Sitting around waiting for inspiration ain't really accomplishing much for me ~

It's been a long, long week.. everyday a new & surprisingly bad revelation, and for me - who was already worn out from this fantastic flare - it has been pretty hard just to drag myself through. Here's some of the highlights -

On Monday, Sister Ch developed a rash at work (again... this is like the 4th time in a row). Only this time, it was severe enough to get her to go to the ER... where she waited 4 hours to be told that she has some sort allergy. They gave her the name of an allergist and an Epi-pen. Of course, since she has no idea of what she's allergic to, it should be interesting to see how that works out.

On Tuesday, we discovered little bugs in our kitchen. They are not ants. They are not roaches, they are some sort of little beetle or something... and they like our windowsills. Oh, and also the cabinets.

On Wednesday, some of my Nana's test results came back and the news is not good. We don't know how not good yet, so I'm trying not to think of it just now... She's got an MRI scheduled for tomorrow morning, and then she's got to see an ENT for a biopsy.

Yesterday, there was no bad news. And we had Lil Girl, which was great. And she said SisterCh's name, which was adorable. And I breathed and took a shower, and waited for the doctor to call. He didn't, but that was O.K. cuz I didn't really want to talk to him.

And today? Well today was supposed to be a nice relaxing day for Mum & I, b/c Dad's on vacation starting tomorrow and 'vacation' for him in reality means 'more opportunities for driving us crazy.' Like making homemade raviolis, which he wants to do, you know... for Thanksgiving. (????) But instead of that, my Mum got a call from Nana saying my aunt had passed out at work and was on her way to the ER in an ambulance. My aunt has been sick for a while now, but - because she refuses to go to the doctor - nobody knows what's wrong with her. She just lost a lot of weight (and she had little to spare to begin with), her skin got all crepe-y and off colored, and she had trouble eating. Turns out she pulled a little me - the whole low-blood pressure = syncope number - and hit her head on the way down. (Boy, that hurts, let me tell you.) A few stitches, nothing big. But now that they've got her, they're trying to figure out the why of it: she's anemic and severely dehydrated, and, when my Mum finally came home right about 8 hours after she left, she told me they were thinking there was a problem with her liver.
(This is where I mention that alcoholism runs in both sides of my family - largely unacknowledged, btw. She wasn't drinking this morning, certainly, but I doubt that her drinking isn't in someway connected to her problems.) But she was awake, alert and cranky by the end of the day.

So - little annoyances, bigger issues, health worries right and left, a not-so-major flare, and Thanksgiving looming... it was, in fact, a particularly un-fabulous week. I'm pretending that a new week starts tomorrow, on Saturday. Because I need it to. Youngest Nephew is coming for his regularly scheduled sleepover, and I'm determined to have a better day.

I hope you all are having nice, normal, calm, peaceful weeks. Get ready to think of all the things you are thankful for: they've been uppermost in my mind just lately, I'll tell you that.

I'm definitely not GIDDY,

but today's Thursday Theme is. So I searched through some of my photo archives, and came up with some pictures of giddiness. Here's the one that made me smile the most.

It's Youngest Nephew, his mum (Soon-to-be SIL), SisterCh & our Mum, New Years 2005...



They've just finished a puzzle. Seriously, who can get that excited about a puzzle? I do not like puzzles. At all... it's a huuuge waste of time to me. To each his own, I guess.. and seeing as how it was Mum's birthday - and puzzles are in her list of favorite things to do, it was nice that she found some people to play with her.

Ok, in addition to being Elinor Dashwood,

I am also a big fat liar. Totally not coming back with anything resembling a fabulous post today.

Unless you think that quizzes I've saved as drafts count as fabulous... in which case, are YOU in luck!!

Thanksgiving Horoscope for Gemini

You're the sign most likely to bring up interesting and controversial topics at Thanksgiving dinner. Your signature dish: Sweet potatoes with marshmallows Your signature dessert: Pumpkin cheesecake This holiday: Play bartender. You're family is much more lively with a few drinks in them.

What's Your Thanksgiving Horoscope?

And if, by "much more lively" they mean "totally crackhouse crazy," then this horoscope is right on target.

Take the Quiz here!

