Health Update

I am happy to say that after being on IV antibiotics for 4 weeks, today will be my last day. It has been a month of ups and downs, but it is relieving to be at the end of this jaunt. I was on two different IV medications Ceftazidime and Colistimethate both every 8 hours. The medications aren't so bad, but they tend to make me quite nauseous and tired, and when you're already sick it is exhausting.
I am looking forward to begin a job search once my meds are finished and start working out again. I plan on running a 10 mile in October and it is never to early to start training and practicing!
I am hoping that exercise will help my PFT's (Pulmonary Function Test) increase. My numbers before IV antibiotics were around 36%, which is down 10% from my last test. My PFT's don't normally increase after IV antibiotics, it usually takes an additional month before I see an increase.
My energy levels haven't quite gotten back to normal yet, but hopefully now that the meds are finished I can get back to my baseline maybe even do a little better then that!

Want to know more about Cystic Fibrosis check out the video below.

Vlog!

So I made this blog video the other day, it is the first of many to come!
It will go farther than being just about CF but since CF if a big part of my life i thought i would start there!
Check out my video and tell me what you think!

Also today is my first day off bed rest! Thank goodness I was going mad! And so far so good, i've been feeling a lot better and I can walk farther than 4 feet without feeling out of breath! Which is the first time in a long time!

bed rest?

Well i'm on bed rest until i go to class Monday. I had an appointment with my doctor today and he's really concerned with my health i am not to be getting out of bed unless I absolutely need something.
What am I supposed to do in bed for four day?
I admit I have been super tired lately so the rest will probably do me good.

I start IV antibiotics tomorrow, i am on a different medication so they want the home care nurse to "teach" me how to infuse it and watch me to make sure I don't have a bad reaction to it. I'll be on them for 2-4 weeks depending on how I feel each week, and I'm not rushing it! Normally i try to get off them as soon as possible, but not anymore!

My PFT was lower than it has been in a really long time it was 33%, which is down 8% from the last time I was sick in December. My PFT's haven't been this low since i was 7-8 years old and after that my Doctor sent me to a lung transplant doctor in St. Louis. I was taken off the lung transplant list 2 years ago, hopefully I can stay off it! It's made me nervous but I am sure all will be well!

Wish me luck!


Marissa

Phone Interview!

Earlier this evening I had my phone interview for the Disney College Program. I filed my initial application on Friday. I was really nervous in the morning because I woke up with a bad head cold. I was congested in my nose and chest so bad I couldn't breathe or smell anything! And I sounded like Chuckie Finsters dad, but I got it cleared up enough to sound normal by the time the phone rang.
 Here's how it went:
My interviewer was Connie and she was a complete sweet heart! She asked my about my intentions with the Program and why I wanted to be apart of it and then continued to ask me about my top 2 roles and how my work experience qualified me for them. She also asked me a few questions about how I work and what type of working environments do I prefer and work best in.
At the end of my interview she asked me if I had any questions or concerns with anything and I expressed my concern about having Cystic Fibrosis and being allowed to have my medications in the housing that Disney provides. She assured me that is would be no problem and that I shouldn't even be questioned about it from the staff.

I felt really good about my interview. I was a bit nervous, but I felt good about my answers to her questions, we even had a good laugh about the weather. I am satisfied with my interview and at this point I just hope it was good enough to put me above the rest of the applicants.


Wish me luck!

Marissa

I have made a decision, a decision that will change my life hopefully for the better but we'll see.
I don't think I am going to continue with the college, at least not like I am it is not the most important thing in my life, and while I have tried so hard to make it, it will never be.

Maybe this is a reality check, maybe it's nothing at all.
I am really tired, and I've been very sick the past 5 months I've been on IV antibiotics and they didn't help, I spent a week in the hospital and nothing. I've been pretending i'm fine, that it was all nothing that it was going to go away, but It won't.  I can't walk up a flight of stairs without needing a 5 minute break to catch my breath. I have spent a long time pretending but i think it's time to realize that I am sick, someday i won't get better, there will be no fixing me and I am grateful that it isn't today, and I'm done treating today like it's nothing.

I've decided that I will jump head first into the dreams I used to plan my life around, no matter how childish or unrealistic people think they are.
I sing. I love to sing, and I am SO lucky to have a voice.
I've lost friends, fellow Cystic's and I want to be their voice. I want to stand in front of people and tell them that I am a Cystic, but I am also lucky to experience life because some people never do.

I want to teach people that life isn't something to be quoted or stared at it's something to be experienced. Speak the words live in those moments you think are impossible because they're not.

You're not impossible.


Marissa Parks

I Confess!

