Archive | October, 2010

Wrapped Canvas Groupon! Woohoo!

16 Oct

I know, I know… This is a short one. Really.  I know I say that in almost every post and email and then I get typing and the time just *poof*.  Huh?  What time is it?  How long was I… Oh! Hello!

Anyway.  I bought my first “groupon” a couple of months ago and redeemed it on Friday and kicked myself for not having bought more than just the two that I did.  It was for a 16 x 20″ wrapped thick canvas print from CanvasOnDemand.com for $45 and that includes shipping!  (the retail value was somewhere around $120)

I was thrilled to see that they are offering it again on Groupon! They are perfect for gifts for the upcoming holidays or if you want to customize your walls with your own fantastic art.

Here’s one of the photos that I am having done… It’s a nice shot of color that just makes me want to do stuff (so I also have it as my background on my desktop)…

Anyway, head on over… The Groupon opportunity ends on Sunday night.  Definitely one that should not be missed.

Here’s the link again:  Groupon.com

xo

Bek
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This is it….Now I have Huey Lewis & The News in my head.

14 Oct

for today.  Too crummy feeling to write anything meaningful… Though Grey’s did set me off on a rant this evening. I mean really, who wouldn’t want a decommissioned firehouse reno with a fire pole to call their own!??!?!?  And letting nature take it’s course as far as getting pregnant with a reproductive issue and a genetic issue possibly on the table (I think the truth is always the best thing) for Meredith and Derrick… It made me a wee bit bitter.

A good percentage of us don’t get that avoiding science and medicine thing at all in our lives, and especially when it comes to having kids. And for many of us it’s not by choice that we have to have all sorts of interventions, and it’s not our fault (though people sending me links on how I can cure what can’t be cured is getting old.  Also getting old: people sending me thick photocopies of information on curing a disease I don’t have.  I have Type 1 diabetes even though I’m 34 and well padded- an unwelcome reaction to the various treatments I have had over the years and tight control and loss of mobility due to other crap. Jiminy freaking crickets.  I get that people want to help, but here’s some advice to friends and relatives and strangers:  if you find out a loved one is sick or has a chronic condition- before you send them all kinds of stuff (particularly “cure” crap and assorted “the medicine you are on is evil” crap (because it may be the only medicine they can take for what they have) stop and check your ego and ask “what can I do?” or “is there anything I should know or read?” or “can you recommend a link/site where I can learn more?”.  That would be huge for everyone.  Instead, those of us living with various illnesses that we did not ask for or give to ourselves would stop feeling isolated and instead feel supported and yay!   That would be heartwarming and take a whole pile of anger out of the universe- or I guess because it cannot be created or destroyed, it would shift into warm, cozy, happy. Again:  YAY!

Darnit. I lost my train of thought and my eyes are all achy and swimmy.  I can’t keep track of my parentheses.  My apologies.

I’d like to think I wouldn’t be this cranky if I could take cold medicine or nyquil, but I can’t take that shtuff, so it’s saline and Coldcare (boiron. Works well, but man could I use a nyquil-style sleep right about now).

ROAR! YOUCH!

I think I’m going back to my Little House on the Prairie and BONES diet.  At least until I’m feeling better. But today was the LHOP where Pa has to put Bunny (Laura’s horse) down and her Grandpa said he wouldn’t let him do it, but he had no choice in the matter because it would have been cruel not to put Bunny down because back then they didn’t have hospitals like Angell in Boston and specialists who… Anyway.  That and the Nellie pretending to be paralyzed episode from yesterday (I have discovered the Hallmark channel) have put me in a mood (and because I’m sick, and I’ve got a bear of another thing to deal with that I’ll talk about soon. Promise.)

Ok. This is really it for today.

Oh! Got my Cimzia starter kits, but can’t start until my fever is gone (my “I’m sick and hurty in a viral-flu-ish kind of a way” fever and not my usual “my immune system is going gangbusters on everything today” fever.  I swear, sometimes I think my immune system is like a cat chasing a speck of dust it think it saw in a shaft of sunlight.)

Goodnight.  Hope everyone is feeling fantastic, washing hands frequently (as flu season barrels down on us), and if you are feeling crappy I hope you are feeling better soon and don’t forget to cover your cough and sneeze with the inside of your elbow.

No really. This is it.  I’m 3/4 asleep and keep leaning on one key (I have been known to type-and fairly accurately- in my sleep, but today is not that day).

xo

B

P.S. Had a weird dream this afternoon that I was shopping with the fearless leader of this NaBloWriMo thingy and the brilliant mind behind “I’m Not Hannah”.  We were at this mega-shopping center thing.  It was like an open air Mall of America kind of thing and we were supposed to buy birthday presents for the kids and then do our own errands and meet up to drive back home.  It was a peculiar dream as I don’t think either of us are “mall people” (haven’t been to a mall in over 4 years.  I’m kind of weirdly proud of that fact.)

Gug. Thith thucks.

13 Oct

Alex shared.  Unfortunately, he shared his cold/bug/fever…

So I’m a feverish, sinus-pain-in-my-upper-teeth-pain, shuffling around the house snot zombie.

Great fun.

