Thursday, February 06, 2014

Dark Clouds, Silver-ish Linings

It's been crazy, as usual.  But new crazy.  I've been struggling with sleep since Thanksgiving.  Yeah, 3 months now.  I don't sleep AT ALL for 2-3 nights, then on the 3rd or 4th night I pass out exhausted.  So that's been a bit draining.  (Ya think?)  My endocrinologist is messing with my drug cocktail.  We've established that both the T4 & T3 hormones for Hashimoto's actually do help me.  I'll be back on both as of tomorrow, so I've got a week of build up until we can try something else.  In other words, same shit, different day.  *sigh*

Things with Little have been rough.

Her speech and learning issues are giving her some trouble.  She's okay, but she's having to work really hard to be okay. She brings stuff home and I help her.  Ultimately she's fine, she just needs extra help getting started or staying focused.  And if she perceives she can't do it, it's meltdown city.  I then spend a lot of time walking her through the work.  This will be for multiple assignments until her confidence has been restored.  So that's school work.

The really hard part has been that she's being bullied.  The bullying is mean girl stuff.  It's manipulative, under the radar, nastiness being done by girls who are supposedly her friends.  Every day she comes home and declares if she had a "good day or a bad day."  That report is directly related to how these girls have treated her that day.  On a positive note, she's gotten very skilled in what to do in negative social situations. Probably more skilled than a lot of adults.  That's the only positive thing I can say about it. Things are so bad, that when she goes off & does other activities during recess, like kickball, they will give her a hard time for doing something else! They'll hassle her because she was playing kickball instead of being abused hanging out with them.  It's bad. It's like, she moves away from them because they're jerks to her, but then they seek her out, SO THEY CAN BE JERKS TO HER, about her staying away! Her frustration and meltdowns are high, (mine too, can you tell?) By the end of the week her fuse is so short, you can pretty much get a meltdown from walking into the same room as her.  Honestly, she's doing an amazing job in a really hard situation.  All of her meltdowns are at home.  She holds it together in pubic.  No one knows about the girl she can be at home.  In relation to this, we started her in a 'social group' at her therapy group week before last.  It's with other girls like her; similar issues with sensory, flexible thinking, etc...  They work on how to deal with social conflicts.  They've giving the girls a virtual tool box to draw from when they're feeling bad. (Colors/codes to identify how they feel.  Things to do when feeling that way.)  Couple nights ago,  she built a "real" box of tools.  She did this because she was trying to chill from what we think is an anxiety attack.  (Yeah, it's that bad.)  So, she's embracing the ideas they're giving her and really trying.  She likes it, and the girls a lot, so at least it's something that's making her happy, right?

Lastly, I've got the school testing her for her learning disabilities.  It's becoming obvious that many of these things are not going to be "resolved."  At least, not any time soon.  I'm concerned that she will run into a teacher who isn't supportive of what (extra things,) she needs in her environment to be successful.  Beside the fact that the school should be paying for some of these services, I want them to have their own documentation on her.  If we do run into that educator, the one who isn't inclined to support her extra needs, I don't want to be starting from scratch with them, on getting her help.  We have an official IEP meeting scheduled for March. I'm terrified. IEP is the real deal.  I'm scared they're going to say she doesn't have needs that I know she has and then refuse to help her. I'm scared, I'll piss off the wrong person, (or already have, knowing me,) and that will impact how they treat her.  And a part of me is scared of hearing of the things she does have, giving a real name to them.  It's like her sensory defensiveness, we knew she had a sensory issue, we just didn't realize it was a full blown thing.  We chalked a lot up to personality.  When I learned it had a name & symptoms that she quite obviously fell into, I could not have felt more guilty.  There were tools and techniques we could have been using to help her, and we hadn't even considered them.  I suspect, there is more of that on the horizon for us.

Alright, that's enough of an update for now.  I've been putting off putting this stuff into words.  The bullying & my ongoing health issues drain me enough.  Writing about & thus reliving them, doesn't improve that.  It's not all doom & gloom.  Little is still Little, there's no holding that kid back. She has lots of high points too.  She fun and funny and crazy, like always.   And Big is in her 5th grade year.  Last year of elementary school.  (Also, I don't want to talk about, because I'm in denial  that she's so freaking OLD already!) There's been a lot of great, fun things going on with her too.  I'll try to get back on here in the next week to give you all some more of the positive stuff.  (And hopefully report that I'm sleeping again.)