Okay I admit it, I am a terrible Cystic. I am awful at taking my medications and treating my body correctly, but i'm working on it!
I get lectured all the time by my parents about not doing everything perfectly and honestly I know i don't but their comments and all that lack inspiration and really only make me feel bad about myself.
I should really consider myself lucky though, i take a bit of pills, but some people are on a lot more medications than I am. I just have a hard time remembering to do it. That sounds silly to a lot of people, yes I've been doing this for 20 years, but it's still something I have to remember to do. It takes a bit of time out of my day.
Just being random i thought I'd list all of my medications and when they're taken, maybe, hopefully this will inspire me to be better at taking me all

Morning

• Albuterol Breathing treatment 
• TOBI breathing treatment
• 10,000 IUs Vitamin D (5 caplets)
• Prilosec 
• Multi Vitamin
• CF Source Vitamin
• Vest (30 minutes)
• Rhinocort nasal spray
• Azythromycin (only Mondays, Wednesdays, Fridays)
• 5 Enzymes (if i eat)
• Ciprofloxacilin

Afternoon

• Albuterol Breathing treatment
• Vest (30 minutes)
• 5 Enzymes (if i eat)

Evening

• Albuterol Breathing treatment
• Pulmozyne breathing treatment
• TOBI breathing treatment
• Zantac 75
• Rhinocort nasal spray
• Azythromycin (only Mondays, Wednesdays, Fridays)
• 5 Enzymes (if I eat) 
• Cirprofloxacilin 

And I know i am missing a couple, so this will definitely be edited in the near future to include what I'm missing. 

This list also doesn't include the medications that change monthly, these are just the ones i'm taking right now.

Oh and no matter how often I take my medications or for how long, i will never be able to spell them. 

Wish me luck on this list!

Marissa

Patience

So I went to class this morning, but I ended up getting really sick so i came back home. Now I have resorted to laying on the couch watching Kitchen Nightmares before I get the courage to start preparing dinner for my family. On the menu tonight Creamy Cajun Chicken Pasta! One of my favorite dinners hopefully i'll be able to eat it.
On top of all that I am trying to be patient and wait for the Disney College Program applications. I have been waiting to apply for the program for about two years now after i first heard about it, and this is the right time for me to go off and work at Disney World! It is important for me to get this CP because I hope to work with Disney in the future so getting my foot in the door here is a great start! Rumors have it applications will be out sometime this week, right now everyone is expecting Friday since they haven't come out today (yet) but there is still hope for tomorrow!

I am ready to be living and breathing at Disney!
Just let me go!

Marissa

Bed time

Goodnight my friends,
Today was a long day, I've been coughing a lot more and my chest has been sore all day so hopefully I can make an appointment to see my CF doctor next week or the week after. See what he has to say about everything. I just finished IV meds the 15th of December so hopefully I won't have to be back on those for a while, but I feel pretty crummy.
It would be nice to feel good for a little while, I haven't really felt alright in a few months, which makes me a little nervous, but all will be fine I'm sure!
I had a lovely dinner out with my family tonight, and have lots of homework to get done tomorrow to be prepared for classes Monday and a presentation to prepare for.
Monday marks the half way point for the semester and I'm excited! But that also means I need to get started on the final report I have for one of my classes!
We'll see how well that goes over, I'm such a procrastinator!

Best Wishes,
Marissa

Welcome to February!

A month or love and wonderful things! My favorite part of February is when winter starts to end and spring begins!
I don't have a monthly goal yet other than my long term goals. I will keep working out so I can jog the 5K in March, and I hope to keep my grades in a successful place so I can make the Deans list this semester.

I started a new college this semester it's Baker College of Flint it is a business college I am studying Business Management. I spent a year and a half going to Iowa Central a community college in Fort Dodge IA where I studied music and met some of the best people!

I can't wait to continue my journey into the month of February! It's going to be a great month!

Best wishes,

Marissa

Welcome to my Life!

I'm terribly bad at this introduction thing, but i'll give it my best go.

I am Marissa Parks,

I'm a Nerd, Geek, Freak, Whovian, Jonite, musician, singer, dreamer, believer, traveler, and a Cystic and over all I just really enjoy life!

I'm 20 years old (as i write this) I am from Michigan born, raised and proud! I've been on a lot of journey's in my life, and I have so many more planned.

I have Cystic Fibrosis, it's a Genetic Disorder that causes my lungs to hold infections a lot easier and it causes my body to not take nutrition out of food when I eat. So basically that means breathing is a chore and gaining weight is harder for me than it is for others to lose weight. I have semi frequent hospital admissions and i am often on IV antibiotics, but it's never stopped me, i won't let it.

Music is extremely important to me, it is very difficult for me to explain what it means because in retrospect it means everything to me. Music is hardwired into my DNA it's something I could never live without. I listen to every kind of music and I enjoy most of them if not all. I believe in giving everything a chance, if someone else loves it there is a reason and I will always try to find that. Music is part of my soul.

I am very passionate, when i have my heart set on something I do everything I can to make it happen. I love working and trying new things and seeing new places and just living! 

In the past year I've lost 2 year friends to Cystic Fibrosis and I have vowed that I will live every experience I can, i will try everything and I will live.

Everyday is chance to show the world what your made of, and someday I hope to be remember for making it a better place. Maybe not by savings lives or inventing something grand, but i hope to show the world how to live just a little bit more everyday.

Best of luck out there!

Marissa