Sunday, December 28, 2008

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?


  1. I know the battle all too well. It was the hardest thing in my life to give up, I was a pediatric RN and I loved my job. But it was killing me. I knew it, but didn't want to except that. It took for my pft's to drop into the 40's to face it. If I had it to do over, I would have went for LTD and applied immediately for SSDI, it took me almost 2 years to get mine. I am still waiting for my medicaid, so get the process going quick once you decide. Having your doc on board, which I did makes it easy, the judge was very let down in the system when he seen my case had to get to him for the right decision to be made. Our system sucks. Good luck. Now that I have done it, I am very happy. I can spend my precious time with family and my husband and concentrate my energy on having a baby. I want that more than work...Life is precious and I want my years spent doing what makes me happy. I work around the house, soon hopefully, I will be painting and decorating our new house, installing tile, I love doing stuff like that. My thoughts are with you. I know how this time in life can tug on the heart...

  2. I know this is a hard decision. I feel the same exact way...although I have had a transplant. However, unfortunately, I get sick a lot, go in the hospital and face rejection. However, I still manage to work. I love to work. I push myself all the time to where I have no energy. I don't go out at night too often because I'm exhausted after work. I'm also in school full time. But I hate to be bored. Like you said, since i CAN work, I want to work. I don't want to give into government funding or help. I want to be able to tackle this on my own and support myself without SSDI or LTD. I get fussed at all the time from my transplant team to quit working. But my view is that I didn't have a transplant for nothing....I CAN work and want to work. And like you...I'll probably still keep doing it. I hope you come to the right decision in your heart that you fill is right for YOU!