6 days

And counting. It feels like I have been in this hospital for a month! Time drags ass big time. So the other day I lied down to take a nap, I was SO tired! I woke up around 4ish and I was FREEZING, shivering so bad, and I had a massive headache. Luckily my PCA walked by and I was able to chatter her name. She came in and took my temp, and it was 102! Just great, now what is causing the fever? They called the Resident that was on call, she comes in and say’s “Wow, you don’t look good.” My thought…No shit! She asked what was wrong and I told her, headache, fever, chills. She said “Okay, I’ll be back.”  About 1 hour later, she comes back with my nurse and they tell me they are going to draw some blood to see if maybe I have an infection in my PICC. They did that and finally gave me some Tylenol, which I thought with a fever that would have been the first thing they gave me, but what do I know?  6:00 P.M. rolls around and my RT comes in and wants me to do my vest (I’ll be posting a video of me doing that) but I refused because of the massive headache. So, I just laid in bed and slept. Woke up again and was still freezing, they took my temp again and it was at 101, it was weird because I was sweating.  I woke up the next morning and was feeling better, still had a headache though, so they finally gave me my migraine medicine. That helped!

Yesterday I had to do a video swallow study, what is that you ask? Click on the link and it will explain it better than I can. I had to drink some barium mixed with Strawberry flavoring (So yummy..NOT) and then I ate a cracker with some barium on it. What this was to show was if I had any acid reflux coming back up, and if when I swallow, was the food/drink going down the right way. according to the tech everything looked great, and that is good! My doctor wanted to do this to see if the acid reflux could be what is causing the pneumonia. I don’t understand it, I thought pneumonia was a virus…but what do I know?  Okay on to the video, I recorded this a day or so ago and was planning on posting it then, but the fever and all that happened. This is my first attempt at making a video, so forgive me. My voice will be shaky, and that is because that is what the vest does..it shakes us. Hope you enjoy, and I will have more to post again soon. Okay, so I had to upload my video to youtube, so you can go here to view it..http://www.youtube.com/watch?v=BhBkrWkw9Fw&feature=youtu.be

Kara.

Welcome to my world.

So, I decided to start a blog to keep track of my health, and all the ups and downs of this disease. My counselor and doctors think it’s a good idea for me to write down my feelings and all that good stuff.  Oh the joys of having health problems and depression, doctors always think they know what is best. I’ve been in the hospital now for 6 days, I have 10 more days to go in this place. I’m not handling it very well. I am really emotional, I’m jealous that my husband and son get to go out to eat, and to people’s house to visit. I’m pissed off at my doctor, I’m pissed off at myself. I pretty much hate the world right now. Let me give you a little background on her. I have to admit she is a really good doctor, however she comes off as showing tough love when it comes to me. I’ve made mistakes, I’ve lied to her about doing my treatments, and I regret it all, but I was the one who decided to be honest with her and my other doctors, and I told them I wasn’t doing what I should be, but do you think I get any kind of credit for that? Nope, nothing! I try my hardest to please this woman and it doesn’t seem to matter. I am so very tired of fighting with her, I am so tired of being so worried every time I come in to clinic for a regular visit, and when I am in the hospital, I dread every morning when she comes in. It shouldn’t be like that, but it is.

I am in here this time because I have pneumonia, and I have it all over. I was really sick, a fever of 103, body ached so bad, I couldn’t walk, I had to be pushed in a wheelchair, it.was.bad. I am doing better now, I still cough a lot, and it hurts some when I take a deep breath in, but I don’t have the fevers, and I actually feel somewhat human again, which is great, because the way I felt, I just wanted to die. I really hate this disease, it consumes me so much. There isn’t one day that goes by that I don’t have some kind of pain, that I don’t cough, that I don’t cry. It all is so overwhelming. Although all my friends say I am so strong, believe me, I do not feel strong at all. I am weak, I have many days where I want to say fuck it and give up. It’s so easy to just give up ya know? However, I am smarter than that and I know I can do this (or I think I can) I have a son who is depending on me, a very supportive husband who needs me too. Trying to stay positive is very challenging, when you think you are having a good day, you may get a phone call from your doctor telling you you have an infection, and you need to be on more antibiotics, or you wake up coughing up blood, and that really sets me off, because I have had numerous surgeries to repair the broken vessels in my lungs, plus I had a Lobectomy  in 2010, and that was suppose to stop the bleeding, and it did..for about a month. So very frustrating!! And my family and friends wonder why I am as crazy as I am! Geesh, walk a day in my shoes and you will find out why.

And then there is the fact that I know this disease is going to be what kills me. I mean c’mon, it’s obvious. My brother died from it, I have had 3 friends die from it, and the more I hear about my Fibros (men with CF) and Cysters (women with CF) fighting for their lives, it’s just a slap in the face. I think “My God, that is going to be me someday.” Sad, but true. There is no cure for CF (Cystic Fibrosis) however there is a pill out now that actually treats the disease, problem is…I can’t get it! That story is for another day. I hope you’ll enjoy my bog, and not get tired of the bitching, because there will always be bitching 😉 I’m going to try and blog once a week, we’ll see how it goes!

Until next time..

Kara