Hiding from the flare, in good old Regency England. (Not with Ms. Austen, although I did reread P&P recently, but rather Ms. Quinn, Ms. Kleypas, & Ms. Laurens.) Back again tomorrow, in hopefully a more pleasant manner.

MBSM

Here's the newest member of our clan - Baby O, at 3 months old.

His parents, my cousin and her husband, trekked down from Maine to introduce us to their new guy. It was great to see them all, particularly since Baby O was a long time, and quite a few troubles, in coming. We're all so happy, and it was just one of those things that fills your heart: Seeing Baby O with his doting Daddy and head-over-heels Mommy. It's nice to see happiness where there was so much pain.

Plus, I am uncontested Queen of the Baby Hogs, and Baby O had no issues with that at all. (Although Lil Girl was more than a little put out at first... she handled it pretty well, though.) ;)

So here's the cutie, My Best Shot Monday, and totally worth the little flare I'm dealing with today.

Present time....

See yesterday's post Re: The 1st party of the Clump, and you will see that I am pretty exhausted, so here's a look at SisterK's birthday present. A year ago, I decided to do scrapbooks for all of my siblings, and each year on their birthdays, I add a year's worth of pages. I enjoy doing them (even though they are a lot of work), and so far, my siblings have all really loved them. Of course, I have a ton of work to do for SisterS and Only Brother over the course of the next month, but I'm not thinking about that now. Instead, here are a few of the pages I added to Sister K's book this year:

And so it begins...

Yesterday was Youngest Sister/Sister K's 19th birthday, which ushers in our season o'birthdays. Or, as I like to call it, The Clump. Oldest Nephew really starts things off in the end of September, but then things really start to roll, and birthdays start coming fast and quick all the way through to the first week of February. Here's a brief rundown of the birthdays just in our immediate family:

Oldest Nephew - Sept 20th
SisterK - Nov 9
SisterS - Nov 30
Soon-to-be-SIL - Dec 10th
Only/Big Brother - Dec 15th
Mum - Jan 1
SisterCh - Jan 5
Dad - Jan 21
SisterJ - Feb 8

Hence, The Clump. If you throw in a couple of cousins, both of my grandfathers (who are now deceased), and a handful of anniversaries - not to mention Christmas, Thanksgiving, and New Years... well, you can see how it might get a little crazy around here sometimes.

When I was younger, I was jealous of The Clump - everyone in my family had their birthdays all together, and I was stuck out in June all by myself. (Of course, they were all jealous of me, because it was for my birthday and I could have cookouts. Grass greener and all that.) But additions to our family in recent years have contributed to a sort of Mini-Clump in the late spring. Now there's

Youngest Nephew - May 2
Lil Girl - May 21
Soon to be BIL - May 22
Me - June 5

It's not quite so isolated now, and with all the graduations and first communions we've had over the years, it's hard to remember a time when it really was just me, out there all by myself. I kind of like that our Mini-Clump is gathering new members... we'll see what the future brings.

Anyways, tomorrow is our first Clump-party: SisterK will be coming for cake, and my cousin, her husband, are coming down from Maine to introduce us to their new baby (yay! except I've been worried about my sinus infection and being contagious, but the doc said it's not strep, and I've been on the antibiotics for... well, these ones for a week, and he said I should be good. I've got masks, though, just in case.) I've finished up SisterK's present, and am resting, resting, resting for tomorrow. Now if I could only get some actual sleep, it'd be fabulous.

You know what I would consider fair?

I would call it fair if, as consolation for having the "sinus infection that laughs in the face of 3 (count them 3!) antibiotics," my sense of smell was diminished a bit. You know that whole hyper-olfactory sense? Yeah, I shouldn't be able to have that and what feels like three elephants sitting on my head. It really should be an either/or type deal...

But, if there's anything we all know, it's that fair very rarely enters into the equation.

It's certainly not the worst thing that I've got going on, but it just seems illogical that my sinuses are so clogged that I have to turn my head every three minutes or else that side starts to throb and my eye waters, and yet I can also smell that somebody has their fireplace going down the street. And that Mrs. PUS spilled gasoline in the driveway (Which is right outside my window. Yeah, my love for her knows no bounds.) when she tried to fill up the snow blower.

