new year's resolutions.

I never used to make New Years' resolutions. I was one of those people who always proclaimed them as stupid, cliche, and things that you said only because everyone else was. Most people forgot about them by February, anyway, I used to reason. As I got older, I started to see them more like guidelines - things that you could post on Facebook if you really wanted to, but if you ended up failing at.. well, they didn't really count, did they? By the time I was a working professional, I stopped thinking about them at all.

This year, I'm seeing things differently. By definition, a resolution is "a firm decision to do or not to do something," "the action of solving a problem, or contentious matter," according to the dictionary. It's something you do, on your own, to rectify something you've been having difficulty with or anticipate having difficulty with in the future. Simply put, it's a promise to yourself. It doesn't have anything to do with a public post on Facebook or making surface-level commitments just to join the fad. So I thought about what I have been really struggling with and want to change in the new year, and this is what I came up with - my resolutions:

pain you just can't ignore.

They say it takes 66 days to form a habit.  Habits can be something beneficial - starting a new diet to lose weight and become healthier - or something bad, like starting drugs.  This is a habit neither good nor bad, something neutral that I never asked for and certainly don't want.  My mind and body are fighting this lackluster routine every step of the way. Sitting on the couch hour after hour, leg propped up on pillows and being brought the things I want: it sounds like a dream to some. But when your biggest desire is to be able to walk down the stairs correctly, with both ankles and knees pumping and flexing, to simply grab a glass of water, it's not such a pampered lifestyle after all.

It's been six weeks since I developed the blood clot in my leg and not much has changed. I'm on my fourth blood thinner, a shot called Arixta, because none of the other medications have changed the size of my clot at all. It hasn't decreased in size at all and I'm baffled to how that could be. How can I have suffered through all of this pain for these past weeks, endured not being able to walk properly or very far, not being able to stand for more than a few minutes at a time, and still my clot is the same. It feels like all of this has been for nothing.

the new normal: life with a blood clot.

Whenever I watch a movie or television show where a character experiences some life-changing event, something that really shakes up their life, I think to myself, "Did they see it coming?" Did they sense anything different in the days or hours or minutes leading up to the seconds that turned their life upside down? Did they sense a change in the wind, a subtle vibration that made their hair rise up and planted a question in their mind?

I don't know about them but for me, I didn't notice a thing. Even up until the very last second, I was completely oblivious and looking back now, it makes me feel like an idiot for not noticing anything at all.

Two weeks ago, on the 22nd of January, I was getting ready to watch the Packers game on television when I got a sharp pain around my belly button. I hadn't eaten anything strange but sometimes I get random pains around my body so I didn't think much of it. As the day progressed, the pain increased and moved up under my ribcage. It was so sharp that it hurt to walk and move around, and I thought maybe I had contracted the stomach flu that was going around. Later in the day, the pain shifted to below my belly button and finally to my right lower quadrant. After having my training in the medical field, I was worried about my appendix, but I didn't have a fever, wasn't vomiting or throwing up, and didn't have any other symptoms, so I brushed it off.

By Tuesday night, the pain hadn't gone away and I was still having difficulty moving around. It hurt with every step, I couldn't bend over, I had to sleep in a completely horizontal position, and sitting on the couch wasn't comfortable no matter how I sat. With much reluctance, I asked my mom to take me to the emergency room.

what's been going on lately.

Since I haven't posted in so long, I wanted to do a health update for those that are curious about where I stand with my health currently. It's been almost a year since I posted one of these and although not much has changed, a few things have.

oh, what a night.

I have always been a night owl, staying up into the wee hours of darkness, way past the times when everyone else bows out to call it a night.  I'm the person burning the midnight oil and even long past that - typically awake until four or five AM, on a reverse schedule of most humans, sleeping during the day and wide awake while the rest of the world sleeps. In high school and college it made for extremely difficult class schedules and I was perpetually tired and falling behind.  It used to drive my parents nuts and was always a bone of contention between us.  When I found a job working evenings, it was perfect and even though it's been years since I was on that shift, I've never gotten out of the habit of keeping those hours.

I used to like the silence - there's a unique quiet that comes in the middle of the night - and the lack of people, especially the lack of people.  The darkness has never really bothered me, and I love being able to see the stars even brighter.  The dogs are trained, after all these years, on my schedule and they don't seem to mind it either, especially in the summer when the blazing daytime temperatures are not very appealing.  Things are more peaceful at night.  Or, they used to be.

