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…

101 things...what I have done

Well I am totally bored with this 4 day weekend and I don’t want to do my holiday cards while nebbing so….I decided to write about the things on my list that I have finished thus far.  I have a mighty good amount done for only having begun this on my birthday. 

#6 – Get computer working again so it reads CDs.  This one was pretty easy.  I only needed a new cd drive which I installed myself.  Thanks to Kevin, I didn’t have to call anyone to get it set up for me and try to figure this all out. 

#9 – Write a short story.  I had begun writing a story when I was in school and I took a few extra days to finish it and make some changes.  It is not entirely done and not ready to be sent to anyone yet, but it is done, it just needs tweaking. 

#13 – Get a sleep study done for O2.  This one I kind of bypassed.  My dr put me on O2 at night after I told him my issues I was having.  It worked!!! 

#20 – Donate all my old books to the library.  This one was a help to me too!  When I was packing to move I just put the books I didn’t want into a different box.  Julie, my old roommate took them to the library by her work.  She had some old books she wanted to take too. 

#21 – Get all my pants hemmed.  I am short, this is a known fact.  And short people have a hard time buying pants that fit.  Even with my 3 inch heels I was still walking on my pant legs.  I finally gave in and dropped them off at the cleaners.  A week and $80 later I now have pants for work that actually fit me!!! 

#29 – Delete old files off my computer.  This one only got done because I was without the internet for 3 weeks!!  I deleted all my old files and programs that I never use.  I have a lot more space now!! 

#35 – Go to Disney World.  Well I kind of cheated on this one haha!  I wrote it in knowing I was going to go.  Hehe, shhhh don’t tell!! 

#39 – Back up all my blogs.  Did it!  Took a while to get them all copied but it is done!  And now I write my blog in the file and then copy it to my blogspot.  See worked well!!! 

#82 – Actually go Christmas shopping on Black Friday.  Yes I braved the stores and went shopping on Friday.  I was going to go at 5am, but I was still too tired.  Now I am glad I didn’t since I heard of a few deaths caused by trampling!!!  OMG WTF?!?!  I almost had #83 (finish shopping before December 1^st) but I have a few more people to get and I know that won’t happen tomorrow.  Next Year!!!! 

#90 – Start birth control.  I’m on the 5 year plan, Mirena.  I love it so far.  Well maybe  not.  But the first 3 months you can experience in between bleeding.  So once that is over then I will love it!!  No babies for me!!!

The CF chest...

No not boobs all you pervs!  I am talking about the CF chest cavity.  We all know what I mean.  That expanded, barrel chest look we have.  The one that makes us self conscious about our appearance.  Well it makes me self conscious.  

I decided to write about this today because I had to buy more bras yet again.  My chest keeps expanding and it won’t stop.  I feel I will topple over soon if it doesn’t!!  As I sit writing this I am constantly pushing my shoulders back to expand my bra hoping it will stretch it out.  But unfortunately it doesn’t.  It continues to dig into the side of my chest. 

Last week, I had to go shopping for a dress for my reunion (which I didn’t end up wearing anyway).  I went to 3 different stores looking for a dress that fit and that I liked.  I was trying on 8s and 10s!  And they were still too small up top!!  The bottom would look big and baggy and yet the top wouldn’t close.  I hated it!  I was fed up and frustrated.  I’m a petite person I am not supposed to have trouble fitting into clothes or finding ones that zipper.  Though in recent years I have found the bloated stomach and barrel chest are much more pronounced and I am resorting back to my pre-dx days of skinning arms and legs and bloated body.  IT BLOWS!!!  

A few weeks ago I found my prom dress again.  It is so pretty I love it.  I would love to donate it but I don’t think it would fit anyone but me (or another CF girl).  It was altered A LOT so I could fit into it.  The dress is a 10, but the stomach area was taken in to a 4 so I could wear it.  But that was the only size that would allow me to zip up!  And that my friends was 10 years ago!!!  And probably about 30% lung function (I was in the 60s-70% in high school).   Of course now I would love to try it on but I know I will be sad when it won’t zip.  And not that I put on 15 pounds since high school but because my chest has expanded SO much.  

