This post over at Beauty Offensive reminded me of a conversation I had to have with Sister J recently. (I'm sorry: I know some of you are still a bit confused about which sister is which and whatnot, but I can't find my taskbar - with the family tree post - yet. I have done something to screw it up. I'm workin' on it. In the meantime, Sister J is 24 yrs old, recently engaged and moved in with her fiance, the sister directly below me in our prestigious line.)
Following the whole "Suck it up" debacle, I had some... intense anger issues. Specifically directed toward my family. And the fact that they were - possibly, at this point - talking, behind my back, about the fact that I was "exaggerating my illness." We've talked about it here, but I think you can all imagine how painful it was for me to think that they were all discussing this amongst themselves.
But I didn't know for sure: All I had was Soon-to-be Sister-In-Law's not so wonderfully rambling e-mail. This was not exactly proof. And I found myself in a peculiar situation:
I wanted to know if it was true; but if it was true, I didn't want to know.
I really spent a while debating with myself because I wasn't sure how I would handle it if they were all thinking I was overstating my realities of living with chronic illness.
I have been sick for 13 years... which means I was a teenager when I first got sick. And - after the initial worry - when my health just kept deteriorating and the doctors had no clue what the hell was going on, many of my family members had a lot of doubts. Whether it was because I was young, or because CFIDS/FM wasn't really known, or because it was so sudden & dramatic, or .. whyever really: there was a lot of disbelief. Some of the things that were said to me, & done to me, & said about me during those first three years or so, were incredibly painful. I was mocked. I was made to do things that were physically impossible (for sick-me), and then punished if I didn't complete them. I was doubted and taunted and picked on. Some family members thought I was a druggie, or pregnant (although how they could keep thinking that 13 months later, I don't exactly know), or hiding something, or faking. Just plain faking.
To be fair, my sibilings - the worst offenders - were thirteen years younger then too - making the oldest two, 18, and the youngest three, 12, 9, and 7. To a 9-yr-old, the idea of an illness doesn't always matter; Not being the center of attention anymore, does.
I already know what it feels like to have to defend your existence to the people who are supposed to love you unconditionally (ha!), and it's horrid. It's difficult and demeaning and so incredibly hurtful. And I didn't want to have to do it again. So, I put it off.
And, I put it off. And I fumed, and pouted, and was generally disagreeable (in my own subtle way). Eventually, though, I knew I had to find out.
Sister J and I were home alone one day, and I decided that she would be my best bet to have this discussion with for three reasons: 1) We've grown a lot closer in recent years & I felt comfortable enough to bring it up; 2)She's honest - to a fault, to the point of rudeness, to the extreme; and 3)I knew I would probably cry, and since she's an easy-crier too, she would still listen to what I was saying.
I started the conversation by skimming over S-T-B S-I-L's e-mail, and what it said, and how I was upset by it. She was also furious, intially, & disbelieving. She was supportive and pissed and all the things only a sister can be when somebody messes with their sister.
But when I asked her if it was true that the family discusses me, and pretty much has come to the conclusion that I'm a big faker, she got kind of quiet.
And I got really angry. And when I get angry, (or upset, or emotional in anyway,) I tend to cry.
So I rolled myself over to the window, let the tears fall silently, and listened to what she had to say.
She said that nobody thought I was faking, but that maybe, sometimes there were doubts about the intensity of certain symptoms, or how long they lasted. Or that sometimes they talked about how I could probably do more than I was doing, or that I was sort of just passively not taking all the steps necessary to get better. Because it's been thirteen years already, and I'm obviously not better (and have in fact gotten worse over the course of the past 7 or so), so there must be more I could be doing, but wasn't.
Which is basically what Soon-to-be Sister-in-law said as well, and to which, I must again reply: Fuck that!
I'm sorry: I don't use language like that often, but there couldn't be a better place. And I literally said it to her that day, in tears, trying not to throw-up.
And then I said that there was no one more aware of the fact that it had been 13 years and I still wasn't better. There also wasn't anyone more aware of the fact that I have been doing every single thing the doctors have told me to do (and a million other things in between)for the past 13 years. And I may have ranted on a bit here about how if they ever asked questions, or came to my doctor's appointments, or did research on their own, they would know that my diseases are CHRONIC and largely untreatable (to date).
I also said that if there were any exaggeration on my part, it would be that I downplay how horribly I really feel in order to make it through the day. Because if I let my body dictate what gets accomplished, then I would not move more than three inches in any direction on any given day. (I may also have sworn some more. But not alot, because I was too busy crying. Which I HATE... that's a whole nother post.)
BUT ---> and here's the part that actually fits in with that Beauty Offensive post <---- then we started to calm down and listen to each other. And she started to cry, too, as she was telling me that basically, it's easier for her (for them) to think that it's somehow my fault: To think that there's something more I could be doing, but just haven't done yet.
Because if they don't think that, then it's true: I really have these horrible diseases, and they aren't getting better. And they aren't going away. And then they have to mourn the sister that they want to have - the sister who can walk down the aisle as maid-of-honor rather than roll down; the sister who isn't stuck living with our parents at 28; the sister who is the world's best auntie and mother; the sister who is happy and healthy and not held back - and deal instead with the sister they really have - who, she insisted, is not a bad person. She's just a sick person, and that's not how they want me to be. (Um... can I give a big fat "DITTO" here?)
And as much as I would have liked to have told her to stuff it, I understood what she was saying. Because I was there too: I had to accept the fact that these diseases are a part of me, and there were/are times when I didn't. So I could understand how it would easier for them to just blame me... because then, I could fix it.
And I told her that. And then I told her this:
"I can't fix it. I can do everything I'm supposed to do, everything there is in the world to do, to get better - that's my responsibility. But I'm still not guaranteed to get better. Because hasn't worked so far. And no amount of positive thinking or pulling myself up by the bootstraps, or voodoo or praying is going work for me. Because I am SICK. And you just can't talk yourself out of SICK.
"I am sick," I told her. "And you are making it harder for me. Because I can't lean on you, I can't depend on you, I can't feel loved and whole and safe with my family, if they don't believe in me.
And that's not fair.
It may be easier for you all to blame me, but it makes it harder on me. It makes me less able to do the things I have to do everyday, because I know that there's no one completely on my side.
I need you on my side. We can both hate this situation, these diseases, my genes, the lack of funding and research: we can sit all day and hate those things together.
But you can't doubt that I am doing everything in my power to get better. You can't think that I'm exaggerating, or milking it, or sitting by passively, because if you believe those things, you aren't paying attention.
You aren't being supportive. You aren't being the family I need. "
And she agreed.
AGREED, people.
So, then we cried some more, and hugged ("Hug it out, Bitches!"), and talked some more. She promised no more smack talk about me being sick (sisters always smack talk about something, it just can't be about that), and that she'd pass on what we talked about, and how she feels about it now.
And it was a hard conversation to have, but I'm glad we had it.
I'm glad I can be sure of her, and that she's sure of me.
Wednesday, June 27, 2007
I'm also awake... at 1:20 in the frickin morning. UGH.
 | You scored as Pam Beesly, You're Pam! Oh, I mean Fancy New Beesly. We're all so proud of you.
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Monday, June 25, 2007
MBSM
Well, despite my hatred for last minute plans, today went from being an empty "I have to tackle that huge pile on my desk" day to being an "Oh great, Niece and Youngest Nephew are on their way and now I have to think of something to do with them (I wonder if they'd like to tackle that huge pile on my desk?)" day somewhere in the space of 5 minutes. So, I'll be around later to check out all the
Best Shot Monday shots over at Picture This.
But here's my shot...
