Time To Move On

I have spent too much time focusing on my illnesses and how they bring me down and how i feel like they are ruining my life. I need to step back from all this and start over. No more letting my illnesses control me. Except, its easier said then done.

I have been sick for almost two years and at first i had lots of friends and family that supported me and tried to help me. But as time went by, they stopped calling and checking in. And finally, it was just me and my thoughts to bring me down. Too much time to think and let my illness take over. Soon, i became "the sick girl" whenever anyone asked me who i was. They all seemed so shocked that i would describe myself that way. But I've thought of myself as the "sick girl" for a very long time.

I sit at home on the couch and watch movies and read a ton. I rarely leave my house because i rarely feel good. And when i do feel good for once, it doesn't last long enough for me too do much. But that's no excuse. Tonight is the night everything changes and i move past being the "sick girl". Tonight i stop letting my illness control me and get a grip on reality.

Music

For me music makes everything better. It's a way of life for me. Every day of my life can be depicted as a song from somewhere. When I'm having a bad day, i listen to skillet. When I'm having a great day i listen to nickelback.

Music lets me escape the world for a while and into wherever i want to be. 



Music saved my life.

Interstitial Cystitis

For those of you who know me, I was diagnosed with ic about a year and a half ago. I still only know a fraction of what it is exactly, but I'm still learning. You are in pain almost 24/7 but you have to suck it up and deal with it. Because people get so tired of hearing about how you're always in pain, that you don't feel good. So your basic response when someone asks how you are becomes, "I'm fine," or "I'm okay."

Most people when I first got diagnosed were all like, "you're just doing this for attention," or "it's all in your head." When actually its not. Most people believe that unless you can see whats wrong, then it's all in your head. Us who have ic look fine on the outside, but on the inside, we're struggling. But we put a smile on our faces and do the best we can with what we've got.
Doctors know very little about ic but they are trying to do the best they can.

Basically I've heard ic being described as "all your nerves and insides are dipped in gas and set on fire." That pretty much describes what all us ic'ers go through 24/7. We may look fine on the outside, but inside, we're a mess. Our insides are on fire and messed up and cause us to become inflamed. Some days we may feel pretty good, so we try to do stuff around the house, but we end up pushing ourselves and we once again become inflamed. For me, inflammation means my pants no longer fit, I have trouble doing even the simplest tasks like cleaning the bathroom or washing dishes because my feet become swollen or hurting.

Ic can also cause more problems to develop alongside ic. There is no cure, its a life sentence of pain and finding new ways to deal with it. And if you don't have health insurance like many people with ic that I know, the doctor visits and the medication to try and help with the pain can become nearly unbearable, but we do what we have to to try and be as comfortable as we can.

I know many nights I lay awake and just stare at the ceiling because I can't get comfortable or I'm in so much pain that I can't sleep. It's just kind of a long never ending cycle. I feel great so I try to do something like clean the bathroom and I end up overdoing it and having a flare. Sometimes they last hours, but I've had flares that last weeks, where I am just laying on the couch and trying to make the pain go away.

I want you all to think for a second. Think of all your favorite foods. Pizza, pasta, chocolate, anything with even a hint of tomatoes. Now think how you'd feel if you could never eat that stuff again. Tragic right? That's what its like for me. All my favorite foods I can no longer eat. Pizza, frozen dinners, anything with any tomatoes at all, rarely any fast food. Basic home cooked meals cooked just the right way so that I don't become more inflamed. Occasionally I'll eat chocolate or chips and salsa and instantly regret it because I wake up the next day hurting so badly that it hurts to get out of bed.

When I first got diagnosed, I figured okay, its like having a utI 24/7 I can find a way to deal with it. Nope. Not like that at all. You have trouble sitting or standing for long periods of time, you get dizzy, your body seems malnourished from missing out on some of the foods your body needs.

I have met many amazing people through support groups who have helped me understand. But I have made two great friends who are also going through this and we support each other. We are far apart in place and age, but none of that matters. We are there for each other to help each other when we can with what we can. I just wanted to say thanks to everyone who's been there for me through all this. And those who left, you've only made me stronger.

