Hello!
I can't believe that the last time I wrote in here, it was April.
Tonight I'm a little bit restless and so, I figured it was the perfect time to write!
(Dustin is sound asleep beside me, and usually he's the insomniac!)
I've been thinking about this blog and what I want for it - I think I'm going to write more about our upcoming wedding (which has been postponed, but that doesn't stop me from planning!) and our new home. I really want to take the time to decorate it the way I've always imagined. Dustin and I spend so much time at home, when we're sick, and I'd like to be our own little oasis. A place we feel 100% relaxed in!
Which brings me to my updates -
Back in April I wrote about how we were just about to visit our new town. Well, I got sick and that never happened. We ended up going back home to NJ for awhile instead. Dustin managed to get me an appointment at NIH (National Institute of Health) in Maryland and so, a couple weeks after we flew to NJ, we drove there and I stayed a couple of nights in the hospital. I was so sick and weak, I barely made it through the car ride. In fact we had to stop at a rest stop and it took all I had to keep from falling over in the bathroom stall and as we made our way to the car, I thought several times "Oh god, they're going to have to call the paramedics" - my heart was so fast, my blood pressure dropping. I was so, so weak.
Anyway, that experience was nothing short of a nightmare. At first I was woo'ed by the big, top-notch security building with its sparkling clean white hall ways. I liked the fact that I got my own little name tag and the nurses were familiar with my conditions.
It seems, at these appointments, that I'm always lured in by this dream I've had since I was 19 - that suddenly some doctor somewhere is just going to say "I get it! I got it! Here's what we can do to fix you!" It never happens and you'd think by now I'd accept that, but I don't. I just keep dreaming!
They took 16 tubes of blood one morning and my blood pressure dropped to 70/30. I thought I was going to die. The rest of my stay there it was incredibly low. They gave me some fluids and I saw a physician who specializes in Primary Ovarian Failure - a condition I was diagnosed with at 16; the most irritating, anger-provoking of all my health problems (namely because of the jackass endocrinologists I've had to deal with). As per usual, he was another jerk who wanted to blame my symptoms on being female and "sad" and possibly anxious, and maybe I was just imagining waking up at 3 am with my heart rate at 175, or my inability to tolerate any type of heat without fainting, or my random fever of 104, my bouts of weakness that send me to my knees. You know - just "sadness".
The funny (for lack of a better word) thing about the diagnosis of Primary Ovarian Failure is this: Regardless of your attitude, your feelings about the future, your goals, yadda-yadda-yadda - as soon as you receive this diagnosis you are pegged as a sad, grieving, infertile woman. If you're like me and have other health issues along with this god forsaken diagnosis, good luck. You'll be told over and over and over again that you need to just come to terms with your diagnosis and move on with life. There's always "in vitro" - you know, because you so want somebody else's eggs inside of you, because you are so-so-so hurried/rushed/crying/aching ready to have babies.
News Flash: I have never cared.
I wish I could wear a T-shirt to every doctor I saw in the last ten years that said that, because it really is the truth.
The thing that has been bothering me all these years has nothing to do with infertility and everything to do with the fact that I'm young, I should be healthy and active, and I am not. My symptoms are real, debilitating, and scary and nobody has much of an explanation as to why. My ovaries suddenly failing before they could even start and sending me into, essentially a post-menopausal state (leaving me with osteoporosis and the added bonus of high cholesterol/increased risk of heart disease) was always on the second shelf for me, because I was too busy fainting and being unable to stand. That type of thing will usually take first priority.... I mean, infertility is a crappy diagnosis, but when you're unable to stand or sometimes even sit, you're not thinking about much else. Trust me.
I was an unusual child. I loved Montel Williams so much that I bought his book one year. Why Montel Williams? Because I was always at home, sick, unable to go to school and Montel, he was like the best teacher in the world. Sure, I can't even tell you where Asia is on a map and I mix up my countries with continents and I only just learned to tell time a few years ago ... but Montel taught me about life! I would sit there with the lunch my mom had packed me the night before, smiling at the TV, thinking "This guy is a genius!"
He had a few episodes about adoption and suddenly I was like eight years old crying in front of the TV, begging my mom to let me adopt a child. Somewhere along the line I forgot I was a child!
It's probably one of the strangest things about my life.
When other children were playing house, I was playing "orphanage", dressing my baby dolls in ragged clothing (which I sometimes cut up myself!), putting on my nicest dress, and walking into my bedroom. I'd stand there happily, look to the side at my imaginary husband, and say "Which baby should we adopt?" and then walk out holding my new son or daughter, smiling proudly.
I did this a few times a week; different dolls, same smile.
It's as though God was preparing me - or no, it was simply "to be" from the time I was a baby myself. Fate, destiny, all of the stars aligning, so that I could be 1 in a 100, 000 women who's ovaries suddenly say "See ya!"
It was the very first thing I said to my pediatric endocrinologist, who diagnosed me at sixteen. He looked at my labs, looked at me, and essentially told me I'd never have my own children.
I shrugged my shoulders, thinking about my boyfriend at the time, and my high school singing performance next week, and a bazillion other things that seemed so much more important. He looked at me firmly, no emotion, just waiting for me to turn from a happy, normal teenager to an infertile woman.
"I've always wanted to adopt," I said, smiling.
He frowned.
For years I didn't get it. The reaction. The lack of expression. The way they all seemed to snicker when I mentioned adoption, and in turn, they'd mention in vitro and how it was a great option for me.
I was sixteen. It was like mentioning a nursing home to a 40 year old. I didn't get it or care.
The endocrinologist at NIH- he wanted me to agree that I was upset about something that I've always seen as a blessing, not a curse.
Sure, it has probably lead to my complex medical issues, and sure, it would've been nice to have my hormones all nice and balanced, but I was the right woman for it to happen to. Not because my own biological children wouldn't be wonderful, but because I have the heart to adopt a child who already exists and is familyless. It's kind of amazing when you already know something in your heart (even from childhood!) and then life basically says:
"Guess what.. that feeling you've got? That passion, that empathy, that little idea you've carried around since you were little yourself?