It's Youngest Nephew and his sister, reading at our local library. This was Niece's very first trip to the library, and, since she likes books, she loved it. Books, and puzzles, and other kids? It was like Disney Land! And Youngest Nephew has always been a good reader, too: this trip was all about the states, so we found a bunch of books on our state and other New England states. He's kind of a trivia buff, that one.
Enjoy your Mondays, everybody!
Best Shot Monday shots over at Picture This.
But here's my shot...
It's Youngest Nephew and his sister, reading at our local library. This was Niece's very first trip to the library, and, since she likes books, she loved it. Books, and puzzles, and other kids? It was like Disney Land! And Youngest Nephew has always been a good reader, too: this trip was all about the states, so we found a bunch of books on our state and other New England states. He's kind of a trivia buff, that one.
Enjoy your Mondays, everybody!
Sunday, June 24, 2007
Let's talk a little bit about faith.
Or, let's try, before I go off on some rambling incoherent tangent.
Growing up, I was a good Catholic. I had the Mass memorized by the time I was in 2nd grade, just from hearing it week after week after week. (I never understood why anybody, let alone adults, needed the missilette: He's saying the exact same thing as last week, people!) I won prizes by answering trivia questions from our priest. (All of the questions were, to anybody who paid any amount of attention, ridiculously easy: Who wrote the Gospels? Name some of the people Paul wrote letters to. What does it mean when we make the sign of the cross over our forehead, mouths, and hearts right before the Gospel? I won a bike for that one, thank you very much. The hardest part, for me, was overcoming my shyness enough to raise my hand in the church full of people. I used to whisper the answers to my friends, let them raise their hands. Sometimes they shared the prizes with me - in addition to the bike, there was a turkey, a twenty dollar bill, and some books).
We prayed at home before meals & before bed; I made my first communion; I read at Sunday Masses (this was before girls could serve on the altar); I aced my CCD courses - and eventually taught CCD; I used to march in the May Day processionals and join the Blessed Mother's Rosary (where we would say the rosary as we walked around the outside of the church. In October. In Massachusetts.)
I was a good Catholic. And I believed.
I didn't just say I believed: I really, honest and truly, believed.
I was a normal, mischievous, playful kid, but I believed in God and Jesus, Mary and the Holy Spirit, Heaven & Hell, confession and contrition, the seven sacraments and the deadly sins: the whole bit. The Creed during the Mass was my creed: I believed in it all, at least, what I >understoodof it. (It's the second version on that page, btw.)
I was ashamed when I felt I'd sinned & confused when I had ideas that ran contrary to the teachings of the church. I thought almost everybody was Catholic like me, and felt sad for the few friends I had who weren't, since it meant they wouldn't go to Heaven.
But somewhere along the way, I started to have doubts. Something that didn't add up here, something that just felt wrong to me there. All the hows, all the whys.
In the end, it was as easy as a few unanswerable questions, asked to the priest leading our Confirmation class - questions about infallibility and church policy, questions about suffering and loss, questions about what kind of a God they had sold me on. And when the priest couldn't answer my questions to my satisfaction (and, at 17, it would've taken a lot for him to satisfy me), I had had enough. I was confirmed because it was what one did in my family, but inside I knew I wasn't a good Catholic girl any longer.
Ten years later, my perspective has changed a million times, but I've still never gone back to being a good Catholic. A cafeteria Catholic on my best days, a complete atheist on my worst. Mostly, I fall into the agnostic category: Just plain unsure.
In college I took courses on religion. I studied philosophy and the birth of religious dogma, and came away more confused than ever. Add in all my psychology and the theories on brainwashing and religion as cult, and the scientific explanations of what it means if you're hearing voices, and things kept getting jumbled up.
On my own, I've read about the beginnings of the Catholic church, and its controversies and inconsistencies over the years. I've studied Judaism, Buddhism, Islam, the different Christian sects, and found things in all of that that are to be much admired, things that are to be feared.
But there still has never been just one *answer* for me.
And I long to be little if only to have that belief: that certainty that there was something out there, someone, in charge of us all, making sure we did alright. Tried our best, came out OK in the end.
Because a lot of days, it just doesn't feel like that's true.
So I envy my grandmother who, though she'll be 90 next month, never misses a Sunday or Holy Day Mass. Ever. Who just believes. After all she's seen, all she's lost, all she's done.
Because to have that comfort, that bone-deep belief is a feeling that I wish I could get back. Because I may not go to church on Sundays anymore. I may loathe the influence of a few high placed, highly immoral 'religious' folks in our political system. I may think the Catholic Church will have much to answer for if Judgement Day ever comes. I may roll my eyes when someone says they're praying for me. But I want it to be enough... I want it to be true. I want to feel, when I'm mumbling my Hail Marys, that there's somebody up there listening. Somebody who's on my side.
Growing up, I was a good Catholic. I had the Mass memorized by the time I was in 2nd grade, just from hearing it week after week after week. (I never understood why anybody, let alone adults, needed the missilette: He's saying the exact same thing as last week, people!) I won prizes by answering trivia questions from our priest. (All of the questions were, to anybody who paid any amount of attention, ridiculously easy: Who wrote the Gospels? Name some of the people Paul wrote letters to. What does it mean when we make the sign of the cross over our forehead, mouths, and hearts right before the Gospel? I won a bike for that one, thank you very much. The hardest part, for me, was overcoming my shyness enough to raise my hand in the church full of people. I used to whisper the answers to my friends, let them raise their hands. Sometimes they shared the prizes with me - in addition to the bike, there was a turkey, a twenty dollar bill, and some books).
We prayed at home before meals & before bed; I made my first communion; I read at Sunday Masses (this was before girls could serve on the altar); I aced my CCD courses - and eventually taught CCD; I used to march in the May Day processionals and join the Blessed Mother's Rosary (where we would say the rosary as we walked around the outside of the church. In October. In Massachusetts.)
I was a good Catholic. And I believed.
I didn't just say I believed: I really, honest and truly, believed.
I was a normal, mischievous, playful kid, but I believed in God and Jesus, Mary and the Holy Spirit, Heaven & Hell, confession and contrition, the seven sacraments and the deadly sins: the whole bit. The Creed during the Mass was my creed: I believed in it all, at least, what I >understoodof it. (It's the second version on that page, btw.)
I was ashamed when I felt I'd sinned & confused when I had ideas that ran contrary to the teachings of the church. I thought almost everybody was Catholic like me, and felt sad for the few friends I had who weren't, since it meant they wouldn't go to Heaven.
But somewhere along the way, I started to have doubts. Something that didn't add up here, something that just felt wrong to me there. All the hows, all the whys.
In the end, it was as easy as a few unanswerable questions, asked to the priest leading our Confirmation class - questions about infallibility and church policy, questions about suffering and loss, questions about what kind of a God they had sold me on. And when the priest couldn't answer my questions to my satisfaction (and, at 17, it would've taken a lot for him to satisfy me), I had had enough. I was confirmed because it was what one did in my family, but inside I knew I wasn't a good Catholic girl any longer.
Ten years later, my perspective has changed a million times, but I've still never gone back to being a good Catholic. A cafeteria Catholic on my best days, a complete atheist on my worst. Mostly, I fall into the agnostic category: Just plain unsure.
In college I took courses on religion. I studied philosophy and the birth of religious dogma, and came away more confused than ever. Add in all my psychology and the theories on brainwashing and religion as cult, and the scientific explanations of what it means if you're hearing voices, and things kept getting jumbled up.
On my own, I've read about the beginnings of the Catholic church, and its controversies and inconsistencies over the years. I've studied Judaism, Buddhism, Islam, the different Christian sects, and found things in all of that that are to be much admired, things that are to be feared.
