The Beauty of Snow

Do you feel it?  Or smell it?

Snow has a specific smell that takes over the air.  Such a weird statement but if you grew up in New England, you may understand the idea of being able to smell a snow fall approaching.  
I love the sight of snow falling, especially at night.  It seems as if the whole world stills for those first few minutes of the storm and a silence drops on our busy lives.  When the snow is untouched? That's complete beauty.

In case this snow starts tonight or tomorrow, please be safe friends. 

A New Normal

I have been thinking a lot about this blog.  About the title of it. About the description of it.  And why I began this blog in the first place.

When I started this in 2010, I didn't want the repeated answers of family and friends questions about my condition.  My blog was a way for me to share all my medical problems and vent with all the problems I faced at such a young age.  For most of my blog, I was questioning what I was going through and why it took forever for me to be diagnosed with colitisis.

As the years went on, I embarked on my new normal.  This included taking medications daily instead of being the "healthy" girl who only took medication during headaches.  It was regular blood work and being on a first name basis with most of my doctors and the people in their office.  This also included the highs and lows of having this disease that many people are not able to see.

Since May, I have another new normal that I have been trying to navigate.  The new normal of not having my dad around.  Most times I fail at the attempt of surviving the world without my dad.  Sometimes I believe he is looking down on me and smiling at the woman that I am.  But other times, I fear that I'm not being strong enough to make him proud.  Silly, I know because my dad was proud of everything I do.  But he was always my biggest cheerleader and I want to make him proud of the woman that I am and how hard I am trying to float in this new normal.

I'm sure this all doesn't make sense.  Dad used to joke with me that most of my posts were just rambling about a whole lot of nothing.  But I haven't changed how it has always been.

If you are willing, I'm still navigating through this New Normal of mine and I plan on documenting that journey a little better.  I hope you will join me in this crazy ride and see the life I want to lead that will make my father happy.
 

Let it Be.

One of my greatest fears is getting a flare up due to my ulcerative colitis and unfortunately, it seems like I'm in the midst of one now.

There are some diseases or conditions that people suffer every day that we don't know the type of struggle they face day in and day out.  Every time I hear of someone with the same condition as me, a part of my heart breaks because I know the pain they can suffer if their medications don't work. 

At the current time, mine seem to be failing me.

Unfortunately, this means that I often have to justify the pain of eating because I need to enjoy the taste of the food rather then avoid it and deal with the hunger pains.  I have to deal with the looks of concern from my mom whenever I have pains in my stomach that makes me need to pause a show we are watching.  And I have to be a rock of strength during the especially tough times because I don't like having this condition be a weakness.

A few weeks ago, when my face broke out like crazy, I found out that I was on some "big" medications for such a "young girl".  Not going to lie, those confessions from the nurse practitioner and another doctor scared the crap out of me.  These medications that wear down my immune system? Yeah, not very much fun.  The medication that makes me tired all the time?  I love not being able to work a normal nine to five job without being exhausted by the end of the shift.

Ulcerative colitis is something I would never wish on one of my enemies, let alone to anyone I love.  I am lucky to have a great support system whenever these lows come around to try and make me smile, and forget just for one moment that I am not normal.

 

Tomorrow I'm going to an engagement party.  I personally can not believe I have come to the time of my life where I will be attending engagement parties and bridal showers.  Where I will be having to buy wedding presents and pretty dresses instead of what will survive a crazy college party.

When I dress up in my cute dresses, I almost feel like I'm playing pretend.  The "formal" night on the cruise made me feel as if I'm a child in an adult body never understanding the proper way to act because she hasn't grown up completely.  But I like this whole trying to become an adult thing.  Part of me feels as if I will start to get the hang out this growing up thing, eventually.

I know that the child in my will always be there though.  Just check out the picture in the post below where I'm dressed up in a beautiful dress but making faces along the way.  I'm totally fine with that.

Thanks to my wonderful work schedule this week, my list of things I need to accomplish before my trip seems like a mountain when it really is just a bump along the road.  Packing, laundry, nails, calls to all sorts of places, and packing again, I don't know how I'm going to get it all done.

But I just have to remind myself, I will be in Miami on Friday morning as everyone I know heads to work.  Does that make this all worth wild?  Yes, yes it does.

