meds

Sudafed Is My Gateway Drug

I keep coming to my blog wanting to write something.  Something cute and fluffy with cute and fluffy things in it.  Like a post about my dogs and cats and how cute and fluffy they are.  Well, make that dogs and cat.  Because the other cat may be cute and fluffy but she’s dumb as a post and I’d rather she was stuffed and sitting on my fireplace mantle, but since she’s Bil’s cat, that hasn’t happened yet.  Nor have I fed her to the local coyote pack, although I’ve been sorely tempted on more than one occasion.  But then Bil would get all whiney about how I killed his stupid cat, and blah blah blah… so, she’s still alive.  For now.

Where was I?  Oh right.  Cute and fluffy.

Yeah, not feeling so cute and fluffy. Well, maybe fluffy, but I totally blame the local bakery for that.

I’m like my own version of the seven dwarfs, lately.  Bitchy, whiney, sneezy, wannabe doc, fluffy, zombie, and doped up.

And all I really want to do is whine about how hard this parenting gig is, right now.  We’re starting to rack up frequent flyer miles at our local ER.  And you know it’s bad when the doctors look at your kids chart and start discussing your opinion on possible treatment options.  I’m still waiting for my medical degree to magically appear in the mail.

Remember how, before you ever had kids, people would tell you how hard it is?  And you’d look and them and think “ZOMG…shut up and get over it.  It’s a kid.  How hard can it be?”

Yeah.  Totally eating crow now.

The universe thinks it’s funny.  Me?  Not so much.  I find it’s sense of humor rather lacking, these days.  Along with the amout of sleep I’m getting.  Which tonight I can fully blame on the Sudafed I took before bed.  That stuff makes most people drowsy.  You know the whole ‘don’t opperate heavy machinery or you might poke someone’s eye out and then you’ll be sorry, but it won’t be our fault because we told you not to do it right here on the box’ warning?  Yeah, doesn’t apply to me.  Apparently, Sudafed jacks me right up.  Like RIGHT up.  Like holy hell I haven’t slept tonight and WEEEEEE I feel fucking awesome jacked up.  So… uh…yeah, not taking it before bed EVER again.

And I probably shouldn’t be allowed to blog while under the influence of sinus cold meds either.

I don’t see a warning for THAT on the fucking box.

Crazy Going Slowly Am I

Remember that song we sang as kids that went

“I am slowing going crazy.
1…2…3…4…5…6.. switch.
Crazy going slowing am I.
6…5…4…3…2…1…switch”

Yeah, that kind of describes my life right now.

Last night Vista finally did what I’ve been afraid she was going to do for a while, and aspirated on her meds.  That means her meds went into her lungs rather than into her stomach.  That is a bad thing.  A very, very, very bad thing.

And let me tell you… nothing induces panic faster than watching your kid turn completely blue.  She wasn’t able to make any sounds,breathe, or cough, which meant her airway was completely blocked.

I still get shaky just thinking about it.

I was able to get her breathing again with several abdominal thrusts, then bundled her up and took her into the hospital for a quick check.

(Let me insert a PSA here encouraging you to make sure you’re up-to-date on your First Aid and CPR procedures.  It can, and does, save lives)

Luckily she didn’t seem to sustain any injuries from the incident, so now we’re just watching for signs of a bronchial infection.  Wheee!

The biggest implication of this whole incident, though,  was that it means giving her liquid meds is no longer an option.

The risk of her aspirating again, overrides the need for the anti-seizure meds.  Which is saying a lot.

So I spent the day on the phone with Vista’s neurology team trying to figure out what to do next.

We went in and met with the therapist who is working with us to teach V to take her meds.  She said that Vista is ‘beyond her expertise’, and so we’re pulling child psychologists onto the team now.  The word ‘Asperger’s’ was tossed out and the need for an assessment to see if that’s what we’re dealing with and the reason we’re having so many challenges was raised. So that’s a third person who has suggested V might be Asperger’s.  We have a date set in November, now, for her to be screened for the Autism spectrum.  I guess we’ll see what they come back with then.

But that still left us with the issue of what to do in the mean time.

We went over every possible option with the team, including taking her off meds completely.

By the 5pm it had come down to 2 real possibilities.

Putting an NG tube in or switching her meds.

Neither option makes me feel warm and fuzzy.

For now, I think we’ve decided to attempt to switch her meds.  We’re going to try a med that has a pill I can crush and make into chocolates, like I do her other pills.

The med they’re considering right now is phenobarbital.  Barbiturates FTW!  I’m pretty sure my 3yr old will be a full blown druggie by the age of five.

I’ll find out tomorrow morning what the official decision from her neurologist and we’ll make the switch.

… Crazy going slowly am I.  6…5…4…3…2…1…SWITCH.

 Crazy Going Slowly Am I

Reality Can Blow Me

Every Wednesday morning, Vista and I jump into the truck and head down to the Parent Link centre in town for our weekly therapy group.

It’s an opportunity for her to connect with other kids and work on her social, motor, and sensory skills and it’s a chance for me to connect with other parents of special needs kids.

In the past month, we’ve added a bunch of new families to our group, as many of the kids from the spring group have moved on to preschool or kindergarten.

Many of these new parents are where we were two years ago.  No diagnosis.  No support.  Only the rock solid knowledge that there is something just not quite right with your child.

It’s a difficult place to be.  I know.  I remember.

With all the progress she’s made in the past few months, it’s easy to sit back and enjoy a sense of semi-normalcy.

Until, of course, reality butts in.

====================

We finished up V’s bottle of meds last night, so this morning I opened up the new bottle we had just picked up from the pharmacy.

I drew a syringe full and looked at it.  Hmmm…. that’s not right.  Vista’s meds are dark red.  This stuff is almost clear with a slight tinge of pink.  Was there water in the syringe that I hadn’t noticed?

I squirted the meds down the drain, grabbed a new syringe, checked that it was clean and dry, and tried again.

Still clear.

*shit*

I paced the kitchen waiting for the pharmacy to open.

Watching the clock.  Mentally calculating in my head how far I could push the delay in her meds and still leave enough time for 12hrs between her doses.

I finally got the pharmacist on the line.  And found out they had switched the brand of her meds.  They couldn’t get her normal ones, a problem at the source, no longer able to order the old brand, so they switched it to a new brand.

And. Didn’t. Tell. Us.

Shouldn’t be a big deal, right?  Only it is.

Each brand is formulated differently.

And that means switching brands in anti-seizure meds can be like yanking them off old meds and suddenly starting new meds.  Which?  Can cause major seizures.

I’ve spent the morning on the phone with pharmacies, trying to find someone who carries her old brand.

I have a call into our Neurology pharmacist asking what we should do.

I called our Neurology nurse and asked if she thought it might be OK just to go with the new brand (she confirmed that it was definitely NOT OK and that I needed to talk to the neuro pharmacist to see what he recommended).

I’m frustrated.

I’m angry.

My nerves and feelings are raw.

I’m back to grieving the child I thought I was going to have three years ago.  The one that was healthy.  The one that didn’t need three doses of anti-seizure meds every day to keep her alive.  The one that didn’t need therapy.  The one that didn’t know the inside of the children’s hospital like the back of her hand.

One day, maybe I’ll get to the end of that grieving process.  But not today.

Help. I needz it.

As Vista gets older and is able to communicate more, we discover more and more about her and the weird and wonderful ways that her little brain processes things.

Our latest discovery is the fact that consequence or cause and effect part of her brain doesn’t work. It’s just not there. She has absolutely no grasp of one thing affecting another. You cannot use ‘if/then’ statements with her.

Think about how much of our parenting is based on consequence reaction.

‘Stop hitting your brother OR you’ll get a time out’
‘Eat one more bite of dinner THEN you’ll get desert’

or our personal favorite

‘If you take your meds like a big girl, THEN you get *insert anything here*’

Vista’s comprehends none of it.

