Sunday, November 1, 2009

Insert clever title here

I'm stressed out. I just got out of the hospital around one week ago and already I am running fevers, throwing up, coughing my lungs out-- the same old tune. Not a song I want to be singing right now, let me tell you!

I also have a TON of schoolwork to do, and yet I cannot for the life of me, sit down and make myself do any of it. I think I will barely get by this semester. Unlike my boyfriend who goes to school and does work, comes home and does work, eats, does more work, then goes to sleep. I swear all he does is work, all the while I'm over here lolligagging. Which then makes me feel even worse about not doing work.

Thanksgiving is soon and already people are asking me about christmas. which reminds me of the fact that I need to get some serious presents. ESPECIALLY my sister, because I forgot to get one for her graduation and her birthday. oops!

Well that's all I think I came to rant about. the end.

Sunday, October 25, 2009

Rainbows and fresh starts

Today was such a great fall day. It was on the warm side, with 81 being the high, but had such a lovely breeze from the changing trees. All in all it was awesome. Today, ultimately wasn't about myself. I helped out someone else in need. I gave my attention to someone who wanted it. I put my life on hold for a moment to be a part of someone else's. I do miss being home, but I feel like family at Jeanette's. And with real family being 9 hours away, I'll take anything I can get, but boy did I get lucky. Maybe there is a god who brings people together for certain reasons. Right now I do believe that we have been brought together at a time where we can lean on each other. And that is very comforting.

On the CF aspect of things I went for a bike ride today(which I would like to say I saw the most amazing rainbow strewn across the sky) and boy, was I huffing and puffing after a while but this time it felt good. I felt like I was enabling my body to keep going, it was so motivating. I always struggle with motivation and I think it has to do with my emotional status. If I am emotionally satisfied I become much more motivated, than when I am emotionally struggling. Lately I've been emotionally satisfied, and even pleased.

The world is so much prettier when all your pieces are fitting together nicely.

Saturday, October 24, 2009

Learning to love

I learned a lot today. I am out of the hospital with a lung function around 69/70%. I'm staying with the woman I work for (I babysit) until my kyle has gotten over the flu. Jeanette (technically my "boss") has taught me a lot in the few months that I have known her.

She sees a strength in me that I sometimes struggle to see myself. She uses the word 'brave' to describe my battle, and 'positive' to describe my fighting tool. Now, I have never thought of myself as 'positive' in any way before but hearing her describe the light she sees me under almost makes me feel guilty. I feel like I'm cheating; being someone I'm not. I would love to change and be that person she describes and sometimes maybe I am that brave, positive, strong person she describes, but other days I'm only human and I hurt, cry, and yearn.

Today the tables were turned and it was not I receiving the positive encouragement, but rather doling it out. After a long, very hard and stressful day my Jeanette returned crying. Even through tears I could see her strength, her bravery, and her positive perseverance. My heart cried out to her to see her hurt. And it was then I discovered we all need love. We all need to learn how to be loved and how to give love. Today I gave all the love I had in my heart to this woman I've known for a few months. I feel like family and when family hurts, you hurt. I look up to Jeanette in so many ways. I see her as the wonderful, successful mother I would someday love to become.

I learned a great lesson today and I feel very thankful that somewhere in the universe I was given this opportunity. I know I'm probably sounding like a sap -- but I really feel blessed to have met this family, and thankful for being shown that we all need to love and be loved.

As always,

Wednesday, October 21, 2009

for anyone who has Cf, you know what it's like to know you need help. I needed help. These past few weeks I had just plummeted - mentally, physically, emotionally. So when I went into clinic on Wednesday October 7th I was somewhat aware that I might need to go into the hospital. What I didn't expect was my FEV1. It floored me. My first blow was only 43. My second 47. My third and final blow was 50. Talk about your heart dropping into your stomach.

No wonder I hadn't been motivated, or done housework, or school work, or anything! I was 20 % my baseline. I was sick, and I needed help. Dr. Williams and I agreed that I would come in on monday - that way I would be able to get off of work, pack, tie up loose ends, etc.

I was called to come in around 830 and within the hour. Everyone was so nice and made me feel so welcome and comfortable. My nurses are great and even know how to do chest pt, ensuring I get the correct 4 times a day.

My stay has been so enjoyable while I've been here, again I am just in awe. It's so different than Rhode Island and I love it. I'm feeling great, my numbers are back up to 70/71%!! Which is higher than when they first ever saw me. They fixed my screw up of a stay at jane brown, which I couldn't be more grateful for.

