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.  

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?

ipsy march destination beauty bag review

after having to go to an appointment every single day this week, i was so happy to have absolutely nothing to do today!  these are the days that i am grateful i don't have a full-time job, because i have no idea how i would be able to go to one when i am this sick.  i have to set my alarm for 4 hours before any appointment, just to give myself enough time to hear my alarm (my meds make me sleep so deeply it usually goes off 5-6 times before i even hear it), wake up, do my stretches, get out of bed, take the dogs out, take a bath to get my muscles and joints loosened up, eat a healthy and substantial breakfast so i can take my morning pills, & get dressed/do my makeup before i leave.  it's usually quite an ordeal and takes me a bit of time, not to mention that depending on the type of doctors appointment, my body kind of freaks out afterward and sends me into a flare.

yesterday, i had the brain MRI for my migraines.  i had it with and without contrast, although i didn't know i would be having it with contrast.  since getting since, my body is extremely sensitive to anything at all foreign and rejects anything non-native, and takes a super long time to heal.  i got a small amount of the contrast, just enough for the 8-minute scan, but afterwards, my body freaked out!  my face was flushed, i was hot and sweaty, my neck lymph nodes were swollen, i was super super nauseous, i had diarrhea for about 12 hours right after the test and through the night, my nose was stuffy, i had a headache in the back of my head, my visual auras were really bad, i was very dizzy and disoriented.  i just laid in my bed staring at the ceiling for about 2 hours because i just could not focus on my book, and i kept forgetting where i was, and feeling like i was outside of my body.  it was very scary and strange!

luckily, today i feel a lot better, but i am just very tired.  those with chronic illness understand that the word "tired" doesn't even usually feel accurate for how we feel.  it is more of an exhaustion that is so deep in your bones that sleep doesn't even make it feel better.  the kind of tired where you can sleep 12 hours, and you wake up and all you can think about is when you can go back to sleep.  that's how i feel today, and why i am thankful that i don't have to go to a job and can just lay around and rest.

on a much brighter note, i have something exciting to share!  i subscribe to the ipsy beauty bag, and i got my march bag yesterday to share with you all!

what is ipsy? for those of you that aren't subscribed, ipsy is a beauty subscription.  for $10 per month, you receive a glam bag full of full-size and and deluxe sized beauty products, specifically tailored for you through a beauty quiz you take when you sign up! you can watch videos on the website to learn how to use your products, and each month you get discounts on the brands that are included in your bag, along with additional special discounts.  you can also review the products you receive each month to receive points to use towards future purchases!

interested in becoming a member?  check it out HERE!

this month's bag was themed destination beauty.  let's check it out!

 first up was the beautiful bag!  each month all of your beauty products come inside a reusable makeup bag, which i think is wonderful.  the bags are always really cute and i find many uses for them, not just makeup.  i put pencils in them, lipglosses inside my purse, sometimes i use them for a clutch, a nailpolish holder  -- the possibilities are endless!  it says that this month, the bag is an exclusive print from artist klari reis' geography-based series, "street anatomy," which showcases san francisco, california.  the bag is a nice study vinyl, which is easy to clean for those accidental make-up spills, and a fun and bright pattern for spring.

the first product was this body butter from the brand pacifica.  this is a pretty decent sized deluxe sample at 2.5 oz.  the packaging is really cute, and the flip top is really easy to open.  i find that sometimes they are quite hard to get open with your thumb, but this one was easy.  it also smells AMAZING.  yummm.  definitely strong on the coconut, so if that's not your thing, you wouldn't be a fan of this body butter, but i definitely enjoy it.  i think it's a clean but luxurious scent.  it has a very silky texture and it sinks into your sink easily & quickly without leaving much residue behind.

