prettier in hindsight

21 06 2010

Almost 10  years ago and more than 20 lbs lighter, this is me.  Shaun and I had taken a trip to the island where my family lived.  When we were young and had disposable income, we could do things like drive down for a long weekend.

This trip happened to take place just a few days after a hurricane had blown through.  The ocean was beautiful and turbulent.  Normally, it’s calm and only the most determined surf off the coast.  It was too beautiful to ignore so we set off walking down the beach, looking for shells and little sea animals that sometimes get washed up.

Several years before, we had come across a sea turtle that had been washed ashore and pecked on the neck by some scavenging bird.  We collected the little guy into an ice bucket we stole from a hotel with ocean water.  Then we went to the police station to see if a conservationist could come get him.  In a small town on a small island, the police are the ones who know who to call.

On this trip, however, there wasn’t as much debris – there were just HUGE waves.  (Huge compared to normal – I know other places put our little patch of ocean to shame.)  I couldn’t help it – I dove in and started body surfing, leaving Shaun with the camera.

It was wonderful, but even then my body had started it’s course towards this dis-ease.  I had been diagnosed with mitral valve prolapse.  I needed to sleep about 14 hours a day.  I would throw up if I was in the sun for too long.  I wasn’t even 21.  Instead of being young, beautiful, and fabulous I was busy making contingency plans.  Carefree and spontaneous were (and still are) words I didn’t understand.

No matter all that – I kept surfing.  After four or five waves I was getting very tired and decided to go after one more ride then go back to the hotel for a nap.

I dove in and started swimming out towards the waves.  That was the one that caught me – a riptide.  I remember being pulled towards the bottom and my brain started the emergency procedure protocol: don’t panic, relax, swim parallel to the shore.

Initiate survival tactic #1 – don’t panic.  I realized then under the water that I didn’t care very much if I came back up.  I wasn’t suicidal.  I was just at ease that if my life was at an end, that was ok too.  The pain, the fatigue, the grief, the losses of infertility – that would all be over if the ocean kept me.  I saw the swirls of the waves enveloping me and supporting me.

In normal circumstances, I’m terrified of drowning.  Of being pressed from all sides and powerless to reach the top for a breath.  The thought in my head during this was “one breath and it’s all over.”  Instead of terror, I felt relief.

I don’t know how long I was under but the ocean didn’t want me.  It spat me out literally at Shaun’s feet.  The wave pushed me into something solid and then there was a flash.

The flash of a camera held by my husband.

The ocean gave me back to him and it didn’t even take my hat.  That ocean is a pretty cool guy.  I’d like to see him again.

Multi-day migraine

18 11 2009

Here’s how it goes inside the thoughts of someone with migraines that last more than 24 hours.  My record is 65 days so please chime in if you made it 66 days without bursting into flames.  (Disclaimer:  if it’s the worst headache you’ve ever had or the first migraine you’ve ever had, you do need to go to the ER.  CT scans and MRIs exist for a reason.  The following is really bad advice.  Don’t take medical advice from crazy people or people in pain.  Or crazy people in pain.)

Day 1:  Dammit.  A migraine.  That’s exactly what today needed.  Where are my meds?  I hate my meds, they give me hiccups and make it painful to wear clothing.   Let’s try Advil and a nap.

Day 2:  Dammit.  A migraine.  Again.  I think I left my meds on my desk.

Day 3:  WTF?  Seriously? Fish out the Head On.  Wonder if people realize how badly hiccups hurt when you have a “headache.”  Joke about having to squeeze your head to keep your brain from falling out.

Day 4:  Did anything change recently to cause this?  Coffee?  No.  Caffeine intake?  Laundry detergent?  Scented candles?  Soap?  Bathtub cleaner?  Tobacco sensitivity?  Allergies?  Medication changes?  Toilet paper?  Does the Brita water filter need to be changed?  Did the weather change suddenly? No to all those.  Switch from Head On to the Bath & Body Works aromatherapy stuff.

Day 5:  Bad karma?  Voodoo hex? Spinal misalignment?  Time to try the old wives’ tales.  Soak a bandanna in vinegar and tie it around your head.  Gargle with hot sauce.  Drink a cup of straight apple cider vinegar.  (This doesn’t work so don’t try it – it just causes instant and painful vomiting.)  Leave out a small dish of sea salt to ward off evil spirits.  (Really, after 5 days of constant pain, this is not such a crazy idea.)  Contemplate a story a coworker told you about breaking your femur being the worst pain imaginable.  Wonder if that would take your mind off your head.

Day 6:  Fuck the pain meds.  Where’s the xanax?  If I’m going to be in pain I may as well not care.  Cuss out anyone who says it’s “just a bad headache” or that “they get them all the time and it barely affects their life.”  Pour the sea salt in the bathtub and take a long bath because you really stink, and what if the evil spirits are already inside you?

Day 7:  I may need to get medical attention.  No, that’s a bad idea.  I’d get to sit in a loud, brightly lit waiting room with 100 of my closest neighbors who all have the swine flu so the loving doctors and nurses could give me the same medication I have here after sticking me in a tube that plays Scottish war drums.  Alcohol – that’s the ticket.  Being hungover wouldn’t hurt as badly as this.

