Odyssey of an Oddity

Since Friday’s Feast has been gone for so long, I’m serving up something new thanks to the lovely Jodi.  Drumroll please, and get ready (readyreadyreadyreadyready - sorry, I’m a total music addict!) for Food 4 Thought Friday!

Breakfast
What is one thing you look forward to each day?  Each week?
I look forward to talking to my mom each day.  I look forward to checking my “dailies” – websites, blogs, and forums I enjoy.  I also look forward to watching The Simpsons (every day at 6 p.m.).  Now that the new season of House has begun, I look forward to that each week (Tuesdays at 8 p.m.).

Lunch
Are you a hoarder or a chucker?
I’m a hoarder for the most part (because I’m a sentimental softie), but I go through phases where I chuck things.

Dinner
Do your dinner meals consist mostly of home cooked meals, convenience foods (i.e. boxed, frozen, heat & serve, etc.), or fast food?  Who does most of the cooking in your home?
I don’t really eat “dinner” per se.  I eat when my wonky tummy will let me!  Most of my meals consist of convenience food because I’m a horrible cook, and also because it allows me to make smaller portions (I get sick in the middle of eating and have to stop sometimes, UGH).  I’m downright dysfunctional in the kitchen.  If I’m in the kitchen, you can expect things to get explosive.  I do 99.9% of the pyrotechnics “cooking” in my home, except for the times my mom cooks (home-cooked meals) when she and Isaiah visit me.

Midnight Snack
Has the rising cost of gasoline caused you to restrict, limit, or alter anything in your life?  If so what?
Actually…no.  My mom doesn’t have a car right now, and I can’t drive.

Recipe for this Week (instead of your recipe for life - what is it for just this week?)
Don’t do what you do or say what you say because you’re afraid of how you’ll be judged by others.  People will like you if you like yourself first.  Do and say what’s in your heart – be true to yourself.

There are far greater tragedies, like the daily assault on my poor lungs and sinuses.  To that end, a brief letter:

Dearest Idiot Neighbors (all of you),

Do not smoke outside on your balcony while it is raining.  The increase in moisture makes the smell infinitely worse and carries the smoke directly into my breathing passages.

Better yet, do not smoke.  At all.  Ever.  Thank you!

Smoking can kill you, which would be bad enough by itself, but if you continue to smoke, *I* shall be forced to kill you.

Your loving, caring neighbor,
Ioma

Alternate Title:  One of the Pharmacists at My Pharmacy is a Fucking Moron

Before I go into the drama that occurred a few Saturdays ago, I’ll say that up until recently, I’ve really liked my pharmacy.  There are two pharmacists that I can recognize by sight – The Blonde One and The Brunette.  I do know their names, but for the sake of privacy, Blonde and Brunette it shall be.  Blonde has physically gone out of her way to help me in the past, bringing my medication to my home when she got off of work once.  Blonde is a total sweetheart.  Brunette, on the other hand…  Well, she was always polite, but that’s about it.

This time, Brunette has gone beyond rude.  She accused me of doing something extremely illegal, and not to my own face, but to my mom’s.

When I pick up my prescription at the doctor’s office, I don’t scrutinize it.  I look at it quickly and make sure that 1)  it’s mine, 2)  it’s for the right medication, 3)  it has the right date on it, and 4)  that the doctor remembered to sign it.  This prescription looked fine to me.  I did notice that the 5 in the number 15 (for the date) looked a tiny bit darker than the other numbers, but I didn’t think much of it and I assumed that nobody else would, either.  I dropped it off at the pharmacy without a second thought.

When mom went to pick up the filled prescription the next day, she immediately noticed that the “N” slot (my last name starts with N) was empty.  “Oh, shit.  Did they not fill it yet?” she thought.  One of the pharmacists saw her and she asked if they had filled it yet.  The pharmacists whispered back and forth, right in front of her, for a few moments before Brunette came to the counter with my medications, wearing a nasty look on her face.

“Was there a problem?” my mom asked.  Brunette, still holding my medications hostage, slid the prescription slip across the counter and pointed to the date, “That number 5 is darker than the other numbers.  We were suspicious that your daughter, or someone, tampered with or altered the prescription.”

