Wednesday

June 20, 2012

TODAY has been a good day. I woke up feeling like death, like my blood pressure was low and I would faint and vomit, but all went well at the end of the day. I haven’t been bombarded by suicidal thoughts, I went swimming for an hour, AND I designed a “50th Wedding Anniversary” invitation card for one of my dad’s clients!

I don’t like making invitation cards for his clients. They always want to muddy up the card by adding all their kids’ names (and they’re hispanic guys, so you know that’s usually a lot) and fifty Hail Mary’s and Thanks-Be-To-Jesus prayers on there. Seriously, just invite people! It’s an invitation card! Give them the time, place and date and maybe throw in a “thank you” or “thanks to our kids for putting up with us” or “thank god we’re still married after fifty years; it’s a miracle”. That’s it! I’m proud of being Latina, but damn some of these old-school Catholic country-latino folks’ ways get on my nerves!

It’s tacky and embarrassing guys! You’re messing up my design with all this other mess! But we need the money to pay the light bill, so I did it. I just did it and if felt good just getting it done despite the anxiety. I did it in just three hours too! That’s a feat for me. I’m all “spaced-out” half the time.

****

Perfectionism and the Anxious Neurotic

One thing I had to learn from my Ex-Young Therapist is that I need to just get things done without obssessing, especially when the time calls for it! I’m a perfectionist, and despite what I was told about employers loving it when you say you’re a perfectionist, I can tell you perfectionism–I mean hardcore perfectionism–is torture! It is self-sabotage and self-harm at its finest!

A perfectionist mentality maximizes your anxiety, and if you’re mental like me, that’s a lot of anxiety, which leads to less productivity because you end up lying in the ground all catatonic-like thinking you’re having a heart attack or an aneurysm, which makes you not want to do anything anymore. “I can’t do anything right because I can’t do anything perfect!” Mouse says. Well, no shit Mouse.

So today, I set aside my perfectionism, and instead of  trying to make the card look really good, I just tried to make it “somewhat good”. And I got it done! It’s not for me anyway! It’s not my pet project, my baby, my ultimate design. It’s a damn invitation card for country folks!

****

Drugs Once Again

I took this picture bellow. It’s a picture of my current “meds” , which reminds me of the argument I had with Mr. Mackey last night. He kept telling me to remember about the drugs and alcohol and I said, “I got it, geez. Am I boozin’ right now? NO! There are wine, vodka and whiskey bottles in the kitchen and I’m not even touching any of it. You don’t have to keep telling me!”

Then I got angry.

“Hold up Mr. Mackey, just hold up a second. If drugs are so bad, why do these licensed doctors give me so many?! I know Mr. Mackey. I know they’re the tested and approved drugs and all that, but why did the psychiatrist want to ADD Risperdal to the mix when I told her about the weeks after the overdose? I mean on top of everything Mr. Mackey?! Hmmm? I said no to her Mr. Mackey. I said no. I mean, I was barely getting off the Wellbutrin then and I know, I should’ve told her, but you can’t even contact her! You have to ‘go to the emergency room’ if you think one of these drugs is killing you or if you think you’re gonna kill yourself. And that emergency room is filled with like a hundred and fifty people despite the maximum capacity being a hundred. And some of those hundred and fifty are wounded with blood and guts and whatnot! But anyway, I said, ‘I just… I think I need to go to the hospital, but maybe not right now. Uhhh, no, no. I’m not right now. I’m not going to overdose again. I’m not sure. I mean, yes right now I’m ok. I’m sure I’m not going to try right now, this very minute, but I’ve been flipping so much. I just don’t want another drug is what I mean.’ So that’s what I said to her Mr. Mackey. I was being my own advocate, I think. Is that decision mmmmmmmkay? Is my decision to stay on what I’m on mmmmmkay? I don’t know. I really don’t Mr. Mackey. Mmmmmmkay, now what do you think?”

Mr. Mackey left, didn’t even answer, just blinked with dumbfounded eyes and floated off. Poof. Flew out of my bedroom window, high above my roof with his big balloon head.

