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.

the great new york state fair.

Every year, there are a bunch of festivals and fairs in our area. I love going to them and seeing the different vendors, finding new treasures, and most importantly - the food! Fair food is always so delicious, probably because it's so bad for you! Unfortunately, we didn't get to as many fairs this year as I would have liked because of our vacation and not wanting to leave Trixie alone so soon after getting her.

One of the great fairs near us is the New York State Fair. It's a huge annual fair made up of 375 acres complete with a Restaurant Row, hundreds of vendors, animal barns with loads of farm animals, a separate kids section, a petting zoo, and a midway with rides. It attracts big name entertainment acts, as well. Two weekends ago, Chris & I decided to take a trip up to the fair, since Labor Day was the last day it would be there. I have been suffering from a delightful chest cold for the past few weeks, but on that Sunday, I finally felt well enough to go to the fair.

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.

pain demands to be felt.

I've been pretty late to jump on the "The Fault in Our Stars" bandwagon, given that the huge hype about it mostly crested earlier this year, when it came out in theaters.  I read the book when it first came out, so I was already familiar with it, and I have a strong aversion to the majority of movies that are based on books.  In my opinion, most movies do not adequately translate the feelings of a book onto the screen.  Sure, I'm a book snob -- that's no secret.  Anyone that knows me knows that I have, at any given time, at least twenty books in my room waiting to be read, that I have way more books that I have anything else in my life (including -- shockingly enough -- clothes), and that if you spill on or fold a page of one of my books, our relationship is pretty much over.  All of that being said, I think most readers, even the casual ones, would agree with me that books are not known for translating well onto screen.

when clothes aren't just clothes anymore.

Have you ever had one of those moments where clothes just bring you to tears?  Okay, okay, we've all had those times when we see something we love and then look at the price tag and - boom - we get a little misty-eyed, knowing we can never afford it.  But that's not the kind I'm talking about.  I'm talking about the moments that you see on Oprah, the dramatical kind where the music swells and it feels like everything is right with the world and unicorns should be frolicking about on cotton candy clouds.  Let me explain.

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 :)

fashion friday - maxi skirts

today's fashion friday is on a very versatile piece that gets a lot of use in my wardrobe: the maxi skirt!

like a lot of chronic illness sufferers, i have trouble controlling my body temperature.  i get very hot pretty quickly and it takes a lot to get me cooled down.  this makes summer dressing kind of tricky, since i like to dress nicely and not be mistaken for someone standing on a street corner, if you get my drift.  i draw the line at about a 2 to 2 1/2" inseam on my shorts, and while i mostly wear tank tops, i make sure they aren't overexposed in the front and cover me well in the back if i have to bend over.

while this is all well and good for modesty's sake, it's not always very helpful when i am extremely hot, my face is flushed, i'm feeling the oh-so-pleasant boob and middle-back sweat dripping down underneath said tank top, and there is no refuge in sight.  the last thing i want to be doing is having tight clothing against me, or jean shorts that rub against my legs and create friction that makes me feel even sweatier, especially when you have to use a bathroom that doesn't have air conditioning.  there is nothing that makes me feel more gross and sweaty on a hot day than using a hot bathroom and having to wiggle into, button, and zip up my jean shorts, and go waddling back out into the heat, all sweaty and uncomfortable.  bleechhh.

this is where the maxi skirt comes in!  while it seems like it's a lot more fabric to cover you and therefore counterintuitive, it couldn't be farther from the truth.  most maxi skirts are made from a breathable cotton or a lightweight chiffon material (my personal favorite) that allows it to move with you, and allows for plenty of delightful breezes to cool you down.  whenever i wear my maxi skirts, it almost feels like i don't even have any bottoms on, or like i'm wearing pajamas, because they are just that comfortable!  here are some style tips to remember about maxi skirts!

a weekend on the water.

