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, March 21, 2013

We can only hope, right?

I am here -- club med, my second home, whatever you want to call it. It's now 9:16 PM on Thursday and I've been here since last Friday. Kayla brought me up and I'm so thankful for that. It made a very stressful, draining situation into something a lot more tolerable. She not only drove me up here, but she carried all of my bags, stayed for several hours after I was settled into my room and asked continuously if I needed anything -- she's a saint. 
I typically don't like the first day/night of being admitted. There's the port access and then the team of nurses, doctors and residents that all go over and ask the same routine questions. Everything generally takes a couple of hours and through-out all of it, the only thing I can think about is how bad I want to be left alone so I can sleep. This was the first time since switching to U of M that someone hasn't gotten my port accessed on the first try. I knew it was a miss as soon as the needle went in. I mean, it's a one inch needle being pushed directly into my skin, how can I not know? I bled quite a bit after the needle was removed and, being myself, I was goofing around and said (a bit too loud) "I'm bleeding out!" I wish I could tell you that a bunch of nurses came running in because that would be a great story, but that didn't happen. The second try was a success and I had a beautiful blood return. 
The first few days were rough, as always. I was extremely exhausted, my fevers weren't going away, my O2 was lower and wouldn't come up, I had no appetite and I was beyond stressed about school. I had a bunch of work to make up within the next two days but my eyes were burning and I broke down crying from exhaustion and stress more than once. I finally caught up and decided that I am not going to take classes next semester. I need a break. Even if it's just from school, I need something. The semester is almost over and I am quite proud of myself with the grades that I have despite how many times I have fallen ill. 
My sinus surgery was supposed to be on April 1st, but has been rescheduled for this coming up Monday, the 25th. Dr. Simon and the ENT want the surgery to be in the middle of my course of antibiotics rather than towards the end to help make sure there's no infection like last time. I did a terrible thing and watched septoplasty procedures on Youtube...don't ask me why. It's not like I didn't have enough anxiety about it already. What the heck is wrong with me? On a positive note, my mom and Kayla will be there and Kayla promised to hold me while I cry and bleed all over her ;).
As of right now, I'm definitely doing a lot better than when I came in. My white count was 25 on admission and then kept going down more and more and is currently at 10, which is great. Apparently there's not air moving through the upper and middle lobe of my left lung, which would explain my pain on that side. Last time this happened on my right side, I ended up having a collapsed lung, but I think they caught it early enough and I've been getting CPT extra on my left side. There's still pain, so I'm not sure what the verdict is, but I guess we'll just have to wait it out and see. I'm only using oxygen when I sleep and I've been able to walk around more and more without getting short of breath. My magnesium is running low, but that has seemed to been a problem the past few times I've been admitted. Simon told me it could be because of the antibiotics and them messing with my kidney functions.
I'm hoping that after the sinus surgery, things will start to turn around a bit. I think I've been getting so many infections because of nasal drainage and since there's Pseudomonas in my sinuses, it's then going to my lungs and causing flare ups.
Ahhh well, we can only hope, right?

