disclaimer or something

A mummy-hand holding, (former) biker gang affiliating, hippie influenced semi crunchy granola mom's ramblings and reminisings on an off-kilter life

Tuesday, August 26, 2014

time to cheer and jeer

I was glad summer vacation ended this week, because my preschooler cango back to getting speech services with the SLP (Speech-Language Pathologist). He had come so far since May! Sure he still was far from talking like every other three and a half year old, but he had a "language explosion", going from under 100 words to....a lot. Again, not what he should have, which is why he is still in speech, but a noticeable growth. Yippee!
He has a new SLP, one who will actually give targeted instruction and homework (what a concept!) So I began our meeting all happy. And then.....
Comments along the line of, "he speaks in garbled jargon" made me, well, feel defeated. I told the SLP that I understand most of his jargon. Sure, top-uh-hee-oo means "take me here" but hello, topuhheoo isn't jargon to me. Its words, dammit, he just can't pronounce for shit. So she says, "yes he really needs help pronouncing words. And he really needs focused language instruction and intervention". (No shit, I think, that's why we are here. But....but...yes he needs that but crap....you say it all seriously). Yep.she again focused on his need for INTENSIVE help. I felt elated and crushed all at once. Finally, after TWO YEARS of trying to get him help,someone realizes he,gasp, needshelp cause he isquite "behind"! Yay! And yet - boo hoo. I feel his recent growth is now an un-noticeable droo in the bucket, like...a needle in a huge haystack of "he's behind" hay. Like my recent praising of his growth was overdone and not....worth it.
So then I bring up some other concerns his pediatrician, ENT,previous SLP, etc just brushed aside as "a stage" "what toddlers do". Again, I was left elated and defeated. The SLP listened and said,"whoa he really needs an OT (ocupational therapist). Finally someone realizes he needs MORE help!  But OMG he needs more help. It took over 6 months to let him see an ENT. It took 6 months (or...8?) To get him even evaluated for speech. Now he needs an OT? Must I wait till he is freaking in college before he sees an OT? I call his pediatrician (conveniently on vacation) and am told there aren't any OTs in the medical network so it will cost $45 to see one. And that the SLP must compose a letter stating his need (since he's new, this takes time so she can get to know my son). Then the pediatrician has to ok the letter and pass it on to the medical network. Then therty must ok it. Then insurance must ok it. Then the network chooses an OT for me. Being there was ONE entire ENT in all of freaking California, will I be referred to an OT in New Jersey?anyways, then the OT must ok it and tell the insurance. Then I can call and make an appointment, and due to a critical shortage of doctors and OTs, that can take 6 months.....if all the prereqs were met without trouble, otherwise I must start again from the very very beginning. Then! You know, when he gets his first visit in college.....it costs $45 a visit but they will probably be all, come twice a week!oh and sorry you can't bring your infant with you, just the 3 year old. Since my area is literally devoid of child care, I will find someone for $30 hour to care for my infant. But the OT is likely an hour or more drive away. So once I finally get help, its $45 plus gas ($15) plus babysitter ($90). $150 a visit. I WILL  anything to help my son but $150 each time is pretty damned crazy, right? Sigh.

Thursday, August 21, 2014


"OMG I have a migraine" said the Facebook status, or "yeah I'm not in the mood to chat on the phone, I have a migraine", she said. And I felt stabby. Migraine my ass.

 Ok, no two are exactly alike (so maybe the examples above were "real" migraine sufferers), but they're similar enough. And in my case, every migraine I've had is bad enough that I wouldn't pick up the phone or type a Facebook status. So I feel a little twinge of rage when people complain of having a migraine, because it's like, if it's a migraine like I get, you do everything to not do anything.

Usually, they start with an "aura", but the type of aura can vary. Sometimes, it's taste. Suddenly, foods taste "off", like plastic, or too bland, or like soil. Other times, it's vision. I don't get squiggles in my vision or hallucinations or even tunnel vision, but it's like the lighting isn't right.

Recently, I went through - nope- am still going through a fun filled migraine swarm. One had the visual aura. I was in church and it was like the light was too dim and the words too small. I struggled to read the Bible. And then as we prayed and I closed my eyes, all I could think was, yikes it is so so so bright! Ouch! so bright and my eyes are closed! Another had a new aura for me, temperature issues. I was freezing (it was 70 in the house, warm to me normally) and I put on a sweater. I took a bath in water so hot it was probably dangerous, but I still had goosebumps while soaking in the near-boiling water. I went to bed under a winter blanket. And then the next morning, it was still 70 degrees and I had ice cream for breakfast I was so hot.

But I don't always get the aura.

Once, the migraine just hit BAM like that. I was teaching a class full of children and had to run out, split second, without warning. That's illegal, you know, leaving children unattended like that, but I didn't have time to call for a substitute. I merely dashed out doors, grimacing in pain, and vomited like mad. I often vomit because the pain gets that bad. That specific migraine was the worst one I ever ever had. It hurt so much I cried but it hurt to cry. The pain was off-the-charts bad.