But there still has never been just one *answer* for me.
And I long to be little if only to have that belief: that certainty that there was something out there, someone, in charge of us all, making sure we did alright. Tried our best, came out OK in the end.
Because a lot of days, it just doesn't feel like that's true.
So I envy my grandmother who, though she'll be 90 next month, never misses a Sunday or Holy Day Mass. Ever. Who just believes. After all she's seen, all she's lost, all she's done.
Because to have that comfort, that bone-deep belief is a feeling that I wish I could get back. Because I may not go to church on Sundays anymore. I may loathe the influence of a few high placed, highly immoral 'religious' folks in our political system. I may think the Catholic Church will have much to answer for if Judgement Day ever comes. I may roll my eyes when someone says they're praying for me. But I want it to be enough... I want it to be true. I want to feel, when I'm mumbling my Hail Marys, that there's somebody up there listening. Somebody who's on my side.
Thursday, June 21, 2007
Thursday Theme = Glee
Here's SisterJ experiencing a little glee during our recent wedding dress shopping trip. She did this whole little dance... it was very cute. This isn't the dress she wound up picking, though it was that dress's main competition. The wedding is still a while away - next October - but she's so excited to have one decision made!
(Also, trust me when I say that bridesmaid dress shopping was not nearly as gleeful. I need to lose, oh 125 lbs before next October. That should be easy, right??? Ugh.)
Don't forget to head on over to Picture This for more Theme Thursdays.... http://picturethis.clubmom.com/picture_this/2007/06/thursdays-theme.html
(Also, trust me when I say that bridesmaid dress shopping was not nearly as gleeful. I need to lose, oh 125 lbs before next October. That should be easy, right??? Ugh.)
Don't forget to head on over to Picture This for more Theme Thursdays.... http://picturethis.clubmom.com/picture_this/2007/06/thursdays-theme.html
Wednesday, June 20, 2007
Hello, yes
Hello, Yes: I am still here. I just have very little that is in anyway interesting to talk about.
I could tell you that Youngest Niece is a bit wobbly still, but now races around the house. It was much easier when she liked to sit. But, no, she's got to check out everysingleroom in the house, in case something interesting is going on in there. Even though nothing ever is. But, she is adorable, and she sort-of said my name, so she can wander all she wants. Auntie NTE is a total pushover, in case you didn't guess.
Tomorrow, we have Youngest Niece and Youngest Nephew, who will finally be out of school. (Today's his last day.) Since they moved at the beginning of the school year, I have really, really missed seeing that little boy everyday. And now, he is not so little a boy: he will be a Second Grader in the fall - 2nd GRADE!!!
Anyways, that's about all I have to ramble on about. Am thinking about tomorrow's Thursday Theme post (It's GLEE, in case y'all want to play too...) & also thinking that, before I started hanging out at Picture This, I thought these kind of things were cheesy, but now I love them... I love the variety and quality of the pictures and the whole sharing-vibe thing that happens. I am kind of a dope.
Other than that, I decline to comment on how I'm feeling because I am so sick of talking about myself. This is probably a problem when you have a blog, yes? Particularly when you have a blog, but you rarely leave the house and so you are all you have to talk about?
As an aside, does anybody else see my taskbar/menu thingee up the top there? It seems to have disappeared. Probably back when I added that quote, and I am only now noticing (to be fair, I usually only see the blog in the create post form)... I'll try and fix it soon. I'm thinking about another skin/template, but I love this one, (Miss Zoot rocks!) so I'm still only thinking about it. I thought I'd try it myself, but HA! as far as HTML goes. HA, I say.
Wow, that was some random wandering.... hope your Wednesday is going along at the pace you prefer. Love, NTE
I could tell you that Youngest Niece is a bit wobbly still, but now races around the house. It was much easier when she liked to sit. But, no, she's got to check out everysingleroom in the house, in case something interesting is going on in there. Even though nothing ever is. But, she is adorable, and she sort-of said my name, so she can wander all she wants. Auntie NTE is a total pushover, in case you didn't guess.
Tomorrow, we have Youngest Niece and Youngest Nephew, who will finally be out of school. (Today's his last day.) Since they moved at the beginning of the school year, I have really, really missed seeing that little boy everyday. And now, he is not so little a boy: he will be a Second Grader in the fall - 2nd GRADE!!!
Anyways, that's about all I have to ramble on about. Am thinking about tomorrow's Thursday Theme post (It's GLEE, in case y'all want to play too...) & also thinking that, before I started hanging out at Picture This, I thought these kind of things were cheesy, but now I love them... I love the variety and quality of the pictures and the whole sharing-vibe thing that happens. I am kind of a dope.
Other than that, I decline to comment on how I'm feeling because I am so sick of talking about myself. This is probably a problem when you have a blog, yes? Particularly when you have a blog, but you rarely leave the house and so you are all you have to talk about?
As an aside, does anybody else see my taskbar/menu thingee up the top there? It seems to have disappeared. Probably back when I added that quote, and I am only now noticing (to be fair, I usually only see the blog in the create post form)... I'll try and fix it soon. I'm thinking about another skin/template, but I love this one, (Miss Zoot rocks!) so I'm still only thinking about it. I thought I'd try it myself, but HA! as far as HTML goes. HA, I say.
Wow, that was some random wandering.... hope your Wednesday is going along at the pace you prefer. Love, NTE
Saturday, June 16, 2007
Father's Day
Because I could not complete the long, rambling, confusing post I had thought to write about my relationship with my own fathers (Daddy & my stepDad), I decided instead to do some searching. Here's some of the most interesting Flickr images, quotations and other flotsam about fathers...
"I cannot think of any need in childhood as strong as the need for a father's protection." Sigmond Freud...
Originally uploaded by nascity
Chris Rock: When I was a kid, that's all we had was Robitussin. Whatever you got, Robitussin better handle it. I broke my leg once, daddy poured Robitussin all over it. Chris Rock: Bigger & Blacker
Will Bloom: In telling the story of my father's life, it's impossible to separate fact from fiction, the man from the myth. The best I can do is to tell it the way he told me. It doesn't always make sense and most of it never happened... but that's what kind of story this is. Big Fish
Veruca Salt: Daddy! I want a flying glass elevator! Charlie and the Chocolate Factory
Sidda: Daddy, did you get loved enough? Divine Secrets of the Ya-Ya Sisterhood
Ruth: My daddy always used to say there was a separate god for children.Fried Green Tomatoes
"I cannot think of any need in childhood as strong as the need for a father's protection." Sigmond Freud...
Originally uploaded by nascity
Chris Rock: When I was a kid, that's all we had was Robitussin. Whatever you got, Robitussin better handle it. I broke my leg once, daddy poured Robitussin all over it. Chris Rock: Bigger & Blacker
Will Bloom: In telling the story of my father's life, it's impossible to separate fact from fiction, the man from the myth. The best I can do is to tell it the way he told me. It doesn't always make sense and most of it never happened... but that's what kind of story this is. Big Fish
Veruca Salt: Daddy! I want a flying glass elevator! Charlie and the Chocolate Factory
Sidda: Daddy, did you get loved enough? Divine Secrets of the Ya-Ya Sisterhood
Ruth: My daddy always used to say there was a separate god for children.Fried Green Tomatoes
Thursday, June 14, 2007
Today is Theme Thursday
over at Picture This. And since I'm in need of some cheering up, I decided to play along. The theme for today is Imagine.
Imagine that this little girl -
is now this young woman:
And that this cutie ->
Has grown into this beauty -
Imagine that this Ms. Thang -
has blossomed into this...
And then imagine what this little one, who has stolen all of our hearts, has in front of her:
.JPG)
It takes your breath away.