And if you read this and think this is all to get a pity party, you're so wrong. This is to get awareness of ic out there and help people understand. You don't have to have something on the outside to make you have pain. Most people with ic don't have any physical signs outside of their body.

We strive to do the best we can with the limited knowledge of ic that there is. Medications, treatments, they're all on a trial basis, just hoping that some day they will work and help you. I myself am still struggling to understand ic, with all the different types of medication and the amount of pain I deal with daily, but I have some amazing friends who help me understand and are there for me

lets get the message out there and make people aware!!!

Silence

The silence drones on
getting louder and louder
cover your ears
turn down the silence
turn up the noise
anything to drown out
the blasting static of silence.

The yelling, screaming, hurting
is better than endless silence

I'd rather be hurting inside
then not feeling anything
noise reminds me that i
still can feel emotions
silence reminds me that I'm alone.

Silence is the enemy,
music is my friend
the music i listen to
the music i sing out loud
are the feelings i never
knew how to say until
someone else put them into words.

Turn up the music
get lost in the words
push out the silence
pull in the feelings
i buried deep in
the corners of my heart
goodbye silence, hello emotion

A Girl

I’m a girl with a fragile heart
bandaged together with care
cracks spread everywhere
in danger of shattering
treat it with care-
i only have one.

I’m a girl with trust issues
break my trust once
it’s so hard to get back
but there is hope
if you want it bad enough
you will work to earn it back.

I’m a girl who uses writing to express herself
I'm not so good with words spoken out loud
pencil and paper are my voice
my words can be few
and full of meaning
or lots of words with little meaning

I'm a girl who hates being put on the spot
when asked a question randomly
i freeze up, forget to breathe
my face burns red, my body gets warm
i stutter, trip over my words
before they turn to someone else.

I’m a girl who is protective
of her family and friends
hurt them, i come after you
hurt me, they come after you
we protect each other
you’ve been warned.

I’m a girl who smiles a lot
finds happiness in most things
even the unpleasant ones
life is full of sunshine
but also filled with rain
the way you see it is up to you

Fears

"You can't stop being afraid just by pretending what scares you isn't there" -Michael Marshall.

This quote strikes close to home with me. For years I ran from my problems. Or, tried to. I thought if I stopped thinking about it or talking about it, that they would go away or that I could convince myself that I imagined it.

I have severe anxiety and a lot of things made me have panic attacks. Even the little things like I forgot to do something or that I think I forgot to lock up the house when I left. I can't stop thinking about it until I get home and check. It makes me a nervous wreck.

I have a lot of things that I am afraid of. Some justified and some that are just ridiculous. My biggest thing lately with all the stress and me being sick is that I am so scared to sleep without my husband at least being in the house with me. So when he goes to work I get so scared of someone breaking in or getting hurt that I stay up all day till he gets home then crash in bed because since I've gotten sick I've been super exhausted.

I've been "sick" for almost two years. I got diagnosed with my one problem right after I got married and then slowly I keep getting more sick and with more illnesses. And the hardest part isn't the doctors, or the tests, or medications. It's the fact that I rarely leave the house unless I go shopping for food or whatever else I have to do. So with that comes losing the ability to be social. Okay, not losing the ability, just... Out of practice.

I rarely leave my house other than mostly doctor appointments. And I don't have any friends that come visit very often. So when I do go out with my friends or try and make new ones it's very hard for me. I don't know how to have a normal conversation that doesn't sound like I'm complaining or making it all about me.

It's hard to admit but, I seem to just complain lately to anyone who will listen about how much my life sucks in my eyes. When in reality, my life is the best it can be. I just need to let go of the past and focus on getting better and coping with what I struggle with.

And learning to face my fears no matter how ridiculous they may be. Once I do that, maybe I can start moving forward and keep moving forward instead of one step forward and three steps back.

I just need to believe in myself.

What People With Chronic Illness DO Want To Hear

I thought i would share this amazing article with you all. I suffer from chronic pain and other illnesses. And this article is straight on. And worded perfectly. Enjoy!

http://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear