I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Thursday, January 10, 2013

Videos, updates, and pictures galore!

My last video was from December 31st. Since then, a lot has happened. I'm not even sure that I'll remember all of it right now, but I'm going to try :).
There have been a lot of people that have asked how I was doing and what has happened since I haven't made a post after my the December 28th vlog when things weren't looking too good. I apologize to all of the people that were worried and that I left out of the dark. Just know that my health hasn't been in the best condition recently and I needed time to get back on track. As of right now, I am not currently back to baseline, but I'm really hoping that I'm able to get there soon. 
Soooo....the long awaited update shall begin...
While I was in the ER, I was told that I had Pneumonia by a resident and I state that in the video. Well, after the video was taken, the on-call doctor had came in to confirm that I definitely did not have Pneumonia..the resident just didn't take into consideration that I have CF...awesome. I tested negative for any infections or bugs...there was no Influenza A or Upper Respiratory Infection or any of that. 
The first three days of my recent admission were fairly rough. I was on continuous four liters with sats running around 93%. I was coming in and out of sleep for the full 72 hours. My body definitely needed it. I had tried eating numerous times, but I just didn't have the energy to even care about eating for the time being. I received Morphine to help with my intense lung/chest pain. On the fourth day I was sent down for a 6-minute walk test, along with PFT's. My sats dropped below 86% without oxygen during the walk test so we had to stop. With the oxygen, my sats stayed at 90%. My Pulmonary Function Test's showed that my lungs are currently functioning at 23%, and while this was not that entirely surprising, it was still a disappointment to hear. If you remember, I had just left the hospital on December 13th with 41% PFTs. That was all on Wednesday. 
The doctor had came in Thursday morning and told me that I'd be going home on 24/7 oxygen and home IV antibiotics. I was more than ready to get out of that place. It was depressing me more than it ever has. My roommate kept having seizures and certain episodes that I'm not going to go into full detail about. I had taken a couple laps around the ward and he was also walking around. Right before I went back into my room, I looked back at him and said, "Good job on walking. Keep up the good word," and flashed my best smile for encouragement. He smiled real big and replied with a "Thank you. You too." 10 minutes later I hear, "help! I need a nurse!" and seconds later he's getting wheeled by my room while having a seizure. Shit. While I'm sitting here feeling sorry for myself for how crappy I am feeling, I am witnessing someone else who is suffering more than I am. I can't even tell you how many seizures he had in the 5 days that I was there. I had broke down crying just listening to the doctors trying to communicate with him...I needed to get out of there. 
So, Thursday was the planned discharged day. I had everything packed, my mom and brother showed up, not to mention with the newborn baby, we were all prepared and then BAM! The discharge coordinator comes in and tells me that I more than likely will not be going home today because my insurance switched on the first of January and it was causing a bunch of problems. Apparently we had to wait for my insurance to give the go ahead with me going home on IV antibiotics and 24/7 oxygen to make sure that they'd cover it. They told the discharge coordinator that I am not their top priority and if we keep calling, they will just wait longer. Unfreakingbelievable. So my mom, baby sister, and my brother had to go back home. The next day rolls around and I'm sooo anxious to hear back so just sitting around was driving me crazy. I went on another walk around the ward and not long after I got back, I get a call saying that everything was finally set and I could go home. Hallelujah! I notify my mom, we redo the whole shebang, discharge papers are taken care of...I'm heading home. I'm heading home, and to be honest, I was scared as heck. I had never gone home with PFT's that low and I have never needed oxygen at home 24/7. My mom said on the way home, "Your health has declined so much over the past year. I just can't believe it." It was painful to see the hurt on her face after I had finally climbed into the car and exerted 10 minutes into catching my breath, once again. I wasn't going to ride in a damn wheelchair to the car. If I can walk, I'm going to walk. 
Once arriving at home, I was more than ready to climb into my moms bed with Norah (baby sister) and everyone else. My siblings were all such an amazing help and I'm so grateful for them. My brothers had no problem with changing my oxygen tanks when I ran out. My sister ran up and down the stairs probably 100 times just to do simple things for me like grab my charger, take my bags upstairs, and bring my favorite blanket down. Neither of them ever complained and kept asking if I needed help with anything. I became really emotional and started crying because of how grateful I was. 
About 4 hours after arriving at home, Coram, the company that delivers my home IV supplies, showed up. It was completely frustrating because I was sent home on two antibiotics that I had never been on. Usually, I just had a huge syringe with one of the medications that I pushed through and the other one was just a small bottle that deflated. I had to actually use an IV pole and hang both of my new medications. I knew that I would be able to figure it out, but I was completely exhausted, my mom was stressing out, and I just wanted to take a hot bath and then sleep in MY bed. After going over the instructions about 5 times (thanks to anxiety), I finally had enough patience to try it...and of course all was well. No biggy at all. I've seen the nurses do it a thousand times and I probably could have done it without reading the instructions, but my nerves and anxiety just kicked in and got the best of me. 