Because I am sick, I have to hold off on my starter dose of Cimzia.  I am bummed, but will take these couple of days to marvel at how strong my immune system has been (I almost never get sick with contagious stuff, only rare and strange and nearly deadly stuff) before it drops a few more notches lower when I add the Cimzia on top of my methotrexate.

I did watch the first miner come up on TV last night… Wow.  I remember when Baby Jessica was stuck in the well and how I was glued to news about it, but I don’t think I was old enough to appreciate the intensity and emotion of the miners being trapped and finally seeing the first one make his way out of the capsule. I don’t think I would have been able to appreciate that, had I not been faced with the reality of the fragility of my own existence and raising a child, and isolation (albeit nothing compared to what the miners faced).  The little bit I have experienced in my life had me glued to the TV (to FoxNews, oddly enough) to the point where I could not click around the channels to find CNN and risk missing something, so I kept it on Fox News for a couple of the rescues and then went to sleep… Today I sat and watched one of the miners emerge with Alex and I had him do an “imagine” scenario with me.  He hugged me tight and I hugged him and told him I was never going to let him go.  He told me that I’m at the very top of his personal best friends list. My heart just wants to hold him forever when he says sweet things like that. He’s a sweetie pie. A congested, teary, feverish sweetie pie

Anyway, good night folks… I have a couple of ideas on my plate right now, and will hopefully begin to tackle them for NaBloWriMo once my face doesn’t feel like it is jammed in a mammogram machine.

xo

B

Meanwhile, back at the factory…

12 Oct

The snot factory, that is.

Poor kiddo has a nasty cold and a temperature.  Needless to say, nothing is getting done- no rest, no work, NOTHING.

I’m amazed his voice hasn’t given out as he had trouble sleeping last night due to the very sad passing of a classroom pet (Finchy, the Zebra Finch) over the weekend.  He has dealt with death before, but had never seen something dead, at least as far back as he can remember.   I went in to take his temperature and he woke up and wanted to snuggle.  He looked like he was trying to cry, but he said he couldn’t.  I told him that the tears would come when he was ready and they don’t always show up when you think they will.  We sat up for a few hours eating apple wedges and toast and warm milk and then he snuggled in for approximately 4 hours of sleep.  Of course, he got me right up with tales of phlegm.  At some point baldguy got up, got kiddo settled with his listening therapy/headphones, and then went back to bed.  I was standing in the kitchen like “hello! where do you think you are going?”.  But it was too early to argue, so I made a loaf of oatmeal-brown sugar in the bread machine and left tea in the microwave (again).

Anyway, I finally got the approval for Cimzia!  Hopefully tomorrow I will be able to start.  Fingers metaphorically crossed. I’m also design-geek elated to see the OXO Good Grips syringes that they are dispensed in.  I’m not so excited by the copay but I don’t mind the $150 so much when I see that insurance is (so far) picking up the rest of the $3000+/first month tab.  Of course, $150 is still a pile of money, but that can be charged (as much as I hate to do it) whereas the $3000+ would put the hope that this treatment will work on my RA symptoms completely out of reach.

I won’t put all of my hope on this treatment, but the chance that I could feel better is worth a shot (or 2 shots the first week, and in two weeks 2 more…)

Today the boys and I assembled most of a Toy Story lego train set and it’s only in fine motor work that I realize how bad things have gotten with my hands.  I can type, no problem.  But pincer grasping and Legos are definitely off the table (step carefully! those things hurt like hell!) until I regain some dexterity.  Or until they start making cooler Duplo sets as those seem like they are just the right size for these old hands.

Other than that… No new adventures to share right now, but a new day begins in a few hours.

xo

Bek

Huh? What?

11 Oct

Sandy over at AspieTeacher.com (an amazing blog by an amazing woman…If you are, know, or teach an Aspie then it is an incredible resource… If you just want to know more about life with Asperger’s, then what are you waiting for? Head on over!

She wrote a great piece (and I apologize for only getting to it now) on Auditory Processing Disorder that expresses her experience with APD and Asperger’s.

I don’t talk about my experiences with Asperger’s that often, at least here.  Perhaps I should start doing so, as it has come to light that I have been harshly criticized by people who should know better, but for some reason, don’t.  Perhaps I need to stop giving people the benefit of the doubt, as the favor is rarely returned even when it is an extremely reasonable accommodation, causing little to no discomfort or inconvenience to the party on the other side of the communique. .