Bingo. Go with it."
Some women are devastated at the diagnosis of infertility. I've seen infertile women on support group forums who's daily lives consist of FSH readings and the search for one, single story of hope from some other woman out there. They're broken, they're desperate, they feel empty inside. They focus on the one thing they don't have, even though I'm sure many of them have wonderful husbands and families and homes. They just can't see past it. They do the "why me?" thing over and over. They become infatuated with the idea of pregnancy. The very thought of being "barren" disgusts them. The word "adoption" scares them, belittles them. Many of these women are perfectly healthy otherwise. They live seemingly normal lives. They just feel a deep, aching grief.
I feel for them, but I'm lucky enough that I just don't understand it.
Years ago, I thought maybe I'd get that way as I got older.
Nope. Still waiting....
God - it's so weird. I never know how to act at these appointments. How do you convey to a doctor that you're not one of those women, you're just sick? It's hard enough to get a doctor to believe you're actually sick these days, period. Nonetheless, get them to believe it, when you have this looming stereotype over your head.
Poor Dustin. He was hurting for me after NIH. He really thought it would be my answer. He thought they'd help me get better. He saw me so sick day in and day out and he went out of his way to get me that appointment. I told him the same thing would happen, and he just couldn't understand. "They're the top specialists," he kept telling me.
I nodded my head. I'd already been to three "top specialists", some of the coldest, rudest people on the planet. (Planet. Yes. Seriously. There are alien specialists somewhere out there who are nicer! I know it!)
He was shocked. He sat there with me as this idiot blew me off, shrugged his shoulders about my syncope episodes and all of the other crap that comes along with it. He told me to take estrogen, see a therapist, and move on, basically. He stared at us with "I know your kind." eyes and proceeded to ask us personal questions about our life.
I was at such an exciting place in my life (still am!) and told him so. Engaged to an amazing man, about to move away on our own, planning our wedding ... but sick. Before I could even say "I just want to feel better", he was out the door and we suddenly realized all the time and money we invested into our trip there was wasted.
Disappointing, but expected, nonetheless. In a deep down, "I was praying someone would prove me otherwise", kind of way.
I didn't know I'd end up writing about this tonight. I just had planned to briefly describe my NIH visit and then move onto all of the fun, exciting things I've been up to here in North Carolina, but I guess this has been weighing on my heart all along. It's something I've never shared with anybody before. Except for my mom and Dustin. It's so long and confusing, so backwards and twisted, I guess I never had the energy to explain it all. But that's it. In a nutshell...
Ridiculous, isn't it?
Monday, October 3, 2011
Goodbye Jax!
In just four days we'll be leaving Jacksonville.
I can't believe it.
As much as we complain about it, I know we're going to miss it.
This is where we met, where we fell in love. It's also where we met some amazing friends and had the experience of a lifetime. So many memories here. It's hard to say goodbye.
When I moved here, I wasn't sure what life held in store for me. I never could have dreamed of what happened. I was hopeful that I'd come here, make friends, get some good doctors, and feel like my life was moving forward in one way or another. It felt like my life was on pause for so long and I was eager to do something, anything to see some positive changes occur.
But honestly - I felt like I was being pulled here. There are so many things that could've prevented me from getting here. When I look back, even I realize it was kind of a crazy thing to do. Nobody back home was encouraging me to go. I could tell most of my family thought it was going to result in disaster. I was scared. I was moving to a city I'd never even been to. At the time I was so sick and weak and I remember wondering how I'd even make it through the airport, nonetheless how I was going to manage a move.
Ironically enough I'm laying here wondering the same thing about this next chapter in my life!
The big difference now is that I'm not leaving everything behind in Jacksonville-
My soul mate, my future husband, is coming along with me!
Aahh, I am forever grateful for this city and for all of the people and circumstances that lead me here. Words cannot describe. In fact, I have never been able to find the appropriate words to describe our love story or my feelings for him. From the very beginning, I could not accurately describe the draw I felt towards him - the way I looked out the window, saw him, and instantly felt like I wanted to be closer to him.
The excitement and butterflies that I felt when he first said to me, "There's not a thing I don't like about you." That second in time when I knew he was going to tell me how he felt and I could not wait to let him know I felt it too.
We were sitting on a curb in this very apartment complex; both of our hearts racing (feeling weaker by the minute because of POTS!). I remember the look on his face during that moment in time when we both knew it could be the beginning of something really special, the way we walked around hand in hand. I was weak and dizzy, but could not have been happier.
It was like the moon and the stars were lit up just for us....
And now, we're off to the next chapter of our adventure! North Carolina, here we come!
I can't believe it.
As much as we complain about it, I know we're going to miss it.
This is where we met, where we fell in love. It's also where we met some amazing friends and had the experience of a lifetime. So many memories here. It's hard to say goodbye.
When I moved here, I wasn't sure what life held in store for me. I never could have dreamed of what happened. I was hopeful that I'd come here, make friends, get some good doctors, and feel like my life was moving forward in one way or another. It felt like my life was on pause for so long and I was eager to do something, anything to see some positive changes occur.
But honestly - I felt like I was being pulled here. There are so many things that could've prevented me from getting here. When I look back, even I realize it was kind of a crazy thing to do. Nobody back home was encouraging me to go. I could tell most of my family thought it was going to result in disaster. I was scared. I was moving to a city I'd never even been to. At the time I was so sick and weak and I remember wondering how I'd even make it through the airport, nonetheless how I was going to manage a move.
Ironically enough I'm laying here wondering the same thing about this next chapter in my life!
The big difference now is that I'm not leaving everything behind in Jacksonville-
My soul mate, my future husband, is coming along with me!
Aahh, I am forever grateful for this city and for all of the people and circumstances that lead me here. Words cannot describe. In fact, I have never been able to find the appropriate words to describe our love story or my feelings for him. From the very beginning, I could not accurately describe the draw I felt towards him - the way I looked out the window, saw him, and instantly felt like I wanted to be closer to him.