Cue my mom getting REALLY freaking pissed.  She pointed to the prescription and, “See that 8?  It’s narrow and kind of looks like a 6.  Do you want to nitpick about that, too?  My daughter doesn’t even see well enough to do what you’re accusing her of doing.”

“Well, you’re right.  That 8 does look like a 6…” Brunette says nastily as she hands over my medications.

What the hell is wrong with people?!  Brunette is lucky she didn’t have to deal with me.  I’m not nice like my mom.

If she was so concerned with the date, she should have called my doctor’s office to confirm before filling it.

I would take my business elsewhere, but they are the only pharmacy in town.  I’m hoping this was just a one-time incident.  Otherwise, Brunette may find herself without a job.

NEWSFLASH:  Dearest Brunette, I do not like having to take this medication, or any medication.  I don’t like being in pain and having a condition that could kill me.  I also don’t know how to get the fuck over feeling guilty about having pain, especially so young.  And so far, no medical professional or authority figure has made me feel ok about any of this.  And my doctor is taking the medication away soon anyway, so you won’t have to deal with it anymore.

*Her name isn’t Jill.  I just parodied a line of an already very funny song.

Last week, I went to my doctor for what should have been a routine appointment.  Our appointments usually follow the same pattern:  the doctor talks to me about stuff and refills any medications that need refilling.  We almost always discuss the same thing – my pain.  It’s not always the only topic of discussion, but it always comes up.

After being on the same medication at the same dose for a little over a year, she has suddenly decided to take me off of it, even though it’s helping my pain. 

At our first visit, she tried to get me a referral to a pain management specialist (a doctor who exclusively treats chronic pain, nothing else), but found that there is nobody in the area who accepts my insurance.  She said she’d treat my pain herself.  She seemed very laid back about it.  The things she said made me believe that she understood that EDS was just plain painful and that pain, unfortunately, does not discriminate.

She did give me the name of the pain management specialist she wanted to refer me to, and I wrote him a letter.  I received a phone call from his receptionist about a week later.  He thought I was interesting and wanted to see me in consultation free of charge.  He was a wonderful person – kind, compassionate, understanding, and very knowledgeable about EDS and pain in general.  Because my insurance won’t pay for any prescriptions he would write, he wrote a letter to my doctor with recommendations for medications that might help me.  If cost wasn’t a limiting factor, I’d go right back to him for my pain management in a heartbeat.  He and his staff are incredible, and I know my pain would be understood and not undertreated there.

My doctor said she received his letter, but she made no comment other than how nice it was that he was willing to see me for free (and I agree).  She is not prescribing the medication he recommended and I did not ask why.

When she first started treating my pain, she would emphasize quality of life, saying things like, “We can help make you more comfortable.”, “You may be on this medication for the rest of your life.”, and “I have to give you a pat on the back for how well you’re dealing with this.”

I told her that I understood that, even with the best pain management in the world, I would most likely have to deal with some degree of pain, possibly for the rest of my life.  I know that she is not a magician, she’s a doctor.  And when it comes down to it, she’s a person, a regular human being, just like me.  I was not expecting her to work miracles, but I was expecting some understanding, compassion, and, most importantly, consistency.

Things have changed.  Now, she says, “We don’t like to keep patients on this medication for very long.” and “You’ll just keep needing more and more.  You’ll be 40 years old and bedridden, disabled, and blaming me for putting you on this medication.”  I haven’t had a medication change or increase in almost a year.  I’m 24 years old and already finding myself stuck in bed because of pain.  How do I get people to understand that?

I can understand her wanting me to try other medications.  I think it’s a great idea to get some x-rays of The Big Offenders (the joints I have the most problems and pain in) to check to see whether or not I have any arthritis.  We already know I have osteoporosis in my hips and spine, and it would be nice to know if I have any arthritis we should be treating.  I’ll be willing to try whatever she wants me to try.