And while I am nervous about this whole cruise thing due to my wonderful health issues, I'm so excited to be able to go on vacation with some of my favorite people and spend my days in the sunshine.

Sunshine makes everything better.

Anything Can Happen....

Boy, oh, boy is 2013 welcoming me in with open arms.

I haven't been feeling well and while I try to grin it and bear it, it's starting to suck to always be sick.

I've been getting countless blood work done, and my INR does not budge at all.  I'm on a very high count for the Warfarin and nothing is changing week in and week out.  I try to keep smiling and keep a positive attitude with everything, but sometimes it's very tiring.

And I don't think most people around me understand how truly draining this whole thing is.

I have become a sort of recluse since the first of the year.  Other then a quick overnight trip to Boston, I have stayed home basically every weekend because I either become too tired early in the evening, or just don't have the energy to pretend.  Yes, I've had a boring social life, but I don't want to continue being the sick girl.  Instead, I just stay in my house, and read books and watch different T.V. shows.  Hello guilty pleasures.

Tomorrow I get to talk to my inside doctor and basically tell him that he could proceed with trying to get some more tests done to determine whats going on with me.  I was nervous about the whole new insurance thing, but now that I called Human Resources, I have a little more faith that I won't be without insurance at any point after turning 26.

But here's to a better few weeks where the stomach gets magically better.  Guess I gotta keep the positivity flowing somehow....

I'm Just the Same As I Was....

Confession time. 

I'm terrified that this blood clot, and flare up happened to me again.  I'm also terrified that I will get more blood clots whenever I have these stupid flare ups.

And being scared is not a way to live your life. 

It's funny.  I have put a huge smile on my face and cracked jokes about a name and those types of things.  But the truth is, I don't want people to feel sorry for me.  Ever see that look come across someone's face when something bad happens to you?  Imagine every single person giving you that look.  Most of the time, it's encouraging to know I have people that care about me that much to actually care.  But sometimes, it's a kick in the stomach.  Because I just want it all to go away.

I'm 25 years old and this is my second (or third if you want to count each one once) blood clot in two years.  It's my third trip to the hospital with the whole stomach thing.  And every time I'm growing tired of constantly trying to look on the bright side of this thing.  

I have been told by countless people that I am strong, which I am so freaking thankful for those words of encouragement.  Anytime I hear that, I get empowered to fight this thing a little longer. But I just want a few months, maybe even a full year, where I don't have to worry about what I'm eating, or going to the hospital, or stopping my daily life because my leg is in pain.

I have not been as concerned this go around and I have tried to keep positive the best I can.  I mean I'm able to go to work. I'm able to go out with my friends.  I'm able to eat some stuff.

But.....One year universe.....is that too much to ask? Please.

This is me feeling sorry for myself on a Friday morning.  Like really, I'm excited the weekend is upon us, and that I have a wonderful Halloween costume in my POWER color.  I mean how is a girl not supposed to feel beautiful in RED

Living Just to Find Emotion....

If there is one thing I want to do, it is make an impact on someone's life.  When people tell me they always see me with a smile on my face, or that I always look happy, that means a lot to me.   It makes me realize that we can project an image to those around us, and if a smile on my face can make someone's day, then that is amazing.

But I want to make a change.  When I was younger, I had the idea of making a change with wanting to be a teacher.  And I'm not saying I'm giving up on that dream, but I am thinking that my dream, at least for now, has changed.  I want to help people who aren't as lucky as I am to have amazing friends or family.  I want to help my friends who have done so much for me.  And I want to help good causes.

I don't know how to start this great change that I have in my mind.  Sometimes I don't think it's possible, but then I'm reminded that my smile sometimes makes people's days.  Go figure right?

At a quarter of a century old, I think it's about time for me to actually start doing things.  Just take that leap of faith and soar.  Yes, this may be a complete cliche, HOWEVER, if I ever want to be successful in jumping Signal Rock, I gotta be open to jumping in all aspects of my life.  Because life is not going to sit around and wait for me.  There have been a handful of times I have taken the plunge and been brave.  And all those times have been pretty successful.  