this past weekend, i was finally feeling good after being cooped up in the house all week with the aftermath of my terrible eye test!  as you all have probably figured out by now, i love being outdoors, so having to spend the week inside with all the windows covered and my sunglasses on to block out any light was torture.  all i wanted to do was frolic in the beautiful sunshine, so that's exactly what i did all weekend long!  :)

a health update.

hey everyone.  i have really been struggling with my health for the past few weeks, which is why i haven't been posting very much and commenting on blogs, or been active much online at all.  unfortunately it has been mostly centered around my migraine headaches/problems that i have been having with my eyes, which tends to get worse with using electronics a lot!  a lot of times when i am sick, i just relax on the couch and watch movies or tv, or play games on my phone.  when i am having pain in my eyes (as a lot of you are familiar with), that's the last thing you want to do or even can do, because it makes it a lot worse.  so that's why i haven't been around much.

i have never had "typical" migraine headaches, where you just get bad pain and take some aspirin or whatever and they go away.  ever since i was a teenager, my version of a migraine was where my entire left side of my body went tingly and then numb (leg, arm, face, tongue, etc.), i couldn't see out of my left eye at all, couldn't speak properly, could not think of correct words, vomited excessively -- basically like a stroke.  nothing helped them except for large amounts of sleep, around 12-18 hours, and even after i woke up, i would be in a confused fog for a day or two with severe head and eye pain before i was back to normal.  i didn't know that these wasn't a regular migraine until i started surgical tech school and found out that a "normal" migraine was more of what i considered a regular headache.  at that point, i was only getting them about once every 1-2 years, so i didn't bother going to a doctor because they weren't regularly occurring.

starting about a year ago, i began getting them again.  at first, it was just one, but it was the old kind, where it was stroke-like with all the same symptoms.  i had another one a month later, and then again three weeks later.  i started seeing a neurologist who put me on topamax, but it hasn't been doing much good.  over the course of about six months, i have been increased to taking 75mg both at night and in the morning, and i have a prescription for imitrex to take when i feel a headache coming on, but the imitrex hasn't helped at all, no matter what combination i take it (one now, then another two hours later, two now, then one later, two now then two later, etc).

beginning in march, i started getting just visual auras without a headache.  these are frequently referred to as ocular migraines, and since i have these other migraines (basilar migraines), i am more prone to ocular migraines as well.  my neurologist figured that is what they were, and because i wasn't experiencing pain with them, that was my diagnosis.  at first, they were just pops of color/light and occasionally some flashing lights, with a shimmering cloud.  i had a brain MRI, which came back clean with no brain lesions (which is somewhat unusual for someone who has had the severity of migraines i have from a young age, but i'm not complaining!).

however, in the past 2-3 months, my visual symptoms have increased to a very bothersome level.  

fashion friday - hats

today's fashion friday is on an accessory that i enjoy all year round -- hats.  as i'm sure many of you also struggle with, there are lots of days when i just don't have the energy to take a shower or deal with my hair.  when you're healthy, you take for granted being able to hop in and out of the shower, brush your hair, or the twenty minutes it takes to style a cute updo!  so many days my limbs just will not cooperate (or feel like they weight 50 pounds -- each) and taking a shower seems like a gruesome task, one that will leave my joints screaming in pain for hours afterwards.  so instead, i just throw on a cute hat and out the door i go!

especially handy in winter weather when they do double duty to keep us warm, hats are equally trendy in the summer.  great for the beach as an extra layer of sun protection, they also look adorable with a sundress or maxi dress, can look dressy when paired with khaki shorts and a chiffon shirt for a nice dinner, and are a great pairing for an outdoor summer wedding.  they are also an easy outfit topper for just running errands or a quick lunch with friends, and a must have for any summer concert or night out on the town!  they're so versatile and easy to match with just about any outfit, whether it's colorful and vibrant, classy black with an edgy vibe, or preppy and nautical, there's a hat for every chronic illness fighter to be able to perk up your wardrobe, look great, and save yourself the pain and struggle that comes with getting ready.  i also included a few head wraps because they are a great alternative to hats in the super hot summer months when the temperatures are soaring but your hair is dirty and a hat just isn't appealing -- these great wraps will still cover the front of your hair without making a sweaty mess out of your whole head and will keep you cute while doing it.