I'm leaving tomorrow or friday, and I can't wait to get back to the apartment and clean, do dishes, do laundry, go play, run around, and dance. I cannot wait!!! This -- when I'm healthy-- is when it's so easy to love life. I feel hopeful, and greatful, and so appreciative that I can actually experience the warmth of the sunshine, and the crispness of the breeze.

for now,

Friday, July 24, 2009

Social Security: None for you silly girl!

I hate social security. I hate the process, the people, the deadlines, the excuses, the label of having a disabling condition, but then being denied because you're not 'sick' enough.

What does the government think Cystic Fibrosis is? Something that we can fix? Negative.SO.....

Dear social security,

I would love it if you just accepted your fate in the fact that you must supply me benefits. There is no way you cannot deny me yet AGAIN. and again, oh, and again? If I am not 'sick enough' to receive you, then lord only knows what you actually do accept.

so deny me all you want! I will keep coming back knocking on your door until you let up and give me some money!

Your 'not sick enough' cystic fibrosis applicant.

Thursday, June 25, 2009

Mama Said There'd Be Day Like This...

Well, here I am. Looking out of my dully, very dirty window, I'm staring at 95. . . in Rhode Island. The past three miserable weeks have built up to this. Coming back running to RI to get some help. A Tune up. It's funny they call it a tune-up, but it really is a tune up. 

Since I'm twenty I went to the adult ER. I waited for twelve hours to get a room in a hallway where no one has ever heard of Cystic Fibrosis before. I had a doctor ask me what one of my medicines stood for... it was the name, and it didn't stand for anything. 

I'm doing a little better now. I guess I should grow up into the adult world I've been thrown into. I need to just suck it up and grow up with my surroundings. I am grateful that I know what's going on, and that I pay attention. I'm so glad my parents taught me to be independent, along with advocating for myself. 

In some ways I feel that my late childhood was tough. I was stuck home alone for two years, with a falling apart family. I had parents who hated each other, and I hated them for it. I had a sister who was drinking her life to the drain, and who was with a less-than-suitable match. I just wanted to scream, run away, anything. I can remember working up to 40 hours at Panera just so I would have to go home. I hated my parents for putting me through that. Finally I grew up, and you learn to forgive. You never forget, but you forgive. 

I need to start forgiving. I need to forgive the nurse who doesn't know what tobi is, or the nurse who doesn't know I need 8 enzymes. I just need to start forgiving and letting things go. I tend to take things too personally, it's a flaw that I find most frustrating. I need to let things go. I need to let a lot of things go, but it's so hard sometimes teaching yourself something that feels so unnatural. 

I was talking to my father today about being bi-polar and on medication. I explained that I can't figure out who I am because I'm on medicine and I miss the mania. I miss the fun, the excitement, the giggling, the energy: I miss it. I can't tell if my personality is more dull without mania or if my dosage really isn't correct. It's such a fickle thing. 

I am thankful that I have people so special in my life, helping me through this tough journey. I would be hopelessly lost without those I love, and those who love me. I would be drowning without a helping hand to pull me out. So, thank you for all those times you saved me without  knowing. I don't say thank you enough. I love you. 

That's all for now. I only have 5 more days in the hospital then back to my love and the wonderful virginia weather. =) Back with a new attitude and a new outlook. 

Wednesday, June 17, 2009

Lost: my FUN, if seen please return ASAP

I used to be a goofball. I used to crack up until I fell off of my seat. Where did that girl go? How come I can't seem to find her, and all I can come up with are Debbie Downers' and Negative Nancys'? I understand life isn't supposed to be easy, and it isn't supposed to be fair, but not fun? Life should be fun. All I want is my fun back. I lost it somewhere along the way, whether I lost it in medications, exams, or friendships, I want my fun back. I'm having a very hard time staying positive when I can't even find a little fun. 

I know I'm not feeling well, and it probably doesn't help that the psychiatrist gave me expired medication -- thanks doc ! -- sigh. But, nonetheless, I"m bound to take it every single night, becuase without this stupid yellow half a pill, I might breakdown and decide slitting my wrists is more important than fighting through this fun-less cyclone. Or better yet, I might go manic, and decide I'm above everyone else and go on a sticky-fingered rampage through my favorite stores. 