I’m not as upset about the medication as I am about the abruptness of the change.  There was no mention of this during my June appointment.  Her whole attitude, and even her tone of voice, has changed.  She almost sounded scared, somewhat frantic, at times.  I remember what I heard during my previous appointments, and this was not the same.  It was as if I was talking to a different doctor altogether.  She was so abrupt and different that I feel like I’ve done something wrong.  The whole appointment felt wrong.  When I asked about ordering the x-rays and starting a new medication that day, she said that she didn’t have the time – we’d do it in a month.  As she left, she asked if I had anything else for my “list of complaints”.  She probably didn’t mean for that to sound mean, but it bothered me slightly.  I realize I’m a pain in the ass, medically speaking (and probably in many other ways), but you don’t have to remind me.

She is a good doctor.  She listens to me and gets the job done.  She was probably just having an “off” day because she was so rushed – while I was sitting in the waiting room, I overheard that a few of her patients were late for their appointments, and she already had patients backed up.

But I’m starting to think she might have bitten off more than she could chew when it comes to taking care of me.

Still, I feel strange about how the appointment went.  It feels like we’re not on the same wavelength anymore.  I thought we had established some trust and some kind of routine, and this sudden change has left me feeling a tiny bit betrayed, or at least lost.  I’m a little irritated that she chose to change my medications as we’re going into winter – the time of the year when my pain increases significantly.  Also, with the pain under a little better control over the past year, I started doing more stuff, including getting a part-time job and considering going back to school.  I hope the pain doesn’t increase so much that I have to give any of that up (again).

Have I done something wrong?  What do I have to do to get some freaking respect?  Do I have to go in there in a wheelchair, crying to get someone to understand?  I sure hope not, because that’s not my style.  I am so tired of being judged, looked down on, and feeling like a bad person because of my pain.  Perhaps respect is just too much to ask for, especially considering I’m too young to have earned it.

At the risk of being thought of as a huge(er) drama queen, I’ll simply say that since I may be looking at a shortened lifespan because of the vascular nature of my EDS, I do not deserve to live that life with untreated, or undertreated, pain.  I wish I could find a doctor who got that.

This isn’t such a big deal compared to what happened at the pharmacy on Saturday…

Today is Isaiah’s 8th birthday!  I didn’t get to spend it with him because of our little lack-of-car situation.  Mom’s downstairs neighbor said he’d drive her and Isaiah in to see me tomorrow.  That’s all fine and good, and I am grateful, but I’m still pissed off that we couldn’t spend TODAY together.

I don’t have any pictures (yet - mom promised me she’d take pictures), but I hope to have some in the next few days.

To my little brat brother:  Eight years ago today, I prayed that you’d be born normal, healthy, perfect.  My prayers were answered.  You were a strong and happy baby.  You always laughed so hard that you got the hiccups - like when I would look at you and roll my tongue, or stick my tongue up my nose.  You’re becoming an avid Simpsons fan, but when you were a baby, your favorite movie was Dumbo…except for the part where Dumbo gets taken away from his mom.  I would see it coming and stand in between you and the TV and fast-forward through it so you wouldn’t cry.  You’ll never admit it, but just a few years ago, you were terrified of bugs - now you aren’t afraid to pick them up and scare the girls with them.

Some day soon, too soon, you’ll be taller than I am (but you’ll never be smarter!), but you’ll always be my little bro.  I love watching you grow.

Happy birthday, buddy!  You better have saved me some cake!

I didn’t really know how to feel about what he’d just called me.  My logical self knew that I shouldn’t be bothered by it, especially considering his age and maturity level.  He still had no right to call me that.  He should have been minding his own business, anyway.

I was invited to a birthday party for a friend of Isaiah’s.  It was being thrown at the pool, which is within walking distance of my place, and there would be pizza and cake.  Normally I don’t go places where there are lots of kids, but I can’t resist pizza, cake, and the opportunity to swim.

Because I’m a special, special snowflake (you know how some people say their body is a temple – I say my body is more like an amusement park where the rides break down randomly and suddenly), I have to consider logistics whenever I go somewhere.  How much sun exposure?  How hot will it be?  How easily accessible is the place?  How easy would it be for me to get back home if my body turned hateful and I felt I had to leave?

The whole thing seemed quite doable.  There would be almost no sun exposure because it started at 6 p.m. and the sun had already dipped down behind the mountain.  It would be hotter than hell, but remember – POOL party.  Plus, I was willing to risk dizziness, fainting, and seizures for pizza and cake.  With the exception of one big, fat flight of stairs, the place was easily accessible and only a five-minute walk from my house.

