Short Letters to Random People

30 11 2010

Dear House,

I regret to inform you that your TV show is no longer my favorite.  Since I was diagnosed with Lupus, that show got a little too real.  Now I listen to Castle as I fall asleep because it’s just as entertaining and it will never happen.  Seriously.  It would take David Baldacci getting writer’s block, and deciding to drop in and follow me around being a stay-at-home-mom. He could make stupid comments while I make parenting look sexy and cool and once an episode come up with some spectacular solution.  David Baldacci once answered my question on a LibraryThing forum and did it without any mockery or stupidity, so I can’t say I see this ever happening.

I will still watch and enjoy your show but you will no longer be top billing in the part of my brain that dishes out pop culture references to serious situations.

 

Dear Dr. Cuddy,

In the season finale of Season 6 and AGAIN in the first few episodes of season 7, you told House that you being in love with him had nothing to do with wanting him to change.   He told you that you’d eventually start being pissed off at the things he’s ALWAYS done – like lying to you about a patient – and you said “nuh uh, won’t happen.”  Now, you’re pissed at him for doing exactly the same thing he did in every single fucking episode in the last 6 seasons.  If you really don’t want to care about him doing what he does, only assign him patients you hate.  Then if they die from some stupid treatment that will spike your BP, you can at least be comforted in the fact that they are DEAD.

Or whip out the ole “really long consent form” for all his future patients.  “By signing this you agree that you’re about to be treated by a mad genius.  You agree not to sue him or his employers for any retarded, unethical, experimental, insane, and unrecommended treatment.”  You’re smart enough to get what you both want.  It’s just going to take some creativity.

 

Dear “As Seen on TV” Toy ads,

Thank you so much for teaching my kids the art of creating stupid jingles.  In response, I have taught them about the psychology behind advertising.  At least now they know not to sing me the little tune and beg for something at the low, low price of $59.99 for 2 packs of glorified play-do unless they really want to hear Mommy rant for hours.

 

Dear Girls,

I’ve been thinking about you a lot lately.  I know I don’t want you to ever read this because no one should have to carry this with them, but I can’t hold it inside me.  If you ever do find my blog, this is at least an honest recollection from a woman who loves you.

I replaced the last pictures we had of you with more recent pictures of our forever children.  For some reason, God had different paths planned for us and we were only together for a short time.  I spent and I spend a lot of time mad at Him for what happened.  It’s odd to me that I still love you the same amount as I do the children who live in my house.  With them, they get older and smarter.  They make mistakes and grow.  They get more and more like us.  They have opinions – rather loud ones – and desires and needs.

With you, all I ever got was a few months and some pictures to remember you by.  I remember you as 5 and 7 year olds but 4 years and an entirely new family have come for both of us.  With them, I was handed their novel.  With you, I was only given a few short chapters.  I’d like to read more and know more, but it’s best not to pester the author while the story is in progress.  In another 10 or 15 years, hopefully I can learn the rest.

I still have the pictures on the computer I use most often.  Every file I pull up, I see your pictures.  I’m learning to let go – quietly and slowly – but I haven’t made it to the point of putting your photos on an external drive yet.

 

Dear my fashion sense,

Are you done with your little vacation yet?  I know I spend most of my time in sweat pants and a tank top but I’m ready for that to change!  Do you know that lately I started throwing out DSW catalogs before even looking at them?  Why?  Because there’s no point in buying shoes when I have a closet full that I don’t wear.

Do you hear me?  I rationalized NOT BUYING SHOES.  I’m going insane without you.  I haven’t had a haircut in months.  MONTHS!  I want to start a blog for fashion choices for people with neurological disabilities (or fibromyalgia or anything that comes with dysautonomia or allodynia.)  I can’t do that when my uniform includes navy blue sweat pants, black knee socks, and a crazy colored tank.

Fashion sense, you better get your ass back here RIGHT NOW.  Put down the tropical drink, put on some clothes and clock back in.  You’ve got work to do!