Doesn't that just seem wrong? Smelling or snot, but not both. That should be a rule.

I specifically waited until after The Office...

so that I could pepper this link with a fabulous quotes from this week's episode.


Here's is Dwight (Oh, boy was Dwight awesome in this episode): I keep various weaponry strategically placed around the office. ... People say "Oh, it's dangerous to keep weapons in the home or the workplace." Well I say it's better to be hurt by someone you know accidentally, than by a stranger on purpose.

I've never actually had a full-time, paying job. When I was a teenager, I babysat pretty regularly & subbed as the secretary at the local rectory. For two years before I got sick, I'd been an assistant dance teacher at the dancing school I took lessons at, but it was paid in kind - teaching classes to pay for my classes & a discount on the costumes. (Did I ever mention that? That I was a dancer before I got sick? I can't remember now...) When I got sick, I was 15 - about 9 months shy of being old enough to get my work papers (without parental permission and a whole lotta red tape). It worked for us. Anyways...

Then I got sick, and I went to school ~ still took some babysitting jobs here and there, but that was all I could manage. Then I did my placements and internships and semesters as a student teacher, but none of those are paid positions.

So I've never been in a union. What I know about unions comes from repeated viewings of Newsies and the scattering of information to be found in economics classes, history classes, & sociology classes about the intersections of poverty and prosperity. I realize I don't know too much about this strike beyond it's ability to impact me, as a television viewer (No Daily Show! No Jon Stewart! No Steven Colbert! How will I liiiiiive??)

But it seems to me that the contracts of workers should have to keep up with the development of newer technologies in that particular field. I don't find it absurd that they're asking to be included on ALL of the profits from their work... in fact, it makes no sense to me that there's even a debate about it. Aside from greed (or other excuses that seem to boil down to greed), I haven't heard any justification of the opposition's position to this increase.

And that's why I'm so glad that Steve Carell said he wouldn't cross the picket line, even if it means that there won't be any new episodes of the Office to watch for a while... Because he's standing up for the people on his team, doing what seems right to him. As if I didn't already love him enough.

I am not a normal people.

I know it most when I watch them go - walking, talking, absentmindedly - absent-bodily, actually.

They move without thinking, sure their bodies will obey. They don't think through each step; don't plan out those quick head turns. They never pause & wait for the "all clear" before continuing.

To them, movement is natural: It just happens - their feet know when to lift, when to fall. How fast they run down the stairs - never having to check, to reassess the distance between steps.

Their hearts beat faster when they need them to, slow down of their own accord.

If they trip or fall, it is because they were going so fast - too fast to notice an untied shoe or cracked sidewalk. It isn't because their bodies can't remember how to make energy or just gave up trying. It isn't because their nerves are too busy receiving pain signals to comply with the order to 'go.'

When they pause to talk to someone, they don't spend the conversation worrying about whether or not their heart will choose this moment to stall. Or if the person they are talking to can notice that they don't understand what they are talking about.

They walk. They stoop and swivel and sway as they go.

All of their systems remain connected: Each speaking to the other frequently, sharing all of the vital information that a person's body requires. My systems have turned rogue - secretive and paranoid, deciding it's best to only communicate through a complicated series of guttural clicks and signal fires.

While my body has decided to boycott anything more strenuous than yawning, theirs amble on. As they flow freely from one place to another, my body gasps at their courage - or foolishness. To face the sun unprotected?!? To wander recklessly without holding on to walls?!? To spray things at themselves without concerns of headache or nausea?!?

To move as if pain were not their constant companion?!?

Don't they know that sleep is the body's enemy? Obviously not, as they seem blissful in their hours of rest. My body knows better - it recognizes sleep as a necessary evil, battles against it as long as possible, often with remarkable tenacity. When it finally gives in, it does not surrender completely - the battle continues again and again, all through the night. And when the sun rises, I am all too aware of who has emerged the victor.

Perhaps it is their bodies that are neglectful - ignoring the obvious threats posted by any common wayward smell or ray of light. Perhaps my body is right to guard me from standing: after all, it is a a much higher place to fall from. Perhaps it is right to keep me from straying to far from my bed, to limit me to view the world outside from my bedroom window.

