I'm back...

and the doctor's appointment wasn't too bad. Not too much poking and prodding. Those next steps I was concerned about? Muscle biopsy. Oh goodie. Sounds fabulous.

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Found out tonight that Youngest Nephew (age 6) is NOT coping well with the arrival of his new little sister. Their Mum (SisterN) is worried b/c he's so aggressive with her, feels like she can't even turn her back, in case he tries to hurt her. I got all this second hand, when SisterJ went over to visit them tonight. I was like "Um... this is totally normal. She needs to just make sure that he knows he's not allowed to physically hurt the baby, and, at the same time, let him say anything he wants to about her - "I hate her, I wish you'd send her back," etc. SisterJ says SisterN is feeling guilty and overwhelmed and just horrible.

I feel horrible myself.

Because, I expect this to be a difficult transition for him. I expect him to act up and to be pushing at all his limits. And I just want to rush over there and fix things. To help her set boundaries for him, and not let her guilt get in the way. To show her that it really doesn't matter, that things will get better as time goes along. And it's not that I know everything, where SisterN doesn't. It's more that why should she try to do this mostly on her own? Brother's back at work now, so that leaves her with just the two kids . Alone. During school, just BabyGirl, but after 2:30, she's got them both. Alone.

I don't know... It just makes me physically ill to think of them all suffering over there, when I feel like I could be of some help. But if I offer, does that make it seem like ... "Well, I don't think you can handle this on your own, so let me tell you what I would do?" Is it like that --- I don't even know!!!


I am, however, sending a copy of This book over ASAP.


I can't decide if that makes me a know-it-all, pushy bitch or a concerned sister/auntie. I know I feel like the second, but maybe I come across as the first?

I just wish I could help them all.

Feeling: pooped. It's been a long day.

Night!

Some randomness

Have a doctor's appointment later today - must discuss list includes: My inability to get him on the phone &/or have him return my messages; WTF is happening here? I have no idea what the next steps in my treatment plan are supposed to be (mostly b/c he keeps changing his mind about which direction he thinks we should go in); & when will my next IVIG be, so I can plan around it.

I love this doctor - he is kind, listens well, & genuinely tries to help - but we are going on three years together, and I have made very little progress. I know there is no cure/ accepted treatment, but there's got to be something.

Also? I turn into a huge wuss at the doctor's office. It's embarrassing, but I have such a hard time just sticking up for myself when I am there. I go in with these mega-lists, but somehow he starts talking about something else, and by the time I think to get back to what I wanted to talk about, he's ready to move on. MUST BE MORE ASSERTIVE.
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We have ants (told you this was random). Those little tiny ones, that are really not dangerous, but highly frustrating and annoying. Mum is trying the non-smelly spray, but if this doesn't work, I might have to pack up for a couple of days, go visiting. Am not especially looking forward to this. I had to pack up right before my birthday last year, too, and missed my shot at any festivities.

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Speaking of - My birthday is rolling around again. On Monday. I'm supposed to decide whether or not I want to do anything for it. Telling people to leave any presents they may wish to give outside my door & go away is probably not an acceptable scenario.

I'm of two minds here -

On the one hand (maybe I'm of two hands? But aren't you always of two hands? IDK what is up with me today either), it is my birthday and I am still sick. This will be the 11th birthday since I've been sick. I missed out on the big Sweet 16 thing; never went out drinking on my 21st; haven't yet managed to get the energy/wellness level necessary to take the whole gambling trip my Mum & sisters promised me for my 25th. Big hooplas are beyond me. And even semi-small hooplas have huge repercussions: I don't want to be 'paying' physically for this one day with the next three weeks.

On the other - it is my birthday. And I am fed up of having to miss out on things b/c I'm sick. Maybe I'll have people come over and, claiming birthday privilege, hog the baby all day, or force people to play board games.

Hmm...
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Vat else?

Not too much. Must clean my room soon, as it is driving me insane. The clutter is multiplying and will soon attempt to swallow me, I am sure. (It's not actually too bad - it's mostly that I have a lot of projects to finish & no energy to do so.)

And that's all I know today.

Hope your Hump Day passes quickly & happily!