 

To my children –

Effective immediately, I’m spraying you with Lysol the instant you get in the car after school.  You end up with a virus and get sick for a day or two.  I get the virus and the Lupus tries to eat my face off.

I have been on antibiotics for 10 days now and have 4 more to go.  I taste onions constantly.  Look, even the baby knows “don’t talk to Mommy until she’s had a cup of coffee.”   You try drinking coffee in the morning when all you taste is onion.

The only solution is to stop exposing your mother to germs and I’ve caught you little shits licking tables in fast food restaurants.  I KNOW I’m nuts so I can only imagine what disgusting things the little shits who do not have me as a mom do.  Those kids are sharing their germs with you and I don’t want them.

 

Dear Levenger,

Stop sending me two catalogs several times a month that have the same beautiful, lustworthy items in them.  Once a month, I get to drool over your leather goodies.  After that you’re just rubbing my nose in the fact that I’m too poor to buy them!  I already send you way too much money for Circa supplies – but now I get to cry a little inside when I see the Bomber Jacket leather card wallet that matches my Bomber Jacket leather Circa cover.  It’s the only thing that makes me want to replace my red leather card wallet that I bought 4 years ago.    The red leather wallet that goes everywhere with me.  The red leather wallet that I bought a matching clutch for so I could tote my lipstick and perfume along with my personalized note cards.

I really love you, Levenger.  I love how Mr. Leveen replies to posts online and writes a thoughtful blog.  I love your customer service.  I grudgingly understand how you’ve had to adapt some of your products to Apple’s tomfoolery.  But please stop taunting me!

 

 

With all the love in the world, Cyndi

 





gonna get buff

1 09 2010

I want to set a goal about getting in shape but I’m having a hard time picking something.  I’m anti-social and I can’t do outdoor activities because of this crazy sun sensitivity.  I used to do Choi Kwang Do (1st degree black belt) but when the new speed drills were implemented, it was too hard on my already tachychardic heart.

It’s fun to watch my pulse after watching medical shows.  They’re all like “her pulse is 130 and rising! get xxx medicine!”  Last time my pulse was under 100 the  nurse thought her machine broke because it’s NEVER that low.  130 is a mildly annoying day.  I once topped 200 at the hospital (because they stabbed me with a huge needle to take an arterial blood gas test and it HURT) and all the monitors went off and the crash carts came running in.  The look on their faces when they saw me sitting up in the bud cussing a blue streak was priceless.  Apparently you’re supposed to be dying or some shit when it gets that high.  I’m just an over-achiever.

My dad was telling me that he got an exercise machine where you laid on your back and held on to the straps then flopped like a fish.  He said it really works too.  He lays in the floor for 30 minutes a day and flops around and he’s getting buff.

I want to be muscular and stuff too!  Since I haven’t been able to eat as well lately I’ve turned into an interesting mix of angles from my bones and fat pockets.  My abdomen looks like a V with a donut in the middle.  My butt remains unaffected.  It just hangs out there in all its glory and soaks up all the calories the rest of my body wanted.

I even split a pair of jeans in the crotch area this week.  They just finally gave in to the pressure like teenagers staying the night at a friend whose parents have a full liquor cabinet.

When the kids were younger I got exercise from chasing my chipmunks on crack around.  Now they’re gone most of the day and tired when they get home… and I really don’t want to watch anyone else’s crackhead.

So, friends, have any ideas?  I need to find out the name of that fish-flopper-machine but I’m thinking I may start with a lumbar stretcher and an exercise ball.





circle queen

27 07 2010

I’ve been debating whether or not to write this.  Shaun says I should because I have to get it out somehow.  I feel more and more like the circle of people who understand what I’m going through is getting smaller and smaller.  If I were a Venn diagram, I’d be the only one in the overlap.

People who can’t squeeze infants out of their crotch gets a circle.

People with auto-immune diseases and/or fibromyalgia get a circle.

People who have adopted a sibling group from foster care get a circle.

