't showered in a week, and I'm feeling guilty for not letting the kiddos come today because I'm still trying to battle my way back from this latest flare. I'm having the kind of day where I just want to curl up in a ball and tell everyone to "GO AWAY!" Because it hurts to lie still and it hurts to move, it hurts to have clothes touch my skin or to lean against even the softest pillow. It hurts to think, or talk, or anything, and today, I'm just not up for pretending it doesn't.
I don't always feel like this, even when I feel this bad. Sometimes, most times, I just have to adopt as much of a game face/battle-through it attitude as I can. And I do - I do a lot: I play with, feed, teach the kids; I read books and write reviews; I organize photos or make scrapbook pages; I talk to my friends - IRL or online; I do research for one of the millions of things I or another family member need... I've adapted in so many ways to being sick, finding things I can do and be passionate about given the limitations I have. Playing to my new strengths, so to speak.
And even writing that has cheered me up a bit, because I have accomplished a lot. I do do a lot, it's just today - with the grey skies and my greasy hair - it doesn't really seem like it. So today's prescription is as follows:
- Take all meds (cuz sometimes, like an idiot, when I don't feel well I forget/forget on purpose just to be stubborn)
- Take a shower and then shower coma
- Eat something yummy
- Watch funny movies/read comfort reads
- Know that everybody gets bad moods, not just me (cuz it sometimes really feels like I am being so completely ungrateful & hateful)
- Try to get some actual sleep
- Wish everybody a happy Wednesday
Tuesday, August 07, 2007
reading
Inspired by this post over at the Musings of Great Eric, I started thinking about the books we read in high school, the books I wish we'd read, and the whole high school English experience.
It's hard for me, teacher-to-the-bone, to admit that it was teachers who turned me off of reading at a certain point. Just as it was teachers who helped me love to read in the first place, it was the curriculum and lack of flexibility in my courses that made me think, at times: "I'm never picking up a book again."
And it wasn't the workload. I'm a quick reader - 100+ pages an hour, minimum (unless the language is really hard to get through, I'm looking at you Melville!) And I've always been able to read three or four books at one time - some fiction here, so non-fiction there, a cookbook & a craft book percolating in the corner. So it wasn't that the assignments were too much work... it was that they were too boring.
And that sucks.
Because BOOKS AREN'T BORING!!!
And there should have been some way for us to learn about the things 'they' think we need to know without making it so ridiculously boring that some of us (ahem, this is where I raise my hand) don't spend an entire year learning just enough from class discussions and quick scans of the text to get a good grade instead of actually reading and enjoying the books.
You can ask anybody old or young - they'll all have some horrible story about the time their English teacher made them study Julius Cesar for over 6 months or write a tome on the importance of symbolism in Ethan Frome.
Another confession: Ethan Frome is the worst book I have ever read. And I have read some real dreck - romance novels with no plots, stereotypes galore & annoying, no-brained characters; 'literature' that was told in three different, 1st person's points-of-view, with no clear transition between them; science textbooks; the dictionary. Ethan Frome was, undeniably, the worst of the lot.
The passion with which I still hate this book is surprising: I remember the way I would picture him out there in the snow, dragging his leg behind him, gathering wood or something and want - with a frightening intensity - some wolf to come jumping out of the woods and devour him, just so that something interesting would be happening in this damn story! When we'd discuss the book in class I would draw wolves (or, more precisely, doodle wolf-shaped beings) and hope against hope that maybe it would come out of the paper and eat me instead.
Anyways.
The point is that if the way we teach English (which was always, by far, my best and favorite subject) was so disheartening, frustrating, and off-putting to me, I can understand why so many adults think of reading as something they'd do only as an absolutely last resort. (It also makes me wonder if math, science and other subjects I disliked would have been more accessible to me if taught differently.)
And that's just not right. Because when English is taught well, it can open you up to the entire world.