Saturday Photo Scavenger Hunt

Red ,
White,
& Blue


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Well, I just happened to notice that my brand new niece's (see previous post) hospital blanket was red white & blue...

















As is her big brother's soccer uniform...















And, just to round things out, their daddy, my big brother, almost 30 years ago, wearing a sailor's uniform, just like our daddy.

Have a great Memorial Day weekend, everyone!

And remember the fallen in your own way.

Baby Girl is Finally HERE!!!

Well, Youngest Nephew is finally a big brother - his sister was born Sunday, the 21st, at 7:03 p.m. She is healthy, and was 7lbs 15 oz, 20 inches long when she was born. And her parents did (eventually) come up with a very beautiful & sweet name for her ...

Unfortunately, I'm still not as comfortable as most of the blogosphere seems to be with posting real names & pictures. I'm getting there, as it does seem kind of silly to be using "code names" for my family, but I guess I'm a little bit too paranoid still.

But (even if I'm not yet willing to post her name), I can't deprive you of ANY baby pictures...













and LOOK at these little piggies....

A Flowery Sort of Post

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Today's theme is flowers. If we had any flowers around here, they have all drowned, because it has been raining for over a week. (The sun did make an appearance today, but mud is definitely the reigining theme outside).

So instead of real life flowers, I must again resort to searching through the pictures I've been scanning to see what I can come up with.

Be afraid.

Why afraid, you ask?

Behold:




What could that hideous pattern be? A couch perhaps? Wallpaper?

No. If only we could be that lucky.





It's a dress - a fancy one apparently, as my grandmother wore it to her daughter's wedding. I'll grant you that the wedding did take place in 1976, but could this ever have been fashionable?

Which is not to say that my grandmother didn't have excellent taste in wallpaper and couches. No, that doesn't prove that at all....

These do:

That's right folks... flowers and pigeons ...quail...pheasants, maybe? Some sort of bird, at any rate.

And, while she may have bought this couch in 1976, it's now 2006 and the couch is still in her living room.


Even better is that they inhabited the same room as
these curtains.















This picture ---that makes us all grateful that there wasn't color film in this camera (circa 1949)--- proves that bad taste was not limited to my gene pool (they're from my stepdad's parents).



There seems to be some sort of jungle flower wallpaper, and yet... the couch? It seems to be a completely unrelated, and yet flowery, pattern. I can only guess at what sort of color scheme this might work in.







And one last picture, which would probably have been better off in black and white, shows that perhaps, it might be best NOT to buy furniture that people will clash with no matter what they are wearing. These two flower patterns? We're obviously doubly blessed.


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So there's my bouquet for you today... I'm looking forward to seeing all your entries.

And a big thanks for all of your support last week. It really means a lot!

Not too much to report

I think I'm a bit behind here, but I have very little to talk about right now, and wonder at the idea of posting just for the sake of posting.

So instead, a quick round up of what I know (that you may or may not):

If you live in another part of the world/country, you may not know it, but Massachusetts and the surrounding areas? Are kind of drowning. Although I consider the sun to be an enemy of sorts (with my FM, comes sun sensitivity), it is awfully strange not to have seen any sign of it for more than a week. And the sound of rain on the windows, which usually is comforting, has moved past annoying. And schools have been closed on account of the rain. My grandmother, who's worked in the public schools here for more than 60 years, doesn't ever remember that happening before. Ever.


Thankfully, my family lives in areas where they've been mostly unaffected by the flooding (the hills of our city have to come in handy sometime), but I've missed a doctor's appointment already b/c there was just no way to get there.

Which adds a little bit of extra worry to my next tidbit - the fact that we are still waiting for my first niece to be born.

Most of the bets in the baby pool have already passed, and yet, no sign of baby. At yesterday's checkup, Mum & babe were both doing fine, and "can go at any time." The actual due date has been moved around so much, that no one's really sure if baby girl is late or just taking her time. I wouldn't mind so much if my SIL didn't seem so uncomfortable.

Here's a belly picture from two weeks ago....

Trust me when I say that it is much bigger now. And, while she looks incredibly cute pregnant, you can see how uncomfortable my poor SIL is.

But babykins is determined to take her time, and we're all just going to have to deal with that.