Perhaps.

But I'll take one of those neglectful bodies, any day.

Here I am ...

Not too late for today's post, but a little late in the day for my brain to be working. But I have a good excuse - or, rather, a familiar excuse. I'll give you a hint.. it rhymes with Finus Bnfection.


Yes, that's right... the sinus infection from two weeks ago decided that it had enough of this whole "I'm getting better and just lingering a little" phase and decided instead to try on "I think I will make her throw up because the pressure in her head is so bad" for size.

So, a whole new antibiotic and a narcotic or two later, here we are.


Thankfully, I had a doctor's appointment scheduled for yesterday anyways, and Zack took one look at me and said, "What is with this sinus infection?"

And I don't mean he looked up my nose or down my throat and said that... I mean, he walked in the room, saw me, and said that. It was not the best compliment I've ever received, but it's also pretty awesome how well he knows me.

We talked about a whole lot of other stuff too - updates (including why my next appointment is with a neurosurgeon, and wth is Fibromyalgia-plus?) to follow on a day when I'm not oozing anything.

There, now aren't you glad you stopped by?

:)

MBSM

Most people are putting their Halloween pictures up for MBSM, and I already did that here, so I'm just going to leave that link for anybody who hasn't seen them.


As for other things, I'll just give you a brief update: SisterJ started back to work today, and she says that it is much easier today than last time. Last time, 2 weeks ago, when she was crying and hiding under her desk on the phone with me. I'm very, very glad that things are going better than that today, but since just about anything would be better than that, I'm not sure exactly what it means.

I do know that in the past week or so, I've seen a marked difference in her behavior & attitude - an ability to see past the next five minutes, for example.
Less panic, more steadyness.
Actual laughter. (Which, after she left, made me cry happy tears, I'm not ashamed to say.)

She's starting to resemble herself, and I am starting to not feel as if I have to check in on her every couple of hours - or panicked when I can't reach her. It isn't a miracle, of course, but it feels like one. Bit by bit, day by day, things are improving.

This is her third antidepressant, and it looks like it is finally starting to help her. The therapy is finally starting to help. She's finally starting to recognize that there are options and that time and life are not her enemy. When we talk, it isn't always in desperation: there's room for other thoughts and people, for the future, for planning. She's able to see that losing this job isn't the worst thing that could happen to her, that she can bear the weight all of the pressures she is under.

She has hope, again - I can see it.

It's still slogging through each and every day. It's still almost unbearably hard and sad and scary, but it's better, and I wanted to thank you all for listening and supporting me. Most important, I wanted to let you all know that things are changing, one little bit at a time.

It is November 4th, is it not?

Because I heard Christmas music today.

And the Christmas channel is back on our digital music choices.

And that stupid Christmas Reindeer commercial for the Christmas Crafts Fair - I don't know if they have these in other places, but every year this stupid reindeer insists that there are only "Three shopping days till Christmas:" the Friday, Saturday, & Sunday of the craft fair. Which happens to be next weekend. But the reindeer's voice? ugh.

Of course the Christmas tree stuff is up in stores, I've heard. I'm not going to a store, and I'm using this as a reason why not.

Because Halloween was 5 days ago... literally FIVE days ago. That means it is not Christmas time yet. I love Christmas as much as anybody ~ I really, really do ~ but I like it to start after Thanksgiving. So that means it is much too early for this:

You know, I am reading things besides Llama, Llama red pajama... and here's a little update on some of what's been making its way through my brain this week:


Here's the Quote of the Week, Books -->

"It had been a terrible day - Mam hadn't gone to Mass, and it's impossible to convey how serious this is to someone unfamiliar with the Irish Catholic mammy. The ICM won't miss Sunday Mass even if she's got rabies and is foaming at the mouth - she'll simply bring a box of tissues and brazen it out. If her leg falls off, she'll hop. If her other leg falls off, she'll walk on her hands while still managing to wave graciously at neighbors passing by in cars." p 54 Marian Keyes - The Other Side of the Story

I hadn't read any of Marian Keyes before, and I thought this was a great book - funny and honest and smart. This quote alone would make the book a keeper, because it's so true. My Grandmother is an ICM - My uncle usually drives her to church, but if he's not available and even though she has to walk down (and then back up) a hill that is referred to as Dead Man's Curve (I'm not joking), she'll walk it. In the snow. At age 90, with macular degeneration so bad in one eye that she's partially blind. (Of course, she could just call and say she needs a ride, but does she? No. But that's another story.) She honestly believes that giving Youngest Sister the Mass schedules for every church within 10 miles of Harvard Square is going to be enough to make her go to Mass every Sunday. When YSister calls home, Grandmother asks her which priest she had for confession. It's pretty funny.