Here are two of my own examples:
It's Senior Year, we're reading A Pilgrim's Tale, and the teacher asks us to come up with our own poems in identical verse. It can be on any topic - the only requirements are that it follows the pattern, is a certain length and is passed in by the date he sets. I wind up writing about a kingdom where two brother's fight for their father's throne, and, b/c I am having a hard time rhyming 'throne,' decide that the kingdom's domain is over ice cream cones. Being able to infuse the poem with my own special brand of wit, it winds up being more than a simple assignment: I take it seriously, write it on parchment styled paper, in my own calligraphy (also learned that year), and it winds up being twice as long as the original requirements. (I also got an A, thank you very much.) And I learn that poetry is not all about syllables and beats - that it's about heart and humor and feelings and freedom.
It is 6th Grade and everyday after lunch recess, we file into the classroom, throw our coats near their hooks, slump into our chairs. I didn't know it then, but this is a danger zone for teachers: kids coming in, chatting, bellies full and amped either way up or way down from their running around ---> Getting them to refocus on whatever work you want them to do isn't easy. But every single day, our 6th grade teacher waits for us all to be sitting, and then picks up a chapter book and starts reading it aloud. The joys of being read to: pure pleasure! James and the Giant Peach, The Indian in the Cupboard, The Secret Garden - none of them on our curriculum guides, none of them books we are reading in class. These are books just for fun. Just for us: A special treat. I can still hear her describing the juicy peach, uncovering the secret of the mysterious night-crying, turning the key in the cupboard. Amazing. And I learn that books are not just things we struggle through,
word by word, but instead are whole worlds, just waiting to be discovered. That reading aloud is a pleasure to the reader and to her listeners. That spending the time counting paragraphs till my turn may not be the best use of my time (although, I did that until my very last day of college, the fear of being caught having to read a paragraph with a word I couldn't pronounce was too great.)
Other stories along the way attracted my attention: the tension of The Telltale Heart or The Lottery; the dialogue in some Shakespeare's plays (and in others, definitely NOT); the passionate poems of Christina Rossetti, Emily Dickinson, Walt Whitman; the time a teacher brought in a poem that connected to her heart, and sent us out looking for one that spoke to ours.
But the majority of my classes consisted of breaking down allegories or studying up on symbolism... on dissecting what each word uttered by Gatsby really, really meant or trying to explain what motivates Dickens' characters (aside from the fact that he got paid by the word, that is).
By turning reading into a task, a chore, a 'subject' rather than treating it like the exciting, exhilarating adventure it is meant to be, English class is killing generations of readers.
There are ways to make English - even in high school - a subject that enthralls students. There have to be. You can teach the basics, the necessities, and still keep kids/people interested in reading. It's not an impossible task. Because English is about language and literature. And literature is about life: How could life possibly be boring?
(I have some suggestions for this, but I'm going to hold back on those for another post... I'd love to hear some of your favorite/least favorite memories, and how you think we could improve high level English classes...Go!)
It's hard for me, teacher-to-the-bone, to admit that it was teachers who turned me off of reading at a certain point. Just as it was teachers who helped me love to read in the first place, it was the curriculum and lack of flexibility in my courses that made me think, at times: "I'm never picking up a book again."
And it wasn't the workload. I'm a quick reader - 100+ pages an hour, minimum (unless the language is really hard to get through, I'm looking at you Melville!) And I've always been able to read three or four books at one time - some fiction here, so non-fiction there, a cookbook & a craft book percolating in the corner. So it wasn't that the assignments were too much work... it was that they were too boring.
And that sucks.
Because BOOKS AREN'T BORING!!!
And there should have been some way for us to learn about the things 'they' think we need to know without making it so ridiculously boring that some of us (ahem, this is where I raise my hand) don't spend an entire year learning just enough from class discussions and quick scans of the text to get a good grade instead of actually reading and enjoying the books.
You can ask anybody old or young - they'll all have some horrible story about the time their English teacher made them study Julius Cesar for over 6 months or write a tome on the importance of symbolism in Ethan Frome.