The excitement and butterflies that I felt when he first said to me, "There's not a thing I don't like about you." That second in time when I knew he was going to tell me how he felt and I could not wait to let him know I felt it too.
We were sitting on a curb in this very apartment complex; both of our hearts racing (feeling weaker by the minute because of POTS!). I remember the look on his face during that moment in time when we both knew it could be the beginning of something really special, the way we walked around hand in hand. I was weak and dizzy, but could not have been happier.
It was like the moon and the stars were lit up just for us....
And now, we're off to the next chapter of our adventure! North Carolina, here we come!
Friday, April 29, 2011
Monsters bearing gifts
When I was about 13, I went through a dark, "woe-is-me" phase like many adolescents do. I was always bitching about something. I had stacks of notebooks with morbid, depressing poetry that I'd written on teary, lonely nights. I liked to walk around Hot Topic and look at all the goth clothing, but never really bought any. Truth is I knew as angsty I was, I could never fully pull it off. Inside I was much too sweet and innocent. Naive too (but smart enough to realize I was). I did get some fuzzy, leopard prints though and a black shirt that had the word "popular" crossed out on it. I wore my eyeliner extra heavy on days I felt pissed off at the world. That was about as far as I went with that whole phase.
I was mad at the world, but too shy to scream about it. Instead I confided in some friends, who were also angry at life. One of them in particular was just as lost and scared (that's what all angry children are, in reality; lost and scared, right?) as me. She and I sat around listening to dreary music and called ourselves "the different ones". In doing that, we were trying desperately to change our feelings about ourselves. By openly saying we were different, we were voicing "hey! we're proud of it!", but of course, that was all pretend. We weren't proud. I wasn't anyway. As much as I loved being an individual, I wanted to be liked. All teenagers do. I'd spent years before that asking myself over and over why I felt different and why wasn't I popular. I hated all of the things about myself that made me unique. The only difference about me, compared to most kids, is that I refused to put on an act. When someone made fun of me for something, as hurtful as it was, I never backed down or pretended to be anything else. I knew that the day I started doing that, I'd lose myself. And as much as I disliked myself sometimes, I loved myself enough to not want to change.
Those days have long passed. I went to high school, made amazing friends and grew confident in who I was. Slowly but surely I became an adult (when did that happen?!) who wished she could go back in time and reassure her little-girl self that things weren't as bad as they seemed. Over the years I became a much more positive person. My dark poetry was replaced with upbeat, optimistic writing as I learned each day to notice the bright side of everything. I started fully believing that everything in life happens for a reason and with this realization nothing seemed that upsetting anymore. Even when it came to dating, as heartbroken as I was at times, I was always able to say to myself "It happened for a reason. He's not the one." and move on without looking back.
My new found outlook and attitude didn't come out of nowhere though. I had to hit rock bottom a few times before I really started to see what was happening. Sure there are some things in life that are terrible, no matter how you look at them. It's never fair and some days are really daunting. I still get angry at times. I still look up at the ceiling and ask "Why me?!" some nights.
I was doing that last night.
Laying in a hospital bed with wires spewing out of my gown, I couldn't help but wonder why I've had to suffer so much recently. I collapsed on Wednesday just trying to get to the car. My poor mom (who's visiting from NJ) and Dustin had to call the paramedics because for about an hour after that I was unresponsive. I can remember their worried faces hovering above me while I laid in bed too weak to say anything. As weak and woozy as I was, I remember thinking, in a very hazy, blurry way, "Is this seriously my life?!"
Since I've been struggling with my health I've tried a few times to write the type of poetry I wrote as a teenager. I sit there with pen and paper and try to let all of my frustration and fears fall onto the pages.
Every single time I've attempted it, the same thing has happened. The ending is always hopeful. Even on my worst of days - since becoming ill, I cannot write a hopeless, "life sucks" poem. They always start out sorrowful, but end with something encouraging.
I just now realized why that is. It's because my health did something incredible to me - it made me both weak and strong at the same time. It took away everything I thought I knew and loved, only to allow me to realize that all of the things in life that I thought were vital weren't. I lost my job. I lost a lot of my friends. My Summer concert tickets were wasted (which at the time, I was beyond crushed about). I couldn't even drive my car. Initially I thought my life was over. I kept desperately trying to feel better and giving myself a time line. "I need to be better by July so I can go on the camping trip!" "I need to get better by August so I can see the Black-eyed Peas!" "I need to get better by September so I can go to college!"
In the end, none of those things happened.
For awhile there I thought, "Not only have I lost everything. I'm nothing."
I equated all of my missed opportunities and lack of accomplishments as a clear sign that I was not good enough/of lesser value than my peers, who had already experienced so much more. I was embarrassed, a shamed of the illness that had robbed me of so much. I didn't give my friends the details about it at first. When I first began dating as a chronically ill person, I lied about it. In the end though all that did was paint a picture of someone I'm not; it let people think that my life (no college, no job) was my choice. Without explaining why, people thought what they wanted and somewhere along the line, I began thinking the way I knew they were thinking. I began believing that I was lazy, not determined enough; a failure.
And then somewhere along the line, I realized I wasn't all of the things I didn't do. I was all of the things I was doing. I realized that I was a fighter who lived every day to the fullest despite my limitations and challenges. I started to admire myself in a way I hadn't before. I started to believe in myself. I became my own best friend, and from there on out, I decided to let myself believe in miracles and in happiness.
Over the last seven years I continue to fight to for better quality of life. The truth is, no matter how bad it gets, I'm never going to quit. Some days I'm going to feel like giving up, giving in, letting go. I have times where I'm so weak, so ill, in so much pain, that I feel unfixable, broken.
I know the road ahead of me isn't an easy one, but it is my road, and I'm going to trust that despite its bumps and detours, it is still paved with beautiful things.
Obviously, my situation now is a far more challenging one than the struggles I endured as a teenager, but still-
I'm going to remind myself on a daily basis that back in my dark-poetry days I felt like there would never be a light at the end of the tunnel and now here I am, wishing I could tell my teenage self that there, indeed, was. And that all the things I was worried about back then weren't really worries at all.