It’s like the events of my life have conspired to leave me alone.  I hear from the kids’ therapists that the kids are worried about me.  I hear from my family that I was crazy to adopt kids with issues.  I hear from my mom that I violated God’s will by giving up on fertility treatments and having faith that I would squeeze out my own perfect little humans.

People my age are getting pregnant for the first and second times and I don’t want to be a buzz-kill.  I don’t want to open myself up to hurt and I don’t want to be outside the circle of “everything is perfect and we’re going to breastfeed and co-sleep” and blah blah blah.  My kids were fed meth and kool-aid as infants and they’re smarter and better looking than most every kid I’ve met.

Then again, I deal with issues other families will never encounter and never understand.  Yesterday LJ, after finishing his breakfast, walked back by Chickpea who was still eating and gave her a lap dance.  She looked as shocked as I felt.  I told him to go back to bed while I tried to figure out what to do.

An hour later, I got him back up and asked him to write an apology to Chickpea for what he did.  Then came the tantrums… the tantrums that have been getting more and more frequent.  He’s 10 and a few times I’ve wondered if the neighbors were going to call the police because it sounds like someone hid a grenade under his pillow.

Yesterday, after 45 minutes of screaming at the top of his lungs, he crawled into the top bunk of his bed and walled off the rails with pillows.  He shrunk down into himself and he looked like a homeless war vet that is reliving combat in his mind.  I’m not exaggerating when I say that I was watching him just to make sure he didn’t try to hang himself with his bed sheets.

At the group home he used to stay at, churches would donate tickets to Six Flags and all these other fun trips and places.  No matter he didn’t have a family and the other boys and  some of the staff used to regularly beat and rape him.  He’s mad that he doesn’t get the fun stuff here.  He’s mad that we don’t trust him to get on the internet or have his own cell phone or provide him with numerous violent video games.

We don’t get donations and Shaun’s been having to take off of work to help me through this medication change.  We’re a lower middle class family living paycheck to paycheck but we love each other and we have stability.

But it’s my fault.  If I weren’t sick, Shaun wouldn’t have to take the time off.  If I were able to go back to work we would have more money but we’d never see each other.  If I were more of a people person and not so fucking needy, life would be easier on all of us.  If I could keep my mouth shut, we may be able to find a church home.

I’m terrified of being alone.  I’m terrified of hospitals and I hate specialists.  I think everyone thinks I’m pretty much crazy and that I exaggerate everything.  How can I look like I’m doing so well and things be this bad?  My life exists of pills, crying, and trying not to throw up.

Where is my sense of humor?  Why are some topics suddenly taboo in my mind?  Why do the longer I live the less I believe in God but believe more in the fact that things happen the way they are meant to happen?  Why can’t I get the bad things out of my head?  Why do I feel like I won’t live to see 50?





keep it down in there

12 07 2010

My gastro-intestinal system is very emo right now.  I’ve spent the last few nights dreaming that I was pregnant and doing a c-section on myself.  That would be kind of difficult being I lack a uterus and all but this kind of cramping is TERRIBLE.  It’s like my intestines decided that since I haven’t had a period in a year that they’d send me some cramps and nausea for good time’s sake.  It even joined up with my nervous system to throw in barrels of cold sweats, arrhythmia, and blue lips.  There’s a party in my tummy and the police just broke it up for being too wild.

I couldn’t keep down anything at all.  Not even the nausea meds so off to the doctor I went for the second time this week.  So what do you do for throwing up for so long your body has gone into SNRI withdrawal?  A big shot of nausea meds in the ass, a dissolvable pill and a firm order to keep down the effexor.  Today is a bit better but I still feel as if I’m buried under a pile of rusty screen doors.

The overwhelming depression seems to be easier today.  I just feel so emotionless – so flat.  I’ve been working on this blog post for 5 days now because by the time I’ve written something, I just don’t see the point in publishing it.

