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!!!!

Crappy day thus far

and its only 6:30 am!!!!!!!

It can only get better though right????

Maggie woke me up 4 times last night!!!!  And she hasn't stopped whining!!!  She ate, she went out and pooped and peed.  I can't freaking figure it out!!!!  She is laying on my lap whining...curled up nonetheless.  I am gonna kill her!

I go to do my nebs this morning and the dam thing isn't pushing air out.  I change the filter...nothing.  I change the tubing nothing....I change the neb cup and voila!  Bad neb cup!!!  Must be worn out.  All mine are drying so I am using an older one with no mouthpiece and my mouth hurts now.

And I have a headache...again.

Ok thats it.  My bitchfest for the morning haha!!!!!!!!!!

Repeat of Friday...WTF?

Yep just as the title says, today was a repeat of friday.  I did my TOBI this morning and lo and behold I sat on the floor at the twins birthday party because it was the most comfortable for me and I was able to stretch my body out a bit to let more air in.  

Fuck it I am DONE with TOBI!  Let my lungs turn to total shit I don't care.  It can't be any worse than it feels now.  Ok I lie I am sure it can feel worse but God almighty at least I won't be doing it to myself.  

I will call my clinic tomorrow and tell them I am done with it and we need to find a better way to combat PA.  I can't deal with it anymore.

<3

TOBI, TOBI, TOBI...ew!!

Today I started TOBI again.  So this blog will be me bitching about it endlessly.  

I usually start it at night so that I don’t sleep the first night at all.  It has been working for me for the past year.  Well last night I didn’t have any dry neb cups so I didn’t start it.  So I did it this morning.  BIG mistake!!!!  I have been horrible all freaking day.  So bad I almost went home to sit on my bed hooked up to my O2.  But I survived the day.  Not with out some serious pain though!  Ok yeah I know it pales in comparison to some people but hey it fucking hurts like hell for me!  

Right now it STILL feels like there is a 400lb man sitting on my chest and my back is arched trying to hold him up.  All your muscles in your back, shoulders and arms hurt like hell from trying your damdest to breathe normally.  My head is throbbing from coughing, but not hard since if I do it feels like my back is breaking and my lungs are going to pop right out.  Though I don’t think I would mind that haha!  I have my O2 on now but it doesn’t help the pain.  It only helps keep my HR low.  Tylenol, Motrin, Excedrin…none of them help with the pain.  Its an internal ache, a pain that does not go away with meds, only time.  How I long for my time to be here so I can rest peacefully.  

I will skip my treatment tonight and tomorrow.  Then when I start again on Sunday I SHOULD be back to normal or at least be able to function on a semi-normal basis.  

I also made the mistake of going to lunch with some friends from work.  It was the most torture I have thrown upon myself in a while.  I couldn’t even talk the entire time.  Luckily my cube-mate knew my issue and didn’t say anything.  So she kept the other friend occupied haha.  I tried to eat my sandwich when we got back but I couldn’t.  I did eventually eat it but it took a while.  At one point I put mu pulse-ox on my finger and should my mate and it was reading 89 and 130-something.  She was like holy shit!  So she put it on her finger and it read 98 and 74 haha!  She got to see first hand just what sucks about CF.  Ok well not all of it but a portion! 

So I decided that I would document what my numbers were when I left my desk and when I got to my jeep.  Below you will see what happened.  Yes the 89% was when I started and the 86% was when I took the next picture.  It did hit 85% but it went back up before I could get the picture to take.  And people ask why I can’t just deal with it when it helps me battle infections?  Fuck that!!!!  I think it has lost its efficacy on me anyway. 

Needless to say I highly doubt I will be hitting the gym tomorrow morning.  Most likely I will be sleeping until I have to get out of bed at 2 to get ready for my Christmas party for work

Ok I am done bitching.  I had much more planned out earlier today when I was driving home from work but dummy me didn’t sit down and blog right away.  I did a treatment and ate. Phooey!!!  <3

Not a whole lot to update on...