At some point in the future my older self is going to do the same thing - I'm going to look back and say "I wish I could've told myself things were going to get better. Because they did."
But regardless of what happens, I'll always be blessed for the insight and spirit my illness has given me. It's like a scary monster that arrived in my life unexpected, uninvited, but with gifts for me. I didn't have to accept those gifts, but I did. And I'll continue to.
(This was yet another time when I wrote something expecting, wanting it to be a pessimistic rant, but it ended up being exactly the opposite.)
I was mad at the world, but too shy to scream about it. Instead I confided in some friends, who were also angry at life. One of them in particular was just as lost and scared (that's what all angry children are, in reality; lost and scared, right?) as me. She and I sat around listening to dreary music and called ourselves "the different ones". In doing that, we were trying desperately to change our feelings about ourselves. By openly saying we were different, we were voicing "hey! we're proud of it!", but of course, that was all pretend. We weren't proud. I wasn't anyway. As much as I loved being an individual, I wanted to be liked. All teenagers do. I'd spent years before that asking myself over and over why I felt different and why wasn't I popular. I hated all of the things about myself that made me unique. The only difference about me, compared to most kids, is that I refused to put on an act. When someone made fun of me for something, as hurtful as it was, I never backed down or pretended to be anything else. I knew that the day I started doing that, I'd lose myself. And as much as I disliked myself sometimes, I loved myself enough to not want to change.
Those days have long passed. I went to high school, made amazing friends and grew confident in who I was. Slowly but surely I became an adult (when did that happen?!) who wished she could go back in time and reassure her little-girl self that things weren't as bad as they seemed. Over the years I became a much more positive person. My dark poetry was replaced with upbeat, optimistic writing as I learned each day to notice the bright side of everything. I started fully believing that everything in life happens for a reason and with this realization nothing seemed that upsetting anymore. Even when it came to dating, as heartbroken as I was at times, I was always able to say to myself "It happened for a reason. He's not the one." and move on without looking back.
My new found outlook and attitude didn't come out of nowhere though. I had to hit rock bottom a few times before I really started to see what was happening. Sure there are some things in life that are terrible, no matter how you look at them. It's never fair and some days are really daunting. I still get angry at times. I still look up at the ceiling and ask "Why me?!" some nights.
I was doing that last night.
Laying in a hospital bed with wires spewing out of my gown, I couldn't help but wonder why I've had to suffer so much recently. I collapsed on Wednesday just trying to get to the car. My poor mom (who's visiting from NJ) and Dustin had to call the paramedics because for about an hour after that I was unresponsive. I can remember their worried faces hovering above me while I laid in bed too weak to say anything. As weak and woozy as I was, I remember thinking, in a very hazy, blurry way, "Is this seriously my life?!"
Since I've been struggling with my health I've tried a few times to write the type of poetry I wrote as a teenager. I sit there with pen and paper and try to let all of my frustration and fears fall onto the pages.
Every single time I've attempted it, the same thing has happened. The ending is always hopeful. Even on my worst of days - since becoming ill, I cannot write a hopeless, "life sucks" poem. They always start out sorrowful, but end with something encouraging.
I just now realized why that is. It's because my health did something incredible to me - it made me both weak and strong at the same time. It took away everything I thought I knew and loved, only to allow me to realize that all of the things in life that I thought were vital weren't. I lost my job. I lost a lot of my friends. My Summer concert tickets were wasted (which at the time, I was beyond crushed about). I couldn't even drive my car. Initially I thought my life was over. I kept desperately trying to feel better and giving myself a time line. "I need to be better by July so I can go on the camping trip!" "I need to get better by August so I can see the Black-eyed Peas!" "I need to get better by September so I can go to college!"
In the end, none of those things happened.
For awhile there I thought, "Not only have I lost everything. I'm nothing."
I equated all of my missed opportunities and lack of accomplishments as a clear sign that I was not good enough/of lesser value than my peers, who had already experienced so much more. I was embarrassed, a shamed of the illness that had robbed me of so much. I didn't give my friends the details about it at first. When I first began dating as a chronically ill person, I lied about it. In the end though all that did was paint a picture of someone I'm not; it let people think that my life (no college, no job) was my choice. Without explaining why, people thought what they wanted and somewhere along the line, I began thinking the way I knew they were thinking. I began believing that I was lazy, not determined enough; a failure.
And then somewhere along the line, I realized I wasn't all of the things I didn't do. I was all of the things I was doing. I realized that I was a fighter who lived every day to the fullest despite my limitations and challenges. I started to admire myself in a way I hadn't before. I started to believe in myself. I became my own best friend, and from there on out, I decided to let myself believe in miracles and in happiness.
Over the last seven years I continue to fight to for better quality of life. The truth is, no matter how bad it gets, I'm never going to quit. Some days I'm going to feel like giving up, giving in, letting go. I have times where I'm so weak, so ill, in so much pain, that I feel unfixable, broken.
I know the road ahead of me isn't an easy one, but it is my road, and I'm going to trust that despite its bumps and detours, it is still paved with beautiful things.
Obviously, my situation now is a far more challenging one than the struggles I endured as a teenager, but still-
I'm going to remind myself on a daily basis that back in my dark-poetry days I felt like there would never be a light at the end of the tunnel and now here I am, wishing I could tell my teenage self that there, indeed, was. And that all the things I was worried about back then weren't really worries at all.
At some point in the future my older self is going to do the same thing - I'm going to look back and say "I wish I could've told myself things were going to get better. Because they did."
But regardless of what happens, I'll always be blessed for the insight and spirit my illness has given me. It's like a scary monster that arrived in my life unexpected, uninvited, but with gifts for me. I didn't have to accept those gifts, but I did. And I'll continue to.
(This was yet another time when I wrote something expecting, wanting it to be a pessimistic rant, but it ended up being exactly the opposite.)