now... check out these awesome finds!

fashion friday.

one of the things that i find most frustrating is finding clothes that are both comfortable and fashionable.  i love clothes -- just ask my boyfriend and our overflowing closet! -- and i used to love shopping for them.... until i got sick.  now shopping for them is hours upon hours of frustration.  nothing seems to fit right anymore, and because of the pain and bloating in my body, it's so hard to tell from day to day what size i am going to be, what body part is going to hurt and can't be pushed against that day, and i never know what size i should buy.  there are days that i can wear my skinny jeans in the morning, and by the evening my stomach is so distended from the inflammation in my bladder and belly that nothing else fits but drawstring sweatpants!  UGH!!  i know i am not the only one who has this problem (and who is so frustrated and upset by it), so i thought that i would start something new on my blog.

every friday, i am going to have fashion friday, where i showcase a type of clothing that i have found is especially friendly for those of us with chronic illnesses.  i have tried so many different styles of clothing over the years (with many hits and misses) that i want to be able to share the information with you all so that you don't have to waste the time that i did, too!  this way you can find the information right here, all compiled for you so you don't have to go searching on your own.  i will include many different price points and a variety of stores so that hopefully i cover all ends of the spectrum.  and hey, even if you don't have a chronic illness, i hope you enjoy the fashion finds as well!

for this first fashion friday, i am going to be covering a new trend for the spring and summer that i was very happy to see come back: shorts with elastic waistbands!  some stores are calling them "soft shorts" this year, but either way i am thrilled they are back! they are super comfy for us without looking like we are wearing sweatpants (which they kind of are, but who is gonna tell?! not me!).  combining them with a loose tank or tee, a sandal and a chunky necklace, and we can fly out the door looking great (even if we don't feel like it inside).  it's important to feel somewhat put together on the outside, even if we aren't feeling too great inside, because it boosts our spirits a bit and gives us just enough of an attitude change that we feel like we can face more than we could if we were in our sweats.  that's why i think it's important to try to put on "real" clothes when we leave the house, and that's where fashion friday comes in.  this way, we can wear regular clothes without stuffing ourselves into something that is uncomfortable and makes us feel worse.  so without further blabbing from me, checking out these awesome shorts.  :)

international CFS/ME & fibro awareness day

today, may 12th, is a very important day in our little (but growing!) chronic illness community.  it is international chronic fatigue syndrome/myalgic encephalomyelitis & fibromyalgia awareness day.  although i have not been officially diagnosed with chronic fatigue syndrome, i do have fibromyalgia, and there are so many similarities between the two that it is often very difficult to tell the difference.  either way, both illnesses are extremely debilitating and have a profound effect on my life and daily functioning.

a few bloggers came up with the idea for a "blog bomb", or a mass of postings by those of us in the blog world that have these illnesses, to share our stories today so that we can bring awareness to these illnesses and how they affect our lives.  so little is known about how these illnesses are contracted and how they truly affect the body, why they affect certain parts of the body and not others, and we are still so far from finding effective medications and other treatments that allow us to overcome the symptoms and live a more normal life.  not only that, but these illnesses are very misunderstood and there is such a stigma attached to them, that we are just lazy and don't want to work, or that if we just exercised and ate a little better, we would be fine -- both of which are not true!  hopefully, through this blog bomb, we can raise awareness and hopefully some progress can be made regarding stereotypes and what having these diseases is really like.

is it spring yet?

man, this was quite an up-and-down week!