Imagine that this little girl -
is now this young woman:
And that this cutie ->
Has grown into this beauty -
Imagine that this Ms. Thang -
has blossomed into this...
And then imagine what this little one, who has stolen all of our hearts, has in front of her:
.JPG)
It takes your breath away.
Linkage
Let me point you to Lady Bracknell's recent post, Them. Of particular importance, and exactly on point, is the following:
In other words, "Have you stopped speaking now? Oh good. I couldn't really concentrate on what you were saying because, to be honest, it wasn't actually about me, was it? I'm really much more interesting than your husband could possibly be, and I have really quite dreadful health problems of my own. Which I'd be more than happy to tell you about in minute detail, if you'd like. Oh. Where has she gone? Was it something I said? Funny woman..."
Oh boy, do I know those people.
In other words, "Have you stopped speaking now? Oh good. I couldn't really concentrate on what you were saying because, to be honest, it wasn't actually about me, was it? I'm really much more interesting than your husband could possibly be, and I have really quite dreadful health problems of my own. Which I'd be more than happy to tell you about in minute detail, if you'd like. Oh. Where has she gone? Was it something I said? Funny woman..."
Oh boy, do I know those people.
"Do You Have A Blog?"
As a matter of fact, I do.
I'm (sort of) sorry I lied, but if I told you about it, then you would want to read it. And if you read it, I wouldn't be able to say things like this, or this, or most especially this if you were reading.
It's not that I don't love you and all, it's just that I think I might go crazy if I had no place to say all these things to. And I wouldn't want you to get hurt.
So I lied. And I'd do it again.
--------------------------------------------------
Thank you all so much for the encouraging comments on my last BSM photo: I'm glad you liked it. Since I've started hanging out at Picture This, and since I bought Photoshop and actually read the manual that came with my camera, I'm finding a new love for photography. I've been reading up on it, learning a lot about focus and F stops, and venturing away from the automatic settings of my fabulous digital camera. (Not to mention coveting better cameras with image stabilization - curse my damn shaky hands!) And checking out all of the other postings to Best Shot Monday certainly helps start my week off on the right foot.
----------------------------------------------------
As for the whole "ignoring things doesn't make them better," several family issues have been nearing crisis point for some time.
Big/Only Brother had an 'episode' on Friday, which he claims is totally unrelated to the newly renewed addiction to prescription pain killers. It was either a seizure of some sort, or he was choking, or who knows what... he stopped breathing, lost consciousness, and needed CPR, but immediately came back around, a little dazed.
The doctors think it was most likely caused by a drug interaction (one of his allergy meds with his ADD med), or too high a dose of his ADD meds, or something similar - perhaps he even was choking, they don't know. Of course, at the hospital, he denied using any other drugs, so the doctors didn't have all the facts. The fact that they didn't know about the fact that he was taking Vicodin he bought from India doesn't seem to matter to him. During his transfer to the ER, the EMTs popped his shoulder out of the socket, and although it slid back in on its own, he also tore/strained his rotator cuff. It's quite painful, and now he's being prescribed pain meds, so his 'logic' is that he couldn't possibly stop taking them (the illegal ones).
I know you can see the gaping holes in his logic as well as I do, and I cannot describe the level of frustration I am feeling towards him.
He could have DIED. He wasn't breathing. He could, right now, not even be alive.
I had to see my mother's face when she got that phone call, listen to the panic she tried to keep out of her voice. I had to call my sisters and listen to them fall apart, comfort them and tell them to come to home. I had to not fall apart myself, even though it felt like I might be dying. Instead, I had to support my sisters, my grandmother; I had to watch his baby daughter try to climb up the couch, play with her and smile at her, and think: "Her world could be changing right this minute and there is nothing I can do about it."
I am relieved that he is still alive, but I am so angry at him, I could barely look in his direction. I still couldn't say anything more to him besides: "I love you. I am glad you are still alive." I wanted to shout and scream and shake him, but it wouldn't have gotten me anywhere.
He is out of work for at least this week. He can't drive or care for the kids. He has a bunch of tests all lined up. And if this turns out to be not related to his drug use, I may owe him an apology. But the fact that he has started using them again is all that fits in my brain right now. And I find it hard to believe in a coincidence like that - a drug interaction is likely, but only more so because he was taking unprescribed meds.
My parents went down on Sunday and confronted him. He was angry and edgy and defensive: he was also high as a kite, and foggy with it. The meds they'd given him at the hospital weren't the only ones he was taking, I'm sure. He gave my parents a full bottle of vicodin, and made the appointments that they went down there to get him to make. We'll see just how honest he is with his doctor by this time tomorrow.
He does not think that he needs rehab, or an intervention, or anything: "I quit on my own last time" was his defense. And he was serious.
Considering that "last time" was less than 6 months ago, his track record is not impressing me at all.
I'm disappointed and scared and hurt all over again, and don't know that I can help him if I'm like this. He stole from me. He lied to me (and is lying still: to himself and to us). He doesn't think about how his actions influence other people - not just me, but his children, his partner, his parents, his grandparents: Everyone who cares for him. Those things don't matter to him, or if they do, they don't matter enough.
I had to tell SisterK about it - as the youngest, and since she doesn't live at my house, she's been kind of out of the loop about this, but after Friday, she knew something was up. (She's smart enough for Harvard, people, putting things past her is pretty tough.) We talked a lot about how you could grow up with a father like ours, (our father was an alcoholic, who died 8 years ago,) and not think that your kids would be influenced by it. And not see the impact it would have on the rest of your family. Neither of us gets it, but Big Brother is not pleased with comparisons to Daddy. But to me, he sounds exactly the same: excuses about why his behavior is acceptable/forgivable; making things that aren't about him all about him regardless of the feelings of others; not seeing/not caring how his behavior effects those that love him; weak apologies and semi-promises... that's my father shining through his son. I can see him; I can almost smell his beer soaked breath.
And when I see my brother's son, I can only hope that this twisted legacy stops right where it is. Big Brother could do it, could face his problems and try to fix them, and if he does, there will be no better gift for his son, his daughter, his family. He would be nothing less than a hero.
But first he has to realize that he does have a problem. And I'm afraid, so deathly afraid, of what it will take in order for him to see that.
In addition to that lovely little episode, I'm also in exile once again, as the city has finally decided to dig up & then repave my street. The smell is heinous, so I'm at my grandmother's house, where SisterK and I have been staying up till all hours talking. And SisterK was kind enough to pass along yet another sinus infection, on top of the strep that just won't quit. So I'm sore and exhausted; I miss my own bed, my own pillows (5 pillows just aren't enough); the PUS refuses to dig up the flowering - read: smelly - plants they put underneath my window at home, and Nana refuses to dig up the roots of the PUS and put them out on their asses where they belong; Zack thinks that my liver levels are elevated 'unnecessarily,' as is my temp; SisterJ moved into her condo with her Fiance of the Beautiful Eyes, but SisterCh is moving back in, so it's not as though we have any extra space. It has been such an uneventful week.
Each of those things deserves a post of its own, but you won't get them tonight.
Tonight I am tired. I am sick of pretending and stressing and, as Dr Phil would say, "white knuckling it" through the day. Hopefully, they'll finish with the street tomorrow, and I could go home soon. Hopefully.
Till then, I'll just say that I'm glad I have this place, to spill out the crackled and crumbled contents of my overflowing brain. (Hey! You're my virtual pensieve: "It also relieves the mind when it becomes flooded with information." )
And, because of that, I'm not really sorry that I lied.
I'm (sort of) sorry I lied, but if I told you about it, then you would want to read it. And if you read it, I wouldn't be able to say things like this, or this, or most especially this if you were reading.