It’s little things like this that irk me the most about CF.  Not only can I not breathe normally, digest food normally, but now I can’t even buy clothes normally!  I feel weird in tight shirts because I look fat, up top.  I hate wearing bathing suits because then the barrel is VERY noticeable.  And getting naked, forget it!!!!  Ok well there I have no issue but its not like I am standing up modeling my nakedness LOL!  Minds are elsewhere ;)  I am constantly buying new clothes because the ones I had 6 months ago no longer fit.  Mainly work clothes, and they are expensive!!!  The buttons start to pop out a little and then, opps, next size up!  Of course the next size is too big elsewhere and I begin to look like a drowned rat.  I am still in a size small so no it isn’t that huge of a deal but XS used to be big on me and would still fit if not for this stupid chest!  

The worse our lung functions get the worse the barrel looks.  I am at 40% right now I can only imagine what it will look like when I am at 20% and 10% and can’t breathe worth a pooh.  Will some of the barrel look go away if I can get the excess air out?  Will I be able to fit into my clothes again if I can get the plugs out that are trapping the air?  When I ultimately decide to have a transplant will that look go away entirely?  This are just arbitrary questions.  Will the bloated belly disappear too? 

For all you bloated, barreled CFers, I salute you and your quest for loose fitting, comfortable clothing!  Now shall we all do chest bumps? LOL

Thanksgiving thanks

My turkey day was pretty good!!  I ate WAY more then I can fit in my stomach comfortably haha!!  But that is the joy of Thanksgiving!  

I went to my mom’s to help cook around noon.  Hey she didn’t get up until 11 either!!  Everything was mostly made we just had to cook things.  I got to peel the potatoes…I think there might have been some finger skin in there too haha!  Just kidding!!  Our goal was to create a centerpiece that would look nice…and stand on its own.  We started out with candles inside apples.  They did not want to stand alone.  So we tried scotch taping them to the table.  Even worse!!  So then we got a basket and put the apples in it and got two lemons, skinned them, ad put them in there.  Worked great!!  But it was a little bland.  So my aunt went to the neighbors house and collected some sap filled pine cones.  That helped tremendously!  My mom had some gourds so they were placed around the basket too.  Ended up looking mighty nice!! 

I was supposed to eat dinner at my mom’s and then go to my dad’s for desert.  Since the two of us slept late I ended up switching it around.  I went up to my dad’s around 3:30 and had appetizers and then dinner.  Stuffed me-self!!!!!  But it was de-licious!!!!!!!  

Dinner was a little sad.  On the way up I found myself crying a little.  It was our first real holiday with out Ashley (Step-niece who was killed in June in a car accident, 2 weeks after her 21^st birthday).  I felt sad that she was not there.  It would be very strange!  Florence (my step-mom) said the prayer and she started crying before she could talk.  She just thanked everyone for being there and all.  Everyone pretty much had tears in their eyes.  We were all very thankful to be there and be able to be with each other.  The first family-holiday after losing a loved one is the most difficult, in my opinion.  That is when you truly notice that person’s absence.  But after the prayer we a bucked up and gorged on food out the wazoo!!! 

When I was leaving my dad walked me to my jeep.  He always does, so sweet of him!!  It is one of the times when we get to be alone and just chit chat.  Of course he took the time to lecture me on the dangers of traveling to another city to meet someone I met online!!  I assured him I felt safe going out there.  I wouldn’t have gone if there was any doubt in my mind about my safety!!!!  But that is a father’s job…to worry about his daughter.  I love him!!!!!! 

I ended my evening at my mom’s with the miss-fit group.  She likes to invite people that have no where to go for dinner.  Mainly the people that live at the Langhorne Hotel.  Its very kind of her.  Just makes for a weird dinner haha!!!  

So to end on a good note.  What I am thankful for this year: 

•          To be alive and well to spend another year with my family
  
•          To have great family and friends
  
•          To have a job with excellent benefits in this spiraling downward economy
•          To have found someone that I care about and look forward to talking with every night
  

Here is a picture of the centerpiece both before and after!

Stupidity at its best...or worst!

By now I am sure most of you have heard about this. Personally I am not offended. I find it amusing. Yes it annoys me that there are people out there STUPID enough to make comments without getting the full facts. But I am trying to look at the positives...we are getting publicity!!!! Yes it is weird, strange, not normal publicity, but hey now people are out there looking up what CF actually is! NOT a disease that affects white males, as the CUSA claims, but a disease that affects caucasions of BOTH sexes.

If you are interested in reading the articles here are a few:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20081125/carleton_fundraiser_081125/20081125?hub=CTVNewsAt11

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

Clinic Today

Well today was my clinic appointment. I went ok. Been better but definitely have been worse too.