Day 8 – Day 10:  How do I explain to people that I’m just getting randomly angry at inanimate objects?  I’m currently mad at the mattress for not being molded to my butt and at the bathroom door for squeaking.  The TV is trying to kill me too – the volume is randomly increasing and decreasing.  What’s that smell?  Go tell the neighbors to stop putting on deodorant.  It’s searing my nose hairs!  Look longingly at the bottle of alcohol because you can’t even swallow enough of it to get buzzed without throwing up.   It’s only mildly interesting that I have a twitch in my left eyelid and I can hear my pulse in my left eardrum.

Day 11:  Air hurts.  I’m out of meds. The 1 – 10 pain scale no longer applies.  I printed out a figure of a woman and I’m coloring in the head with orange, red, and purple crayons.  Ya know, I heard a story once about people who throw themselves down stairs just to get pain meds to sell.  I wonder if they’re listed in the phone book.

Day 12 – 30:  Cry at random points in conversations with doctor’s offices, hospitals and insurance companies.  When someone says “you shouldn’t be in this much pain” yell “NO FUCKING KIDDING!”  Call back apologizing for the outburst. Tell people that you’ll consider quitting the pain meds when the pain goes away.   Go to the most recent doctor and take elaborate pleasure in lining up all 60 of the medications you’ve been prescribed over the last month on their desk.  Tell the next triage nurse at the next ER that you can’t use the 1-10 pain scale when the 10 is the worst pain YOU’VE ever been in.   Inform them that you need a statistical average of the people in your demographic.

Day 31 – 40:  Research on the internet how many pills it would take to kill you.  Vow to not go over 75% of that total.  Wonder if there’s a job market for people who can’t wear clothes due to sensory overload caused by triptans.  Wait for the meds that the doctor said would take about 2 weeks to build up enough to kick in.

Day 41-50:  Consider the wisdom of continuing to breathe.

Day 51+:  Congratulations!  You’ve passed the point of no one being surprised you’ve gone slap crazy.  Accuse random people of poisoning your medications and refuse to drink out of anything that you watched be washed.  Carry a pillow everywhere you go to wrap around your head.  Call the doctor and tell them gleefully that you haven’t barfed on anyone’s shoes today.  Lay down for a nap where ever the urge strikes.  Live on salt & vinegar chips, cherry coke, and sweet tarts because they distract your taste buds for a little while.


At the time of posting, it’s Day 10.  I have just learned that Imitrex apparently works by making the pain TWICE as bad as you’ve ever been in, but if you manage to keep it down for 30 minutes it will take away all sensation and emotion.   That’s ok.

I am pissed off!

11 08 2009

Back from the ultrasound appointment.  If you think it’s one of those scan the belly types of things you see on TV, you’re either deluded or have a penis.  Ultrasound machines look like this:

You see that finger shaped probe next to the roll of TP – that’s how they do the ultrasounds.  It works much like a dildo with sonar but normally you don’t use a dildo to poke every single place inside your abdomen.

I’ve been through this before and I was expecting it.  At least they lubricate those things well.  No, the ultrasound isn’t the reason I’m pissed off.  It’s the reason I’m still in pain after two darvocet but it’s not why I’m mad.

I’m mad because the ultrasound CLEARLY showed a septum (makes the uterus Y shaped instead of triangle shaped) but also showed massive amounts of endometriosis and a large cyst on my right ovary.  The tech said it’s very clear why I’ve never been able to get pregnant.

Here’s why I’m mad:  SO WHAT THE FUCK HAVE I BEEN DOING SINCE 2004!  Holy shit, didn’t you think that was like pertinent for someone who’s taking fertility meds known to cause cysts and blindness????  I mean if it’s technically impossible for me to carry to term, why didn’t they recommend a surgical solution years ago?  For years and years and years I’ve lived with this constant pain, hoping that my uterus would do it’s damn job and when I finally adopt 3 kids and demand a hysterectomy no one is SURPRISED once they take a look under the hood.  Or inside the hood, as it may be.

Yeah, yeah, it all happens for a reason.  Everything worked out just fine.  It doesn’t make me less angry.  I could fucking break something right now but I need to get ready to go to my NEXT appointment – the one where I get tested for all kinds of BS to make sure I won’t croak on the table.  I hope it goes easily because I don’t know if I can control my mouth today.  I can’t wait to get asked why I never picked up the referral to the cardiologist.  It’s because cardiologists deal primarily with old fat people and I am neither old nor fat.  I’m tired of wearing a damn monitor for weeks just so they can say “we don’t see any electrical abnormalities.”  I don’t deal well with beta blockers and unless they are a cardio-thoracic surgeon, there’s nothing they can do for me even if they believe that my symptoms are “real.”  Because as everyone knows, mitral valve prolapse isn’t a “real” medical problem and dysautonomia is “all in your head and you’ll feel better once you’re not as scared about it.”

