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…