“Mr. Mackey?”

********

Sometimes I do think that since I started the Fluoxetin/Prozac–became a part of Prozac nation a month and a half ago–the “depressive symptoms” have improved, well some of them. I don’t even know what I mean by that. That’s how ambiguous these things are. I mean, I have more energy overall, I think. I can get out of bed much easier, but that’s still not easy you still wake up feeling hopeless, having panic attacks and feeling nauseated.

The Wellbutrin could’ve been doing a better job. Doesn’t that name sound funny, like it’ll make you “well”. Then again, I’ve just been bat-shit-crazy  bouncing off the walls going from the depths of hell to the highs of heaven in ways I can’t even describe. I have energy like I’m on crack! I hardly have an appetite. And I’m not sure I like that saying “bat-shit-crazy”. Bats aren’t shitty and they’re not crazy because don’t have such a complex psyche as we do, unless there’s something we don’t know about them and they’re secretly plotting to take us down.

But anyway, how would I be able to measure the efficacy of the “meds” since I don’t get to talk to the psychiatrist until the end of July? And besides, she never does any proper evaluations or anything. Plus, summer has come along! And my body almost always reacts kindly to the Sun or vise versa. And my mom got a janitorial job at a local gym, so I’ve been able to swim more regularly there. Here’s the thing, I was bouncing off the walls five-six-seven weeks ago to the point where I was going to put myself inpatient at one of those horrid state hospital wards. I’ve made it thus far though. The ride’s been bumpy, Himalayas bumpy, but I’m here.

I’m still feeling generally unstable though, so I don’t know. I’m scared.

Shit, considering how this year’s been thus far, considering I still don’t know how Monkey Man L–one of the closest persons to me ever–died and I haven’t been able to let that go, considering the increment of my feelings of worthlessness, considering the immigra–well you get it–considering all that and more, I think I’ve gotten a handle on it as much as I can. And though my anxiety is still sky-high most of the day everyday (hell, it seems to be worse), I think I’m alright today guys!

I’m chip-chip-chip-chipper! haha.

I currently weight 46 pounds, that’s roughly 21 kilos. Here’s a list of the drugs I’m on:

  1. 40mg Fluoxetine/Prozac – A fairly potent Selective Serotonin Re-uptake Inhibitor. Those are the white caps with the little dashed lines. The reason why I have two different kind is because one is a 10mg (I was initially on 20mg, then the psych decided to up it to 40, so I now have the 20mg. It all adds up).
  2. 400mg Carbamazepine/Tegretol – These are the little round yellowish-beige colored pills with the orange circle in the middle. They were initially for the neurological pain I started experiencing two years ago after I got the Bell’s Palsy for the second time and for he third time in January of this year. Oh, snapples! I never got to writing my Bell’s Palsy Part II did I? Hell, I think I’ve promised too many “Part II’s”. I need to stop doing that. Oh get this though. Carbamazepine is an anti-convulsant, so it helps reduce epileptic seizures, yet it’s used for neuropathic pain which is what I have on my face, BUT… BUT… get this: It’s also used as a mood stabilizer! So, it’s of label use is for bipolar disorder. Am I getting a “two for one deal” here. It doesn’t seem so. It seems like this shit my be making my moods flail around and flagellate my soul more?!  (You can read Bell’s Palsy: Don’t Fight It, Just Be Part 1 here)
  3. Drisderol LF 50MU – That’s the green one. This one is actually for the Osteogenesis Imperfecta-OI (aka Brittle Bone Disease, er, Condition). It’s actually a new drug that doctors are trying on patients with Osteoperosis, which I also have due to the OI, but they said it should help. It’s essentially just high absorption vitamin D.The genetecist and the orthopedic doctors discovered that my bone density has gotten even lower since I broke my arm in February. Got, it’s been five months already! We’re already halfway through the year. Anyway, Drisderol is what I take only on Wednesdays: “One capsule by mouth once weekly for three months, then twice a month for three more months.” Wednesdays are the days I designated for the Drisderol.
  4. I ran out of Caltrate and fish-oils but I’m still taking B-12.
Meds