It's not that I don't love you and all, it's just that I think I might go crazy if I had no place to say all these things to. And I wouldn't want you to get hurt.
So I lied. And I'd do it again.
--------------------------------------------------
Thank you all so much for the encouraging comments on my last BSM photo: I'm glad you liked it. Since I've started hanging out at Picture This, and since I bought Photoshop and actually read the manual that came with my camera, I'm finding a new love for photography. I've been reading up on it, learning a lot about focus and F stops, and venturing away from the automatic settings of my fabulous digital camera. (Not to mention coveting better cameras with image stabilization - curse my damn shaky hands!) And checking out all of the other postings to Best Shot Monday certainly helps start my week off on the right foot.
----------------------------------------------------
As for the whole "ignoring things doesn't make them better," several family issues have been nearing crisis point for some time.
Big/Only Brother had an 'episode' on Friday, which he claims is totally unrelated to the newly renewed addiction to prescription pain killers. It was either a seizure of some sort, or he was choking, or who knows what... he stopped breathing, lost consciousness, and needed CPR, but immediately came back around, a little dazed.
The doctors think it was most likely caused by a drug interaction (one of his allergy meds with his ADD med), or too high a dose of his ADD meds, or something similar - perhaps he even was choking, they don't know. Of course, at the hospital, he denied using any other drugs, so the doctors didn't have all the facts. The fact that they didn't know about the fact that he was taking Vicodin he bought from India doesn't seem to matter to him. During his transfer to the ER, the EMTs popped his shoulder out of the socket, and although it slid back in on its own, he also tore/strained his rotator cuff. It's quite painful, and now he's being prescribed pain meds, so his 'logic' is that he couldn't possibly stop taking them (the illegal ones).
I know you can see the gaping holes in his logic as well as I do, and I cannot describe the level of frustration I am feeling towards him.
He could have DIED. He wasn't breathing. He could, right now, not even be alive.
I had to see my mother's face when she got that phone call, listen to the panic she tried to keep out of her voice. I had to call my sisters and listen to them fall apart, comfort them and tell them to come to home. I had to not fall apart myself, even though it felt like I might be dying. Instead, I had to support my sisters, my grandmother; I had to watch his baby daughter try to climb up the couch, play with her and smile at her, and think: "Her world could be changing right this minute and there is nothing I can do about it."
I am relieved that he is still alive, but I am so angry at him, I could barely look in his direction. I still couldn't say anything more to him besides: "I love you. I am glad you are still alive." I wanted to shout and scream and shake him, but it wouldn't have gotten me anywhere.
He is out of work for at least this week. He can't drive or care for the kids. He has a bunch of tests all lined up. And if this turns out to be not related to his drug use, I may owe him an apology. But the fact that he has started using them again is all that fits in my brain right now. And I find it hard to believe in a coincidence like that - a drug interaction is likely, but only more so because he was taking unprescribed meds.
My parents went down on Sunday and confronted him. He was angry and edgy and defensive: he was also high as a kite, and foggy with it. The meds they'd given him at the hospital weren't the only ones he was taking, I'm sure. He gave my parents a full bottle of vicodin, and made the appointments that they went down there to get him to make. We'll see just how honest he is with his doctor by this time tomorrow.
He does not think that he needs rehab, or an intervention, or anything: "I quit on my own last time" was his defense. And he was serious.
Considering that "last time" was less than 6 months ago, his track record is not impressing me at all.
I'm disappointed and scared and hurt all over again, and don't know that I can help him if I'm like this. He stole from me. He lied to me (and is lying still: to himself and to us). He doesn't think about how his actions influence other people - not just me, but his children, his partner, his parents, his grandparents: Everyone who cares for him. Those things don't matter to him, or if they do, they don't matter enough.
I had to tell SisterK about it - as the youngest, and since she doesn't live at my house, she's been kind of out of the loop about this, but after Friday, she knew something was up. (She's smart enough for Harvard, people, putting things past her is pretty tough.) We talked a lot about how you could grow up with a father like ours, (our father was an alcoholic, who died 8 years ago,) and not think that your kids would be influenced by it. And not see the impact it would have on the rest of your family. Neither of us gets it, but Big Brother is not pleased with comparisons to Daddy. But to me, he sounds exactly the same: excuses about why his behavior is acceptable/forgivable; making things that aren't about him all about him regardless of the feelings of others; not seeing/not caring how his behavior effects those that love him; weak apologies and semi-promises... that's my father shining through his son. I can see him; I can almost smell his beer soaked breath.
And when I see my brother's son, I can only hope that this twisted legacy stops right where it is. Big Brother could do it, could face his problems and try to fix them, and if he does, there will be no better gift for his son, his daughter, his family. He would be nothing less than a hero.
But first he has to realize that he does have a problem. And I'm afraid, so deathly afraid, of what it will take in order for him to see that.
In addition to that lovely little episode, I'm also in exile once again, as the city has finally decided to dig up & then repave my street. The smell is heinous, so I'm at my grandmother's house, where SisterK and I have been staying up till all hours talking. And SisterK was kind enough to pass along yet another sinus infection, on top of the strep that just won't quit. So I'm sore and exhausted; I miss my own bed, my own pillows (5 pillows just aren't enough); the PUS refuses to dig up the flowering - read: smelly - plants they put underneath my window at home, and Nana refuses to dig up the roots of the PUS and put them out on their asses where they belong; Zack thinks that my liver levels are elevated 'unnecessarily,' as is my temp; SisterJ moved into her condo with her Fiance of the Beautiful Eyes, but SisterCh is moving back in, so it's not as though we have any extra space. It has been such an uneventful week.
Each of those things deserves a post of its own, but you won't get them tonight.
Tonight I am tired. I am sick of pretending and stressing and, as Dr Phil would say, "white knuckling it" through the day. Hopefully, they'll finish with the street tomorrow, and I could go home soon. Hopefully.
Till then, I'll just say that I'm glad I have this place, to spill out the crackled and crumbled contents of my overflowing brain. (Hey! You're my virtual pensieve: "It also relieves the mind when it becomes flooded with information." )
And, because of that, I'm not really sorry that I lied.
Monday, June 11, 2007
SisterM & Nana: Coolin' Down
Here's My Best Shot Monday shot, a little refreshment/diversion, in the form of slush. As if there were a better hot weather treat. Don't ask me why my sister has ridiculously high socks on: I couldn't tell you. Also I promised my grandmother that her hair looked ok, which may have been a tiny fib, but what are you gonna do?
Head on over to Tracey at Picture This to check out some more great pictures. And stop by later for my fabulous post, "What do you mean ignoring things isn't making them disappear? What if I do it really studiously????".
Head on over to Tracey at Picture This to check out some more great pictures. And stop by later for my fabulous post, "What do you mean ignoring things isn't making them disappear? What if I do it really studiously????".
Saturday, June 09, 2007
Words we could use more (part 1)
Because I have definite ideas about what people should not be saying anymore, I thought I'd also lend my support to a word that I feel is not used enough these days.
Minx.
As an avid reader (OK, perhaps that's not exactly the right word, but I can't think of anything besides 'rabid' that would be a better description, and I don't like that adjective when it's applied to me), I know that minx was apparently a wonderful, tongue in cheek compliment to ladies of the Ton in Regency Era England. It was flirtatious and endearing. I know this because Harlequin never lies. It is gospel truth, my friends. GOSPEL. (And the more 'modern' definitions that can be better defined by the word 'skank?' Well, those are just ridiculous.)
Ahem.
Either way, I'm just saying... minx could be used more. I think it should make a comeback.
Minx.