Tuesday, April 26, 2011
Blueberry muffins
I can't believe it! In just a few days, we will be in North Carolina, in the town that we're planning to move to. Most people think we're crazy and I admit - picking out a town online and deciding "Hey! Let's move there!" is probably a bit out of the ordinary. I feel lucky though. Lucky that we're still young and our options are wide open. Neither of us have ever felt tied to the towns we grew up in; we always envisioned ourselves living somewhere else.
South Jersey isn't as bad as "Jersey Shore" makes it out to be. There are a lot of down to earth, nice people in the town I moved from. It definitely has its fair share of Snookies and The Situation's, though. Dating was impossible there. Once I went on a date with a guy who said he was a soil scientist. Trying to start conversation, I pointed to the ground next to us (we were at an ice cream parlor) and said "What type of soil is that?" (I know.. it was a lame question, but that's just a reflection of the type of conversation we were (weren't) having) and he said "DIRT." I think that was when I started dating foreign guys (which had its own BIG problems, *cough* green cards, *cough*)... and then I landed here in Jacksonville, met my sexy West Virginian and my NJ dating woes finally came to an end. But anyway!
South Jersey... in the Summers, it's packed with tourists - people from Philly who come with their beach chairs and sunscreen, after repeatedly bragging to friends back home "We're going to the SHORE." They walk the boardwalk like they own it. I haven't been to the boardwalk in awhile..after the first 30 times, it loses its appeal. It becomes nothing more than some wooden planks and over-priced salt water taffy. If you've heard something about Jersey's beaches being unsightly or dirty, you heard right. They're overcrowded. The last time I went I put my towel down and three seconds later a group of teenagers stepped right over it. That's when I gave myself permission to stop pretending I liked the beach. I don't - it's hot, the sand gets everywhere (on the towels, in your food, in the car) and there's something gross about under-aged girls in bikinis and old dirty men with glasses in the same sentence. If somehow I acquire my own private island, I'll go now & then. I'll leave NJ's beaches for people a little more "Jersey" than me.
When I was 8 years old my parents took me to the mountains in Maine. We did a little bit of hiking and ate a lot of lobster. I remember looking at the mountains, feeling smaller than I'd ever felt in my life, and thinking "I want to live here someday." I was so taken aback by them. The people in Maine were so friendly. People smiled, people waved. I felt like I was in a whole different world. That started my obsession with drawing log cabins in my school notebooks. I was never much of an artist, but I'd draw them every chance I got and just stare at them. I'd imagine myself living there, with a beautiful yard with acres and acres of land.
I've dreamed up all types of things since then - being a famous singer, an actress, an occupational therapist, a traveling photographer, owning my own business, running off to some other country... but truth be told, my biggest dream is probably also the simplest of all of them.
I want to bake blueberry muffins in the mountains somewhere.
I'm serious! That's it. That's all.
And the older (and sicker, let's be honest-) I get, the more it appeals to me. Sure, I still want a lot of things for myself. I want to write a book. I want to start a business. But more than all of those things, I just want a quiet, simple life.
Dustin had me laughing the other day. He was explaining why he likes taking walks so much and he said "I'm a simpleton! I just walk along and smile at nothing. I just like to walk." Apparently some security guards at an office building he passed by thought that he looked suspicious. They saw how he was taking everything in, just observing the palm trees, the pond, the traffic on the other side. They thought he wanted to rob the building. They were disappointed when they all they found in his backpack was a Subway sandwich.
But that's what life is about, isn't it? (No, not Subway sandwiches.) Just taking everything in, the little, simple things, and enjoying them. At the end of the day, when my health has ruined my plans and it feels like it's interfering with absolutely everything, I still have the simple, beautiful moments. I still have Ginley next to me, all warm, with his little brown eyes. I still have the sunlight pouring through the window in my bedroom. I can still feel the softness of my blankets and the closeness of Dustin when he holds me.
I hope we go to this town and love it. There is no "perfect" town. There's no perfect anything, but I'm proud of us for making a decision that a lot of people never even consider. We really had to look into our hearts and ask ourselves what was most important to us and what would really accommodate our health. It was an amazing feeling to realize that there were choices we could make that could benefit us, could change our lives even.
We get homesick a lot and our families will always be one of the most important things to us, but we need to build a life that is ours. We need a chance to figure out what's going to be best for us, as a young couple, but not just any young couple - one facing the obstacles of chronic illness.
Life is an adventure and I'm so happy that despite how sick we are sometimes, we still let it be one.
I can't wait! North Carolina, here we come!
Saturday, April 23, 2011
Jacksonville
Really sick today, with joint pain and low blood pressure. We've been sitting around all day. Some days it feels like this apartment is getting smaller and smaller. I tried to stand outside on the patio, but the heat quickly made me sicker.
And that got me thinking about all of the things I hate about Jacksonville.
Here's the official list:
You know a city is bad when it makes you miss New Jersey....
And that got me thinking about all of the things I hate about Jacksonville.
Here's the official list:
- The traffic : As if being chronically ill doesn't give you enough limitations and restrictions, the traffic here severely limits us from going out when we want to. For example, if we, God forbid, wake up past 11 o'clock on a Saturday, then we have to come to terms with the fact that the traffic will now be miserable for the rest of the day and night and then judge whether or not we're up to driving in it. (And I'm usually not, as of lately.) Driving is difficult when you're dizzy as it is. Add a hundred cars whizzing past you and people cutting you off or not letting you get into the next lane, and the dizziness turns into wooziness which turns into a feeling of "Why the hell am I even allowed on the road?" and pulling over wondering how I'll make it back.