Wednesday’s drugs, mmmkay.

addendum: Oh at the pool today, two old ladies asked my mom how old I am. I was in front of her. Really? I know I’m tiny and use a wheelchair, but I’m not mentally retarded or deaf, well, I’ slightly deaf and mental, but still, ASK ME, DIRECTLY! I used to get really upset when this happened but now I only get mildly upset. Sigh. Ignorance is everywhere.

addendum 2: Speaking of Bell’s Palsy, I got the strangest search term today — “Fiona Apple Bell’s Palsy”. Weird. I don’t think she’s ever had Bell’s Palsy but then I wouldn’t know, would I? Oh well, at least I didn’t get anything about a “hairy Hulk” or “girly Avengers”!

Much love from me and the Mouse, or just twice the love from me, a much more chipper Mouse!

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Life is beautiful, it’s precious, it’s [insert other euphemism]. It is the only one we know we’ll get. So why waste it? Why throw it away?

Sure, there are tsunamis that claw over, killing hundreds of people and hurricanes and tornadoes and earthquakes all leaving ravage in their wake; there’s disease and famine, and worst of all, the man-made stuff–if you don’t count some of the natural disaster stuff being partially an effect of some of the man made stuff.

But still, why throw it away?

I have often wondered “How does one get to that point?” of taking your own life, of constantly being bombarded by thoughts of suicide. I wonder about this, even when I myself have been there countless times. So I can only imagine how incomprehensible it maybe for someone who’s never dealt with chronic depression and chronic thoughts of suicide like I have.

I say take this as a trigger warning, please: I will refer to suicide a lot in this post. Read the rest of this entry »

The Rapper

March 13, 2012

Note: This post isn’t really all about a rapper; it’s a rant, a bit of angry rambling even. But I’m settled down now, really. I’m settled, so much so that I can focus on typing with my (currently) one useful hand.

Rant commences now…

(Just a heads up.)

Ahem.

Ok.

So there’s this chick who’s in a jazzy, hip-hop trio from the Rockies terrain. Let’s call her K. Miss K is the MC/beats-maker of the three; there’s also a saxophone player/soulful singer and a live drummer. She’s about two years younger than I am and also has OI. She’s also nearly deaf in one ear, but not nearly as deaf as me–hearing loss is a common thing with us OIers. I think Miss K is also type III but I don’t know, she could be type IV (she uses a wheelchair like I do but looks like she may be an inch or two or three taller and that’s not saying much). And get this, she also studied audio engineering and music production (yeah), only she went to  a four year program that offered a B.A in it. I went to a two year program then transfered to a four year university to complete a broader study in media arts and whatnot. The similarities are just wonderful.

Anyway, I’ve never met her in person. I’ve only chatted with her on Facebook. After all she’s from one of the Grand Canyon states and I’m down below in the plains of larger-than-life-Tejas. We “met up” in one of those rare coincidences. I don’t even remember now. But as it turns out, L. knew her from years ago when his godfather would take him to national OI conventions. What are the odds? When she came up in one of our conversations, L. was the one that told me what she was going to school for which prompted me to ask her, and thus, sparked a mutual connection.

I finally got on Facebook yesterday and there she was telling me she’d be in Houston today for a performance before heading to Austin for SXSW–a four-day long music and film festival–and that she wants to meet up.

“Hey, I’m in your hood! Let’s meet up!”

I really want to meet her, so I hastily replied by saying I’d do my best to make it out tonight (I even forgot to ask if there’s a cover charge for the show).

**********

Yesterday evening I asked my mom if she’d give me a ride (I don’t have easy access to transportation). I earned a little bit of cash from my brother for another favor I did this past weekend and I offered to pay for gas with the little I have. She said she would. Problem is, I’m not sure I wan’t to go. I don’t really. I just want to meet her.

I keep thinking if I had my own means of transportation then situations like this would be easier. I could just drive up there after the show, go to some quiet cafe to meet her and drive back home. But I know, I know “maladaptive, wishful thinking”.