The second day I was home my mom came up with the brilliant idea that I just hook up a bunch of extension tubing into my oxygen concentrator in my room and have the tubes running around the house instead of dragging a tank with me everywhere. There was literally about 60 foot of tubing just hanging over the stairs and leading a trail to where ever I was. 
After a couple of days, I started developing an adverse reaction to Colistin, one of the IV antibiotics. As soon as it would start running, it felt like my airways were closing and I had this burning sensation that I had never experienced before...the pain and feeling of not being able to catch any air was so bad that I was literally punching my chest to try and make it stop...as if that's going to help. It felt like I was breathing in a huge breath of cold air mixed in with the burning from a dry, constant cough that has lasted for 3 weeks and then add a splash of fire to it...sounds pleasant doesn't it? Along with that, my vision stopped working, my face, arms, and hands became completely numb, and I had severe nausea. I got ahold of the on-call pulmonary fellow and was told to stop taking it and to just continue my Imipenem and oral Bactrum. Instead of a 5am, 6am, 11am, 2pm, 5pm, 10pm, 11pm IV schedule, I am now only doing a 5am, 11am, 5 pm, 11pm schedule..the less stress, the better. 
I guess I was really meant to be hit with a bad luck stick this past month because it doesn't stop there...
Since I'm doing home IV's, I have to go to the hospital and get levels done once a week...shouldn't be a big deal, right? All I need to do for levels is go and get my blood drawn and have them send it over to my doctor. I usually go to my nearest hospital for this because there's no point for me to drive an hour and a half away just to get some levels done. Well, the hospital closest to me has caused me nothing but problems. I go to get my blood drawn and since I have my port accessed, they could just draw blood from my port. Apparently my port wanted to be stubborn and decided not to draw back so easily. The RN was sitting there for 20 minutes just trying and trying to get the amount of blood that she needed...not such a good idea. You are not supposed to leave blood in your line or else it has the risk of being clotted. The RN even said, "I just really hope that I don't clot this.." About 25 minutes later, she tries flushing my port so she can restart and of course, it's not flushing. Three people tried..why oh why. I had even told them that I am fine with being poked if necessary, just please don't clot my line. They kept insisting that it should be fine and that they don't want to poke if they don't need to...sighh. Because of this, I had to get admitted through the ER...I HATE the ER because it's filled with nothing but germs. I was stressing out because it was 1:50 and I had a counseling appointment at 2:00 that I really didn't want to cancel since this would have been the sixth time in a row due to health issues every time. I was then taken back to a room and a few minutes later was notified that I'd need my port to be deaccessed and reaccessed again. I'm already difficult to access because of where my port is placed, so I absolutely did NOT want these people doing it. I told them that the only way that I'd allow it was if they sent someone who was absolutely positive that they could get it on the first try. Luckily, they sent someone from the infusion clinic and everything went perfect. It only took one poke and my port began to flush and draw back beautifully. I had to obviously cancel my appointment, but ended up stopping by to make sure that they got my message because my phone kept cutting in and out of service. Turns out that something came up and she was able to fit me in for an hour.
Sooooooooooooo....I think that about covers a majority of everything. I know I'm more than likely missing things here and there, but I can always write them on another post. 
Aside from an update on my health, incase you haven't seen my video on my latest post, my baby sister was born on December 26. We went into the hospital on Christmas day because my mom had been leaking and we were going to see if they would stop it since she was a month early. On the way to the hospital, my moms water broke. Unfortunately, I was not doing too well during all of this. I had a migraine that lasted 2 1/2 days and the whole time, my vision was messed up from the migraine. My mom wanted me in the room during delivery so I could take pictures. Believe it or not, right in the middle of my mom delivering, I was sleeping! What the heecckkk. I had such a terrible headache and my vision problems were making me feel even worse. I forced myself to wake up because I really wanted to get picture of Norah, and as soon as she was delivered, I threw up...everywhere. I had to run into the bathroom and then continued to throw up for about 10 minutes. Still had a migraine, still couldn't see, but I managed to get some pictures of Norah..not anything that I wanted, but some is better than none, right? Norah Rose Grider. 6 pounds ? oz, 16 inches long. I wasn't really sure of the time because I had been coming in and out of sleep for about 12 hours, but I know it was sometime in the afternoon, around 2-3ish. She's doing well right now and aside from a small episode of Jaundice, she is fairly healthy for being a month premature. Absolutely none of her clothes fit her, but she'll grow into them :). 

Thank you all so much to whoever made it through this long post. I really appreciate it. 
I'm sorry about the blandness of it all. There was just a lot of updating to do and I really don't care right now about making it sound perfect or exciting. I just wanted to get some type of update out for people.
It's 3:35 AM right now and I have an appointment later today. I should really be sleeping because it's going to be exhausting, but I'm having a bit of insomnia right now. 
Oh well...at least I finally got to update everyone.
Three cheers to the new year! 
We'll see what's in store :) 

Doing IV meds on the road

Second day back at home

I'm number one, baby! 
While waiting in the ER

Norah Rose Grider

Necklace that I got for Christmas. The triangle stands for Delta in the CF gene, DeltaF508, which I have

Best friends finished tattoo for me

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