Now, nighttime is becoming a time when my doubts creep in, my dark thoughts come to attack, and my failures come to play on a loop.  Instead of being able to peacefully enjoy the quiet, the quiet seems to have turned on me.  Lately, there have been nights I just lay in my bed and my thoughts just drift to the me I could have been if I didn't get sick.  A few days ago, my mom ran into someone that works in the labor & delivery unit at my old hospital, someone I have never ever met, who told my mom that she knew who I was, what an excellent tech I was, that all the doctors loved me and missed me.  Four and a half years after leaving and a woman I don't even know can still say that about me.  It makes my heart ache, because I still have such a burning desire inside of me for the knowledge and the passion to do the work, but I physically can't.  I truly feel trapped inside my own body.

During the day, it seems so easy to put on the mask of make-up, nice clothes, and styled hair and say "oh, I'm fine"... even when you're not.  But at night, when you're alone, all of that falls away.  No, I'm not okay.  I feel lost.  I feel like all of my friends get to move on with their lives - move to new states, find new jobs, get engaged, be happy - while I am just stuck in the same position, day after day.  Sick, waiting for my next doctor's appointment, which usually brings more "I don't know"s and stagnant results.

I want to be able to have those dreams again, to sit down at night outside, looking up at the stars and dreaming of my future and to have those dreams actually be possibilities - not just laughable wishes.  I want to love the night again like I once did, to love the peace and quiet, to love the comfort of the darkness and the relaxation it brings.  I hope that someday soon I will be able to renew my love for the night.  Until then, I will be doing my best to remind myself of all the wonderful things the night can bring, and fighting against all the terrible things that are trying to creep in.

IC awareness month.

Although I have acquired many other related conditions and disorders throughout the last few years (or discovered ones I already had and didn't know about), Interstitial Cystitis is the one that started it all.  (By the way, I love when they are referred to as acquired conditions -- like someone walked up to you carrying a big ole' box with a red bow on top... "Congratulations!  You've been selected to acquire fibromyalgia! Woohoo!!")  To say that it is a complex condition is an understatement.  It doesn't present itself the same way in any given case, it doesn't respond to treatment the same way even day-to-day or person-to-person, and it is constantly changing and progressing.  Talk about trying to wrangle a beast. Since September has been IC Awareness Month (which is sadly coming to a close!) and because I have had a few friends ask me about what I personally do in my own life to combat my IC flares and deal with my IC on a daily basis, I thought I would write this blog post to share some of those things with you.

the lowest of the low.

I had a draft all ready to be posted this week about how to deal with things when you are feeling at your lowest, most frustrated point with your illnesses.. and then this past week happened.

I've talked on here before about how I get migraines.  Since I was in middle school, I have gotten what are referred to as basilar, or ocular, migraines -- instead of the "typical" migraine, I get ones where the entire (usually left) side of my body goes tingly and then numb, starting with my fingertips and progressing up my arm, through my face/mouth and down into my trunk and leg.  I also get an aura in that eye that starts as a blob but eventually leads to a complete loss of vision on that side.  I also have the "typical" migraines people get, with the auras and intense pain, and I get sinus headaches. 

This is what my aura looks like when I first start getting it, and then it turns completely black with no lines.

trip to ocean city.

A little over a month ago, my boyfriend and I decided to take a vacation to Ocean City, Maryland.  We had both been there before and enjoyed it, and it's a short drive from where we live in New York, so the trip isn't too hard on my body.  Our one dog, Zoe, spent the week at a local doggy daycare/boarding facility, but our other dog, Hendrix, isn't always very good with other dogs and had never been to the beach before, so we decided to bring him with us.

Despite cooler weather and a few days with bad bladder flares, we had a pretty nice time.  It's always more difficult traveling now that I am sick, but I just make sure to plan ahead to ensure a seamless trip.  There are a few tips I have learned along the way that make traveling and vacationing a lot easier on me and the whole crew and make for a much happier, less "flared up" trip, and I thought I would share those with you!

the beginning of our adventure.

nature box june 2014 review

i feel like i am always so behind on my reviews!  :(  i am trying to catch up and am almost current thankfully.  somehow it seems like there are just never enough hours in the day, or that i am too tired to even think about blogging.  i also think i am going to use my blog for more bloggy type things -- more of my personal feelings and pictures, instead of just box reviews and beauty stuff.  that was my intention in the beginning, but i still find it hard to be open and honest about things that i am embarrassed about (things to do with my illness), but i think it will be good for me.  what do you all think?

anyway, this review is of a new snack box i found -- nature box.  

health update - going to rochester

hey everyone.  on monday, i posted on my instagram that i was going up to the university of rochester hospital to see my new cardiologist about the hole in my heart.  i wanted to update you guys on how that went because i know some of you are wondering, and it's a lot to post on instagram, so i figured i would do a health update post!  by the way, i appreciate all of you who have wished me well on my way there or checked in after to see how i was, or asked how it went.  it means a lot to know that you guys care about me and have my back :)