- The lack of trees: When I first moved here, I knew I would miss the trees in my yard at home in Jersey, but never could I have fully comprehended how much I'd miss them. I miss them in a soul-saddening way, as though I've lost something dear to me. These palm trees, as tropical-vacation as they are, do not qualify as trees. Not to me at least. There is something too perfect, too man-made about them, especially when they are sporadically planted in an apartment complex that is reminding me more and more of a department store each day... which brings me to my next complaint:
- This apartment complex reminds me of a department store: Each building is the same. I dare you to find any differences among them. I think one day I'll secretly go out and buy little lawn gnomes or an ugly plant and place them in random places around this complex, if not just for my own entertainment, but also because I seriously have trouble differentiating where I am when I take walks. I have gotten turned around, lost, not knowing which building is mine. The only other place that has happened to me? The mall. But that is, by far, not the most commercial thing about this complex. We have a "leasing office", situated next to an internet cafe and a gym (which is nice), but there are realtors there working every single day. These are the same people we pay our rent to. They wear high heels and business dresses (in Florida's heat!) and they drive around on golf carts showing potential customers the model apartments. So if I'm on my patio painting my nails, wearing pajama shorts and a tank-top, I get a dirty look from the realtor like "Girl, you are destroying my business." Home. Sweet. Home.
- The heat: I know, I know. Why did I move to Florida if I don't like the heat? The simple answer is I sometimes make decisions with my heart instead of my head. I would never change that though. Life would be so dull! But still - I'm going to complain anyway. The humidity feels like a plastic bag suffocating you. You step out into it and the first thing you think is "I'm going to die" as your heart rate climbs ever so quickly and your knees get that wobbly, jello, "we're going to let you down" feeling. Someone walks by "Hello!" and starts a conversation with you, and you're like "Oh dear God. Please shut up. I barely hear you. My ears are ringing, my heart rate is about 200, and I'm going to pass out if I don't find cold air." Seriously- once I resorted to piling ice packs on myself during a car ride. We can't take walks during the day, only in the evenings. We watch people walk by wearing jeans, listening to their ipods, walking along with no care in the world. We stare out the window like, "How the hell are they doing that?" as we turn the a/c on cooler and bitch about Jacksonville to each other. For the record, humidity+heat+any health condition that involves low blood pressure, tachycardia, or fainting=awful, awful idea.
- Attitudes: I just asked my honey, "What are some other things we hate about Jacksonville?" First thing he said, "The attitudes." and I knew exactly what he meant. Don't waste your time smiling at someone here in Jacksonville, you will not receive a smile back. People give me dirty looks all the time here. I don't know what it is I'm doing. I've come to the conclusion that there are just a lot of miserable people here. Poor Dustin - he went grocery shopping once, had a cart filled with fruit, and some guy walked by with his girlfriend and made a comment about him "being a fruit". He looked right at him when he said it too. That offended me for 3 reasons... one, I love gay people. Two, I love fruit. And three, my honey is clearly not gay.
- The healthcare here (or lack thereof): I thought New Jersey's healthcare was bad, and then I moved to Jacksonville. I was under this impression that Mayo Clinic could at least provide me with decent healthcare. Boy, was I ever wrong. My apologies to anyone who's a Mayo Clinic patient and has had a good experience, but my current opinion of them could not be worse. They treat healthcare like a business, much like the majority of doctors in this country. They accused me of giving myself adrenal insufficiency, suggested I stop my medications (which would KILL me) and sent in a psychiatrist to speak with me, as I laid there with a bruised swollen foot. Yes, I was there with a visible foot injury that required an x-ray and that was the "care" I received. That's nothing compared to the way Dustin was treated during his last visit. He was made to urinate in front of the doctor for drug testing. If that's not bad enough, he was billed for it. Mayo Clinic is only the beginning though. Out of all the doctors we've seen here, we've only been happy with one. We were unable to find a general practitioner who had an ounce of compassion or knowledge about our conditions. One was so hostile, treating us like we were criminals on trial and continuously repeating that we need specialists (like we didn't know that? Like we'd ever trust her treating his epilepsy or my adrenal problems? Ha. Think again.) - that she'd only treat us for colds and flus. She must've said that twenty times with a scowl on her face. She made us both so uncomfortable and stressed out that we physically got sick.
You know a city is bad when it makes you miss New Jersey....
Friday, April 22, 2011
The light in my life
My fiancée (I never knew a person could love a word so much - fiancée, fiancée, fiancée. I want to say it all the time, because calling him "boyfriend" never did seem quite right) is sitting on the floor counting change. Actually, he says, "I was doing something dorkier than that. I was weeding out the pennies. Because what do you use pennies for?" and he's saying/doing something so ordinary, but his smile lights up my heart.
Today is a low blood pressure day. I woke up dizzy and nauseous. Weak as ever. I've pretty much been in bed all day, aside from getting dressed. The first thing I did when I woke up? Eat potato chips. That's when you know your life is weird; when you wake up, eat potato chips and it's because you're doing something good for your health. Never could I have guessed that I'd have such a love affair with salt.
Growing up, my mom always fed us junk food. We lived off of Wawa's fruit punch and lemonade, which was sugar and water (but mainly sugar). My older sisters liked to work out so they were always drinking gallons of water, and I thought it was gross. These days I drink a lot of it, sparkling water too. I'm one of those people who orders water at restaurants. I never thought I'd become one of those people. These days I drink and eat for health.
We have so much to do today and it's already 2:30. We need to clean this apartment and get packing. We're moving! I can't believe it. Just last August I moved here to Jacksonville. I knew I wouldn't be here forever, but how could I have ever dreamed that I'd meet the love of my life here and immediately want to start a life with him? How could I have dreamed that both of us would share a love of small towns or the desire for a slower paced life? That both of us would love the mountains and open fields? I'm so lucky that my life has contained things that even I could not dream up. Magical, miraculous people and places and things that were placed in my life at exactly the perfect moments. No matter how many obstacles were in my life or how much my world felt like it was crumbling around me, somehow, some way, the stars aligned - and I'm lucky.
Now if only my blood pressure would rise a little so we can start packing !
Today is a low blood pressure day. I woke up dizzy and nauseous. Weak as ever. I've pretty much been in bed all day, aside from getting dressed. The first thing I did when I woke up? Eat potato chips. That's when you know your life is weird; when you wake up, eat potato chips and it's because you're doing something good for your health. Never could I have guessed that I'd have such a love affair with salt.
Growing up, my mom always fed us junk food. We lived off of Wawa's fruit punch and lemonade, which was sugar and water (but mainly sugar). My older sisters liked to work out so they were always drinking gallons of water, and I thought it was gross. These days I drink a lot of it, sparkling water too. I'm one of those people who orders water at restaurants. I never thought I'd become one of those people. These days I drink and eat for health.