Another confession: Ethan Frome is the worst book I have ever read. And I have read some real dreck - romance novels with no plots, stereotypes galore & annoying, no-brained characters; 'literature' that was told in three different, 1st person's points-of-view, with no clear transition between them; science textbooks; the dictionary. Ethan Frome was, undeniably, the worst of the lot.
The passion with which I still hate this book is surprising: I remember the way I would picture him out there in the snow, dragging his leg behind him, gathering wood or something and want - with a frightening intensity - some wolf to come jumping out of the woods and devour him, just so that something interesting would be happening in this damn story! When we'd discuss the book in class I would draw wolves (or, more precisely, doodle wolf-shaped beings) and hope against hope that maybe it would come out of the paper and eat me instead.
Anyways.
The point is that if the way we teach English (which was always, by far, my best and favorite subject) was so disheartening, frustrating, and off-putting to me, I can understand why so many adults think of reading as something they'd do only as an absolutely last resort. (It also makes me wonder if math, science and other subjects I disliked would have been more accessible to me if taught differently.)
And that's just not right. Because when English is taught well, it can open you up to the entire world.
Here are two of my own examples:
It's Senior Year, we're reading A Pilgrim's Tale, and the teacher asks us to come up with our own poems in identical verse. It can be on any topic - the only requirements are that it follows the pattern, is a certain length and is passed in by the date he sets. I wind up writing about a kingdom where two brother's fight for their father's throne, and, b/c I am having a hard time rhyming 'throne,' decide that the kingdom's domain is over ice cream cones. Being able to infuse the poem with my own special brand of wit, it winds up being more than a simple assignment: I take it seriously, write it on parchment styled paper, in my own calligraphy (also learned that year), and it winds up being twice as long as the original requirements. (I also got an A, thank you very much.) And I learn that poetry is not all about syllables and beats - that it's about heart and humor and feelings and freedom.
It is 6th Grade and everyday after lunch recess, we file into the classroom, throw our coats near their hooks, slump into our chairs. I didn't know it then, but this is a danger zone for teachers: kids coming in, chatting, bellies full and amped either way up or way down from their running around ---> Getting them to refocus on whatever work you want them to do isn't easy. But every single day, our 6th grade teacher waits for us all to be sitting, and then picks up a chapter book and starts reading it aloud. The joys of being read to: pure pleasure! James and the Giant Peach, The Indian in the Cupboard, The Secret Garden - none of them on our curriculum guides, none of them books we are reading in class. These are books just for fun. Just for us: A special treat. I can still hear her describing the juicy peach, uncovering the secret of the mysterious night-crying, turning the key in the cupboard. Amazing. And I learn that books are not just things we struggle through,
word by word, but instead are whole worlds, just waiting to be discovered. That reading aloud is a pleasure to the reader and to her listeners. That spending the time counting paragraphs till my turn may not be the best use of my time (although, I did that until my very last day of college, the fear of being caught having to read a paragraph with a word I couldn't pronounce was too great.)
Other stories along the way attracted my attention: the tension of The Telltale Heart or The Lottery; the dialogue in some Shakespeare's plays (and in others, definitely NOT); the passionate poems of Christina Rossetti, Emily Dickinson, Walt Whitman; the time a teacher brought in a poem that connected to her heart, and sent us out looking for one that spoke to ours.
But the majority of my classes consisted of breaking down allegories or studying up on symbolism... on dissecting what each word uttered by Gatsby really, really meant or trying to explain what motivates Dickens' characters (aside from the fact that he got paid by the word, that is).
By turning reading into a task, a chore, a 'subject' rather than treating it like the exciting, exhilarating adventure it is meant to be, English class is killing generations of readers.
There are ways to make English - even in high school - a subject that enthralls students. There have to be. You can teach the basics, the necessities, and still keep kids/people interested in reading. It's not an impossible task. Because English is about language and literature. And literature is about life: How could life possibly be boring?
(I have some suggestions for this, but I'm going to hold back on those for another post... I'd love to hear some of your favorite/least favorite memories, and how you think we could improve high level English classes...Go!)