next up is this marvelous moxie lipgloss in the shade "rebel" from bareminerals.  i have always wanted to try something from this brand but have just never gotten around to it.  i have to say, this is the perfect product to start with!  i love lipglosses, but i am also very picky about them.  however, this lipgloss is perfect!  it is a great shade, very neutral but with just a hint of color.  it's not sticky, either (one of my biggest lip product pet peeves) and it smells exactly like mint chocolate chip ice cream!  how can you get any better than that?!

ipsy also included this coupon attached to the lipgloss, which is a great perk, in addition to the discounts they offer online for the products in the bag this month.

this is a swatch of the lipgloss in the shade "rebel".  as you can see, it's a fairly neutral tone but with a pinky/coral lean.  this is one swipe, so you can see that it is pretty pigmented and very shiny!

the next product in this month's bag was a nail polish from nicole by OPI.  this is a full-size (woohoo!) nail polish from their new roughles line, which is their new set of textured polishes.  it is my favorite when i get a full sized polish in my bags!!  but.. i do have mixed feelings about this one.  i LOVE the color -- it is a beautiful robin's egg blue that is definitely perfect for spring.  but i really don't love the whole textured nail polish trend.  i've tried a few here and there and they just bug me.  i don't know, i just don't like the texture and the feeling.  but, i still gave it a shot...

unfortunately, my camera died right when i was taking the nail pictures so this is the only one i got, hence why it is slightly blurry.  but i have to say, this might be the textured polish to change my mind!  you can sort of see in the picture, it has pink flecks in it, plus tiny royal blue flecks and some tiny goldish/brown ones.  once on my nail, it looks really really pretty.  it reminds me of those malted candy speckled eggs at easter time.  it really is gorgeous, the application was very easy and the dry time was super quick.  the picture is two thin coats, and it was opaque.  well played, OPI!

the last product in my bag this month is this stunning eye shadow quad from the brand be a bombshell.  the name of the quad is "bora bora" and this is a full-size product.  this quad is beautiful!  i was pleasantly surprised when i opened the box it came in.  i have never heard of this brand before, but these colors are very pigmented and strong in real life, very jewel-toned.  i mostly wear brown and gold shadows, so this is perfect for me.  i love the turquoise accent color, because it will be a great pop of color for summer!

these are the swatches of the colors in the quad, clockwise from the top left.  each swatch is one single swipe -- they are super pigmented!!  the blue is the only one that was slightly less pigmented than the rest, which you can tell in the photo.  they are definitely shimmery shades but it's not overwhelming.  the color feels really silky and easy to work with, too.  i can't wait to try these out!

overall, i thought this was another excellent ipsy bag!  i have been subscribing for about 7 months now and have yet to get a bag that i didn't love.  plus, i think $10 is a total bargain -- the nail polish alone is $8!  what a steal.  i definitely recommend that you check it out, you won't regret it!

stay tuned this week for more beauty boxes, and hopefully i will be getting the results of my MRI tests. i was also thinking of doing a post on the foods i normally eat that i have found help my body out the most in reducing inflammation and keeping me feeling good.  let me know if there is anything you would like to read.  until next time! xoxo.

all about me.

i thought it would be a good idea to make a list of the illnesses i have and a brief description of what they are and the symptoms i have from them, as a reference point for anyone reading the blog (and also for my own progress notes).  if you have any questions, feel free to ask.  remember, not everyone has the same symptoms even if they have the same disease/illness, because our bodies are all different!

• interstitial cystitis -- i was diagnosed with this in april of 2012, and this is what started everything off.  i almost always feel like i have to go to the bathroom, even when i don't.  "normal" bladders can hold about 700 cc's of fluid before they absolutely have to go, mine can hold about 250-300 cc's before it's bursting in pain, due to scar tissue restricting its ability to expand properly.  i go to the bathroom about every 45 minutes, and when i am having a bad day, i go about every 15 minutes.  sometimes i pee chunks of blood, and sometimes it burns when i pee, like there is fire coming out.  this is the main thing i have to take into consideration when going out and the main thing that keeps me housebound, along with my fibro, because of the frequency with which i have to go to the bathroom.  i have to make sure that wherever i go has a bathroom that is pretty much always immediately available for me to use.  this makes it difficult to take car rides as well, because the bumpy roads are extremely painful to ride on with a full-feeling bladder.  although it might seem obvious to just drink less liquid in order to not go to the bathroom as much, unfortunately if i drink less liquid, it hurts more when i do pee (it burns), so i have to drink a ton of water to dilute my urine, thus resulting in me urinating frequently.