I’m already dealing with a lot of anxiety. I just started Sertraline last Wednesday, even though I’ve had the script for over a month, and it has me on edge. Being in a crowed right now would only make me reach my peak. Just thinking about it makes me tremble. I know because I’ve put myself in situations like this before, situations where I have to wait in a crowd in a rough side of town with nobody to talk to but my shivering, shriveling mind. Sure, there are people to talk to, but a shivering, shriveling mind doesn’t see that.

Besides, my ears can’t handle that level of noise anymore. It’s one reason why I’ve avoided shows the last two years. And who would I invite on such a short notice? I can’t push myself around with a broken arm. I’ve hardly talked to anyone since I’ve been back from Florida, not even L. I already asked L bit he’s in a worse mental state than I am. He’s not picking up these days, and when I text, he tells me to leave him be. I could ask B., a good friend and all around great guy, but then again I don’t want to talk to anyone.

“Hey how you been? How’ve things been?”

“Good. Good. Well…”

Nah, I’m not up for that.

People don’t want to hear it. If they’re your friends they will, you may say. But there’s only so much they can take at a time. I just hate being a downer. Besides I tend to be an introvert and keep my feelings to myself, even in the presence of a close friend.

If I go, they may see my grimace. Sure they may also see what I have of a smile. Oh no, they’ll see my crooked smile, my palsied out face. I look like a grinch not being able to smile.

**********

This morning I was at the hospital with my dad. I had an appointment with the geneticist today. The thing about these community hospitals is there’s always a really long wait and you only see the doc for about fifteen minutes–turns out my bone density is very low, but more on that later. So we eventually get called in and as the doc finishes up his final remarks, he adds, “Are you still seeing psychiatry?” I guess he must’ve read it in the charts. I only started “seeing psychiatry” there in December, though I have been seeing psychiatrists off and on since 2008.

“Yes,” I reply.

Then out of nowhere–no, no, right behind me–my dad makes some snappy remark. But even with my hearing aides on, I couldn’t make it out clearly. I was still in a bit of shock from the doc’s unexpected question. Whatever my dad said must’ve been a joke ’cause everyone chuckled. I chuckled too, instinctively and half-heartedly. The awkwardness in the air filled my lungs and I wanted to gag. I felt so piercingly uncomfortable. There was another doctor in the room, one I’d just met. Too much for one morning.

Later, we were in the car leaving, and I asked my dad what it was he said.

“I told the Dr. ‘but she’s crazier than ever,'” he replied.

[insert laugh track]

“Oh. ha. ok”

Now, I think I’m someone who can take a joke, but really? That’s mildly amusing at best. It’s uncalled for. Wrong time pops. Bad, bad timing.  He needs a comic coach.

Let me make the joke, please, or let me participate in them. A warning at least–would’ve been nice. And this kind of remark is exactly what creates stigma. What’s most inflammatory though is that I sensed some passive aggression there. My dad has many good qualities about him, he really does, but he completely lacks discretion. I know he’s been taking a lot my shit lately. I know it’s not easy on him these days being in a not-so-good financial situation. I know it’s been a hastle for him to still have to care for a household at his age and then drive me around to the hospital every week for the last two months. He’s sixty-eight. He’s tired. I know.

Whatever.

I let it slide like water. Slide on down, drip on down my head, my body, my legs. Let the carpet soak it.

**********

Then about two hours ago, my dad and I get back home from the hospital. I’m in the kitchen about to eat ’cause I’m hungry. All the while I’m deciding on whether or not to go to this thing K. invited me to. I start telling my mom about K and how I miss being in the music scene. I miss recoding, miss making music–my number one love.

“You know she looks really jovial, really cheerful and happy, a go getter” my mom interjects. (I’d shown her pictures online the night prior when I asked about the ride.)

When she said that, I don’t know what came over me. No, I do know, I took offense. It must’ve been my shattered pride, that demonic ego. I guess I got on the defensive because I’ve been a hard-working, jovial, go-getter too. I’m just not right now. I felt she was implying something, like she was comparing, criticizing. So I start saying how L. mentioned that she K. a big temper. Why does this all even matter? Why would I say that about her in my defense? I too have a big temper. So what? Great comeback PAZ.