So I'm thinking it's about that time again.....to be brave for myself.  To start making a change in my own little world.  To smile a bit more because you never know who just needs that smile to make their day a little bit better.

I Gotta Confession to Make....

Last night I finally saw Dark Knight Rises.  And as much as I hate to admit it, I had tears in my eyes at the end of the movie.  I don't cry during the sappy lovey-dovey movies, but during a super hero movie.....I have to hold back tears.  Really?

If you haven't seen it, I think you need to run out to see it.  I'm not gonna lie, with the violence that went down in Colorado, I got nervous whenever a gun scene broke out.  But I thought the whole movie was amazing and was definitely worth the money/three hours of movie time.  

Who would have ever thought I would enjoy these types of movies?  I never did, and at the end, I was so excited that the director left a possibility of more movies being made.  Greg told me that only three movies were going to be made, but I cross my fingers that's a rumor.

Can we also just talk about how I want to be Catwoman for Halloween, if only it wouldn't be one of the most popular costumes out there now?

Throwback Thursday: Ocean Avenue

Today, as I was taking a nice little walk, my IPod shuffled to "Ocean Avenue".  Now for those of you who don't know this song or even this album, I guess you weren't a huge fan of music back in the early 2000's.  

This song reminds me of high school and the idea of summer.  I mean, the title of the album is Ocean Avenue, how can one not think of the beach and spending the time at the beach with your friends.

I love everything about this song, minus the music video.  I love the lyrics.  I love the whole CD. I love how it brings me back to singing this in a car with my friends (mostly Meggie) in the car.  I love how even to this day, I still will sing this song out loud whenever I hear it.  

Tonight, I was discussing the song with Shannon and Meghan before trivia.  And Shannon completely agreed that this was THE song of high school.  Now I know that there were other songs we fell in love with in high school because in high school you think everything means so much.  But the thing is, if you ever hear this song if you are in your mid 20's, you immediately think of high school.  For me, it's a wonderful memory.

I discussed this with Tom and his friend Adam back on my birthday, this whole album was a non skip album.  You could listen to every single song of this CD and not skip ahead because a song was bad.  Shannon agreed tonight.  Take the time to go back to your high school days, or wherever you were six-ish years ago.  And it will honestly make you smile.  Where you want to turn up the whole CD and just jam to it the whole afternoon.

Do What You Love.

I have not read through this whole list.  But when you see online that someone has completed a list of secrets and tips to share with the world, that definetely means I need so share that website with whoever is still reading this thing.


Some of these things I whole heartedly agree with.  I feel better when I do work out, whether that be running or dancing, I feel better.  Which is why I'm trying to start working out again.  And the sun?  It's amazing, although I believe they should say life becomes so much easier at the beach.


Starting your day off right is completely important.  This summer I was told every morning that I was beautiful.  While I don't necessarily need someone to tell me this, hearing it from a very important person in my life always made me wake up with a huge smile on my face.  Which is another life secret.


The most important thing I think on the list is about love.  Do what you love, surround yourself with people who love you and keep the people you love close.  I try to push people away, and I do apologize for that, but I try very hard to keep those people I love within my inner circle.


And by inner circle I mean in arms length to give a huge hug to whenever they need it.


So whoever still reads this bad boy, please click the link down below.  And expand your life with these helpful tips and secrets.

Little Life Secrets

My leg has been hurting.

There is the truth.  Laid out on this blog.

I don't know if I'm gonna have to deal with this for my whole life which if I do will suck completely.  I have been working 6 days a week for the past few weeks and my leg has been having twinges in it.  At the end of the day it's as hard as a rock, and not in a good in shape way.

This brings my greatest fear to light.  That this blood clot will never really leave me.  That they still don't know why it came about so who is to say it's not going to knock me on my ass again sometime soon.  That I am never going to not have some sort of pain or discomfort if I'm on my legs for long periods of time. 

I'm afraid I'm never going to be fixed.  Actually, I know I'm never going to be.  I take 3 different medications and 3 different vitamins throughout the day every day.  That will eventually be brought down to 2 different meds, but still.  If I screw up with the medication I will be having a flare up.  Last time that happened I ended up in the hospital.