As an avid reader (OK, perhaps that's not exactly the right word, but I can't think of anything besides 'rabid' that would be a better description, and I don't like that adjective when it's applied to me), I know that minx was apparently a wonderful, tongue in cheek compliment to ladies of the Ton in Regency Era England. It was flirtatious and endearing. I know this because Harlequin never lies. It is gospel truth, my friends. GOSPEL. (And the more 'modern' definitions that can be better defined by the word 'skank?' Well, those are just ridiculous.)
Ahem.
Either way, I'm just saying... minx could be used more. I think it should make a comeback.
Wednesday, June 06, 2007
Well, the weekend..
was the weekend, and here we are, already at mid-week. The shower itself was great - got to see cousins I haven't seen in a long time and check-in with the mommy-to-be - the hotel stay, and long drive, not so much. Also, my siblings are pissing me off, each in their own special ways. So. Ahem.
I spent Monday and all day yesterday in a Fortress of Solitude (my very dark room, doors closed, staring at the blank white walls or with the eye mask on), because the whole thing was just too much. Too much movement, too much visually, too many smells, too much noise: just too much. So peace and quiet reigned, and the world moved on without me.
I missed Youngest Sister's graduation (which was outside, so it wasn't as if I could've gone anyways), but reconnected with the world in time for a small get-together afterwards. There was cake. And we laughed. This is good.
Also, it was my birthday. And I mostly forgot it was, until I came out of my stupor. There is no place for rational thought, let alone knowing the date, in the Fortress of Solitude.
Most of my siblings remembered, which was nice (even if I am still pissed at them). I was going to do dinner or something this weekend, but - once again - they're threatening to actually start tearing up the street this week, which means I'll be exiled again. And post-exile me is not usually fit for company. So, we'll see.
I'm 28 now, and it feels no different than any of the other numbers I've been lately. I've come to realize it probably never will -> Mentally, the number really stops mattering after about 16: it's not so exciting after that. Also, when you feel like you're 98 instead of 28, physically, it's very disconcerting.
But I don't really mind or fear my birthdays, like some: When Older Sister turned 30 last year, she cried. I don't see much sense in that... It's something to celebrate, the fact that I've made it another year; no matter that I had to drag myself the whole way. I'm still here, so I've got that going for me.
Wow, that's a bit of birthday cheer, huh?
No, really. I'm doing better today (aside from the fact that I haven't slept...), and my brain has plugged back in. And then I 'raced' right back here...
All weekend long, I kept saying "wait until I tell the blog about this!" Although I am still less legible than I would like to be, when relating these stories, I am glad to be back.
Thank you for the birthday wishes, btw, those of you who already knew. They were nice to come back to.
How bout y'all: anything interesting happen on your weekends?
I spent Monday and all day yesterday in a Fortress of Solitude (my very dark room, doors closed, staring at the blank white walls or with the eye mask on), because the whole thing was just too much. Too much movement, too much visually, too many smells, too much noise: just too much. So peace and quiet reigned, and the world moved on without me.
I missed Youngest Sister's graduation (which was outside, so it wasn't as if I could've gone anyways), but reconnected with the world in time for a small get-together afterwards. There was cake. And we laughed. This is good.
Also, it was my birthday. And I mostly forgot it was, until I came out of my stupor. There is no place for rational thought, let alone knowing the date, in the Fortress of Solitude.
Most of my siblings remembered, which was nice (even if I am still pissed at them). I was going to do dinner or something this weekend, but - once again - they're threatening to actually start tearing up the street this week, which means I'll be exiled again. And post-exile me is not usually fit for company. So, we'll see.
I'm 28 now, and it feels no different than any of the other numbers I've been lately. I've come to realize it probably never will -> Mentally, the number really stops mattering after about 16: it's not so exciting after that. Also, when you feel like you're 98 instead of 28, physically, it's very disconcerting.
But I don't really mind or fear my birthdays, like some: When Older Sister turned 30 last year, she cried. I don't see much sense in that... It's something to celebrate, the fact that I've made it another year; no matter that I had to drag myself the whole way. I'm still here, so I've got that going for me.
Wow, that's a bit of birthday cheer, huh?
No, really. I'm doing better today (aside from the fact that I haven't slept...), and my brain has plugged back in. And then I 'raced' right back here...
All weekend long, I kept saying "wait until I tell the blog about this!" Although I am still less legible than I would like to be, when relating these stories, I am glad to be back.
Thank you for the birthday wishes, btw, those of you who already knew. They were nice to come back to.
How bout y'all: anything interesting happen on your weekends?
Thursday, May 31, 2007
Things I really wish I would never have to hear any doctor, ever, say again:
"Wow, that's impressive."
"I've been a doctor for X-number of years, and that's definitely the worst I've ever seen."
Neither of these things are particularly helpful &/or reassuring.
But it this case, it's just my mutant tonsils acting out again: the left one managing to balloon up to three times its normal size and meet the right one over on its side, past my uvula (aka 'the hanging throat ball,' which is what my sister decided to call it. In public).
Which, as you can imagine, led to some breathing difficulties. And swallowing difficulties. And, you know, talking difficulties.
And after a quick call to the doctor, and a trip to the Acute Care, I got myself plugged into an IV, onto some steriods, fluids, & mega-antibiotics & now (finally) I'm home again, home again, jiggity jog.
And feeling much better. Breathing on my own & swallowing things like soup - with a mushy cracker, thank you very much - and ice cream. And my left tonsil has finally decided that it sort of likes its original position, and is heading home to claim it. They're pretty sure it was just the strep (which I get, like my sinus infections, with stunning regularity), but have no idea why my tonsil(s) decided to revolt so badly this time. Also, they yelled at me for not coming in on Monday, when it first migrated, and instead waiting till I knew my doc would be there on Tuesday.
Ok, it might have been a little tiny bit dumb, but I was still breathing and all! I just don't like to have to explain how ... well... everysinglething about my medical history. Especially when I couldn't really talk! Besides, Zack had me in there within the hour, and hooked up less than 20 minutes after he saw me.
So, it's all good.
And it better get better, because I plan on actually LEAVING the house on Saturday, for a drive up to Maine for my cousin's baby shower. They told me, contagious-ness wise, I'd be OK; but the steriods (as we've talked about before) really screw with the FM, and I am not enjoying that particular side effect. It's only an overnight trip (in a hotel!), but honestly - I need this.
I have not left my house (except for emergency evacuations to my Grandmother's house,) overnight in at least 3 years.
And the last time I took so much as a long weekend, it was for this same cousin's wedding, in Maine, 5 years ago.
5 years ago; two nights, three days. That is sad and pathetic.
I'd love a vacation, but unfortunately, all of my problems just come with me (and screw things up there too!) Plus, my family is coming, and it's just overnight, but I DON'T CARE.
Because this weekend, I am going to a baby shower. Because this baby has been quite a few years (and lots of issues) in the making. Because I love this cousin so much. And because y'all know there's nothing I like better than babies.
So I'm going... mutant tonsil or no.
(Stamps feet and walks (well, rolls) away.)
"Wow, that's impressive."
"I've been a doctor for X-number of years, and that's definitely the worst I've ever seen."
Neither of these things are particularly helpful &/or reassuring.
But it this case, it's just my mutant tonsils acting out again: the left one managing to balloon up to three times its normal size and meet the right one over on its side, past my uvula (aka 'the hanging throat ball,' which is what my sister decided to call it. In public).
Which, as you can imagine, led to some breathing difficulties. And swallowing difficulties. And, you know, talking difficulties.
And after a quick call to the doctor, and a trip to the Acute Care, I got myself plugged into an IV, onto some steriods, fluids, & mega-antibiotics & now (finally) I'm home again, home again, jiggity jog.