My dad passes by as I’m making these remarks about K. and interrupts, “one thing is having a temper, another is being afflicted and sad all the time.”

Ok. Now I’m perplexed and angry. But I do my best to maintain my cool. Keep cool P. Keep cool.

“What do you mean by that?” I ask. He doesn’t reply and walks off. I look over at my mom, “What does he mean by that?”

My mom then starts a lecture about how she learned to let things slide and that’s how she avoids being miserable these days, these dog days . She tells me that sometimes, it’s difficult to let it go, to drop it, but it’s best to.

She’s right. She’s right in many ways.

Alright then.

And she learned this after she had been in therapy (referred for mandatory therapy by APS) a short while as a result of the last serious fight we had three years ago, the one where she slammed me to the car floor, nearly choked me to death, and had to be pulled off of me while clawing and lashing at my face and hair and everything. I’m not even going to say all of the angry nonsense she was yelling at me while all of this was going on.

So I start to think that if I didn’t “let things slide” or “let things go,” I wouldn’t be talking to her right now. I’m not so bad then. And I know what she means. I know she means well. I know my mom is concerned. I know she loves me. She has done a great deal of change since then. I guess one could say she sure has benefited more from her brief stint in therapy than I have in my four years of it. But who’s to say? In the end what does concern alone do? And what was this all about? How did it get started? What am I doing?

I’m frustrated. I’m confused. It’s beyond me. My mind is in a swirl. Whatever.

I don’t want to be bitter.

“Oh you’re gonna end up bitter like your grandma if you don’t change” I hear that a lot. (This is the grandmother that lives in Colombia, the one I haven’t seen since I was four.)

Have I not been trying?

I’m not going to be bitter. I know better. I’ll continue trying.

But that doesn’t mean I don’t hurt; it doesn’t mean things like that are cool to say. How do I get him, my dad, to understand? He doesn’t even know the half of it. He doesn’t even know half of half of half of it. I will not burden him with my madness. This isn’t sadness. I am not “sad”. I do not want this. 

Pride is spiraling down. It’s all just piled and avalanching within. Idiotic pride. And this, this situation’s gotta change. Something’s gotta give and I’m ready to make  way. Otherwise, I just may…

Well… I guess it wasn’t so much a rant after all. Or was it? Don’t tell me. I’m not in the mood to argue.

Jesuz. I’m really sensitive these days.

**********

So in the end, I listened to my mother until she was done, then quietly rolled back to my room to cry for a bit. I calmed myself with this song. It’s on replay.

(I normally wouldn’t embed videos but Fiona is an exception, an extraordinary exception. Oh Fiona, my platonic wifey.)

I know I can be self assured. I’m just not right now. I want to be so again because I’m pretty fucking extraordinary.

Will I go see K. perform? I still haven’t decided. Probably not.

Fuckin’ done.

_________________________________________________________________________________________________________________

As you may know, I am a girl prone to low-days. I don’t know how many times I got to soundcheck, in a grumpy, nasty, teary rut.. ~Fiona Apple

And after all the folderol 

What did I learn?

I am likely to miss the main event
If I stop to cry or complain again
So I will keep a deliberate pace
Let the damned breeze dry my face

Oh, mister, wait until you see
What I’m gonna be

~Better Version of Me, Fiona Apple

I’ve been ignoring personal emails, and I’ve been avoiding Facebook for about two weeks now. I’ve even been dodging the few phone calls I’ve gotten, one or two which I did eventually get back to. Since I felt more awake today and am trying to get my mind in place, I figured I should at least clean up my inbox. You know how you can still get some comments people leave on FB groups without actually having to sign in? Well, I read a few and one caught my eye.

It had a link to a site I’ve never heard of but now that I see it, I think it’s pretty awesome. They have a Rare Disease Day! 

Hooray for awareness!