I did learn something this weekend while looking up how to fix this withdrawal.  The pharm companies call it “discontinuation syndrome” instead of “you’re so addicted your body is FUCKED for 10 days.”  They say that because your brain doesn’t crave the medicine like it would for coming off of a narcotic that it’s not really an addiction.  It’s a dependency.  The pharm companies also neglected to say that the half-life of effexor is between 5 and 10 hours so missing even a single dose will send your body into withdrawal.

As long as I’ve been on this med at such a high dose, when I switched to a different med my body shut down.  Even though the meds didn’t work for me any longer the “discontinuation syndrome” tried to kill me.  So now I’m on a plan to start up the new meds while taking the old meds at the same time, then once I’m on the full dose of savella, I’ll start weaning off the effexor titty.

I just want to function.  I want to do something productive.  I want my children to remember more about me than that I’m sick a lot.  I’ll be 30 in 6 months and I feel like I’ve reached and passed the apex of my life.  The depression is chemical too so I’m trying not to put too much weight on how I’m feeling.

All I can do is wait on this new med regimen to work and then go from there.  I’m also mega dosing on B and D vitamins because SSRIs and SNRIs leach those vitamins from your body and as long as I’ve been barfing, I know my body is craving nutrients.

Today, I’ll make it through today.  Tomorrow, I’ll make it through that too.





the magic show

10 06 2010

Yesterday, as part of the summer reading program at the library they had a dude come in and do a magic show.  It was great and the kids really loved it.  I came away with different thoughts about each of my babies from watching them.  It’s a sense of pride to see them interact with the mass public and know that I had a lot of influence on how they interact.

Today is the 1 year point of our kids’ adoption.  For one year, they have been forever OURS.  I love that watching them interact and respond to things, I see Shaun and myself.  They’re listening and growing and they are part of us.  Our little family of 5 – we’re US.

LJ sat in between Chickpea and E.  He smiled when something was cool and he would lean forward and plug his ears with his fingers when the little kids would laugh and scream.  He doesn’t like large groups of people and I don’t blame him!  Afterward, he sat in a chair, expressionless until all the people cleared out.  When only a small group was left, he got up and started playing with the other kids.  He didn’t freak out or cry, he didn’t show that he was scared, he just pulled into himself until he was comfortable.  I was so proud!

Chickpea was totally immersed in the program.  She would sit up on her knees and stare at the magician without blinking.  She was looking to see if he was doing it “right.”  When he did something funny, she roared with laughter right along with the other kids.  At one point she raised her hand like she wanted to ask a question.  She noticed EVERYTHING and studied everyone and everything around her.  A couple of times, she turned around and searched the sea of grown ups for me and smiled when she found me.  God, I love that little girl!

After the performance she asked if she could go talk to the magician.  It worried me but I said she could and asked what she was going to say.  She said “he said his baby magic wand didn’t have any magic – but IT DOES.  He shouldn’t underestimate the baby just because it hasn’t finished magic wand school yet.”

I wanted to laugh so badly but she was so serious!  She went up and scolded the poor man while I’m having flash backs to my childhood where I was just like that.  It made me smile when I realized the magician was picking obvious pre-school students for his volunteers.  They’re less likely to be like my kid.

E is the world’s biggest pre-schooler.  He’s starting Kindergarten in the fall.  He’s 4 foot tall and almost 70 lbs.  He still moves like a very young kid – all awkward and sort of floppy.  He doesn’t have that grace that comes with growing older.  He has such a charm about him – he collects grandmothers like its a hobby.  He’s all big eyes and toothy smiles with that little kid innocence and it’s almost impossible to not squeeze him.

He’d rather charm the people around him than watch the show, but yesterday he got into it and laughed and pointed with the rest of the children.  After the show, he was jazzed up.  He didn’t calm down until right before bed time.  He didn’t care about telling Daddy every line of the show – Chickpea does that part with input from LJ – he cared that he figured out how to make his markers “splat” if he smacked them on the paper really hard.

