beautiful blood

 a post from last September 2014

That feeling when you feel the warmth in your lungs, you taste the taste of blood. The feeling of it rushing quickly into your lungs filling them and your coughing trying to get it out. You start to see your life flash before your eyes, i think oh god, not like this. blood spewing out of my mouth every cough i cough its more blood, beautiful bright blood the blood that gives you life is going to be the same blood that kills me. I start to think of the things i didn't do the words i didn't say. I start to plea with god "i know we have never been good friends, i know i have said some shitty things about you but please god not like this, not right now" I stop take a deep breath and i feel it again...more blood. I start to panic knowing that this is possible to bleed to death in a parking lot of a half ass decent restaurant. I glance up see the faces of my mom and dad and matt and realize they are thinking the same thing. Make it stop.

I close my eyes and think of the happy things and think to myself i can't keep doing this...do i call and ambulance? Can we make it to a hospital? my hospital is 2 hours away...what if we don't make it in time?

I open my eyes and reason with myself...this isn't the end...breathe. After getting to the car it starts to slow. Such an awful feeling but relieved at the same time because i know its slowing and that means it might be over.
I try not to panic and ask to be token to a local ER. After sitting inside a room for over 3 hours they determine there isn't anything they can do, so i go home.
Even day and weeks after this passed I find myself dreaming this same nightmare and it feels so real. I awake and realize it was just reliving a bad moment...or was it real? I go to the bathroom and cough and spit...please please don't let it be blood I say to myself as my eyes are closed fearful of what I will find when I open them. The feeling of relief as I open so see nothing that looks like blood. But I'm awake and now worried. So Iay back in bed thinking about how it could of been different that night and how It could of went a completely different way if it didn't stop. I realize again how scary that night was and how lucky iam. As I'm drifting back into a light sleep it replays in my mind again and I go back to that same place, this time tho I don't wake up it happens all over again and I can't do anything but let it all play out in my head.
 

This happened for days and weeks after. I got little to no solid sleep and I found myself panicking at any chest pain or coughing that resembled that feeling of blood.

 It's been almost. Year since that evening and the nightmares are few and far between nowadays. I try not to let myself get to worked up but it still wakes me up in a cold sweat overtime i relive that night.

Im grateful its been a year since i have an episode like that but i also know it can come at any moment without notice.
  

so maybe the next time ill be a little more prepared but i honestly don't know how i could prepare myself for that experience.

 

The drug of the devil

Steroids are made by the devil, I'm pretty sure they have that somewhere on the print out that comes with the medicine. It is just a mean drug...it plays with your emotions like a yo-yo. One min your fine then the next your trying so hard not to punch someone in the throat for that smart ass remark. Steroids test your strength and your values; those screaming kids are just having fun but i swear i will punch the next one that lets out a blood curdling scream in the middle of target. But what steroids tests the most is the ones you love...its like putting them in a game show and with every response and action they either move forward to a reward like a hug or a step backwards towards the mean looks and eye rolls. You see I'm not a very violent person but these devil drugs make me feel like I'm capable of hurting small children and adults who are barley allowed to call them selves adults. I find myself angry and sweaty as every place we go seems tot have no air flowing which makes me moist and annoyed with the fact I'm uncomfortable and no one seems to care. We are only on day 5 and i know whats coming next...the tears, the ugly cry and the sadness. Its a vicious circle of these drugs...ill bite your head off for making a silly remark about my snack then cry cause it was mean for me to even say that...then i get sad cause I'm surprised i said such a mean thing to someone i love.
 so I'm asking for help,
 Dear God..please keep a watchful eye on all who encounter me within the next 10 days or so..please give them the power of forgiveness and the strength the overlook the rage i feel inside brought to me though the devil drug steroids. I pray they forgive me and realize that I'am at the mercy of a medicine who has a control on me and makes me far from who i usually am. Amen

*some examples are extreme and not necessarily anything i would do especially when it comes to violence towards others and is just a dramatic writing effect*

Peace, Love and Hello Kitty to all

Update

I haven't written in a long time almost a year. Things haven't changed to much in that year and I'm grateful for that. But at the same time things have been sliding slowly down hill. My lung function is at a low and seems to be staying there even after iv use. The shortness of breath is awful and find myself exhausted after every single task. My weight is an issue as it's the lowest it's been in probably 5 years. All of these are little things that build up to be a big issue escpecially with cf. I'm working on the feeding and nutrition, I'm finishing a round of IVs and soon will try a new path and visit a doctor who is more in tune with a natural way to help as I have found some of my lab work (especially vitamins) are a little out of whack, so what do I have to loose to go and see what they say. 

  Things other wise have been okay. Sometimes having to constantly fight to stay relatively healthy gets old and I find my depression at times grabbing me and pulling me down. Some days I can handle it and some days I just don't try to fight it. 

  I'm learning the more I try to plan to have. Good day the more likely it is my body or lungs will be a bitch and ruin what I have planned. Or it's the insomnia that has been a little booger lately. 

My brother just celebrated his 30th birthday and man is it crazy to think that he is that old, even though to me when I close my eyes I still see the big brother who was my idol and I would do anything just to get him to acknowledge me. 

My husband just celebrated his birthday too. We had an amazing lunch with his family and mine at our beautiful home and it was perfect. I just wish I felt more like me and was able to enjoy everyone instead of being a bump on the log. I hope he forgives me for that, like I said I can't control my good days. 

Matt is snoring in bed and as much as I love the sound of him sleeping it's just bittersweet not to be sleeping along with him. But I'll lay here in bed, with my two loves Matt and Rosie and knowing they are happy and healthy and their love  gives me a peace and joy that makes me feel complete even when I'm at my worse