Here are my numbers:

Weight - 118
FEV1 - 1.26L, 40% (down from 42% and 1.31L)
FVC - 2.4L, 65% (stayed the same)
FEV1/FVC1 - .52L 62%
FEF 25-75% - .49L 14% (down from 15%)
FEF 25% - 1.49L 26%
FEF 75% - .24L 12%

So all of my numbers are down. But I didn’t have a treatment before I went and my appointment was at 2pm. So that could have had something to do with it. That and I am getting a cold so that will drag my numbers down a bit too. He told me I am a month behind :) Apparently what I have now is what was going around a month ago!! Haha leave it to me to be late! I got my flu shot and hopefully that will ward off anything else that comes my way.

I go back in January so lets pray I don’t need any emergency visits before then!

Today for some reason really made me want to kick my ass in high gear and get those numbers up. I am going to work out more, take the steps at work when I can, and do what I need to so I can stay healthier longer. I will not let CF win!!! :)

Good articles to read

http://www.xconomy.com/san-diego/2008/11/24/sequenom-may-spot-single-gene-birth-defects-like-cystic-fibrosis-in-a-sample-of-mothers-blood/

http://www.walesonline.co.uk/news/cardiff-news/2008/11/24/pupils-use-creative-skills-to-express-their-vision-of-future-91466-22322622/

http://news.bbc.co.uk/1/hi/health/7742873.stm

10 year Reunion

Last night was my ten year high school reunion. Wow 10 years!!! I can’t believe I have been out that long already!!!!

It was a good time. A little disappointing because there were not that many people there. Probably only a little more than 100but we graduated with well over 700!

It was fun seeing some of the people I haven’t seen since high school and remembering WHY I haven’t seen them…they suck! HAHA!! I felt like I was back in school again because of the segregation of the “clicks”. Again the “popular” kids stayed away from the not so popular kids and the “nerds”. They stuck to themselves and ignored everyone else. Whatever. I had no desire to talk to them in high school and still have no desire after 10 years…hehe.

I wasn’t sure if any one would comment about my facebook pictures and all since some of the people I am friends with on there were there, and they never knew about CF before. But no one said anything which was fine by me. No need to begin telling the world about my problems haha!!!

I had tears in my eyes at one point in the night. There was a memorial area for the classmates we have lost and my friend Mike’s name was on it, obviously. It made me sad to see his name there. I still miss him sometimes and wish he was still alive. See what drugs can do to you!

There were only 4 people on the list which surprised me. I ad thought there was more than that. I knew of 3 of the people and the fourth person I didn’t know. 2 of them were killed by drugs/drunk driving and the one guy died of some disease he had since birth.

They also had a slideshow of pictures from high school and elementary school!!! UGH it was terrible seeing pictures of me from way back when! Ahhhhh!!!! I was hideous LOL!!! For the 20 they do pictures of kids and weddings. What if you don’t have kids or get married??? Guess you don’t get on the slideshow.

I found myself wondering if I would make it to my 20 and if so would I be on O2, or have had my TX yet. A part of me doesn’t think I will be around for the 20 year. Sounds sad I know, but it is a reality. Oh well. I won’t dwell on it!

It was good being there and though it wasn’t as exciting as I had hoped I am still glad I went. If I hadn’t I know I would have been super curious and bummed I missed out!!!

The group of gals I went down with.

In memory of those we have lost. I miss you Mike!!!

What you all have been waiting for....My OKC trip

Ok well since everyone is super excited and antsy to hear about my trip…..

We had an awesome time!! It was hell getting there but it was well worth it! The weather on the East coast was not conducive to air travel!! Both my flights were delayed, which meant I got in at 2:30 am instead of 11:40pm. Not super bad but it was 2:30 am his time which is 3:30 my time and I got up at 4:30am!! So needless to say I was exhausted.

I was so super nervous to meet him, so bad I think I was driving him up a wall! But thankfully because of the delay I forgot all about being nervous to meet him! So that had its benefit! The second half of the plane ride from Dallas to OKC I was so happy and excited I couldn’t stop smiling!

I didn’t feel weird at all seeing him or talking to him in person. I wasn’t sure how it would be but it felt natural. We chatted and fell into a comfortable groove.

He took me to meet his grandfather….so adorable!! And his mom…LOVE her!! I think she was my second favorite person on my trip ;) First words out of her mouth when she saw me were “you don’t look sick” haha!!! But she didn’t mean it in a bad way! Hello she has 2 kids with CF!

