Sunday, September 18, 2011

It's just how it is....

I just need to let off some steam. I've been trying to hold things in and keep quite but I'm just fed up this morning.

I despise CF. I hate everything that it is. I hate that it affects my husband just when we think things are starting to get a little bit better. I hate how it is ALWAYS there no matter what. Usually, I just suck it up, life with it, deal with it - because it's our life.... but if you were in my shoes, trust me - you'd get fed up with it too at times. I am so tired of hospital stays every few weeks. I'm sick of how it makes Spencer so damn tired all the time so that he is sleeping the majority of the day which leaves me to cook, clean, sit... alone. It gets lonely and I hate it. Is it sad that I can't even imagine a "normal" life? I mean - everyones definition of normal is different.. and I don't think "normal" exists... but I have no idea what it would even be like if we didn't have CF in our lives.... And I hate that. I am so tired of doing things alone because it strikes when we have plans. I am tired of not being able to do the little things together, the easier things.. such as go to church on a Sunday afternoon and praise our Heavenly Father together, as a couple, as husband and wife. I hate going to church alone. I hate it so much that I usually don't go. And then I feel guilty - because I know I SHOULD go.. and it would help me to go. But when I go, all I can think about is being alone - missing my husband who should be there by my side, holding my hand.. feeling the presence of the Holy Spirit around us... Come on.. is going to church together SO much to ask for?!?!

I just wish for a week of no pain... a week of energy... a week with a fantastic attitude on life... a week to actually be able to be impulsive... a week without disappointments... JUST ONE DAMN WEEK! Hell I'd even take a DAY at this rate!!!!!!!!!

I live with the treatments, with the medications.... they help him to stay "healthy" (funny that when we say that Spencer is "healthy" he is still coughing up a storm, throwing up after meals, and taking at least 2 naps during the day)... I can deal with the "preventative" measures... The part that just pisses me off is that even though he works his butt off to get better.. it's such a SLOW process - and when we think it's turning up... something else hits (maybe not a lung infection, but his kidney acts up, or his liver, or maybe a blockage, or the flu).... It's a never ending battle... And I'm exhausted.

Everyone tells me that I'm so positive.. That I handle everything so well.... I guess I try - sure.. but behind that happy smile and positive words - a lot of times it just rips me apart inside. I don't want to show it... I have to be strong..

but honestly.. this morning I don't want to be strong.. I don't want to be positive.. I just want to feel pissed off, angry, sat, hurt, upset.. and every other emotion I'm feeling. I don't want to be the strong one for once. Are there positives to CF... sure there are... do I want to think about them right now... hell no.

I just want a cure.... I want to see Spencer better.... that's all.


  1. sending lots of prayers & thoughts your way, honey.

  2. I totally know what you mean.
    Sending my thoughts and prayers for you and Spencer.

  3. Ok Nikki, I can totally relate to EVERY.SINGLE.WORD! They are true and your feelings are normal. CF pisses me of EVERY single day! Now that Jim has had his lung transplant things have gotten better but I was in your shoes and they are not shoes that anyone wants to be in, but you know what? You're supporting Spencer, you're an amazing woman to stand by his side as is all of the other CF wives and family members! Hang in there girl! You guys has lots of people pulling for you. Get pissed, throw something, kick, holler, scream! It sure as hell worked for me. You've got to let it out or it will just eat you up inside! Hang in there CF wife! Love and hugs to you and Spencer!!