Burrowed time

Today was rough.
I think one of the most difficult things about living with this chronic illness is the unknowing.
One day you could be running around, laughing nonstop and it may feel like the world is in your hands.
The next day, your lungs are drowning, fevers leave you in pain all over, breathing is the only thing you can focus on.
Breathe in, breathe out.
I can’t.
It hurts too much.
I’m beyond exhausted. The burn of my eyes due to the amount of energy that my body is exerting into just breathing is unpleasant.
I can’t shake it away.
I was fine three days ago.
I can’t eat. I can’t move. Even talking leaves me breathless.
My weight has dropped from 102 to 95 in four days, my oxygen levels are only running at 83% on room air, my heart rate is around 140.
I’m on fire, but then again, I’m freezing cold.
I don’t want to be oxygen dependent.
I don’t want to be held back.
There’s no freedom with this disease.
Everyday is burrowed time.
Everyday is a gift.
And I will keep living it to my fullest potential
Despite the grueling battle.

Mood = Content

I am so content with life right now.

Maybe it's the Iron and Wine playing in the background or maybe it's because I just stuffed my face with endless amounts of candy, but whatever the reason being, I am so content.

Life is great.

I am happy.

I am spoiled with love.

The weather is beautiful.

There's just so much to live and be happy for. 

How can I not be grateful for life?

I am here.

I am alive.

Not just breathing,

but I am alive.

P.S. Update coming soon...

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?

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.

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.

Morals

A doctor entered the hospital in hurry after being called in for an urgent surgery. He answered the call asap, changed his clothes & went directly to the surgery block. He found the boy’s father pacing in the hall waiting for the doctor.

On seeing him, the dad yelled:
“Why did you take all this time to come? Don’t you know that my son’s life is in danger? Don’t you have any sense of responsibility?”

The doctor smiled & said:
“I am sorry, I wasn’t in the hospital & I came as fast as I could after receiving the call…… And now, I wish you’d calm down so that I can do my work”

“Calm down?! What if your son was in this room right now, would you calm down? If your own son dies now what will you do??” said the father angrily

The doctor smiled again & replied: “I will say what Job said in the Holy Book “From dust we came & to dust we return, blessed be the name of God”. Doctors cannot prolong lives. Go & intercede for your son, we will do our best by God’s grace”

“Giving advises when we’re not concerned is so easy” Murmured the father.

The surgery took some hours after which the doctor went out happy,
“Thank goodness!, your son is saved!” And without waiting for the father’s reply he carried on his way running. “If you have any questions, ask the nurse!!”

“Why is he so arrogant? He couldn’t wait some minutes so that I ask about my son’s state” Commented the father when seeing the nurse minutes after the doctor left.

The nurse answered, tears coming down her face: “His son died yesterday in a road accident, he was at the burial when we called him for your son’s surgery. And now that he saved your son’s life, he left running to finish his son’s burial.”

Moral: Never judge anyone….. because you never know how their life is & what they’re going through

Hot bath, Mountain Dew and sleep

January 11th- CF clinic appointment with Dr. Simon.
My weight was down to 102 from 106 at my last appointment. My Pulmonary Function Test's were 27%. O2 was running about 92 and heart rate was 109ish. We decided to continue with what antibiotics I was doing and if by the 16th I didn't feel any improvement, then we would switch them. Dr. Simon called me on the 16th and told me that the culture just came back and said that my sensitivity to antibiotics changed and we needed to switch them. We stopped the Imipenem and I am now doing IV Tobra every 24 hours and IV Ceftazidime every 8 hours. I literally just did my first dose, so I'm still not doing any better. Hopefully I'll start to notice improvement over the weekend.
As of right now, I am really not doing too well. My O2 has been running about 90 and my heart rate has been 120ish. I'm having a difficult time with movement and even the slightest walk will make my heart rate sky rocket and my O2 drop. I've been running fevers again and it was 102 last time I checked. My weight is awful. I checked it earlier and it said 97 pounds...97...
University of Michigan has this website called MyUofMhealth.org where you can view previous and upcoming appointments, view lab results, refill prescriptions, write the doctor a note, cancel appointments and blah blah blah. My blood labs came back and my white blood count is 15..a normal is about 4-10. Dr.Simon said that this is because of infection and anemia, which I now have due to my low potassium and low magnesium from my kidneys.
I go back January 31st.


January 16th- Sinus appointment with Dr. Zacharek
Sinus surgery is planned to be scheduled for mid-February/early March. I have to wait for the surgery scheduler to call me. He's going to fix my deviated septum, remove the massive amount of scar tissue, and open up my Maxillary sinus on the right side because it's completely closed off. There's not much sinus buildup, which is amazing...one less thing to worry about. He said that the surgery will take about two hours and will be a bit rough afterwards. He is having an anesthesia consultant talk with my doctor about making sure that I'll be fine during surgery since my PFTs are so low. Dr. Zacharek told me that for surgery, they consider 60% PFTs to be a C/B- soooo yeah. I'm not worried about the anesthesia though because I've always done okay with it. I have to have oxygen on for a bit afterwards, but have never had any problems relating to the anesthesia. BUT my last sinus surgery was a disaster, so I'm a bit nervous about that. I have a different ENT this time, so we'll see how things go.

Okkkk, so for some exciting news!! I bought Lindsey Stirling tickets for March 16th! Weeee!!! I went to a concert on her first tour and really am looking forward to going again. I'm going with my brother, our best friend, and hopefully my brothers girlfriend.
Also, Joshua got out of the hospital two days ago :) He went in January 6th and was discharged January 16th. He's currently on home IV's and is being treated for infections.

I'm really really tired and need a hot bath, some Mountain Dew, and a good nights sleep.
I've had a bit of insomnia this past week and haven't gotten more than a few hours of sleep every night. I'll try to go to bed, but I just can't. I fell asleep around 1:30 AM the other morning and woke up at 4:30 AM...no matter what, I just couldn't fall back asleep. Its been a repeat of this and my body really just needs to some rest. 

 Sinus Surgery September 2011

 While waiting for the ENT

Last Lindsey Stirling concert

Today

Today is not a good day. 

Today I am tired 

I am sad

I am exhausted

I am struggling

Today is not a good day.

I didn't crawl out of bed until almost 3:00 pm

My body hurts

My lungs hurt

My chest hurts

Today is not a good day.

My breathing is worse than yesterday

Crackly

Shallow

and much more difficult

Today is not a good day.

I am having a hard time 

with everything

I must confine myself to the couch 

and just breathe

I am so grateful for the health that I DO have, but I just need a moment to break.

I am shaking and I feel so weak right now.

I can't force any food down because honestly, even eating exhausts me today.

I feel as if my lung functions have suddenly dropped 10% overnight. 

I have tears rolling down my cheeks because...

well, this is why. 

It's okay. 

This is today. 

Today I must just simply stay in my pajamas and watch movies.

Tomorrow is another day.

I have tomorrow.

Oh yes, I have tomorrow.

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