And we’re not sure if that’s just the way it’s going to be or if it’s something we’ll be able to teach her.

Right now, we suspect that may just be the way it is.

So dear internet people, I, once again, need your help.

How do you discipline a child who doesn’t understand consequences?
How do you cajole a child into doing what you need them to do when they don’t understand ‘action/reward’?

Help. I needz it.

Here We Are Again

It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep.  I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in.  She barely stirred as I walked with her down the hallway.

And now we wait for the chorus of “Oh man, your three year old naps?!?  You are so lucky!!”

But right now, I’m not feeling really lucky.

Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.

She had two seizures over the long weekend.  One on Sunday while she was out with her respite worker, Dorothy and her family.  Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.

She seems to know when she’s going to have them as she always manages to be sitting down when she has one.  On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure.  I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it.  But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.

So here we are at today.  She slept for 14 hours last night after her seizure.  Which is how we confirm if it was a significant seizure or not.  Minor seizures don’t affect her.  But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.

And now she’s sleeping again after only being up for two hours.  Which means I probably missed a seizure while she was outside playing.  That’s three in three days.  And that?  Is not a good thing.

So here we are again.  Waiting for a call back from her neurologist and probably playing the medication game.

Part of me wants to sob in frustration.

Part of me is worried about the effects these seizures might have on her speech and motor skills again.

Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.

But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.

I Really Hate It When I’m Wrong

I woke up this morning at 8am.  Which counts as sleeping in for me.  I should have been able to bounce out of bed and hop in the shower.  Instead I slowly dragged my ass out of bed, thanked the magical furnace for the fact my room wasn’t freezing for a change, and resisted the urge to start banging my head against the wall when I realized V was awake and wanting to get up.

That urge to bang your head when you’ve been awake less than 2 minutes is NEVER a good sign.   But it’s a big sign for me.  You see, I live in this fantasy world.  A world of happy fairy dust.  That would be the same world where I convince myself that I’m feeling so great I don’t need my anti-depressants anymore.  Because, I’m doing better again.  I obviously just needed more sleep.  I wasn’t depressed after all.  And so I don’t need to take that little pill once a day anymore.  Because I. am. doing. AWESOME.

Day One
Feeling great!  I’m on top of the world.  Told you I didn’t need those stupid pills.  Just more sleep.  Sleep is GREAT!  I’m GREAT!  YAY ME!
Day Two
Hmmm… seem to be having a bit of an off day.  Maybe I’m coming down with something.  I just need some more coffee.  Oooo… and chocolate.  And maybe some Skittles.  Cause who doesn’t love Skittles?  And maybe just a bit more coffee.  Definitely coming down with something.  That must be it.  But I. am. GREAT!
Day Three
You want me to get out of bed?  Are you fucking kidding me?  And if those god damn dogs don’t start barking I’m going to turn them into to fucking fur coats.  Bark collars all around.  That’ll fix you little bastards.  And those fucking cats need to shut the fuck up.  Oh great.  No cat food.  Dammit.  Compose note to Bil telling him he better bring cat food home or I would chop him into little pieces and feed him to the cats.  Cause really?  How fucking hard is it to see we’re getting low on cat food and get more before we completely run out and the cats are meowing, meowing, and they won’t shut the fuck up and if his cat tries to chew that god damn plastic bag one more time I’m going to seriously shove my foot up her ass and use her as a slipper because she’s not good for much else.  Re-read email.  Edit it to ask Bil to pick up cat food on the way home.  Hit send.  Make Vista some breakfast.  Ego waffles is about all I can manage this morning.  Breakfast of champions.  Someone give me a ‘Mommy of the year’ award.  Put on Super Why for V and check the clock every 5 minutes to see if it’s time for her to go down for a nap yet.  Get pissed off and yell at her to pick up her crayons after she throws them all over the room.  Get pissed off and yell at her after she brings me her sippy cup and demands I take the lid off for the 18th time.  Get pissed off and yell at her after she refuses to let me change her diaper.  Get pissed off and yell at her after she goes to her blackboard in the kitchen and starts running her fingernails  down it and wont stop.  Get pissed off and yell at her after I tell her to get the fuck out of the kitchen and she lays down and throws a temper tantrum and I pick her up and bodily move her to the living room and slam the gate to the kitchen closed *insert a lot of screaming from both of us here*.  Realize I am completely losing it.  Make her a bottle and tell her to go to bed.  Freak when she tries to climb into my bed.  Pick her up, put her in her crib with her bottle, close the door.  Go to my computer, turn on Twitter, send this tweet