I do talk quite a bit about raising a child with Asperger’s, as I find some of my issues are challenging to explain, and sometimes I feel like a freak (and not in a jovial “hey, I’m embracing my freakdom” sort of way)… That is until I find that there are plenty of bloggers out there (and non-web based authors) who do talk about it and I realize that I’m not alone, and I’m not just some weirdo who (in the case of CAPD) can’t properly communicate with the ease of sending words and receiving them verbally and aurally.   I need time and space and often paper or my keyboard or a dark, quiet room to digest what I have heard and piece together an appropriate reply.  I need visuals to understand auditory input.  I produce visuals to respond (I type really fast and thankfully while my grip is weak and I can barely pincer-grasp/hold these days, my typing has not been impacted, though I can’t do it when the rest of me is *that* exhausted, I still can do it when I’m heading to that point, when my voice fails me). I watch TV with closed captioning on and the volume up so I can hear clearly (as long as there is no other sound in the house.  Even someone talking in the other room means I cannot focus my hearing on the TV’s sound as everything comes in at the same volume, it’s like sounds competing with each other.  It’s exhausting.  To do anything that doesn’t involve sound as an integral part of the activity, I wear earplugs or sound dampening headphones.  Simply being in the next room while baldguy helps Alex with his homework can be information overload for me, even though I am not participating, it’s like my brain just keeps absorbing and things get mashed up and jumbled and it exhausts me.  Daily sounds are a constant assault and basic things like the dishwasher and the dryer, even the coffee maker and the air conditioner, have me putting up my defenses the moment their sounds are audible.  My defense mechanism seems to be sleep.  Thursdays I can’t even begin to wake up until after 11am, as the landscapers are electrically pruning and mowing the communal areas of our development and *yawn*

With a small and now a not-so-small child around, it was hard to just pop in a pair of earplugs, and I often just gave up on doing anything that wasn’t Alex’s immediate activity-focused.  As most parents of children on the spectrum know, we rely so heavily on our senses to track our children.  We still have baby locks on doors in our home, not because Mr. Smartypants can’t figure them out, but because they do make some sound when a breach is attempted, and that sound can be just enough warning to jump into action.  Thankfully, Alex is not a runner (or a climber). Unfortunately, we usually don’t realize he is getting sick with a fever or ear infection until he starts climbing and totally loses his sense of danger (when he’s well he is the safety captain of our home), so we rely on little auditory and visual clues and a few extra seconds have, in the past, meant avoiding injury or worse.

Baldguy’s two year stint at home has meant that the time when I was once able to control the flux of sound in my environment, when Alex was at school for a couple of hours in the morning, disappeared instantly.   Here we are, more than two years since Jeff lost his job, and I still am distracted by the sound of his chair squeaking or the laundry being run during daylight.   Telephones have been off limits as I cannot focus enough to even process the bare minimum if there is extraneous sound, and I’m on edge at the potential of a distracting sound to the point where I can’t even make a word budge out of my mouth.  It’s frustrating.  It was isolating, but thankfully family and friends are on Facebook for the most part, so I am able to connect in a way that allows me the accommodations  I need, and blogging has also given me a place to put the words that I cannot speak.  The blogged stuff isn’t so much about what I can’t verbally express but it gives me a place to hopefully start a new conversation, albeit one that happens “virtually” and with the typed word.  Writing things down has been a trend since I started being aware of the changes in my auditory processing.  Oddly,  CAPD hasn’t been something I have had since birth, but rather something that seems to have  been caused by other events in my physiology.  Though perhaps I am mistaken and I was just unaware of the difficulty and compensated, under my own radar,  in my earlier years.  Who knows. All I know is what is on my plate now, and if nothing else has been learned over the past 34 years, I have certainly learned to adapt.

I toyed with the idea of adding a CapTel phone, and then the online version that Sprint offers, but that still wouldn’t give me the tools to respond the way I need to.  Email and Facebook private messaging seems more logical as I can digest the information and reply appropriately.  On some days I don’t even log on, I usually pop in for a few minutes, in the midst of the constant tasks surrounding Alex and my therapies and keeping him fed these days.  Communicating this way allows me to communicate effectively, as though I do not have CAPD and as though I do not have Asperger’s.  I don’t text because I don’t have a cell phone.  What?  You heard/read me!  Ok, I have one, but it is for emergencies and thus far I have tallied up a great deal of roll over minutes (on my Virgin pay as you go plan) that I will never use on my little old phone that can’t even go online because it is only slightly more modern than the old brick phones.  The only reason I would want never technology on a cell phone is so I could have a handy camera with me, but then I’d have to take the phone with me, and in this current status I have no idea where it is.  I’m sure it’s plugged in and charging somewhere and if we had to evacuate for a hurricane I’d surely locate it.  I hope.

But I will always be grateful for this technology, allowing me to be somewhat functional in the world, even when I can’t get out of bed, or I can’t get the words out in a spoken form.   I will always be grateful for the community of people who shift focus away from what I can’t do and look at what I can do(preferably not noticing that I may take notes during casual conversation or that I look at their mouths when they talk yet I’m not big on eye contact, especially when I am trying to figure out how to get my words out).  That is my hope for Alex in the future, that people see that amazing person that he is and any deficits are not even noticed as they are part of the whole package of awesome that he truly is.  For me?  All I want is the benefit of the doubt and acceptance. On some days it really seems like that is too much to ask and communication goes haywire, but in the 99% of the time when it does work it is nothing short of miraculous.

Anyway… The picture above is Alex with his gigantic headphones that he uses for his listening therapy (which I will be starting soon and it may help my CAPD.  It has definitely helped Alex.  I will blog about that in the future)… The review of the headphones said “these are not made for people with normal size heads!  these are for people with abnormally giant heads” which I guess was intended as a negative review, but that comment was definitely a major selling point for us as we all have very large heads…

More tomorrow…

xo

B
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