So I went, and had a rockin’ time!  Good food, pretty good music, and except for dislocating a shoulder while pulling Isaiah through the water while he held on to me (never fear, he can swim), a good time all around.

I finally hit my ditch point – the point where my pain level got so bad that I had to leave pretty quickly.  I said goodbye to as many people as I could and thanked Isaiah’s friend’s parents for inviting me (and apologized for having to leave so soon).  My arms were not cooperating and I was too stubborn to let someone help me get dressed, so I wrapped a towel around myself and shuffled off in the direction of home.

Just as I came around the last turn, I heard, “Hey!  Hey, you!”

The voice was that of a boy who, I would guess, was about 13 years old.  I could follow the sound of his voice and I knew exactly where he was, despite not being able to see much of anything.  He was on the steps of a house I’d passed by tons of times; a house I’d always thought was vacant.  I never feel particularly comfortable responding to someone I can’t see, and a voice that I didn’t recognize, for that matter.  I still wasn’t even sure if he was talking to me, and I was in too much pain to care.

Up until that moment, I hadn’t considered my physical appearance.  I assumed that nobody would be looking or checking me out.  I hadn’t thought about my very noticeable limp, which only worsens when the pain worsens, and the fact that when I’m in pain, I fold up like the former Pope.  I could only imagine how limpy and folded-up I looked at that point.  I looked straight ahead and kept going.

“HEY!  HEY, YOU!”

I continued to ignore him.  I didn’t feel like socializing anymore, and what the hell did he want, anyway? 

“HEY!  HEYYYYY!”

Oh SHUT UP.  I tried to walk faster.

A second voice piped up…

“Forget it.  Nobody would want an ugly cripple like her, anyway.”

Ouch!  Well, that was a first for me!  I’ve been called a freak, freak of nature, mutant, mistake, retarded (by my first grade teacher, no less!), “a shame”, and a thing (also by my first grade teacher – “Why does God make…things like you?  You shouldn’t even exist.”), but never a cripple…until then.  And UGLY, as if to add insult to injury.

I suppose I asked for it, walking home in a towel like that.  I should have let someone help me get dressed.  Dumb!  Dumb, stubborn girl!  Everything was fully covered.

But I can’t take it too personally.  After all, they were only about 13.  A 13-year-old boy saying jackassy things isn’t unheard of.  Once I had some time to think about it, the whole thing seemed like a rite of passage for them rather than a personal attack:  Get girl’s attention.  If girl ignores you, insult her thoroughly.

I can’t help wondering if they’ll regret it someday, or if they’ll push it out of their brains and forget about it completely, like I should.

Our car is dead.  Like DEAD dead.  It died on Friday, but I’ve been too pissed off and anxious to write about it until now.

We knew it was inevitable.  It was a used car to begin with, and in the past month and a half, it was having problems starting.  Mom was in front of a mechanic’s once when it just would not start, and he looked at it for her.  He said something about coils and pressure, I don’t know, I’m not a mechanic.  He gave it a terminal diagnosis.

The guy who sold us the car had brain cancer.  He passed away in June.  Now his car has gone on to The Great Beyond, wherever or whatever the hell that is.

Why the anxiety, you ask?  Well, there’s just something about not having a car that really fucking gets to me.  Not having a car reminds me of the times I was stuck in the ER alone – both with the Hysterectomy from Hell with resulting bowel and ovarian ruptures, obstructions, and abscesses (just mix-n-match, everything that could have gone wrong did go wrong), and when my gallbladder went into its final self-destruct sequence.  I know that these things aren’t directly related to being carless; it’s the memories of being alone that weirds me out.

Geez.  I’m an adult, and I shouldn’t…*sigh*…but am I the only one who wouldn’t want to be in the ER alone?

I’m not saying I’m going to be making any trips to the ER, I’m just freaking out for the sake of freaking out.  This is MY blog and I’m allowed to freak out.

In a way, it’s a relief that the thing has been officially “pronounced”.  Now we don’t have to worry about, “Oh boy, I sure hope it starts this time!” or, “We’d better keep it running so it’ll…keep running.”

The mechanic who diagnosed it took it for parts.

Rest in pieces, Shit-Mobile.