• ovarian cysts -- shortly before i was diagnosed with my IC, i had an ovarian cyst rupture on my left ovary.  at the time, i didn't think it was a big deal, but looking back, it may be what caused my IC to flare enough that i had to go out of work and on medication.  when it burst, it was so painful that i couldn't stand on my left leg at all, and when i sat down, i had to lean to the right so there wasn't any weight on the left side.  i ended up in the ER to get strong painkillers and even then, it was almost 3 weeks before it was fully healed, even though a normal one takes about a week or less to heal.  i continue to have many of them on each ovary all the time, not just during my period which is typical, and have also had two abnormal pap smears in a row, resulting in a colposcopy.  my gynecologist wants to do a laparoscopy because she suspects i have endometriosis due to my regular, abnormal bleeding, but i am waiting until my other medical issues are more under control before i have the procedure.

• ocular migraines -- these are different from regular migraines in that they are more similar to a stroke than a typical headache.  the first symptoms i get are a shimmering in my left eye, or splotches in the direct center of my vision.  it quickly progresses to a sharp, intense stabbing pain in the left side of my face, followed by the entire left side of my body (leg, torso, arm, tongue, face, mouth) going tingly and then numb.  no medication or any remedy helps it go away or make it better; i usually take ibuprofen around the clock (4 pills every 4 hours) just to make me sleep through it until it is over -- usually 12-16 hours later. for the 24 hours following my migraine, i feel on the verge of one constantly, my eye and head feel weird (no real way to describe it), and i have trouble focusing and just feel very out of it. i get about one of these per month.  lately i have also been experiencing strange visual auras without headache, including multi-colored bursts of light in my vision, waking up to see spots covering my vision, patterns look like they're moving, spots of zigzag lines in my vision, clouds of flashing lights, etc. my neurologist thinks that i have some brain lesions because they don't really follow any pattern and have come on suddenly, so i have to go for an MRI in a few days to get it checked out.

• TMJ -- when i was a senior in high school, i got in a head-on car accident where i totaled the car.  it was a pretty bad accident -- roof collapsed, airbags went off, frame was bent, entire passenger side crushed in, etc. and i am lucky that i escaped with what i did: a torn MCL on my left knee, and TMJ from the airbag hitting my face.  i have the snapping and clicking of a typical TMJ case, and a lot of pain.  i wear a mouthpiece at night that prevents my teeth from coming together and gives my jaw relief, and sometimes i wear it during the day if i'm having a lot of pain.  i notice it especially if i am in a very social situation that i have to do a lot of talking in, or if i laugh a lot on a particular day, because it stresses the muscles.

• fibromyalgia -- ohh, fibro. such a lovely invisible disease... NOT! fibro is truly awful because there is no real explanation for why you have it or what parts are affected, and no real tried-and-true method to get relief from it.  it sucks.  besides my peeing problems, fibro affects me the most, i would say.  before i got sick, i was very active, always on the go, going out about every other night or so, very social.  now, i can be out for about 4 hours, 5 hours max at any given time before i am just... done.  exhausted, and in a ton of pain.  and obviously, i can't do some of the activities i used to do, because they are just too much on my joints (and my heart, but more about that in a second). ironically, daily exercise is what is recommended most to relieve the symptoms of fibro, but (at least in my case), daily exercise is sometimes the #1 hardest thing to try to do.  there are many "trigger points" in the body that one has fibromyalgia pain/discomfort in, and not everybody has the same ones.  some people experience mild pain, while others can experience a stabbing pain simply from someone running their hand over the area. in my case, i have mild/fleeting pain in my fingers, wrists, elbows, and ankles.  i have moderate pain in my toes, shoulders, and neck.  i have severe pain (the kind where just running your hand over it hurts) in my lower back, hips, and knees.  so pretty much any activity i do, at least one of my "severe" category joints is affected, since they are my core moving joints.  getting out of bed in the morning is quite interesting.. it takes me about an hour between the time i wake up and the time i can actually get out of bed, because of the stretches i have to do and just moving my body enough to get my muscles limber to be able to sit up and get out of bed without squealing in pain and being super stiff. if i don't get my time to do my stretches, it's not a pretty sight.