Having the hardest time dealing with that, is her older brother. Age 6, and previous only child. The bigger Mum's belly gets, the more frantic and agressive my nephew becomes. His buzzing is driving a lot of us very crazy, and even my fabled patience is starting to wear a bit thin.

And I have all the child development knowledge and experience that his father doesn't.
I know how hard a transition this is going to be for him, and have made some changes in my interactions with him(& suggestions for changes to others), but still.

Last week, he told us that we were "old & boring & mean" and he wasn't coming back the next day (we watch him afterschool).

I was "unfair" for making him eat his dinner & refusing to allow him to have dessert when he still chose not to do so.
My sister was "horrible mean" because she tried to talk to me about something that didn't include him.

I tried so hard to stay calm, but wound up telling him that, since he couldn't say anything nice to any of us, he should not say anything at all.

It was going home time, and I told him to get his shoes and coat. Of course, there was another round of how mean we all were. My mom said I practically shoved them both out the door, saying I hoped he'd bring a better attitude with him the next day.

I didn't exactly lose my temper, but I wasn't exactly keeping my cool either.

I'm trying very hard to keep in mind that this kid's entire life is changing & he doesn't know how to deal with it. We're reading lots of big brother books, and focusing on the things that will be the same & the things that will be different for him, but the waiting is grating on his nerves (more so than anyone else's - but SIL, that is) & he wants to "GET ON WITH IT ALREADY!!!"

Can't exactly blame him.

And tomorrow's his day in the baby pool, so he may just get his wish - and a couple of bucks to go with it, if he's really lucky.

Any suggestions for how to best help big brother? Most of the books talk about older siblings that are 2-4 years older than the new arrival, & 6 is a whole different place, developmentally. I'd love to hear any ideas or experiences you could share.

Keep your fingers crossed for baby girl, cuz they still don't have a name picked out, either.

Celebrating (of a sort)

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Today's topic is celebrating.

Well, I'm taking adding my own little twist here, because what I'll be celebrating this weekend is National CFIDS Awareness Day. (Technically, it was May 12th, yesterday, but today's the day I get the most traffic here, and I'd love to use it as best I can.)

CFIDS = Chronic Fatigue & Immune Dysfunction Syndrome.
People who suffer from CFIDS also have higher rates of
Fibromyalgia. Since there is a high rate of co-morbidity, May 12th (smack dab in the middle of National Arthritis Awareness Month) also happens to be Fibromyalgia Awareness Day.

Fibromyalgia & CFIDS are life altering, debilitating illnesses.
For which, there are no known causes or cures.
Treatments are varied and limited to management of disease symptoms, not the underlying issues.
Theories abound,
funding is minimal,
and the patients who suffer from these diseases are often misdiagnosed.

Public support for these illnesses - both because there is little known about them (at one time, CFIDS was dubbed "the Yuppie Flu;") and because of their belittling names (go here for a discussion on how much of a misnomer "fatigue" really is) has varied - although, as research continues to show a biological basis for the illnesses, the medical community, the media and the public seem to FINALLY be catching on to the horror of living with these diseases.

At the end of this post, I'm going to be full of link-y goodness for you to check out, so that, if you so wish, you can learn a lot more about CFIDS/ME. I hope you check some of them out.

But, since we're looking for pictures, here are some of the best CFIDS &/or FM related pictures I've found on the web:

These t-shirts are produced by various individuals and illness related groups,

& are all available for purchase from cafe press.


I hope they can give you some idea of what these diseases are like





And why it's so important



that we fund





& find



a cure

NOW.

A big thank you to all of those who've supported me during my battle with these dreadful illness: 12 years into this mess, and I wouldn't have made it a day without all of you. (Including my new blogging friends, who've been more supportive than I could've expected!)

And a special Mother's Day thanks to my mom. For more than I could ever say. (Now, if only she knew I had a blog...)
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Here's the link-y goodness I promised you:

Learning to Live With CFS: We Are Here, We Are Here! *

Laura Hillenbrand, author of Seabiscut, discusses her initial fall into illness

Autumn, a fabulous blogger, does her usual fabulous job of connecting the dots over on perfection on a curve. How many degrees away are you?

A good a reason as any for cake, right?

Support groups I've found helpful include But You Don't
Look Sick & SleepyDust.org

For More Information Check Out:

Co-Cure

The CFIDS Association

The International CFS Association

The Fibromyalgia Network

& The National Fibromyalgia Association.

Things I am not

1) Secretary = WHY am I the only one who can answer the phone here? Why is it that people can't tell their boyfriends that they aren't going to be home so that they don't call and ask me "Is J there?" or "Do you know what time M will be home?" No; No, I don't know. And what's more? I don't really care either. I am not in charge of their social calendars, nor do I want to be.

2) Walking dictionary = There are such things as dictionaries: They are books in which you can find the spellings and meanings of various words. Here is how you can tell the difference between me and them - I am not a book. And I will spit at you if you ask me how to spell something else today (unless you are 6: if you are six, I will respond kindly and help you complete your birthday thank you notes - but you must be 6).

3) House IT = Listen, I'll admit that I am semi-computer literate. But I don't know how to fix your 7 year old computer when it goes blue screen; we've already talked about this. And no, I don't really know how much memory you need to illegally copy DVD's - and no, you can't try it on my laptop. And, yes, I do know how to search the internet. No, I won't search it for you. No, I won't book your trip to some fabulous place that I can't go.

4) Thin = I tried on clothes today. It was horrible - I seriously considered trying on maternity clothes, as they were much cuter than the fat people clothes. Why are fat people clothes ugly? Old Navy has cute (ish) & comfy bigger outfits. But they are not dressy enough for a wedding. Which I have to go to TOMORROW!!! I will be wearing, who knows what. Parts of other people's old outfits, it looks like.

5) Happy = I am very conflicted about going to this wedding - on the one hand, I will see PEOPLE! Friend-type people! That I haven't seen in a while! On the other, there will be smells, and pain (during and post), and exhaustion, and meds to take that will screw me up even more, and just too many things to have to think about.

I can not simply GO to a wedding.

I have to think about all these stupid things that I don't want to think about.

I have to think about whether or not I will be able to breathe in a church full of flowers and people who forgot that perfume is not for bathing.
I have to think about how sore I will get sitting in my stupid wheelchair for more than five minutes, and how I will need to take meds before that will make me feel loopy.
I need to think about how much pain I will be in afterwards, how I won't be able to make it even to the bathroom for a few days, and whether or not it is worth all that effort just to see some friends.
I have to think about how depressed I will be if I talk myself out of going because some bad things might (ok, will) happen.
I have to think about What if the baby is born on Sunday or Monday or Tuesday and I am too tired to get out of bed? And I will miss my first niece's first day on the planet.
I have to think about why I am being so bitchy to people who haven't done anything except try to help me figure all this shit out.


6)Giving Up I know that this is just for today. This is just right now. I do not always feel this way. But tonight, it sucks.

BADD (part 1)

BADD = Blogging Against Disablism Day (which I missed, so this is my round up of everybody's FABULOUS posts!) Disablism, in case you don't know is discrimination based on illness/disabilites.


"What I wish folks would understand is that all human institutions and structures were built with a nondisabled population in mind. When people with disabilities ask for accommodations, they're just asking you to think about them, too." A more lawyerly perspective over at diability law.

Among the strengths of this text, the publisher touts, "a balanced perspective that reveals the diversity of American women." Or maybe this example of a "balanced perspective" reveals something else. More things I never really thought of regarding history & disability.

Angel Moon Art had some wit & wisdom I appreciated:Seems the hardest thing for any disabled person to gain access to, is not the library/cinema/shop etc.... but a little common decency and respect.
Anyone got a ramp for that????

Under the "why didn't I write something like this?" catagory -
But the interesting thing about prejudice to this group (of which I'm one) is that oftentimes disablism is mistaken for kindness

A theme that popped up quite a few times was that of daycare for disabled children.
Dream Mom had a particularly moving post on the topic


And I'm absolutely in love with a chronic illness bill of rights over at billiesdiary.

Ok, I'm really only about halfway through the alphabet here people, and I'm outta energy. I'll try to post some more tomorrow, but, if you get the chance, check out the whole list here.