Most of my life that I can remember well, I have been -- apparently Bi-polar for. Thanks fam. for not letting me in on that! Naaah don't worry it won't screw me up or anything. Now, I can't seem to find who I am. I don't know who I'm supposed to be with medication. Am I really this anxiety ridden worry wart? What fun is that to sit next to, it might be contagious. 

I want to giggle again, make stupid faces, laugh until I pee. I want my family to be more supportive for me, and I want a job that I love. I want so many things out of life, but most importantly I don't want any of them if they aren't going to be fun. I want my fun back. So if anyone's seen my fun, please return it to me? 

Wednesday, May 20, 2009

Days like these...

It's day's like these where I feel tired. Just plain old tired. It's days like this that make me wallow in doubt. Was I really supposed to move down? Is he really supposed to love me, or did I manage yet again, to mess up his life? I am just a selfish person? 

These are the days where I feel like a screw-up, a mistake: a defect. What's my life plan? Why am I here? I wouldn't be here if it weren't for medicine so why am I here? And then I feel guilty. I look at kyle and all I see is love, but what kind of life does a 19 year old have loving a terminally ill girlfirend? Someone who's just going to leave him and who needs so much. What possesses him each day to continue to love me? I wish and pray everyday that I can be as strong as he is, somedays I can't even deal with it and then he goes about like a normal loving day. Where does he get his strength from? 

I hope I can grow old with him. And give him as much love as I possibly can. I hope he knows I have good days and bad days, but I love him all the time. I hope he knows I want to try and fight but sometimes it's too hard. So I hope he will understand that I need him. 

Kyle, I need you

Monday, April 13, 2009

Moving on Up (In this case down)

I am moving to Virginia in 19 days. That's right 19 days. Kyle and I get our apartment in 20 days!!! I am so excited. So I called all the places around town renting and asked them all a million questions and we were able to narrow it down to 3 places. I sent him out looking at them and he came back with our apartment. =) 2 Bedrooms, 750 square feet, central air/heat. . . It looks nice. It's priced nicely too at only 699/month. 

I am very excited, but I have to admit, I am a little sad. There are things that I know I will miss when I move out of Rhode Island, and the main thing I will miss is the beach. Being a little Rhode Island Girl, with grandparents who lived within walking distant of a private beach.... you could say I was spoiled. Just a little... ;-) I'll miss just the vastness of it. Especially in the wintertime/fall/spring. The times no one bothers to acknowledge it's beauty. I think that is when the beach is the most beautiful. So I know I will miss my beach when I'm down in Virginia. But I'll be with my baby!! It's all worth it. 

Moving is tough. I have to go through all my things and see what I have and what I don't use and what I'd want to take down, etc etc. Luckily, my mom is moving, so I have free dibs on any of her furniture/anything. She's moving in with her boyfriend, so I even get a pick from dishes, pots/pans, vases, you name it I can take it. 

This is definitely an exciting chapter in my life. A brand new start, and I cannot wait! I am also excited about going to a new CF center down in Richmond, VA. I think this is a great opportunity to really advocate for my health.  I do feel limited at my current clinic, because they have known me for so long. I switched over into the adult clinic a few months ago, but I am still well-known as it is a small clinic.

I think the move will open so many opportunities, and experiences. I think this is the best thing for me right now, and it's my life is all starting to fall into place. I was talking with Kyle's parents the other day, and I had mentioned that, and his father said "that's how you know it's meant to be, it just falls into place." Which is 100% true. You should never fight something, what happens is meant to happen, and if something is falling into your lap, whether it be good or bad, it's meant to be. And this is meant to be. 

So goodbye Rhode Island and your gorgeous beaches, and HEEEEEELLLOOOOOOOO Virginia -- with your hot summers and fantastic everything else! =D 

Scrap Crap

I am addicted to scrap-booking. I knew I enjoyed scrapping in high school but now I'm addicted.  I just don't have anything to scrap about lol. but I found i guess blog candy? It's sweet. Awesome people give you a chance to win some scrapping stash. Like this blog. 

oh, thats about it, besides the fact I feel terrible today. 

Sunday, April 5, 2009

A case of the Blahs

So do you ever have those days? Where you are just blah, and everything seems so blah? That, my  friends was today. Today was absolutely beautiful outside, but I just couldn't being myself to do much of anything. I was just so blah. 