It's like labor (as in, giving birth). In your head.

I should know. I gave birth twice, and once, without any drugs or intervention or anything. It was...ouch. I remember when I was in triage and the nurse said, "oh I guess you really are in labor, 7cm dilation!" and I had a big contraction, I almost vomited and thought wow, this feels like a migraine in my uterus!

Anyways....Other ones are less painful, but still painful enough. Not cluster or sinus headache painful, nope, more painful, although I've had those headaches too and they suck. But migraines are worse.

I don't always get the aura, so I don't get any warning system. Sometimes, they strike at night and so I sleep through the easier parts and wake up miserable.

Just last night, I had a dream where I went to the ER with a migraine and they gave me some medication and released me. And then it came back and the new doctor came to see me in the waiting room and asked the other waiting patients, "who has had a migraine before?" and a few raised their hands. "ok then, whose migraine went away?" and the same hands went up. "Ok then, ma'am, your migraine will go away so....go home." I was livid because she hadn't treated me. And then, in real life, I woke up.

The room was dark except for the slit of light by the window which was razor-sharp and bright. MY mind felt like it was thinking twenty different thoughts, and full of white noise, kind of like when you  have a dangerously high fever. As if there were twenty different people mulling in your ear while a lawnmower buzzed and something hummed. My husband opened the door and it was as loud as a gunshot. I exhaled and focused myself...."advil. water. migraine." I feebly mumbled. I wasn't able to get out of bed on my own to get anything. I had found a comfy spot where the light was only flood-light bright. I closed my eyes and it felt like I was twisting in a circle to the right as everything else in my field of vision twisted left, except, since my eyes were closed, there was no field of vision. It felt like when you are nearly blackout drunk (yeah.....bad college memories) and everything spins, you think uh oh,  right before.....you remember nothing more.

The first advil allowed me the ability to walk to the restroom, although it was as much as a struggle as it was (here comes my labor analogy again) when I tried to walk to the restroom not ten minutes after giving birth. I felt like I was some elderly invalid in a walker, except, I lacked the walker. Suddenly, I knew what was going to happen. I leaned down over the toilet and heaved. Nothing. I drank some water and, as expected, vomited. A few times. My body shook in shivers and I tried to whimper in pain and exhaustion. I took another advil (this one stayed down) and sipped a few sips of coffee (caffeine supposedly can help migraines) and went back to lay in my comfy spot, when I realized, wait...is it....residing? Is my migraine over?

Except...rarely is the migraine truly over. After the labor-in-my-head, vice grips tightening, sirens wailing, ratchet is click click clicking (each click more painful) pain of the migraine comes the postdrome.

The postdrome is better than the migraine, yes. It doesn't hurt to touch things. The blanket on my toes doesn't feel like it weighs a thousand pounds and is made of broken glass. A nightlight isn't like a spot  light and a whisper isn't a scream. Thank God. But, sudden movement makes me dizzy and brings back the ratchet click click pain momentarily, along with that dizzy-weakness you get if you stand up too fast and your blood pressure goes wonky. Sudden changes in sound or light (someone turns on a light, the radio, whatever) does the same thing, but I can at least tolerate dim lights and quiet sounds. Heck, I can even tolerate normal level sounds and light if I ease my way into it, like a dimmer switch. With postdrome, I feel as dizzy as the worst hangover, as dizzy as when you spin in circles too many times. I feel exhausted (except I'm a weirdo who cannot nap if I tried. I can only nap if severely ill, like pleurisy or severe dysentery) so I kinda just lay there, lacking energy.

Postdrome also gives me mind fog. Not just the occasional brain fart but like....a dangerous brain fog. This most recent migraine of mine, my husband took away my car keys. No joke. He felt I would be a danger to myself and others if I tried to drive, and know what?  He's right. I don't think I'd pass the police drunk driving test. I have difficulty forming sentences or making decisions. It's aggravating cause I know I have a brain, a pretty smart one, but it's taken hostage by the postdrome.

So again for those posting "omg i have a migraine" on social media, maybe you do but I want to call bullshit. Sure, I posted "ugh migraine" today on Facebook so am I a hypocrite? Hardly....I posted it after the migraine, while stuck in postdrome. Maybe these folks also post after the fact/in postdrome or maybe in the aura stage. But don't bitch about the severe pain. Because if you can actually open your eyes (ouch, bright!), move your body (ouch, touch hurts), get to the computer/phone (whoa, dizzy), and compose a typed or spoken sentence about your pain (while your head is in the last moments of labor) then wow, you're Superman.

Tuesday, August 12, 2014

no, I didn't eat those eggs you meticuously, lovingly made for me.