He took me to some great restaurants and we walked around Bricktown (revitalized area full of old brick buildings). It was cute, but dead since it was so early.

Monday he worked and I slept haha! Then we had dinner with his family for his and his sister’s birthday. It was a lot of fun. 3 CFers at one table…a lot of enzymes and coughing haha! It was like a meet and greet ;) Ok well I did the most coughing being the “sickest” one.

I left on Tuesday morning….bright and early. I was sad to go but didn’t cry until I got on the plane. Then I cried from OKC to Dallas. People on the plane probably thought I was crazy. Wouldn’t be the first time!

It was good to be back in Philly but I miss him already! Luckily we see each other in 2 weeks!!!!!

All in all it was a fabulous weekend and I am so glad I went. I can’t wait for many more weekends like it!

Here is a picture of the two of us for those of you who aren’t cool and don’t have Myspace ;)

An update...

November 8, 2008

An update for you all….totally random shit!

Well it is the end of my first new work week. I now work 4-10 hour days. I took Wednesdays off since that is when my clinic appointments usually are. And now I am glad I did since by Wednesday I am exhausted from working so much. I just hope that I can keep it up. Most likely the first week is the roughest since I have to get into some sort of a routine. My game plan is to get up on Wednesday and go to the gym after my treatments. This past week didn’t work out so well. My roommate got a puppy and when he put him in the cage when he left he barked for 2.5 hours! He leaves at 5:45am and I got up a little after 8. I tried unsuccessfully to sleep through it, and was disappointed since I was up until 1am watching the election coverage. GO OBAMA! I am hoping that this upcoming week will work out a little better. And hopefully the puppy will stop barking!

He hates being alone is what we are realizing. He loves his cage just not when the door is closed and locked. He is getting out of it so now we have to put a bungee cord around it so he stays in. He is adorable as all hell….but he is a puppy!!!

Oh I did move in with my friend who is getting divorced. Its nice. All my crap fits in my bedroom and we put my sofa in the living room. I didn’t realize how much shit I had until I moved! Good lord! A lot of it is in storage at my moms but still. I will have to take some pics and post them. I look like a pack rat haha!!!

I am now seeing what everyone had said about the O2 concentrator putting off a lot of heat. I never noticed in my old apartment because it was so drafty! But now I sleep with almost no blankets and have the windows cracked because of the heat. Its crazy!! But at least I won’t have to put the heat on in my room at all haha!! I am definitely sleeping much better with O2 and I am so glad I got it! I still sleep a lot of the weekends but I don’t get anymore crazy headaches and I wake up feeling rested which is a new thing for me!

So on to more news. I bought a weekly pill container and I am kicking myself for not buying one sooner!!!! Goodness how much easier it is to put the weeks supply of pills in and then just take them out on a day to day basis!!! Not having to open and close 9 bottles a day is fabulous!!! I recommend everyone who takes maintenance drugs to get one!! Plus now when I go away I don’t have to lug all those huge bottles with me!! Which will be perfect for next weekend ;)

Oh I can not wait to meet this guy!! We have so much in common and we get along very well. Granted its all online but that is the point of us meeting. To make sure we have the same chemistry in person as we do online. I am super excited and super nervous haha!! I have never ever done this before! He knows that so he has been really great with everything. I will have pictures to post when I get back too and by then I should have the internet up and running! If not I may go insane!!!

Work is going great. The interior design department is up and running and looking for more work. So if any of you know anyone in the Philadelphia region looking for commercial interior design services send them our way!! Well contact me and I will give you my work info so that they can call us. My partner T and I went to Baltimore last week for NeoCon East. It is a huge designer show for all things ID related. But mainly furniture and no lighting which we were disappointed about. But anyway. We made a lot of new contacts and have been getting some more products to put into our office library. We also got information about the NCIDQ exam that we need to take to become registered designers. I thought that you HAD the do the IDEP program which is like a mentorship. But you don’t have to in the US. So I can take the test right now (which means I updated my 101 things to do in 1001 days list)!!! Well come spring haha! So I filled out the paperwork to apply for membership to ASID and will be applying to take the exam in the spring! The ASID offers study sessions for the exam for free to its members so I get a double bonus to being a member. Only thing that sucks is it costs $300 a year for 2 years then it goes up to $480 a year. So that really blows! Plus once I take the NCIDQ my membership will upgrade and be more. But I will be registered and awesome haha!! And the exam itself will cost me almost $800 and takes 2 full days to complete. So I NEED those study sessions so I pass on the first try!!!! And I need to get me some money haha!! Income taxes, hopefully, unless I screwed myself with being on disability so often! Or I could lend myself out as a prostitute!!! I could make some decent money maybe haha!!