Wednesday, October 09, 2013

More, (or less,) of the Same

So a super quick update.

Right after I last posted, my energy level Tanked! Plus lots of symptoms: low BP, (90/60,)  very low body temp, (around 90. Yes, i am a real life zombie.  Who knew?) Hot flashes & night sweats, (while being only 90,) extremely dry skin, hair loss, loss of appetite.... I think you get the idea.  Took a month to get in for blood work & my numbers are still good.  Of course they are. My doctor & I did discuss what could be done if this were the case & are trying a new protocol. I think it's helping, but I've been so busy, that I can't tell if I'm tired from busy or because I'm having issues. Have to give it another week or two to be sure. I suspect my symptoms were going to continue to get worse, as they had been all month. And they seemed to have improved somewhat. At least, I know better what to look for & ask about', right? (I'm working on finding things to be grateful for in every situation. I know that's not possible, but I think I can be happier, with what I have, if I can do this. Plus, great way to teach that lesson to the girls. BONUS!)

More later & sooner. No really. While a Twitter post is a bit too short, I should be able to update more if I can keep it more like this one.

Monday, September 02, 2013

Return of the Mommy (Speak)

Nothing like a little free publicity to get one off her arce & write. So, thanks to SheKnows.com & Sherri Kuhn for kicking my arce to get back on the horse again. (Even if you didn't realize you were providing that service.)

It's been awhile, (February,) since I last posted. At that time, I was in a really dark place. In my defense, that last post was written during a time in which, I was weened from one set of meds, but not yet on the next group. Proof, that regardless of what I might think, they really do seem to be helping. Since then, things have improved dramatically. (That's the understatement of the year.) I've been meaning to update, but so much has happened that it felt overwhelming. I was also busy, trying to catch up on all the life I feel like I've been missing out on.

Long story short; in April I was diagnosed with Hashimoto's aka - hypothyroid.
Since then, I've lost 25 lbs, (still have at least 30 to go). I have long periods without pain. Yes, you read that correctly, without pain. I have energy to do stuff. Meaning, I'm not napping while kids are at school, just so I can get through the afternoon when they're home. Yeah, it is like I'm a different person. As you might imagine, a lot has happened, so I have find to tell you.  Most of that will have to wait. Right now, I just wanted to let you know I'm alive & doing REALLY WELL. And that I'm back.

Saturday, February 16, 2013

Broken

We're in Tahoe right now. Everyone went out to play this morning in the snow, while I laid on the couch on my side, trying to get my body to not hurt so badly. When you have chronic pain, going on vacation might seem like a good way to relax and manage your pain. Unfortunately, if you don't have a good bed, your usual and other potential problems tend to pop up, negating any benefits you might accrue from rest and relaxation. We are staying in a cabin, with my parents and my brother's family. Normally, I would prefer to lie down on the couch in the living area. If I'm in the living room, then I don't miss everything, even if I can't participate. But with the number of people we don't have enough room for me to lay on the couch. So I'm stuck up in the bedroom, listening to everyone else. The group just headed out to a sledding area, but my stomach problems have kicked in, so I'm staying at the cabin near a bathroom.  I am so tired, of living like this. This is not living this is surviving. I am missing so much of my girls and the things that they are doing. Sometimes, I wonder if it would be better if I wasn't here. I feel like I put a damper on everything we do. We are constantly accommodating my health needs. And even with those accommodations, there's still so much I don't seem able to do. It's extremely frustrating for me to live like this, I can't imagine how frustrating it must be, to be my family. I want so much to be able  to do normal things with my family. At this point, I'd be okay with just getting to take pictures,  but as time goes on, it seems like even that is becoming too much to ask for. I don't know how to fix this, but I do know that I'm broken. I don't want to live like this anymore.

Thursday, January 24, 2013

This...