But she's also, in recent years, become a lot more lenient in regards to other people's faith. When she lost two sons and her husband of nearly 65 years within a 2 year period, I think it changed things for her somehow. Shook her in ways she'd never have expected. I know she believes, but I don't know exactly how she believes. I wish I could have her faith, just that ability to know inside herself, but I don't. So it's amazing and wonderful to me.

But, even though she called the Pastor at her church when she found out my sister was reading The DaVinci Code, she's not nearly as set in her ways as she could be.

She's an odd mix of the radical - in that many of her more liberal beliefs fall way outside the official Catholic canon - and the traditional. She's pro-Gay rights, but not Gay marriage. She's against divorce, yet told me that leaving my father (her son) was the best thing my mother could've done (for all of us involved), and sees my half sisters (technically not blood related) as just as much a part of her family as any of her other grandchildren. I had always assumed that it was at her urging that my 16-year-old parents had gotten married in the first place, when my mother turned up pregnant, but learned recently that she was initially against it - and that she had offered my mother a home with them should her family object. She's always been extraordinarily kind, but she's also got unexpected pockets of coldness and stubbornness. She remembers all the Holy Days of Obligation - If I see the parking lot for the church across the street start to fill up, I'll call her and ask her why... and she'll know.

No matter what, though, I know if it's 5:00 on a Saturday, or 9:00 on a Sunday, Grandmother is at church. Even if she has to walk on her hands.

Missing:

It may just be the end of the world: We have misplaced our copy of Llama, Llama, Red Pajama. A true tragedy, my friends.

Nevermind that we have, literally, hundreds of other books. Only Llama, Llama will do! LilGirl is, I am proud to say, a book lover. And when she's in love with specific books, there are no substitutions allowed. Llama Llama was last seen on Saturday, at Grandmother's House, although she insists it is not there. It is also not in the blue bag we brought back from Grandmother's House, either basket Lil Girl's books live in, or any of its usual haunts. I have faith that it will be found, but not during this naptime... Hopefully, when she wakes up, she will not remember that she wanted it, and we can instead see how many babies will fit into this carriage.


Also, while searching for a picture of Llama, llama, I find that there is a NEW LLAMA - Llama, llama mad at mama. You know who's going to the bookstore this weekend, right? Well, not me... but I can send somebody!

Yay! NaBloPoMo Day #1

I'm still up, and it's after midnight, so I figured I'd get an early start on things.

Hi, everybody!

How was your Halloween? We got about 10 Trick or Treaters, total. And more than half of those were 12 year olds in wigs, with pillowcases. And eggs. But, whatever. My two favorite Trick or Treaters showed up, even though I was beginning to doubt that they would make it, and that was enough for me.

Here's what made my heart happy tonight... it's a good thing to start the month off right, that's for sure. (even if I didn't get the red eye out yet... you know they're not really demons, right? )

: Deep Breath :

Well, I'm gearing up for National Blog Posting Month, determined to post once a day, just like last year. (Although it seems to be more organized, and a bit more intimidating this year.) I'm committed to it, since cutting back on blogging because things have been crazy here hasn't cut back on my urge to blog (or the guilt from not blogging). So get ready for at least one post - every single day! Can you imagine? I'm quite looking forward to it, and to reading all of your posts as well.

Hope this Halloween finds you happy & healthy!

Taking Care

Sorry, but I've been too busy watching the World Series to post.









Yeah, I didn't think you'd buy that, but it gave me a chuckle to write it anyways.

No, in reality, it's more I've been trying to take care.

Care of SisterJ whose connection to the world seems fragile at best, and who needs so much, and makes me wish I had better answers (or, indeed, any at all).