I did get gas today, in cumberland picking up pepper spray. (don't ask). While doing these tasks I got hit on, a lot. Which is sometimes flattering, but today it was just odd. When walking into ACE hardware I got hit on by the counter-boys. No biggie- that was expected, a silly girl going into a hardware store for mace, what can you expect? But then I was pumping my gas, minding my own business, when a group of boys on their motorcycles decided they needed to get gas too... right next to me. And they also decided they needed to chat me up. Thanks. I was polite, got my gas, went inside to buy a drink, came out, about to get into my car and "Excuse me..." *sigh here we go again* . A car of boys this time, pull up asking for directions. Clearly they know where they are and where they're going but they were actually cute so i decide to play along, HOWEVER when playing along, I immediately say "take a right, (and it's a left) and it will be on your left (WRONG it will be on your right) hahaha Sooooo I realized that, laughed and corrected myself feeling stupid. Sigh. You're not supposed to feel stupid when being hit on, you're supposed to have higher self esteem not lower. Gosh what is wrong with today; it is just a blah day. 

I had ambitions for tonight, but tonight has been blah. And I haven't done a thing. Oh yea, it's definitely a case of the blahs. Well, hopefully tomorrow will be a better day. 

Friday, April 3, 2009


I had clinic today. I went because I hadn't been feeling well, and was convinced I needed a tune-up. Turns out I only needed a little antibiotic to kick whatever was growing out of my lungs, and I feel fantastic. In fact my lung function went up all the way to 77! I don't think I've seen 77 since middle school, or the very beginning of high school. Actually in sophomore year I went up to 83. So that's my goal. 83, or better of course. =D Go me. 

Wednesday, April 1, 2009

Virginia is hot.

Well my title post is so true. In the summertime Virginia is H.O.T. Temperatures can reach well into th 100's and it's always humid. Gross. BUT, Virginia, is where I'll be living for the next two years. And I couldn't be more excited than I am right now. And Guess who I'm living with? That's right, my one-day-future-fiancee. We were able to snatch a 2 bedroom apartment for only 699 a month. Crazy right? 

No, that's nothing, what's crazy is that I'm moving in 4 weeks. Count 'em: 1, 2, 3, ...4 weeks! And then I'll be down for 2 weeks until kyle gets out of school, then we'll drive back up to RI and get his stuff the rest of my stuff and I thinkn I will have to just drive back down, becuase I unlike the bum, will need to work in order to pay my half the rent. His parents are paying for his b/c it's cheaper than on-campus housing. But when I get down to Williamsburg, I will be able to set up an interview with a nanny agency and hopefully soon have a job. Go me. Or I'll shoot for being a waitress. I could get good tips.

But for this last month, I just need to survive going to Gen's house, packing, doing school work, and of course dealing with family, and squeezing in last minute visits with everyone. And getting rid of all my crap via craigslist. I should do that tomorrow. But it is tomorrow!! Oh man, It's past 5 and I really should get some sleep. Well that's the exciting news, and that's about it.

Tuesday, March 31, 2009


Bi-who? Bi-shwat? Bi-polar, ah, yes, good old manic-depressive disorder. Well, being 20 I am officially crazy, as if CF didn't give me enough problems already, tack this one on too. haha. Oh well, at least I can laugh about it now. (now that I'm on meds) I didn't think that these meds would make me feel much different, maybe less sad, but MAN! This was probably the best thing to happen to me in a long time--being diagnosed that is.

Everything in my life since HIGH SCHOOL, yes highschoolall makes sense now. All my instant mood swings/ silent aggression, hyperness, wanting to do a million things, to thoughts of death all the freakin' time. Yup all makes sense. I am so glad I finally decided to see someone about my 'depression' because if not, I would have been stuck in this rapid cycle of up and down, bad and great. I was never "normal" I never seemed to have the ability to get things done regularly. When you're manic you feel like you can do 1,000 things at once and starting one thing usually means never finishing it. This also applies to meds. You feel great, so who needs to do meds? Surely not you, miss manic?

But flip it around and it's the same way. When you're in your depression stage you don't feel like doing anything, including taking care of yourself. I've been on the *hopefully* correct dosage of my new med for about a week and I haven't felt this good since before middle school. I finally feel satisfied with where I am in life. I don't feel stressed about the future, my anxiety has gone down, I don't feel overwhelmed and upset at everything. I definitely have calmed my instant anger and aggression down. ALSO I am able to tackle everyday tasks without feeling like they are a hassle, and I can actually finish them. In fact, I did 3 tasks in my 3rd class in ONE DAY! Usually tasks take me a few days - a week to finish. BUT with my meds I am able to buckle down and work. It is amazing.