Our usual chef is experiencing technical difficulties, but Jodi has come to the rescue!

Appetizer
What are your feelings towards lightning/thunder storms?
I think storms are sorta scary, but sorta exciting.  I really hate it when they knock out the power, though, because most of what I like to do requires electricity.

Soup
Have you ever experienced an earthquake?
My mom says we had a small earthquake when I was a baby, but I don’t remember it.

Salad
Dry heat or humid heat?
Dry heat, hands down.  I lived in Arizona for three years, and people think I’m crazy when I say that it feels hotter here in Virginia during the summer than it ever felt in Arizona because of the humidity here.  When it’s humid, taking a shower doesn’t make me feel any cleaner – I feel just as sticky and gross as I did before getting in the shower.

Main Course
Are you a skier…snow or water?
Neither, I’ve never even tried.  Both activities would have the same end result – a trip to the emergency room.

Dessert
What are your top three favorite ice cream flavors?
Chocolate-chip cookie dough, Neapolitan, and anything that has both chocolate and caramel in it.

I could’ve adopted a kitten today.  A little mostly black kitten with a white fur locket on her chest.

I woke up this evening with an anti-nausea medication hangover, after trying to sleep the hottest and brightest part of the day away.  I checked my voicemail and there were two suspicious-sounding messages from my mom, “Hey…call me back.”  The tone of her voice suggested that she had something up her sleeve.

By the time I called her back, it was too late.  She was at the pool with Isaiah when she ran into the woman with the little black kitten.  The woman wasn’t 100% sure she was going to keep the kitten, but she was leaning toward it.  She already named the kitten Prada (a name I would never choose – I’d pick something inspired by astronomy).  The woman was obviously an animal lover, she already had a few dogs and birds, and my mom half-joked that a cat would help make her “collection” complete.

My mom and I both feel that the kitten was meant for her and not for me.  I don’t think I’m ready for another cat just yet.  It’s tempting, mostly because I’m not used to being without a cat for so long, but whenever I think about adopting another cat, my mind skips right to the part where that cat gets sick or dies.  I also fear that Dave’s spirit would be angry at me for replacing him so soon.

I still can’t help wondering about a lot of things, though.  When will I be ready for another cat?  Should I have adopted one already?  Am I even a good caregiver? 

The question that I keep coming back to is:  Will his soul come back to me somehow? 

I believe in reincarnation, firmly and absolutely.  I know in my heart that his soul is waiting for another body, if it hasn’t found one and jumped in already.  I also believe that groups of souls tend to stick together, both during a single lifetime and throughout time itself.

Since Dave’s passing, I’ve had dreams where I’m in the presence of another cat, a cat that always looks completely unlike him, but I know it’s him.  I can’t say for sure that those dreams mean that Dave’s soul will come back to me.  The dreams may just mean that I’ll be able to love another cat as much as I loved Dave.  Then again, the dreams could be totally meaningless – a simple product of my preoccupation with Dave, death, and cats in general.

No matter how I think about stuff or analyze the situation, I end up right where I started…wondering if we’ll meet again and when, or if our 12-year friendship was just a single five-minute acquaintanceship compared to the infiniteness of time.

*woot!*  The big two-oh.  It’s Friday, baby.

Appetizer
When was the last time you had your hair cut/trimmed?
January 11th, 2008 – five days before having my gallbladder removed.  It’s much easier to deal with things post-op when you have shorter hair, and I just felt like treating myself before going under the knife again.

Soup
Name one thing you miss about being a child.
Getting excited over little things – celebrating small victories.  Now that I’m an adult, I feel like if I’m not doing something amazing, it’s not worth feeling great about.  I beat myself up over not being able to do what everyone else does because of my poor health.  In reality, I should be proud of myself whenever I am feeling well enough to do stuff, especially considering I have days where walking, sitting, or getting out of bed are luxuries.

Salad
Pick one: butter, margarine, olive oil.
Butter, of course!  What planet do you think I come from?

Main Course
If you could learn another language, which one would you pick, and why?
I know a little Latin (studied it in middle and high school), and I’d love to pick it up again.  It’s a beautiful language.

Dessert
Finish this sentence: In 5 years I expect to be…
…happy.