Wednesday, March 13, 2013

I'm just so tired

I once read a quote that said, "The eyes are the window to the soul."
Yes, I know, it sounds quite corny, but to tell you the truth, I have always loved that quote.
These past few days haven't been that well. I now have a full blown infection again. The more I get, the faster they hit. When I started getting sick before, I used to hold it off for possibly weeks at time. It probably wasn't the best of ideas, but it seems like 80% of the time, there's some event coming up when I start to get sick. When graduation was around, I started getting sick about two weeks before. At first, it wasn't bad at all and I had actually thought that it was going away. Nope, a few days before the graduation, it hit me really bad and I was miserable. I vowed that I would walk no matter what though and that I would not have anything attached to me -- not oxygen and not even my port accessed. (I always get sidetracked...) So, as I was saying, I am currently sick again. What started last week as a stuffy nose, chest congestion and increased cough has now led to...well, you know. I'm sitting here in my bed trying to catch my breath...why? Not because I just walked a flight of stairs or not because I was doing anything remotely energetic, but because my lungs are fucking shit and can't function properly on their own. I've literally been sitting here for about 20 minutes...just sitting...and I still can't catch my breath. I've tried deep breathing exercises, I've tried moving positions and I've tried stretching my back as much as possible, but there's no subsiding it. I can tell that my O2 is low when I don't have my oxygen on, but I don't want to be fucking hooked up to oxygen 24/7 right now. I am just wearing it whenever I'm in my room and especially when I'm sleeping. If I'm in the hospital, I can deal with wearing it 24/7, but not at home. Not where my family can see the evidence of my <30% lung capacity tapered to my face. I'm still smiling. I'm still laughing. I'm trying so hard not to let it be noticeable.
That's where the quote comes in. My mom is possibly one of the only people that can tell when I'm not okay. Upon sitting at the kitchen table and laughing with my family and not showing how fucking bad my chest hurts, my mom sees it. Hours later after everyone is calmed down and settled in for the night, I am sitting with my mom. "Your eyes have that look." And that's when I know that she can see it. Not only now, but she noticed it as soon as it began. She asked me what I had planned on doing and I just flat out said, "I don't know. I don't want to be back in the hospital already. I just need a few more days." We both know that when I'm at this point, I get worse everyday until I am admitted. I hate feeling this fucking miserable, but at the same time, I'm not taking any initiative to make it better. I mean yeah, I'm doing my treatments and taking all of my pills everyday, but this is beyond that. I need IV treatment, I need a higher concentration of oxygen, and damn it, I need some rest.
You know that saying, "Sometimes when I say "I'm okay", I want someone to look me in the eyes, hug me tight and say, "I know you are not..." My mom is that someone. I'm okay with hiding how I'm feeling, I don't want my family and best friends to truly know just how much pain I am in, but sometimes I just need that one person.
Sometimes I have tears well in my eyes without others knowing because I am just so tired. I'm so fucking tired right now, but I can't sleep. I was up until 8 this morning and I managed to sleep for 2 hours. I tried so hard, but I just can't sleep. I'm coughing so often and so hard that I'm literally vomiting on the spot. Earlier today I was laying in bed and I started having a cough attack and then...I just threw up...all over my computer, all over my bed and all over myself. I started cleaning it up and then I had another cough attack and threw up once more. I just broke down with how much aggravation, fatigue and pain that I was in. Should I go to the hospital tomorrow? Probably, but I just got out three weeks ago. Maybe I can wait until Monday? Oh wait, I have a Lindsey Stirling concert on Saturday. How the hell am I supposed to enjoy that? I'm not exaggerating when I say that I can't walk more than a few steps without being completely winded. This is supposed to be a weekend trip and at the moment, I can't even get out of bed until roughly 2:30 in the afternoon. I'm having trouble talking, eating, walking, fuck it...I'm having trouble just with sitting. One of the things that pisses me off the most is that I am struggling to laugh. I hate that. I hate it so much. Laughing is literally one of my favorite things to do. Earlier, I was with one of my best friends Kayla and every time we're together, I swear I grow a new pack of abs from laughing so hard. So I start laughing, and almost immediately, I have to try and stop myself. My body gets extremely hot and clammy from trying to gasp for air. One of the moments hit where you feel yourself starting to get dizzy from the lack of oxygen. I eventually catch my breath again (as utmost as possible, of course) and I just feel defeated. I feel exhausted and emotional from the lack of sleep and from how much effort my body is putting into just breathing. I just want sleep. I want a good, peaceful and long sleep.

"Just breathe..." they say..
Ha, yeah. If I could, I wouldn't have any of these problems.

