This 30-something's journey with Cystic Fibrosis, Lynch Syndrome, CFRD and the Lung Transplant process
Sunday, January 4, 2009
Friday, January 2, 2009
New Year's



New Year’s Eve was a lot of fun!!!! I had a great time at both house parties I went to. And I managed to stay sober so I could drive home and sleep in my own bed. Mainly because I had to get up so I could make it to LBI (
Which I was wrong about in my previous post. It hasn’t been lit since 1932. It was built in January 1859 so it was the 150th anniversary of the building of it. It was FREEZING!!! As you will see by the pictures we were all bundled up. My batteries in my camera wouldn’t even work right! At least that is what some guy told me when we were leaving. I managed to get a few pictures before it just died on me. We had to walk a few blocks to get to the park. Seems everyone in NJ was there to see the lighting!! And LBI is a small island so God only knows how it was holding all those people hehe…well it does during the summer but winter it is like a ghost town. My Aunt lives down there so we were able to warm up at her house.
So back to new years. I did not get my new years kiss, though there really wasn’t anyone there that I wanted to kiss. And the one person I would have kissed was not able to get out that night. He was on baby duty. Oh well!!!! I still had a fabulous time and stayed out until 3:30am! SO LATE for me! Even my BFF commented that she couldn’t believe I was still there.
Wednesday, December 31, 2008
NEW YEAR'S EVE
Well here it is NEW YEAR’S EVE!!!!!!! Yay!! Time for a new year woot!!!! This one wasn’t as bad as I had thought it would be. I was only hospitalized once! Though who knows what the appointment on the 14th will bring hehe.
I have lots going on tonight. 2 parties to go to, which I will be taking and posting pictures of. And then Tuesday, I am so super excited about this, my friend Frank Farry was elected to the House of Representatives and Tuesday is the inauguration ceremony in
In honor of New Year’s I did a resolution list:
They are in no particular order, just how they came to me.
1. Have more of a social life. I
2. WORK OUT. I haven’t been to the gym in forever. Mostly because of my lack of energy which I also need to work on.
3. Get my energy back. Not sure how I can do this but I have a year to figure it out.
4. Read more. I tend to get sucked into the internet just like everyone else but I need to stop. I need to read more. I love to read and I love to get lost in stories.
5. Write more. This doesn’t necessarily mean blog more. Just write more. I have my short story written but it could use some tweaking before I attempt to send it to a publisher.
6. Work on that pesky thing called health. I know my numbers suck and I know I need to work on them. Exercising will help that. So will a better mood. Once I nail those down hopefully my numbers will improve. I’m not asking for much, just 45%.
7. Figure out my finances and get them in order. I need to be realistic about my spending…I don’t buy anything except food and gas. All I do is pay bills…thanks student loans and the
8. Be a better person. I am not happy with who I am and I need to work on that.
9. Cross more things off of my 101 things to do in 1001 days list.
Well that’s all I could think of for now. I am sure as the days go by in the next week or so I will think of some more things.
Hope everyone has a safe and fun new year’s. Don’t do anything I wouldn’t do!!!!!!!!!
EDITED to add:
I forgot tomorrow I am going to LBI to watch the lighting of the lighthouse. It hasn't been lit in over 400 years or some high number like that. :)
Tuesday, December 30, 2008
Courier Times Article
Sunday, December 28, 2008
Infection
Late night working ramblings
I couldn’t sleep so I decided to blog. It’s the new thing to do I hear! Anyway…I was laying in bed thinking about how un-stressed I have been the last few days and thinking about why. Well the answer is I haven’t worked since Tuesday! It doesn’t seem like long I know but for me it has been a vacation. I have slept until I wanted to get up, I have lounged around the house reading, I have gotten things done at a leisurely pace. I even went out Friday night!!!! OMG that is a first for me in
However, the thought of being out of work completely terrifies me.
Sorry I digress…So I was laying in bed and thinking about what it would take for me to quit working. I love my job, I love the people I work with and I would miss them terribly, but I miss having energy too. I’m torn. I CAN work. That is what gets me. But is it healthy for me to work? That is the question I need to ask myself. Can I survive one winter without being hospitalized while working? Right now I don’t think I can. I have high doubts that I will make it through this winter without a PICC and some IV meds to hold off that every brewing infection.
I think I just get worried that if I go out on SSDI I will have failed, that I will have let CF win. I know eventually it will win, but right now I still feel like I have a little bit of an advantage on it. Seriously VERY little, like 51-49. But it is there. Not working admits that I can’t work. Or that I am too lazy to work. I am afraid that people will view it that way. I know who the hell cares what others think but as much as I say that it doesn’t well it does.