Monday, August 06, 2007
MBSM
Here's today's My Best Shot Monday shot...
Youngest Nephew, buildin' himself a hiding spot.
We've been building this kid tents and forts and hiding places, ever since he was a baby: Blankets draped between the couch and the coffee table, pillows piled up in a tower, under the table as a whole new world. He's old enough now to have taken over the buiding himself, but he still lets me help. As a kid, there's nothing better than feeling that you're in your own space, your own secret world where no one can find you unless you want them to. (Actually, as an adult, I could certainly use a bit of that too...) Having him here with us this summer has been bittersweet (healthwise, not so good; heartwise, all that's good), and I can't believe it's almost September and he won't be able to come up every week anymore.
They're here today, though, so I'll sneak around to Tracey's for all the MBSM photos tonight. Have a great day, all!
Wednesday, August 01, 2007
Some valuable sharing
Finally slogging my way through my Bloglines account, I've stumbled across some things I think should be shared. So, here we go...
I'm a new reader over at Pretty, Fizzy Paradise, but Kalinara's (almost month old, so I'm a bit late to the party, unfortunately) post "All women are me, damnit!!" is amazing. Here's just a tiny piece of her brilliance:
You know what's worse though? Random people will walk right up to you and think they have the right to talk about this stuff to your face! "Oh honey, you'd be so pretty with a little make-up." "Is your hair real?" "Lose some weight, you fat bitch!" When you're a woman, people think they can just say this. And if you get mad, you're the irrational one. "Sheesh, what's her problem?"
I cannot stress enough how great this post is... go over and check it out, please!
I'm a new reader over at Pretty, Fizzy Paradise, but Kalinara's (almost month old, so I'm a bit late to the party, unfortunately) post "All women are me, damnit!!" is amazing. Here's just a tiny piece of her brilliance:
You know what's worse though? Random people will walk right up to you and think they have the right to talk about this stuff to your face! "Oh honey, you'd be so pretty with a little make-up." "Is your hair real?" "Lose some weight, you fat bitch!" When you're a woman, people think they can just say this. And if you get mad, you're the irrational one. "Sheesh, what's her problem?"
I cannot stress enough how great this post is... go over and check it out, please!
Monday, July 30, 2007
Giving Hugs!
I missed out on a couple of Best Shot Mondays (what with the whole I-am-spam debacle), but I'm ready to play now! Here's a big welcome back hug from Only Niece, who's up to 7 teeth now, I'll have you know. She's getting so big, so fast!
Hey everybody!
a bit of commenting back.
Ms. JaniceNW said -
Hey.
Welcome back.
Why don;t you have a link to my blog cuz I have one to yours on mine? Hmmmmmmmmmmmmmm? Well? I want an answer Missy!
I missed you like crazy. Really.
Hugs.
Janice - I missed you like crazy, too! And the reason your blog isn't linked to mine is because I am sooooooooooooooo far behind that I haven't updated my link list in.... months. BUT - no worries: I aim to do so almost immediately!
Gina: I'm so glad you like children's literature, too. So many of my friends are kindergarten teachers or mommies, so we never thought that there was anything strange about it. But I've run into a bunch of book snobs, just lately, who've turned their noses up at some of my recommendations. Blah to them.
Seahorse - Thanks so much for the meme-love! It's going on my list... (hopefully, that means I'll get to it soon.)
Alrighty? And a big HEY to all the lurkers (I know you're lurking, cuz my sitemeter tells me so)! I'm a lurker at many sites, so I'm feeling so special that you guys are hanging around here.
Ms. JaniceNW said -
Hey.
Welcome back.
Why don;t you have a link to my blog cuz I have one to yours on mine? Hmmmmmmmmmmmmmm? Well? I want an answer Missy!
I missed you like crazy. Really.
Hugs.
Janice - I missed you like crazy, too! And the reason your blog isn't linked to mine is because I am sooooooooooooooo far behind that I haven't updated my link list in.... months. BUT - no worries: I aim to do so almost immediately!
