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.

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 :)

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.