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

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

Fashion

I'm not really a huge fashion forward person, in fact I have a closet overflowing with clothes, but I prefer to ware the same outfits every week (after being cleaned of course) but I was invited to do a Fashion Show at the Dakota High School in Macomb Michigan last week to represent the Rock Cystic Fibrosis Foundation, so of course I did!
I had the honor of getting my hair and makeup done which looked like this:

I was also given a Tony Bowls dress from his Paris collection to wear for the evening.

I co-hosted the event with a girl who was from the school and I also sang "She Will be Loved" by Maroon 5 (Video not yet available). It was a wonderful event for a charity that is very near and dear to my heart!
It was the first time I stood onstage at a charity event and represent not only myself but the disease I have, it's something I hope to do more of in the future.
While the speech I gave that night could have been better, I am proud of myself for being apart of the event and so honored to have been invited!
The dresses was loaned to me from Joani's Fashions in Shelby Township MI.
The ladies there were nothing but kind and polite and helpful! I appreciate them for going out of there to support the cause and dress many of the ladies that graced the catwalk that evening!

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