Saw my rheumatologist this week.  It was disappointing in that he doesn't seem open to alternative medicine; acupuncture. I didn't bring up chiropractic with him. I'm torn on this, I'm not having good success w/acupuncture, but I know people who do, so I was hoping he'd have insight or referrals. Also, his response was so overwhelming negative it made me wonder if he's the best fit for me.  I want to be able to get meds to help when I need them; pain pills. But I don't want someone who just wants to throw pills at it & call it good either. So after he got done ripping apart that, he did decided to change up the prescriptions I am taking. So far, I'm not real happy about this. My sleep has been pretty sketchy lately anyway, this was enough to throw it completely off kilter. Below is what was supposed to be a text to my mom this morning. It got too long, so now it's an email & blog post. I know it rambles, that's what its like to be in my head right now.
Note: 3AM is the time I was up past last night. I've been averaging 2 AM pretty regularly this last week.
_______________

3AM.  & I was wired. 

I'm calling my dr. & telling him I'm backing off of the decrease in both drugs. I'm decreasing the P & changing over, but I'm not messing w/the E at the same time. 

I feel like I'm on adrenalin (not my energy level, more like my awake level,) & any second it's going wear off & I'm going to crash. My pain level is on it too. Not just my back, my neck & ankle feel worse than that, this morning. It's like they're amped up.  Actually, it would be more accurate to describe it like, I have crashed, & I'm in that space where you can see it, but you're waiting to see where you'll feel it. 

I know it's something w/the drugs, bc my inner voice (not the nice one,) has turned itself up. And it turns out it has a crazy evil twin. I'm not hearing voices, (now i do sound crazy,) it's more like those thoughts you have; doubting/worrying yourself, well they've amped up too. I'm feeling anxiety I guess. Not in the sense of a panic, more in the sense of non-rational thoughts slipping in here & there. I don't want to detail them, or you will think I'm crazy. I think them & then immediately wonder where the heck THAT came from. I know they're not rational, so that makes me not crazy. (Right?)

I need help w/the mundane. I'm not getting it all done & I'm stressed about it. I hate asking for help bc I'm not the only one w/issues, but I am on the cusp of that overwhelmed anxiety feeling. I hate this. So maybe I'm having panicky anxiety, I just can't see the forest for the trees or something. (& now I feel like this is rambling & all over the place. Probably bc it is) 

I'm going to try & sleep now, maybe my thoughts will be less rambling after a few more hours.

Sunday, January 13, 2013

Tired

You know what would be awesome? A pain free day. THAT would kick ass. Could one of you please get on that? (I did say please.) I  actual have a couple hours this week when nothing hurt, (not all in a row, so don't get too excited.) and it was pretty nice. If I could get a whole day a week like that, I could get some shit done. A whole day without pain would kick ass. Maybe I wouldn't be so fucking tired all the time either. And maybe I wouldn't be such a bitch all the f'ing time either. Or, I'd have to blame it on something else, right?

Thursday, January 10, 2013

To Tablet or Not to Tablet...

So trying something new this time. I got a tablet for Christmas, (Nexus 7,) and I'm writing on it now. I asked for it, thinking I would be able to do more than I could on an iPad. I was hoping to be able to utilize existing software, (Photoshop,) from my laptop, and work on some of my scrapbook pages. To be honest, I haven't given it a full shot yet. Since it would be web based, I'm pretty sure I won't be able to do what I want on here. To be fair, I don't think I could do any of that type of work on the iPad yet either, or any other tablet for that matter. The software & systems just don't seem robust enough to me... yet. But I will give it a true test in the next few days.
The biggest problem I'm having with the apps is that they keep dropping me in the middle of use. If what I'm working on is web based you can see where this would quickly become an issue. (The amount of information you could lose, could quickly be extremely large.) The app I've run into it the most is on Facebook. In my opinion, they took the app for Apple, tweaked some code so it would work via Android & called it good. It's not good, it's frustrating as hell. The error I get says it's a network problem, but it means their network, not mine. (Took me awhile to figure that out. Not before I tried to fix my  not broken network first.) I've run into this particular error the most. Most other apps, I'm not running live while using, so it hasn't been as much of an issue. I realize this issue might fall with the software developer, but it's important for them to realize that if the apps people want don't work, then no one's gonna buy the tablet. Especially if there is a tablet the apps do work on, like the iPad. The second major frustration I run into is several apps for Android will not work on the Nexus 7. It speaks to the need for some standardization across the industry. If any of the players in this market want to give Apple a serious run for their money that's their  best bet. Lastly upon looking in the Android store for certain (kids games,) apps, I encountered a fairly  extensive collection of adult apps. (P0rn.) I'm not a prude, but this caught me off guard, as I've never run into something like this before. It was a good reminder to update the parental controls on my children's electronics, but I worry about the kids whose parents aren't paying that much attention. (For the record, I was looking at the American Girl Doll apps and I got American Girls, but these girls were not for kids.)
This post is actually become my testdrive for many of the basic functionally aspects of the tablet. I'm quickly becoming a fan of the keyboard, (I can swipe thru letters it provides choices for the correct word-much faster than typing & I'm actual a fairly quick typist.) I know you can do this on an iPad, but the Nexus 7 costs less than half.
I'm now using the voice function to write this piece and it's pretty good. By the time my kids are old enough to want to use it nobody will type or write anything anymore, it'll all be voice dictation. I've wanted to use voice dictation in the past, but was leery of purchasing any software as it's not cheap and reviews have indicated that the software isn't very effective. I'm definitely having to go back and tweak a bit, some of the words that it thinks I mean are definitely off base, but actually it's much better than I expected. I have an iPhone 4, so my phone doesn't talk back to me, meaning, no Seri. But when I do try to use the voice dictation feature it's not nearly as good as this nexus 7 one seems to be. (This paragraph was originally written using voice dictation. I have gone & tweaked it, so it makes more sense, but you can see what the tablet came up with on it's own, in the paragraph below.)</p>

