Saturday, July 30, 2011

Words with Friends

I'm addicted. To Words with Friends.
See what you have done to me Apple!?

My sister kicked my butt in the first game (not really sure how--), so we started a new game.  I was just messing around with the letters, literally just in any old order. 

Suz played "action".  I put down "oolachan" using her "a" from action, knowing I would get that pop-up that says "this is not a word".  Except it is.  And it got me 61 points (35 point bonus for using all the tiles in my rack) and my sister is having a fit!

If you know what the word "oolachan" means, please enlighten me.  It doesn't even come up in any searches I've done on google, and I want to know why W.w.F. thinks this is an acceptable word.

In other news, I FINALLY got my Copyright certificate from the Library of Congress.  It only took them 4 MONTHS to send it! The paper it is printed on even smells official.

Over and out... Gotta be up in 5 hours to go pick up my aunt and my uncle from the airport!

Oh, PS- I also had to feed my uncle's snake today. If I were an eleven year old teeny bopper, my reaction would have been along the lines of OMG GROSS.  I put the mouse in the cage.  I pick up my phone to see if I can video Rachael (the snake) snatching mousey for lunch (so my mom can show her class).  I put the lid on the cage, turned around, and BAM mousey is gone.  So I hurried around to the other side of the cage, and (enter 11 year old teeny bopper alter ego persona) OMG OMG OMG THAT IS LIKE SO GROSS.  Rachael nommed that mouse on the head and then wrapped herself around it to swallow it whole. I know it is the circle of life and food chains and all, but seriously DISGUSTING. My sister had to feed Rachael the second mouse tonight, but as of 11:24 PM, Lars (the mouse, so aptly named by Emily) was having a staring contest with Rachael, though Lars had cuddled up against the slithering reptile mere minutes before.  I have a feeling this will not end well for Lars, despite Emily's affection for his cute, little ears.

Wednesday, July 27, 2011

Team iPhone... ???

Lots has happened since I last posted.  I keep telling myself to update my blog, and then I get busy or I forget.  Starting with last Friday...

The real feel temperature for the wedding was 112 degrees, according to  Getting the four boys ready and back to the church on time was no easy feat.  The boys looked devilishly handsome, and the bride looked stunning.  All in all successful.  Took about 150 pictures of the kids, but didn't really get the shots I wanted.  Also ended up with heat exhaustion (pre-cursor to heat stroke), and was sick from about 7pm until 9am the next morning.  I had to turn on my air conditioner downstairs (first time all summer), and slept in the AC for two nights. 

Monday the heat wave FINALLY broke- and the real feel temperature compared to Saturday was 35 degrees cooler.  It also rained, which helped settle all the dusty air that had been hanging around.  Monday was also the day that I gave up my beloved crackberry in favor of an iphone.  I'm still not sure it was the right decision, even though I do love apps.  And by love apps, I mean I downloaded 35 of them in the 6 hours following the purchase of said phone.

I'm still not used to it, which is probably why I wish I hadn't given up the blackberry:

Things I Don't Like About the iPhone Compared to my Blackberry
  • My e-mail doesn't just come through automatically, like it did on my blackberry.  E-mails push through every 15 minutes, unless I manually check for new ones.  Not crazy about this.
  • Ringtones = FAIL.  I tried making my own with Garage Band, but GB won't let me select the portion of the song I want, it just starts from the beginning and ends (randomly) at 18 seconds.
  • Sound controls leave a little bit to be desired.  It seems like you can go louder, or to vibrate.  I want the option to create my own sound controls- like I had on my blackberry.  I need to set it so that while I leave the phone on at night it will only ring if someone calls- not when I get a push notification or an e-mail or a text.
  • I miss bbm.  
  • I miss having a physical keyboard.
  • I really, really miss bbm. It was like a secret little club, with emoticons and no text limit.  Now I have no emoticons. And no "secret club".
Things I Like Better on the iPhone than I did my Blackberry
  • APPS, APPS, APPS.  I didn't have a single app on my blackberry.  This is partially because I didn't know how to get apps, and partially because my phone probably would have spontaneously combusted because it was a) old, and b) critically low on memory.
  • Better picture! The screen is bigger (duh, no keyboard), clearer, nicer.  I can actually read e-mails easily, without having to wait for anything to load or for anything to download graphics or pictures or whatnot.  Reading a forward (thanks Grandma) won't freeze my phone.
  • Sort of with the above, e-mail.  Though they don't automatically, instantly push through, it is so much easier to read them. I can also open links from e-mails easily and actually use them.  
  • My case is much prettier. Pink, of course... even though my blackberry was pink, I had a black case on it.
In other news...
Today we had a roofer come and look at our roof. We can't do anything downstairs until the roof is fixed.  But the roof can't be fixed. So this is an issue.  I suppose that is what we get for living in a depression-era house that was built like crap.  Basically, the entire roof needs to be replaced, the side of the house needs to be torn off and put back on, and the entire house needs to be re-bricked.  Aka, DISASTER ZONE.  So that's where we are today.  I would like to go to the beach, but no one else in my house is going... wah.