So although yes i think why do I friggin have to be bi-polar, it is probably one of the best things happening to me right now. If I can learn to control my mania and my depression with the help of some medication, I could really go far. It's been a week, and last week I was calling Clinic begging to go into the hospital, and tonight, right now, I feel like I could run a marathon.

I have been religious with my medications, drinking more fluids, eating better, sleeping through the night (big one here!!) and just overall stepping up. It's so much easier to love yourself and care for yourself when you're mentally sound.

Sunday, February 15, 2009

Valentines Day Love

I drove 9 and a half hours to be with the love of my life for Valentines day. From Rhode Island to Virginia. And I am an anxious driver soooo Driving 9 and a half hours is a big deal for me. I only stopped twice! And not to mention the 20 something dollars in tolls! Outrageous.

But I suppose it was worth it, although right now we've been in the library since noon and it's now 6 oclock. I don't know how he does this. He works so hard, and I can't help but feel selfish and want to cuddle and leave this stupid library. But I'm sitting here blogging, pretending that i'm actually trying to do some work.

It was so nice the first day I was here. About 65 degress and sooo sunny. Sunshine all around. But then it got cold. =\ chilly, but not frigid as it is in RI. It's still nice to be here though. Meet his friends, etc. I know he appreciates my visit. I cannot wait till I'm down here full time wiht him. That's my task for tomorrow. Call appartment places. =\ hmmmm Idk how to do that at all. lol

oh well we'll see how it goes.
That's all for now.

Sunday, February 1, 2009

Hmm... Forever until Divorce?

Looks like we all make mistakes, expensive, big mistakes (hey I've been there and my expensive mistake is sitting in my garage, needing an oil change) but we all make 'em. Looks like my big sis made hers. Like she didn't have enough on her plate. How unfair that now, on top of it all, she must deal with a good-for-nothin' stupid head like Ben. Ugh. Talk about frustration!

The puppy is staying with me starting tomorrow though, so hopefully i'll update with that...


P.S. That's another thing I forgot to mention about 2009. I want to start blogging more. Once a week is my goal, and then hopefully more often. =D No one reads it but its nice to know that there is always a possibility of someone reading it. Right???

Ring in the New Year.

Hello 2009.

Two thousand and eight was a rough one. Working backwards,I caught MRSA from the last hospital stay, which was mentally tough as well as physically tough; my body just didn't want to seem to fight it off. I became extremely depressed beginning of fall semester =\ which didn't aid my health any. I missed Kyle, I was trying to cope with many, hard, life-awakening thoughts/decisions about my future. [Thank god for therapy now... yay!] I fell behind in school work, the whole deal. Missed all of october because I was in the hospital. Just not a good time.

Summer sucked because I was underpaid, I always overwork. Spring was tough because I felt so alone without friends. Kyle had gone back to school so I didn't even have the comfort of having him around.

Looking back there are things I wish I did differently, and things I am proud of. I am proud that I was able to improve my lung function 15% over the summer, and get it out of the 50's. I am happy that I had so many fun times with kyle and that I stayed active. I am grateful that I learned all my hard life lessons early.

I look where I am now, a month into the new year, and I am proud to see how far I've come. What I have accomplished. A year is a long time, and you can achieve a lot if you put your mind to it. I grew up a lot last year and I believe that was the best thing that happened to me. I matured, and finally accepted it and grew up. Granted, I still have a LOT of growing up still to do, but I'm more willing to try.

2009 holds many expectations and high hopes for me!!! By the end of '09 I hope to accomplish most, if not all of the following:
Finish up my first year at WGU. Becoming that much closer to an elementary school teacher.
Moved to Virginia, switching clinics, doctors, etc. [this step is scary!!! but oh so exciting]
Improve my mental state
Start being more physically active
Love my boyfriend every single day and tell him how great he is.

haha , the last one seems cheesy but its true. I really want to show him that I am in it for the long haul, that I'm working to be together too. I can hold my own. Showing him that I care enough about our future to do what's best, not necessarily what I want to do (because who wants to do meds when you could sleep?) but rather what i need to do.

So here's to a new year. Let it be a great one.