<p dir="ltr"><i>I'm</i><i> also using </i><i>the</i><i> voice function to write this </i><i>piece</i><i> and </i><i>it's</i><i> </i><i>pretty</i><i> </i><i>good</i><i>. By the time I kids are old enough to want to use </i><i>it</i><i> nobody will type </i><i>or</i><i> </i><i>write</i><i> anything anymore </i><i>it'll</i><i> </i><i>all</i><i> </i><i>be</i><i> voice dictation. I </i><i>wanted</i><i> to use voice dictation </i><i>in</i><i> </i><i>the</i><i> </i><i>past</i><i> </i><i>the</i><i> </i><i>Bently</i><i> </i><i>reserve</i><i> </i><i>purchasing</i><i> any of </i><i>this</i><i> software to do so the software is not cheap </i><i>and</i><i> </i><i>reviews</i><i> </i><i>and</i><i> </i><i>indicate</i><i> that the software is infected I'm definitely having to go back </i><i>and</i><i> </i><i>tweaks</i><i> </i><i>is</i><i> </i><i>the</i><i> bed some of the words that it thinks I mean are definitely well </i><i>face</i><i> </i><i>but</i><i> actually it's much better than </i><i>I</i><i> </i><i>expected</i><i>. </i><i>I </i><i>have</i><i> </i><i>an</i><i> iPhone 4, so my phone doesn't talk back to me </i><i>meeting</i><i> </i><i>3</i><i> </i><i>something</i><i> </i><i>on</i><i> </i><i>it</i><i> but when I do </i><i>try</i><i> to use </i><i>the</i><i> voice dictation </i><i>feature</i><i> it's not nearly as good </i><i>as</i><i> </i><i>this</i><i> </i><i>nexus</i><i> </i><i>71</i><i> seems to </i><i>be</i><i>.</i></p>
<p dir="ltr">Big got a Kindle Fire for Christmas and I need to test that out since it uses the same platform, Android.&#160; The Kindle Fire is at a similar price point, so I'm curious to compare them side-by-side. </p>
Funny, I wasn't intending to write a review. I had actually intended to write about having a frustrating Fibro day, but I'm hurting enough to even bring my laptop on my lap well in front of me that is painful.
I saw the tablet sitting on the coffee table next to me & thought let's give it a try.  It became a review by default.  Writing this may have made the tablet much more valuable to me as I've discovered I can use voice dictation to write my blog posts. Voice dictation will mean my spelling will improve, but my grammar is going to suffer greatly.  Right now, it's taking me as much time as if I typed it to write this post.  But, it takes a lot less energy and eventually I expect it will be faster as it becomes more familiar with my voice. The jury still out on whether not I plan to keep the tablet, I'm still working on learning all the functionality. I actually downloaded the user's manual and read it cover to cover and there are still some things  I'm trying to figure out.  I'm not the smartest kid on the block, I'm not the dumbest either and the fact that I read the book and can't figure out a couple of basic things on my own, so far indicates me that there's still a lot of work for Google to do if they wanted to compete with an iPad.