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.

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.

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,

Beth

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,

Beth

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!

Sincerely,
Your 'not sick enough' cystic fibrosis applicant.

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. 

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?