I have a whole lot packed into one tiny blog! 

First off….today was a bit of a disappointment.  Well actually yesterday was.  Tomorrow is the deadline to apply to take the NCIDQ exam in April.  I started the application process the week of Thanksgiving because I didn’t realize the deadline was so close.  So it is partly my fault.  OK OK I will take full blame!  Anywho…I needed to have all of my official transcripts, 3 letters of reference and all past employers signatures stating what I did and how many hours I worked.  The ones I was unsure of getting back in time I received almost immediately.  Fabulous!!!  Then of course as of today I am missing my last 2 transcripts.  So I can’t have them mailed out and in the hands of the NCIDQ people by tomorrow at 5pm.  

The good news is now I have an extra 6 months to study.  Bad news is I have an extra 6 months to study.  I get going on things and when my momentum gets interrupted I am screwed.  So hopefully I can keep up the super-excited-can’t-wait-to-be-registered mode I am in now. 

Second thingy…I found a way to help with my antsy-ness.  Thanks to my bestest buddy Rhi!!!!!  I emailed someone at the Historical Society of Pennsylvania about volunteering on Wednesdays.  I think it will be a boatload of fun and I can’t wait!!  I love history and I feel like I need something to make me more whole so hopefully this will do the trick. 

Here is a picture of my pulse-ox after getting into bed.  I swear its all I did!!!!

December 7th, 1941

To all you history people out there (or I should say just Americans since you have to know what today is) let us take a minute to stop to remember those who fought for us in WWII and every other war our country has been in.  

Today is the anniversary of the bombing of Pearl Harbor on December 7th 1941.  67 years ago we lost thousands of lives when we were attacked by the Japanese.

Thanks!

Boston...

I went to Boston this weekend to see my man.  It was great seeing him.  Being nauseous and miserable, that was NOT fun!  Not a clue why I was like that.  I felt fine on the ride up and when I got in at 1:30am.  Woke up to take him to his class and again felt fine.  By 9:30am I was nauseous and looking for a place to go so I could sleep (we had checked out of the room already).  I was assuming it was because I slept horribly since I didn’t have my O2 with me.  I slept for about 2 hours and then went and picked him up.  My stomach felt a little better but I was still afraid to move my head too fast.  We drove into Boston and checked into the hotel room.  BEAUTIFUL room!!!  I took some pictures hehe! 

Well we met his co-worker for lunch and then I came back up to the room to lay down.  I was hoping to get some more sleep.  Didn’t happen.  I laid there for the whole afternoon, nauseous, with no sleep.  We ended up just staying in bed all night, which was fine by me.  But I felt horrible since I was so sick to my stomach.  It did feel better by the end of the night which I was happy about.  I was able to sleep well.  This morning I felt great too, I slept well, no nausea, happy.  We packed, showered, nebbed and then left to go downstairs to eat breakfast.  I swear the minute he shut that door my stomach almost came through my mouth.  It hit me like a freaking brick wall.  Took all my effort to not barf right there.  We went down to breakfast and I stared at my potatoes.  At least I was smart enough to not order a big breakfast.  I drank some of my milk hoping it would coat my stomach.  I even went to the bathroom in hopes that I would throw up.  Nope.  We went back to the room so he could finish packing and I laid down.  I was feeling kind of better.  We said our goodbyes and headed our separate ways. 

I made it home with no incidents.  I was munching on pretzels so hopefully that helped settle my stomach.  I did have to pull over and sleep for a while because at one point I was falling asleep at the wheel.  It was scary!!  And of course it was right where there were NO rest stops!  I did find one eventually and slept for an hour and a half.  Woke up still exhausted but my stomach was pretty good.  And here I sit still kinda iffy but no where near where I was this morning!  And I am still super tired.  

