Status: Health, Winter 2016

I think I'm writing again.  (Lord knows I need to do something different.  What I'm currently doing isn't working.)

I feel like  I've been more or less on the brink of a nervous breakdown since before Thanksgiving. (Dramatic much, why yes, how did you know?)  Little things are helping keep it at bay, but they're sandbags and the levy wall really, really wants to break.  If that happens, I'm not sure I can do much to keep the flood out of the house.  If you know what I mean.

For the first time in 3 years, I'm actually doing pretty well physically, for winter.  A real surprise considering we're in an El Nino year.  What with me being the delicate flower I am, and the damp & cold that El Nino waters bring I would've predicted major walking issues.  So far, I'm holding it together.  I'm not thriving by any stretch, but I'm walking on my own & my family's existence seems to be flowing fairly well.  Most would call that a big win. Considering how low I've set the bar, you would think, I would be part of that most; but there's a lot of things conspiring to push me down & it's hard to manage it all.  In Other Words, I'm feel like I'm losing the battle.

DaddySpeak started a new job last year.  He was at his last place of work for almost 10 years.  That's an eternity in Silicon Valley.  Because his company is considered one of the best places to work, (in the world,) no one asks, "What's wrong with you?  Why have you been there so long?" which is how ambition is typically determined here in Silicon Valley.  It was an enviable position to be in, in my opinion.  But he'd more or less maxed out there.  If he wanted his job to evolve he needed to leave.  At least for a while.  (It's also not uncommon here to leave so you can get the title you aspire to, and eventually go back to your previous company.  They couldn't promote you title wise because of BLAH, BLAH, BLAH... but now that you have experience at that level we can hire you back in that position or above.  Yeah, I know makes tons of sense. Lame, I agree, but a relatively common practice.)  So, our insurance changed for the first time in 10 years.  Most of my doctors were not on this new insurance.  We always sign up for the PPO plan so that if a doctor or two I've been going to isn't on the plan, I don't have to change up everything all at once.  Which explains why I suddenly had to change up ALL my doctors at once.  The short version is; I spent months trying to get new doctors in line.  And now that I've done that, they changed to OUR OLD PROVIDER. I kid you not.  In the meantime, I just finally got set up at this pain clinic.  I was actually super excited because I felt like these doctors were way more in line with my approach to getting better. Not just managing my Fibro. (The Fibro doctor I've been going to keeps me in drugs.  He isn't open to anything that isn't traditional Western Medicine.  I think I can do better, but was nervous to leave him. I felt like the timing was actually good.  This was the universe telling me it was time to move on.)   However, I've since found that I can't seem to get evaluated to get that treatment at this new place.  Seriously.  It took me 4 months to get all my forms, files, etc...to them.  And this clinic won't talk to you until they have your past history in place.  Finally, all shored up.  Got into my first visit with the main doc.  Looks good, going to be evaluated by several people in house to access my current needs; and BAM.  Red light. They were supposed to call me & never did.  I called them.  They'll get back to me with the doctor's orders.  Nothing.  I made a couple more calls and then I was back in for my follow up with the main doctor again.  (Scheduled at the end of my last appointment, but a different desk/person in the clinic.)  He apologized.  Said he took responsibility for the misconnect & that we'd get moving now.  Still in the same boat.   I can NOT seem to get on the phone with the scheduler.  I've been playing phone tag with her for literally 4 weeks now.  So much for pain management.  In the meantime, as expected during the winter, I've been gradually getting worse. I'm at the place where I've started to get migraines again. That's when I know things are bad.  My sleep is crap.  I can't seem to follow asleep till 3:00/4:00 AM.  I will sleep a good 7 hours once asleep, so that's progress.  The problem is that most of the people around me, are NOT functioning on Hawaiian time in California.  So I'm on swing shift.  I sleep for 3 hours, get up, get the kids off to school, go back to bed.  I don't get much done, but I do get rest.  I've learned through the years, to grab the sleep I can, when I can.  If I don't sleep while they're at school, I'm a mess around 4:00 PM.  You know, right in the thick of carpool.  That's safe, NOT.  So, yeah.

Things are a little better in that, the girls make their own lunches at night & are responsible for themselves in the AM.  That doesn't mean it isn't chaotic, it just means I don't have to actually leave the house with them most days.  (That's a win in my book.)  When I do, I usually throw sweats over my PJs & then back to bed.  Girls are also responsible for dishes, dogs & laundry these days.  We're still working on that, but even when they just do a bit, it helps.

So that's where I'm at in my current medical journey.  No where really.  Fibro is maintaining. Hashi's is maintaining.  (Still gaining weight, slowly, but surely.  That's another post for another day.)  And mostly, we're all holding our breath, hoping there isn't some major catastrophe that puts me back into a completely overwhelming downward spiral from which I need to get more serious help for.

More later.  I hope.

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.)

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.