And feeling much better. Breathing on my own & swallowing things like soup - with a mushy cracker, thank you very much - and ice cream. And my left tonsil has finally decided that it sort of likes its original position, and is heading home to claim it. They're pretty sure it was just the strep (which I get, like my sinus infections, with stunning regularity), but have no idea why my tonsil(s) decided to revolt so badly this time. Also, they yelled at me for not coming in on Monday, when it first migrated, and instead waiting till I knew my doc would be there on Tuesday.
Ok, it might have been a little tiny bit dumb, but I was still breathing and all! I just don't like to have to explain how ... well... everysinglething about my medical history. Especially when I couldn't really talk! Besides, Zack had me in there within the hour, and hooked up less than 20 minutes after he saw me.
So, it's all good.
And it better get better, because I plan on actually LEAVING the house on Saturday, for a drive up to Maine for my cousin's baby shower. They told me, contagious-ness wise, I'd be OK; but the steriods (as we've talked about before) really screw with the FM, and I am not enjoying that particular side effect. It's only an overnight trip (in a hotel!), but honestly - I need this.
I have not left my house (except for emergency evacuations to my Grandmother's house,) overnight in at least 3 years.
And the last time I took so much as a long weekend, it was for this same cousin's wedding, in Maine, 5 years ago.
5 years ago; two nights, three days. That is sad and pathetic.
I'd love a vacation, but unfortunately, all of my problems just come with me (and screw things up there too!) Plus, my family is coming, and it's just overnight, but I DON'T CARE.
Because this weekend, I am going to a baby shower. Because this baby has been quite a few years (and lots of issues) in the making. Because I love this cousin so much. And because y'all know there's nothing I like better than babies.
So I'm going... mutant tonsil or no.
(Stamps feet and walks (well, rolls) away.)
Monday, May 28, 2007
Why haven't you fixed the A/C?
Tracey's at it again, with a particularly un-graceful My Best Shot Monday. Head over to http://picturethis.clubmom.com/picture_this/2007/05/bsm_comic_relie.html to check it out. As for this picture, Youngest/Only Niece is usually the happiest of babies, but after trying unsuccessfully to nap in the close to 100 degree heat of our A/C-less car last week, she was less than pleased with me. And taking her picture was NOT acceptable either. I know I said it last week, but this girl looks even more like her father and big brother when she's pissed (and what does that say, that I recognize Youngest Nephew & Only Brother's "I am MAD!!!" face better than any of their other expressions...?)
Don't forget to check out MBSM!
Don't forget to check out MBSM!
Thursday, May 24, 2007
“To try to be better is to be better.” Charlotte Cushman
Thanks so much for all of your comments on my last post...
Linda - The PUS does suck (but my head will explode if I try to talk reasonably about them right now).
Also sucking? Insomnia... I'm totally feeling you jannie! (Current time: 12:57 am.. ugh!)
Janice - I totally could have used some jokes... Zack is awesome, and manages to say most of the right things, but there were a couple of times when...(well, you'll see)
Hugs right back at you - I'm so sorry I missed your call!
-----------------------------------------------------------------------------------
This week's dr's appointment was a big disappointment to me: mostly a huge waste of time. (Although I am sporting a pretty spectacular bruise as a result of a new, substitute - read: not gentle - blood technician... Wanna see? ) Unlike most appointments with Zack, this one took about an hour. He poked my back (but very gently). We talked about my symptoms and any changes and all that crap.
And then he sat back and said:
"Well, we have some choices to make here. Again. And they are not easy choices. So here's what I need to know from you: Do you need a break?"
And in the minute or two before I answered him, I thought about it. I really, really thought about it. I thought about not having to go to the doctor every other week. I thought about all the times I have to go for these frightening or painful tests. I thought about all the different doctors I have explained myself to over the past year. The past three years. The past 12 and 1/2 years. And I thought about how great it would be to not have to explain it again.
I don't want to keep doing this, honestly. Most of the time I feel like I am fighting for nothing. I'm sick of hearing doctors say things like "Well we just don't know enough about this disease" and "the research is starting now... there are people out there who are working on this... they're just not there yet." I want them to be "there." I want to be through with all the hospital trips and the 27 vials of blood draws and the fricking questions with no answers. I WANT ANSWERS!!!!
But here's the thing:
Taking a break from all the tests and questions and doctors is one thing ---> but I just don't have the option of taking a break from my illness. And as hard as it is to do this every, single day, part of the reason I can keep going is because I know I am doing all that I can. Everything in my power is being done. Every ounce of spare energy I have is dedicated to feeling better. Not necessarily finding a cure (which I would DEFINITELY accept), or even figuring out with 100% clarity what the hell is wrong with me: I just want to be better.
So if that means I have to tell yet another intern why I won't stand up for their examination; Or if I have to lay in yet another tube, battling the urge to pray for them to just find. something. ANYTHING that they know what comes next with; Or if I have to keep setting aside that energy that I could be using to call my college roommate back or take my nephew to the movies for yet another specialist visit, then I am willing - for now - to keep doing all those things. And a million more things. Because there's got to be a better for me. There has to be.
So I told Zack that, while I certainly appreciated the option - and left it on the table for later, should I need it - that we needed to keep pushing. We need to keep going.
And we talked a bit about what comes next - Specialist X and Metabolic Clinic Y, and I thought about how nice it would be if I never had to meet another doctor in my whole entire life - but instead, I agreed to come back in two weeks, after these latest blood tests, so that we could take our next steps. Physically, the appointment was nothing more than a bit of extra stress, fatigue and pain: but psychically --> it was a toughie.
:big sigh: We keep plugging. Till we find better.
Here's the beautiful mark from the substitute nurse (Ms. "Oh my gosh, you have such bad veins! And the blood won't flow!")... Just FYI: You aren't supposed to wiggle the needle around and make my arm swell up: bring back my regular blood tech! This was it last night, less than 5 hours from when she took it. Today it's even prettier, (twice the size! better colors - more purple!) but my camera battery died (again - which is a whole 'nother rant....) so this is all I've got.
Linda - The PUS does suck (but my head will explode if I try to talk reasonably about them right now).
Also sucking? Insomnia... I'm totally feeling you jannie! (Current time: 12:57 am.. ugh!)
Janice - I totally could have used some jokes... Zack is awesome, and manages to say most of the right things, but there were a couple of times when...(well, you'll see)
Hugs right back at you - I'm so sorry I missed your call!
-----------------------------------------------------------------------------------
This week's dr's appointment was a big disappointment to me: mostly a huge waste of time. (Although I am sporting a pretty spectacular bruise as a result of a new, substitute - read: not gentle - blood technician... Wanna see? ) Unlike most appointments with Zack, this one took about an hour. He poked my back (but very gently). We talked about my symptoms and any changes and all that crap.
And then he sat back and said:
"Well, we have some choices to make here. Again. And they are not easy choices. So here's what I need to know from you: Do you need a break?"
And in the minute or two before I answered him, I thought about it. I really, really thought about it. I thought about not having to go to the doctor every other week. I thought about all the times I have to go for these frightening or painful tests. I thought about all the different doctors I have explained myself to over the past year. The past three years. The past 12 and 1/2 years. And I thought about how great it would be to not have to explain it again.
I don't want to keep doing this, honestly. Most of the time I feel like I am fighting for nothing. I'm sick of hearing doctors say things like "Well we just don't know enough about this disease" and "the research is starting now... there are people out there who are working on this... they're just not there yet." I want them to be "there." I want to be through with all the hospital trips and the 27 vials of blood draws and the fricking questions with no answers. I WANT ANSWERS!!!!