We have so much to do today and it's already 2:30. We need to clean this apartment and get packing. We're moving! I can't believe it. Just last August I moved here to Jacksonville. I knew I wouldn't be here forever, but how could I have ever dreamed that I'd meet the love of my life here and immediately want to start a life with him? How could I have dreamed that both of us would share a love of small towns or the desire for a slower paced life? That both of us would love the mountains and open fields? I'm so lucky that my life has contained things that even I could not dream up. Magical, miraculous people and places and things that were placed in my life at exactly the perfect moments. No matter how many obstacles were in my life or how much my world felt like it was crumbling around me, somehow, some way, the stars aligned - and I'm lucky.
Now if only my blood pressure would rise a little so we can start packing !
Thursday, April 21, 2011
Clock In The Sky?
Why did I decide to name my blog "Clock In The Sky"?
Because I was laying here, staring at the screen, trying to come up with something meaningful that described my life and I asked myself, "Is there any one phrase that could somehow define my life's experiences?" and immediately it came to mind.
And so, I guess my first blog will be somewhat depressing, but I figure - it's not the happy, care-free moments in our lives that define us. After all, if I think about the traits I possess that I'm proud of (the things that make me me!) it's clear that I've acquired those traits because of the struggles I've been through; the pain that I've felt. I am not my struggles, however - I am the strength and determination that washed over me in the midst of them.
"Clock In The Sky" is from a time when I had frizzy hair with straight-across bangs (that my mom cut), a clumsy little out-fit from Goodwill, and a shy, blank face. I was about ten years old. I was a little bit different. Okay, maybe a lot-a bit different. I wrote poems while walking and whispered them to the air; a lot of them started with "Thou Shalt" - I think I was trying to be Shakespeare. I made pamphlets citing all of the reasons why people shouldn't smoke and threw them out my window, sure that all of the right people (the smoky, lungs-getting-black ones) would find them. I cried a few times when the kids at recess jumped in the piles of leaves - I jumped in leaf piles at home, but something about the way they did it, so loud, so energetic .... it seemed mean. I put my hands over my ears because the crumbling sound hurt me.
Pale-faced and tired, I trudged through the hall ways at school feeling like I was walking through snow some days. My legs heavy and weak at times, I wondered how the other kids seemed to race on by me.
I wondered how they ran down the bike path for gym class. They did it with such ease. I'd be holding my side (a stabbing, sharp pain behind my rib) and wheezing, blocks behind them. My best friend Miranda was often there with me. We'd both be out of breath, occasionally exchanging sad glances.
Once we made it to the field, I'd sit on the bleachers looking up at the sun, so as to give my eyes a reason to water in case they did on their own. The other kids were already playing, shouting and kicking a ball back and forth. My side would still be throbbing, but the nails-scraping-against-stomach feeling would kick in and over power it. My palms would sweat, hands shaky and white. I can still remember how, after gym class, my palms would have little indentations in them from my own nails - because I'd ball up my fists so tight.
Our gym teacher was an athletic woman, probably in her forties. She was my own personal Wicked Witch of the West and only God knows how many times I prayed for a fairy godmother. It's amazing how helpless children are. I've looked back at this time over and over again and it seems I should've been able to change the situation - but I was just a kid, and kids are pretty powerless. And that is exactly how I felt for those years. Powerless. Like life was spinning out of control. I was dizzy and sad, and unable to do a thing about it.
Once on the field, pushed into a frantic game of soccer, I stood there staring into space. I watched the ball go back and forth. I watched the kids chase after it. It was so effortless; at times, almost graceful. It was a dance I didn't know. A dance I couldn't take part in -because every time I tried, the world got cloudier; the way my parent's car windows fogged up on a cold, rainy day. I liked to write my name in it and then look through the letters and be grateful that I could see through them - that things were still clear.
"KYLI!" she'd yell. "GET THE BALL!", "PAY ATTENTION!". My whole body tensed up. I was frozen still. I could do nothing, but listen to the shards of glass in her voice and feel them tear up my already hurting stomach. I inched towards the ball, pretending to try to do something I knew I could not do. The ball moved too fast, it was never where I thought it would be. My legs and feet were clumsy and wobbly. I'd hold my breath, feeling like a spot light was on me. And it was. The sun - burning into me, like it hated me too. Like it was saying "You loser... kick that ball!" And then, some other kid would kick it (and usually me in the process) with force I could not begin to understand. I'd take a few steps to the side, trying to slowly ease myself out of the game.
That's usually when she'd pass by me. "You stupid idiot," she'd whisper, "You can't do anything. Can you?"
And that's when I'd see the clock in the sky.
The clock in the sky was big and round - with a friendly, familiar smile. I liked to imagine it's face, grandfatherly and warm. I liked to imagine he was encouraging me, comforting me. More than that though, I loved his hands. They weren't anything special, except for how they moved. They moved fast. Faster than the kids chased after the ball, faster than Mrs. Gym teacher could run, faster than real time moved. 11:39 could turn into 11:45 in a blink of an eye. One quiet line of a poem recited aloud and six minutes could pass on their own. "The time clock, the time clock..." I'd repeat to myself. Once she heard me saying it, and she shook her head and screamed at some other kid. "KEEP IT UP AND I'LL WRING YOUR NECK!" she said to him. And he was her favorite.
After about two years of that, I fell to pieces one day and made sure everybody knew about it. My parents, after months of hearing about her, but not truly understanding the situation, were forced to do something about it. Suddenly I was the kid with a social worker and an "older sister" (I hadn't known I needed one before that... I had 3 already!), but none of that mattered because after that I spent gym in the library. Safe and sound. My friend Lori had a deformity of the knee so she spent it there with me. We read books and wrote stories, and my stomach felt better.