I was so mad about this all though.  I had planned to meet up with Jenn and Tina.  Tina and I were going to do dinner and then I was going to go to Jenn’s for a candle party.  Well thankfully Shawn’s doctors didn’t want Tina meeting me so I didn’t feel bad about canceling on her.  But I was so bummed to cancel on Jenn.  I wanted to meet both these women so bad!  Plus I was dying to hear all about Shawn’s transplant from Tina!  It just sucks because instead of enjoying my 36 hours up in Boston I spent the entire time trying not to loose my meal.  I wanted to see some museums and visit historical places.  Nope I got to do none of that!  So now I will just have to go up there again sometime so I can…maybe!  

I am also going to look into a portable O2 concentrator that I can buy on my own.  Insurance won’t pay for a portable one and my big one is way too large to take places with me.   

But on to some fabulous news!!!  I called my Dr on Friday to find out if I could do the study for inhaled Cipro.  I left a message with the NP and told her to call me back.  Well about 15 minutes later my phone rings and it is the director of the CF program for clinical studies at Penn.  She was super excited to hear that I was interested in doing the study.  She told me it would start in about 2 weeks and that she would talk to Dr H and the NP and see which study I would be best suited for – Azli or Cipro – since they are conducting both.  She told me I was her first interested candidate!!!  It felt great to hear that!!!  Now I just have to wait for the Dr’s ok and then I will be in the study!

CF blog award :)

Well I was tagged and awarded this honor by Piper !!!!  She was nominated by Heidi who was nominated by Christy....

I am so happy she chose me and 4 other bloggers (2 of which I am going to repeat haha!).  

here are the rules:

1. post the award on your blog

2. link me for giving it to you

3. link the originating post nominating you

4. pass the award on to 5 more people

5. post the rules

LISA: She has always offered me great support and advice.  Plus hearing her side of life as that of a CFer's wife is great!  (oh snap I rhymed!).  Her hubby is lucky to have her!

TINA: She has stood by her hubby as he declined, was listed and now is post-tx!  An amazing wife!

BREE:  she makes me laugh with her truthful stories that describe every annoyance and piece of life to the T!  Come on new lungs for Bree!!!

RHI: cause well she is Rhi!!!!  LOL we are very similar and reading her posts are like reading my own!

PIPER: same reasons as Rhi!!!!!  We share similar cystic feelings :)

Where shall I go from here?

I have that antsy feeling.  Discontent, out of sorts, restless, anxious, edgy.  All the same things I felt when I was deciding whether or not to move to Arizona back in 2002 (before the EX and I got back together).  I feel like I need change; like everything is not in place right now.  Something needs to happen be it with me, my job, or my friends.  I don’t know…I just know I need something.  

Perhaps it is my feeling of uncertainty with my job.  The housing market blows right now which everyone is aware of and it has hit us here at work.  We have laid a few people off in the past few months and we are still short on work.  I get nervous that I might be next.  I work hard, I show up all the time, but I still don’t feel safe and secure.  I used to, before I got sick and before I changed my work schedule.  Now I feel like a slacker even though I am still working 40 hours a week.  I hate feeling like this.  

I hate needing to change my life.  It makes me nervous to ever settle down with someone.  Will I need change after a few years with that person or will I change with him?  That type of thing.  Beats me.  I just know that today at work I felt something stir in me…the stir that happened many moons ago and brought me to where I am now.  It took me a VERY long time (ok just a year but still) to act on that movement in me; will it take me that long yet again?  Or should I ignore it until the urge is too great and I do something drastic like move to Europe?  HA!  Kidding I could never do that, no matter how tempting it may seem.  But waiting that long made me jump into something I was not ready for.  I don’t want to do that again, nor do I want to sit around and wait for something to happen. 

If you are confused by this mess just imagine how I feel haha!  I can’t sort out everything in my head and this random blog hasn’t done anything either except voice it to the 7 people that read it.  

Perhaps tomorrow I will wake up with more direction in my life or maybe I will be just as confused…who knows…