Fuck that.  I’m not paying someone a $25 copay so they can think I’m exaggerating how bad it is and do absolutely nothing to help.  If I were a Munchausen or a hypochondriac, I’d be searching out doctors – not avoiding them because they don’t consider my symptoms serious enough.   MVP may be academically interesting (cool, can I hear it click?) but it sure is an annoying thing to not die from.

Lots of work to do, no money to be found

19 07 2009

I know that on Sundays you aren’t supposed to worry about work.  Let it all wait until Monday and just take some time to relax.  Right…

I’d been joking for a few months about going to work at Hooters to get a little extra cash flow.  When the adoption went through, we lost about $1k a month in income because we didn’t want to wait for the special needs waiver to go through on A.  It would have put the adoption off for another 8 months or so and from experience we’ve learned that a lot can go wrong in 8 months.  LJ’s had gotten approved two days before we signed intent to adopt but being A is younger, we didn’t have enough documentation to get the rubber stamp.  It was better to just get the adoption finalized even without getting the special needs care she qualifies for.  We did, however, get federal Medicaid on all the kids until they’re 19 or out of high school.  It covers mental health treatments and that’s what we needed to ensure.

Note to potential adoptive parents:  make sure you get the adoption assistance.  It’s wounding to the pride, but you’re gonna need it and use it.

Back to Hooters.  I found out today that I can’t work there because I don’t meet protocol – tattoos are out of dress code.  Damn, that means I may have to find work where I use my IQ instead of my T&A.

Unless I find somewhere I can flex-work or work part time, work just isn’t a viable option yet.  I say yet, but the truth of it is that I’ll probably never be “cured.”  Shaun has intermittent FMLA leave enacted in his job because the next migraine could literally kill me.  Reading that on paper scared the crap out of me, even though I knew it.  The MVP puts me at a higher risk of stroke, syncope, and fatal arrythmias.  Being the migraines are severe enough to take out my vision and I often can’t keep anything down, dehydration is a major risk.  Not enough blood running through the heart equals regurgitation and syncope.

I want to just scream that it’s not fair.  I’m 28!  I’m one of the smartest, most talented people in the workforce (mathmatically speaking,) I have the will and want to work – but I can’t.  I can’t even lift my head some days.  When I feel like that though, I verbally tell myself to shut up.  One of the kids I went to school with just died from cancer this past week.  He wasn’t one of my friends, but we ran with the same crowd.  Well, as much as a socially-impared art geek can run with a crowd. I’m blessed beyond belief.

I think I’m just feeling older than my age.  Wednesday, I have an appt with the OBGYN to start talking about a hysterectomy.  Friday is Shaun’s and my 10 year anniversary.  September is the 10 year high-school reunion.  I have three kids, ages 9, 5, and 4.  Two of them have PTSD and the laundry list of abuse related and drug-exposure related mental illnesses.  The last one is trying his hand at tantrums, but doesn’t have the stamina to keep up the 4 hour fits his sister is capable of.

The kids keep bringing up in therapy that they’re scared because I’m sick and they don’t want to lose another mom.  I can tell them again and again that it’s just a headache, but they know.  Kids are really good at not accepting bullshit and I’m really terrible at lying.  I don’t believe I’m going to die but I do believe that I’ll probably battle this well into my 90s. I grew up taking care of my mom through the same thing and I’m a productive member of society.

Some days are great and I feel like I did before I got sick… or until the sickness that I was born with caught up with me enough to take me down.  I have energy.  I laugh and smile.  My grammar doesn’t suck.  I have patience and want to conquer the world. I think about another child.

Yesterday was one of those days.  We went out with the kids to thrift stores and antique stores.  We picked up some pipes for Shaun to restore.  I got some $3 keyboards at Goodwill to modify and some clock parts.  We spent the kids’ Toys’r’Us gift card and their McDonalds gift card.  It was beautiful and sunny and great.

This morning was the same way, but a bad night’s sleep and too much caffeine caught up with me around 4 pm.  I got out and cleaned the wheels and chrome on my Durango now that the local road work is done.  I started teaching A how to work the shower since she’s going to start school in 3 weeks.  I took apart one of the keyboards and started cleaning it and sanitizing it.  We had pizza with the big family at Mom’s and the cousins all got to play and we made hand puppets out of paper bags.  I finally gave the digital picture frames back to my dad (one we couldn’t set up without an SD card port… blah) and set up the one for my mom.  I sorted through jewelry with my sister and stole some of her stuff.  The stupid gate at the family’s place was deactivated so we didn’t have to wait to be buzzed in.

Around the time Mom went to church with Grandma, I was a snippy bitch.  I even snapped at my mom.  I snapped at the kids for singing Spongebob’s “idiot friends” song.  I came home and took a bath, finished a stupid book, and tried to steady myself with working on fixing a flatbed scanner.  What I should have done is taken a shot of Zomig.

Now I’m going to attempt to sleep it off after I get Cali cleaned up.  Nola got pissy and and started a fight.  It looks like Cali lost a toenail.  Shaun’s putting the kids in bed and I’ve got the cameras charging so I can download the photos in the morning.

I don’t know who is harder to raise: children or German Shepherds.  They’re all too damn smart for their own good.