These days I face different struggles. Mostly with my health. They leave me feeling powerless often; like the little kid I was on that field. It's funny though - as scary as health can be, and as much as it weakens me and leaves me feeling option-less, I still feel so much stronger than I did back then. It's amazing what privileges we have as adults... it took me a long time to realize I was in control of my own life, of my decisions. For a long time when someone or something was hurting me, I felt like I couldn't do anything about it. Now I know better.
Health is the one thing that hurts me and gets away with it though.
And when it does, and all else fails, wherever there's a sky, there's also a clock.
And time always moves on, moves forward. And there is always another day up ahead where life is easier, better... and that makes everything worth it.
Because I was laying here, staring at the screen, trying to come up with something meaningful that described my life and I asked myself, "Is there any one phrase that could somehow define my life's experiences?" and immediately it came to mind.
And so, I guess my first blog will be somewhat depressing, but I figure - it's not the happy, care-free moments in our lives that define us. After all, if I think about the traits I possess that I'm proud of (the things that make me me!) it's clear that I've acquired those traits because of the struggles I've been through; the pain that I've felt. I am not my struggles, however - I am the strength and determination that washed over me in the midst of them.
"Clock In The Sky" is from a time when I had frizzy hair with straight-across bangs (that my mom cut), a clumsy little out-fit from Goodwill, and a shy, blank face. I was about ten years old. I was a little bit different. Okay, maybe a lot-a bit different. I wrote poems while walking and whispered them to the air; a lot of them started with "Thou Shalt" - I think I was trying to be Shakespeare. I made pamphlets citing all of the reasons why people shouldn't smoke and threw them out my window, sure that all of the right people (the smoky, lungs-getting-black ones) would find them. I cried a few times when the kids at recess jumped in the piles of leaves - I jumped in leaf piles at home, but something about the way they did it, so loud, so energetic .... it seemed mean. I put my hands over my ears because the crumbling sound hurt me.
Pale-faced and tired, I trudged through the hall ways at school feeling like I was walking through snow some days. My legs heavy and weak at times, I wondered how the other kids seemed to race on by me.
I wondered how they ran down the bike path for gym class. They did it with such ease. I'd be holding my side (a stabbing, sharp pain behind my rib) and wheezing, blocks behind them. My best friend Miranda was often there with me. We'd both be out of breath, occasionally exchanging sad glances.
Once we made it to the field, I'd sit on the bleachers looking up at the sun, so as to give my eyes a reason to water in case they did on their own. The other kids were already playing, shouting and kicking a ball back and forth. My side would still be throbbing, but the nails-scraping-against-stomach feeling would kick in and over power it. My palms would sweat, hands shaky and white. I can still remember how, after gym class, my palms would have little indentations in them from my own nails - because I'd ball up my fists so tight.
Our gym teacher was an athletic woman, probably in her forties. She was my own personal Wicked Witch of the West and only God knows how many times I prayed for a fairy godmother. It's amazing how helpless children are. I've looked back at this time over and over again and it seems I should've been able to change the situation - but I was just a kid, and kids are pretty powerless. And that is exactly how I felt for those years. Powerless. Like life was spinning out of control. I was dizzy and sad, and unable to do a thing about it.
Once on the field, pushed into a frantic game of soccer, I stood there staring into space. I watched the ball go back and forth. I watched the kids chase after it. It was so effortless; at times, almost graceful. It was a dance I didn't know. A dance I couldn't take part in -because every time I tried, the world got cloudier; the way my parent's car windows fogged up on a cold, rainy day. I liked to write my name in it and then look through the letters and be grateful that I could see through them - that things were still clear.
"KYLI!" she'd yell. "GET THE BALL!", "PAY ATTENTION!". My whole body tensed up. I was frozen still. I could do nothing, but listen to the shards of glass in her voice and feel them tear up my already hurting stomach. I inched towards the ball, pretending to try to do something I knew I could not do. The ball moved too fast, it was never where I thought it would be. My legs and feet were clumsy and wobbly. I'd hold my breath, feeling like a spot light was on me. And it was. The sun - burning into me, like it hated me too. Like it was saying "You loser... kick that ball!" And then, some other kid would kick it (and usually me in the process) with force I could not begin to understand. I'd take a few steps to the side, trying to slowly ease myself out of the game.
That's usually when she'd pass by me. "You stupid idiot," she'd whisper, "You can't do anything. Can you?"
And that's when I'd see the clock in the sky.
The clock in the sky was big and round - with a friendly, familiar smile. I liked to imagine it's face, grandfatherly and warm. I liked to imagine he was encouraging me, comforting me. More than that though, I loved his hands. They weren't anything special, except for how they moved. They moved fast. Faster than the kids chased after the ball, faster than Mrs. Gym teacher could run, faster than real time moved. 11:39 could turn into 11:45 in a blink of an eye. One quiet line of a poem recited aloud and six minutes could pass on their own. "The time clock, the time clock..." I'd repeat to myself. Once she heard me saying it, and she shook her head and screamed at some other kid. "KEEP IT UP AND I'LL WRING YOUR NECK!" she said to him. And he was her favorite.
After about two years of that, I fell to pieces one day and made sure everybody knew about it. My parents, after months of hearing about her, but not truly understanding the situation, were forced to do something about it. Suddenly I was the kid with a social worker and an "older sister" (I hadn't known I needed one before that... I had 3 already!), but none of that mattered because after that I spent gym in the library. Safe and sound. My friend Lori had a deformity of the knee so she spent it there with me. We read books and wrote stories, and my stomach felt better.
These days I face different struggles. Mostly with my health. They leave me feeling powerless often; like the little kid I was on that field. It's funny though - as scary as health can be, and as much as it weakens me and leaves me feeling option-less, I still feel so much stronger than I did back then. It's amazing what privileges we have as adults... it took me a long time to realize I was in control of my own life, of my decisions. For a long time when someone or something was hurting me, I felt like I couldn't do anything about it. Now I know better.
Health is the one thing that hurts me and gets away with it though.
And when it does, and all else fails, wherever there's a sky, there's also a clock.
And time always moves on, moves forward. And there is always another day up ahead where life is easier, better... and that makes everything worth it.
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