Saturday, March 9, 2013

Mutated Roses

They say roses are meant for love
And roses are meant for peace
But these roses shed blood
These roses are quite unique

Instead of the typical dozen
We are dealt with 65
We must learn how to function
We must learn how to survive

As our bodies grow weaker
Our minds become stronger
As our roses become the leader
Our days aren’t stretched much longer

Thorns leave behind defections
These soon become our heroic alterations
Our roses aren’t signs of affection
We must learn to accept our gene mutations

We are much more than sisters and brothers
We are cysters and fibros
Once there is a passing of another
The sorrow overflows

Although someone may have passed
It doesn’t mean they have succumbed to the fight
Although that crackly breath was their last
Their strength and soul still ignites

In spite of the fact that roses have deadly thorns
There’s a beauty within them all
Between tears, pain and all of the mourning
We have learned to accept this brawl

Alexandria Rockwell 

I'm a bit broken

"I'm disappearing, avoiding most things."
I came to the conclusion that, even though I may have hours on end to update my blog, I never really want to when I'm having a downfall with my health. Mentally, when I'm having a dark moment, I feel as if I could write for hours. Physically, I just don't want to. I can't. I've realized that it's hard for me to admit when I'm sick. A lot of times I will try to hold it out as long as possible before really telling anyone that I'm sick, and usually, I don't have to tell anyone because at that point there's no hiding it. I used to be able to hide my illness a lot more than now. When I'm sick, it's evident. I can't breathe. It's not just walking up a flight of stairs and running out of breath. It's walking 10 steps and having to stop and gasp for air. Not slowly catching my breath...but gasping for it.
Anyway, here's your update.

On January 31st I had an appointment with the pulmonary doctor. My lung functions were 27%, my weight was 98 pounds,  O2 was 92% and my heart rate was running around 130-140. I was obviously not feeling too well and was put on three oral antibiotics, Bactrum, Cipro, and Minocycline, which I have never been on. I've always tolerated Bactrum and Cipro perfectly fine and almost always had positive results. My appointment was on Thursday. By Sunday it had felt like my lung functions dropped 10%, I was running on 2 hours of sleep, my O2 was running around 87%, I hadn't ate in three days and I was running fevers of 104. By Tuesday I was hospitalized and started on IV Tobra and Ceftaz, which I like to call my magic drugs. After about a week and a half, I had felt better than I have in over two months. I was no longer needing oxygen during the day, my heart rate was staying steady at about 70-85, I was not running any fevers and I had put on 4 pounds. I was discharged after 12 days on February 16th.
On February 22nd, I had another appointment with Dr. Simon. My lung functions were 38%, my weight was 104 pounds, 02 was 93% and my heart rate was around 90-100. I was no longer running short of breath after 10 steps, my appetite was phenomenal, and for the first time in awhile, I just felt exceptionally relieved. Ahhhhh...I'm finally getting somewhere.
After a three week course of IVs, I had deaccessed my port.

But alas, roughly a week later, I had begun another bout of infection. I had gotten my PFT's checked two days ago to send to the disabilities office. My weight is down to 101, my high PFT was 33%, my heart rate was about 120 and my O2 was 92%. My appetite is gone, my fevers are back, my chest is sore, my body is exhausted, and I can no longer walk the flight of stairs to my room without losing my breath.
I am scheduled to get sinus surgery on April 1st. It was planned that I will be starting home IV's the week before just as precautions, but I will more than likely not be doing home IV's. I will instead be doing them in hospital.
I'm a bit broken at the moment, but that doesn't mean that I can't be repaired.
Just give me two more weeks of freedom.

On Valentine's day I was sent chocolate covered strawberries by Edible Arrangements from my mom. The card had read, "Alexandria darling, you will always be my valentine. Keep dreaming big, you never know what tomorrow will bring. Love, momma."
I was also sent flowers from the lovely Joshua Pauken.

A week after being admitted it was time to get my needle changed for my port. The access went great, but there was no blood return so I was sent down for a port study. The doctor couldn't see anything wrong, but the flush was hard and there was still no blood return. I would have been put under and my port would have been replaced, but because I didn't listen and ate when I wasn't supposed to ( oops :p)  they were not going to do the surgery that day. I was scheduled to go in the next day, but the doctor quickly came out and decided to try running TPA (helps breakdown of blood clots) through it. An hour later, and my port was working better than it had in months! It was the first time in 2 1/2 years that I had needed an IV. Luckily, I have one really good vein...the rest are useless.