Well that is all I have to update on now.

Take care!!!

Still no internet

I still don't have internet at my house!!! UGH! So I am stuck going to my mom's every now and then and using it at work. I have been keeping up with my blogs they just aren't getting posted haha!!! I should have it by the 14th but I will be away from the 14th-18th so you won't see any new ones until then. BUT by then I will be back from my trip to meet my someone special and it will be a good blog :)

I did start my new work week at work. It's ok. 4-10 hour days are not that great though. I am tired this week!!! But hopefully I will get used to it at some point. And if not then I will reduce my hours to 36 and take a pay cut!

So sorry I haven't been posting or keeping up with everyones!!!! I feel bad :(

<3

Exercising

I need to start. I want to start. I HAVE to start. If I want to improve my lung function and get back to my base (which is somewhere close to 50%) I need to work my ass off to get there. So I have decided that today I will start again. Even if I start out going a couple days a week, it is a start. I am bringing workout clothes with me to work and I will change when I get to the gym.

Here's to getting healthy and staying off that lung transplant list!!!!!!

(((CHEERS)))

My Birthday night out

We had a flipping blast last night!!!!! We pre-partied at Lou's house and then went to Da Bar around 9:30ish. It was great!!! I danced to a few songs with Kim (heels+CF=painful lungs). It was fabulous being out at a bar with NO SMOKING!! I am so happy PA decided to set that law into effect. Now people like myself can actual have a social life...how awesome is that?!?! Most people left by 1 but April, her BF Tim, Stacey, Bob and I stayed till closing. I didn't get super drunk but had a sweet little buzz going. Plenty to enjoy the evening and NOT feel like complete ass today! There were so many people there I felt so loved hehe!!! I just have to get the rest of the pics from my friends :)

Here are the ones from my camera:

pre-gaming with my martini

Kim and I

Carrie and Dave

April and I

Christine, Kim and I...silly faces

Christine, Kim and I...normal faces

April, Jay and I

April, Stacey and I

Stacey and I

April and I with Bob in the middle

Happy birthday to ME!!!!!!!!!!!!!!!!

WOHOO!!!!!

It's my party and I'll cry if I want to hehe

Nope, no crying here. Just some exhaustion LOL.

So today is my 28th birthday. That means I get to officially start my 101 things to do in 1001 days list.

As a birthday present I bought myself the Blackberry curve. Well I was due for an upgrade and with the online discount I ended up only paying $50 so how could I NOT get it! It is the best thing ever!!!!! I can't believe I never had one before LOL.

I will be celebrating with my friends tomorrow night. We are going out to party and drink and be merry. And we are going to a local bar that is smoke free so that makes it even better!!!!!

The Phillies play tonight and we get to wear phillies gear and jeans to work today woot woot!!!! GO PHILS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And as a side night...I bought a plane ticket to go meet a fellow CFer friend. I leave on November 14th and come home on the 18th. I am super excited to meet this person. Once I get back I will tell all who it is. If you reply to this blog and KNOW who it is please don't tell. Remember...hush hush for now :) I just like to tease my readers ;)

HUGS!

Who won this battle...CF did

I woke up this morning slightly depressed. Why you ask? I’m not sure. I should be thrilled! I get to go watch my adopted son Owen today for a few hours while Kim gets her hair done and Drew is at his softball game. I love watching this baby. He is the bestest kid in the world! I love him with half my heart (the other is reserved for my bestest nephew James).

But, I lie, I do know why. Yesterday was a hard CF day. A day where I realized that CF is winning right now. Where CF is there poking at me, telling me that I can’t do everything I want, that I need to watch out. Telling me I pushed myself too hard, doing daily, everyday things.

