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 14^th 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 Harrisburg.  AND I AM GOING!!!!  They rented a bus and I was able to get on it so I can see him get sworn into office.  I just have to change my dermatologist appointment from Wednesday since I will have to work that day instead.  Not a big deal, its only my skin and how often I will I get to see a friend be a member of Congress???? 

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 never see my friends anymore and going out has become a once in 3 months thing.  I don’t want to be a party animal again but I would like to keep in contact with my friends so they know I still exist. 

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 US government.  I need to start saving.  My 401k is not that great and when I stop working I will be relying on that to pay off things that I can’t keep paying while not working.  That was a mouthful.  I did start this by setting up LOTS of automatic payments with my online banking.  So that should keep me in line.  I don’t spend money on things I don’t need I spend too much trying to pay things off then end up having to put basics on the credit card like food and gas when I run out of money.  Beats the purpose of it haha! 

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.  :)

Courier Times Article

While some of the info is not 100% accurate, they did good.  It's fun seeing articles about CFers near me :)

CF article

Infection

Well I knew something was brewing down there and now I am running low grade fevers.  Just above 99.  But I am usually 97 so for me it is a fever.  I am going to watch it the next few days and see how it plays out.  I go to my DR on the 14th so hopefully I can hold out until then...I KNEW IT.

And of course I have been researching colon cancer since it is genetic in my family and I am showing some symptoms (bleeding and change in bowel movements - MONTHS now).  So my family has HNPCC...fun times!  It is genetic, my dad's family has had 3 generations in a row with it.  It it not a matter of IF I will get it but WHEN.

Yes I will be adding this to the list of things to talk to my doctor about.  But like Q and I joked - If I ignore it then it will go away :)

colon cancer

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 MONTHS!  The last time I went out with my friends was for my birthday back in OCTOBER!!!!!!!!!!!!!!!!!!  I have energy for the first time in a long time. 

However, the thought of being out of work completely terrifies me.  Reading can only sustain the soul for so long before boredom starts to set in.  Though as I write this I have 6 new books patiently waiting to be read beside me.  Each one silently exclaiming that they should be first.  Soon my precious soon. 

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 months until it creeps into my head again.  Working up until the day I get the transplant call is what I always so but do I REALLY have the strength to do that?

Marriage Rant

I am opening this blog saying I don’t want to hear anything like “oh maybe someday” or “well you never know”.  This is purely an opinion of me, the blog owner, and remember I hold the complete rights to delete any comments left that I dislike.  HAHA you know I will never delete them unless they are totally mean!!!!  But seriously, please don’t leave any comments trying to lift my spirits because I never said they were down in this blog.  This is not a Debbie Downer blog, it is a matter of fact blog, so remember that going in, k? 

Did you ever just KNOW something?  For me I always knew I would never have kids.  Not because of the CF but I just never saw it with me.  For as long as I can remember I wanted babies.  I always wanted to be a mom and a wife and do all t he things that mom’s and wives do.  But for as long as I can remember I never saw me that way.  Not sure if that makes sense.  As much as I dreamed of having kids I just always thought it was a distant fantasy, that would never come true.  Now I know that I was right.  I will never have babies.  My health is too crappy and if I do decide to have a transplant I won’t have them after either.  But I am fine with that.  I am ok with it I think because of knowing I really never would.  I had no idea having babies was frowned upon with CFers until recently so its not like that was playing in my head.  I just never saw ME as a mom.  Weird yes I know! 

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 never get married if I keep breaking up with people.  All I want to say is that I won’t marry anyone I am not head over heels in love with so that’s why I break up with everyone.  Nuff said in my opinion.  Why settle?  Why just get married to be married.  And why do I HAVE to get married?  All this hype and build up to spend forever with someone.  It’s quite frightening to me!  What if I change my mind 5 years from now?  Then I have to go through the process of a divorce!  EEKK!!!!!  

Being married, having a hubby and a family seems all hunkie-dorie but it just doesn’t seem like ME.  

MERRY CHRISTMAS

Merry Christmas to all and to all a good night!!!

hope everyone has a fun and safe holiday!  Eats lots and party hearty! :)

<3

Lemon award

Thank you Carrie for nominating me!!!!

Here are the rules of getting the award....  put the logo on your blog, nominate at least 10 blogs that show great attitude and/or gratitude, link to your nominees, let them know they have received the award by commenting on their blog, and share the love and link to the person from whom you received your reward. 

Cindy

Tina

Jess

Aspen

Rhi

Piper

Shannon

Bree

Christy

Lisa

Ok so I am not going to the blogs and telling them they will have to see it from here :)  But I know each of you read my blog so you will see ;)

<3

Well I decided to blog about it

I wasn't going to but hey this is my blog and I can be as depressing as I want right?

So beware...this blog will contain rants and such that may not be taken lightly by some.  Fortunately this blog is not stained with tears as so many prior have been.  I guess I am out of tears.  I used up my yearly quota months ago.  Perhaps that is a good thing.

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.

Study update and some other crap

I heard from the study coordinator today.  Seems I am a decent candidate for the study however, I am on 4 abx daily and that is an issue.  We might have to stop some of them.  My appointment with my Dr is on January 14^th so she is going to meet with me that day too.  She also said she will be sure to talk to  my Dr before then.  She hasn’t had time to catch him with the holiday and all lately.  

I am all excited to do the study but I am not sure if I will.  If I have to stop all 4 abx I am out.  I am too scared to do that.  I can deal with stopping Keflex and oral Cipro but I want to stay on my Bactrim and Zithro.  I have already decided on my own to stop TOBI so that will not be an issue.  Of course Dr H doesn’t know that yet but haha!!! 

It especially worries me since I only feel about 95% of my normal self.  I feel a little more tight and all but I can’t figure out if it is still the after effects of the TOBI or if it is an exacerbation brewing inside.  I am holding off on calling since I don’t have any extra sputum and the color is the same.  

I also made an appointment today to go see the dermatologist on the 7^th.  My face is outta control!  The pimples are multiplying daily and they don’t have heads so I can’t pop them!!  Just annoying painful pimples.  So I am hoping she will be able to give me some miracle cream that will make my face look like a models again! 

I was also going to blog about my wonderful mood **inserts sarcasm here** but I don’t feel like bringing the world down too.  So for now I will leave you all with my Dr appointment / study updates and say have a fabulous evening!!

Mouthpieceless Neb cup

See how it works now?????

Any way....I think I realized why Maggie keeps whining.  Must be mating season she wants to hump my leg!!!!