it started out pretty nice with some nice sunshine-y weather.  i live in upstate new york, where we have basically two seasons: winter and summer.  we joke that our other seasons are almost winter, and still winter, but it's sadly true.  the beginning of this week started out nice, with weather into the 50's.  as i'm sure many of you can relate with, my fibro is directly affected by the weather.  this extra cold winter we have had has been especially hard on my joints this winter, and i have been suffering hard for it, so even a day of warmer weather was definitely welcome!  my mom lives in the country, so i took the dogs for a nice hike around the fields, with a lovely (and healthy!) grilled chicken and vegetables dinner.  hikes seem to be one of the few cardio exercises that i can do without many problems, and because of the sloping terrain, it isn't too hard on my joints.  i do make sure to take an epsom salt bath that night, and i usually have to wear a lidocaine patch to sleep that night, but it makes me feel so much better to get some fresh air, and the dogs really love it!  sometimes, the simple things going right in life make all the difference, right?

i got my brain MRI results this week, and thankfully they were clear.  but the medicine that i started to help prevent my migraines is really kicking my ass.  it takes four weeks to titrate up to the full dose, and this was week three of the titration, where i started taking two pills at night and one pill in the morning. the first week really knocked me out, the second week wasn't so bad, but this week was pretty bad again.  the day after i started taking the two at night, i was very dizzy and nauseous, and i felt like i was on the verge of a migraine the whole day.  those of you that suffer from migraines know the almost paralyzing fear that comes with it -- you are terrified that you are going to get a migraine at the worse possible time and place, especially if you are alone, and unfortunately, that anxiety only contributes to the stress that could cause one.

to top it off, i had to go get my car inspected that day and since it only takes about half an hour, i waited in the shop for it.  BAD IDEA!!  i forgot how the whole place smells like diesel fuel and new tires!  ugh.  i felt like i was going to pass out and by the time i left, my head was throbbing and i was sure i was going to get a migraine.  i took some ibuprofen and got a giant coffee from dunkin donuts and thankfully that was enough to head it off.  it is strange how different things are after you get sick, isn't it?  things that you don't give a second thought to before, like getting your car inspected, cause potentially day-altering problems when you're sick.

so anyway, going along with the bipolar new york weather, two days after it was almost 60 degrees and sunny, it SNOWED.  yes, snow.  of course, not just a dusting of snow or perhaps maybe an inch that would be gone in an hour or so.  nope, it snowed 7" here in about 6 1/2 hours on top of sleet, making for some crazy heavy, wet snow.  oh, lovely new york.

these two pictures were taken five hours apart.

as if that wasn't crazy enough, the next day it was 50 again and the snow was all melted by the late afternoon!  yikes.  my sinuses sure have taken a beating in the past few days.  i take an allergy pill every day and that is usually enough to quell any allergy/sinus problems i have, but when the weather jumps around like this, even they don't do much.  i had a headache the other night that nothing would touch, not ibuprofen, my cold face mask, hot washcloth, nasal spray, nothing.  my joints have been going pretty crazy too, especially my hips and knees, which are always my worst ones.  erf :(  

yesterday i was feeling good enough to be able to go run some errands by myself, which is the best feeling.  most of the time, i can't run errands by myself.  i need someone to go with me so that when i get tired (which is pretty quickly), i have someone to drive me, push the cart in the store, lean on when i'm walking, carry stuff, etc.  but yesterday when i woke up, i actually felt decent for once.  my hips didn't hurt too bad, and my energy level was pretty high, so i decided that i would try to go out and get as much done as i possibly could.  i was able to make it to the bookstore, craft store, victoria's secret, pet store, and ulta before i got tired and had to go home, but let me tell you: it felt great!!  the sun was shining, it was warm out, i was driving with my music on and my windows down, and it was wonderful to be self-sufficient for once and do things on my own.  it gives me hope that someday (hopefully soon) things will change and i will be able to be more self-sufficient and be more independent from my illness.  that is one of my biggest goals.

i also got to rock my new cultgaia headband from my fabfitfun box, which was awesome :)

tonight i start the last phase of my medicine titration, so i am hoping that it doesn't wreck me as bad as it did this past week.  the weather looks like it will be pretty steady for the next week or so, high 40s/low 50s, so let's all hope we are fiiiiinally away from winter and into spring for good!

how was your week?  do your illnesses get worse/better with the weather, too?  what are you most looking forward to about spring?