Who is to say that anyone will want to deal with this?  I know I don't.  It's almost a year and I'm already sick of the whole stomach thing, and the doctor's appointments and the blood work.  I was thinking about it last night, and it truly sucks to know that I'm gonna have to go to Dr. I probably every 4-6 months.  I don't know if that will change but at the moment it looks like that is my life.

I don't know why I have been so preoccupied with my whole endeavor recently.  Actually, I do.  I have too much time on my hands to think about it.  This summer was one of the best times I had had in years.  And when I try to share that with people, they don't understand how they could have made me so happy.  They still do, but seriously the best part about this summer was I forgot I had been sick, or that I will have to deal with this for the rest of my life.  I have always believed that summer is a special time, but this year sure proved me correct.  I'm just waiting for the train to get back on track, because I know it will.  I can not help but believe it.

I Wish Nothing But the Best For You

Growing older is a funny thing.  When I was younger, I only worried about myself.  My own pain.  My own happiness.  My own fun.  I was the center of the universe and everyone should be at my beck and call to make me happy.

As I got older, I realized that I had to start depending on myself and not expect others to worry about how to entertain me whenever I need them to.  But it's not only that.  I realized how much I worry about other people and how other's happiness affects my own.

This year has been a great learning experience for me.  While I was wallowing, I was also worried about how my terrible mood was affecting my family, even though it may not have seemed like it at the time.  I held a lot in during this whole thing because I didn't want to worry my family.  Hence, my hospitalization in April.  But not only that, I didn't want them to worry about me when I was stuck home and they had to go to work.

Same goes for my friends.  I didn't want to ruin their breaks or weekends with my sob stories about how I couldn't move or how painful the freaking clot was.  I never asked for anyone to come over because I didn't want them to be pulled down due to my misfortune.  

At 24 I realized that I am not the center of the universe, and that when other people, my friends, my family and even extended circle is hurt, it makes me really upset.  My mood is affected by those who I care about.  My "inner" circle?  I never want them to be in pain.  I always want them to be happy and with smiles on their faces.

And let me tell you, I understand how difficult it was for my parents this year to see me with the clot and the stomach thing.  Because no matter what, they wanted to see me smile.  And now all I want is to make those around me smile as well.

Diaries from a Power-less Girl Part 1

I had written the following while power was out during the hurricane.  I'm finally getting around to posting these here....

 Generators.


They are a life saver for hospitals and homes that take care of the elderly.  Of government buildings (at least I assume this) so our officials can make informed decisions. And for homes that are destroyed by storms, say like Hurricane Irene.


But my goodness, they are so effin loud.


And sometimes a method of showing off.


Does a generator need to be on all day for you?  Absolutely not.  Should it be on until ten o'clock to light your driveway on a pitch black street?  Probably not.


So this post is basically based off jealousy.  But this storm has brought an early civilization feel that is completely killed when a generator is heard though out the whole neighborhood.


Would it be nice for you to offer the neighbors anything if needed?  Yes.  My boyfriend's family has basically opened their house to me, and my family, even if I'm the only one to take the offer.  But if all I had to do was walk a small distance to a noisy house for a shower, or even a community meal, I wouldn't complain.


More ramblings from a power-less girl to follow....

Want to know how I know my friends and I are growing up?

We have started to read and ask each other for book recommendations.  Instead of talking about the different shows we watch throughout the week, or about the nights out in the club, we discuss who has what book and who can get the book next.

So I have read a few books, and wanted to share my opinion about them to whomever still reads this.  To those who know me, I love reading, and while I don't review every one that I have read, I do like to share the ones I enjoyed a lot.

First and foremost is a book that is being made into a movie which is coming out this Friday.

Now before everyone judges me reading this book because it's coming out as a movie, it's been on my list of books I need to read for a while.  Many months ago, I read a blog about books that were turning into a movie and this one was stuck out to me.  This book looks into one day of these two characters lives for twenty years.  Seriously, it's just one day, and you get a little bit about their lives throughout the year but you understand what these two characters endure throughout the year.  I enjoyed this because it shows two friends who make sure to be in each other's lives no matter how different their own roads diverge from one another.