I am slowly packing boxes for my move. Just dividing everything into must haves and storage. So each week I take the few boxes I packed for storage to my mom’s so her BF can put them in the attic in the garage for me. There are rarely more than 4. And usually one or two are small boxes. This week was no exception. I had two regular sized boxes and two small boxes. I left the large one at home. Too big for me, with or without CF. To make my life easier I take the boxes from my living room and put them on the landing of my stairs. My steps go down about 4 steps and then turn, there is a landing there. I put them there so that I have less to go when putting them in the truck. So I packed all my wash into my jeep (two loads since I needed to wash my curtains to pack them) and headed to my mom’s. I unloaded the wash and drug it down to the basement…this wore me out. I put a load in and went upstairs to chat with my mom. I stayed about 15 minutes and then got in her jeep (Cherokee so it is easier to get boxes in) and went back to my house. I got back home and loaded up the jeep. Took less than 10 minutes. I thought I was going to die. My HR skyrocketed! I was struggling to breathe. I pressed on. I wanted to just get FOUR boxes into the jeep. I finished then supported myself on the railing while I coughed myself to tears. Literally. My head felt like it was going to explode, my eyes bulging out. I finished coughing and went back to my mom’s. I sat inside for a few minutes to make sure I had my breath before I unloaded the car. She has a wagon so I could just put the boxes on there instead of trying to carry them to the backyard garage. I would DIE if I had to do that. I refused to let them help. I needed to do t his myself. That went smoothly. Only a few coughing moments. Then I went inside to change my wash. I loaded the dryer up with my clothes and grabbed the towels to hang outside. I got to the top of the basement steps and coughed my lungs up. My mom asked if I was ok. She rarely does that. She knows my cough. I said yes and pushed myself outside. I hung up the towels, the whole time coughing. I went inside and leaned against the counter watching my mom mix up the ingredients for a cake. I felt EXHAUSTED. But by this point it was 3 and I needed to do more running around. No nap yet.

By the time I got home it was 4. I only went to my brother’s to drop off the mortgage statement. I helped Tracy hang up a thing for my nephew so he can measure his height. And we chatted for a bit. It was relaxing. But instead of just sitting down and doing a breathing treatment, when I got home, I decided I needed to take the curtain hardware off of my windows. So I did. THEN I did my treatment. A full one which is RARE for me on the weekends. Usually it’s just my nebs, not nebs and vest during the day. But I felt I needed it. After that treatment I went back to my mom’s to get my wash. I was picking my friend up at 5:30 so we could go to a birthday party for a friend of ours. I got my dry clothes out of the dryer and took my curtains to the backyard to hang them. Even after JUST having a treatment I hacked myself silly. I was disappointed. Very much so.

Fast forward a few hours (tired of the play by play yet? HAHA). We get to Kim and Drew’s to watch the Phillies game. I am outside with my friend Lauren and we are chatting. Several times we need to stop talking so I can cough my heart out. 5 minutes or more these were lasting. I was shaking I was coughing so hard. Of course it didn’t help that she would make me laugh DURING the coughing! I blow it off as nothing, just normal. Inside, though, my mind is screaming at me, “you pushed yourself TOO hard idiot! This is the price you pay!” I head home shortly after this.

I have a friend, we chat everyday, via webcams. So we begin our chatting. I hook up to my treatments, he is doing his (yes he had CF as well). During our conversations I have a few coughing spells, so bad that he asks if I am ok. These are lasting forever it seems, just wearing me out completely. I just smile and say I’m fine. But deep down inside I hate it. I hate myself. I hate CF. After some prodding from him and seeing my HR hit 160 and O2 hit 89, I give in and put my oxygen on. So there I am chatting with him, via webcam, with my O2 on, while I am awake. I feel defeated. Utterly and completely defeated. I try to make light of it all telling him not to laugh at me. He won’t, I know this.

I just hate it. I hate having to pace myself. I hate having to pretend that I feel ok. I hate having to put on a happy face for everyone and I hate having to pretend CF doesn’t bother me. Because quite frankly, CF scares the living shit out of me. Lately, as I realize what I am losing, I feel myself getting nervous and scared. Like last night as I sat looking at myself on my screen with the tubing around my face, I thought how this time last year I NEVER would have thought that I would need O2 during the day or night. He and I talked briefly about tx, but I had to stop it because I could feel the tears welling inside. I don’t want to think about that. I want to live. But I don’t know what to do to make myself live longer, to stop the progression, to win for once.

I don’t need IVs, I don’t need a hospital admit, it was just a bad CF day. Today I feel fine again. It was a day I pushed myself over the CF line. The day where my body laughed at me and made me out to be a fool. The day where CF said fuck you and won.

I hate those days, I truly do.