But here's the thing:
Taking a break from all the tests and questions and doctors is one thing ---> but I just don't have the option of taking a break from my illness. And as hard as it is to do this every, single day, part of the reason I can keep going is because I know I am doing all that I can. Everything in my power is being done. Every ounce of spare energy I have is dedicated to feeling better. Not necessarily finding a cure (which I would DEFINITELY accept), or even figuring out with 100% clarity what the hell is wrong with me: I just want to be better.
So if that means I have to tell yet another intern why I won't stand up for their examination; Or if I have to lay in yet another tube, battling the urge to pray for them to just find. something. ANYTHING that they know what comes next with; Or if I have to keep setting aside that energy that I could be using to call my college roommate back or take my nephew to the movies for yet another specialist visit, then I am willing - for now - to keep doing all those things. And a million more things. Because there's got to be a better for me. There has to be.
So I told Zack that, while I certainly appreciated the option - and left it on the table for later, should I need it - that we needed to keep pushing. We need to keep going.
And we talked a bit about what comes next - Specialist X and Metabolic Clinic Y, and I thought about how nice it would be if I never had to meet another doctor in my whole entire life - but instead, I agreed to come back in two weeks, after these latest blood tests, so that we could take our next steps. Physically, the appointment was nothing more than a bit of extra stress, fatigue and pain: but psychically --> it was a toughie.
:big sigh: We keep plugging. Till we find better.
Here's the beautiful mark from the substitute nurse (Ms. "Oh my gosh, you have such bad veins! And the blood won't flow!")... Just FYI: You aren't supposed to wiggle the needle around and make my arm swell up: bring back my regular blood tech! This was it last night, less than 5 hours from when she took it. Today it's even prettier, (twice the size! better colors - more purple!) but my camera battery died (again - which is a whole 'nother rant....) so this is all I've got.
Tuesday, May 22, 2007
In which I find...
I find, this week, that I am more than a bit exhausted, and I don't want to deal with anything or anybody.
I find that I have been taking some things for granted.
I find that the PUS is doing their best to make our lives miserable, and ...
too often, I find that we are letting them.
I find that getting upset at night isn't really helpful with the whole CFIDS-insomnia thing.
I find that the more I want to say here, just lately, the less able I am to say it coherently.
I find out that hoping can be dangerous; again.
I find myself totally apathetic about tomorrow's doctor's appointment, because I am too tired to even think clearly, let alone hope to make sense while I'm there.
I find that midnight is a terrible time to be writing, when you are feeling this poorly.
I find that I have been taking some things for granted.
I find that the PUS is doing their best to make our lives miserable, and ...
too often, I find that we are letting them.
I find that getting upset at night isn't really helpful with the whole CFIDS-insomnia thing.
I find that the more I want to say here, just lately, the less able I am to say it coherently.
I find out that hoping can be dangerous; again.
I find myself totally apathetic about tomorrow's doctor's appointment, because I am too tired to even think clearly, let alone hope to make sense while I'm there.
I find that midnight is a terrible time to be writing, when you are feeling this poorly.
Monday, May 21, 2007
Connections
Tracey was talking about connections today, and this is the shot I thought of. A reflection of Baby Girl in her daddy's picture. I think it could use some photoshopping, eventually (it's a little grainy). But I was so proud to get this shot... it's not like she stays still for very long, you know. Don't forget to visit Tracey (who's post is amazing) and other My Best Shot Mondays!
Friday, May 18, 2007
Things I think people should stop saying (pt 1)
I'm going to go ahead and declare a moratorium on the phrase "... the last, great hurdle we have to overcome." Because, too often, people are only seeing the hurdle they are involved in, and don't look over to the other lanes, where there's hurdles aplenty left. Racism, sexism, ableism, homophobia, antisemitism - unfortunately, none of these is the last problem our society has left to conquer. Sure, there's a lot of crossover, and a win in one column can often add points to all the others, but I have to say that I just don't see us solving all of our society's ills anytime soon.
So let's accept the fact that we've all got a lot of work to do, and stop pretending that our one particular fight is the only fight left to fight.
So let's accept the fact that we've all got a lot of work to do, and stop pretending that our one particular fight is the only fight left to fight.
Thursday, May 17, 2007
5 questions
Maya's Granny asked me my interview questions for this meme, but I've been a bit slow in answering. Here's what I came up with --->
1. If you could choose a super power for a day, what would it be and how would you use it? Super power for a day, huh? Well, did y'all catch this week's Heroes, where Linderman went around healing people? I might like that. Get together with whoever could fly and scoot around the world healing all the ills that need fixing. Yeah, that'd be cool.
2. What is the most important thing you look for in a friend? Humor. Compassion and understanding. Ability to listen, not just talk. Honesty. Kindness.
3. When you think about yourself, what one thing do you hope other people notice about you? Wow... this was a bit harder for me to figure out than at first glance (I guess I spend too much time thinking about the things I hope people don't notice). But I'd hope they would come away from a discussion or first meeting with me thinking that I'd listened to them, that I'd cared enough to pay attention.
4. If you replaced your entire wardrobe tomorrow, what are the colors that you would build the new one on? I am soo not good at fashion type stuff, so... whatever colors my younger sisters would suggest. (Because, honestly, they are always right about this kind of thing.)
5. What is your favorite thing that you feel silly about liking? I sometimes feel silliest for liking - & continuing to watch/listen to - children's movies & music. I'm not talking the "Wheels on the bus," but if you were to flip through my Media Player, you'd find quite a share of Disney music. Of which I would know all the words to. And I have, at certain points, used my younger sisters, and eventually my nephews as my cover... "Oh, she wanted to watch this, and I was already in here..." type thing. My love for the Muppets is unabashed, but if you also sometimes sneak in the Gummi Bears theme song, it can make you feel a bit silly.
I absolutely would love to ask questions, if anybody would like to be interviewed. Thanks again to Maya's Granny for her excellent questions!
Here are the rules, if you would like to be interviewed:
1. Leave me a comment saying, “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions
1. If you could choose a super power for a day, what would it be and how would you use it? Super power for a day, huh? Well, did y'all catch this week's Heroes, where Linderman went around healing people? I might like that. Get together with whoever could fly and scoot around the world healing all the ills that need fixing. Yeah, that'd be cool.
2. What is the most important thing you look for in a friend? Humor. Compassion and understanding. Ability to listen, not just talk. Honesty. Kindness.
3. When you think about yourself, what one thing do you hope other people notice about you? Wow... this was a bit harder for me to figure out than at first glance (I guess I spend too much time thinking about the things I hope people don't notice). But I'd hope they would come away from a discussion or first meeting with me thinking that I'd listened to them, that I'd cared enough to pay attention.
4. If you replaced your entire wardrobe tomorrow, what are the colors that you would build the new one on? I am soo not good at fashion type stuff, so... whatever colors my younger sisters would suggest. (Because, honestly, they are always right about this kind of thing.)
5. What is your favorite thing that you feel silly about liking? I sometimes feel silliest for liking - & continuing to watch/listen to - children's movies & music. I'm not talking the "Wheels on the bus," but if you were to flip through my Media Player, you'd find quite a share of Disney music. Of which I would know all the words to. And I have, at certain points, used my younger sisters, and eventually my nephews as my cover... "Oh, she wanted to watch this, and I was already in here..." type thing. My love for the Muppets is unabashed, but if you also sometimes sneak in the Gummi Bears theme song, it can make you feel a bit silly.
I absolutely would love to ask questions, if anybody would like to be interviewed. Thanks again to Maya's Granny for her excellent questions!
Here are the rules, if you would like to be interviewed:
1. Leave me a comment saying, “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions
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