Gina: I'm so glad you like children's literature, too. So many of my friends are kindergarten teachers or mommies, so we never thought that there was anything strange about it. But I've run into a bunch of book snobs, just lately, who've turned their noses up at some of my recommendations. Blah to them.
Seahorse - Thanks so much for the meme-love! It's going on my list... (hopefully, that means I'll get to it soon.)
Alrighty? And a big HEY to all the lurkers (I know you're lurking, cuz my sitemeter tells me so)! I'm a lurker at many sites, so I'm feeling so special that you guys are hanging around here.
Friday, July 27, 2007
Glory, Hallelujah ...
Well, Blogger has finally seen the error of its ways and enabled me to blog again! I am not SPAM! Aren't you so happy for me?? I knew you would be.
Quick Update for all of you who contacted me and were wondering: My Grandmother's party was great - about 3/5ths of us made it, which made for a decent sized mob. But, Grandmother was excited, surprised by who managed to show up, and happy. Two weeks later, she's still happy, so that's what counts. Of course she and I are both still worn out (and she has a pretty good excuse, if you ask me), so the mandatory enforced blog vacation did come at a pretty good time for me.
Although you did miss the DRAMA of Sister K (youngest sister, soon to be Harvard student)'s break-up and re-up with her boyfriend of 8 months. And my patience when this DRAMA combined with Sister J's wedding DRAMA to prohibit me from reading the newest Harry Potter until Sunday.
Which I then read in six hours, and cried for probably a good third of that. How amazing was the Deathly Hollows, people? Did you read? Did you love it? Am I - in less than a week - much too late for the discussion? Well, that's too bad, because I have a lot to say! A spoiler filled post will soon be sure to follow!
Other than that, I am recovering and reading and attempting to clean my room (again!); and, in my foolish attempt to show the 'real me' (minus the name) here on the blog, I will now regale you with the tale of why I need a new bookcase:
So, I had, in my very small room, four bookcases: two tall, 5 shelf, regular bookcases, and two smaller two shelf (plus desk-level top) bookcases. And they are full. They are very full. They are so full that I also have three baskets full of ToBeRead books, a 24 gallon Rubbermaid bucket full of books ToBeTraded (on PaperBackSwap), an old amazon.com box full of books ToBeReviewed, and various piles of other books, on my desktop,, inside my wardrobe, and under the television. In case you were wondering, I like to read.
One of the smaller bookcases was filled with children's books: Books I used to teach/tutor with, books for Youngest Nephew and now his baby sister, and books for me. Because children's books are for EVERYONE, people! (Ahem - Harry Potter is not the only acceptable children's book - surprise! Now stepping off soap-box...) And one day, when I wasn't feeling quite my best (shock!), I was doing more than I should (this many shocks in one post - how will you handle it?!) and I tried to stand up to get something from a pile on the desk, and leaned on the smaller bookcase, and fell into this bookcase. And broke the bookcase into a sad number of pieces. Seriously.
It was just one of those particle board bookcases they sell at Target, the ones you put together yourself? But WOW did it a)hurt, b)crumple like dust, c) make me feel both stupid and gi-nor-mously fat. Incredible amounts of fun, I tell ya.
So, now, all of those books, plus all the books I've gotten since sit in little piles on the floor, because I refuse to pay $110 for a bookcase and I also don't want to buy another Rubbermaid container, because where will I put it once I have my bookcase? But, since it's been a while (like... 5 months?) since I broke the bookcase, and the piles are now getting a bit out of hand (see photos, although, they're usually neater piles, I just wanted to be sure you could see some of the titles, because that's what I'd be looking at)... maybe I should just give in and buy a bucket?
Anyways... glad to be back. Will be posting more often, because I missed being able to talk to y'all here, while I was gone (although my commenting did improve a bit, I must say). Hope everybody is doing well! Love, NTE
Quick Update for all of you who contacted me and were wondering: My Grandmother's party was great - about 3/5ths of us made it, which made for a decent sized mob. But, Grandmother was excited, surprised by who managed to show up, and happy. Two weeks later, she's still happy, so that's what counts. Of course she and I are both still worn out (and she has a pretty good excuse, if you ask me), so the mandatory enforced blog vacation did come at a pretty good time for me.