As my son has another screaming,, thrashing, banging things hour long tantrum....I feel...anxiety to say the least. A few days ago, I was filled with a similar anxiety but for the funkiest reason. Synasthesia. Some people cam smell colors or whqtever, which is what synasthesia "is", but aside from thinking "whoa, trippy", I wasn't 100% convinced it existed, but thought it would be neat to have. Wrong. I realized I have synasthesia but where emotions have a taste. No joke. So my husband lovingly prepared breakfast, scrambled organic eggs with slices of artisan salami and mozarella mixed in. How lovely and "umami" and gourmet right? What a nice husband! Well my lovely husand was disappointed when, an hour later, he came out to see my plate of eggs untouched. It so happens, synasthesia got in the way. I couodnt quite exlain it to him as he'd think I was nuts. But come to find out, anxiety tastes like eggs mixed with mozarella and salami. The second I took a bite, my whole being flooded with extreme anxiety. So, not "getting" it, I took another bite as my husband carried his plate to his office to eat and work. The anxiety increased. I paused, fed a bite to my kiddos, had a sip of coffee which washed away the taste. The eggs had a pleasant taste in a way, so I took a small experimental nibble and bam! The coffee had rinsed away my anxiety and the nibble of eggs brought it flooding back. I went to swish my mouth with mouthwash, scotch, chocolate milk, potato chips, all to try and overpower any hint of "anxiety eggs". And so I thought, hmm...this just has to be nuts. But I recall hating brocolli as a kid because it reminded me of being sick, so plain brocolli (as in, steamed and unadorned, how it was served to me as a kid, or, raw brocolli) still tastes like the feeling of being sick to me. So it must be synasthesia.

Wednesday, August 6, 2014


Sometimes I blab and blog just to...blog, really. I feel compelled to blab on about nothing so here goes!
My 1 year old baby can walk!!! And the weirdest of all? So my 3 year old learned to walk at 13 months. He was creeping along the furniture and I thought hmm...I should film this, and...I film him creep and creep and holy crap he just walked two steps! So fast forward to my 12 month old. I'm rocking out to Matisyahu, while my 3 year old begs for "Queen song" (Bohemian Rhapsody his favorite song) and my 1 year old is bopping his head and hutt...omg so cute! I grab the camera, press record and...dammit! He stops dancing! But I keep filimg, trying to goad him into dancing. The song winds down and I go to click stop and....what a coincidence, he walks three steps. His first steps ever. On camera. Holy moly.
So I was explaining the handicap symbol to my older son, who with potty traning, is obsessed with potty triangle. Quick diversion- potty triangle refers to me teaching him shapes. Oh look, on the bathroom door is a woman's dress oh wow it is a triangle! So...since triangles are his favorite shape, and he is far too excited...err..obsessed...with his ability to control his bladder, its all about the potty triangle. Shopping at Target? Mommy must take him as we walk in. Then daddy. About to walk out? Repeat! Walking towards the bookstore? Double the potty triangle! Anyways...so some "potty triangles" feature the handicap symbol which he inquired about. I explained it shows that the place is friends an good helpers with those who can't walk, hear, or see very well. So....fast forward to last week's grocery trip. We finish everything and wheel the cart...past the handicapped parking spaces. So he reaches past the cart, towards the parking spot and says out loud "sorry you're broken".
Sorry you're broken. Freakin' awesome kid. He's my little empath.
So as blogged previously, I almost ran for school board. I mentioned to the journalist how I hooe to get out in the community. Its true...I wqnt to! But I'm a socialization/clubs/social crap failure. So I am trying....trying...church. I like my church so far, I really do (yay me!) And I even joined a women's Bible study group this week. Ok...if you're a different religion or none at all, please don't shut your ears. I couldnt care less what you believe. Well ok I care in that "cool for you" way but I won't ever pressure you to believe in my way of things. Anyways...I will attened whenever my uber busy husband can wqtch the kiddos. Most people there were old. Just like with joining a local womens club of all blue hairs, I kinda stixk out except there are three "young'uns" but blue hairs are the majority. One lady is 79 ad I swear she looks 60 if that. No joke. I want her youthful secrets! And another, Evelyn, warmed up to me and is just the sweetest. I also went to a local pregnancy advocacy center and hope to voluneer except, no kids allowed. I can't find anyone but some ciggarette smoking lady (nuh uh) to watch my baby. Unless I want to pay $39 an hour for baby care while I volunteer for free. Sorry, no. When I can only find teqchin jobs for $9-19 an hour and it requires 6 years of college and you, a high school grad, want $30 an hour....f*** off. Anyways...my point (do I have one?) Is that I hooe to find a way to volunteer. The place has been on my mind for a year. I can't get them oit of my head. I may sound all..weirdo..but I'm being led to volunteer there. I can't explain it. My husband supports it but is kinda like wtf...but yeah. I don't even know how I will find time to volunteer or what I will do to help, but I will find out somehow, rigth?