I had one problem with the book and that was the ending.  It was a bit confusing, and by confusing I mean I didn't like how abruptly it ended.  I did have a bit of trouble getting into the book, but when I did I loved it.  I can say however I was terribly disappointed at how it ended.  

I have never read Jodi's books contrary to some amazing things I have heard from friends. I tried to read one, but got bored within a few chapters and called it quits.  This book however, I could not put down.   It was amazing.  I didn't want to hang out with the boy because I wanted to finish this book.  It may have been because the central character had Aspergers and I loved another book that had the protagonist with Aspergers.  This book had each chapter in a different character's prospective and even had different fonts for each character. And I don't want to give too much of the plot away, but everything, from the daily tasks that this family goes through, the the trouble that the trial puts the family in, I loved it.  Seriously loved it.


Now I'm reading another book that I'm not sure what I feel about it yet but it's early yet.  I haven't been reading much recently because I have been going out after work and spending time with the boy before work.  But don't worry I will be sharing more opinions about books I have read.  I really do enjoy both of these books and if any of my friends want to read them, they are more then welcome to borrow them.

Crazy Nightmares Go Away

Last night I had a dream....or maybe it was more a nightmare.  And when I think back to it, I can't help but laugh because it's not really scary.  But during the course of the dream, I was terrified.

Anyway, the dream started with me attending Midnight Madness at Gampel.  I don't know why I was there, only that I couldn't really see everything that was going on.  And I was upset about it because I kept trying to find a place to see properly.  And for those who know me, not being able to see UCONN basketball, unacceptable.

Anyway from Gampel I ended up at the hospital for some reason. I don't know why I was there, only that I was sitting in the room I stayed at when I was in the hospital.  But I was in there with a bunch of doctors, I feel like there were four there, and not one of them were talking to me.  Don't get me wrong, every one of the doctor's were talking, only they were talking to each other.  And there I was on the hospital bed, trying to speak my mind but they were not listening to me at all.  I was basically having a panic attack over the fact that the doctor's weren't listening to me.

It's very telling to how I felt while I was at the hospital back in May. Only thing is I was having this dream in August and I can not for the life of me understand why I'm having this dream now.  I haven't really had any visits with a doctor who piss me off.  I mean I have to call Dr. I about the blood work results from last week, but that's only because they didn't send it to him directly like they normally do.  That I am fine with.  But the idea of me talking without being hear?  Not a fun feeling, let me just TELL you.

To some this may not feel like a nightmare, to me I woke up with a start. Not only did I not understand what was happening to me, but I also did not like feeling like I wasn't being heard.

Sometimes, I Need to Get Out of My Own Head

There have been times in my life that I pull away from my friends.  Or at least in my head I pull away from them, for no reason in particular, but I don't talk to them as much or hang out with them as much.  Like I said, there is no particular reason I do this.  Part of me believes that I want to see who is willing to break down these walls.  But I don't think it's fair or nice to put your friends through tests.

Another part of me wonders if I do this because I don't like to get too close to people.  Throughout my life, a lot of people I have been close with have gone away without any explanation.  Perhaps our friendship wasn't as strong as I had originally thought, but maybe I do this whole wall thing because I don't want to be hurt like I have been.

I'm not going to say I am in a funk like I was when I was sick because I am not.  I'm happy.  The only thing that is missing for me though is my friends.  And it's mainly my fault because I'm doing the backing away thing.  If you are reading this and telling me I'm crazy, I already know this.  But I feel like I have not seen or talked to anyone in months which makes me really sad.

This group of friends I have now are unbelievably supportive.  They have been there throughout the Henry stage, they were there the week I was in the hospital, and they just are always there if I ever need anything.  But I haven't been hanging out with them as much as I used to and I don't know why I'm doing that.

I promise to do better for the rest of the summer.  Or at least try.  Because I really do miss my friends.  And the calm nights we have....and don't laugh, because compared to a few nights in recent weeks, we really do have calm nights.

So to my friends who may still read this, I'm sorry I have not really been hanging out with you or getting in touch with you.  Know that everyday I think about you all and do miss having you in my daily life.  I wish I could explain why I suck at keeping in touch, but I really do....exhibit A. is Stacey, the one friend I kept when I moved outta New Haven.  Love you guys more then you know