Care of SisterCh who did the totally selfish thing last week, instead of supporting her sister, and now feels even more isolated from our family. Which is what I knew was going to happen when she decided to go back to Loser Boy, so I'm setting aside my anger at her behavior in order to help her see that she's still loved. Care of Youngest Sister, who spend all week 'preparing' to write a 7 page paper, totally intimidated by her first Harvard assignment. Helping her move past the fear to get to the actual writing took us 7 days... and she finally finished it at about 3 this morning, 5 hours before it was due. I know the next one will be easier, but jeesh...


Care of Lil Girl, who (like her brother before her and Oldest Nephew before him) helps remind me that there is happiness in the world, that I am doing something important with my life, even if it's not what I'd planned to be doing.


Care of Grandmother, when we found out one of my uncles (her second oldest) has lung cancer - a tennis ball sized tumor, but not metastisized, thankfully - on the 7th anniversary of another of her son's death. (PS. Typing "Lunch Cancer" instead of "Lung Cancer" probably isn't worth a chuckle, but I'll take them where I can get them these days.) Care of my other grandmother, Nana, whose doctors think she also has lung cancer - and taking care of her, in this case, means convincing her to not bury her head in the sand like she would like to: to at least have the (non-invasive) PET Scan (hell, I've already had 2!), so that they can have a better idea of what she's really facing.

Care of Mum who pretty much refuses to let anybody take care of her, and I seem to be the only one who's recognizing that this is all ridiculously difficult on her too. No, that's not true, but SisterJ can't feel better just for her - although she'd like to - and the rest of them just aren't helping as they should. So I try to make her eat, by eating. Or TiVo stuff for us to watch together and ask her to sit with me. Or nag her until she calls the eye doctor about her weird rash and makes her (2 years overdue - like Nana, like Mum!) GYN appointment.

Care of a cousin, pregnant with Twins - her first, very high risk pregnancy. Who's now confined to 'light bed rest' (meaning she can go to the doctor's appointments and the bank, all in the same week, but only if she absolutely has to) with more than 2 months left to go. Who never thought she'd have kids, but, now that she is, spends all of her time worrying over how not to lose them - and throwing up so hard it comes out her nose.

I'm trying to listen, I'm trying to help. I'm just showing up, because it is all I can think to do. I'm having trouble showing up at all the places I want to be though - a friend's housewarming, the other end of College Roommate's phone calls, this blog, friend's blogs - and because I'm also trying to take care of me, I'm giving myself the space to not feel guilty about that right now.

However, this is definitely one of those weeks where I'd like to dissect alive, piece by tiny piece, the people who wrote The Secret: "Law of attraction - really? Well, let's see... my scalpel seems to be unnaturally attracted to your pinky toe nail, whoops, I meant the whole toe... and also your kneecap...and..." Because there's only so much 'thinking your way to the positive' you can do when your body is trying to reject your babies, or when your brain is telling you that the only time you are safe is when you are asleep, so wouldn't "sleeping" forever mean you'd be safe forever?

Some things I've read this weekend

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. :)

Things that keep me busy

- an essay in pictures:

On GOOD days










On BAD days

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

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!

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).

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!

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!

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!

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.

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.

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.)

Lil Girl (Youngest/Only Niece) --- Eatin her first cherry tomato, fresh from the garden

Originally uploaded by bbackprple

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!

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.

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.

I missed both My Best Shot Monday and my assigned day for a blog tour book review yesterday because I am trying to fight back against some germs before they take over my body (completely). Today's a bit better though, so I'm hoping to have one &/or the other up at some point.

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.

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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!

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?

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!

Going for a ride

Going for a ride
Originally uploaded by bbackprple

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!

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.

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.

Damn right it isn't. It SEEMS obvious, it seems right, it seems like something that you wouldn't have to tell yourself over and over and over again, but... that's just the way it works out.

• 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

Well, why the hell not? Her I've been waiting all this time for an apology??? No, seriously. I'm still angry, but I'm not always angry, and I think that's an important distinction.

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.

Oh sweet little baby Jesus, why didn't I read this 13 years ago? And why do I still need to read it today?

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.

"Hea-wo?"

"Hea-wo?"
Originally uploaded by bbackprple

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!

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!