Friday, July 22, 2011

Mother Nature, please back off...

It is 10:15am in Brooklyn... and the temperature is a steaming 103 degrees.

The temperature inside my house is 96 degrees.

I have to get four boys, ages 9, 7, 5, and 4 ready for a wedding.  They have to be in tuxes.  There is no air conditioning where I am headed... I am hoping that Breezy Point is as cool today as it was yesterday compared to Brooklyn, and I am SERIOUSLY hoping that the Church is air conditioned... otherwise I am going to have a terrible time photographing this lot.

I have to get the rest of my stuff together, iron my skirt, and fight for the shower... all on 4 hours of sleep (thanks methotrexate)... hoo-freakin-ray.

Thursday, July 21, 2011

An update.

Today seems to be the first day in about three weeks that I feel normal. I'm no where near as angry as I was, and I even laughed today- a real, genuine laugh.

Of course, today is chemo day, which means this will probably be short lived. The chemo turns me into a complete lunatic. The methotrexate is technically a poison. It interferes with some enzymes which are involved in immune system function. Some of those enzymes that are affected are the ones that are involved in the production of folic acid. You need folic acid to produce healthy, actively growing cells. I take what is essentially an antidote to the methotrexate 12 hours after I take the dose, which helps with some of the side effects, but not all. The methotrexate is also metabolized by the liver, which means I'm really not supposed to drink alcohol. Ever. Coupled with the psycho-crazy screwed up enzymes and affected liver function, this medication sucks. I drink anyway, and so far my liver is just fine (thank goodness).

Anyway... It really frustrates me that I'm finally able to wake up and not want to die and I know that this poison is going to blow that to bits in about 18 hours.

In other news, tomorrow I will be doing some photography at a wedding. The bride is a fellow Iona alum, and the aunt to the kids I babysit for. I'm excited- I love weddings (even though they make me sad), and I love to take pictures. The kids are also super cute and are real hams so I know I will get a few really good shots. I have to charge my batteries and format my new memory card and clean my lenses too- I just wish I had more special effects lenses and stuff to take pictures. Gotta earn some money first, because photography stuff is hella expensive. I also have to find something to wear... crap. My least favorite part about going to events is that I never have anything to wear.

Last night I finally had a craving for a meal (first time in about a week), but of course this dish was one that I had in Rome. Not exactly easy to get. I tried to re-create the dish and it was actually pretty good. I had the leftovers for lunch today. Recipe after the jump, if you want to try it yourself.

Wednesday, July 20, 2011

My deepest, most sincere apologies.

“There are so many things I wish people knew about me, but I won’t say, because you don’t ask and when you do, you’re not truly listening.”

I’m depressed. I’ve battled with this since I graduated from College, which is understandable. Major life change, the loss of a lot of things that meant the world to me...

But over the past few months it has gotten progressively worse, to the point where I wake up in the morning and wish I was dead. The thought of death used to terrify me. It doesn’t anymore.

I’ve stopped responding to texts, to facebook, to twitter. I don’t post anymore on those social networking sites. I’ve been trying to disappear.

One of the parts that hurts the most? Only ONE of my friends has continued to text me while I’ve tried to pull away. Only one. And I feel terrible, and horrible for not responding, because he must be saying that I’m a huge bitch. I’m sorry. I am truly sorry. I just can’t handle what my life has become anymore, and I can’t hide behind a smile anymore.

There isn’t anything that can fix me, unless you can reverse the hiring freeze, confund my road test instructor so I pass, find me a job, with benefits, with a salary, so that I can buy a car and pay for insurance and pay rent to finally have a place of my own and some peace... unless you can find me a stable relationship with a guy who is understanding of the fact that I have a chronic illness, or even better, a cure for Wegener’s... unless you can free me from the prison that my life has become, there isn’t anything that you can do.

So it is what it is. And I hope those who read this (if anyone at all) can understand why I am trying to disappear. I’m sorry.

Tuesday, July 19, 2011

The Spoon Theory

I've been going through a lot of turmoil in my life the past few weeks, and I don't really know how to deal with it, which will partially explain my absence from most forms of social networking.

Anyway. A lot of my issues stem from having a chronic illness. I don't think I've ever posted this article on my blog before, so I will now. The following was written by Christine Miserandino, and can be seen here:

It really is a fantastic piece that explains a lot of what us "Spoonies" have to go through on a regular basis.

