Having a “feel sorry for myself day”

It gets very lonely in the hospital, and I mean very lonely. Sure, I have doctors, nurses, PT, RT, MT, and my physiatrist come visit me daily, but it’s not the same as family and friends coming to visit you. I sit here in my bed and I can see people walking by, and the people I see walking by are parents, friends, family members going to visit their family member that is here in the hospital. They are carrying balloons, gifts, cards, and even outside food in their arms. I sit here and I think to myself “Man, must be nice.” I get that I am 100 miles away from my home town, and I get that people work, and even have an issue with money and not being able to afford the gas, however if my friend and or family member was in the hospital, I would try my hardest to be there by their side. Hell, even a phone call would be nice, maybe a text… I hate hearing the same thing over and over again when I am in here. “Oh if you weren’t so far away. “We planed on coming to visit, but something came up.” My favorite is when I am not in the hospital and I get the occasional “If you ever need anything while you are in the hospital, let me/us know.” HA! Been there, done that. It doesn’t matter.  I don’t know, maybe it’s just me, maybe the family/friends can’t handle seeing me in this hospital? I mean, it’s not like I am dying..I’m not on my death bed..and I really hope they all don’t think it’s okay to show up when that time comes. I mean if you couldn’t be with me when I was at my best, then you don’t deserve to be at my bedside when I am at my worst. Sure the first few days that I am here are probably not the best days to come, but after 48 hours of antibiotics I am usually able to sit up and socialize. It just sucks being so far away from home. But, I’ve been dealing with this now for a few years, you’d think I’d be use to it, but no, I am not, because every time I get put back in here the realization of me being all by myself sets in. When you are alone, you have so many thoughts go through your mind, especially when you are worried about your health, having a friend by my side would be awesome. I guess what I am trying to say is this all sucks and I really hope that these so called friends never have to go through with something like this by themselves. Being the kind person I am and having a big heart like I do, I know if one of them called me up, I would be there for them even though they were never here for me. Just remember, if you do good things, good things happen in return! 

 

On to my CF. I looked at my lung X-Rays from when I came in, and I have to say I am sickened at what I saw. I had so much mucus in my lungs, and the pneumonia was ALL OVER! I compared those X-Rays from the 30th to the ones I had done yesterday and there as some improvement, not much, but some is better than none. The pneumonia looks a lot better. My doctor had me in tears again, however what she said really sank in. I am not sure if I am ready to blog about all that right now, but in time I will. Lets just say I have a lot of things to work on, and I need to stop beating myself up over having this deadly disease. No, it’s not easy, to be frank it is hard as mother fucking hell, and there are days that I do not want to get out of bed, days that I wish I could just give up, days where I wish I could have one day…just one day to where I feel no pain, where I don’t cough to the point I gag. However, God made me the way I am, and there is a reason for this, I may never know the reason, but I do know that I can do this…I HAVE to do this. I HAVE to survive, I can NOT let this disease define me any longer, I can NOT let this disease control me. It hurts people, it really hurts dealing with all of this, and knowing my outcome in life, sure we all are going to die some day, but knowing you have a disease that can take you away makes the realization much more clear. Do you understand what I am saying?? Not every day is rainbows and sunshine, and not every day is clouds and rain, but… I just don’t know, I don’t know anymore what to think or do..I am just stuck.. Stuck in a body that is damaged..No one likes a damaged person….

Until next time…

Kara

                                                        

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