Although you did miss the DRAMA of Sister K (youngest sister, soon to be Harvard student)'s break-up and re-up with her boyfriend of 8 months. And my patience when this DRAMA combined with Sister J's wedding DRAMA to prohibit me from reading the newest Harry Potter until Sunday.
Which I then read in six hours, and cried for probably a good third of that. How amazing was the Deathly Hollows, people? Did you read? Did you love it? Am I - in less than a week - much too late for the discussion? Well, that's too bad, because I have a lot to say! A spoiler filled post will soon be sure to follow!
Other than that, I am recovering and reading and attempting to clean my room (again!); and, in my foolish attempt to show the 'real me' (minus the name) here on the blog, I will now regale you with the tale of why I need a new bookcase:
So, I had, in my very small room, four bookcases: two tall, 5 shelf, regular bookcases, and two smaller two shelf (plus desk-level top) bookcases. And they are full. They are very full. They are so full that I also have three baskets full of ToBeRead books, a 24 gallon Rubbermaid bucket full of books ToBeTraded (on PaperBackSwap), an old amazon.com box full of books ToBeReviewed, and various piles of other books, on my desktop,, inside my wardrobe, and under the television. In case you were wondering, I like to read.
One of the smaller bookcases was filled with children's books: Books I used to teach/tutor with, books for Youngest Nephew and now his baby sister, and books for me. Because children's books are for EVERYONE, people! (Ahem - Harry Potter is not the only acceptable children's book - surprise! Now stepping off soap-box...) And one day, when I wasn't feeling quite my best (shock!), I was doing more than I should (this many shocks in one post - how will you handle it?!) and I tried to stand up to get something from a pile on the desk, and leaned on the smaller bookcase, and fell into this bookcase. And broke the bookcase into a sad number of pieces. Seriously.
It was just one of those particle board bookcases they sell at Target, the ones you put together yourself? But WOW did it a)hurt, b)crumple like dust, c) make me feel both stupid and gi-nor-mously fat. Incredible amounts of fun, I tell ya.
So, now, all of those books, plus all the books I've gotten since sit in little piles on the floor, because I refuse to pay $110 for a bookcase and I also don't want to buy another Rubbermaid container, because where will I put it once I have my bookcase? But, since it's been a while (like... 5 months?) since I broke the bookcase, and the piles are now getting a bit out of hand (see photos, although, they're usually neater piles, I just wanted to be sure you could see some of the titles, because that's what I'd be looking at)... maybe I should just give in and buy a bucket?
Anyways... glad to be back. Will be posting more often, because I missed being able to talk to y'all here, while I was gone (although my commenting did improve a bit, I must say). Hope everybody is doing well! Love, NTE
Friday, July 13, 2007
Wicked excited
As I get older, the pictures in my head of people at a certain age - say, this is what a 30 yr-old looks like, or that is what a 70 yr-old looks like - have changed. A lot. (And not just because I'm closer to 30 myself.) It's the people around me, my family & friends, who've changed my mind.
Early next week, my paternal grandmother turns 90. 90! The picture in my head of a 90-yr-old does not include the woman who was sweeping her back steps yesterday. Not to mention that she has looked almost exactly the same for at least the past 15 years.
She has some health issues: It's from her that I've gotten my very sensitive skin, and nowadays just about everything seems to aggravate hers. She's got Macular Degeneration that wasn't caught quite as quickly as it could have been, so she's got poor vision in one eye. And a couple of other minor things that just about anybody could have going on with them. She often says that it isn't fair that she should feel better, at 90, than me, at 28. (I don't know about fair, but I'm glad she still feeling so good!)
In honor of the occassion the Mc-side of my family are gathering tomorrow for a big celebration at her house. And when I say 'tomorrow', I mean probably till the beginning of next week.
She knows there's a party (because if people showed up and her house wasn't clean, she would skin us all), she just doesn't know who's coming. Which is mostly because we don't really know who's coming just yet either. Everybody is trying to come, but who knows who will make it. My grandparents had 9 children: two of them, including my father, are deceased. Of the 9, 5 have kids. At least two kids. And some of those kids (like my brother), have kids of their own. So when I say that it's just 'the close family' that's coming... I think you can imagine how many people that will most likely turn out to be.
At last count: 32. With less than half of the contigency accounted for, and an estimated count much closer to 65.
I'm excited because it will be the first time we've (who ever we turns out to be) all been in the same space for about 10 years. I've seen a lot of people, bits and pieces, over the years: A cousin at this party, three uncles who managed to get an overlapping vacation day, a large chunk at one of my other cousin's weddings, etc. But the majority of us together? Not since 1992, when we had a family reunion. My grandfather, father and favorite uncle were all still alive then. Youngest Nephew and Niece, along with all of my cousins' kids, were not. Youngest Sister (who's actually the youngest in our bunch) was 5, and our oldest cousin had just started college: Now he's almost 37, and she'll be starting in September.
Oh, and also? I was not sick. But I'm trying not to focus on that.
My grandmother's house is less than 5 minutes away, if you don't hit the one red light between here and there. I'm glad that I can be so close to her, all the time, and sometimes find myself angry at the parts of the family who've moved away: How can they not want to be here? It's illogical, though to be that way. I know it. And I'm glad that so many of them are making the effort to come all this way.
So the plan for my weekend is to enjoy, relax with my family, and take lots of pictures. What's your plan?
Early next week, my paternal grandmother turns 90. 90! The picture in my head of a 90-yr-old does not include the woman who was sweeping her back steps yesterday. Not to mention that she has looked almost exactly the same for at least the past 15 years.
She has some health issues: It's from her that I've gotten my very sensitive skin, and nowadays just about everything seems to aggravate hers. She's got Macular Degeneration that wasn't caught quite as quickly as it could have been, so she's got poor vision in one eye. And a couple of other minor things that just about anybody could have going on with them. She often says that it isn't fair that she should feel better, at 90, than me, at 28. (I don't know about fair, but I'm glad she still feeling so good!)
In honor of the occassion the Mc-side of my family are gathering tomorrow for a big celebration at her house. And when I say 'tomorrow', I mean probably till the beginning of next week.
She knows there's a party (because if people showed up and her house wasn't clean, she would skin us all), she just doesn't know who's coming. Which is mostly because we don't really know who's coming just yet either. Everybody is trying to come, but who knows who will make it. My grandparents had 9 children: two of them, including my father, are deceased. Of the 9, 5 have kids. At least two kids. And some of those kids (like my brother), have kids of their own. So when I say that it's just 'the close family' that's coming... I think you can imagine how many people that will most likely turn out to be.
At last count: 32. With less than half of the contigency accounted for, and an estimated count much closer to 65.
I'm excited because it will be the first time we've (who ever we turns out to be) all been in the same space for about 10 years. I've seen a lot of people, bits and pieces, over the years: A cousin at this party, three uncles who managed to get an overlapping vacation day, a large chunk at one of my other cousin's weddings, etc. But the majority of us together? Not since 1992, when we had a family reunion. My grandfather, father and favorite uncle were all still alive then. Youngest Nephew and Niece, along with all of my cousins' kids, were not. Youngest Sister (who's actually the youngest in our bunch) was 5, and our oldest cousin had just started college: Now he's almost 37, and she'll be starting in September.
Oh, and also? I was not sick. But I'm trying not to focus on that.
My grandmother's house is less than 5 minutes away, if you don't hit the one red light between here and there. I'm glad that I can be so close to her, all the time, and sometimes find myself angry at the parts of the family who've moved away: How can they not want to be here? It's illogical, though to be that way. I know it. And I'm glad that so many of them are making the effort to come all this way.
So the plan for my weekend is to enjoy, relax with my family, and take lots of pictures. What's your plan?
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