I have a rare condition, uh, disease. It’s called Osteogenesis Imperfecta (OI) that I’d briefly mentioned in my overly self-indulgent “about” page. Naturally, through friends of friends of friends I’ve been added to dedicated medical groups on FB, and I learn something new all the time like Wish Bone Day, which is another awareness day but specifically for OI. I’ll let you guys know when I take the time to look at it. I believe it’s sometime in late March or April so it’s coming up.

Anyway, I just thought I’d share so that maybe you could share or just take a look at. The kind of conditions people live with are astonishing sometimes. When I’ve found myself in the ER, I’ve had doctors in the triage give me that look like, “Oh shit, how do I go about this? Ok. Ok. I got this.” It’s that look of false confidence, or in some cases, that look of terror that can only be accompanied by a monstrosity–because, though they may have heard of people like me in medical school, chances are that they’ve never had one right there in front of them. So they feel, and sometimes are, ill-equipped to properly treat.

I also notice that often times studies for rare diseases don’t get as much funding as they should. And they should! Biphosophonate infusions are rather new treatments used for children with OI, especially children with more moderate/severe types like the one I have. Some of these kids are now walking as early as the age of six! Trust me, that’s almost unheard of for a kid with Type III OI. Walking at any age is, well, rare.

It’s all because of studies that eventually lead to discoveries. It’s something my generation didn’t have, and I’m not old guys. But, despite my young and youthful appearance, I feel old. My insides feel clanky and haggard, my brain more crumbled and sour than an old man’s bitter beer face. All we had were osteodomies, which is a more or less crude rodding of the long bones. Yeah, I’m full of metal. My bro used to call me Robogirl even (I didn’t wanna be Terminator Girl). We were fans of Robocop obviously.

So I say a hell yeah, give a tip of the hat and a wink (with the only eye I can wink at the moment) to organizations like these.

In other news, I’m feeling a bit, just a bit, ant-size bit less–for lack of a better word–“depressed” at the moment… just a little less crazy today. Can you tell? Maybe I’m a little awake because I had that physical therapy appointment this morning. Maybe it’s because the sun came out full-time today

A week and a day ago my crooked smile disappeared. What I had left of a smile is now gone. Gone.

Poof.

It has vacated until further notice. It’s split and left no note or anything. You may be thinking that I’m speaking metaphorically when I say, “I have no smile now” or “I just can’t smile,” but no. I wish that were the case. Actually, I don’t because that would mean I would be severely depressed to the point of near catatonia again, and I definitely don’t want that. What I mean is that I’m saying this quite literally because the right side of my face is immovable, zombie-like, paralyzed. But now that I conjur metaphor, I will say that I also mean it metaphorically. After all, it’s difficult to smile inside when you lose such a basic function. It can be devastating.

On Wednesday morning of last week, just a day and two nights after arriving back in Houston, I woke up unable to move the right side of my face. The skin just hung there all soft and wobbly, like a dangling pancake. When I got up to get ready for my first therapy appointment since November, the delicate, pancake muscles on my cheek, lip, eyelid and eyebrow all slowly drooped; the nerve filaments microscopically scintillated inside.

Then, the tingling began, tiny sparks, growing stronger by the minute. That’s when I knew. I knew the facial paralysis, or rather Bell’s Palsy, had swooped in and struck me overnight.

When Bell’s Palsy strikes, it likes to do so incognito, in silence. It strikes like a ninja assassin sent to snap your seventh cranial nerve right there behind your ear. You may get the occasional warning–a spasm, soreness of the face, neck pain or a migraine perhaps–and many people do, but if and when you do, you’ll find yourself already struck before you can lift a leg for a roundhouse kick. In this case, however, you can’t even raise your brow to the mighty heavens and yell a crisp and clear “THE FUUUUUCK?!” because you can’t move your lips. Instead you sound like you have a moderate to mildly-severe retardation that causes your speech to slur and become nasally. Instead, your cry wheezes out with a lisp. It’s reduced to a faint, wispy whimper, “ph-puh-uuuck. “P”s, “M”s, “N”s, “B”s and “F”s are especially hard to enunciate .

This is the third time it has happened. The first time was in 2006…