• inappropriate sinus tachycardia --  i found out i had this last summer.  it's a hard condition where there is an abnormality in the way your adrenaline is released, and too much is released at one time, sending your heart rate up to really high rates for no good reason.  there were times i would just be sitting on the couch watching tv and my heart rate would be 140-150 (a normal person's heart rate is between 60-100).  i was attempting to do a few simple yoga poses with a yoga ball, and my heart rate shot up to 220, so it is very dangerous and makes it hard to do much cardio activity. because there is anatomically nothing wrong with my node that releases the adrenaline, the only way it can really be controlled is through beta blockers. there is an option of having is ablated (where they send a balloon up through your thigh to burn part of your heart), but a high percentage of people end up having too much burned away and immediately have to have a pacemaker implanted, so there is a high risk.  the beta blocker is helping somewhat.. i am on the maximum dose per day, and my resting heart rate is still about 100-110.  so, it's lower, but not very good, still. 

• atrial septal defect -- i actually didn't find this out until about two weeks ago.  when my OB/GYN wanted me to have my laparoscopy, i needed cardiac clearance because of my IST.  when i got my echocardiogram, they found out i have an atrial septal defect, or a hole in the heart.  it is a congenital heart defect, meaning i have had it since i've been born.  it is a hole between the two upper chambers of my heart, which essentially messes with how oxygenated and unoxygenated blood are delivered to the lungs and body, and they are mixed (that's a really simple version of it!). it explains a LOOOTT of things that happened when i was younger, and why i have been feeling so short of breath lately and having such chest pain.  they thought it was just the IST, but it is obviously because of the hole.  i have been feeling like i can't catch my breath, having pain and heaviness in my chest, get very tired very easily, plus my heart rate goes up super fast with the IST, so i've kind of been a mess lately.  i am just waiting for the insurance to approve it, and then i can have a transesophageal echocardiogram -- they put you under anesthesia and insert a scope through your esophagus in order to view your heart and it's flow and function better.  this will be able to tell the doctors how big my hole is and if i can get it fixed through catheterization, or if i will need open heart surgery.

• IBS -- probably the most common of my problems, IBS is also known as irritable bowel syndrome.  basically, i have diarrhea all the time, i am almost always bloated, and i get really bad pains in my stomach that i like to call death pains because they immediately make me drench with sweat and i can't focus on anything else or even breathe, they hurt so bad.  they are followed by an explosion on the toilet, which is so great.  woohoo!

so there you have it.  that's all of my illnesses in a nutshell.  i don't say all of this for your pity, by the way.  lots of you have it worse than me, i am sure of that.  i just want people to see that those of us who don't "look sick" are fighting battles that are just as bad as those of us who do, and judging us for our appearance isn't fair.  i also know that some of you can sympathize with the symptoms i list, and i want you to know that you're not alone! other people go through what you go through, too -- me! and maybe you know of things that i haven't tried that can help me, and maybe i know of things that don't work for me but might work for you and we can help each other out. isn't that what life is all about?! :)

my upcoming posts include foods that i have found help my body, reviews of this month's ipsy bag, and a look into things i'm loving this month! stay tuned!