And besides what the heck would I do with all my stuff? I would not be able to afford to pay for my jeep and insurance and rent and all that. I would be forced to move in with my mom which would mean a move long before I was intending too. Of course if I went out on LTD (long term disability) then I would be making more than SSDI. See its so hard to figure this all out. Do I do LTD for a year and see how I fair and if the results are good then stop work and apply for SSDI? Or do I just hold off a little longer, try to build up some savings (LMAO I don’t make nearly enough to do that, or save anything that would be of any use to me), and wait until my doctor says I NEED to stop working?
Everyone reading this knows what I will do. I will add this to the barrage of blogs I have on the subject and let it go for a few more weeks or
Friday, December 26, 2008
Marriage Rant
I am opening this blog saying I don’t want to hear anything like “oh maybe someday” or “well you
Did you ever just KNOW something? For me I always knew I would
But that is meant to build up to my next insight. I don’t think I am meant to marry. Again, I always wanted to be a wife and do the domestic thing. But I just don’t see ME as a wife. I don’t see my settling down and being all wifey. My friend D and I chatted about this a few years ago and I said I just didn’t see how I fit the mold of a wife. She said I didn’t fit the mold of a traditional wife but she thought I would make a good one. Yes I think I would make a good one too but I just don’t see me in those shoes. It’s hard to explain what I mean. Yes I would like to get married and yes I wanna find the man of my dreams and marry him and be super happy but I know my happiness doesn’t depend on a man and especially not on the man of my dreams. I am happy now. (My mood has risen since the holidays are just about over and I now have New Year’s plans).
All that to say that I get annoyed when people ask me when I am gonna get married or scoff at me when I say, yet again, that my boyfriend and I broke up. I don’t wanna hear it. I don’t want people telling me that I will
Being married, having a hubby and a family seems all hunkie-dorie but it just doesn’t seem like ME.
Wednesday, December 24, 2008
MERRY CHRISTMAS
Saturday, December 20, 2008
Lemon award

Well I decided to blog about it
I just don’t know what the hell is wrong with me anymore. I am so bummed out and not myself lately. I know I get all crabby and moody around the holidays but I don’t remember it being this bad. I am just plain ole grumpy. And I don’t want to be. I am going to see about switching my anti-depressant or upping the dosage. Hopefully that will help me some.
I miss being the carefree woman I am. I miss wanting to dance around and sing and shout in my car when a fabulous song comes on the radio. I don’t even recognize myself anymore. I am not me. I do absolutely NOTHING with my life except work and sleep. And the days I have off from work all I want to do is sleep. WTF? I have zero energy and zero desire to do anything. I used to be a social person. I used to visit with friends and family whenever I had the chance. Now I dread when people call because I will have to make up an excuse to not come out. What the hell happened to me? Who the fuck am I?
My cube-buddy at work, T, and I are very much alike. Well we used to be very much alike. She is who I used to be and want to be again. I look at her and talk to her and she is me. But I am not her. I am someone else. I have changed into someone I don’t like and don’t now how to get rid of.
I like sitting in my little bedroom doing nothing but screwing around on the computer or reading. That’s it. I will socialize with my internet friends and chat and talk like nothing is wrong but the whole time I feel like I am wearing a mask. Like I am putting on a show for everyone. Trying to be that person that I am supposed to be. The person that I once was.
I have my moments of happiness, don’t get me wrong. I can be happy at work, actually I usually am. T and I have a lot of fun. We get our work done but we have fun doing it. Like I said before we are very much alike. That is one of the few times I feel like I can see myself again. But once I leave work or on the weekends I can’t find that person. She is sleeping, hiding, gone. Sometimes she will surface when I am with my nephew or my friends’ kiddies. But that is short lived since my energy is short lived as well.
I wonder if my depression is deepening, but I don’t cry and I don’t feel like I did when I hit rock bottom last year. I just feel blah. Like life is advancing, people are living and I am just here. I don’t feel like I am living at all. I feel like I am surviving, trying to make it through each day without lung pain, SOB, and coughing fits that render me exhausted. I am not even in need of a tune up. Maybe just a mental tune up perhaps. I don’t know.
I have no idea if this blog is even making any sense, or if everyone now thinks I am a total whack job. I really don’t care. My mind is a disaster, my heart desolate, my body exhausted.