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

I'm MAD!


Monday, July 18, 2011

What I'm discovering...

"Sometimes you need to distance yourself from people, if they care they'll notice and if they don't, you know where you stand ."

General Musings of the day.

1. It's bloody hot. As in I'm totally melting. Dear Mom, air conditioning is not the enemy.

2. I'm slowly but surely pulling away from social networking. Partly because it just makes me crazy, and partly because I am forcing myself to write every single day.

3. I haven't answered a single text message from any of my friends in over a week. I should change that to friend, singular. And I apologize... and I promise to explain, just not now.

4. Hulu is great.

5. Why have I never really watched So You Think You Can Dance before?! I love it. It makes me miss Horizons so much. Doesn't help that Keith (Tyce) used to dance at the same studio as me. Perhaps I should try and find a tap class.

6. I learned how to parallel park today, and its basically the only thing I'm good at when it comes to driving.

7. I'm still unhappy with my life. I woke up this morning thinking exactly the same thing that I've thought for the past two weeks- This.Sucks.

8. It is REALLY hot.

9. I haven't had an appetite for the past two weeks. Highly unlikely.

10. I kind of hate my life.

Sunday, July 17, 2011

Untitled Fiction July 2011, Part 2

Day after day her thoughts turned to the way things had been. Sometimes the painful reminder of the sheer memory of being happy was enough to make her lose control. Unfailingly her body and her mind were paralyzed. It didn't even have to be a happy memory, per se, but a song, a smell.... even the faintest whiff of a guy wearing the same cologne brought tears to her eyes.

But why? Why was she still so broken-hearted over someone who had never loved her? Who had never wanted anything more than the convenience of their best-friends-turned-friends-with-benefits "relationship"? To someone staring in from the outside, their relationship, or whatever you wanted to call it, made no sense. No girl in her right mind would allow herself to be tortured as such.

Occasionally she allowed herself the slightest relief from the torture she put herself through. He had been there, after all, when her father had died, when she had gotten so sick and almost died herself... He had stayed with her each step of the way, even wanting her despite the puffy face, the weight gain, the mood swings. There had to be a reason why. But then again, as she always shifted the blame back to herself, she hadn't given anything back to him. In desperate need of being taken care of- and quite well at that, she had forgotten (if she had even known how in the first place) to reciprocate. She had never been privy to the inner clockwork of a functional relationship. No one in her family had ever stayed married, and she had grown up without a father.

She had wanted nothing more than for everything to work out between them. He had made her blissfully happy, safe, important, like she really, truly mattered. She certainly didn't feel that way anymore. There wasn't anything left. No ties to a place she once called home. No job, few true friends... endless arguments with her sisters, health that she couldn't count on, an endless pattern of medication, poisons that would decidedly keep her alive.... no place that she could call her own, no place to disappear to, to cry, to escape. It was all gone, and her best friend had gone too- all because of her mistakes, her errors. Was it truly her fault? She had initiated their first kiss. She had been too attached, too invested, too afraid. Not that it mattered anymore. He was gone, like everyone else, and she was alone.

Untitled Fiction July 2011, Part 1

Her story wasn't a love story, by any means. There was often more tragedy than anything else, and the perpetual bad luck that followed her like an annoying, invisible gnat on a sticky, summer afternoon was an all too present reminder of everything she had lost.

He had never been her boyfriend, thought she referred to him in that sense. Had he ever, actually loved her? She would never know. But she had loved him, almost secretly at first. Admitting to herself that she loved him was far more frightening to admit than it would have been to say out loud to him. Not that she ever had- of course. He had said it more than once, and immediately taken it back. Yet at the same time he had stayed by her side during the darkest days of her life, leaving as she had finally learned how to be happy again.

Months- no, years late, she still thought about him. Daily, with a terrible pang in her chest. Things had spiraled out of control in her life after an unthinkable tragedy had slammed her family into the farthest circles of hell. She was slowing losing the strength to fight against the rising tide, and needed him now more than ever.

But he wasn't there. He couldn't be there, he wasn't her best friend anymore, and she wasn't his. No matter how many times he insisted she could come to him when she needed someone to talk to, they both knew that it just wasn't the same anymore.
What she would have given, to lay in his bed, sobbing all of the pain and grief and fear away, head buried in the closeness of his arms as he stroked her hair and back, helping her feel a sense of safety that had long since disappeared from her life.

Now there was no one. She was painfully aware that she was alone. Lost in her own thoughts, tears swimming in her tired eyes, fear pumping through her broken heart, leaking through the still unhealed cracks, spreading its unforgiving poison through her body.

She needed someone to take her in their arms and tell her that someday things would be better. Not today, not tomorrow, probably not even next week, or next month... but someday.