mommymeds I Really Hate It When Im Wrong

Put the computer down, go into the bathroom and take my little pink pill.  The one that makes me sane again.  Then cry, and cry, and cry.  Cry for being stupid enough to think I could go off of them.  Cry because I hate having to take them. Cry at the realization that this is not going to change.  Cry.

Cry because it only takes 3 days to prove how wrong I was.  Three days to go from happy, great, awesome, loving life, to ‘I wonder what would happen if I just took the whole bottle’.  Yeah.  Three days between sanity and the fact I should probably be in a padded room.  Three days between peace, calm, and happy harp music, to a rage so fierce I don’t know where it comes from and it scares me.

I woke up this morning and thought about blogging and wondered what to write about. I realized I had nothing to say and decided, maybe tomorrow.  Then my brain imploded.  If I could have picked my own topic, this wouldn’t have been it.  I don’t like telling the world that there are days when I’m a crappy mom and a shitty wife and just generally a miserable person.  I don’t like waving the “I take meds in order to pretend I’m somewhat normal” flag.  But I do it because I know I’m not the only one.  I know there is going to be someone else that reads this, goes to the cabinet, takes their meds, and realizes that *they’re* not the only ones.  And that’s why I write.

PS. Bil, could you pick up some more Halloween candy on your way home?  I may have cleaned out our stock of Reese peanut butter cups and Oh Henry bars this morning.  Sorry about that.

The Pit of Despair

Westley: Where am I?
The Albino: [raspy voice] The Pit of Despair! Don’t even think… [clears throat]
… don’t even think about trying to escape.

~ The Princess Bride


The other day Insta-Mom put up an amazing post about her struggle with depression.  It resonated in a huge way with me, because just the night before I almost had a panic attack when I tipped my pill bottle over and the last pill fell into my hand.  Luckily the new pills were already ordered and just waiting for me to pick up.  But the panic I felt at running out of my depression meds was palpable.

meds The Pit of DespairI have no recollection of when my depression set in.  I honestly have no memory of not suffering from it.  But my teenage angst was more than just angst.  It was a pit that I was having a hard time finding my way out of.  I contemplated suicide many times.  I was about 16 I was finally diagnosed with dysthymia.  It’s a low grade, long lasting depression.  My parents were horrified.  Absolutely beside themselves.  I was warned not to tell anyone about it.  So of course I told everyone.  And I’m glad I did.  It’s no longer something to hide, to be ashamed of, to pretend doesn’t exist.  Because it does exist.  And it can be managed.

Quite often I can manage it without meds.  And I did so for years before I had Vista.  Now, though, I need my meds.

Without them I become someone I don’t recognize.  I’m angry.  I have a short fuse.  I start having panic attacks.  I become a bit neurotic, quite frankly.  I don’t like that me.  Not at all.  And all those things don’t help me to be the mom I want to be for my daughter.

I know this too shall pass and eventually I’ll wean myself off the meds again.  But for now…

As I’ve gotten older I’ve realized that it’s OK that I suffer from this.  I’m able to cope with it.  And I have supportive people around me that let me know when I’m not doing a good job of that (because quite often when you’re depressed you don’t realize it).

So every night, before I go to bed, I take my dose of happiness.  And I am thankful that such a thing exists for the times when I really do need it.

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