Before dinner, he was laughing at something he thought was funny and just rolled in the floor and laughed.  None of us knew what he was laughing at but it’s impossible not to laugh at him.  Pretty soon we were all cracking up laughing at absolutely nothing.

E is the maker of chaos and disaster where order and peace were.  If everyone is quietly reading or playing a game, he’s the one throwing couch cushions with deadly accuracy.  If no one is playing with their food at the table he whispers to Chickpea “throw a chicken nugget at me, it’s funny.” He knows all his letters and numbers and can read and write, but he won’t do it if he knows he’s being watched.  How do I know?  Later, I find a picture of a fish with teeth drawn in his minimalist fashion and underneath it says “pirana etes met.”  I can hear him count to 50 through the wall but if I ask him to count to 10 for me, he leaves out half of the numbers.

I can’t be mad at him because it’s funny!  He’s going to be a hellion in school but I know he’s absorbing the information somehow.  He just doesn’t feel the need to show anyone.  He’d rather be funny.

Then I have to tell him that if he’s going to be BAD, he needs to do a better job at it!  There’s this pesky thing that’s called evidence that shows me the truth of who has been doing science experiments in the bathroom.  If he’s the only one soaking wet and smelling like Purell, then I know who did it.

I have to say that I’ve been wondering lately if it was a wise decision to adopt them with as sick as I’ve turned out to be.  I didn’t know it was going to be like this when we started but again, hindsight and good vision and all that.

I was afraid yesterday that I wouldn’t be able to get off the floor where we all were sitting to watch the magician.  I had taken my meds before we left the house but still, my body was screaming at me 10 minutes into it.  I was trying my best not to cry.  I was trying my hardest to enjoy the show and ignore the pain and the people bumping into me and squeezing in closer.  I was trying to breathe through the raising temperature of the room.

But I watch their faces – their body language – and I know that Shaun and I did this.  We made their lives fulfilling and opened doors and opportunities that weren’t possible.  This is worth it.  Even if they have a sick mom and a mom who can’t do certain things, they have a mom who is PROUD of them and who wants the best for them.  They’re strong enough to work through the rest.





Things it’s not

29 04 2010

Note to the internet: this post is not going to be as awesome because I can’t find my humor folder.  Why?  It’s due to lupus.

Seriously.

The blood work that the doctor who does not suck did came back perfect – except for one thing.  Lupus ANA: positive.

We knew it was some sort of auto-immune going on but I had my money on rheumatoid arthritis.  Shaun and I had been joking all week that if it came back lupus we were going to shit bricks.  So, it came back lupus.

LJ ended up shitting the brick, though.  Seriously, the turd I had to save the toilet from was the size of an orange.  That’s bigger than my fist!  I’ve never known such huge turds could come out of such little people.

Crazy.

Anyways, yesterday I forgot my face care routine.  I got out of the bath and stood there staring because I knew I did something next but couldn’t remember what.  This is why OCD exists – it’s so that when your brain fuzzes out, you know where everything is.  Mess up the routine and you end up forgetting to tone then moisturize.

I had to postpone the cardiologist appointment (due to lupus) and the appointment person said “bless your heart.”  I wonder if she sees how cute that is, working at a cardiologist and stuff.  It’s probably good though.  It was starting to settle in that I may end up with a pacemaker (due to neurocardiogenic syncope) and I was starting to freak out.  MVP is the most annoying disease you’ll never die from, but that possibility is crazy.

My dad tried to tell me once that I was adopted and I just laughed.  I’m his daughter all the way from the beautiful but near-sighted eyes (our prescription are the same) to the places we hurt.  He’s had serious kidney problems since his early 20s, so now my mom is asking that he be tested for lupus too.  It may be good, again, I never had any genetic children.  I seem to be a genetic mess of problems.

So, what now?  From what I can tell, not much will change (due to lupus) except that now we have a new joke.  Take pills, lay down when hurting or tired, and do what I can on good days.  Read to take my mind off of the pain.  Grab life by the balls and live it.