Friday, August 14, 2015

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.

Saturday, July 4, 2015

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.

Saturday, June 13, 2015

i'm back!

It's been almost a year since I have posted an entry on this blog.  The initial reason for my sudden muteness was not a happy one -- I had my laptop on the table one day and the dog ran into the leg, knocking over a cereal bowl full of milk and spilling milk everywhere. :( Needless to say, it fried my motherboard and completely ruined my chances of ever saving my beloved MacBook.  Sigh.  It took me until Christmas to get the iPad that I use now, along with a separate Apple Keyboard.

Even then, it wasn't just the lack of actual laptop that prevented me from posting.  I had a phone, and my mom's computer was available to use if I really wanted to.  I just felt like I didn't really have anything of importance to say.  After all, who am I?  I'm just a random person who has been unluckily struck with a series of frustrating and terrible chronic illnesses, who basically sits around most of the day.  I don't feel like I contribute much to society, and I certainly didn't feel like I had much to contribute to the blogosphere.

But then I came across this pin on Pinterest:

As I read it, I realized that it was completely true, and I (as usual) was a giant idiot.  Even though I may not feel like I have a lot to contribute, I have me.  I have my story, my experiences, my life.  I have gone through some pretty awful things, but they have all served as learning experiences.  If I can take those things and use them to help other people, that would be awesome.  That is one of the reasons I went into healthcare -- to help people -- and since I can't physically work in that field right now, I can do the next best thing, which is help people this way.

So this is the long way of saying... I'm back!  (I know, I know, you're thrilled!)  Seeing that pin reminded me of how much I like connecting with people and helping them, and that's what I want to get back into.  I have been absent on Instagram as well, but I am going to change that so that I can start connecting with people again.. It makes me feel less isolated and small in my chronic illness bubble when I am putting myself out there on social media.  The content of this blog will be changing slightly -- although I do love box reviews and will still continue to do some of those, it will also be more about my daily life and the struggles I go through with my IC and other things.  It's so hard to try to talk to "normal" people about what we are going through that I want to create a place where people can come and read brutally honest experiences that they can personally relate to and not only gain knowledge from them, but also feel like they aren't so alone in this crazy world.  I hope that my blog ends up being that place!  

Please stick with me, and as usual, I would love to hear all of your comments as we move forward.  :)

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